Part II – Stage I Invasive Breast Cancer; Chapter 8 – 2007 Mammogram

It’s clear, no, wait, it’s not

As the years passed, follow-up appointments with my radiologist, oncologist, and breast surgeon became less and less frequent. In the first year they were every 3 months, then every 6 months. By the end of the fifth year, I was down to only annual check-ups. In August of 2007 I went in for my annual mammogram, which went smoothly.  The radiology tech said the images were fine, no repeats, no zoomed in images on the left breast (which sometimes happened if they had trouble seeing the tissue around the scarring from past surgeries and radiation).  What a relief!  Then, two weeks later, just one day after my 5-year cancer-free anniversary, I got a call from my gynecologist’s office, who prescribed the mammogram.  Her nurse called to say the radiologist had trouble reading the mammogram images, that there was some kind of densification – dense areas in the breast tissue that make it difficult to see what is going on – in both breasts, and they wanted me to go in for an MRI. An MRI uses a different technology – magnetic resonance imaging – than a mammogram does and can sometimes see tumors not detectable by mammogram. 

This news gave me a sinking feeling in my stomach, which soon became a little hard pit of dread.  I called MG at work with the news.  She responded as she usually does to iffy news about my health.  We will get the test and see what they say, and until we know more, we will hope for the best.  I was convinced that this was the beginning of the same process all over again, and that the cancer was back.  She felt I was being fatalistic, and that this was just another false alarm.  It was probably just a problem with the scar tissue in the left breast, and probably just my breast tissue getting denser in the right breast. Densification happens as we get older. I knew she was probably right, and I wanted to believe her, but my dread would not go away.  

I had been planning to go to the office on campus and do some work on my doctoral dissertation, so I went ahead with that plan, but I was preoccupied and filled with dread.  When I got into the office, I told a friend, “I just know this means the cancer is back.” She hardly knew what to say.  What would you say if someone told you that? I had not known her during the first cancer, I had not known most of the people that I knew now through graduate school, so my cancer history was a story they had heard, but not something they had experienced with me.  And because it was DCIS, I think they thought, like MG and I wanted to think, that it would not come back.  

I had never had a breast MRI before, and it was a strange experience.  I had had MRIs in the past, once on my right hip for a lipoma, which is a benign fatty tumor.  But breast MRIs are very different from other MRIs.  Like other MRIs, before I went into the imaging room a nurse put in an IV, for the contrast, which makes it easier to see any abnormalities in soft tissue.  Once I was in the imaging room, I could see that the setup was very different from the typical MRI, which usually involves laying on your back and going headfirst into the machine.

For starters, I was going to have to spend the whole breast MRI lying face down, and I would be going into the machine feet first. To make sure my breasts were not compressed in any way, I had to lay on a foam platform, which had three openings, one for each breast, and one for my face.  The technician had me lay face down on the platform, with my hospital gown open in the front, so the fabric would not interfere with the images. Then I stretched my hands over my head, so they wouldn’t get in the way of the images.  My IV was connected to an automatic injector, which stood outside of the MRI machine, and which contained the contrast solution. They offered me the choice to wear earplugs or headphones, or both – I chose headphones, but quickly learned that they did not protect my ears enough from the noise of the machine – and then asked what kind of music I preferred.  

Before they slid me feet first into the MRI machine, they gave me a small remote with a “hot button” to press if there are any problems during the procedure, like if I feel claustrophobic or have a panic attack. If you press the button, they talk to you through the headphones, and if you need them to stop, they stop.  I only used the button once, at the beginning of the test, when I realized that I needed the earplugs to protect my hearing. I did not use the hot button again because I just wanted to get it over with. Instead, whenever I felt panicky about the noise, or about why I needed to have this test, or about what I was afraid the results would be, I just tried to talk myself out of it. It helped that I had MG’s voice in my head, reminding me that there was no reason to panic because as far as we knew so far, there was nothing wrong with me. The first part of the MRI is done without contrast, and then the auto-injector pushes the contrast into your IV for the second half of the procedure. The MRI itself takes about half an hour, but the whole visit is more like an hour or longer.

On September 7, 2007 I wrote the following email to my siblings:

Subject: Clean bill of health at year 5

Hey everyone,

I wanted you to know that I had my annual mammogram two weeks ago, followed by an MRI, and I have been given a clean bill of health in terms of breast cancer.  The MRI was a follow-up to the mammogram, because I had not had one before and because the increasing density around my scar tissue was making the mammogram difficult to read - basically, we are just defining a "new normal". …

I have an ultrasound on Monday to validate the MRI findings - to verify that the only spots seen, which are located one near the lymph nodes on each side, are exactly that - lymph nodes.  I expect this to be true, since we are talking about both sides looking the same, which is unheard of when there is cancer.

So, I have made it to my fifth cancer-free anniversary, and I wanted you all to know.

 

I was confident that what I was telling people was true, as I had not gotten any calls after the ultrasound. (Back then, doctors usually called with test results, and definitely if they were bad.) In early October, on a Friday, my surgeon called, concerned that no one had compared the ultrasound and MRI images, or confirmed that the spots we were seeing in my breasts did indeed look benign.  So, she had the chief radiologist from the hospital Breast Health Center lined up to compare the images and give his diagnosis.  This was the same radiologist that had performed my core needle biopsy back in 2002, so we knew he was good.  She called the imaging center that had done the ultrasound and asked them to send her the images right away, so that she could have all of the images to the radiologist that afternoon.  They agreed to send her the ultrasound films.  

By that afternoon, when she had not yet received the images by messenger as she expected, she called them again and found out that they had sent the images in the mail, and she would not be getting them until the beginning of the next week. She was not willing to wait, though, so she walked down the hill from her office to theirs and picked up a copy of the images in person, and hand-delivered them to the radiologist that afternoon.  That’s how dedicated my surgeon was to her patients.  Her sense of urgency, rather than making me feel more nervous, made me feel more secure.  I knew her, so I knew she would be aggressive if she thought there was any risk of a positive diagnosis, but I also knew that she was upset that nobody else had bothered to compare the images and she wanted to confirm that their original negative report was actually negative. 

The dread

The feeling of dread, which had gone away after the ultrasound, was back, but I was doing my best to ignore it.  It was Friday, so I would have to try not to focus too much on it over the weekend.  My inner voice was telling me that we were once again on that road toward diagnosis, but MG focused on the positive, that the surgeon was just being careful because of my history, that I had passed the five-year mark.  Oh, how I wanted to be positive like her.  She is such a natural optimist, and I am not.

Luckily for both of us, I had been given a prescription for a low-dose anti-anxiety medication in August.  My prescription was only for half a milligram, but it was just enough to make it possible to sleep, even as I was struggling with feeling dread during the day. And of course, I was still trying to focus on my dissertation and other academic projects, like developing a poster for a conference.  My plan for this year was to be on the academic job market, which was just getting underway, so I was also looking for jobs and post-docs, working on my CV, and writing cover letters.  I was staying as busy as possible, which is fortunately very easy when you are trying to finish your doctoral dissertation.

Core needle biopsies

The next week, my surgeon called again.  The radiologist did not like what he saw when comparing the MRI and ultrasound images and wanted to do a core needle biopsy on EACH breast.  The spots didn’t look like lymph nodes to him.  I definitely felt like we were walking down a very familiar path.  MG tried to reign in my panic.  In my gut, I believed they were going to find atypical ductal hyperplasia again, on at least one side, if not both.  

On October 16, 2007, I updated an old college friend:

My life is crazy because of academic work, applying for jobs and post-docs, etc. Plus, my parents are damn near impossible to manage and I've just about given up trying.  And I'm on the diagnostic roller coaster that breast cancer survivors get on every once in a while. Next Friday I have to get a biopsy, actually, two biopsies, one on each side. Now that all of the radiologists and doctors have finally made up their minds, I just need to bide my time until next Friday.  Luckily for me, my youngest sister will be having twins any day now, so I will have plenty to keep me busy, as I'm staying with the 2-year old while she is in the hospital. As you know, nothing keeps you focused on the moment like looking after little ones.

 

I also sent an email to my siblings, letting them know my original message about my clean bill of health was premature, and I was facing core needle biopsies on October 26th:

… I'm feeling a little panicked, but we just got off the phone.  Some of this is feeling too much like the first time, but Dr. G. isn't being as aggressive, which makes me feel like maybe we are just talking about confirming false positives and not looking at any new cancer.  Dr. G. says that they are just being paranoid because of my history.  I would rather that we do this than not do it, but I wish we could do it, like, tomorrow, and get it over with!

I was doing my best to follow MG’s lead – try not to worry until we knew there was something to worry about.  Stop listening to that fatalistic feeling.  I went to some AA meetings to focus on living in the moment, rather than projecting about the test.

This time, I insisted they use Lidocain, not Novocain, so I wouldn’t have a reaction to the epinephrine.  The biopsies were performed with me half-seated half-lying down, face up, instead of lying face down on the special clamping table.  I think this was because of the location of the spots where they had to perform the biopsies, which were closer to the center of my chest, rather than near my armpit, as the biopsy had been back in 2002.  There was also a lot of blood during the biopsy, because we weren’t using epinephrine.  This would have been fine if I had not looked down after they did the biopsy on the left.  But I did look down, and when I saw all the blood pooling in my cleavage and running down my side, I started panicking.  So the radiologist decided we would take a break, and he had MG come in the doorway of the room and give me a little pep talk. Which included her saying something like “stop looking down” and “stop looking at the monitor.” After a few minutes the radiologist came back, and we did the core needle biopsy on my right breast. The radiologist said that he thought he got most of the spot on the right, and that I should hang tight and wait for the pathology results.

When my surgeon called me with the biopsy results, she said that they had found precancerous tissue (atypical hyperplasia) in my left breast, although my right side was benign. That feeling of doom in my gut was getting even stronger.  Here we were again.  Now we were scheduling a surgical biopsy. But again, we were not being too aggressive, I think because we were all assuming, including my surgeon, that at the most we were probably looking at DCIS again.  So, if that was the case, DCIS is not life-threatening.  But because it was on the left side again, I knew that even if it was just DCIS, I would probably have to have a mastectomy.

Oh no, not again

On November 5, 2007 I wrote an email to a friend who I worked with during my first cancer, which included these comments about the mammogram and core needle biopsies:

I am also in a bit of a mess in terms of breast cancer.  It appears that it may be back.  I had a bad mammogram this summer, followed by an MRI and an ultrasound which both looked suspicious on both sides this time, rather than just on the left, so I had what they call a core needle biopsy 2 weeks ago. I'm benign on the right, but I have precancerous tissue on the left, which is what happened last time.  So now I'm scheduled for a surgical biopsy on November 26th, the Monday after thanksgiving.  I'm nervous because if it's back on that same side, I can't do radiation again, so I will have to have a mastectomy.  I can't even imagine.

On November 6th, an update to my college friend:

As for me, the news from my biopsies is not as good as we had hoped.  Everything is fine on the right, but I have precancerous tissue in my left breast, which is where I had the cancer before.  I go in on Nov 26th for what they call an excisional biopsy, where they remove the precancerous tissue and then pathology determines if there is any cancer inside of that.  We went through this the first time, so I'm pretty nervous that the cancer might be back.

At the very least, if it is just precancer, I have to take Tamoxifin and induce menopause, as my cancer is very hormone receptive.  If there is cancer, then I have to have a mastectomy, something that pops up in my dreams every night since I heard about this.  If the cancer is as early stage as it was last time, I don't need chemo, but if it is at all invasive, then I do…

November 14, 2007:

I am doing okay.  Not thinking too much about the surgery or the possibilities of what comes next.  I think I just got tired of being so stressed out about that.  Now I've moved on to worrying about my presentation, the conference, and these interviews I have on Sunday morning about the fellowship I didn't get and this job I'm trying for.

Suddenly, I could see why some women have what they call a prophylactic mastectomy, which is removing a healthy breast just in case you develop cancer in the future.  I had already had one biopsy on my right breast.  Even though it was still healthy, it really felt like it was just a matter of time.  But that was a decision to be made after the surgical biopsy on my left breast, which we scheduled for the Monday after Thanksgiving.  In the meantime, I was getting ready to attend my annual conference, where I was scheduled to receive a national pre-dissertation award. The conference was in San Francisco, CA, one of my favorite cities to visit.  My brother A lived in San Jose, so I was able to spend some time with him during the conference.  And I was able to see a lot of the friends that I have been blessed to know during my years attending the conference.  

At the annual meeting of my special interest research group at the conference, I told people I would be having this surgical biopsy, and that I was afraid my breast cancer was back.  What I didn’t say was that in my gut, I knew it was back, I just knew it, and most days it was all I could think about.  I would walk around the city, or the conference, and in my mind would be this voice, asking “what are we going to do, what are we going to do?”

The surgical biopsy was pretty much like the one I had back in 2002, with the exception that they changed the drug they put in my IV before they rolled me down the hall to the OR.  It was just as effective at quickly stopping my anxiety, though, so I still called the anesthesiologist that administered it Dr. Feel Good.  I was starting to feel like an old pro at this surgical biopsy business, which is not a good thing.  But at least I was less anxious and less emotional during recovery.  Because of my sensitivity to surgical tape, the surgeon used a different kind of tape to cover my incision this time. She instructed us to dissolve the adhesive with baby oil when it was time to change the bandage, and that worked really well.  (This is noteworthy, because as you will see later, baby oil does not help remove every kind of surgical tape, and with some, you actually get quite the opposite effect.)

Later that day, I emailed my brother, who had sent a package of home-baked cookies:

Thank you so much for the cookies.  They are almost gone!

Surgery went really well, and aside from some pain, I am doing better than we thought. We should have the results some time on Friday.  I will try to remember to call you, but if I don't, please don't be afraid to call.

Thanks again, from both of us. 

The results

I was diagnosed with Stage 1 invasive breast cancer the morning of November 29, 2007, almost exactly five years after I finished radiation therapy for DCIS.  To say that I was shocked and disappointed would be an understatement.  I spent the entire day in a state of shock, unable to get warm or to stop trembling, crying on and off all day.  

Later that morning, I sent this email to a friend in Ithaca:

… I had an unreadable mammogram, which led to an MRI and an ultrasound, and then a core needle biopsy on both breasts.  This biopsy showed precancerous tissue in my left breast, although my right side is still benign.  So this Monday I had a surgical biopsy to remove the precancerous tissue and determine if my DCIS was back.  

The DCIS is not back, but I do have an invasive breast cancer in my left breast, probably Stage I, but we won't know until the lymph nodes come out during the mastectomy.  Because I had this breast treated with radiation before, I can't have breast-conserving surgery again, so I have to get the whole thing removed.  MG and I are almost decided that I will get reconstruction, and that I will probably do the right side as well, just to avoid having to go through all of this again on that side later.  The risk is pretty high, now that I've had two separate kinds of breast cancer on the left.

We won't know about chemo until the lymph nodes are tested, but my surgeon thinks that because I am so young, it will probably be recommended.  We are still wondering if we should get a second opinion or not.  I haven't talked to my oncologist yet; we have to see what she says.  I've only known this since about 9am this morning.  Thank God MG was home when she called.

… I'm pretty much still in shock, can't stop shivering.  MG had to go to work for a while, but is coming home soon for a long lunch, and then my friend J is coming over for tea at 3:30.

Chapter 7 – The Fear – I Don’t Recommend It

In the days after I finished radiation therapy in 2002, I often found myself crying for no apparent reason. Or for little, meaningless reasons. Really, I think I was crying for a lot of deeper reasons: frustration with the pain, anger that I had to go through treatment at all, relief that treatment was over, and fear that the treatment had not worked. I remember going to my sister’s home for the holidays that year, and being very emotional the whole time we were there.  This emotional volatility would come and go for a while.

Fortunately, the blisters from radiation eventually crusted over, became less painful, and started to heal.  I also became less raw emotionally, although I continued to struggle with fear of recurrence.  The radiation burn on my breast eventually faded, but I continued to have pain in my breast at the tumor site. Pain that my radiation oncologist simply said that I shouldn’t be having. When sufficient time had passed, my breast surgeon prescribed my first post-treatment mammogram. 

This mammogram did two things: it confirmed the cancer was gone, and it showed that one of my lymph nodes near the tumor site was swollen. There was a small chance that it could be cancer cells, but it could also be an infection. My breast surgeon did an in-office needle aspiration – drawing the fluid out – of that lymph node to test it for infection, and in the meantime put me on a general antibiotic.  By the time the test results on that lymph node were back, and confirmed it was an infection in the tumor site, the antibiotic was already working and the pain I had been feeling for months was finally gone. However, in the days between the aspiration and getting the results, I struggled with the fear that the cancer was still there.

That experience, even though everything turned out fine, was just the first of many false alarms that MG and I went through after my first diagnosis.  That is the life of someone who has been treated for breast cancer, or any cancer.  Anything that looks remotely related to your cancer, even if it was early-stage and successfully treated, means extra tests and holding your breath until you get the “all clear” yet again. Many survivors experience a similarly stressful reaction to regular follow-up exams, like annual mammograms. And no matter how many times the doctors tell you that you are fine, you may still react with some degree of fear. I think this is normal for anyone who has been through cancer or any potentially terminal illness that can come back after treatment.

I want to make a distinction here between that kind of fear, the fear that arises in response to having some kind of medical test done, or some kind of temporary health concern, and the kind of fear that I often struggled with during the five years following my first breast cancer.  And I want to make this distinction because I feel like I often lived my life in a state of fear: unnecessary, time-wasting, life-draining fear.  I call it unnecessary fear, because if you remember my initial diagnosis, it was Stage Zero, non-invasive, ductal carcinoma in situ.  Which is a particular cancer that can’t come back (or recur) because it had never escaped its original location in the duct. So, the chance of getting anything other than more DCIS elsewhere in my breasts was pretty small.  Now, at several points along the way in this diagnosis journey, MG and I were told that the odds were in my favor, that the chance of a negative outcome for a particular test were very low; and every time, we got the result that the odds said we would not get.  So, even though the chance of my DCIS coming back was low, I just couldn’t shake the belief that it would somehow come back.

It would not be an exaggeration to say that I lived a lot of the five years following my DCIS treatment in a state of fear about something that would probably not happen. And I regret that choice. Because I do believe it was a choice, a choice that I made on a regular basis. I listened to my fear and I let it control my life. I think I believed that if I was vigilant about the return of the cancer (if I let the fear run my life), then it wouldn’t surprise me when it came back. Somehow I would be ready, or something.

I hope that as you read that last paragraph it seemed irrational to you; because it was irrational. There is no way to prepare yourself for the return of your cancer.  Just as there is no way for your doctors to predict if your specific cancer will return, or when it will return, or in what part of your body.  Therefore, living five years of my life in a state of anticipatory fear of my cancer coming back was a waste of time and emotional energy, and I’m pretty sure that this daily choice may have had the cumulative effect of keeping my body in a state of constant stress, therefore leaving me more vulnerable to developing a new cancer.

It is precisely because I spent so much of those five years choosing to live in fear, that when I ended up being diagnosed with a new breast cancer at the end of those five years, I immediately felt responsible for bringing that new cancer on myself.  Now, do I believe that if I had not lived in fear I would never have developed the new cancer? No, I don’t believe that. I believe that my breasts grew cancerous tissue, which was fueled by estrogen, and that I would eventually have gotten cancer again.  Would I have gotten it so soon? I don’t know. But I do know that I would have had a richer, more enjoyable life during those five years if I had not chosen to live in fear.

The reason I write about this fear is that I am hoping to help you avoid making the same mistake.  There is no logic or sense to living life being afraid of illness or death.  It’s not that I don’t still have my moments, days, or even weeks where I struggle with my fear of recurrence and death; of course I am sometimes afraid.  But between those brief periods of being afraid, I choose to not be afraid.  And I am not just choosing to not be afraid of the cancer, which gives me more freedom to feel joyful and happy and at peace; I have chosen to let other fears go as well, fears that always held me back from doing things I wanted to do. 

For instance, I chose to give up my fear of riding in boats. This fear used to mean we couldn’t go on adventures like whale watches or ferry rides, which MG really enjoyed, as she loves boats and the water. Since treatment for my second breast cancer, I have been on whale watches off of the coast of Maine and Cape Cod, in the Bay of Fundy in Nova Scotia, and I have taken lake cruises and ferry rides, including an overnight cruise from Portland, Maine to Yarmouth, Nova Scotia. I no longer suffer from seasickness on boats. I also gave up my fear of heights, which allows me to be more adventurous.  MG has often said she misses my fear of heights, particularly when I am standing on the edge of a canyon or a cliff, which I would have been too afraid to approach in the past. Don’t misunderstand me; I have not become reckless. I don’t go skydiving or enjoy crazy carnival rides, although I do enjoy a good Ferris wheel ride. I am no longer afraid of walking across the Brooklyn Bridge, or of hiking up a mountainside in the Adirondacks. I also decided that I was tired of being afraid to ride horses, something I had always wanted to do, but which always made me fearful.  So I spent a couple of years taking riding lessens, and went horseback riding in Ireland, in Hawaii, and in the Adirondack Mountains. 

Do I wish that I could have lived those five years between cancers differently? That would be a waste of time, and I am done wasting my time. In AA, we talk about not regretting the past nor wishing to shut the door on it, and seeing how our experience can benefit others. I hope that reading about the lessons I have learned about my fears will help you spend less of your time living in your own fears.

Chapter 6 - DCIS Treatment

Jump ahead to my second lumpectomy, which went off without a hitch. I asked for Xanex again, and the surgeon agreed, since it was such a small dose. After the surgery, my incision healed even cleaner than the first time. I had been afraid that the scarring would get worse, but it did not. Then we met with the oncologist, who talked with us about the type of cancer I had and my treatment options. Again, MG went with me to this appointment, and I introduced her to the doctor as my partner. The oncologist was very respectful of our relationship, and addressed MG as a concerned partner in dealing with my diagnosis. 

The oncologist said that my cancer tested positive for estrogen and progesterone, and that if I was older (I was only 35), she would recommend Tamoxifen, which is an estrogen blocker, and keeps estrogen produced by your ovaries from binding with any breast cancer cells in your body, so the cancer cells won’t become tumors. But because I was so young, and my cancer was not invasive, putting me on Tamoxifen would unnecessarily put me at risk for other health problems that are associated with premature menopause. Also, at the time, you could only take Tamoxifen for five years, and then you could not take it again. 

She advised us to reserve Tamoxifen for use later in life, should I ever get breast cancer again. Which, of course, we all hoped would not happen. But if we used Tamoxifen then, and I did get breast cancer again, I would not be able to use Tamoxifen in the future, so better to save it as a back-up plan. This made sense to me. She said that because the cancer was non-invasive, I would not need anything like chemotherapy, which was a great relief to me. She talked to us about what radiation therapy might be like, and her office set up an appointment with the radiation oncologist. 

I liked the radiation oncologist when we met her. She was also respectful of MG and of our relationship, as was her physician’s assistant, Steve. She was very detailed in her description of what radiation therapy would be like, and answered all of our questions and concerns. Basically, I would be getting radiation treatments once a day, five days a week, Monday through Friday, for six and a half weeks . The first five and a half weeks I would be getting radiation over my entire left breast, and the last five days, the radiation would be focused only on the tumor site. She dispelled my fears about developing any secondary cancers from the treatment – she said the risk was 1 in 3 million. We talked about how the technology involved and the location of the tumor made it possible to irradiate the breast without involving the chest wall, which would minimize any side effects like anemia or anorexia. There was a possibility of some fatigue, but every woman is different, so we wouldn’t know how the treatment affected me until I was going through it. 

We scheduled my first appointment, at which the technicians would identify the target zone for radiation and mark me up with a sharpie (they keep the sharpie marks fresh throughout radiation therapy – a necessary but unfortunate daily reminder of what you are going through). MG went with me to that first appointment, which took place the day after my 36th birthday. Happy birthday to me, right? 

After that first appointment, I went to my radiation sessions alone. For the first few weeks, my sessions took place at 8am, before work. Each session took only about 5 minutes from walking into the radiation room, getting settled on the table, being irradiated, and walking back out. It took longer to get undressed and redressed than it did to be treated. The first session was pretty emotionally traumatic. Just the reality of being on the table, and the awareness of why I was on that table, were pretty overwhelming. My drive to work from treatment took me right past our neighborhood, and I knew MG was still at home, so I stopped at the house and cried on her shoulder before heading in to work. 

As time when on, treatment sessions were less emotionally painful, or at least I got used to them. I got used to seeing the other patients in the waiting room, but never for very long, because they did an excellent job of moving patients in and out of the waiting room quickly. However, the treatments themselves were increasingly physically painful as the radiation started to work. Even before my skin started showing signs of radiation burns, I felt a deadening feeling in my breast, which eventually became pretty painful. As soon as I started to feel that pain, I asked for samples of Biofine Emulsion Cream, which is supposed to help prevent permanent discoloration from radiation burns. The physician’s assistant resisted giving me the samples, saying that I “shouldn’t be having pain already,” and that I didn’t need the cream, but I was persistent until I got what I wanted. The cream did not seem to help with the sensations I was having inside my breast, but ultimately it did protect me from permanent skin discoloration in that breast. So, whether I really “needed” it so soon or not, I’m glad I started using it when I did. 

He may have been right, as it turns out that months after radiation was over my breast surgeon identified an infected lymph node at the tumor site through my first post-treatment mammogram. This infection may have been what was causing me to have pain so early, or the infection could have been caused by the radiation itself. Either way, if not for this infection, I probably would not have been having pain so soon into treatment. 

If you are going through a health crisis, cancer or anything else, it is important that you be your own best advocate. Nobody else knows what is happening inside your body like you do. If you have pain, and the health care professionals around you say, “you shouldn’t” have that pain, you need to be persistent about finding out why you are having that pain. At the time, I didn’t now enough to realize that I should have been more persistent about getting help with the pain in my breast, but as I continued on my cancer journey, after learning my lesson from this thankfully mild infection, I paid closer attention to what was happening in my body and became more vocal about it. I got better at being my own best advocate. 

When I was going through radiation therapy in 2002, the treatment protocol for DCIS was five and half weeks of irradiating the entire breast, followed by 5 sessions of radiation targeting only the tumor site. By the time we got to those last five days, my tumor site was already so painful that I couldn’t wear a bra. The targeted radiation ended up creating a raw, seeping blister, which just happened to form on that fold between my breast and my armpit. So then, in addition to the pain I was feeling on the inside of my breast, I was having all of this pain on the skin of my breast. The only shirts I could tolerate wearing were men’s cotton t-shirts and even those could not prevent the blistered skin from folding in on itself. Which was very painful. 

In the days following the conclusion of my radiation therapy, I often found myself crying for no apparent reason. Or for little, inconsequential reasons. Really, I think I was crying for a lot of deeper reasons: frustration with the pain, anger that I had to go through treatment at all, relief that treatment was over, and fear that the treatment had not worked. I remember going to my sister’s home for Thanksgiving that year, the same sister that came to town for the surgeries, and just being very emotional the whole time we were there. 

Fortunately, the blister eventually crusted over, became less painful, and started to heal. I also became less raw emotionally, although I continued to struggle with my fear of recurrence. The radiation burn on my breast eventually faded. When sufficient time had passed, I was directed to go in for my first post-treatment mammogram. This mammogram did two things: it confirmed that there was no cancer left in my breast, and it indicated that one of my lymph nodes was inflamed. My breast surgeon did an in-office needle aspiration of that lymph node, to test it for infection, and in the meantime put me on a general antibiotic. By the time the test results on that lymph node were back, and confirmed that there was an infection in the tumor site, the antibiotic was already working and the pain I had been feeling for months was finally gone. 

This in-office procedure, even though everything turned out fine, was just the first of many false alarms that MG and I went through after my first diagnosis. That is the life of someone who has been treated for breast cancer, or for any cancer really. Anything that looks remotely related to your cancer, even if it was an early-stage and successfully-treated cancer, means extra tests and holding your breath until you get the “all clear” yet again. And no matter how many times they tell you that you are fine, you still feel what we survivors call “scanxiety,” and I’m not sure you ever really get used to it. The further you get away from your diagnosis, the more practice you have focusing away from the anxiety, but it never really goes away.

Chapter 3 – Coming Out to My Breast Surgeon

When I was diagnosed in 2002, it was not uncommon to hear about lesbians experiencing hostility in healthcare settings because of their sexual orientation, or for partners to be left out of each other’s healthcare altogether. And it wasn’t very common to hear about lesbians who were open with their healthcare providers about their sexual orientation or same-sex relationships. This is the context in which I was facing breast cancer.  

Even though my gynecologist knew I was connected to MG and her family, we had yet to tell her that we were a couple. From our perspective it seemed implicit, but we weren’t comfortable yet making it explicit, and it hadn’t seemed important enough in that setting to take the risk. I was so used to just answering no to birth control questions, and having that be the end of that particular line of questioning. I had never had a gynecologist pursue the topic any further or ask for clarification about my sexual orientation, and there were never any questions about sexual orientation or non-heterosexual sexual activity. 

But now we were facing the possibility of breast cancer, and I needed MG by my side and visible to the doctors, so MG went with me to my first appointment with the breast surgeon.  We were both nervous.  While we were waiting for my appointment, we saw two other women in the waiting room, who looked to me like a lesbian couple.  I thought, hmmm, maybe this doctor is going to be okay.  I mean, if she’s a breast surgeon, most of her patients are women, so she has to have her fair share of lesbians among those women, right? So, when we met her that day, I introduced MG as my partner.  I wanted to make sure that she was aware of our relationship right out of the gate, rather than waiting until the “right moment” or an “appropriate time” and finding myself paralyzed by fear in situations when I need MG the most.  She didn’t even blink, which I loved about her.  She included MG in the conversation that day (and every appointment after that) asking her if she had questions, making sure that she and I both understand what she was telling us. 

This is the kind of reaction you want from your potential surgeon, or from any healthcare provider. And if you are lucky, it’s the kind of reaction you get.  Now, if she had been freaked out about my partner being a woman (something I have not encountered even once on this journey, thankfully), I would have had to either talk to her about her reaction and see if she could find a way to be more accepting, or I would have had to reconsider my choice of surgeon.  Since we really felt comfortable with her all around, I’m very glad that we didn’t have to worry about her acceptance of our relationship.

In addition to her acceptance of our relationship, the surgeon became an important source of information for me when I was facing new cancer care providers and medical settings. Based on her reactions, I was more confident about being open with new providers about our relationship. My ability to approach new providers with that confidence, as well as the changing attitudes towards the LGBTQ community in this area and in our community, may be why I have always had positive experiences with cancer care providers, as well as any other healthcare providers. In addition to her influence on my confidence levels with other providers, if I ever had any doubt about the kind of reactions I might get, I could ask her if she felt that provider or facility is safe.  She was very familiar with the local health care system and, as a heterosexual provider, had a great “insider” perspective on other providers’ attitudes about LGBT patients. She always understood why I might be concerned, and she never steered me wrong about the kind of reaction I could expect in any setting. 

Because of our confidence in my breast surgeon, we came out to everyone else involved with my cancer care. With the oncologists, radiation oncologist, with nurses, office staff, with everyone. And this also extended to being more open with my other healthcare providers as well – primary care, gynecology, allergist, just about everyone. Not that many of them needed to be told; I think it was obvious to most of our routine providers already, they just never brought it up on their own. Their intake forms never asked, their routine medical records update forms didn’t ask. MG was always my emergency contact, but I was never sure what I should list in the “relationship” box next to her name. Even after our wedding in 2005, it wasn’t until 2010 when our state passed legislation for insurance providers to recognize same-sex marriage performed in other localities where it was legal, that I felt comfortable listing MG as my spouse, rather than my “significant other” or “partner.” When the US finally recognized same-sex marriage as legal in 2013, we could feel comfortable choosing “married” as our relationship status or listing each other as “spouse.” 

I remember being particularly concerned in January 2008, when I was preparing for my mastectomy and reconstruction, which would involve a few days in the ICU before being moved to the regular post-surgery unit. I was very worried that MG would be denied the right to stay with me in the hospital. Especially the first night. This was pre-COVID, when you could have people stay with you overnight in your room or, in the case of ICU stays, in the family waiting room but with access to you throughout the night. But I had heard stories about same-sex partners being denied that right, and I had one family member who suggested that she should be the one to stay with me that night instead of my wife, as she was my “real family.” If my own family member could be so wrong about how important MG was to me, I worried that nurses or staff physicians might also be that wrong.  I took that concern to my breast surgeon, and she assured me that she had other lesbian patients have the same procedure in the same hospital, who stayed in the same ICU, and none of them had ever reported facing homophobia there. She also offered to mention how important MG was to me, and to assure that she would have full access to me in the hospital. Because she was so understanding about my concerns, I had full faith we would be treated just like any other patient and their partner. And we were.

 

Chapter 1: Mom

**Copyright 2022 Maria Teresa Brown - All Rights Reserved**

Part 1: The First Go-Round (or Ductal Carcinoma In Situ)

Chapter 1: Mom

I will start my story by telling you that I am not the only woman in my family who has had breast cancer.  While neither of my grandmothers had it, as far as I know, or any of my aunts, my mother did. It was found during a routine mammogram, and she had a complete mastectomy on that side, but no other treatment. After the mastectomy, she wore a prosthetic or not, depending on her preference on any given day. Her cancer was found when she was 63, and she remained cancer-free until her death at 81. 

At the time of her diagnosis and mastectomy, I was in my late 20s.  I had been sober for a few years, but was still a heavy smoker. Around that time, I knew of a women in my local community who had breast cancer and was a heavy smoker – she had a mastectomy, kept smoking, got metastatic[1] breast cancer, kept smoking, and then she died. All within a few years.  It seemed really fast and frightening to me. All I could think about when I heard my Mom’s diagnosis was that now that breast cancer was officially “in my family” I didn’t want to be dealing with having breast cancer and trying to quit smoking or being unable to quit smoking and dying from cancer because of it. That was the year that I began making my first serious attempts at quitting smoking.  It took several years and multiple failed attempts, but I did finally quit smoking for good the year that I turned 32. 

Now, I don’t know for sure if cigarette smoking has ever been proven to cause breast cancer, but if your mother, a heavy smoker, had any kind of cancer, you would probably find yourself wondering if her smoking had anything to do with it. In my mother’s case, she did not quit smoking. Ultimately, she developed COPD, and her official cause of death was “complications of COPD.” Mom’s smoking was not something I could change. But I could change my own habits, and so I focused on that. And one of the first things I thought the first time I was diagnosed with breast cancer was “thank God I quit smoking when I did!” 

Since my first diagnosis, alcohol abuse has also been linked with breast cancer.  As I mentioned before, I was already sober a few years when Mom had her mastectomy, and I was sober 12 years when I had my first breast cancer. My doctors have always been confident that my history of alcoholic drinking was distant enough not to be linked to my breast cancer. I am not as confident, but I am certainly grateful that I was not still drinking when I was diagnosed. Because the only thing that was harder than quitting smoking for me was quitting drinking. And I would definitely have been told to do both once I had breast cancer. Whether I would have been able to, though, is highly unlikely. 

This chapter is about Mom, not just because of her history as a smoker and a breast cancer survivor, but because of my role as her caregiver throughout the years that I was dealing with facing and surviving breast cancer.

I was diagnosed with my first breast cancer in August of 2002. I had already spent pretty much every day of that summer at the hospital, trying to figure out what was happening to my mother.  That spring, she had been moved out of the apartment she shared with Dad into a homeless shelter for mentally ill women, and eventually into her own apartment in an enriched housing program.  Her enriched housing program was essentially independent living for older or disabled adults who qualifid for Social Security Disability, Medicaid, and public housing. It was not a good transition. She was very unhappy, and her health was bad. While she had lived with bipolar disorder all of her life, she was additionally depressed about being separated from Dad, but he just didn’t want to, or couldn’t, take care of her anymore.  She also started getting really forgetful.  More than I even realized at the time.  Nobody was aware of it, but she was experiencing a medical condition – hyperparathyroidism – that was causing all the calcium in her bones to leak out into her blood. This caused hypercalcemia, which caused the memory loss and started making her fall. The worst fall broke 2 vertebrae in her back and split her head open, landing her in the ER. They discharged her back to her apartment that day, which felt unsafe to me, but I didn’t know what else to do. A week later, she was completely incapacitated and had lost most of her ability to speak. She was back to the ER, and this time admitted into the hospital. Within a week, and before they could figure out what was going wrong, she ended up spending 20 hours in a coma. She survived the coma but was what they called “severely demented” for weeks afterwards. When she was well enough, they discharged her to a nursing home. And she lived in nursing homes for the rest of her life. Her dementia became less severe after that initial hospital stay, but she never recovered her short-term memory or her capacity to take care of herself well enough to live outside of a nursing home.

In the middle of Mom going through all of that, I went to the gynecologist for an annual exam.  I had been living in Syracuse with my partner for a year and a half and had not been to the gynecologist since before I moved. Which meant I was overdue for an annual exam. I hated going to the gynecologist, mostly because it is an unpleasant experience for any of us, but also because of repeated questions about birth control (no matter how many times I told them I didn’t have sex with men, they just kept asking those questions!) and my history as a sexual abuse survivor.  So I had been putting off my first visit to MG’s gynecologist.  Eventually, her mother told her to just make the appointment for me if I wouldn’t do it myself.  The best advice ever, it turns out.  MG made me the appointment for that July, and so like a good girlfriend, I went.  The gynecologist’s office was in the same building as an imaging office, so she sent me right over for my baseline mammogram.

I was only 36, and since Mom’s breast cancer a few years earlier, the former gynecologist had told me I didn’t need a mammogram until I turned 40, because Mom’s cancer was post-menopausal. But MG’s Mom, and their gynecologist, believed in early baseline mammograms, so that you have images to compare to when you start your regular mammograms at age 40. This is why I was sent over to imaging for a mammogram.  The physical examination of my breasts was totally normal.

The events of that afternoon are not entirely clear anymore, it was so long ago.  I know they wanted a magnification of my left breast, because the radiologist wanted to take a closer look at it. Which means that I had to have extra mammograms done on that side. And I know that the area they were concerned about was very close to my armpit, so they really had to pinch my breast in the machine, which hurt. After the second image, the technician sent me back to my gynecologist, who told me that there was a suspicious area in my left breast and they needed to refer me to a breast surgeon.  Before I left their office, I had an appointment with Dr. G, who ended up being my breast surgeon for both breast cancers. 

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[1] Metastatic breast cancer is when the cancer has spread to other parts of your body (like your liver, brain, or bones) or comes back (recurs) after you have complete treatment for the initial cancer. Some people might call it systemic cancer, or stage four cancer, or end stage cancer. At this point, the cancer is not curable, although depending on the particular details of an individual case, it may be manageable with the appropriate treatments, and some women have been known to live for many years with metastatic breast cancer.

My Breast Cancer, My Mother, My Wife, and Me: One Lesbian’s Breast Cancer Journey

I've decided to use this blog to share my breast cancer memoir, which I hope to self-publish. The title of this post is one of the titles I'm considering. Please tell me what you think of it in the comments.

Lesbians, and other members of the LGBTQIA+ community, are essentially invisible in mainstream breast cancer literature.  Mainstream books written to guide breast cancer survivors through recovery from treatment are written with an unacknowledged assumption that all survivors are cisgender heterosexual women, and the authors of commonly available cancer memoirs are cisgender heterosexual women. While lesbians may still find useful information in literature written from and for the heterosexual survivor’s perspective, their invisibility in these written accounts of cancer and recovery experiences effectively communicates that their cancer experiences are unimportant. Many lesbians may see these heterosexist assumptions as barriers to seeking the help and support they need during one of the most difficult times of their life. Because lesbians with cancer may not have a community of other lesbians with cancer around them, and cannot find themselves in the cancer literature, cancer can be a very isolating experience. They may hunger for information from other lesbians who are going through the same experience.

I was diagnosed with my first breast cancer less than ten years after my mother survived her own breast cancer. As a survivor of two breast cancers (DCIS in 2002 and Stage I in 2007), I have been through multiple lumpectomies, radiation therapy, a bilateral mastectomy with reconstruction, chemotherapy, and a hysterectomy. In addition to being relatively young for each of these cancers, 36 and 42 respectively, I am also a lesbian.  I was fortunate in that, at the time of my first diagnosis, I personally knew two other lesbians who had also been through breast cancer. I quickly realized, however, that all of the support resources offered by local and national breast cancer organizations assumed that all patients are heterosexual, and that at fundraising events in my area, it was assumed that we were all heterosexual. If I wanted a community of lesbian cancer survivors, I would have to create that community. In 2008, I created a Facebook group for lesbians with cancer and their partners. Our membership currently numbers 321 lesbian, bisexual, and gender non-binary patients, survivors, and partners or caregivers from around the United States and the world. Publishing this cancer memoir is another step in providing lesbian cancer patients and survivors some sense of community with other lesbian cancer survivors.

I tell my cancer story using a combination of narrative text, email messages, private journal entries, blog entries, and messages from family members and friends.  Throughout my cancer experience, I have made sure my sexual orientation and my relationship with my wife were visible to healthcare providers, and my wife has been an active partner in all of my treatment decisions and in my relationships with my healthcare providers. While I have always had to be intentional about that visibility, and sometimes had to risk that visibility in uncertain environments, I have been very lucky in terms of providers being respectful of me and of us. This is an important point for those lesbians who may be putting off preventive screenings for fear of discrimination and homophobia in healthcare settings.  While these negative experiences do sometimes happen, they are not inevitable. Depending on where you go for treatment, you may find providers who are more accepting than you expect. In this context, my memoir also communicates the importance of being proactive in terms of regular healthcare and cancer screenings, and provides a list of available resources for lesbians and their partners facing cancer.

Scanxiety or Opportunity?

I woke up this morning at 4:30am, wide awake, thinking what if instead of choosing to be filled with anxiety about my annual breast MRI, I instead take this opportunity to revisit my mortality and think about the quality of my life in the face of that mortality?  Similar to what you reflexively do when you are first diagnosed with cancer.  Except that now, you are NOT facing a horrifying diagnosis, you are just being forced to think about it a little, until you get the next all-clear.



It's been eight years since my bilateral mastectomy and reconstruction - January 30th 2008, and the completion of chemotherapy - April 30th 2008.  Every year I have a breast MRI, and every year it's a stressful experience.  There's the stress of having to face the possibility of recurrence, which on most normal days you can pretend isn't there. There's the stress of going through the scan, laying face down on that weird foam form, and how painful it can be, the feeling of the contrast as it enters your veins, the way the contrast in your body afterwards reminds you of the way that chemo felt in your body. And for me there's the additional stress of having trouble getting the IV in.  This year, it took 3 needle sticks - one by the tech in the crook of my elbow and the 2 other by the IV specialist in the middle of my forearm and finally, the one that worked, on the side of my wrist. I've had worse - 2 years ago it took 5 needle sticks; I felt like a pincushion.

The day of the test is always a rough day for me physically, but it's hard to separate that physical stuff from the emotional stuff. So I spend a day or two leading up to the test in a state of anxiety, as well as the week between the test and my follow up with my breast surgeon. Who, most likely, will say "all clear."  Of course, knowing that is the most likely outcome would not be causing me anxiety; instead, that anxiety comes from my fear of the other, less likely announcement. The one that, for whatever reason after all these years, is easier for me to imagine.  The "it's back" announcement.  After all, it's happened before. 

In 2007, what should have been a routine mammogram after 5 years of being free from my first breast cancer turned into a repeat of the diagnostic nightmare from 2002, only this time it was invasive cancer.  So that's always there, the possibility that it could happen again.

I have tried over the years to turn this annual scan into "my annual clean MRI" with mixed success. I think I have less anxiety in the days leading up to the test, but I'm still way more freaked out than I want to be. But this 4:30am wake-up was reality-shifting. What if this IS just an opportunity for me to remember what's really important about my life, what I love about it, what I want to change, what adventures I want to have, how satisfied am I with the work I am doing now, what is the quality of my relationships... lots of things to think about that I CAN do something about, rather than focusing on the one thing I canNOT do anything about. I can't know if cancer is in my body, and I can't predict what my surgeon will see in these MRI images. So how can I find a way to focus on something else?

So here's what I can say about my life. It's a great life.  I'm healthy and active, and have the good fortune of getting older. My wife is absolutely the best partner in the world for me. I'm so grateful that I found her when I did, and that she has been with me through all of the trials we have faced in the last 16 years.  Her family, my in-laws, are totally awesome. Her Dad is the best Dad you could ever hope for, and somehow I get to have his support and help. I am so grateful that I got to know her Mom as long as I did. Her siblings are really loving, caring people and completely hysterical at the same time. As are their spouses. And I love my nephews and niece - just the one - on that side of our family. Love watching them grow up, seeing the kind of young people they are becoming. As much as I love knowing and watching the nieces on my side of the family. My relationship with my youngest sister is supportive and encouraging for both of us. I have a good relationship with my older brother. I have great friends. I choose to focus my energy on the relationships that are positive in my life, which I have not always been able to do. I love my job, and the work I get to do in that job. I love the amount of choice I have in my work, and that I can make a decent living doing it. I enjoy the mutual respect between myself and the senior faculty in the institute. I am fortunate enough to have long-standing relationships with like-minded colleagues around the country, and the chance to travel to conferences multiple times a year where I get to interact with those colleagues.

It's all good. This year, we visited Nova Scotia for the first time. I still want to visit Alaska and New Zealand. And Ireland again, always Ireland again! I still dream about traveling around the country in an RV with my wife - although not in that off-the-grid way that braver women than I are living (you know who you are!).

                            

Whatever may or may not have shown up on this scan, my life is good, and I choose to focus on that. And I will make that choice, as often as I need to, for the next 6 days until I can confirm the results of the scan. 

Why should we care about sexual minority women with breast cancer?

I have said this in previous blog posts, and it bears repeating: when an entire body of cancer-related literature basically ignores a particular community of women, we all remain ignorant of the experiences of that community, even those of us who are a member of it.

To try to shed some light on the breast cancer experiences of sexual and gender minority women (lesbians, bisexual women, queer women, women who have sex with women, gender queer and trans women - MTF and FTM, intersex people), I am conducting a study of social support and sexual and gender minority (SGM) women with breast cancer.  So far, recruitment has been fairly slow, as this is a difficult population to find. So to directly access a larger number of women and improve response rates, I am using crowd-funding to raise money to recruit potential subjects through the Susan B. Love Foundation's Army of Women.  Please donate for this important study!

Over a series of blog posts, I am sharing detailed sections from my original research proposal, so that you can see what my thinking was in choosing this topic and what I hope to accomplish with the study.  I hope you find my argument compelling enough to make a donation to my Indiegogo campaign and to share the study link with any women you know who might qualify or know someone who qualifies.  
Today's post is about the background of my study - a discussion of the existing literature on breast cancer and non-heterosexual, non-cisgendered women.  I hope you will read it, and post any questions you have in the comments.

Study Background

The invisibility of sexual minority women in breast cancer literature is incongruent with what researchers have identified as differential levels of breast cancer risk among women based on SGM identity, and a greater risk for fatal breast cancers among SGM women. Based on these greater risks, one would expect to find more representations of the breast cancer and survivorship experiences of SGM women.

This invisibility in the breast cancer literature, combined with experiences of heterosexism and homophobia in health care settings, and barriers to health insurance and access, may contribute to under-utilization of breast cancer screenings by lesbian and bisexual women. Increasing the visibility of breast cancer in the lesbian community, and improving understanding of the experiences of SGM women with breast cancer  could improve utilization of breast cancer screenings and reduce heterosexism and homophobia in health care settings.

Previous studies of lesbian and bisexual women cancer survivors indicates the importance of social support in negotiating the cancer experience, as well as the sense of isolation experienced by SGM women, many who do not personally know other SGM women who have had cancer.  Some studies of female SGM cancer survivors indicate that for sexual minority women, sexual identity is not as important to the cancer experience as one might expect, and female SGM cancer survivors may not be experiencing higher levels of anxiety or depression than heterosexual or traditionally-gendered women.

Other research indicates that older women living with female partners are generally more likely to need some assistance with activities of daily living than those living with men . More specific to cancer survivors, female bisexual survivors are more likely to smoke but less likely to report physical inactivity then female heterosexual cancer survivors, and  lesbian and bisexual female cancer survivors report poorer self-rated health than heterosexual female cancer survivors. Other research has identified perceived discrimination and perceived social support as impacting the quality of life of female sexual minority breast cancer survivors . The diversity of findings from the handful of studies of sexual minority women with breast cancer indicates that additional research is needed to understand the stresses experience by this population, and of the supports needed by, and available to, them as they navigate breast cancer treatment and survival.