Friday, December 12, 2014

I wear two hats: living as a breast cancer survivor and a researcher

As both a breast cancer survivor and a public health researcher, I have a two-pronged interest in new research findings pertaining to breast cancer. Wearing my public health hat, I’m interested in new findings that relate to improved (less toxic, more effective) treatments for breast cancer, and wearing my survivor/patient hat, I’m interested in seeing if my personal experiences (both good and bad) with breast cancer treatment are reflected in the research.

The San Antonio Breast Cancer Symposium (SABCS) is a huge conference held each December. It is attended by breast cancer physicians, researchers, advocates, and of course, pharmaceutical companies and other folks working and selling products in the breast cancer arena. One of the things that makes SABCS so interesting is that there are usually some important new research findings presented there. I've been following the conference via Twitter (this year #SABCS14) for the past few years, and it’s interesting to virtually “hear” what is going on at the conference through the lens of those live-Tweeting it. On the other hand, it is often extremely frustrating because much of the research is re-hashing of the same old treatments in different combinations. And there is very little focus on real prevention of breast cancer.

This year, one of the big studies that is being presented is the SOFT trial, a trial that compared a typical breast cancer treatment, Tamoxifen, with ovarian suppression plus Tamoxifen. The results of this trial show that there is not much benefit to ovarian suppression in addition to Tamoxifen, except for a small subgroup of younger women who have already had chemo (which means that their cancers were more severe). This is interesting to me because I was involved in a similar trial called the TEXT trial, and I have some personal experience with ovarian suppression.

This was my experience: when I was diagnosed with breast cancer in January of 2009, I had a 3.2 cm tumor that pathology showed was Invasive Ductal Carcinoma (IDC) and it was estrogen and progesterone receptor positive. After surgery, it was discovered that the tumor had not spread into my lymph nodes, which was very good news. At that time, a relatively new (at the time) test called Oncotype DX was available to me. That test, which is called a genomic test, compared a group of genes in my tumor with that of other women with a similar tumor. The results showed that I had a relatively low chance of recurrence, and that chemo wasn’t needed. However, because of the size of the tumor, my oncologist wanted me to consider chemotherapy anyway.

So the issue for me was: how much treatment was the right amount for me, and how much was too much?

The “standard” treatment at the time was surgery (lumpectomy), radiation, and Tamoxifen for 5 years. If needed, chemo could be added. As a person who easily becomes nauseous, I really didn’t want chemo, and I didn’t think it was needed. I went through a few difficult weeks of “discussing” this with my oncologist. I felt that she was pushing me toward chemo even though the results of the Oncotype test showed that I didn’t need it. It was very frustrating.

At that time, there were some trials going on, and as a researcher, I was interested in the trials. The one I decided to enter was called TEXT, and it involved ovarian suppression. The idea was that since my tumor was “fed” by estrogen, and that my body was still producing estrogen (as I wasn’t yet in menopause), that putting me into artificial menopause through ovarian suppression shots might add an additional protective effect.

So I gamely started the TEXT trial. I started taking Tamoxifen pills daily, and I received my first ovarian suppression shot (a rather large shot in the buttocks) in June or July 2009 from a very nice nurse named Ann. I had to return monthly to the hospital chemotherapy suite and to Ann for the shots, a very surreal experience. It took about 3 months for the ovarian suppression to take effect, and then I stopped having periods, and started having hot flashes. The kind of hot flashes that wake you up at night, first sweating and hot, and then sweating and cold. These hot flashes affecting my sleeping in a big way: I wasn't sleeping well at all. At the same time, my oncologist insisted that I get off the antidepressant I'd been on for years because of a theory (that was later disproven) that it would reduce the effectiveness of the Tamoxifen. So I was on a new antidepressant that wasn't working, I had terrible hot flashes, and I wasn't sleeping. Then my psychiatrist prescribed sleeping pills.

By Christmas break, I was a hot mess. I was sleeping a little better with the sleeping pills, but I was nauseous and losing weight. Eventually I developed heart palpitations and other uncomfortable symptoms. I didn't know if these were due to the ovarian suppression, the Tamoxifen, the new antidepressant, or the sleeping pills. It's kind of a long story, and I had many, many visits to many different doctors who couldn’t figure out how to help me, but eventually I got off everything – the ovarian suppression shots, the sleeping pills, the new antidepressant – except the Tamoxifen and my old reliable antidepressant. By the spring, I was feeling much better, but this whole experience left me feeling very angry and vulnerable.

After that, I stuck out Tamoxifen for 5 years. Having lived through that terrible 6 months of bad side effects, "just" Tamoxifen was like a dream vacation. I could live with "just" hot flashes as long as I wasn't depressed, didn't have heart palpitations and nausea, etc.

So now, with the new results of the SOFT trial, it seems that “just” Tamoxifen was just fine. The ovarian suppression wouldn’t have really made a difference for me. I’m glad that I went with my gut and got off the treatment that was ruining my quality of life.

What’s frustrating for me is the headlines coming out of SABCS about the SOFT trial. Many are touting ovarian suppression as a “promising new treatment.” Many are saying that these results are “practice-changing.” Few headlines are talking about the side effects, the impact on quality of life that goes along with ovarian suppression. I can only speak from my experience. Others may be able to deal with ovarian suppression just fine. But I found it was unacceptable. I couldn’t live with it.

Bottom line, it’s one thing for researchers to play with combinations of different medications and treatments, always trying to find the combination that shows a tiny bit more effectiveness. But real women are living with these medications and treatments, and there are real life side effects that impact us every day. This is not a joke. It’s not just research. It’s real people and real lives. And none of this research is doing anything to prevent breast cancer from occurring in the first place.

So I’ll continue to follow my Twitter feed for SABCS. And I’ll continue to look at the research from both a public health and a patient perspective. And I’ll still be waiting for the day that breast cancer diagnoses are a thing of the past, and that we can prevent breast cancer altogether.

Saturday, November 15, 2014

Uh, oh, AARP

AARP Magazine recently published an arguably ill-informed article featuring Sheryl Crow and Melissa Etheridge talking about their breast cancer experiences. There has been quite a bit of discussion on social media about this article. In particular, people are upset with the "Lessons for all of us" sidebar to the article, which you can see for yourself here. Here is just a sample of articles written about this snafu:
Here's my take.

I've been thinking recently about people's need to stay in control when they are faced with a cancer diagnosis. People do this in different ways. Some people insist on making extreme treatment decisions for themselves (such as the huge increase in women choosing double mastectomy for breast cancer), even if these aren't necessarily sanctioned by their doctor or based in evidence. Others start extreme exercise or food regimens in order to control their bodies. Some take enormous quantities of vitamins or other supplements. Some choose meditation, acupuncture, or other alternative treatments.

The point I'm trying to make is that with cancer, people feel the need to get back in control because they feel so out of control.

So what I think is going on in this article is that Crow and Etheridge are demonstrating quite well this "taking control" phenomenon. Etheridge demonstrates it particularly well, with statements such as: "This was my own doing and I take responsibility. When I got my body back into balance, the cancer disappeared."

Clearly there is no scientific basis for these claims. But psychologically, I do believe that these statements show us how believing that you have control over your own cancer gives some folks comfort.

Something else I've been thinking about recently is the need for some religious folks to attribute their cancer to some kind of lack in their connection to G-d. Someone I know has cancer and wrote how she was angry at herself for not praying hard enough, and for not thinking positively enough, because clearly, she thought, if she had been praying hard enough and thinking positively enough, G-d would heal her. So she needed to pray harder, and think more positive thoughts.

For me, this is just another example of taking control. We don't really know for sure if prayer and positive thoughts lead to healing (although I know that some might argue with me about this). There is no scientific basis to this. But for some, taking control in this way is helpful.

I don't know too much about the author of the AARP article, Alanna Nash, but I'm pretty sure from her bio she is no scientist and no expert on breast cancer. Actually it seems like her area of expertise is musicians. So likely that's why she wrote this article, which is about two musicians, and it just morphed into something she didn't know a lot about. Yes, AARP should have vetted the article more closely. And I do think they should publish a retraction. But Nash is probably not savvy to the world of breast cancer and took what these musicians said as truth.

Don't get me wrong: I can't stand this sort of thing that minimizes the horrors of cancer, and makes it into a positive, life-changing event. It's not positive. It is life-changing, but often not in a good way. However, I can see that these sorts of statements are really about gaining control over cancer, in a time of having no control at all.

Wednesday, October 01, 2014

It's October

So today – unbelievably – is October 1. Unbelievable not just because this was the strangest summer ever. Not just because we have been experiencing unusually warm weather (yes, I had the a/c on a few days ago although it's cool and pouring today). But because we are about to embark on the dreaded Pinktober, known to most people as Breast Cancer Awareness Month.

I’ve been complaining about BCAM for years, so I won’t do that again (much). I’ve already noted that most people are quite aware of breast cancer, and that we don’t need pink oil trucks or pink newspapers or pink gloves on football players to remind us of the existence of breast cancer. That buying pink products won’t help prevent or cure breast cancer. That breast cancer is actually many different types of cancer, that there won't be ONE CURE ever, that removing your breasts won’t prevent you from dying from breast cancer, and that what you really need to worry about isn’t the cancer in your breast but the cancer cells that have spread throughout your body before you even know that you have breast cancer. Metastasis is the killer, not the tumor itself.

The main problem is, all this early detection and treatment of smaller and smaller tumors hasn't really impacted the death rate. More and more women are finding their tumors earlier and earlier, and undergoing all kinds of treatments, but basically the same number of women are still dying from breast cancer. Why? Because the tumors found early probably wouldn't have killed them in the first place. And in spite of advances in treatment, once breast cancer has metastasized, women die. 40,000 women die from breast cancer metastasis in the U.S. each year. That's a lot of women.

So what has happened this year in the world of breast cancer?

For me, personally, I have reached the 5 year mark since my diagnosis, for what it’s worth. I am grateful, but still apprehensive. I have completed the surgeries, radiation, and 5 years of tamoxifen, and now I’ve decided to stop the tamoxifen as it caused a blood clot in my leg, and even though it is recommended now to continue it for another 5 years, that might not do me much good. So I’m stopping. I stopped. What’s scary is that some women have their breast cancer recur, either in the breast or in another part of their body as metastasis, even many years after their initial diagnosis. I could be one of those women, or I could not be. Results of my Oncotype DX test showed that I have a 10% chance of a “distant recurrence.” That means 90% chance of no recurrence. That’s what I have to live with.

But enough about me.

In other news, yet another friend in my circle had her own breast cancer diagnosis this year. Although the tumor itself was tiny, it unfortunately had spread into her lymph nodes, and she therefore needed not only a lumpectomy but chemo and radiation. She has been bravely facing all the treatments and challenges with grace and dignity. But it's nothing that I'd wish on anyone.

In the larger world, the world of entertainment, many were stunned to hear this spring that actress Angelina Jolie had a double mastectomy due to her genetic predisposition to a high risk of breast cancer. This has put BRCA testing back on the map, and apparently many women have been asking for it since Jolie’s announcement. One scientist is insisting that all women should be tested for the breast cancer genes, which is very controversial. More recently, TV news personality Joan Lunden announced that she has triple negative breast cancer, and she is now making the rounds on TV discussing her experience.

In the world of science, folks are still fighting about mammography. Is it useful? When should women start getting mammograms? Drugs and treatments make the news all the time, but really there is nothing significantly new. We keep hearing about "personalized medicine" but in reality, treatment still consists of surgery, radiation, chemotherapy, and medication. We just aren't there yet in terms of true personalized medicine. 

There seems to be a better understanding among the general public that things in our environment - pesticides, chemicals, household cleaners and personal care products - have ingredients that aren't adequately tested and that are showing harm to human health, and some may be cancer causing. This is promising, but change is slow in this area. We still aren't in a place where prevention of breast cancer is a high priority.

To sum up, I'll quote Heather Cooper Ortner, CEO of the Dr. Susan Love Research Foundation:
“Progress has been made in the diagnosis and treatment of breast cancer, but sadly, the number of breast cancer deaths has not changed substantially. Until we find the cause and how to prevent it, those dreaded words, ‘you have breast cancer,’ will continue to disrupt lives.”

Wednesday, September 17, 2014

House of Horrors: Why Didn't We Know?

Like many others, I have been horrified yet obscenely fascinated with the recent local story of  the "house of horrors" in Blackstone, MA. I'm not sure which is worse: the fact that this woman -- who is clearly mentally ill -- was somehow able to conceal her mental illness from everyone including extended family, FOR YEARS, all the while concealing multiple  pregnancies(at least five) from said family and giving birth to babies AT HOME (how do you even do that!) and then killing or allowing the babies to die and leaving their corpses in the house; that her two older children (13 and 10) somehow managed to go to school and appear somewhat normal while all this was going on; that her husband was living in the basement and was somehow unaware of all that was going on upstairs; that she gave birth to two more babies, one three and one 5 months who she kept HIDDEN and apparently never took out of the house; there is also a hoarding thing going on with piles of dirty diapers and other trash piled up several feet high in the house, leading to mice, bugs, etc.; and finally there are remains of dead pets, dogs and cats. Every time I hear more it's kind of unbelievable.

How could no one have known? asks the Boston Globe's Yvonne Abraham. Apparently neighbors noticed that bad smells came from the house, but there were no other signs of anything amiss. Apparently the Department of Children and Families was called to the home a number of years ago, and while things were messy, they weren't deemed bad enough to justify removal of the children or other action. Apparently the mother wouldn't allow anyone to visit the house. Shouldn't this have been a clue? Shouldn't her family members, whom she saw quite frequently, have insisted on going into the house once in a while to see what was happening there?

The truth is, people can do a lot of things privately, in their own homes, and no one will know. We Americans value our privacy. We love it. We can do what we want to do in our homes, and as long as it isn't blatantly illegal, we can get away with it. Neighbors and passers-by tend to turn a blind eye, even if things seem a little off. That's how family violence (spousal, child) and worse, child sexual abuse, domestic slavery, etc. keeps happening. The three kidnapped women in Ohio were living in that house for 10 YEARS and no one knew.

I think part of the solution is that there needs to be a bit more accountability. Neighbors checking in on each other. If you have a gut feeling that something is wrong in your community, with a family, following through on that feeling.The editorial in today's Globe discusses just this issue.

I keep thinking about the male partner in this. He claims he had no idea of what was going on in the house, including the birth of the most recent two babies. But clearly he was having sex with this woman, over and over again. Enough so that she became pregnant at least seven times. How could he have not known what was going on in that house? It sounds like he had some issues with marijuana. But would that allow him to ignore what was going on, for years?

The other thing I keep thinking of is the effect of all this on the kids who lived in that house. It sounds like the youngest two children are already terribly developmentally stunted. But how about the older two kids, who apparently went to school and were out in the world, seemingly normal?  It's beyond horrific to think what is going on in their minds. I've been trying to imagine what is going through the head of that 10 year old boy:

My mom has big brown eyes and a friendly smile, but something isn't quite right. Our house isn't like other houses that I've visited. Other houses smell like cookies, or bread, or perfume. Our house smells terrible, like poop. Part of the reason is that mom leaves dirty diapers out in the open, all piled up. She says she just got sick of washing them all the time. So she just quit.

She quit doing other things, too. She doesn't wash our clothes. She doesn't wash the dishes. She doesn't wash anything, really. So my sister and I have to go to school in the same dirty clothes every day.

I think it has to do with the babies. Things were pretty much okay until a few years ago, when the first baby came. Mom was worried that Dad would find out about the baby, so she kept the baby hidden, and stopped doing much of anything. Then a few years later, the second baby came along. She told us that she was just babysitting those two babies, but we knew the truth. Now Mom was really worried. How could she hide two babies?

I mostly try to stay out of the house. I play in the yard as much as I can, or I go over a friend's house, or I go to school. Our house smells bad, and mom just doesn't act right. She loves us, I know that for a fact, but she has been acting pretty weird lately. It finally got so bad, and the baby was crying so much,  that I asked my friend's mom for help to stop the baby from crying. That's when everything changed. The police came, and took all of us out of the house. Now we live at a different house. At least it doesn't smell. 

Saturday, August 09, 2014

Summer: Part 2

(continuation of Summer: Part 1)

I had been waiting in and around the hospital all day during Arnie's surgery, and I was exhausted. I wouldn't be able to see Arnie anyway for hours since he was in recovery and was pretty out of it. I decided I would wait until Saturday to see him, and headed home. I think he might have called that night, but I might be imagining it.

Saturday morning, I headed back in (during this whole process, I became very adept at driving into the Mass General which is in a rather inconvenient location in Boston). Arnie was in the surgical ICU, mainly because his blood pressure was unusually low, probably due to some meds they gave him during the surgery. Again I lose track here, but the next time I visited, Jordan was with me. Not sure if it was Sat. or early Sunday that they released him to a regular room, and White 7 (White Building Floor 7) became our home-away-from-home.

Arnie wasn't taking in anything orally for about 4 days because they needed to let his intestines/stomach rest and recover from the surgery. He was able to walk, so we took many walks around the floor. The nurses and other staff were amazing, caring, helpful. Arnie's spirits were high. Jordan and I visited him twice, sometimes three times per day. By Wednesday, he was taking clear liquids, and if he was able to tolerate a full liquid diet (thicker liquids), we were hoping he could go home for the 4th of July.

On Thursday morning (the 3rd of July), he was craving two things: a Coke, and a vanilla milkshake. His surgeon laughed and said he could have some Coke as long as his NG tube was still in (nasal-gastral tube). He had a few sips, but said it didn't taste as good as he remembered. Then I bought him a vanilla milk shake, and he had some sips of that. He was now on "full liquids" which meant soups, jello, smoothies: anything that he could drink through a straw. He was released, and we went home. It was the evening of the 3rd of July, but none of us felt like going to see the fireworks. We were all exhausted.

On Friday, he really wasn't feeling great. He felt like he had reflux or heartburn, and was very uncomfortable. Something just wasn't right all day. In the evening, he had a small amount of vomiting. That was one of the signs that something was amiss. He called the surgery service and they said he'd better come back to the hospital. So at 10 pm that Friday night, we all climbed into the car and drove back to Mass General ED.

The doctors ran some tests, and he was admitted for observation for 24 hours. Jordan and I headed home at 4 am. Driving back home at 4 am was the strangest thing I've done in a long time.

The next day, it became clear that Arnie wasn't going home after 24 hours. He was still very uncomfortable, and he had started getting very violent hiccups that wouldn't stop. He was back on an IV and wasn't allowed to take anything orally again. He was very weak. This time, Arnie's good attitude had faded. He was frustrated and angry. Nothing was really wrong physically: there was no blockage or infection, two things that they were worried about. It was just that his body wasn't ready to process food or even liquids yet, and he had to wait for his body to heal.

This time, the hospital stay was torture. Arnie was miserable. The hiccups came and went. When he had them, he couldn't sleep, so he was exhausted. Sometimes the hiccups went away, and he tried to sleep during those times. Jordan was at day camp that week, so I spent most of my days sitting and visiting with Arnie at the hospital.

Each day, in addition to walks around the floor, we would bundle Arnie into a wheelchair and take him outside the hospital for some fresh air. If Jordan was there, he loved to push the chair and feel like he was helping.

It's a bit of a blur, but finally things started improving, and they started giving him tiny bits of clear liquid. Then he moved to larger amounts of clear liquids. The hiccups were subsiding. Things looked good, so they released him to home (on Friday July 11) but still on clear liquids after 2 full weeks in the hospital. He was exhausted and weak and depressed.

Arnie was glad to be home, and slept a lot. His "meals" consisted of different liquids: broth, jello, juices, and something called Ensure Clear (yum). He basically drank his meals and then slept. This went on for several days. They had instructed us to continue the clear liquid diet for a week. I was starting to worry that this wasn't providing enough nutrition for him. He was so weak and tired, and had lost close to 30 pounds.

On Monday we went to see Arnie's primary care doc, who agreed that he needed more to eat. We started with very soft, high protein foods like Greek yogurt and scrambled eggs. It felt good to be able to give him real food finally. Within a few days, he was eating almost everything, including some chicken and fish. The only thing we were avoiding was things with fiber (uncooked fruits and vegetables, and whole grains), as this would be too hard on his healing intestines.

I know this is way too much detail about diet and such, but that was our life during this time. What is okay to eat? Will his body be okay with this food, or will it reject it again? Will he have to go back to the hospital?

So this pretty much takes us to today. Arnie has now been home for 4 weeks. He is doing a little better every day, and slowly regaining his strength. He is still tired, and isn't sleeping as well as he'd like. He is slowly regaining his personality and sense of humor. He is now able to read and concentrate, things he couldn't do a few weeks ago. He was hoping to go back to work part-time, but that hasn't worked out, so he will start back full-time during the last week of August. It's really hard for him to be out of work for so long. Arnie loves his work, and not working is very difficult for him.

For me, it has been so hard seeing him struggle with his recovery from this surgery. He has had a number of surgeries over the years, but I've never seen one take such a toll on him. My personal opinion is that the two weeks he spent without receiving any nutrition to speak of was really hard on his body. He was receiving fluids and medication at that time, but no nutrition. I think that's hard on one's body.

The other thing I'm really not happy with is that the hospital staff are putting the blame on us for the need to be re-admitted to the hospital. In reality, we followed their instructions and he only took in things that went through a straw. I believe that he really wasn't ready for a full liquid diet when they released him, and that he needed more time to heal. Having to go back into the hospital was demoralizing and made his recovery so much harder. I'm not sure it could have been avoided, but I wish the second hospital stay hadn't happened, and I wish they didn't insist that it was something that we did that caused it.

Finally, I'm proud of myself for staying strong and handling everything during this time. It's not what I would have chosen for this summer, but I did it. In addition to all this, I had to deal with the upstairs bathroom construction which took twice as long as it should have. I am hoping to take myself on a little vacation at some point in the near future to relax and rejuvenate.

Many, many people were so helpful and supportive during this adventure, and I really appreciate all the emails, calls, texts, food donations, and everything else that people did for us. I think we are nearing the end of this incident as Arnie gets stronger and recovers, although I think it may take months until he is really himself again.

Thanks for reading this very long 2-part post.
 




Friday, August 08, 2014

Summer: Part 1

This has been a very strange summer.

It started out fairly normally. As we often do, we started the summer with a family vacation that includes my extended family (parents, brother and sister-in-law and their kids). This year, we were heading to Nantasket Beach, a vacation spot on the south shore of Boston at which that we'd spent every summer as kids. It was going to be a very nostalgic vacation.

Back home, we had arranged for our upstairs bathroom to be redone during this time to minimize the inconvenience of being shower-less for a number of days. The plan -- to which now I just have to say "man plans, G-d laughs" -- was that Jordan and I would stay with the family in Nantasket and Arnie would head back home mid-week to deal with the contractor and the bathroom while he worked, and that he would be with the family on the weekends.

Everything started out fine. And then it didn't.

On Wednesday, which was my birthday, Arnie called and said that he went to the minute clinic in town because he was feeling lousy. We both had colds, so I wasn't that surprised, but then he said something about needing more testing. "What?" I was trying to understand. Something about blood in his stool. Anemia. "What?" I was still very confused.

After a few phone calls, it became clear that something else was going on besides a cold. Arnie had blood in his stool and he was anemic. He was at his regular doctor's office, and he was going to need an upper GI at our local hospital. I needed to head back home to take him to the hospital for the test.

I quickly threw everything into my suitcase. Jordan decided to go with me. Luckily it is less than an hour between Nantasket and home.

I actually can't remember what happened next. The next thing I remember is taking Arnie for the upper GI test. When it was over, we met with the GI doc. Arnie had a "bleeding nodule" in his intestine which was the cause of the blood in the stool and the anemia. This needed to be removed. The doctor thought it might be able to be done laparoscopically. He was going to check with the surgeons there. In any event, Arnie wasn't leaving the hospital. He was admitted.

Again, I don't remember much except that Jordan and I visited him a few times in the hospital, and we arranged with my brother to meet halfway so Jordan could re-join the family the following day. I was staying for the duration.

Arnie and I waited much of the next day (Thursday) in his hospital room. Eventually, the doctors decided that Arnie needed a more specialized surgeon, and that he needed to be transferred to the Massachusetts General Hospital. Finally, in the early morning hours, he was transferred. I headed over there in the morning. We met the surgeon, Dr. Ferrone, who would be performing his surgery. She was setting up a team for the surgery, and didn't know when it would all come together. Suddenly someone came in and said: it's happening in 15 minutes.

This was Friday. Arnie was in surgery from around 1:30 pm until about 7:00 pm. I waited in the family waiting room, walked around Boston, and waited some more. I sent text updates to family and friends. At around 5:30 or 6:00 one of the nurses called to say the operation was almost complete and was successful. It wasn't until after 7, though, that two young surgeons came to speak with me.

What Arnie had is called a GIST: a gastrointestinal stromal tumor. This kind of tumor is rare, and it's more common in people who have NF1, which Arnie has. They got all of it out, and hopefully he wouldn't need any follow up.

Little did I know that this was just the beginning of this journey.

Monday, May 12, 2014

Next steps

It's been over five years since my breast cancer diagnosis. At this time five years ago, I was undergoing radiation therapy, and starting on tamoxifen, a drug that has been proven to decrease recurrence of breast cancer. I've been on tamoxifen for five years. Now it's time to plan out what to do next. 

With cancer, you always think it's over, and it's not.

The issue at hand is that breast cancer can be a very tricky cancer. Even if discovered early and treated appropriately, it has this nasty tendency to come back in a much worse form. As an article in Cancernetwork.com puts it, "although women with early-stage hormone receptor-positive breast cancer have low recurrence rates initially, they have a constant and unrelenting risk of relapse that extends up to 15 years despite the use of adjuvant therapy." (italics mine)

The fact is, up to 30% of women have their breast cancer come back as Stage IV: metastatic disease. There is no cure for Stage IV. You can live with it for a while -- maybe even a long while -- and there are many treatments to try, but eventually, you will die from it.
Estrogen receptor (ER)-positive breast cancer is unique among common solid tumors in that no patient can be considered cured, and recurrence rates remain almost constant for up to 20 years. - See more at: http://www.cancernetwork.com/oncology-journal/duration-aromatase-inhibitor-treatment-breast-cancer-role-carryover-effect#sthash.LZIJaamQ.dpuf
Estrogen receptor (ER)-positive breast cancer is unique among common solid tumors in that no patient can be considered cured, and recurrence rates remain almost constant for up to 20 years. - See more at: http://www.cancernetwork.com/oncology-journal/duration-aromatase-inhibitor-treatment-breast-cancer-role-carryover-effect#sthash.LZIJaamQ.dpuf

Sorry to be so harsh, but it's the truth.

So I've had the surgery and the radiation and taken the hormone blocking medication (tamoxifen) for the required five years, but that still may not be enough to prevent it from coming back. So that's why I headed back to the hospital last week. To see what the plan should be for the NEXT five years.

Just going to BIDMC is always kind of strange. They use a particular antiseptic hand wash in the bathrooms, and the acrid smell pulls me right back to five years ago.

I made my way up to the ninth floor, to hem/onc, to meet my new oncologist Dr. Lowell Schnipper. This is my third oncologist in five years, and the first time I've had a male. He's an older gentleman, and he had a very kind, gentle way about him which I really appreciated. He didn't beat around the bush. He is concerned about the blood clot I had in my leg last year, and worried that if I continue on tamoxifen, this might be a problem in the future. Also, he talked about research that shows that using tamoxifen and a different medication called an aromatase inhibitor in sequence has better outcomes then tamoxifen alone. That means that to keep possible future cancers at bay, it's best for me to continue with a different drug, an aromatase inhibitor, possibly for the next five years.You can read more about aromatase inhibitors (know as AIs) here.

The issue now is whether I am pre-menopausal or post-menopausal. They want to switch me to the aromatase inhibitor, but I can only take if if I'm post-menopausal. So suddenly I'm hoping that I am post-menopausal (although I don't think that I am based in my family's history of late menopause). If I'm not, other options would be to have my ovaries removed which would make me postmenopausal, or to take a monthly shot of Lupron which would shut down my ovaries and then I could take the aromatase inhibitor. Either way it seems like tamoxifen and I are about to break up. (Not that it's been such a great relationship.)

So the current plan is that I go off tamoxifen for 6 weeks, then get a blood test to measure my hormones, and then we will have a better idea if I am pre- or post-menopausal. Then we will make a decision what to do next.

So I'm sitting with this doctor, and all of a sudden I find myself saying to him "I know that breast cancer can come back in a much worse form. I have a 14 year old. I need to stay alive for as long as I can."

All of a sudden I'm talking with this person I just met about life and death. It's really kind of freaky.

By the time I got home, I was emotionally exhausted. It really never ends.