Monday, June 16, 2014

It’s My Body and I’ll Hack Off My Boobs if I Want To

Having metastatic breast cancer . . . presented at initial diagnosis . . .  at 30 . . . with a genetic mutation . . . is a few things:

1.    Rare.

2.    Unique.

3.   Difficult.

4.     Sucky.

Rare: to be diagnosed with breast cancer under 40 accounts for only 7% of the population with breast cancer. Unique: About 6-10% of patients are Stage IV (Metastatic) at their initial diagnosis. Difficult: It can difficult to treat and manage metastatic disease and the median survival rate is 2-4 years and even lower for women under 40. Sucky: I am this huge ball of rarities that no one really seems to know what to do with. I don’t fit in to the “norm” metastatic breast cancer group, young cancer group or breast cancer group. It is very isolating and frustrating.

After I met with the breast surgeon on Thursday I felt defeated and worn. I have been in this journey for 18 months. I am coming upon the average survival rate ranges for women my age. It has left me feel very anxious most days. I have prepared myself for 18 months to have a double mastectomy. Ever since the primary tumors in both of my breasts no longer showed up on the CT scans I was told by my oncologist that after a few stable (no new lesions/progression) scans that I could have a double mastectomy.

See, here’s where the gleaming bag of rarities comes in. Since I was initially diagnosed Stage IV, I was never offered a double mastectomy to begin with because I needed to start chemotherapy right away. We needed to reduce and try to stop the progression of my cancer. Simply removing my breasts would not work. The other 90-94% of breast cancer patients who are Stage IV, more than likely already had some type of surgery. They had been treated for breast cancer prior to their Stage IV diagnosis. It was hard to “fit in” with them. Not having gone through that part of breast cancer made me feel as if I was the new kid with glasses in a 3rd grade class. I looked at the double mastectomy as a goal I worked towards. Fun goal, huh? In my mind, reaching this goal meant that I was doing well.

“Why?” seemed to be the question of the day with my breast surgeon. Why give a woman whose disease has already spread a double mastectomy? She was very against me having a double mastectomy. She in no way agreed with my oncologist, even laughing at the research he quoted to me. She was very thorough and explained her own research stating that in another country there was a study conducted with women with metastatic breast cancer. The trial had some women receive a bilateral mastectomy and women who did not and they followed their progress for about 2 years. The research claimed to have shown absolutely no benefit to having surgery. She told me the surgery would not benefit my quality of life. All I heard from that was “You are going to die anyway, so what’s the point”. I was not worth the surgery. She explained the risks involved in the extensive surgery trying to almost scare me out of it.

Besides a couple of the very selfish reasons I listed above, I also have some very reasonable rational. When you are diagnosed with Li-Fraumeni Syndrome it is suggested that a woman with breast cancer not only has the breast with cancer removed but that she also has the other “healthy” breast removed. The instance of having a cancer return or developing a secondary cancer is very high for me. This would eliminate the chance of having cancer return to my breasts. Secondly, while it is controversial, there is research that suggests a woman with metastatic breast cancer that has a double mastectomy can improve her prognosis by as much as 2 years. Although, according to the breast surgeon, that study is wrong.

Lastly, and most importantly, when I started this journey I made myself a little promise. See, when our angel, Shannon, was born we didn't know she also had a congenital heart defect. The neonatal cardiologist met with myself and Steve and told us that she only had a 1% chance of surviving surgery. We made the hardest decision of our lives by removing her from life support. The “what ifs” have plagued me, and I always wondered “What if she was that 2%”, “What if she had made it through surgery and lived”. I felt as if I gave up, I let her die without knowing if she would have made it through surgery. I vowed to never do that again. I promised myself when I was diagnosed that I would fight, no matter how small the percentage, no matter how slim the statistic. If this surgery could possibly extend my life, even if it was by 1 day- I would do it.

Even with all of the reasons I gave, she still is against me having a double mastectomy. Ultimately, (she said about 10 times) it is my decision.

I thought I was going to break down in the office. I was so upset. I felt officially defeated by this stupid cancer. I was so confused by the disagreement between the two doctors. It just didn't make sense. If someone told me at the beginning that surgery would never be in my cards- so be it, I would have accepted that. But I have been told for months not only could I have it done, but that it would potentially improve my prognosis.

After researching the buh-jeebezes out of everything she told me, I will say she still doesn't have me convinced that it won’t help my overall prognosis. Apparently, a bi-lateral mastectomy in a metastatic breast cancer patient is very controversial. Some research says it benefits the patients, some says it doesn't. There are only a handful of studies conducted regarding this subject so it is very hard to say whether is actually extends life or not. I decided to ask some other women who are also Stage IV to see if there is/was anyone in a similar situation to mine. Not too many. One woman with Stage IV breast cancer actually sent me a message telling me to stop worrying about my breasts and worry about saving my life. Another told me that the surgery is not something I should take lightly. And one even suggested I am not undersdtanding the toll it will take on me. Really?! I am trying to save my life! I know the risks involved. I know what a traumatic surgery this will be, emotionally and physically. I would not voluntarily get my boobs hacked off for the hell of it. I feel that this I something that must be done to live a longer, fuller life with my family. Do you really think I care if I have boobs or not? Um, no. To say I was surprised by some of the responses is putting it lightly. Most of the women were very supportive of the “It’s my body and I’ll do what I want” approach and suggested me getting a second opinion.

The surgeon ordered me to have a breast MRI and mammogram. She wants to see if there is any evidence of cancer in my breasts that other scans might not show (she isn't convinced that the CT scan is very accurate). She wants to present my case to the other breast surgeons and oncologists at the hospital’s weekly conference. This would be a second opinion of sorts. That will be the determining factors of whether or not I will have the surgery. If that isn't stressful enough, I also have my quarterly scans. This time it’s my CT scan and bone scan. Scans = Scaniexty. More anxiety . . . yay.

It’s just so completely frustrating. I just want a shot at living longer with my family. Is that too much to ask?


  1. No, it's not too much to ask. You have every right to fight with every last fiber of your being and every treatment that you think will help. Is it going to hurt for you to have the surgery? Other than the obvious pain from any surgery, in the long run, are you going to be hurt or is your cancer going to be worse for having the surgery? As long as you aren't shortening your chances, then do whatever you feel is best for you. YOU know yourself better than any surgeon or oncologist. BE THE 1%! Sending prayers that your scans go well and that you find peace with whatever decision you choose.

  2. I also presented stage 4 at diagnosis but I was 43 (last August). At first I was also dead set on having a bilateral mastectomy. In fact there is a national trial going on now that will track stage 4 women who do and do not have surgery. A computer decides if you go under the knife
    So the decision is out of your hands. The study is to determine what if any benefit it has on quality of life and if it's prolonged.

    At the end of the day and after my scans showed my tumors have shrunk I decided not to do surgery ....for now. I'm at risk for blood clot and I'm terrified of a big surgery. Do what feels right for you. If surgery is what you want then do it. Even if it means finding a surgeon that agrees with you.

  3. I wish I had the answers for you and everything was clear. And yes, you deserve as much time - actually I wish by some twist of fate, since you are so "rare" that you would be the "rare" survivor for decades to come? I know this isn't much help - always remember, when these things come up, there is usually a good reason. For example, got frustrated you were running late because your kids wouldn't get it together. But you are on your way and see an accident at an intersection that further delays you but you think "Gee, if I was on time, I would have been in that - maybe."

    The roadblocks or brick walls - they are there to keep the others out - not us! (((HUGS))) Elizabeth

  4. My oncologist told me that there was no reason to remove my diseased lymph node because the cancer was elsewhere-- it is, but also there are probably little cells floating around in my blood stream. So, because of this there was no reason to do surgery. She said the same thing about studies not showing any time added to length of survival. I had trouble understanding the logic behind this because, to me, the fewer cancerous cells in your body the better, right? But no, ultimately I came to the conclusion that length of survival time is directly related to how a person's cancer responds to the drugs given. People that gain "no evidence of disease" status sometimes don't survive as long as people with stable disease because their treatment fails. This is no easy decision. I know how I felt about my breast -- get the killer of me! Each individual responds differently so how would anyone know if surgery would not prolong "your" life. I wish I could help you. I wish I could help us all.

  5. I would talk to your oncologist and ask for a referral to a different surgeon. She does not sound like she respected you at all. I am so very sorry that you were treated so shamefully.

  6. Hi! I am 33 when diagnosed with metastic breast cancer. I was also never a candiate for surgery or radiation! I agree...go for a second and even a third opinion. Keep digging until you find what feels right for you! And your not alone. I know it can feel like that but you are not alone! Keep shining!

    1. Thanks Jaime! You keep rocking on as well, sister!

  7. I am so sorry you have yet another stress to deal with. I think presenting your case to the board is a good idea. I know you are upset but it sounds like the surgeon really believes her point of view and in her mind is looking out for you. I am sure you know but a mastectomy is nothing to take lightly (and of course you don't). I just had a single breast removed, was young, healthy and very athletic and I had axillary web syndrome, 3 months of intense physical therapy and I still have pain, numbness and many issues. The recovery from a double would be intense. I hope and pray that the right decision is reached and one that you feel good about. Because in the long run it is your decision. God bless.

  8. I would be happy to offer you my opinion, for what it’s worth. I’m older, but much like you this damned "journey" has found me in some "rare" stats as well. I became metastatic to bone two years after my first breast was cut off, then developed IBC in my remaining breast a year after that. I've finished chemo again, and my last breast is coming off. One stage IV woman actually said that I was killing myself if I have another mastectomy. Unbelievable. Unlike you, I didn't ask for opinions.

    My breast surgeon has a very different attitude than the one you have been dealing with. Everything we have to endure at this stage causes pain, numbness and a lot of other issues, that’s the way it is. The combined responses I’ve had to two rounds of chemo, two rounds of rads, one mastectomy and one spine surgery has left me with a ton of issues, but I’m still here. That’s what matters. I deal with the rest just fine, I only swear on occasion. :)

    My breast surgeon says simply, studies are studies, there is no factual stats to support either theory at present. In his opinion, remove the load, let the drugs fight what’s left… perhaps it helps. His biggest concern was my frame of mind, I want it off, therefore it will be most helpful to have it off. My neurosurgeon feels the same, while some are given a cement injection to allow comfort in their remaining time, he went full bore and gave me a titanium cage, rods and screws in a seven hour operation. He told me that no one can tell him I'll be gone soon and that I deserve whatever they can do as much as anyone else. Bottom line for both my surgeons and my oncologist is respect for my wishes and the firm belief that there is always a possibility I'll be around a while, possibly a long while.

    We are all unique. Damn straight we are.