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?

Wednesday, June 11, 2014

I Didn't Know You Were a Doctor!

Ever since my diagnosis in January of 2013, I have been given tons of unsolicited medical advice on what cures cancer. Everyone I knew, and even didn't know, turned in to highly educated medical oncologists. Any herb, supplement, fruit and illegal substance has hounded its way in to my news feed or Facebook page. Everyone knew someone, who knew someone, who knew someone who was cured of cancer by smoking or ingesting cannabis. Which, is a fancy name for the very illegal substance marijuana (married to a cop here, folks!).  A sister of an acquaintance was cured of cancer by sprinkling turmeric on her food. I should eat the fruit of the tree on the tallest mountain, that sits next to the purple primrose on a Saturday evening at approximately 8:02 while standing East on my head in a country I cannot even pronounce because if I didn't know, that cures cancer. And there’s the ever popular “cancer foods” that I should eat which prevent cancer. Prevent? I think we are a little late for that. And my ever favorite- of course, the pharmaceutical companies do not want me to know any of this. It's a big conspiracy. 

 I wasn't aware of your medical degree! I didn't know you spent roughly 14+ years working on your doctorate specializing in oncology. I mean let’s break it down, shall we.

You did all this:

-Finished Pre-med or obtained your Bachelor degree which takes approximately 4 years 
-Went to medical school which averages 3-4 years 
-Enrolled in a Residency program for 3 years
-Then took a couple months to study for your Board to qualify for fellowship 

-THEN worked on your fellowship for 2-3 years focusing on oncology 
- And finally completed your Board examination in Oncology which can take about 6 months

Congratulations, Doctor!
 And in the meantime, you ran clinical trials on your cancer curing hoopla, which can take years to get to human trials and YEARS in human trials before becoming approved.

Um, hello, I have cancer. I am pretttttyyy sure if there was a cure, I would know it before you or your sister, brother, aunt, great uncle or second cousin would. And not that I am a doctor, but I got me one of those. A specially skilled, highly educated, CHIEF of Oncology at my hospital. He’s the big cheese. I think he would be greatly offended if he didn't know there was a cure for cancer before the rest of the civilian population.

There is no cure for cancer, I don’t care what anyone says. I don’t care what you read and I sure as shit don’t care what your momma told ya! Please, read this carefully: Every single cancer cell in each person’s body is absolutely unique. There are no two people with the same kind of cancer cells in their body. Each person reacts differently to the drugs they use to treat cancer. Because, that’s all they do- treat it, they do not cure it. Sometimes the cancer cells react accordingly to a drug and diminish with no metastasizes, which is great- however, a person with similar type of cancer could react completely differently and end up with metastasizes. There are a gazillion environmental factors to add in, genetics and so on and so forth. I can tell you of many vegans, vegetarians, HEALTHY women you have died from breast cancer. Even if one person was “cured” from the fruit of a Zabillybonbon tree that does not mean it will work for the next thousand people in line after them. Because, let’s say it together, everyone’s cancer is different!

Am I being a smart ass? Yeah, I am. I don’t mean to sound harsh, but have you ever heard of the saying “If you can’t say something nice, don’t say anything at all”? The same applies to this situation. If you yourself, have never been diagnosed with cancer, have never been through chemotherapy, the emotional tolls, side effects of radiation, the surgeries, the appointments, the heartache, the financial burdens- then you are not qualified to offer any unwelcomed medical advice to someone with cancer. How can you possibly know what it’s like unless you have been through it yourself? I know, I know, you’re just trying to be nice, and I get that, I really do; but seriously, if you don’t think I don’t know of, I don’t wish for- I don’t dream of a cure, you’re insane, because I think about it every second of every day of my life. It’s my reality. Not yours. If you want to do something nice for me, offer to cook a meal for my family during my upcoming double mastectomy, offer to help with the kids, drive me to an appointment, clean my house, offer anything other than medical advice.