Would You Rather Be Shot Or Jump Off A Cliff?

80’S CANCER JAM OF THE DAY:

Go ahead. Take a couple weeks before you give us your decision. It can wait until after the holidays. Now keep in mind that 2 out of 10 women actually survive being shot, while the whole cliff thing is really sketchy…not much good going on there. But…and this is a big but…being shot can lead to all sorts of complications, depending on where you choose to take the bullet. So you may just wish you were dead.

This is something like the conversation I had last week with my oncologist, slightly paraphrased of course. Yes, I’ve finished radiation and been issued my platinum invitation to board the Tamoxifen train. Toot! Toot! He actually turned to me at one point and said “Have you done any research about Tamoxifen?” I just looked at him with wide eyes and replied “Really?”. He quickly realized what a foolish question that was and chuckled softly. “Oh yes, what was I thinking? Go ahead, tell me what you found.”

Of course I had been feverishly burning up the internet for days trying to tease out minute details about survival and recurrence statistics from mountains of muddled data. And let me tell you, they make it next to impossible to find “the bottom line”, which in my book is the absolute survival advantage in those who take this drug. I don’t care about relative risk or any other statistical shenanigans that pass for science. I was finally able to get a 10-year absolute survival difference of 10.9%, meaning that of 100 women, 11 more will be alive in 10 years if they take Tamoxifen than if they don’t.

I told the oncologist about this, and he agreed, saying that the odds might be slightly better for someone my age with my cancer, perhaps 12-15% greater survival. I’m not sure where he gets those numbers, as I was unable to find them. However, I also told him that I had serious concerns about the potential side effects of the drug versus the benefit. Common side effects include: hot flashes and night sweats, mood swings, depression, joint aches, cognitive difficulties (such as forgetting words), weight gain and headaches. Rarer side effects include blood clots, stroke, and uterine cancer.

Now, I don’t know about you, but I am just not dying to get on this train. First of all, I am deeply mistrustful of drug studies. I’ve taken enough research courses to know that data can be manipulated to say just about anything. I also know that the FDA does not require these companies to submit data showing adverse outcomes or data which doesn’t support the benefit of the drug. You only have to look at the long list of drugs which have been approved and later pulled from the market due to serious, often fatal events, or lack of efficacy to realize that you can’t always count on the “peer-reviewed research”.

Those concerns aside, I am feeling healthy for the first time in a year. I ran 8 miles last week. My color is good, and my hair now looks like a cute, short style instead of a chemo-ravaged patchwork quilt. I don’t want to be sad and have achy joints. I don’t want to be fat and wringing wet every morning. It feels very unnatural to take a body that is on the mend and feed it a drug that wreaks such havoc. The doctor said we will deal with whatever side effects come up, meaning he can give me different pills to add to the first pill.

I think the photo below shows a much better idea of what can be done with Tamoxifen bottles and a little creativity. I have to give credit to “The Sarcastic Boob” at http://thesarcasticboob.com/2012/08/16/ten-things-to-do-with-tamoxifen/ for this hilarious post.

tamoxifen boobs

All kidding aside, I truly believe in the ability of the body to heal if given the chance. I’m not against medical intervention when necessary, but I don’t think it’s natural to have zero estrogen, which will be the effect of the Tamoxifen. I understand that my tumor was fed by estrogen, but I’m not sure if it was that simple. Cancer is a very complicated, multifactorial disease. My fear is that the cancer will outsmart all of these outside interventions and come back more ruthless than ever. I expressed this to the oncologist, and he had to agree that if we use Tamoxifen and the cancer metastasizes anyway, it will likely be very aggressive and difficult to treat.

So…here I am again, at the edge of the cliff with a 9 millimeter in one hand. I think I may just lay the gun down and back away slowly. You’ll be the first to know.

 

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8 thoughts on “Would You Rather Be Shot Or Jump Off A Cliff?

  1. I know exactly where you’re coming from. I have the script for tamoxifen and will start towards the end of January after our summer vacation. Doc said go away and enjoy ourselves first because the first 6 weeks can be tough but then usually settle down. Gee, I can’t wait to get started……
    Like you, I’m scared of the side effects. Stats mean nothing to me.. I’m always in the 1% who get the rare effect, including the antibiotics I was just on! Achy and stiff joints and muscles….such a rare occurrence….but not for me! However, my tumor was 95% ER+; tamoxifen is actually my front line therapy. I remember the days before it was known that many breast tumours contain estrogen receptors, and before tamoxifen existed and before it was subsidized by government. I don’t want to take tamoxifen, but for me it is not a choice. I am so grateful I live in this age. I’ve had the chemo to get rid of any nasty non-hormone receptor positive cells and mastectomy to remove risk of new breast recurrence…my oncologist says that is the walls, and tamoxifen is the roof – we can live without walls but not without a roof, metaphorically speaking. He balked when I asked if I can have my uterus out to prevent uterine cancer…thinks I’m a surgery junkie 😄 But low risk of side effects mean nothing to me…I want no risk.
    Anyway, I’m going to go into this with a healthy, positive attitude and pray that the side effects of keeping cancer away are not too onerous. All the best with your decision, I know how hard it is and you have to do what’s right for you x

    • My cancer was also 95% for both ER and PR. It certainly is a lot to consider. I’m seeing a new highly-respected integrative MD Feb 4th, hopefully sooner if he has a cancellation. He treats lots of breast cancer patients, so I’m anxious to get his take on this. But you’re right, you have to do whatever lets you sleep at night. Have a lovely time on your vacation:)

  2. I couldn’t agree more about the whole benefits vs. side effects. I am taking Letrozole(Femara) and think a lot about the long term side effects. I also have a deep mistrust of big pharma and think I too may reconsider taking the drug in the future. By the way Lovin Lauper!!

    • Hey girl. Hope you had a happy Christmas. I can’t help but think that if they gave men these horrible drugs (your balls will shrivel up and you’ll get man boobs), something new and improved would come out immediately.

  3. I guess in your analogy, I opted to jump off the cliff! 🙂 I sympathize with your struggle. Like you, I researched and researched, and talked to everyone. In the end, as you know, I opted for not taking it (in my case, Femara). The side effects were awful and I didn’t want to spend whatever days I have left (be it 5 days, 5 years or 50 years) to be riddled with pain and loss of quality of life. I am now feeling better than I have in a really long time and believe that a healthier life style is the way to go for me. Whatever you do, listen to your heart about what’s best for you. I was influenced by others for a long time and it made the decision more agonizing. In the end, I am comfortable with my decision. But I certainly know how difficult it is.
    Happy New Year to you — and here’s to health and strength for us both in 2014!

  4. You’re right that sorting through research studies and statistics is a total brain ache. I’ve found so many contradictory studies over the past couple of years. All we can do is weigh the potential pros and cons for ourselves and do what we think is best, meanwhile making the most of the time we have and the things we enjoy. Cancer is extremely complex and as far as I can see we still don’t know the half of it and can’t explain why some people live while others go on to get mets and die, even from seemingly innocuous T1 tumours. We are all in a ‘feel the fear and do it anyway’ situation but no-one wants to admit there is still too much medicine doesn’t understand and can’t account for.

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