My Little Bs Have the Big C

A Breast Cancer Blog For Young Women

When Is Enough, Enough?

7 Comments

AAN3PY 1950 1950s WOMAN SITTING IN FRONT OF FAN WIPING FOREHEAD VERY HOT

AAN3PY 1950 1950s WOMAN SITTING IN FRONT OF FAN WIPING FOREHEAD VERY HOT

I thought I’ve done it all.  Said yes to everything I could possibly agree to.  That there was nothing left to do.  I’d done my job and now I get to live a cancer free life.  But no.  It’s not that easy.

Three weeks ago, I met my new oncologist, Dr. Marlene Meyers at NYU.  She’s wonderful, caring and open to listening to me and my needs.  But, she suggested that, in addition to the Tamoxifen I’m taking, I also start on a regimen of Zoladex.

Zoladex, a form of hormone therapy is an ovarian suppressor.  The drug stops the ovaries from producing estrogen or as some doctors call it, “medical ovarian shutdown”, and can be used by women with ER+ breast cancer who are pre-menopausal.   It is given as a monthly injection.  So, what is the difference between Tamoxifen, and aromatase inhibitor and and ovarian suppressor?

Tamoxifen is a type of hormone therapy known as a SERM (selective oestrogen receptor modulator) and its job is to block the effect that estrogen has on tissue receptors.  Aromatase inhibitors reduces hormone levels but does not block estrogen from being produced by the ovaries.  Because of this, aromatase inhibitors will only work on women who are post-menopausal or who have had ovaries removed.  Zoladex literally shuts the ovaries down so that they are unable to produce estrogen.  The only other way to prevent the ovaries from doing this would be to remove them altogether.

While Zoladex, in addition to Tamoxifen (according to my oncologist) prevents recurrence by only a few statistical points, she said that it did very well in trials for women age 35 and younger with ER+ and node negative tumors.  While I do not “have to” take this drug, she is strongly recommending it.

I have done some basic research, and maybe I’m not finding the latest papers that have been released but, according to the results of the ZIPP trial, “although the effect of goserelin was smaller (and not statistically significant) among women who took tamoxifen, a difference in risk of 2-3 percentage points in absolute risk at 15 years might be important, given the high incidence of early breast cancer. This would correspond to treating 33-50 women with tamoxifen and goserelin to avoid one woman having a recurrence, new tumor, or death. Indeed, the number needed to treat at 15 years was 18 in women younger than 40 years who also took tamoxifen.”

As I think I have mentioned before, my aunt Vickie works in medical publishing so she has been asking around for second opinions for me.  One has come back so far stating that she is in agreement with my oncologist and that Zoladex would be beneficial for me.

So here’s the thing.  When I started on Tamoxifen, the side effects were pretty harsh: terrible night sweats (I’d wake up several times during the night completely soaked through.  My side of the bed felt like an overactive heating pad), constant insomnia (I was a walking zombie, with the moodiness to match) and hot flashes, which I still suffer from on a daily basis.  I am terrified by the side effects that will be accompanied by Zoladex.  While they are not permanent, because the injection is given monthly, I would have to live with any negative effects for at least a month.  This could mean more night sweats, more insomnia, more hot flashes, loss of sex drive (what sex drive?)…this doesn’t include the osteoporosis, bone pain and depression.

This all sounds awful and it might be (it also might not be that bad) but there is also the psychological issues that have come with receiving this information.  I was once again thrown for a loop with information I was not expecting.  I knew I was going to have to take Tamoxifen for 10 years but now I need to (should) be on yet something else?  When does it end?  When is enough, enough?  When can I say, “I’ve done six months of chemotherapy, fifteen sessions of radiation, a year of herceptin and 10 years of Tamoxifen, changed my diet, got back into exercising…and that’s enough!!!!”  I will never get to say that because there is always more.  More.  More.  More!!!  And I’m done!  I don’t want to do anymore!!!

But…I swore on day one that I would do everything in my power to make sure that I beat this thing.  What if I decided not to take the Zoladex and the cancer returns?  Will I always wonder if I had just done one more thing, if that would have been the thing that saved me?  Am I willing to do this, suffer all of the side effects to ensure I will be here to watch Oliver have his own children?  Isn’t that the definition of a mother?  To do anything and everything necessary, to sacrifice the self for her child?

These are the questions I’ve been battling lately.  There is no right answer.  There is no good answer.  I just need to choose.  Have I done enough?  Can I do more?

Have you been offered a treatment that you weren’t sure you were going to take part in?  What was the struggle for you?

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7 thoughts on “When Is Enough, Enough?

  1. It’s amazing how protocols change based on different studies. Just recently I read something about aromasin being more effective than Tamoxifen for younger women (slightly). But I’ve always thought aromasin was strictly used for post-menopausal women. What you mentioned here sounds interesting and I can’t wait to ask my Onco about it. I am thinking of removing my ovaries in a few years (while still on Tamoxifen) anyway. Just did a hormone test and my estrogen level is to the roof – not sure what this means; I guess my ovaries are functioning? Too bad I can’t use them to get pregnant.

    I see your point about never being finished. Funny how most people think we are “done with cancer,” ha ha! We own this body for life. The never-ending treatments get tiring sometimes but I think you may get used to them with time. I know, it still sucks.

    I am sorry you are having some side effects with Tamox. I am only experiencing dryness (down) and some serious mood changes, and most recently joint pains. I hope your body gets used to the pill and you feel better with time. See how you do with that other drug. I do think Tamox is the most important pill out of the two. I do know what you mean about looking back and wondering if you should have listened to your doctor. Ugh. I feel the same way you do, so go with your instincts.

    I am going to say what I usually don’t listen to when others tell me. Try not to focus on what hasn’t happened yet. Hopefully, you will react well on this new drug.

    Wishing you good luck with it all, friend! xo

  2. I’m sorry to hear about the latest challenge. It really is never enough, it seems. There will always be something else that will blindside you, and this is a big one. A friend of mine recounted how distraught she became while bra shopping after reconstruction, and how unexpected that was (a small thing, obviously). Challenges and surprises big and small will continue to come, which really sucks. There’s no way to be completely prepared or feel comfortable.

    I’ve been putting off starting my Tamoxifen regimen, even though my oncologist wanted me to start right away. I have another surgery coming up, and I can’t bear the thought of dealing with any side affects during recovery. And a small part of me is skeptical–how do I know for sure this will help me? They don’t even know what caused the cancer. I know we’re dealing with probabilities, not certainties, and I will start taking it soon. I just don’t feel like a month or so will make a difference in the (one hopes) long run.

    Peace & strength–
    A.

    • I can totally see that bra shopping can be difficult for some people! It’s no small thing.
      I am always skeptical about treatments and I think that’s because nothing is a guarantee. And if you want to wait briefly to start the Tamoxifen so you can heal from your surgeries, that sounds reasonable to me. But I’m not a doctor so it might be worth asking why they want you to start right away. I was given a month to heal after chemo before they started me on it.

  3. Hi, thanks for sharing your experiences. Yes that is a huge question – should you, shouldn’t you? I work with Tamoxifen patients every week at a Cancer Charity women talk about making these very difficult loaded decisions with great pain. You mention “What if I decided not to take the Zoladex and the cancer returns?” I am in now way here to influence your decision, it’s your life…but you know it can be other therapies that help keep cancer at bay? I think the struggle comes about when people don’t know what else they can do to help themselves when they decide not to take a prescribed drug. Vit D high doses, acupuncture, homeopathy, reflexology all help to boost your own immune to help fight the cancer. I wish you find peace coming to a decision and best wishes on your journey. x

    • I have done research about other therapies and my oncologist has recommended acupuncture. I am also moving toward a more plant based diet and more exercise (which is hard with a full time job, cancer treatment and a little one). But thank you for reading. Hopefully these side effects aren’t forever.

  4. Acupuncture is great! Also changing to a plant based diet – it can only help you heal. Good for you!

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