My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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When Is Enough, Enough?

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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A 10 Year Sentence

Photo from cartoonstock.com

Photo from cartoonstock.com

Chemo sucks.  Radiation sucks, too.  But one thing I can say about them is that they are administered for a relatively short time.  Their effects can last far beyond the end of treatment but the hell endured during treatment ends soon after the last dose is given.

To prevent my cancer from growing any further, I have gotten a mastectomy with axillary lymph node removal, five months of chemotherapy, three weeks of radiation and a year of Herceptin infusions for my clinical trial.  The next and, I think, final method of prevention is Tamoxifen, a pill I need to take every day for the next 10 years.

Tamoxifen is a form of hormone therapy that is used for women who have a breast cancer that is estrogen receptor positive (ER+).  When a breast cancer is ER+ it means that it feeds off estrogen like cookie monster at an Oreo factory.  Tamoxifen attaches to the attaches to the hormone receptor in the cancer cell and blocks estrogen from attaching to that receptor, denying the cancer of it’s favorite treat.

photo from riverpharmacy.ca

photo from riverpharmacy.ca

Image from Susan G. Komen

Image from Susan G. Komen

The benefits of Tamoxifen can last long after the last pill is taken.  According to an article on the Susan G. Komen website “findings from a large randomized clinical trial showed that taking tamoxifen for an additional five years (for a total of 10 years) further reduced the risk of breast cancer recurrence and death [60]. For this reason, there is increasing use of treatment with tamoxifen for more than five years, especially among premenopausal women who cannot take aromatase inhibitors.”  That is why almost all women with ER+ breast cancer will be offered the pill.  It can also be used as a preventative for women who have not developed breast cancer but are considered high risk.

Side effects of Tamoxifen can include hot flashes, night sweats, vaginal dryness, weight gain, disruption of the menstrual cycle, risk of blood clots, stroke, cataracts, mood swings, bone loss and risk of endometrian and uteran cancers.  Premenopausal women are advised to not get pregnant while taking Tamoxifen due to potential harm of the fetus so using those eggs I harvested and saved is out of the question.

I have been experiencing hot flashes since my third chemotherapy treatment but they were starting to subside with time.  Ever since starting Tamoxifen, my instance of hot flashes and night sweats have increased.  I have also been experiencing insomnia for the first time in my life and/or restless, interrupted sleep, likely as a result of the the discomfort from the night sweats.  I try to wear light pajamas to bed and we now use a fan with the window open.  This has lessened the severity of the night sweats however I still wake up clammy but very cold…and hot at the same time.

I don’t know how long these side effects will last.  I hope that I will not have to endure ten years of waking up in sweat soaked pajamas.  I don’t think I could live like that.  The question is, do the benefits outweigh the side effects?  Oncologists seem to think so.

So far, I have served a month and a half of my Tamoxifen sentence.  Nine years and ten and a half months to go.

If you have been on Tamoxifen, what strategies have you used to combat the side effects?  Do they change over time?