I’d Skip This Post If I Were You

This morning, my oncologist tasked me with making my hormone therapy choice.

I’ve been reading the horrors of Tamoxifen so I perked right up when I heard the word “choice”.

Here are my options:

5 years of Tamoxifen
Tamoxifen is a 33 year old and very contraversial drug which is either a life-saver or a menace, depending what you read.

Its known side effects include: blood clots, stroke, uterine cancer, endometrial cancer, shortness of breath, weakness, tingling, or numbness in your face, arm, or leg, difficulty speaking or understanding, vision problems, dizziness, increased tumor or bone pain, hot flashes, nausea, fatigue, mood swings, depression, headache, hair thinning, constipation, dry skin, loss of libido, weight gain, cognitive dysfunction, sexual dysfunction and more. Super Scary.


A 5 year Randomized Clinical Trial SOFT: Suppression of Ovarian Function Trial (IBCSG 24-02)
If I chose this option, I would be randomly selected to receive one of the following:

  • Tamoxifen (see huge side-effect list, above)
  • Tamoxifen (see above) and Triptorelin (a drug that will suppress ovarian functioning and induce menopause with its own slew of side effects )
  • Exemestane (an aromatase inhibitor) and Triptorelin (see above)
    Apparently Exemestane has been shown to be 2-4% more effective in decreasing recurrence and spread of breast cancer in post-menopausal women. Unfortunately, its side effects are, anecdotally, much more severe than Tamoxifen’s. Super-Duper scary.

And don’t even ask what’s behind door number 3. I made that mistake.

I guess being a chubby, depressed, moody, sexually dysfunctional air-head beats being dead…
If I don’t get the deadlier side effects, that is.

As my good friend Mary would say, awesome.

About Andrea

Andrea Ross was diagnosed with breast cancer October 6, 2009 and intends to survive and thrive. You can read more from Andrea here.

  • Linda W

    Holy cow..how does one make these decisions, I was hoping tomorrow was the end of it. I hope someone who reads this might add some personal experience, All I can say is my friend took it with minimal side effects..wonder if you can just stop it if there are. I guess everyone is different, drug reactions are probaby a wide range but still…. ..seems to me like they don't tell you everything upfront in this process, like you just get to a milestone and are presented with more…cheeeeeeesh…. I am afraid to ask but I take it door # 3 is taking nothing…don't reply.
    Anyway, sorry to hear this, my wish is that you may get through tomorrow and the next week as best as you can, even if it is hibernating on the couch, one day at a time. (P.S Lots of people care …… P. s venting, anger, rage…all of course OK.)

  • Thanks, Linda.

    I'm intending to accept only the good effects of all these treatments and skip the big bad ones (and the small bad ones, if possible). I've been extremely healthy, happy and active through all the surgeries and most of the chemo. And I'm intending to continue that success through the 6 weeks of radiation, the five years of hormone therapy and for a long, happy, long time afterwards.

    I just bumped into a neighbour who went through HER2-positive premenopausal breast cancer treatment 4 years ago. She couldn't even remember the name of her chemo drugs. How fabulous is that. She said around the 3 year mark, the whole thing just faded nicely into the background. And she looks happy and healthy.

    Now, that really *is* awesome!

    Thank you for your support, your many emails, comments, your shared opinions and stories and all the good, good vibes.

    Have a fabulous Easter Weekend,

  • Linda W

    That news is good as is your outlook! Onward and upward, better than before was a goal and I think you already proved that one.
    P.S you would never convince me that you could ever ever be an airhead…just saying….
    A sincere thankyou for all your sharing , insights , interesting links and humor, its been very good for me. Hey..I have 5 days off, will check in next week,
    Thanks and have a good week-end to you and family. Big Hug, Linda

  • Jay

    Some choice, eh? How long do you have to decide? I can’t skip any of your posts, no matter how long the list of scary side effects. You’ve got the perfect attitude to ensure you only get the good stuff from these drugs. I love how you keep your sense of humour in the face of all this. I couldn’t help but laugh at your line about a “chubby, depressed, moody, sexually dysfunctional air-head.”

  • Thanks, Jay.

    You are the best audience because your fabulously boisterous laugh is always just micrometres from the surface.

    I hope you'll still be my friend even if my description eventually fits….

  • Jay

    Hee hee. It’s your sharp wit that keeps me laughing. Yup. I’m yours forever.

  • steve

    Hopefully they tell you these horror stories so when it's only 10% as scary you'll be thankful instead of rippin' their ears off.

  • Hopefully.

  • Mark might not like it, but I think you should take out a personal ad: MWCDMSDA-H seeks…. I mean, sure, there'll be side-effects to taking out the ad, but you can just add them to the list!

    And that word “awesome”… I do not think it means what you think it means 🙂

    Oy. Ugh. Makes the lady or the tiger look like child's play, and I sure wish you didn't have to deal with it. But since you do… personal ad!

  • Jana

    Hi Andrea,
    I am writing to tell you that those are actually NOT the only two choices for endocrine therapy (aka hormone therapy) for you (and it was apparently medically inapprriate for a doctor to tell you that those were the only two choices, so you should probably get a consultation with another medical oncologist for a second opinion). There are a few more options and your doctor should inform you about those. For example, that aromatase inhibitor “exemestate” alone (brand name: Aromasin), or one of the other aromatase inhibitors alone — Arimidex alone, or Femara alone. Studies have shown that monotherapy with aromatase inhibitors is superior in efficacy to monotherapy with tamoxifen (translation: an aromatase inhibitor alone is more likely to be effective and work longer than tamoxifen alone.) Or another hormone therapy option: fulvestrant (brand name Faslodex), which is a terrific endocrine drug (effective and safe, only minor side effects if any) but oncologists usually tend to use an aromatase inhibitor first, for years of “adjuvant” treatment to prevent recurrence (“adjuvant” = after your initial surgery & chemo & radiation treatment for your primary stage), and they tend to save (sequence) fulvestrant for later, if/ after the cancer comes back (aka the metastatic stage). But studies have shown fulvestrant to be on par with aromatase inhibitors in terms of efficacy, so you could ask whether that could be another option for you at this time (meaning: even if you are still in your primary stage, meaning: even if you are not a metastatic patient, meaning: even if the cancer has not returned yet). If those are the only two choices that your medical oncologist gave you, then my hunch is that he/she is trying to recruit you for that clinical trial — trying to steer you that way. At first as I read the details of the clinical trial option, I thought that maybe the characteristics of your particular case might be the reason that your doctor said that those are your only two options — but when I looked at your diagnosis page, and when I looked at the first option (5 years of tamoxifen alone) then I realized that if your doctor considers you eligible to take tamoxifen alone or exemestane in combination, then you would ALSO be eligible for an aromatase inhibitor alone (meaning, exemestane alone, or Arimidex alone, or Femara alone.) I am flagging this for you because that way you could get the benefit of the superior efficacy (an aromatase inhibitor, instead of tamoxifen), without the extra side effects of that other questionable drug in the clinical trial — the “Triptorelin.” You look like a young woman, so that sounds like unnecessary overkill, to force full menopause. Tamoxifen alone does not force full menopause, so if your doctor offered you that as one option, then he apparently doesn't think that it is necessary to induce full menopause in your case. An aromatase inhibitor will already suppress the level of estrogen. Again, at first I thought, maybe your doctor thinks that the details of your particular case warrants a double-whammy — but no, that doesn't seem to be the case, because the other option that he offered you (monotherapy with tamoxifen for 5 yrs) is now actually considered the WEAKEST option (weakest in terms of efficacy), inferior in efficacy to monotherapy with aromatase inhibitors. So he basically offered you the weakest option and the double-whammy option — but he did not inform you about the middle option: an aromatase inhibitor alone for 5 years (which has better efficacy than tamoxifen alone, but it would probably cause less side effects/ more tolerable side effects than the combinations in the clinical trial — tamoxifen with Triptorelin, or exemestane with Triptorelin). And as I mentioned, my guess is that he did not tell you because he is hoping to recruit you for that clinical trial. Bear in mind that aromatase inhibitor monotherapy is already a well established option — that is the current “standard of care” for adjuvant treatment of breast cancer, proven by studies to be superior to tamoxifen — it is NOT an iffy experimental option. Which is why I was surprised to read that you were apparently not informed about it. So I recommend that you go for a consultation with another medical oncologist, at a different cancer center, for a second opinion. (Yes, there is time to do that — in the big picture it would be worth it.) Who am I? A journalist whose mother was first diagnosed with breast cancer in 2002. My mom's pathology report was similar to yours (actually worse than yours) — estrogen receptor positive, her2 negative. 3.5 cm tumor, 2 of 2 sentinel nodes positive (one with extra capsular invasion), total of 4 of 16 nodes positive. So she was considered to be at high risk of recurrence. I have since read that research recently showed that the chemo that they gave her back in 2003 is no longer considered effective for her type of case, so apparently what kept her cancer from coming back (until 5 years later) was actually the aromatase inhibitor that she took for years as adjuvant treatment (Arimidex). Trouble was, around the fourth year, she stopped taking it every day. She started skipping doses, and took it only about 3 or 4 days a week. She became complacent/ over-confident — she said she was convinced that her cancer was “gone” — but when she stopped taking the Arimidex properly, then the cancer came back (spread to her liver). Maybe because the cancer eventually developed resistance, or maybe because she started skipping doses of the Arimidex. But the point is, the aromatase inhibitor DID work for her for YEARS — so I highly recommend that you ask your doctor (and/or another medical oncologist) about taking an aromatase inhibitor alone for 5 years, instead of the two options that you named above. I am someone who has done a great deal of reading about breast cancer, and taken my mother to several NCI-designated comprehensive cancer centers (UCLA and City of Hope in California, and the top-rated cancer center in the country, M.D. Anderson Cancer Center at the University of Texas in Houston) — so I am a well informed source. Also, I recently read that research has shown that women who experience the side effect of joint pain while taking aromatase inhibitors (the reason that my Mom started skipping doses) were usually very low in vitamin D — meaning, the researchers believe that it was the vitamin D deficiency that was actually causing the joint pain, and the research found that women who had a vitamin d level above 66 did not have that problem (were far less likely to experience joint pain while on an aromatase inhibitor) — so I highly recommend that you get yourself tested for your baseline vitamin d level, and then start supplementation with at least 2000iu a day of vitamin D3. (A blood test showed that my Mom was in fact deficient in vitamin D, but that test was unfortunately not run until after her cancer came back.) Note that it is important to take the D3 form, NOT the D2 form, which is inferior because it is far less absorbable. Okay, enough. I will close by giving you some encouragement: my Mom actually did really well on Arimidex — she basically resumed her very active life for several years — so know that aromatase inhibitors are not as bad as they may sound. I realize that the list of possible side effects can sound very scary, but the reality is genuinely tolerable/ manageable. And even if you did experience intolerable side effects, then you could switch to another aromatase inhibitor, or tamoxifen. I read that research showed that half of the women who switched from Arimidex to Femara (or visa versa) experienced considerably less side effects after switching. So it's an individual thing, probably based on genetics, as to which one would best agree with your system. And if you get your Vitamin D level up above 66, and take daily fish oil capsules for omega 3, and daily curcumin (for anti-cancer effects and anti-inflammatory pain-relief) then the joint pain would probably not be an issue for you anyhow. (I wish that my Mom had taken vitamin D supplements, and/ or tried switching to another aromatase inhibitor instead of skipping doses of Arimidex, but no one had told us about those remedies back then. Which is why I am telling you now.) An excellent online resource for reputable breast cancer info [ http://www.evidencewatch.com and http://breastcancer.evidencewatch.com/ ]
    The expert in charge of those sites also answers questions from patients on the “No Surrender” patient support forum [ http://www.nosurrenderbreastcancersurvivorforum… ] If for some reason you want to contact me, then feel free to send me an email, but please do not post my email address on your website (please do not make it visible to everyone on the Internet). Cheers!

  • Jana

    Just a footnote, to sum it up in a nutshell: The point is, there IS a Door #3 option (aromatase inhibitor monotherapy for 5 years) that is better than either of the two options that you listed in your post. Better than Door #1 because it has better efficacy compared to tamoxifen monotherapy (meaning your cancer would be less likely to come back), and better than Door #2 because it would probably be safer/ less harsh in terms of side effects/ adverse effects. I see that you are a mother, so preventing recurrence is obviously important, BUT I see that you are also a woman and a wife — so preventing unnecessary “adverse effects”/ stress and strain is also important. “Quality of life” IS important, especially because you will be taking this treatment for many years. Something that I did not mention in my first post is that recent research has reported that tamoxifen is more likely to cause cognitive dysfunction than an aromatase inhibitor, so that's another advantage of aromatase inhibitor monotherapy. Two more things: in terms of side effects, either of the two “NON-steroidal” aromatase inhibitor options, called Arimidex and Femara, might have less side effects than the “steroidal” aromatase inhibitor exemestane. Also, bear in mind that if you chose the clinical trial, you might get randomized to the tamoxifen-alone arm of the trial, which would mean that you would be receiving the weakest protection against recurrence — meaning, you would not be able to get the benefit of the superior efficacy of an aromatase inhibitor. So that's why I recommend that you talk to your doctor, or another medical oncologist, about doing aromatase inhibitor monotherapy for 5 years instead. And whatever you choose, remember that it is very important that you take it every day — don't skip doses. (In other words, don't make the mistake that my mother made. By the way, my Mom is still with us and doing relatively well, 2 years after a scan detected the metastatic tumors in her liver — meaning there are treatments that can help, even if your cancer comes back — BUT of course your life will be easier if the cancer does not come back.) I thought I should write to you because from what I have read, in light of all the research in the last ten years, aromatase inhibitor monotherapy has now replaced tamoxifen as the “standard of care” “first choice” option for adjuvant treatment (for the five years after your initial surgery/chemo/radiation) — that is the consensus of the experts — but from what you wrote, it sounded like you had not been informed of that important fact. Best wishes!

  • Jana

    Oh gosh — I HUGELY apologize — I just came across something that tells me that aromatase inhibitor monotherapy is not an option for PRE-menopausal women. I was so surprised that your doctor had not told you that aromatase inhibitor monotherapy has replaced tamoxifen monotherapy as the “standard of care” for adjuvant treatment, so I did some more reading — and I discovered the reason why your doctor did not tell you that: because that it is the standard of care only for POST-menopausal women, not for pre-menopausal patients. I did not know that because my Mom is POST-menopausal, and when doctors at top cancer centers told us that aromatase inhibitor monotherapy is now the “standard of care,” they did not mention that it only applied to post-menopausal women. I am so SO sorry that I sent those two posts and confused you unnecessarily. I was trying to be helpful but instead I just muddied the waters for you. Mea culpa. You already have enough stress in your life so you don't need confusing information to upset your apple cart any further. I am enormously apologetic. But there were a few things that I wrote that DO still apply to you: make sure that you get your baseline vitamin d level tested and take a vitamin D3 supplement daily, also a daily fish oil supplement for omega 3. And after you make whichever treatment choice, then I suggest that you write to Constantine, the expert who answers patients' questions on that “No Surrender” patient support forum, to ask whether it would be okay for you to take curcumin with that particular adjuvant treatment drug(s). Curcumin has been shown to be safe to take with most drugs (and in fact it has been shown to enhance the anti-cancer effects of many drugs), but I suggest double-checking with Constantine on that site once you know which drug you will be taking. There is a great deal of research that verifies that curcumin has anti-cancer properties, with little or no side effects. The trouble is, most curcumin supplements are poorly absorbed, so they have low “bio-availability” — so they can't be effective, or as effective. There are several formulas that claim to offer better absorption/ bio-availability. One was developed by UCLA scientists. It is called “LongVida” (by Verdure Sciences) — you can find the info on the Internet by doing a google search. After all the reading I have done, that is the one that I have chosen to give my parents. I do APOLOGIZE about not knowing about the pre vs. post-menopausal distinction re aromatase inhibitors, but I do know for certain that I am right about vitamin D for breast cancer patients…. get tested to make sure that you are not deficient (most breast cancer patients are), and take supplements to get your levels up into the normal range. Best wishes!

  • Jana

    I mentioned in my first comment that another endocrine (hormone) therapy drug (called “fulvestrant,” brand name: Faslodex) might be an option for you (even though you are a PRE-menopausal patient in the adjuvant setting), and when I did further reading, I found confirmation of that, so if you are still less than thrilled by the two options that you listed in your blog post above, then I recommend that you ask your medical oncologist about this possibility. We first learned about it for my Mom from MD Anderson Cancer Center (the top-ranked cancer center), and many experts argue that it is an “inappropriately underutilized” drug. (Perhaps because it is a monthly injection, instead of a daily pill.) At first it sounded like it was too good to be true — excellent efficacy, superior safety, superior tolerability (little side effects) — but fulvestrant really did live up to its billing for my Mom. And more to the point, I will copy you on excerpts that say that it has been shown to be effective for PRE-menopausal women, and that it can be prescribed as adjuvant treatment (in other words, not just for metastatic patients). Here is the first excerpt:
    “New Findings on Fulvestrant”
    “Fulvestrant Effective in Premenopausal Women”
    A randomized preoperative study (Young et al., 28th Annual San Antonio Breast Cancer Symposium (SABCS, 2005): Randomized preoperative study of 750mg of fulvestrant and 20mg tamoxifen in premenopausal women with estrogen receptor-positive breast cancer) was reported at the 28th Annual SABCS, in which 750 mg of fulvestrant was compared with 20 mg of tamoxifen in 60 premenopausal women with ER-positive breast cancer, finding that that both ER and PR expression fell significantly further with fulvestrant than with tamoxifen, with all fulvestrant-treated women, both HER2-positive and HER2-negative, achieving a reduction in tumor cell proliferation, establishing that fulvestrant is biologically active in premenopausal women, including those with HER-2-overexpressing disease, a result not been previously reported (see also the KI Pritchard, Medscape (2005): Evolving Role of Hormonal Therapy for Patients With Advanced Breast Cancer). This agrees with John Robertson's findings (Robertson et al., Eur J Cancer (2006): Effects of fulvestrant 250 mg in premenopausal women with oestrogen receptor-positive primary breast cancer) from a Phase II double-blind, randomized, multicenter study comparing the effects of standard dose fulvestrant and placebo 14–21 days prior to surgery of curative intent in premenopausal women with ER+ primary breast cancer where no effects on markers of hormone-sensitivity and proliferation (KI-67) were observed on fulvestrant at this low-dose level.” And from another paragraph on that page: “Fulvestrant may also be explored (off-label / off-protocol) in premenopausal ER-positive patients where aromatase inhibitors cannot be used, or for prevention of breast cancer in high-risk patients. ” That page [ http://faslodex.evidencewatch.com/ ] provides a very helpful summary about fulvestrant, and a thorough round-up of the research regarding fulvestrant, BUT that page says that it was last updated on 11/1/07, more than two years ago, and I know that there has been a lot of research done about fulvestrant since then, so I will also copy you on an excerpt from a new study's abstract, from two months ago (dated Feb 2010) that says that: “…Fulvestrant is the subject of much ongoing research, which utilises knowledge of its novel mechanism and pharmacokinetic profile in order to optimise clinical efficacy and explore new roles, including …in premenopausal women, and use as an adjuvant therapy.” Here is the link for the full abstact: http://www.ncbi.nlm.nih.gov/pubmed/20156170
    So it might be worth asking your medical oncologist about whether fulvestrant could be another option for you now, instead of the two options that you listed above. (And even if you do choose tamoxifen or the clinical trial now instead of fulvestrant, it's good to know that fulvestrant is there as another option for you in case you might need it down the line.) I admire your determination to “survive and thrive,” so I thought I would pass that along. Cheers!

  • Thank you, Jana, for all your research, knowledge and caring.
    Your help further confirms for me that these decisions are extremely important and extremely tricky.

    Wishing good health and happiness for you and your family,

  • Mantolovich

    What a 'choice'. Whatever you end up choosing, hopefully you get all the benefits and none of the nasty side-effects. This totally sucks, but you will get through it!! Hope you're feeling good after your last chemo – congrats! 🙂 xoxo

  • Thank you, Mary. I'm hoping for the same.

  • Angele

    Hi there. I'm 36 and it's been a year since my first chemo round ( out of six last year). An anniversary, I guess. I had breast cancer. Have no breasts anymore, and hair, eyebrows and eyelashes are growing, still. Wanted to tell you that I'm on tamoxifen and I have NO side effects, except probably dry skin. But I always had dry skin and I take a bath or 2 every day (I like hot water). And my hair is still not as thick as it used to be, but I think it'll come. My period came back 6 months after chemo and are fairly normal. I did end up in chemo induced menopause and I was able to stop the crappy side effects by changing what I eat, removing plastic from my life and changing my cosmetic products. I kid you not. If you want to know more. There really is hope. I wrote a bit about what I found out: http://moreoflessblog.blogspot.com2009_08_01_ar

  • Hi Angele,

    Thank you for sharing your experience. And congratulations on you success, resilience and good health.

    I am so happy to learn that your side effects are manageable and that life is good.

    I will definitely check out More Of Less.

    Be happy and continue to thrive,

  • Graced

    I'm with you on the hormone therapy. I've been a non compliant user of Tamoxifen and now Femara (aromatase inhibitor) for the last year. I didn't wait for the full effect of the side effects, I stopped before. I hope you don't mind if I steal your comment, “I guess being a chubby, depressed, moody, sexually dysfunctional, air-head beast being dead……….if I don't get the deadlier side effects, that is. That is exactly how I feel.

  • I have zero useful information to add beyond saying it’s not soooo bad being a “chubby, depressed, moody, sexually dysfunctional air-head”. Of course Gerry may have a different perspective. The unpredictability of the air-head bit is getting a big tiresome.

    On another note, why do they never include “getting really happy and seeing joy and beauty in everything” under the symptom of “moody”? That’s a mood.

    Good luck with your choice.

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