premenopausal- tamoxifen only or ovarian suppression + AI?
Hi ladies. Hoping to get some input here on the decision I'll be making shortly.
I was diagnosed in June, Stage 1A, strongly ER+ (98%) and PR+ (83%) and HER2-. Even though I was grade 1 and node negative, my Oncotype was 20, and between that and my young age (31 at dx) my MO recommended chemo. I just finished the 4x Taxotere and Cytoxan chemo, about to start rads.
MO said she did NOT recommend me doing ovarian suppression in addition to tamoxifen because she says they're only for women with "later stage" cancers, Stage 2B or later. The second opinion oncologist I consulted with at MD Anderson said the same thing and also did not recommend it, because ovarian suppression is supposedly extremely hard on very young women's bodies and comes with a host of unpleasant side effects.
But all of what I've read from the SOFT trial results said young women, especially under 35, particularly benefit from OS, particularly OS + AI, especially if they've had chemo. I couldn't find anything about staging having anything to do with it, and I read through the entire study.
I know I shouldn't second guess my doctors, but I really don't want this to come back. At the same time I don't want to have horrible side effects like bone loss and heart problems down the road either. I'm also concerned because I am about to get married and I'm afraid of turning into an ogre on OS!
What has been your experience if you're doing the OS + AI? Did anyone else have to make this choice?
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My oncologist said the decision could go either way but she was leaning toward the ovarian suppression and AI. She said it is just showing to have better results in be recent studies. My cancer was 100% ER and 100% PR. My mom laughed because I never do anything halfway. I am already on a shot for ovarian suppression to protect my ovaries during chemo and I don't think it's been bad at all. Although we froze eggs before hand this was a second level of protection.
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When I quit Tamoxifen due to horrible SEs my MO said I could try ovarian suppression + an AI but that he suspected I'd have really bad SEs with ovarian suppression as well. Have you tried Tamoxifen to see how it works for you? Personally, if I were you I would go with Tamoxifen.
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so I am actually doing OS with lupron injections and tamoxifen. MO was concerned about bone density loss on and AI, hence the tamoxifen, but felt OS, at least for the first two years, was important.
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No, I haven't tried tamoxifen yet, I have to wait until after rads. But I like to plan ahead.
I suppose I could always just try tamoxifen at least to get through my wedding and honeymoon, and attempt OS later. What have been your OS symptoms
I just find it odd that two MOs would tell me to not do something that recently has been heralded as "practice changing."
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I think many MO'S try to weigh the benefits vs the risks arimidex has bone loss,heart, and cholesterol issues. I think the SOFT/TEXT srudy has an appendix showing the absolute benefits comparing the tamoxifen vs arimidex with ovarian suppression vs tamoxifen and ovarian Suppression. Tey break it down by age and by diagnosis.
Did you go into menopause during chemo? I personally would like to take tamoxifen. It's safer for bones and such. In my case my doctors think ovarian suppression and AI are worth the SE. I HAVE
Also unfortunately many MO'S do not treat enough young patients. That makes it hard for us to know. I am not sure if the part of the study with tamoxifen alone has come out yet.i amninterested to see how.much of a difference ovarian suppression makes.
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Tha'ts interesting about the appendix, exercise guru. I might ask my MO if she can show me the part that says "Stage 2B" and I might feel better about it... Why did your MO think you needed to do OS? It looks like you were also node negative and got TC. Plus, you are older than me, which for this is a good thing.
I have no idea if I'm in menopause from chemo. I just finished 2 weeks ago, and I had 4 rounds. I got my period after the first 3, but not after the 4th (yet). My MO says I almost definitely will get it back, and soon.
Maybe I should get one more opinion, although I'd really hoped the MD Anderson opinion would solve the issue in my mind...
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there is a test to see if a person responds well to tamoxifen on not. Even if it is experimental I would push for that. If they put up a fuss point out how young you are. I will try to find the link to the appendix when I get to my desktop
In the srudy for women under 35 there was a good outcome with arimidex I am not sure how much better it was from tamoxifen.
My situation I'd because I had the Palb2 gene.
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Hi:
In the past, some have had genotyping (a genetic test, not a simple blood test) to assess CYP2D6 function. I am aware of at least one person treated at MD Anderson who has been tested in some manner. I do not know if it is still being offered there or not (in connection with some study). If testing were still available, the available studies appear to be limited and conflicting, so it is unclear how valuable such information would be for decision-making purposes. If interested, please consult your Medical Oncologist for current and professional advice.
More generally, per this perspective (see link below), certain genetic changes in the CYP2D6 gene may cause a person to be a poor metabolizer of tamoxifen, which in turn, may decrease the effectiveness of tamoxifen.
http://jnci.oxfordjournals.org/content/107/2/dju43...
Regarding the estimated frequency of such genetic changes:
"Loss of functional genetic polymorphisms in CYP2D6 lead to the absence of functional CYP2D6 protein in approximately 5% to 10% of whites (people of European ancestry) and 1% to 2% of those of Asian and African ancestry. In the literature, these are commonly referred to as CYP2D6–poor metabolizers (PMs)."
The article discusses the history and some of the challenges of such testing, including the question of what is the appropriate sample source for ensuring that test results are a true reflection of germ-line genotype and what is going on in the liver (where CYP2D6 metabolism is occurring). It also discusses questions arising from these challenges regarding the results of past studies that may have used other methods.
It further notes:
"Genotyping this gene is difficult in normal settings, because it has a large number of single-nucleotide polymorphisms, gene deletions, duplications, and multiplications, along with adjacent pseudogenes, all of which make determination of the CYP2D6 genotype–determined phenotype the most complicated in pharmacogenetics."
The Goetz study referenced is behind a paywall, but there is a patient access option for those who wish to dive deeper.
The National Comprehensive Cancer Network (NCCN) guidelines (Version 1_2016) state (emphasis added by me):
"Given the limited and conflicting evidence at this time, the NCCN Breast Cancer Panel does not recommend CYP2D6 testing as a tool to determine the optimal adjuvant endocrine strategy. This recommendation is consistent with the ASCO Guidelines."
BarredOwl
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This is such a hard decision. If you were at risk enough to have chemo, wouldn't you be at risk enough for OS? Isn't that what the SOFT trial concluded? It is true that there are side effects and quality of life to consider; one thing to remember is that you can stop OS at any time. What do your doctors say about your personal risk for bone or heart issues, based on your own medical history and family history? Also, I wonder whether you should ask about a compromise such as doing two years of OS, then switching to just tamoxifen.
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I really think we should get an estrogen level test before deciding anything about AIs and I can't understand why they don't do that?
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Shetland Pony, That's what I was confused about too. But two MD Anderson trained MOs seem to disagree. Maybe because I got TC chemo, not AC-T, and was node-negative, with a low-intermediate Oncotype? I do in fact have an extensive family history of heart disease and stroke- not really cancer though, ironically. I've also had freakishly high cholesterol since my early 20s.
BarredOwl, I had heard about that genetic test and considered asking about it. But I talked to a girl my age in my local support group who is now Stage 4 and had my MO for her first diagnosis. She was very upset because our MO had refused to give her the test when she'd requested it after her first dx, and then she had mets 22 months later. After the second dx she got her own genetic test which showed she was a poor metabolizer of tamoxifen, and blamed our MO for her mets.
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Hi Tshire:
It is hard to know what to do. The NCCN recommendation is population-based. Perhaps inquire about the test and ask, hypothetically, if a mutation indicative of a poor metabolizer was found, would it would change the recommendation in your individual case based on the best current clinical evidence.
BarredOwl
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Here is the appendix. Scroll to the bottom for the data. From what I understand is younger women who had Chemo tended to benefit the most. Women with small tumors who were node negative tended to do well either way. Unfortunately this data only compares the ovarian suppression _ Tamaxofen with the ovarian suppression Arimidex. They are still waiting for the results of the Tamoxifen only arm. To be honest when I look in the numbers I wish they would have done a Ovarian suppression only group. Personally while there is some benefit in the statistics it still is a huge amount of sacrifice for a young person to go on OS and Take AI. Also the study while large has only been going for 5 years. Its hard for those of us trying to make decisions now with data that is such a short time span.
Supplementary file for TEXT/SOFT
BarredOWl you are awesome! thank you for posting information on CYP2D6 I have always wanted to know about it and it is good information for me.
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Hi:
For completeness, the SOFT study (Francis et al). also has a supplementary appendix here:
http://www.nejm.org/doi/suppl/10.1056/NEJMoa141237...
This is more information than my brain can process.
BarredOwl
P.S., For those who'd like links to the articles:
Francis et al., SOFT: http://www.nejm.org/doi/full/10.1056/NEJMoa1412379...
"results of the planned primary analysis in SOFT comparing adjuvant tamoxifen plus ovarian suppression with tamoxifen alone after a median follow-up of 67 months"
Pagani et al., SOFT/TEXT: http://www.nejm.org/doi/full/10.1056/NEJMoa1404037...
"primary combined analysis of data from TEXT and SOFT comparing adjuvant exemestane plus ovarian suppression with adjuvant tamoxifen plus ovarian suppression after a median follow-up of 68 months"
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I have not found the OS side effects to be too bad. The shot is every three months. No periods which I love. You do need a lubricant when having sex...it does cause vaginal atrophy...but my husband and I are adjusting to our new normal there. But I have had very few hot flashes, no night sweats. I wake up at 4am now cause I find I need less sleep.
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I believe we do have SOFT trial results for the tamoxifen-only arm:
"Adding ovarian suppression to tamoxifen did not provide a significant benefit in the overall study population. However, for women who were at sufficient risk for recurrence to warrant adjuvant chemotherapy and who remained premenopausal, the addition of ovarian suppression improved disease outcomes. Further improvement was seen with the use of exemestane plus ovarian suppression."
http://www.nejm.org/doi/full/10.1056/NEJMoa1412379
I agree that five years is a short a time when we are talking about hormone-receptor positive bc. And many ILC patients are hoping they will analyze the ILC cases separately at some point.
(Apparently I cross-posted with BarredOwl.)
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it's hard, because overall I had pretty low risk tumor characteristics. My onc said if it wasn't for my age, she wouldn't have recommended chemo.
My age was about the only thing that was considered high risk -
Hi again:
Just saw this article in Medical News Today regarding two abstracts at SABCS 2015 regarding CYP2D6 genotyping. Interestingly, the investigators believe other factors besides genotyping challenges explain conflicting study results.
http://www.medicalnewstoday.com/articles/303942.ph...
These investigators' take-home message:
"At this point we still have a hypothetical association between genotype and efficacy that has not been validated. For now, there is no clinical benefit to using CYP2D6 to inform tamoxifen treatment decisions. We need to validate these hypotheses."
Links to the two abstracts can be found in the References section near the bottom.
This is for information only, and as always, please confirm with your doctors.
BarredOwl
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Thank you for posting the Tamoxifen only arm. Do either of you know if they have ever compared Tamoxifen to Ovarian suppression. I wonder if an oophrectomy provides prevention protection without AI or Tamoxifen but I have never found a study.
tshire I noticed you are stage 1A and Grade 1 that seems like a very good prognosis. The challenge is that young women ( those who have chemotherapy) remain premenopausal or regain premenopausal status. Still going through menopause at a young age is tough and has long term side effects. I have been reading about this getting ready for my surgery. I still do not know what is the best choice. Certainly it is a hard decision either way. I believe ovarian suppression is reversible. So maybe it depends on if you plan to still have children? Also the good part about Lupron OS vs oophrectomy is you can quit if the menopausal side effects are to severe.
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Hi Guru:
The only thing I can find is this older 2009 review article which mentions limited studies as of that date.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC390199...
"Ovarian suppression (OS) refers to the use of temporary means to suppress ovarian function, generally with LHRH analogues, whereas ovarian ablationa (OA) refers to permanent strategies using either oophorectomy or ovarian radiation. . . .
. . . A key question is the relative efficacy of tamoxifen vs OS/OA and this has been very poorly studied.
A meta-analysis of four randomized trials of combined endocrine therapy with ovarian suppression plus tamoxifen as compared to LHRH agonist alone for 506 women with advanced breast cancer has been reported.(48) A significant benefit was seen favoring the combined treatment in PFS (HR 0.70, P = 0.0003) and overall survival (HR 0.78, P = 0.02). [insert return]
The efficacy of tamoxifen alone compared to buserelin alone and to the combination of the two was evaluated in a single trial.(49) The median overall survival with combined treatment was 9.7 months compared to 6.3 months for buserelin alone and 5.6 months for tamoxifen alone (P = 0.03). The difference in overall survival significantly favored the combined arm and the two single agent arms were not significantly different from each other.
Finally a Norwegian study examined two years of adjuvant goserelin compared to tamoxifen in 320 premenopausal, node-positive women in the adjuvant setting. The majority of the women received adjuvant chemotherapy with vincristine, cyclophosphamide, 5-fluorouracil, and methotrexate also. There was no significant difference between goserelin and tamoxifen for either recurrence or survival, but the study was small and the confidence intervals were wide.(50)"
BarredOwl
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Tiffany, I thought of something else to ask your oncs. Your tumor was ER+ PR+ Her2- with high Ki67. This makes it luminal B, right? Riskier than luminal A. What bearing does that have on your choice of hormone therapy, and how does the fact that you did have chemo figure in? My oncologist said that biology trumps stage.
(I believe another kind of luminal B is ER+, PR-, and I think I read that PR negative might be a marker of tamoxifen resistance. Does this mean that other luminal B types would also possibly be tamoxifen resistant? I do not know.)
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We can divide all Luminal B (HER-2 negative) cancer into a few subtyes: PR high and Ki67 high, PR low or absent and Ki67 low, PR low and Ki67 high. Aromatase inhibitors are more effective than tamoxifen when Ki67 is greater than 20%, PR low or absent or HER-2 overexpression. Chemo is the most effective when PR low or absent and Ki67 high.
http://www.sciencedirect.com/science/article/pii/S...
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Yes, but unfortunately these studies are simply comparing AI to tamox in postmenopausal women. I think we all know that an AI is always better than tamox in that situation. I'm tricky because I am pre-menopausal.
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I was told OS+AI would give me a 2-3% survival advantage over Tamoxifen alone. No thank you. I am doing Tamoxifen alone. Been on it seven months now. There's no way in heck I would be able to tolerate full blown menopause. I was stage 2A, no nodes.
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Tshire, have you talked to your MO about this again? I have some of the same questions, and I'm curious if they were able to point you to something that said that AI+OS is only for stages IIB and III. I haven't seen anything like that in any article I've read, although I've yet to plow through the SOFT study results (something that is on my list for this week). Let us know what you find out.
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No, not yet. I'm doing radiation now, and I'll ask after that.
However, looking at your stats, being >40 and no chemo is a great indicator that you don't need OS+AI. SOFT results back this up.
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Hi!
I'm doing OS (Zoladex) + AI (Aromasin). I'm relatively "young" in the BC world (diagnosed at 46 and premenopausal), but I was diagnosed at Stage IIIA. So far, ovarian suppression has not been too bad on my middle-aged body -- just hot flashes and some bone thinning (taking calcium and Vitamin D for that). I'll be on AI for 10 years -- fun times.
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elainetherese, I'm following your progress with OS and AI... especially with the Aromasin. I'm "young" too in the BC world, (47) We're both triple + although you had IDC and I have ILC... my doc is looking at Tamoxifen for a year or less, to see if my periods come back, if not, then Aromasin. If they do, she's talking ovary removal, but my hubby's bff is a gyne onc and he says, keep your ovaries if you can and do OS with AI... I get anxiety about side effects... chemo was horrible for me and I worry that the SEs from Tamoxifen will be bad... I guess we'll see once I'm done rads.
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