Stage 1, grade 1 and pre-menopausal
hi sisters,
It has struck me that most grade 1, stage 1 sisters seem to be post-menopausal (aka low estrogen) and younger women seem to be more often stage 2/grade 2. I am 42, recently diagnosed ER positive, still full of estrogen and becoming a little paranoid that there is something different about me or my cancer! I am not having chemo as i dont qualify for it. Low oncoDX score etc. On tamoxifen but am a little worried that my long term outcome may be worse because am am in no-mans land!! Are there any sisters out there in similar situation??***************************************************************************************************
May 2012 Decided to update this post as your responses have shown me that there are many of us who started out premenopausal with stage 1 grade 1 disease! What has become evident is that the choices for treatment can be tricky for us. Dilemmas include whether or not to use ovarian suppression or ooph (the definitive study - the SOFT trial will start to publish results hopefully around winter 2013), whether to do chemox if oncotype is intermediate (there is a study looking at this -The TAILORx but results are years off, whether adding zometa to treatment helps reduce recurrence (data remain somewhat conflicting although there appears to be a benefit for women over 40 years provided they are also treated with ovarian suppression), whether ovarian suppression alone or in combination with AI is a good alternative to tamoxifen for those of us who can't take/tolerate tamoxifen (TEXT trial results anticipated with SOFT results) and does Cyp2d6 status matter?
So if you are stage 1, grade 1 and diagnosed when you were pre-menopausal you are definitely not alone. There is not a "one size fits all" answer to how we should be treated but hearing the treatment routes others have chosen does help with decision making... and optimism, there are 20 year survivors posting here!
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Comments
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I too, am pre-menopausal. I am 48 yrs old, stage 1, grade 2. Also ER & PR positive, HER- and no node involvement. I am thinking this is a good prognosis, well, as good as it can get having BC. Taking tamox, which will hopefully due its job. What is your concern? Why are you feeling you are in no-mans land?
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Me too, pre-menopausal, Stage 1, grade 1. 46 years old. I don't get my treatment plan until Thursday but I'm being told tamox. Will find out my onco score then too.
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Thanks for replies,
My concern is that my cancer is highly estrogen dependent and I have lots of estrogen! Most premenopausal women with estrogen dependent BC have historically received chemo but with recent data we are now not always offered chemo. I don't think there is a large cohort of us with premenopauseal early stage not receiving chemo- probably hence only 2 replies so far! That makes us very dependent on tamoxifen for our outcome. Sure our stats for long term survival are good but late recurrence is a reality. So if the tamoxifen fails us we are in trouble. That's why the cyp 2d6 is receiving so much interest at the mo. Also tamoxifen actually results in a 3 fold increase in estrogen levels so if it does not work properly it could potentially feed our Micro deposits! There is a study called the SOFT trial underway looking at adding zoladex to tamoxifen for premenopausal early stage BC but I think the results will not be available for a few years. I have young kids and don't want to take any risks. I am likely to be a fairly long way from natural menopause and see estrogen as my enemy so I am going for zoladex to induce chemical menopause. I am a medic- an endocrinologist and, although this is not yet an established treatment, I will do all I can to see my kids grow up and it feels the right route for me.
I welcome your thoughts on this,
Annice0 -
Hi - I'm 45, IDC in one breast, DCIS in the other. ER/PR positive. HER2/neu negative. stage 1, grade 1. Oncotype score of 12. I did do 4 rounds of chemo as my doc thought it did improve my odds enough to outweigh the risks. I have a 7 year old and while it was a tough decision, I was willing to try. I finish this Thursday then on to Tamoxifen. Some days I'm still pretty scared despite a good prognosis statistically.
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Wow it's surprising how our oncs and BSs recommend quite widely different treatments! I guess that's a factor of a degree of uncertainty they still have. Well done for getting through chemo bcisnofun!
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Annicemd - What exactly does the chemically enduced menopause accomplish? Just to elimnate the ovaries producing estrogen? Doesn't going into early menopause cause other complications? Just asking as I really don't know what that means and if it's really medically ok to do.
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Yes that's right baseballmom, chemical menopause or ovarian suppression stops the ovaries producing estrogen which is our major source of estrogen although small amounts are produced elsewhere - hence AI s for post menopausal women. There are side effects; menopausal symptoms for a start - hot flashes etc (but I figure I will go throughout that at some point anyway if I survive!) there is also a risk of osteoporosis which is thinning of the bones. I am going to have a treatment called zometa which protects the bones and also has anti tumour properties and may also reduce risk of recurrence although evidence is not established for that (see the Gnant Austrian early breast cancer study which showed benefit and the Azure study which did not).
Good luck with treatment plan.0 -
I think there are plenty of stage 1 grade 1 premenopausal women out there. One of my tumors was grade 1 stage 1 on the other side I had grade 1 stage 2. My oncoDx was 4. I was offerred chemo but declined because I didn't feel chemo gave me enough benefit. I think that since I'm 52 I'd have to be classified as perimenopausal even though I have regular periods. I'm planning on asking to be put into menopause chemically.
Also, there seems to be a lot of support & camraderie among those getting chemo. I believe they reallly need this. Less so for those of us who don't have chemo. Yes those thoughts will always be with us regarding the cancer's potential to return someday. Glad you started this thread & hope others chime in soon.
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I am also Stage 1a, grade 1, ER+/PR+, HER2-. Oncotype 6. No family history. Chemo was not suggested. I will begin radiation end of Sept and Tamoxifen. I am 53, premenopausal. My periods were very regualr until about 2-3 months ago. Don't know if this is the natural course or stress induced. Those in Stage I have very good odds. I am thankful this was caught early. On annual mammo.
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I'm stage 1, grade 2, onco 15, and premenopausal (age 44) and HIGHLY ER+ . Chemo was not recommended for me. Onc said my "weapon of choice" would be Tamoxifen. He said he would say the same for his wife or daughters.
I'm not sure what I will do after my 5 years of Tamoxifen. I don't think I'm anywhere close to menopause...my periods come every 30 days like clockwork...even through BC, surgeries, etc.
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I too am stage 1, grade 1, age 43. Haven't had my lumpectomy yet so I don't know the final pathology or node involvement status. I'm ER/PR+ and Her2-. I have a form of IDC called "tubular carcinoma" which is apparently very rare (but a good kind of rare since it is non-aggressive). I've been told by countless docs that I am incredibly lucky to be stage 1, grade 1 at my age. But then I look at all the women in their 40s that i see on these boards who have DCIS and I wonder if they too would be stage 1, grade 1 in a couple years if they hadn't caught the DCIS.
I'm slated for rads and tamoxifen after my lumpectomy and yes you're right, we are putting a lot of faith in one drug to protect us. My mom had early menopause so I am hoping I will as well.
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hi another stage 1a grade 1 ILC, onco score of 1 and a tamoxefen and farosten failure.- At 50, perimeopausal - er + / pr+. her-
I am taking Metformin through a gp- its going okay. and thinking about having my ovaries out, but not sure.
I also use Inderol carbinate to reduce the estrogen in my body (broccoli/cauliflower)., don't eat red meat, .... exercise and watch my sugar....
Always looking for better ideas.
thanks for the thread,
Chocolate rocks
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Thanks for replies, I guess I am not as alone as I feel. V good, pertinent comment about the difference in support for us sisters not receiving chemo. Chemo is a truly horrible poison and it's great our chemo sisters get support but I feel like I have been dumped since surgery. I was discharged by my onc on tamoxifen at 42 with multifocal BC ad that does not seem right to me. Since my surgery I have received more support from this website than I have from my cancer team! For that I am truly grateful to you all xxxxxxx
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I admit I am troubled by the doctors not recommending chemo for women younger than 45. My onc was pretty clear that women under 45 with a one cm. tumor or larger should have chemo, regardless of lymph node involvement or ER status. I was treated almost 8 years ago so maybe things have changed. I don't know.
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I'm also stage 1, grade 1 and was pre-menopausal when diagnosed. My oncologist told me, "You have an old woman's cancer in a young woman's body", which is a good thing. After a year on Tamoxifen, my periods have stopped (none for 3 months) and I am sincerely hoping they stay gone. I am surprised that your oncologist does not continue to follow you. My oncologist has made it clear that he is my doctor for life. Although our cancer is much less aggressive than some, we have a risk of late recurrences, for which we need to be monitored.
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I'm stage 1, grade 2, onco 14 and was premenopausal (age 53) and HIGHLY ER+ . Chemo was not recommended for me. My local oncologist wanted to throw the kitchen sink and the breast oncologist from UCSF (Breast Center) recommended Tamoxifen for 5 years followed by an AI for 5 years. I decided on the Tamoxifen for 5 followed by the AI for 5 years. My local oncologist did not like how high my esterdiol level was so she decided to give me lupron shots monthly. This shot me into menopause with major hot flashes but now my esterdiol level is extremely low. The lupron turns off the ovaries (they dont make the estrogen). Since I am only doing the tamoxifen I was happy to get the lupron shot to reduce something (estrogen) that feeds my cancer (I am highly ER+). Is there research to show this works, do not know, but since it doesnt hurt and it seems logical to reduce estrogen levels in someone that is highly ER+ I will do it. I plan on eventually having the ovaries removed but want some time away from a surgical table.
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Lupron or zoladex have historically been used in women unable to take tamoxifen and seem to work equally well to tamoxifen and also seems to work equally well to chemotherapy for premenopausal stage 1- BC. However what is not known is whether you get premium benefit from using tamoxifen plus the ovarian suppression with these drugs. That is what the SOFT trial will look at. Until the results are available I would prefer to hedge my bets and take the zoladex to suppress my estrogen. The thing that is frustrating is that there appears to be no consensus of opinion amongst our oncologists.
So sisters, challenge your oncologists about ovarian (estrogen) suppression if you are premenopausal! I now have a new (better!) oncologist who will follow me up long term. He feels that the zoladex (same as Lupron) and zometa, with the tamoxifen are my best option.0 -
Baseballmom good luck with your treatment plan tomorrow!
Annice0 -
This thread was started just in time. I did read what was out there for the SOFT study and I do recall my MO mentioning early on about maybe doing the suppression. So now that the newness of BC is over I can better discuss my options with her.
Thanks Annice!
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Ok, had a good discussion with my MO and I've decided Tamoxifen only and then she wants to do an AI after that. I've been peri-menopausal for a few years, lots of symptoms, so chances of me going into menopause during tamox treatment is high. My Onco score was low, 13 and I am BRCA-.
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That all sounds great baseballmom. And fantastic to have a low onc score. I think knowledge is power and knowing the pros and cons of all options helps us make an informed decision about our treatment. I wish I was perimenopausal! I never thought I would say that!
Annice0 -
FWIW, my doc said that my cancer is more common for older women, too.
My MO disrecommended chemo for grade 1; the slow-growing cells are most like normal cells and don't "benefit" as much from chemo (harder to kill 'em when they are slow growing). Like someone else mentioned, tamoxifen is considered the weapon of choice for me. I'm 46, pre-meno and 90% ER+. (FWIW, another study I read said that chemo tends to benefit women under 50 more, but that did not list the grade.)
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I have stage one, grade one, I am pre menopausal, I opted out of tamoxifen at this point, I had a lumpectomy and targeted radiation. I also had tubular which I was told was very rare and an old person's cancer which was good because it is less aggressive. After a review with my med onc, tamoxifen would have reduced my chances of recurrence by less than 4 % but raised many other concerns. I was BRACA Negative even though my mom had breast cancer and my tumor was too small for onco typing (2 mm). I am normally a healthy eater, maintain a good weight and exercise regularly. I am now trying to switch to organic, and para-ban free products. Once we have breast cancer, I read our rate of another breast cancer is 4-5 X higher even though my rate of return for the existing one is fairly low. Tamoxifen is like a pill type chemo, I would rather not take it unless it greatly improved my odds. I am definitely torn. I also consider going back and having a mastectomy but I have read that people who have lumpectomy's live longer than those with mastectomies. Maybe because their cancers are less aggressive or found earlier? There is so much info, it's hard to know the right thing to do. I am 8 months out.
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Hi CRR, I understand your reservations about tamoxifen, especially as you seem to have a very low risk cancer. Had you thought about inducing menopause with Lupron/zoladex?? Sounds like your long term odds will be v good anyway.
I too have healthy lifestyle and don't seem to have any risk factors that caused this so it makes you wonder how to change your lifestyle for the better!
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CRR, I hear you. For me, the decision about tamoxifen was a tough one. If my "benefit" was only 4%, I'd probably choose your path too. (In my case, my "benefit" was ~9%. Also, I read the studies that show that 5 yrs of tamox can reduce the risk of recurrence even in the 10-15 yr range). It's a tough decision for everyone.
Re: mortality on lumpectomy v. mastectomy: I think you're right that it may be that, generally speaking, the patients who choose mastectomies today have more aggressive tumors or other higher risk factors. (FWIW, I know someone who was diagnosed 31 years ago and did a MX--that's all they offered--and she never had a problem again). Of course, my husband will point out that any surgery has risks. Given a choice, he'd try any/all options before doing an elective surgery. That was my BS's attitude too--try tamox. If you don't like it, you can always quit. (not a lot of do-overs with surgery). Overall, your prognosis sounds excellent, even if you stop right now. Best of luck.
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Actually ,for early-stage breast cancer, studies show that women who have breast-conserving surgery followed by radiation treatments have the same survival rates as women who have mastectomy.
As much as I hate the idea of tamoxifen, I hate the idea of recurrance worse.
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Yep inclined to agree with others about tamoxifen and I have read the literature widely. The risk to the endometrium is real but small. The risks were more apparent when 40mg doses were used in the past and the dose is clearly half that now. In terms of symptoms anecdotally I have experienced none and it must be remembered that tamoxifen also lowers cholesterol and appears to have a favorable vascular risk profile and protects the bones! Those effects are rarely mentioned!
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im 47 found my 9mm tumor myself inbetween mammagrams. first called gyno for ultrasound, biopsied by radiologist, sent to surgeon for lumpectomy, met with onc next to tell me stage 1grade1, 0 nodes, er+......now for the fun part...i have had a boob job since i was 27, exchanged them out 3 years ago and went larger, 34G....thats 34dddd, because i had implants already, radiation was out of the picture for me...so if i had a mastectomy, then all i would need is tamoxifen. there would no was that i was going to ruin the perfect boob job with one breast taken and try to reconstruct the other one to look similar. plus not to mention waiting every year to see if there are new tumors in the other breast, so after looking at hundreds of before and after pics of the diep procedure i was sold, so i got a breast reduction, matching i might add, and a tummy tuck i didnt really think i needed but once i heal and i can run distance again, i may actually see my six pack abs that were hiding under my ten extra pounds you put on after you get married, especially to a cajun. i feel very lucky to be a stage 1 grade 1.......size c cup newbies, with by far the best clevage i have ever had, and a crazy flat stomach......i dont wear a swimsuit anymore because ive had skin cancer, i have the greatest body ive ever had and i turn 50 next year. crazy, when you first find out you have cancer and you know nothing about the disease you think your going to die the following week. i have 2 close friends who have already been through the experience, i found this website and tell everyone i know how this site has given me more knowledge than a 5minute meeting with the doctors.......this whole experience has taught me, or at least reminded me its quality time not quantity. when my father died from cancer his response to the onc was, "well, NBA was on strike", might as well. the best thing my general surgeon said to me was, "its your decision". is it a crap shoot, is it perfect science, is it destiny, can i educate. myself to perhaps come up with the perfect formula for me. bottom line is every day i have ti remember how lucky that i live in america and as a middle class woman with a good job and good insurance, if any of this buys me extra quality time on the planet, ya me.
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I was diagnosed at 45, stage 1 and grade 1, onco. score 9. Did radiation, lumpectomy and no chemo. Refused Tamoxifen although it was recommended as tumor was very ER/PR positive. Age 49 I got a "new primary" in same breast. Started Tamoxifen day of diagnosis! I don't think this is so unusual.
Best to all~
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I refused tamoxifen as prevention 3 years before I was diagnosed. I actually started it for 3 weeks and then stopped and decided it wasn't worth it. I do not regret my decision but I do wonder sometimes what if?
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