Chemotherapy: 3 Medical Oncologists: 3 Different Opinions
I can't decide if I should have chemotherapy or not. Here are my stats:
46 years old, premenopausal
IDC 1.4 cm, ER+ 96%, PR+ 94%, HER2-, Grade 1, Stage 2A, 1/4 nodes SNB, KI67 6%
I went to three different medical oncologists and got three different answers.
MedOnc #1: Yes chemo: AC-T or TC - leaned to AC-T because of pre-existing neuropathy since we could omit the "T"
MedOnc #2: Originally Yes chemo: TAC or TC, then suggested CMF or CAF because of pre-existing neuropathy. Later said if I choose not to do chemo, it would be a reasonable option.
MedOnc #3: Said NO chemo is necessary. Then he later said he could be convinced for either CMF or no chemo. Then again changed his mind and said he would probably go with CMF. (He also briefly mentioned the possibility of Zoladex and Tamoxifen instead of CMF and Tamoxifen.)
This is absolutely nuts!
From what I understand from my research, I think I am Luminal A. My type of cancer probably has little to no benefit from chemo since it is highly ER and PR positive and Grade 1. The NCCN guidelines for Stage 2 with one positive lymph node recommend chemotherapy. However, they don't break down Stage 2 into molecular tumor biology (Luminal A, Luminal B, Triple Negative, etc.)
The first medical oncologist strongly felt I should take the most aggressive chemo available because I am young and pre-menopausal. The third medical oncologist felt that dose dense AC-T was like dropping "an atom bomb on an ant hill." He originally thought no chemo was necessary, but later suggested CMF, but said the only benefit I could obtain would be from ovarian ablation -- and he didn't know how much benefit that would be - "Maybe .5%," which is half of one percent. (He changed his mind about chemo because I have one positive lymph node and that this was "discordant" with Grade 1.)
I also have an Oncotype DX score of 12. However, since I am pre-menopausal and have one positive lymph node, the oncologists aren't sure how much to weigh my score. (A score of 12 suggest zero benefit from chemo.)
What would you do if you were me taking everything into account? (Age, pre-menopausal status, 1 positive lymph node, luminal a (highly ER/PR+, low grade)? Should I go for the aggressive chemo? Or something like CMF? Or Zoladex plus Tamoxifen? Or just Tamoxifen?
I have to make a decision very soon and my head is spinning.
Thanks so much!
Comments
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Hi Fastwalker and welcome to Breastcancer.org!
We're sure you'll find this amazing Community an incredible resource for support, advice, and knowledge while you're making treatment decisions.
We're sure others will be weighing in shortly with their opinions. We just wanted to stop in and say hi and welcome!
Please let us know what you decide! If you decide to go for the chemo, you may be interested in joining others who are also going through chremo treatment along with you on the Starting Chemo May 2015 thread, or starting your own thread, depending on the month you begin treatment.
We hope you gain some insight soon. Looking forward to hearing about your decision and experience. We wish you the best!
--The Mods
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Fast Walker, I so sympathize. I too was highly ER/PR positive, HER2-, stage 2a. 0/1 nodes, but 3.6cm heterogenous grade1/2. I'm 48 and premenopausal. KI67 5%. Prior to oncotype results my breast surgeon, Dr. Laura Esserman at UCSF said all tumor markers pointed to no chemo. Oncotype came back 24. Sooo, much debate about value of chemo. My case was presented to the tumor board and sent out to 3 other research institute oncologists. Only 1 came back with being ok with no chemo if that was what I really wanted. All the rest said chemo. Decisions hinged on my "young" age and tumor size. Your tumor is smaller, but you have one node, making us both stage 2a. Unfortunately, my tumor was heterogeneous which means part was grade 1 and part was grade 2. The thought was the sample that the Ki 67 was done on was grade 1, hence the low score and the oncotype sample was grade 2. Seems like with a low oncotype and grade 1, you could reasonably skip chemo, which was the way I was leaning until I heard back from the consulting oncologists. The 1 node would concern me. Being in the gray area sucks! I started TC x 4 on May 7th and am cold capping. So far the side effects have been minimal and way less challenging than my DIEP flap recovery and subsequent complications requiring a second surgery 4 weeks post MX. As much as I wanted the treatment phase to be over, I'm glad I'm doing the chemo now, especially when I read stories on this board of those with recurrence. No way to know whether chemo will prevent a recurrence for me, but feeling good that I left no stone unturned. I am premenopausal, but have been doing monthly Zolodex injections since diagnosis in December and therefore will go on an AI instead of tamoxifen.
I understand your frustration with the oncologists. We expect them to tell us what to do, but in your situation, it is really your call, which is probably the last thing you want to hear!! Once I made the decision for chemo, my anxiety went way down and I felt good about the choice. I hope this helps, not sure if it does! I'm on TC because family history of heart disease and heart failure. No AC+T option for me.
Good luck and hang in there.
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How much cancer was in the lymph node? But otherwise I would lean on the fact that Oncotype was low, Ki was low, and grade is 1. I'd go aggressive with hormone therapy, there is even a clinical trial for hormone therapy before surgery - that would have been ideal for your situation since you could have assessed the efficacy of an antihormonal. But Zoladex and AI should work better than Zoladex and Tamoxifen. Hard decision, but good luck.
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Gosh... 3 different opinions!!! That is def a tough one. I just wanted to chime in and say that I think it's the positive lymph node that is throwing you into this crazy category. I think with a positive lymph node all oncotype scores and everything else is not taken into consideration. I think they just always throw chemo at lymph positive because that means that those pesky cancer cells escaped. Is there a MO out of those 3 that you trust the most? Maybe go with his recommendation! Best of luck with your decision!
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Leighrh - you have to understand that Oncotype is based on women with up to 3 positive nodes.
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Sorry... it was my understanding that up to 3 positive nodes was only in clinical trial. I had 1 positive node and my options were the clinical trial where they would do oncotype and based on that I would be chemo or no chemo. I did not choose the trial and just went ahead with chemo... they did not even do oncotype. MD Anderson wouldn't do it without entering the trial. Just my experience..... I am sure other places are different. -
It comes down to risk versus benefit. The Oncotype should give you a % benefit from chemo. You need to decide if that % is worth the risks. Are you someone who wants to throw everything they can at it, or go with percentages? It is a very personal decision, a tough decision, and as you can see, there is no black or white answer. Best of luck to you.
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Thanks so much for all the feedback!
Scarlett152 - how did you know that you were part Grade 1 and part Grade 2? That is my fear. Pathology is not always 100% accurate. One of my MedOncs even said that the reason for the positive lymph node could be that one part of the tumor could have been a higher grade and that the higher grade part could have broken off. Other doctor said a positive lymph node could mean that the cancer simply was in me for a long time and that the Grade 1 had the time to spread. . . . Also KI67 was done at the time of my core biopsy, which showed that the tumor was partially tubular. When my final surgical pathology came back after the lumpectomy, it made no mention about tubular - so I wonder how accurate my KI67 is.
Inks - The one positive node contained 8mm, so it was a macroscopic met.
Leighrh - I too think it's the positive node they are concerned about - also my "young" age and pre-menopausal status. One of the oncologists said that the data has not matured yet in regards to premenopausal women having a positive lymph node. (She basically told me to ignore the Oncotype score.) Another oncologist said I COULD strongly consider the Oncotype score. That's a good suggestion - to go with the oncologist I feel the most comfortable with. I am even having trouble with that lol! They all have their pros and cons.
Inks - Yes, the Oncotype test is based on women with up to 3 positive nodes. However, the studies were done on post-menopausal woman only. I am pre-menopausal.
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I also had a choice whether to do chemo or not. I went through chemo. I am so glad that I did! I know I did everything I could. I could not imagine how worried I would be about the cancer coming back if I had not done chemo! I hate to say it, but chemo does give you some peace of mind.
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Leighrh - My first opinion MedOnc didn't want to do the Oncotype on me either because she felt that the data hadn't matured yet for node positive pre-menopausal women. The second MedOnc wanted me to go into the same trial as you. However, I didn't qualify as I have microscopic focally positive margin. (Another loooooong story.
)KBeee - My Oncotype test said I have a 10% chance of recurrence with Tamoxifen alone and a 11% chance of recurrence with Tamoxifen plus CAF. (I called Oncotype and asked them how could that be? They said it simply meant I would have little to no benefit.) My oncologists are a little leery in trusting the Oncotype because my score of 12 was based on post-menopausal women. I normally would want to throw everything at this - after all, it's cancer. However, it looks like the chemo wouldn't do much of anything. I don't know 100% for certain though -- since my risk of recurrence is probably a little higher being pre-menopausal. . . To add to the complexity, the latest studies show Luminal A (highly ER/PR+, grade 1) may not respond to chemo at all. In my case, tumor biology (Luminal A) may dictate whether I should consider chemo - not what my risks/benefits would be. Example: My risk may be increased by the positive lymph node and my premenopausal status - but if Luminal A doesn't respond to chemo. it may be fruitless. . . Tumor molecular biology is something relatively new, so that is partly why I am in the gray area.
readytorock - you definitely have a point about chemo offering you peace of mind. I think had I been any other molecular type besides Luminal A, there definitely would have been a benefit - even if it was small. Luminal As are the only type of breast cancer tumor (so far) that probably shows little to no benefit for chemo. (But luckily strongly responds to drugs like Tamoxifen.) Unfortunately, the data for my situation won't be 100% definitive until after my treatment.
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They didn't bother getting my Onctype. Having 2 + nodes was enough for the recomendation to be chemo. I'm 41 and premenopausal. For me, just the fact that it had spread to my lymph nodes I didn't even question getting chemo. I imagined rouge cells floating through my blood stream trying to attach themselves to something. I had a mastectomy done so the chemo was because of lymph node involvement. I had one lump and DCIS spread throughout the breast.
With a lumpectomy I can see why chemo may be the best option -- did they say anything about how clear the margins were when removing the tumor? That's something you need to take into consideration.
Sometimes too much information is NOT a good thing-- I see that is what's adding to your confusion. I couldn't tell you whether my cancer was luminal A or lumional B. Dr. Google is not always your friend. Don't make assumptions and talk to your doctors and see what their years of experience would recommend.
My MO had a question regarding my HER2 status and I trusted her to get another opinion from the other Oncs and the Pathologist. After her discussion with them and my discussion with her, we chose the most aggressive treatment.
I don't want to look back 3 - 5 years from now and find myself questioning if I did everything I could have to beat this disease.
My suggestion is talk to your main MO, the one you trust the most, and get all your options discussed with all the risks as well.
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Fastwalker - so oncotype is based on postmenopausal women, but your oncologist was considering ovarian supression as it is, so you would be high-tracked to postmenopausal. And based on Soft and Text trials where they saw benefit to younger women from ovarian supression +AI the benefit was greatest to women under 35, since chemo did not put them to permanent menoapuse. It has been debated before that perhaps the biggest benefit from chemo in BC is that it shuts down the ovaries . Are you going to risk the side effects of chemo just for the benefit that it will put your ovaries to "sleep"? If chemo would be so powerful then why do triple negative recur so soon after chemo (they are mostly grade 3 after all)?
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FastWalker, had to go back to my pathology reports. Original core biopsy said grade 2. Pathology from mastectomy said grade 1 to 2 because the tumor was heterogeneous in morphology, meaning it ranged from gade 1 to garde 2 depending on the slide. The thought is that the Oncotype sample that was sent came from a stage 2 section of the tumor, rather than the stage 1 section, hence the higher than expected Oncotype score given a KI 67 of 5%. Hope that helps.
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Fastwalker - Getting 3 different opinions just high lights that choosing treatment plans is not an exact science. It also gives you the opportunity to evaluate, how much risk or perceived risk, you can comfortably live with. I too was premenapausal and had an oncotype score of 12. I had 2 positive nodes that were each larger then the primary cancer. So, while my MO was pleased to see my low oncotype score, both he and 2 other MOs strongly recommended chemo for me. I spent hours staring at that oncotype curve that showed a worse outcome with chemo then without at a score of 12. My MO said maybe because of the delayed start of Tamoxifen or an AI. So that again, points to ovarian suppression, Tamoxifen and AI being the most important component of treatment for low oncotype BC. Having said that, I completed 8 rounds of dose dense AC - T and I've never regretted it. It's basically a crap shoot whether or not BC recurs. So, it all comes down to what feels right to you. Hopefully, one day there will be something more scientific!
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SC_Coqui: I was also thinking about rogue cells floating through the body. I was told that cancer can even spread without the lymph nodes. It's very sneaky. . . I had one focally positive margin - it extended 1mm across the superior margin. My breast surgeon said she removed as much breast tissue as possible so no more surgery is needed. (Hope she is right!) Chemo wouldn't address a positive margin. Only surgery -- and possibly a boost of radiation would. Chemo is systemic. Surgery and radiation are local. . . I think the confusion is that I am so much in the gray area that the doctors do not know how to advise me. . . I think I am going to go back to my second opinion and re-ask some of my questions. Hopefully, I won't drive her nuts.Inks: I heard that too - that the main benefit of chemo for women with highly estrogen positive cancer might very well be from menopause. . . Even thinking about being pushed into sudden severe menopause is enough to make me nervous. There's so many things about breast cancer that totally stink. . . You're so right - I was surprised to learn from my oncologists that chemo only reduces your risk by 1/3 if your cancer is chemo-responsive.
Scarlett152: Thanks for looking that up. . . One of my medical oncologists told me that grade is subjective. Another oncologist said that different parts of the tumor can test differently. Scary stuff! We are basing our whole treatment plan on our pathology reports/oncotype results and we are told that they aren't always accurate.
Toomuch: Me too - I kept looking at the Oncotype graph, barely believing my eyes when it told me I would do 1% worse on chemo. I thought I must not be reading this right. I was thinking that too - perhaps because Tamoxifen is delayed and highly ER/PR+ breast cancer gets more benefit from hormone therapy than chemotherapy. . . I know they are doing clinical trials right now to prove that highly ER/PR+ premenopausal women with only 1-3 nodes may do just as well with just anti-hormonal therapy. Too bad it won't help us because the results won't be in for a couple of years! My original MO suggested AC-T, but I have pre-existing neuropathy issues from herniated disks. Did you get neuropathy? Did it go away? . . . Also, if you don't mind me asking did AC-T put you into permanent menopause? I am so not looking forward to that -- especially since we can't even take HRT.
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FastWalker - I did get neuropathy in my feet. It has gone away in all but my big toes. Once I got it, I did a lot of research and I learned about some supplements that may prevent it. I put them on the list of things I wish I had known. First, Vitamin B6 100 mg twice a day. I've taken it ever since chemo and when I don't take it the neuropathy gets worse. There are also some studies that L-Glutamine helps to prevent Taxol related neuropathy. Again, I wish I had known about these while I was getting chemo.
I had ILC and some studies have shown better results with an AI then Tamoxifen with this type of BC so after I finished chemo, I had an oophorectomy. I can't say that all of the results of menopause are fun but I can deal with the SE's and hope that the AI is decreasing my risk of recurrence.
The decision making time is definitely the most difficult time in the process. I hope that you find peace in your decisions.
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I had a positive node and my ONC said no to chemo with my low oncotype score, just on tamoxifen. I am happy with my decision and my ONCs recommendation.
You have to live with the decision so think it over carefully, you don't want to rush into a decision.
Best wishes to you,
Ali
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Toomuch: Glad the neuropathy is mostly gone. Hope it goes away in your big toes too. I should try the B6 100 mg for the herniated disk neuropathy! BTW, I asked my MedOnc if there is something I could do to prevent the AC-T associated neuropathy -- like icing my hands and feet and taking L-glutamine -- she said you could do it, but it doesn't work. She seems more open to options than most doctors so I wonder what made her say that. So frustrating. They should give everyone a list of what "could" happen -- and what "might" help. I feel like we are all left on our own -- and have to be our own doctors... Do you take supplements to help with the side effects of menopause? Are you doing anything preventative to protect your heart and bones? I heard that CoQ10 (as well as aspirin) helps to protect the heart. . . You are NOT kidding. I found the cancer diagnosis easier to take than all this decision making. It is making me mad.
ALittleBitBritish: If you don't mind my asking, were you premenopausal at the time of your diagnosis? That seems to weigh into the recommendations. (I am still premenopausal.) What stage were you? I am 2A. Did the doctor recommend ovarian suppression shots? (That would only be recommended if you were pre-menopausal.)
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Here is a whole thread of women with "old lady cancer" discussing their treatment descisions Topic: Stage 1, grade 1 and pre-menopausal
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Inks: Thanks for that thread - going to look at it now. I am stage 2a with one positive lymph node so I don't quite fall into the same category - but maybe the posts can give me some ideas.
. . . One of my MedOncs called it "old lady cancer" too lol! -
Everyone speaks of being highly ER/PR positive. I am positive too but 25% each weak/mod staining. Does it really matter how positive you are as long as you are over that 1-10% Threshold. I know you do get some benefits from hormone therapy and I'm not saying don't take it but should the estrogen% be weighed along with other factors to determine chemo. ? -
PatRN10: From what I understand, the higher ER+/PR+ that you are, the more Tamoxifen will help -- and the less chemo will help. Some studies even suggest women who are Luminal A (highly ER+/PR+ and Grade 1) could very well not benefit from chemo at all. (There are clinical trials being done to test this once-and-for-all.)
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Fastwalker, is there a difference in experience/credentials between the 3 oncs you've seen? I would tend to favor an opinion from someone who deals only in breast cancer -- just b'cuz it's very difficult for a general onc who needs to stay current on 20 or more different cancers and blood disorders to have the same indepth knowledge, nor do they see as many bc patients, so do not have quite the same level of experience with bc as a true bc specialist who is focused on bc 24/7.
Here's a list of the types of places you can find those sorts of oncs. If you haven't been to one of them, perhaps a 4th opinion would be helpful. http://www.cancer.gov/research/nci-role/cancer-cen... If you have already been to one of these, then I'd tend to go with the input from that level of specialist. These are the folks currently inovlved in research and teaching the next generation of docs, so may be able to add something to your thought process or make you feel more confident in your decision. (((Hugs))) and good luck. Deanna
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dlb823: That's very good advice! 80% of my second opinion MedOnc's patients are breast cancer patients. She is also involved in clinical trials involving breast cancer. The other 2 MedOncs seem to see many breast cancer patients too - I am just not sure the percentage. (It was hard to get that kind of info out of the front desk girls lol!) The Cancer Institute of New Jersey is the only NIH place in my state and they unfortunately do not take my insurance. (My insurance has been part of my problem.) . . . Right before I saw your post, I put in a call to my second opinion MedOnc. Hopefully, she might be able to give me a little more insight to push me one way or the other.
I actually called National Cancer Institute and they e-mailed me this regarding Luminal A breast cancer:
http://www.cancer.gov/types/breast/hp/breast-treatment-pdq#link/_1027_toc
It says for Luminal A breast cancer, "endocrine therapy alone for most cases" -- consider chemo if "high tumor burden (> or equal to 4 positive lymph nodes, 5 cm tumor or larger, or if you are Grade 3). I wonder if they take your age or pre-menopausal status into account though. Think I am going to give them another call . . .
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Interesting, because of all the options you were given, #2's actually sounded the most reasonable to me -- although that still leaves you with a choice. As you may have already researched, CMF is an easier chemo. But what's the sense in doing it if it will give you very little or no benefit?
I haven't read every post above, but has or can onc #2 give you stats on the benefit of CMF for women with your stats? I know when I finally went to UCLA, I was so impressed that my onc there could not only reel off the results of recent studies that were pertinent to my situation, which not only gave me confidence in her opinion, but also give me "insider" type percentages that in some cases refuted published literature (e.g. that the true risk of heart damage and leukemia from Adriamycin was higher than the literature suggested) -- information that clearly illustrated her intense involvement with breast cancer research and the most up-to-date body of knowledge about it.
Editing to add a thought... Rather than ask for percentages, maybe just ask how many bc patients they see in a month? That might be easier for them to figure out and give you a good basis of comparison.
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dlb823: The second MedOnc just called me back. (I like that about her - she is very responsive.) She answered all my questions.1. Am I Luminal A? (She said probably)
2. Does being 46 years old/premenopausal add to my risk? (She said in my case, no. They usually say younger premenopausal women are at higher risk b/c those are the women who get the most aggressive cancers. I was lucky and got "an old lady" cancer.)
3. What exactly does Tamoxifen do? When I stop taking it, can the cancer cells wake back up? (She said it blocks the estrogen from the tumor and stops it from dividing. But, yes, if I stop taking Tamoxifen the cells can re-awake. She recommends taking Tamoxifen for 10 years -- she said maybe by then, there will be new therapies.)
4. What chemo works best on slow growing Grade 1 cancer? (She said none lol.)
5. Can I do anything to prevent chemo associated neuropathy? (She said don't take any chemo with "T" in the letters.)
6. What do you recommend? Chemo, Zoladex shots, or just Tamoxifen? (She said all three could be pretty equal for me.)
7. If I do chemo, which one should I do and how much could I benefit? (She said CMF (because of the pre-existing neuropathy) and she feels I may only benefit about 1-2%.)
I think I'm leaning more towards just taking Tamoxifen. It's scary though. What if I don't metabolize Tamoxifen or what if the cancer becomes Tamoxifen resistant? (I guess, in the end, that wouldn't make the chemo work any better.) What if the pathology was wrong and I am not so strongly ER+/PR+ or I am not truly Grade 1? I guess I can't drive myself crazy, which is what I am exactly doing lol!
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Fastwalker, I didn't have the same diagnosis as you. Before I knew I 'had to have' chemo (i'm triple positive), I was thinking how would I feel if I had a recurrence from not taking chemo...I knew that if it came back and I hadn't done chemo, I would regret it so terribly. I thought it better for me to' throw the book at it' and know I had done all that I could. And there are no guarantees that it won't recur, I can have peace.
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I don't have my oncotype score but the statistics that my MO gave me said that if I didn't have chemo, I had a 12-15% chance of recurrence within 10 years with just hormones and radiation following my lumpectomy. I'm 45, premenopausal with a 1.8 cm tumor, no lymph nodes, clean margins. Biopsy was originally grade 1-2, final post-op pathology said grade 2. Chemo cut that recurrence possibility down to 6% for TC and 5% for TAC cocktails. I opted for the 2 drug regimen as there was little benefit with the added drug and the SE, including heart damage, were greatly increased. I also figured that I'm in pretty good shape now so I'll probably fair better with chemo SE's at this time and who knows what other health problems I'll have 5-10-15 years down the line if it comes back. My MO had a print out that looked similar to this:
http://www.lifemath.net/cancer/breastcancer/therap...
fixed the link - had the wrong one in there.
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I went through decision just a few weeks ago. Stage 1 with no lymph nodes - 46 years old. But oncotype was 32. So chemo was a must. Sloan kettering recommended CMF but 2 other places recommended AC or TC and so does the National Cancer center guidelines. All the recommendations are based on 10-15 year mortality rates. When the other 2 doctors found out Sloan was "still" giving CMF they almost fell off their chairs. Made me really doubt why I went to Sloan ("THE" cancer center). After a lot of soul searching and journal article reading, I decided to stick with CMF ("the milder " chemo). The difference in mortality rates was about 1.5% but the incidence of long-term know side effects from the ACT/AC regimen was about .8%. So for less than a 1% difference, I opted for the less toxix protocols. I have a friend who is PhD cancer drug researcher and he is feeling pretty positive about my decision. He said they are constantly finding issues with really long-term side effects but also developing drugs to fight them. He feels less toxicity is probably always better. Also, most hospitals (and insurance companies) only care about getting the #'s for mortality as low as possible, not effects on patients, long-term issues, etc. I felt like I was playing "craps" with my life. This was the hardest decision I have ever made... how to decided about your chances of mortality??? I've had 1st round and will have my 2nd next week. This is going to be a really hard year - 8 rounds of chemo and then radiation and then drugs for at least 10 years. Praying I made the right decision long-term, but feeling positive right now. Hang in there and get as much info as you can.
best of luck
A
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Cowgirl13: You definitely made the right decision being HER2+. . . I think under most circumstances I too would throw everything at it (including chemo) because I wouldn't want to have any regrets. My particular cancer (Luminal A) shows very little to no benefit from chemotherapy. (It does respond verystrongly to anti-hormonal therapy though.) If I felt I would get a benefit, I definitely would put up with the side effects for the peace of mind. (A few years ago when not much was known about Luminal A, I would have automatically been assigned to chemo.)
Marlanab: I think you made some very smart decisions. First off, that's great that the chemo reduced your risk to 6%. (I wish we all could get it down to zero, but as my MedOnc explained to me, all breast cancer survivors will still have some risk.) I also like your thinking regarding TAC vs TC. It gave you very little benefit - so why risk heart problems, especially since you have so many years ahead of you. My brother's significant other had chemo and radiation when she was 19. (She was diagnosed with Non-Hodgkin lymphoma.) She is 52 and on her second pacemaker, which is failing. I feel so badly for her. . . Thanks for the cancer math calculator. I have seen it before, but I'm going to re-visit it.
. . . Good luck with the chemo next week!Amyfsw: I would trust Memorial Sloan - after all, that's ALL they do - cancer. (And they are one of the top cancer hospitals in the world.) I think you made a very smart decision - all those side effects for 1% just isn't worth it in your case. You are my age and we have to take long term side effects very seriously. Who wants to live with heart problems or neuropathy for the rest of our lives? I mean if we had something more aggressive (say triple negative, God forbid, then being more aggressive is totally understandable because the benefits would be great.) . . . And I totally agree - this is by far the hardest decision that I've ever had to make - I truly wish I had a crystal ball. . . Yes, it is such a long process. You WILL get through this though. . . BTW, 10 years of Tamoxifen was suggested to me too. Make sure you tell your OBGYN that you are on Tamoxifen because although Tamoxifen blocks estrogen in the breasts, it has the opposite effect on the uterus and ovaries - it kicks estrogen into overdrive in those areas, which can result in ovarian cysts, etc. . . Good luck with the chemo! I saw a CMF thread here - maybe they can give you some good pointers.
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