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Stage 1 IDC without any hormone treatment after surgery?

BCboard63 Member Posts: 15

Diagnosed as IDC three moths ago and had mastectomy in July. Stage 1c, node-negative, tumor size 12mm, ER+, PR-, HER2-, Grade 2, Oncotype 21. One MO prescribed Arimidex and another Letrozole. but I don't want to take it due to existing medical conditions-osteoporosis, high cholesterol, poor liver history, frequent rashes, wrist pain, urinary frequency etc…From what I read, it seems the treatment related risks outweigh the benefits. For me, quality of life is more important. Mastectomy has already made my life miserable and really hate to live another 5 years with SEs. Also, I am over 63, kids grown up and wouldn't mind to leave sooner or later. Does anybody have similar diagnosis or experience share with me?

Thank you!



  • alicebastable
    alicebastable Member Posts: 1,934

    I'm 69 and I take Tamoxifen because I already have osteoporosis and didn't want it to get worse.

  • tb90
    tb90 Member Posts: 279

    BCboard63: So sorry to hear what you have been through and how that affects your confidence moving forward. Just wanting to ask how the Mx made your life so difficult. This is not typical and you should not need to suffer from a Mx. Hoping to help.

  • BCboard63
    BCboard63 Member Posts: 15

    AliceBastable: Thank you for the quick response. My 1st MO walked into the room without preview my medical history, she only looked at computer for pathology report and said will call me when Oncotype DX out. A week later, after read Oncotype DX report, she prescribed me Letrozole. I emailed her about side effects of bone loss and joint pain, she never replied. My second MO previewed my medical history before talking to me, prescribed Arimidex. When asked SEs, she said SEs is reversible and let me try Arimidex first. From what I read, some other SEs might be reversible, but bone loss is permanent.

  • letsgogolf
    letsgogolf Member Posts: 65

    BCboard63 Bone loss is not permanent. There are many drugs to stabilize and reverse bone losss.

  • BCboard63
    BCboard63 Member Posts: 15

    TB90: Thank you for offering help. When first heard the IDC Dx, I was too emotional to make rational decision. Didn't compare surgeons and hospitals. Just wanted to remove the tumor asap. Had bad lucky at the surgery day to begin with, arrived hospital at 7am for 9am surgery appointment, waited more than 4h for missing surgeon but was told there was no operating room for me, cried, angry, hungry and hopeless. Surgery did not begin until 2pm. After surgery, no reply for my emails or calls etc... A week after surgery, blisters developed and lasted for a few weeks. Now, more than 2.5 months passed, still have swelling around incision, drain sites, under armpit; Cannot lift arm, cannot side sleep, pain if speak loudly or coughing, woke up due to sudden short of breath; often needle pain in chest/armpit and upper arm...I am so depressed...

  • keepthefaith
    keepthefaith Member Posts: 856

    BC, sorry you found yourself here. I had a 21 onco-score also and osteoporosis. I took Tamoxifen for 2.7 yrs. My bone loss has gotten slightly worse over time while taking supplements. I am curious why your Dr's did not suggest Tamoxifen as an option. Being post-menopausal does not always mean an AI is best. Maybe another opinion would be helpful.

    I hate that you are going through problems with your MX also. I would definitely get someone on board that can help with that. Maybe others here will chime in. You are right. You do have to weigh the benefits vs the reward, but do as much research as you can before you make any decisions. If you are depressed, please seek counseling. It can be over-whelming. Best wishes!

  • Goldfish4884
    Goldfish4884 Member Posts: 57

    BCboard63: I was diagnosed at age 69, had double mastectomy, tissue expanders, implants. Not happy with all the rippling of implants but at my age not sure it's worth doing anything about it. The last 1 1/2 years I have tried all 3 aromatase inhibitors and tried tamoxifen too. Stopped tamoxifen 3 weeks ago because I had a total knee replacement and knew I couldn't deal with the side effects of tamoxifen (insomnia and severe nausea) and deal with this knee surgery. My oncotype score is 16. I haven't decided if I will try the Tamoxifen again after I heal from this knee surgery. It's a fine line between quality of life and suffering thru all the side effects. I tell myself to give it my best shot and if I can't live a happy life with sleep, minimal pain and stiffness and minimal nausea then I will just take my chances knowing I gave it my all. I will be 72 in January and just want to be able to enjoy the next 10 years or so, so we will see. It's good to hear others in my age category are contemplating whether it's really worth it. I would suggest trying the AI's or Tamoxifen and see how it goes, at least you will know you gave it a shot. Take care.

  • Yogatyme
    Yogatyme Member Posts: 1,793

    BC, your surgery situation and recovery are troublesome to read about. It seems like your swelling should be improving and it sounds like your ROM is very limited. You might want to get a referral from BS for physiotherapy to try to improve these conditions. I’m so sorry about all of this and I hope you get some relief.

  • DorothyB
    DorothyB Member Posts: 143

    My situation is similar in some ways.

    I am 61, post-menopausal and would rather have quality of life over quantity. My tumor was slightly larger at 2.0 mm and it was grade 3. My oncotype was 29 but I opted out of chemo (quality over quantity).

    My MO was recommending a different aromatose inhibitor, but when I reminded him that I have osteoporosis, he agreed with me that I should try tamoxifen first.

    I have been building up the dose slowly and have been taking 12.5 mg / day for the last 5+ weeks. (actually alternating 10 mg and 15 mg) I have some nausea, but not bad enough to be unbearable.

    Since I opted out of chemo, I feel that the tamoxifen is important, but am not sure if I will go up to 15 mg or go back down and just stay at 10 mg (dr wants me at 20 mg). I am also exercising more, eating better, trying to lose weight and trying to improve my mental / emotional state to improve my immune system.

  • tb90
    tb90 Member Posts: 279

    BCboard63: Your mx experience is not typical, but stating the obvious does not help you at all. If the blisters have gone and the incisions have healed, I would immediately see a physiotherapist. If the wound has not yet healed, I would start there. Some sharp, shooting pains stick around for a long time as the nerves heal. Actually for years, but diminish considerably quite quickly. Your limited ROM is understandable given your level of discomfort. I assume any exercises are difficult. Pain around the drain area is typical and after six years, is still tender for me. Swelling will continue to improve yet. But at this point, you should have a healed incision, ability to use your arm almost normally and ability to sleep on your side. Some zingers, swelling and tenderness would be normal. So please revisit your doctor and see a physiotherapist. You deserve to feel much better. And seek support for your depression. You already have by coming here. So please continue to let us know how we can help. Gentle hugs

  • BCboard63
    BCboard63 Member Posts: 15

    Keepthefaith, thank you! We have similar characteristics even with same onco score of 21. Don't know if this recurrence score means local recurrence or regional recurrence? Also don't know if this score with AI or without AI? My second MO wanted me to try Arimidex first, then Letrozole, Tamoxifen last. She said Arimidex and Letrozole are better even after I showed her my recent bone density results showing osteoporosis in both lumbar spine and femurs. What supplements you are taking to reduce Tamoxifen SEs?

    You are right, will do as much research as I can before make any decisions. I had a lesson from my surgery decision. If I did some research, might go to another BS/hospital, might do lumpectomy… I will definitely consider another opinion for AI. Actually, saw an interesting article at, thinking if fly to west coast to see this doctor. Best wishes!

  • edj3
    edj3 Member Posts: 1,579

    BCboard63, I'm post menopausal and have osteoporosis. My MO wouldn't consider the AIs, he said tamoxifen was the preferred treatment for me. One more data point for you.

  • UpstateNYer
    UpstateNYer Member Posts: 331

    BCboard63- your onco score should have also shown you a percentage for recurrence. It is for distant metastasis at 9 years, not local or regional. My onco was 48, so I had a 37% chance of recurrence taking AI alone. I opted for chemo and radiation after lumpectomy. Chemo was hard, but radiation much easier (2 more txts to go😊). RO and MO told me that taking chemo reduced my chance of recurrence at least 15%, but probably even more than that.

    Hoping the best for you moving forward.

  • Mymomsgirl
    Mymomsgirl Member Posts: 95

    BC I'm not sure where you live but it might be good to try another BS at a reputable Breast Cancer. There can always be complications with any surgery but you need a doctor that can see you through to the end.

  • BCboard63
    BCboard63 Member Posts: 15

    Goldfish4884, thank you so much for sharing yours. I am so happy to hear you also in my age category and have similar thoughts. I totally agree with you. I would rather have a life with better sleep, less nausea and walk to wherever I want with a shorter life than to suffer SEs with a possible longer life (just a guess percent)? One of the reasons I even don't want to try any AIs is all these treatment options just to prevent recurrence Not for total cure. If the AIs can keep me cancer-free, I may reconsider. MO said my distant recurrence is 7% with AIs and 12 – 15% without AIs. I know this comes from statistics based on patient database. Different mathematical model will give us a different predict recurrence rate. For example, British model will give you different recurrence rate than American model. Moreover, everyone's BC characteristics are different and recurrence rate must be different?? Nobody can tell until recurrence happens. As you said, I will just take my chances. You too take care.

  • "One of the reasons I even don't want to try any AIs is all these treatment options just to prevent recurrence Not for total cure. If the AIs can keep me cancer-free, I may reconsider."

    BCboard63, if according to your MO your risk of distant recurrence is 7% with AIs and 12% without AIs, then that 5% difference is the 5% chance that for you, AIs will be a cure.

    The reason that early stage patients are given system treatments (AIs,Tamoxifien, chemo, Herceptin, etc.) is because although these patients have not been diagnosed with mets, there is a risk that some breast cancer cells moved beyond the breast into the body prior to the removal of the cancer from the breast. These breast cancer cells are sitting somewhere in the body, dormant for now, but at some point they will start to multiply and a metastatic cancer will grow and spread. The role of systemic treatments is to track down these rogue breast cancer cells wherever they might be in the body, and kill them off before they can develop into a metastatic recurrence. When this happens, it means that a patient who would otherwise have developed a deadly distant/metastatic recurrence does not develop that recurrence. For that patient, the AIs were a cure.

    Although AIs do cure some patients, the reason these drugs are not considered to be a "cure for breast cancer" is because 1) They only work some of the time. Some patients who have rogue breast cancer cells lying in wait in their bodies will take AIs and will never develop a metastatic recurrence, whereas other patients will take AIs but will still develop mets; and 2) Once metastatic cancer is detected, either because it is symptomatic or because it is large enough to be seen on imaging, the AIs can be an effective treatment in holding back further development of the mets, but they will no longer be able to kill off the entire metastatic cancer. Once mets is large enough to be detected, there are too many cancer cells for the AIs to kill.

    Therefore, for a portion of breast cancer patients who have non-metastatic disease, AIs (and Tamoxifen, chemo, Herceptin and the other systemic treatments) will nip a waiting future metastatic recurrence in the bud, the patient will never develop mets (but otherwise would have had they not taken this treatment), and the patient will have effectively been cured.

    BCboard63, in terms of the benefit of the AIs, i.e. the amount that they will be able to reduce your risk of a metastatic recurrence, from the studies I've seen and the on-line prognostic models, I believe (as a layperson) that if your Oncotype score assesses your risk of a distant recurrence to be 7% with AIs, then your risk will be approximately 10.5% - 11% if you choose to not take AIs. My understanding is that on average endocrine therapy reduces the risk of mets by approximately one third, and I think your MO might have inflated this benefit a bit. I don't think that's the right thing to do, but from reading this board it seems to be very common as MOs encourage their patients to try endocrine therapy.

    Status of adjuvant endocrine therapy for breast cancer "The first Oxford EBCTCG meta-analysis involved almost 30,000 women in 28 trials with either node-positive or node-negative BC who were randomly assigned to tamoxifen (or not) for about 5 years [" >12]. It demonstrated a clear reduction in mortality in women at least 50 years of age treated with tamoxifen (P <0.0001) and a reduction in the annual odds of death during the first 5 years of about 20%. Subsequent analyses showed that the proportional risk reductions produced by tamoxifen were little affected by entry age or nodal status [" >13].Long-term follow-up has greatly strengthened these findings. The most recent meta-analysis with a median follow-up of 13 years showed that, in ER+ disease, tamoxifen for about 5 years achieved a reduction of yearly BC mortality of about a third throughout the first 15 years" (Note that AIs have been shown to be just slightly more effective (about 10%, I think) than Tamoxifen, at least over the short term.)

    Here are links to the PREDICT and CancerMath on-line calculators. If you input either your own info or even just random info, you will see that both models reduce mortality by 1/3 when you input that the patient will be taking an AI.
  • BCboard63
    BCboard63 Member Posts: 15

    Letsgogolf, Yogatyme, DorothyB, edj3, UpstateNYer, Mymomsgirl, Beesie, thank you all for your help, support and encouragement. I am glad to have found this forum.

    Yogatyme and TB90, I am going to see PT this Friday.

    Beesie, thank you so much for such detailed info, especially for the links, great tools! I input mine with the two predict models. For 15 years, PREDICT shows hormone therapy will have additional benefit of 1.5% to 3.2% comparing surgery only, while CancerMath shows cancer shortens life expectancy of a 63-year-old by 1.9 years without therapy, and therapy benefit is 0.6 years. I noticed that PREDICT ignores PR status (so I assume ER is more important?). Please see details below:

    Results from PREDICT:


    Results from CancerMath:


    By the way, the links to both articles at and seems not working.

  • BCboard63, your results on both models appear to be a bit more favorable that your Oncotype results, given that the Oncotype results are for 9 years whereas both on-line models project out 15 years. The other difference is that the Oncotype result predicts the rate of metastatic recurrence - and those who develop mets might survive for many more years after their diagnosis - whereas the two on-line models measure mortality rates.

    • Oncotype 21, 7% 9-year metastatic risk if you take an AI; approx. 10.5%-11% metastatic risk without the AI. (I assumed 1/3 benefit from endocrine therapy).
    • PREDICT: 6% 15-year mortality risk if you take an AI; 9% mortality risk without the AI (there's that 1/3 benefit). Yes, PREDICT does not account for PR, but PR is often related to Ki67, which is included (but which is information many of us don't have).
    • CancerMath: 8.2% 15-year mortality risk if you take an AI; 11% mortality risk without the AI. Not sure of the math used here since the chart states "32% fewer cancer deaths after 15 years" which mathematically would be 12%. (Note that I replicated your data and ran the model using the pictogram, which I find easiest to interpret.)


    One other difference is that the Oncotype model does not incorporate age, other than presenting different results for those who are 50 and under and those who are older than 50. There is a computer program that Genomic Health (the Oncotype people) makes available to Oncologists, in which the MO inputs the Oncotype score (21, in your case), along with the patient's age, the grade of the tumor and the size of the tumor, and whether the patient will be taking Tamoxifen or an AI. The model then kicks out a more personalized metastatic recurrence risk estimate. This is the Oncotype RSPC (Recurrence Score Pathology Clinical) model. Given your age, your smaller than average tumor size and that the tumor was grade 2, I suspect this model might present a bit lower than the generic/average 7% risk associated with a 21 score. If that was the case, it would would put the results closer in line with the two on-line models.

    So here's the question. Does a 3%-4% reduction in mortality make the AIs worth trying for you, or not?

  • flashlight
    flashlight Member Posts: 311

    Hi, I like to look at it like Wallan wrote: Mar 5, 2018 06:46PM wallan wrote:

    Hey :

    I think people do not really understand statistics. An average is the number who died divided by the all the cases. However, there is variation around that average. So for example, some die in 1 year, some in 10 years, some in 2.5 years etc. All these are added together and divided by 3 (because there are 3 numbers here). But notice the variation in the numbers. Its not reflected in the average. The most important number to us is this variation. And this can be expressed in different ways too and therefore is not relevant outside the study it was calculated in. And no-one looks at this variation if they are not trained and have applied statistics in what they do.

    Then there is there is the number of cases or "sample size". The more relevant and bigger that sample size, the closer to the truth for the whole population is the average. But if the sample size is smaller with larger differences in the numbers, the average is really meaningless. That is why large studies with thousands of women over a longer time span is more meaningful. Then again, its not perfect because of differences in treatment, where women live, their lifestyles, if they have bad genetics etc. Plus, biology is variable. People do not respond exactly the same to the same treatment. Its a fact and impossible to predict or control. That is why there are ranges of normal values in lab tests. And even then, not everyone falls within that "normal" range, yet they are healthy and normal for them.

    So in the end, statistics are only relevant to the study in which they were collected with caveats. They are guidelines only, not "truth". BC survivors should follow treatment guidelines of their doctors and do everything they can to keep healthy otherwise. It does not mean you will only live "3 years" if that is the average. Again, it means you need to follow the guideline for treatment based on probabilities, not "truth" or "certainty".

    Any doctor that tells you, after diagnosis of mets, that you have x number of years, is wrong. There is no way they know. And the MO who said the study of 3 years average life span after mets diagnosis is relevant is correct but that does not mean anything other than guidelines for treatment.

    Its too bad we get so freaked out over stats and probabilities. The probabilities we should focus on is that we all fall on the good side of the odds. 70% of BC survivors will NEVER recur or will be NED in their lifetime. If you want to see truth in stats, focus on that number.

  • BCboard63
    BCboard63 Member Posts: 15


    Thank you so much for such detailed analysis, explanation and summary. Your help is greatly appreciated!!!

    I didn't realize the difference between Oncotype and the online tools before. Thanks for letting me know. For Oncotype, the distant recurrence is based on 9 years. Does my recurrence score of 21 also based on 9 years? I never understand how the recurrence score of 21 is related to the distant recurrence rate 7%.

    Regarding to the PR, thanks to point out it is related to Ki67, I really learned a lot from you. My Ki67 is <10% (low proliferation rate). At one point, I worried about the conflict PR status from my original pathology report and Oncotype DX report. The former gave me PR- (<1%) while the Oncotype DX said PR+ (6.1%). Since the treatment is so dependent on these subtypes, so I am always curious which one is more reliable?

    You mentioned Oncotype RSPC is used by MOs, is this a standard practice or hospital dependent? None of the MOs I visited used assistant tool. CancerMath is developed by MIT and MGH, do MOs at MGH use CancerMath for their patients? For prognosis purpose, between Oncotype RSPC and online tools, which one is recommended by the authority?

    To answer your question, "Does a 3%-4% reduction in mortality make the AIs worth trying for you, or not?" I think I will not try due to my age and existing health conditions. If I am younger or have young kids, I will definitely try it. Moreover, as mentioned before, I saw an interesting article, see below. According to the author, "women with smaller-than-1cm, node-negative, ER+ BC of low histologic grade have an excellent prognosis without further therapy". I understand my tumor is 2mm lager, but still want to take my chance. Again, It's just a personal preference.


  • flashlight
    flashlight Member Posts: 311

    Hi BCboard63, I am 68 and before I decided to take Tamoxifen I read all these statistics. There are enough out there to drive you crazy! I understand where you are coming from. It is the unknown that worries us all. Good luck to you.

  • BCboard63
    BCboard63 Member Posts: 15


    Thank you for sharing your thoughts. Yes, statistics and probabilities are subjects I am not good at it. But I totally agree with you that "BC survivors should follow treatment guidelines of their doctors and do everything they can to keep healthy" theoretically. As said, I have too many health issues to take AIs. Again, this is just my personal preference. Even most of my family members don't agree with me, and think of me as "an old lady doesn't listen to doctor". Life is unpredictable and so my BC.

  • windingshores
    windingshores Member Posts: 160

    I had a lot of health issues including lupus, spinal issues and already pretty severe osteoporosis. But I have taken Femara now for 5 years. No new fractures. I have trouble taking osteoporosis meds of all kinds but am still trying. Tai Chi has helped me a lot. I would at least try a medication before rejecting it entirely but everyone is different.

    Oops just saw that this thread is kind of old!

  • jons_girl
    jons_girl Member Posts: 441

    bcboard. Hope all is going well for you! I had a very supportive MO. He agreed that there were not many or any studies on pts like me regarding recurring Br cancer etc. a lot of the studies are done on higher stages/grades of Br cancer. He was fine with my decision not to take meds or to have radiation. I told him if it came back I wanted tools to be able to use. He was ok with my decision just wanted me regularly rechecked. I get ultrasounds every 6 mo. And may throw in a periodic MRI too. But they can’t see cancer on me with 3D mammograms due to my extreme dense tissue. So I continue to be checked every 6 mo. And that’s doesn’t bother me. QOL is very important for me. I’m younger. But that’s was my choice. Sending a hug your way

  • BCboard63
    BCboard63 Member Posts: 15

    Hi windingshores,

    Thank you for sharing your experience! Severe osteoporosis is one of reasons I rejected AIs. I often feel bone pain here and there. If it's not every week, at least every other week, I have to apply pain reliving patch somewhere on the body. I have been taking Calcium w/Vitamin D for quite long time. I am glad to know that you have taken 5 years Femara but did not cause new fractures. It's a very encouraging news!

    Although the thread is not new, your response is coming at a very good point. I have been rethinking my decision due to new findings of right breast issues. During 6 months mammogram follow up last December, a new area of distortion found in addition to other masses including an intraductal papilloma (already two years). I went to hospital for stereotactic biopsy of right breast in February. However, the procedure was cancelled secondary to technical factor of breast compression too thin to proceed with the biopsy. So, radiologist recommended surgery. My MO thinks if I take AIs now, can achieve effects of one stone kills two birds, taking care both left and right breast. I haven't made decision yet. I am scared of having another surgery since I have not totally recovered from left mastectomy. I am also scared of taking AIs.

  • farmerlucy
    farmerlucy Member Posts: 596

    I tried Tamoxifen and Femara, for me Tamoxifen was much easier. Not quite as effective, but a decent option.

  • BCboard63
    BCboard63 Member Posts: 15

    Hi Jons_girl,

    I am so happy to know you share my thinking and are lucky to have a very supportive MO. I have tried quite a few MOs, but none of them are supportive and patient enough to listen to me, they just want to follow standard guidelines. Up to now, I am not able to find any MO to support my thinking. Everyone thought I am just crazy. Where is your MO? I am in NYC. Sending a big hug your way!

  • BCboard63
    BCboard63 Member Posts: 15

    Thank you farmerlucy

  • jons_girl
    jons_girl Member Posts: 441

    Hello BcBoard63:

    I’m in Oregon. But I’m actually being followed now by one of my breast surgeons associates. I’m not taking meds so no reason really to have him follow me. But I’m making sure I have check ups every 6 mo. Also I do my manual exams myself monthly and yearly manual exam by breast surgeon who is following me.

    I told my breast surgeon who is very popular here when I was told I should follow with a MO, I wanted a MO who cared about pts like she did. He was then recommended to me as I recall.

    I would encourage you to keep looking for a MO who is the kind of MO yr looking for NYC is huge and there are lots of drs to choose from go on the various health systems and read their bio’s you can tell a lot by what they say about themselves if you have time to do that

    Thank you for the hug hope you have a wonderful weekend

  • BCboard63
    BCboard63 Member Posts: 15

    Hello Jons_girl,

    Thank you so much for the quick reply and detailed info! Though I have chance to go to some big name cancer hospitals, but some drs are quite arrogant. Maybe just I am not lucky enough and haven't found a good MO yet. Really hope someone in my area can recommend a caring and supportive MO they are using.

    You too have a wonderful weekend!