How important is taking hormone blockers after surgery for IDC?

Posted by cadunkin @cadunkin, Sep 5, 2022

I’m 71 & diagnosed with IDC. The tumor was very small, clean margins & no lymph node involvement. After much research & discussion with my oncologist I am leaning toward 3 weeks of radiation & no hormone blocking drugs. I understand that there is more risk of cancer returning, but the difference in that risk doesn’t seem worth the side effects of the drugs. It’s important to me to remain active so the bone loss, joint pain & fatigue would greatly affect my quality of life. I would greatly appreciate all discussion on others that have made this decision & how they are doing. All of it is scary! Thanks much everyone.

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@cctoo

In 2016 I had Idc and couldn't tolerate hormone blocks ..never took them after trying three of them.Q quality of life was most important. Now it has spread to armpit nodes! But really, I had six years pain free. Now I face radiation and shot of faslodex, fulvestrant? onve a month.

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I wish there was better meds than the current AIs. How is the fulvestrant shots? I heard they are painful due to the viscosity.

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@jade941

I wish there was better meds than the current AIs. How is the fulvestrant shots? I heard they are painful due to the viscosity.

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haven't started them yet .Suppose to start after radiation. Was not told anything about them!! and I question everything!!!

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@aej1954

I am 67 and also had a small tumor. I had a lumpectomy followed by radiation , nothing in my lymph nodes. I have since been on Exemestane, Anestrozole and am currently on Letrozone. The side affects for me were all bad so I may try Tamoxifen next but am not very hopeful. The bone pain is better on the Letrozone but I am still very tired, have hot flashes and headaches. My dry eye condition is also much worse.I have considered not taking them at all but am scared not to. The ones that have no side affects are very fortunate. It’s depressing because I recently retired and don’t feel like doing much. Everyone is different. Good luck to you!!

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Hello, my situation is very similar to yours. I had terrible side affects on all 3 ai's and have been on Temoxifan for 3 months. I had terrible hot flashes and my oncologist prescribed Effexor and that has eliminated almost all hot flashes. So far the Temoxifan has been the best for me. Good luck to you!! I was not very hopeful either!!

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We are the same age and I also was diagnosed with IDC. I had lumpectomy and did 20 treatments of radiation. After I went on Letrozole and I have side effects that are very tolerable such as sweating, some weight gain and some hair thinning. I’m told that the pill behaves as a deterrent for recurrence.
You may be lucky and do well on the pill. Worth a try and good luck.

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I’m 72, diagnosed with IDC ER-PR Positive HER2 negative. Jan. 22. Had a unilateral mastectomy with reconstruction and taking Anastrozole for 8 mos. now. Mildly sweating at night, mild joint discomfort…alleviated with stretching and exercise, possible mild hair thinning ( may have been reaction to anesthesia-telogen effluvium) now stopped and reversing. Basically I don’t notice any mild side effects anymore. I am mitigating possible bone loss with strength training and weight bearing exercises and upped vitamin D and food based calcium.

I feel safer taking Anastrozole; I think if it as depriving any lingering BC cells from being fed. I feel grateful that I don’t have difficult side effects ( I’m typically sensitive to meds).

It’s a once a day pill so if it’s problematic you can stop anytime and switch to another brand.

Best to you in your journey.🌸

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I was diagnosed with ER+, HER- Idc in September 2022. Had lumpectomy, clean margins, no nodes involved, 3mm size. No chemo as no node involved. Oncologist said radiation not needed as tumor small and estrogen blocker should help prevent recurrence. On Arimidex now for 5-10 years plus Fosamax as bones are very thin, not osteoporosis yet but headed that way. Weather is colder now so can’t tell if meds are making joints a bit more achy or the cold. A few hot flashes but nothing major. So far so good. trying to keep positive attitude. Bigger problem is failed total knee replacement from august 2021. Had major gi complications from original surgery so very hesitant to think about a revision when no guarantee that will be better. Hugs to all on this too common cancer journey!

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@catlady7

Hi @cctoo

After my second mastectomy in 2020, my margins and sentinel node were both clear of cancer cells. I definitely wasn’t stage 4. I figure I was stage 1, if that. Once I had my margins and a node were clean, I just didn’t care. I thought I was safe.

In retrospect, I wish I had given Arimidex a chance. However, I had truly horrible hot flashes after chemo in 2005, and I didn’t want to go through that again! By 18 months later, the cancer had metastasized.

I do tend to believe it was fate — or serendipity, as my Mom would have said — that I fell when I did. I had to have kyphoplasty, and a sample that was taken at that time confirmed cancer caused my spinal fracture moreso than the fall I took.

And you know what? I haven’t had a single hot flash in the three months since I started letrozole!

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We would never know. I have three friends who didn't take any treatment after the surgeries and they are healthy and good.

One thing that a lot of us don't know is that the stem cancer cells cannot be killed by the chemotherapy, on the contrary the stem cancer cells become more aggressive. When the recurrence is happening it's from those stem cancer cells that originally initiated the Cancer.

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@cctoo

In 2016 I had Idc and couldn't tolerate hormone blocks ..never took them after trying three of them.Q quality of life was most important. Now it has spread to armpit nodes! But really, I had six years pain free. Now I face radiation and shot of faslodex, fulvestrant? onve a month.

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Did you have lumpectomy or mastectomy?

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My oncologist started me on tamoxifen back in March. I started with a half dose, 10 mg., because I am afraidr of side effects. I do not want to take this medication and I am leaning towards discontinuing it. This is why I am on this site I would like to see what others are doing. I was diagnosed with invasive ductal carcinoma back in April 2022. I had a lump ectomy with clear margins and clear lymph nodes, I was told by my surgeon that I would not have to have chemo but only radiation. However, because testing showed that my chance for reoccurrence was at a number 44, my oncologist pressed for chemo which I did chemo was brutal. I have suffered very negative side effects from the chemo and I’m still recovering , this is why I do not want to take the tamoxifen. I am here to read other stories and find out what others are doing or not doing and the reasons for their decision.

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@lkmenard

My oncologist started me on tamoxifen back in March. I started with a half dose, 10 mg., because I am afraidr of side effects. I do not want to take this medication and I am leaning towards discontinuing it. This is why I am on this site I would like to see what others are doing. I was diagnosed with invasive ductal carcinoma back in April 2022. I had a lump ectomy with clear margins and clear lymph nodes, I was told by my surgeon that I would not have to have chemo but only radiation. However, because testing showed that my chance for reoccurrence was at a number 44, my oncologist pressed for chemo which I did chemo was brutal. I have suffered very negative side effects from the chemo and I’m still recovering , this is why I do not want to take the tamoxifen. I am here to read other stories and find out what others are doing or not doing and the reasons for their decision.

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Hi there. Sorry chemo was brutal (I was just talking to a friend who just finished). Did you mean your Oncotype was 44? Do you know your ER and PR scores? If ER is high, like 90% for instance, then tamoxifen should be very helpful. But if you ER is low, 10% for instance, you could discuss with your doctor whether tamoxifen is helpful and how much. If it significantly reduces risk that is something to think about and your doc can discuss that with you.

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