Just diagnosed with Stage 1AN0 (before surgery) IDC

MSQ

I was just diagnosed, no family history and shocked; however, I am afraid this was caused by HRT.

I have met with the surgeon, done the homework, read the reports, the forums, a zillion articles and still wonder .... will I survive this over the long term? My age is 55 and am otherwise in good health.

Also, how bad will the Tamoxifen side-effects be as the list of side effects from the website and the boards is extensive, scary and depressing? The hair loss, fatigue, discharge and nausea sound wonderful. How are others doing on this medication with a similar diagnosis?

mustlovepoodles

Sorry that you find yourself here, but welcome. Are you still menstruating or are you menopausal now? The reason I ask is the meds are different. Tamoxifen seems to have a lot of SEs and it's used in women who are still having menses. Aromatase inhibitors (AIs) are used in women who no longer have periods. They can also have SEs, but in my opinion not as harsh as Tamoxifen.

I have taken Femara for almost 2 years. I already had arthritis, so I have some joint pain. It's not any worse than before. I have actually lost about 20-lbs in the last year. My hair came back from chemo fuller and with more body. Its still very fine, no change there. My sister has been on Arimidex (another AI) for 5+years and she hasd no SEs, whatsoever.

It looks like your cancer is early stage, which means you have very good odds. You'll know more once they get the lump out. Try to hang in there. I know it's not easy, but don't give in to the what ifs? They will destroy your energy.

MSQ

I had an oblation so the answer to that question is no.

I was on hormone replacement therapy, which they do not accurately warn of the 75% chance of breast cancer, or I never would have oped for it.

I am still in menopause ... but the surgeon stated I would go on the Tamoxifen. Do I contact an oncologist now before I know the results of the lymph nodes, as the option for "cyber knife" is available if it is negative?

My surgery is on the 29th and my pre-op check up is Tuesday. I can get through the surgery and the radiation, but the meds really concern me. What will my quality of life be for at least five years, and do they put you on something else after that time has elapsed?

What is the prognosis for this type of cancer as everywhere you read about this type of cancer, it can come back after twenty-years, even if it is caught early? Did you have hormone replacement therapy? They are giving this out like candy.

Thank you for replying.

Anonymous

RE: meds. If you are truly in menopause I would think you would be matched with some kind of aromatase inhibitor and not tamoxifen, which is typically given to those still menstruating, if your path shows hormone +. Do you have your pathology yet? If so, sharing it here would be helpful. The current research is leaning towards 10 years on AIs, not 5, but of course you have the right to refuse altogether or take it as long as you are able.

Many, many of us have little to no side effects, and that is why you don't see many of us posting a lot on these boards about side effects. Most won't drop in and sing the praises of a drug, but instead will seek out others who are having negative SEs as they are so that they can find answers about what to do to alleviate them.

You may very well be one of the millions of women that can tolerate AIs with no problems. I wouldn't rule them out because those who have negative experiences are a bit louder in their posts.

My personal experience was tamox for a year, then after confirming chemo put me in permanent menopause, I went to arimidex (I did not tolerate it well after about 18 months); currently I'm taking aromasin, and although I have some side effects, I'm figuring out how to mitigate them. With + nodes and a high risk dx, I really don't want to give up on taking an AI yet.

However, there are other choices you can make that don't involve rx to reduce your circulating estrogen. There are several threads on that subject here on these boards. Good luck!

Claire in AZ

Georgia1

Hi there MSQ. I had early stage BC so will try to answer your questions here. Please of course bear in mind I'm not a doctor:

There have been studies that HRT can increase the risk of ER+ breast cancer by increasing the amount of estrogen in our bodies. There have also been studies that the use of birth control pills increases the risk of BC. Same for drinking alcohol, etc. So as difficult as it may be, try to look forward not backward. We all did the best we could with the information we had at the time.

Yes, if you have early stage BC you should try to meet with a radiation oncologist now. You may be eligible for IORT, for example, which is "one and done" radiation at the time of surgery. There is also partial breast radiation, like CyberKnife, where you're done in a week. And accelerated whole breast radiation, where you're done in 3-4 weeks. Eligibility for each method is different, and some of these options are currently only available in clinical trials. But it's not too early to start getting advice on your options.

I'm now on Tamoxifen and have had no side effects in the first month. If you jump over to the "bottle of Tamoxifen" thread you will see huge variations in side effects; some women have no SEs and some have nausea or night sweats. But the proven benefits, to me and many others, are well worth it. Most SEs seem to be temporary and I know no one with hair loss.

It is not up to your surgeon which drug you choose because that is not her area of expertise. A medical oncologist, not the surgeon, will provide you with information on AIs vs Tamoxifen. You may also be eligible to get an Oncotype DX test run on your tumor post-surgery, which will provide you with a recurrence risk score. So no rush there. My MO and I decided I would start on Tamoxifen because of my osteoporosis and then consider an AI in two years, so yes you could conceivably switch.

I know this is all so overwhelming! What helped me was taking it step by step. If you post the specifics of your diagnosis in your signature line there are lots of smart women here who will help you get through this. Like a lot of challenges, it's worse at the beginning and it will be over before you know it.

beach2beach

Hi,

Sounds like it is very small that is great and sounds like you are choosing lumpectomy. I am(51) on Tamoxifen so far for 5 months. I was expecting every known side effect that I read people were having to happen to me. Honestly, outside of feeling like I'm very dehyrated, I'm doing well on it. In the first few weeks I had a little discharge, that cleared up. Bit of a headache which I noted occurred when the med would peak at about 5hours, that went away also. I moved around when I take the pill so that if any affect would happen, it would occur while I slept. Has it changed my quality of life? The answer is no for me. Whatever I feel from it, I refuse to let it get the better of me, so far so good with keeping it like that. I walk a lot of miles, and try to keep thinking I am doing the most I can in keeping this from recurring.

You are still dealing with the news. I did not know definitively the status of my nodes until after surgery/pathology. They did not expect to find anything, and I was fortunate enough that it did turn out clean. I opted for a mastectomy so I did not have any radiation. The Oncotype DX test, which most do now, will also give your team the information needed if chemo would benefit you or not. It is hard not to worry about recurrence, but I've heard from so many that as time goes by and you are back to living life again, that you will spend less time worrying.

MSQ

First of all, thank you, thank you, thank you for taking the time to reply. I did not realize the other radiation treatment options were available to me as the surgeon did not mention it.

I will send an email and be on the phone first thing in the morning to get into a radiation oncologist first thing tomorrow. We are friends with the doctor who managed my husbands care for HPV tonsil cancer, which spread to the primary lymph node, and was caught early. Now it is my turn ... He has already sent us the contact info for the correct person for breast cancer. It was my misunderstanding that I was to wait until after the surgery to do this as some offices offer the cyberknife and others do not. Thank you for clariiying this so I can get this taken care of before and not miss out on options that may be available to me.

I updated my signature as you suggested. Did not realize I needed to change the settings. There was a test on the "Histology Image Analysis" that was 20% (borderline) for the k167. Not really sure if this just means there is a lower chance of this spreading down the road. This type of cancer, Hormone Receptor Positive just keeps on giving.

How do people catch this if this happens, ten to twenty plus years down the road?

Catsme

Hi MSQ, I too was 55 at time of DX. I chose mastectomy, so can't speak to radiation, but I've been on Arimidex for one year, and had a little bit of nausea at first, but started taking it with food and that fixed that issue. No other side effects, and no impact on QOL.

As far as catching this years down the road; if you mean how is it found if it reoccures, my BS & MO, talked with me about what things to look for, and let them know of any new symptoms that don't go away or that get worse. I learned the two week rule from this community.

Sorry you find yourself here, but this is a great place for support.

Georgia1

Good morning. The Ki-67 score is helpful but most doctors now do not rely on it; do ask about the Oncotype DX test which is better supported by science and is sort of a battery of lab tests of which one is the Ki-67.

As for catching a recurrence, you will probably be advised to get six-month mammograms for awhile.

Best of luck and keep us posted when you can.

MSQ

The MO called a 20% K 167 score high.

My surgery is Monday. He stated that if the tumor is 10 mm or maybe 11 mm, then I need to get chemo.

The MRI measured the tumor at 10 mm. Does anyone know if fatty tissue is attached to most tumors which causes the actual size to be downgraded during the pathology that is done after a lumpectomy? I am literally on the borderline. The MO showed me the MRI and pointed to a "puckering" next to the tumor which he explained could be fatty tissue. I am obviously very nervous, and wondering the odds are of the tumor size being downgraded to a smaller size.