Newly diagnosed Tamoxifen or not

Hi birdlady888--welcome to BCO! Sorry you have found yourself here though.

If you are ER receptor positive, then any outcomes/statistics you are given generally assumes you are taking tamoxifen or another type of hormone therapy drug. My understanding is it can reduce your risk of recurrence a whole lot. And a negative lymph node doesn't mean that no cells escaped from your tumor---it can still happen, though a negative node is indeed a great thing. I would discuss this all with your oncologist, to get a good grasp of the risk of going without tamoxifen if they think you need it. And ask them about your sister's stomach cancer--I don't believe they use tamoxifen for stomach cancer, so it wouldn't have prevented that from happening. Anyway, it's not risk free either way---not taking it means a higher risk of recurrence, which for breast cancer tends to mean metastatic (stage 4) recurrence rather than needing an additional lumpectomy. But then there's the risk of side effects. It's hard either way. Many people have side effects and struggle to take it, but keep in mind that not everyone is online, so what you read isn't necessarily a fair sample. Meaning, people who are happy and not having problems are less likely to discuss it online.

I have been taking tamoxifen for 2 years, and have only recently started having side effects that are affecting my quality of life. For me, it's still worth it to keep taking the meds...as of today, the joint/muscle pain is better than having it metastasize. I could change my mind, but that's where I am. I have 8 years to go. But it took 2 years to get here...I had a good 2 years of protection from the tamoxifen with little issue. It might be worth trying...you could be one of those people who doesn't have issues, and if you do, you can always stop or switch to a different drug.

Your oncologist should be the one directing and prescribing your hormone therapy. When you meet with your oncologist, tell them everything you typed on here and they can help you wade through it all!

Hi Everyone,

Can anyone shed insight on if you did chemotherapy and hormonal therapy or just hormonal (tamoxifen).

I’m ER+ and PR+ and recently did a double mastectomy all my lympnodes came back negative so there’s no indication of it spreading (CT and bones scans also clear).

My treatment is moving to preventative once I heal from the operationand the doctors have said hormonal therapy is very important but chemo is up in the air. I don’t want to do chemo if it can be managed by hormonal therapy - any insight!?

Thank you

So sorry to read about your situation, Birdlady888. Whatever your oncologist prescribes, I think you should give it a try. If the side effects are unacceptable, at least you know you gave it a shot. There are now different accepted dosages of Tamoxifen, so you could play with that variable too. Depending on whether you are past menopause, there may be several other drug options too. Best of luck to you in whatever you decide.

Birdlady888, thanks. One advantage to having all my reproductive innards removed is that it makes taking Tamoxifen safer - no worries about uterine damage or cancer. There's a very small risk of blood clots, but my MO says that since I take the daily low-dose aspirin I should be safe. I've been taking Tamoxifen since right after Christmas, and my only side effects so far are hot flashes, which are fairly mild, and were frequent in February for about 5 hours a night, but now I'm down to just a few each night. I had weird leg cramps at first but they've gone away (might be the magnesium I started) and only show up if I eat too much sugar late at night. When I first wake up and sit up, there's a brief nasty wave of pain that rolls down my body but it goes away very quickly, especially if I stretch. I already have osteoporosis, and Tamoxifen helps strengthen bones. The AI alternatives are bad for the bones and you have to take Prolia or some other bone-builder with them, and then THOSE have side effects. I wanted the simplest path.

Hi bird lady---the tattoos just help them line up the machine. It's not that they are aiming the radiation right there!

Thank you for asking the exact question I have had on my mind for the past few month. birdlady888 Your diagnosis and treatment seems to be similar to mine. Currently my lumpectomy and radiation are both done, and I'm just stalling at this last step of Tamoxifen or not. My MO was most informative and helpful, but ultimately the decision is up to me. It feels like it should be an easy decision but it's not. My main concerns are possible side effects, the list of which seems to outnumber the good. Part of me feels like stage zero is not so serious that I need to risk getting another cancer from the meds. But the other part of me wants to at least give it a chance before I shut it down.

Reading through everyone's thoughts and experiences is helping a lot, but I also know everyone responds differently. So I will be coming back often to get more insights so I can make an informed decision.

Elephant thank you for the advice! I wasn't aware they come in lower doses. I will definitely ask my MO.