mastectomy now tamoxifen

[Lulu427]

I’m 48 and just had a double mastectomy almost 4 weeks ago. My bc tumor was 1.2 cm and ER/PR positive and HER 2 negative with an onco type score of 21 and nymph nodes were negative. I was hoping I was done with treatment, but was told I need to take tamoxifen. I read a lot of horrible stories about the side effects tamoxifen caused. I know I should feel lucky that there’s something out there for me to take to help prevent the cancer from coming back elsewhere, but I’m so scared to take tamoxifen even though I need to. Can you please share your experience with tamoxifen and give advice on how to deal with side affects please?

[mathematics]

Hi Lulu sorry to hear the tough time you've had and now the worry of tamoxifen side effects. I had a grade 3 tumour that had gone into my lymph nodes and was aggressive. I was 47 years old when diagnosed and still having periods. So after a lumpectomy with left node clearance then another op for margin clearance I had six rounds of TAC chemo then radiotherapy. I looked and felt a mess especially as my left arm had developed lymphaedema and my periods had stopped and I was hairless thanks to the chemo also the steroids made my face look bloated and gave me a nice sun tan that soon faded. They then put me on tamoxifen for 5 years then letrozole a further five years. Yes there was side effects but I felt they were worth it. I wish someone had told me to go to a slimming club where I could keep my weight in check by eating the right kind of food and also to use a good shampoo such as growme to help with any hair loss. I use moisturiser all the time to keep the wrinkles at bay. I also used epsom salts to soak my swollen feet in, which was initially caused by the chemo however the hormone treatment did not help. They kept an eye on my bone density and put me on adcal tablets so I also drink a lot of milk and eat low fat and sugar free yoghurts . I was diagnosed 2011 and have been cancer free since the treatment so it was worth it. All the best and wish you the best in your on going treatment options.

[sharon1014 in reply to mathematics]

hello

I had ductal carcenoma, her 2 positive and pr positive. Had a mastectomy and 10 lymphnodes taken out. 12 rounds of chemo and radiation. Went on tamoxifen for 5 years and now Letrozole. No side effects except for weight gain. But could have been metapause. Got in a great eating and working out program and lost the weight. You can do it!

[Lulu427 in reply to sharon1014]

Thank you!

[1stgradeteach]

I had DCIS diagnosis in 2018. After a lumpectomy and 16 rounds of radiation, I was put on

Tamoxifen. I never had any side effects, but maybe weight gain was a result. Not really sure if it was the medication or going through menopause though. You will probably be fine on it. It was also somewhat of a security blanket knowing I was taking something to prevent cancer from occuring. Hope this helps!

[Figletf]

I was told to take Tamoxifen and two years into that I discovered my BC had spread to liver and bones.If I could do it over I would have done chemo to kill all the cancer still in my body.My surgeon was just too sure he had gotten it all with the Double Mastectomy 😩

All the best to you ‼️

[Lulu427 in reply to Figletf]

Thank you for sharing. I’m so sorry!!! Had your cancer spread to your nymph nodes when you did the double mastectomy?

[Figletf in reply to Lulu427]

No,I only had stage 1.My surgeon thought he had gotten everything 😩

[ToryH]

Everyone responds differently- I didn’t really experience many side effects. It’s best to see how your body responds and then discuss with your doctor if you need to try something else.

[KindArtist]

Our cases appear to be similar so thought I’d chime in. My stats: ER/PR+, HER2-, Oncotype of 19. Genetic test was negative. Lumpectomy with clear margins by less than a mm, none found in the 2 lymph nodes taken. I’m a few months ahead of you in our journeys, as I had my lumpectomy for a 2cm invasive ductal carcinoma (top size to be Stage 1A) on January 31st. I had no chemo as they felt the location and size didn’t warrant it, even before surgery, if lymph nodes were clear, which they were. I was surprised after surgery that no radiation was recommended instead of the 5 days I was expecting, because its benefit of adding an extra 8% to the already 91% odds of non-recurrence didn’t outweigh the effects of radiation itself. This was based on a relatively new study. However, the hormone therapy pill was highly recommended by my team at MUSC (a nationally recognized cancer treatment center) because, without it, I had a 10-12% of recurrence, which my medical oncologist considered “significant “ risk. I asked why, since the radiation oncologist had not thought radiation was necessary with about the same odds. It was explained that even though the odds were similar, with radiation, you are talking about localized risk of recurrence, and with hormone therapy, you are talking about full body risk - a much more serious risk that is not being monitored as closely as my breasts from now on. This advice was also based on a few new studies of women with similar cases. Taking the pill would add an extra 6% to my 88-90% odds that it wouldn’t return or metastasize somewhere else in my body.

Like you, I am very apprehensive about taking a hormone therapy pill, and what it will do to my body over time (osteoporosis, aging from collagen being affected, and God knows what else) as well as the possible immediate side effects - mine being menopausal symptoms(they have eased some), some joint pain, edema in my ankles; so I went for a second opinion at Duke, recognized nationwide as a comprehensive cancer treatment center. Both doctors I saw there highly recommended that I take the pill. I’m much older than you (66) postmenopausal and prone to blood clots, so they put me on Letrazole. I don’t like the idea of taking a pill that kills all of my estrogen. Every night that I take it I can’t help but think what I may be doing to my lifestyle (healthspan) by taking it…but then I think of the alternative- the cancer returning - and how that would really affect my health span and lifestyle so much more. Hence, my decision is to take the pill.