Worried about taking tomoxifen, I just finished chemo.

[Jen-j]

Good afternoon all, I just finished my last chemo round, I'm so happy. But my oncologist wants me on Tomoxifen, I'm terrified, I have diabetes, asthma, CP and bad bone density also arthritis. I also have some severe allergies to two medicines. I would love some advice and help. I'm really worried, is this medication worth the risks?

[Happyrosie]

Please talk to the professionals. Can you ring the oncologist? Speak to your breast cancer nurse? Are you on good terms with your pharmacist? I don’t think the advice you need should be sought from us lay people.

[Jen-j in reply to Happyrosie]

Thanks, I thought others might have been in a similar situation.

[Hidden]

I was in a similar boat but with arimidex not tamoxifen. In the end I decided the risk was worth it if it stopped the cancer coming back. It is a personal choice but these cancer doctors are good at what they do. Talk to them about your concerns to see if they can put your mind af rest. Good luck.

[Jen-j in reply to Hidden]

Thanks for your reply, I spoke to my oncologist and breast nurse, we will have an in depth discussion and a blood test to check hormone levels before going ahead with anything. My team is amazing I trust them and know they will look after me.

[CB101]

Hi Jen-j - sorry that you’re going through this. Just wanted to share my experience in case it helps. 2016, I was treated for invasive lobular breast cancer (2 x lumpectomies and radiotherapy-no chemo needed). I was then prescribed tamoxifen. Read the leaflet in the packet, possible side effects, and thought ‘blimey!’ Decided to take it anyway. Have had no obvious side effects since. BUT what I would recommend is making sure you get all the follow-up appointments and scans you should (including a DEXA scan). I love the NHS but have found that when you’re finished with active treatment, you can fall off their radar a little. Totally understandable as they need to focus on the patients at the beginning of their cancer journey but I’ve become more proactive about my own care, and chased for appointments as needed. Hope all goes well for you.

[Jen-j in reply to CB101]

Thank you

[carolinenailsea]

Its such a difficult time for you Jen. I really feel for you and understand how tough it must be to know the best way forward. In the end it has to be a discussion you have with the medics. Good luck xx

[Jen-j]

Thanks, I had a call with my breast care nurse, it helped a lot.

[1965Katy]

If you are you post menopausal Tamoxifen is good for bone density

[Oak1]

Hi Jen-J. I’ve done almost a year on tamoxifen without a problem just occasional hot flashes. I did ask the oncologist and GP to write on the prescription that I needed 10mg tablets not 20. I take one first thing and one before bed which has worked fine. One 20mg may also work for you. Wishing you all the best

[pegomh]

I’ve taken arimidex, letrozol and now tamoxifen. I have serious hot flashes with T. The side effects with the others were too hard for me. I also started an antidepressant (first time) and it helps a lot. The dr know the right combination based on yr history but I wanted to share my experience. If you try it, let the dr know yr side effects and they can adjust accordingly. If you cannot tolerate it, you made an informed decision.

[Jennymary]

I was put on Tamoxifen in 2013 like you I had lumpectomies and radio, no chemo, I had no problems with Tamoxifen. Last year I was diagnosed with osteoporosis in my spine and I've been changed to Raloxifene as that's supposed to strengthen my spine, I started them a couple of months ago and haven't had any problems, whichever path you follow I wish you well x

[vocalEK]

Last year I had a diagnosis of Atypical ductal hyperplasia. I was told it isn't cancer, but that it increases my risk for developing breast cancer. Apparently it is common practice now to offer women with an ADH tamoxifen.

Two things affected my decision: The documented side effects, and the magnitude of my increased risk for breast cancer.

Back in the early 2000s when doctors began refusing to prescribe HRT to menopausal women, I went through 6 months of hell, mostly from hot flashes interrupting my sleep. I only ended that hell buy self-medicating -- importing hormones from another county. I was still taking HRT at the time of my ADH and reluctantly agreed to discontinue. Luckily, the withdrawal effects were much less harsh at age 70 than they were at age 50.

When I calculated my increased risk for breast cancer, it wasn't a huge number. I have no family history of breast cancer. I gave birth to 2 healthy babies and breast-fed them. Using the NIH calculator, I determined that my 5-year risk would be 5.7% compared to an average of 2.2%.

My lifetime risk would be 13.5% versus 5.4%.

I decided that the risk of ruining my quality of life was going to be pretty much assured if I took Tamoxifen, and if I did develop breast cancer, I would cross that bridge when I got there.

But meanwhile I came across a website where I learned that much research has been conducted on cancer prevention by increasing blood levels of Vitamin D. Notice I said "blood levels." Some studies that found no benefit of taking Vitamin D used the recommended dosage of 400 to 800 IU/day. Sorry, that's not enough to get your blood level into normal range if you are deficient. The web site below also offers a calculator to show how much vitamin D you need to take to get your blood levels to a designated level. I am aiming for over 60 ng/mL, so I am currently taking 10,000 IU. If my next blood test shows I have made my goal, I will drop back to a maintenance dose of 5,000 IU.

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