I am looking for as much help from people who decided not to take Tamoxifen and if their cancer recurred quickly after not taking Oestrogen blockers. I am 76 and quality of life is very important as I have always been healthy until I got breast cancer which is grade 2 invasive carcinoma, lymph nodes negative, oestrogen receptor positive & HER2 negative. The side effects for Tamoxifen are really causing me concern. I had a lumpectomy in April and an excision last week and get my results in two weeks. How can I find out the personal risk for me not taking Tamoxifen. I have a benign brain tumour and am not happy taking any medication. I don’t seem to be able to find out exactly what the recurrence figures are between taking blockers and not taking them, only that they are not a guarantee against recurrence.
Hi! I’m 72 and will be 73 in December. Years ago, I had califications and 2 negative biopsies in my left breast. While on vacation (holiday) last November (2023), I felt a lump in my right breast. It turned out to be a cyst which drained during a needle biopsy. The biopsy found invasive mucinous carcinoma and DCIS, neither showed up on a 3D mammogram. Prior to surgery, I requested an MRI, which, to my knowledge, did not show either cancer. In March, clear margins were not achieved with the first surgery, so, a week later, I underwent a second surgery which resulted in clear margins, but very close to the skin. There was no indication that the cancer was in my lymph nodes and I requested that none be removed and tested. I start 5 rounds of radiation today which should be completed by June 5.
I was prescribed Anastrozole, not Tamoxifen, but I read the horrors of their side effects on this website. Like you, quality of life at this age is paramount. I’ve been on bioidentical estrogen and progesterone for about 25 years and stopped using them immediately when I found the lump and have been experiencing sleeplessness, hot flashes, brain fog, some urinary incontinence, and other symptoms.
Due to prior sports injuries, I workout in the pool four to five times a week. I’ve given up running, tennis, and lap swimming. I can ride a stationary bike. I’m overweight.
I hopiced my husband, stage 4 cancer, at home in 2017 and now live alone. Since my BC was microscopic, stage 1, and I’m older, I question using these debilitating drugs! Although the medical oncologist wanted me to start Anastrozole, then stop taking it during 2 weeks of radiation, I don’t plan on taking it until after a two week vacation (holiday) at the end of June, if at all. And even, if not taking it may shorten my life by several years.
As a result, I understand that I may be risking shortening my life, but I’d rather enjoy 2 years of relative health than 5 years of suffering the side effects of cancer drugs.
Hi balchik,
Thank you for your post.
It is understandable you feel anxious about the potential side effects of Tamoxifen. Many people worry about how treatment might impact their quality of life and this can vary person to person. It may be useful to know that some people tolerate tamoxifen with little or no side effects.
Each person’s risk of cancer coming back (recurrence) is different. It depends on a number of factors including the type, grade, size and stage of the cancer, as well as general health and fitness. The best people to speak to about the benefit of tamoxifen for you are your treatment team as they will have all the information about your individual situation.
Some people find it helpful to have statistical information to assess their risk of recurrence. Statistics are averages based on large numbers of people. They can’t predict exactly what will happen to you. Your treatment team may use an online decision-making tool such as Predict. It uses information about you and your breast cancer to estimate how different treatments after surgery for early invasive breast cancer might improve survival.
Talking to someone who has had a similar experience can often be helpful. Our Someone Like Me service can match you with a trained volunteer who’s had a similar experience to you. You can be in touch with your volunteer by phone or email and they can share their personal experiences to answer your questions, offer support or simply listen to how you are feeling.
You can ring the Someone Like Me team on 0114 263 6490 or email them at someone.likeme@breastcancernow.org, so they can then match you to your volunteer.
Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK - prefix 18001).
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Best wishes
Katie
Breast Care Nurse
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