I have recently had a lumpectomy and lymph node removal after ER+ diagnosis and just had my check up. I was told that I now need radiotherapy, to stop all my HRT and to take tamoxifen for 5 years. I was quickly shown a graph showing this would only give me a 0.7% reduction in risk of recurrence, and then it was prescribed. I was told that I didn’t need to stop taking my fluoxitine antidepressants and they would check my herbal ashwagandha. I came away feeling a little confused and overwhelmed as in the two appointments with the surgeon before and after surgery, I don’t feel I have been told a lot about my type of cancer or future issues.
I had been very strict about not using Doctor Google but now I’ve had a look and came away with lots of questions and even more overwhelmed. I rang my breast clinic and the nurse couldn’t answer any of my questions and said she would get back to me. I feel a little let down by the lack of information and support so I was directed to this site as the only recommended place for knowledge.
My specific questions are as follows…
*With or without tamoxifen, do I need to stop my HRT? I have taken 2 years to get this to a point where I can function and I’m worried that without it I may really struggle to cope as my menopausal symptoms were affecting my work. Does HRT increase my risk of recurrence and if so by how much?
*The literature online states that fluoxetine should not be taken with tamoxifen, but the surgeon said it was ok?
*What are the figures for recurrence of ER+ stage 1 breast cancer over 5 years plus?
*Will tamoxifen put me into full menopause? And if so, will I then be changed to a different type of blocker?
*Can I take testosterone as opposite to other forms of HRT as one of my biggest issues was concentration and fatigue and I was just about to be referred for this to be prescribed?
Sorry for the ridiculously long post but I just haven’t got the answers from my clinic and feel a little dismissed.
Thankyou
Hi catflap
Thanks for posting on our forum
We hope to be able to respond to you tomorrow.
In the meantime our helpline is open from 9am tomorrow.
If you do phone our helpline please let us know that you have asked a question on our forum so that we know your query has been answered. Thank you
With best wishes.
Lisa
Ask Our Nurses service co-ordinator
Please read the Ask Our Nurses disclaimer Full details on how we collect and use your data can be found in our Privacy Policy
I feel in a similarly confused state through lack of information to me personally. I’ve googled & trawled so much information from the internet that I actually feel worse than before. My Tamoxifen still lays unopened in my drawer as I cannot bring myself to take it. I have my 3 month follow up telephone chat with my surgeon on the 21st, but I know she’ll just say take the Tamoxifen because you need to. I need personal recurrence/survival figures to help me make the decision about Tamoxifen for me.
Hi, Sorry you find yourself in this position. Last August I was diagnosed with er+ and pr+ vreast cancer. As this type of cancer is feeds on oestrogen and progesterone I had to stop taking my HRT which I had been taking for years. I went straight into menopause and have had such severe symptoms for nearly a year now that I decided not to take letrozole or any other hormone suppressants as I still work I need to ve anke to function which TBH at the moment I cannot with the symptoms I am experiencing.
Seriously thinking I might have to give up work.
I hope you get the answers uou need soon.
Take care and fo what is right for you.
Wishing you well.
This is exactly how I feel. Overwhelmed and contradicting information from so many sources and the people who should be able to advise me don’t seem to know themselves.
I’m not sure how I’m supposed to make an informed decision without facts and figures relating to both tamoxifen and HRT itself.
I was really struggling with work prior to taking HRT with concentration and fatigue. I’m a train driver which is a safety critical role so if I’m unable to cope, I’m scared I’ll lose my job!
I am very grateful that my cancer was operable and hopefully just needs the radiotherapy, so I feel very petulant complaining about these choices, but my head is spinning.
Hi catflap, Isn’t it terrible when we have to resort to this website for information. I had a long talk with my transgender daughter yesterday, who was very upset that I had decided not to take the Tamoxifen, having been on similar medication herself, saying there is far too much mis-information online. She feels I have bombarded myself & frightened myself about the side effects. She would be devastated if the cancer came back & I had not taken the medication. She asked me to talk to my surgeon next week, then not read anything else & at least consider trying the Tamoxifen, if I’m not happy then I could stop. I had grade 2 invasive carcinoma, lymph nodes negative, oestrogen receptor positive & HER2 negative, a 31 mm lump. A lumpectomy, excision, then clear margins & 5 radiotherapy sessions. When I read all the different cancers on here & the intense treatments, I feel as if I could be fairly low risk of a recurrence, but I don’t know & I don’t know how to find out. It’s the thought of metastatic cancer that terrifies me, if it came back exactly as I’ve just had it, I could easily cope with the surgery, not sure about chemo as I couldn’t have radiotherapy again. Are you taking Tamoxifen? I’m so confused now, I don’t know what to do for the best. I’m 76, which was why I was going to risk not taking Tamoxifen, but then I’ve frightened myself with thoughts of metastasis. I hope we both get the help we need, but I doubt it.
My cancer is the exact same and same treatment. I’m due to start the radiotherapy soon. So my thought process was the same as you. The risk is relatively low. However it’s a scary thought to have it come back 
I’m thinking of trying the Tamoxifen after my appointment next week, maybe I’ll relax a bit if I try it, even if I decide to come off it if I have any side effects I don’t want to put up with. I feel so fortunate at the moment that I seem to have sailed through my surgeries & treatment with few problems, compared to so many other ladies & seem to be healthy. Please post your progress.
Hi catflap
Thanks for posting.
It’s understandable you have many questions about the treatment you’ve been offered and that you feel you’ve been dismissed.
We hear from many people who are similarly confused and as @balchik and @Sparkle54 have mentioned many don’t start to take their hormone therapy treatment as a consequence of the limited information they’ve been given.
Some breast cancers use oestrogen in the body to help them to grow. These are known as oestrogen receptor positive or ER+ breast cancers.
Hormone therapies are given to reduce the risk of your breast cancer coming back. They do this by reducing or blocking the action of oestrogen on any remaining cancer cells. Giving or continuing with HRT is therefore not usually recommended for women after a diagnosis of breast cancer.
For some people their personal benefit of taking hormone therapy treatment for breast cancer does not outweigh the possible side effects they may experience from the drug. This makes it important to talk this through with your treatment team at a further appointment in order that you have all your questions answered and get all the information you need to make an informed choice.
So we can answer as many questions as we can for you, we’d encourage you to call our helpline to talk this through with us in more detail as we often find we can help people more by speaking to them on the phone.
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).
If you would prefer one of our nurses to call you. To do this complete this form ticking the box agreeing to a call back.
Our usual opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday.
Out of hours you can leave a message and we will call you back when we next open.
Best wishes
Catherine
Breast Care Nurse
Please read the Ask Our Nurses disclaimer Full details on how we collect and use your data can be found in our Privacy Policy
As we are unable to monitor for further replies, this thread will now be closed. If you have any additional questions or would like to provide feedback, please start a new thread, call our helpline, email us or request a call back.