Hi there I am 46 years old and I have HER2 ER positive breast cancer stage 2 which has been treated with neo adjuvant chemo, mastectomy and now 15 rounds of kadcyla of which I have had 2 so far.
I started taking tamoxifen about 4 weeks ago and about 10 days ago I developed severe pain in most of my body but particularly knees thighs elbows and wrists. The pain stops me doing most things and I have been working and not much else. After a few days of naproxen and codeine I think the pain is finally starting to ease. My onc has said stop taking pending seeing the breast care nurse who I am waiting to hear from.
My concern is how I could possibly cope on this treatment but what are my recurrence risks without it ?
I feel the chemo sent me in to menopause so I wonder if tamoxifen is the right drug for me anyway ? Are there tests which can be done to find out my particular situation rather than just prescribe tamoxifen as part of a set pathway ? I also feel that the pill was prob feeding the breast cancer and I no longer take that. I have young children and want to improve my chances as much as humanly possible but I can’t function on tamoxifen. Many thanks in advance.
Dear pinklady3,
So sorry to read you are have such a hard time with tamoxifen so many are suffering with this medication (including me) I think you should call your breast cancer nurse tomorrow, letting her know exactly your feeling. Hopefully they will be able to point you in the right direction as no one needs to suffer in this day and ages.
I wishing you well very soon, and life can get back to a bit of normality to enable you to enjoy you family again.
Health and happiness going forward, please let us know how you’re getting on, we are all here to support you.
With love Tili:rainbow:
Thank you for replying Tilli. I will def talk it through with my breast cancer nurse this week. I’m sorry to hear you are struggling on this medication too. Have you found a way to cope? I do hope so. Sending you lots of love as well. Xxx
Hi. I had a different type of breast cancer to you, but I know that other people have suffered similar to you and some have swapped to Letrozole or another type of hormone blocker. I also read from a few posts on this forum that even changing brands seemed to help some people. Hope you find a solution quickly. Sending positive vibes and warm hugs your way. xxx
I had er+, her2 +++, however, as it was also a rare type of grade 1 it wasn’t treated with herceptin or chemo, just tamoxifen- which I actually stopped figuing that any cells left could just multiply by the her2 receptors anyway. I gave it 3 months, but the side-effects were that bad, I chose quality of life over minimal risk as no lymph nodes involved. From what I’ve read about this receptor combo - a lot, believe me- its optimal to treat both receptors at the same time, so herceptin and tamoxifen. If there is doubt over your menopause status, it would be a good idea to talk to your BCN’s or even better, if you can get in contact with your oncologist. I talked it out with my oncologist and she agreed that in my case it was reasonable to stop as low risk to me, but also that there are no alternatives in my case. You could have some other options that might be worth exploring with your oncologist.
Hi pinklady3
Thank you for your post.
It sounds like you have been having a difficult time with side effects since you started taking tamoxifen. As @Tili suggests talk to your breast care nurse about the pain you have been experiencing, they may be able to give you some suggestions about managing side effects. Like any drug, tamoxifen can cause side effects. Everyone reacts differently to drugs and some people will have more side effects than others, and often they can be temporary.
As @ k_123 says some people say they notice a change in the side effects they have if they take tamoxifen made by a different manufacturer. This suggests that some find tamoxifen produced by one manufacturer seems to suit them better than another. You may wish to discuss this with your treatment team or ask the pharmacist who dispenses your prescriptions if they can supply you with tamoxifen from the manufacturer you feel suits you best.
Tamoxifen can be used by both premenopausal women (women who still have periods) and postmenopausal women You have been prescribed it as your breast cancer is ER-positive. It’s usually given after surgery to reduce the risk of breast cancer returning in the same breast or spreading somewhere else in the body. There are blood tests that your oncologist may suggest assessing whether you are pre or post-menopausal, so do ask about this.
Your concerns about the risk of breast cancer coming back and what the risk of recurrence are for you without the tamoxifen are of course something you need to understand . Nearly everyone who has been treated for cancer worries about it coming back (recurrence) and you’re not alone in being anxious about this as you are having difficulty with the tamoxifen. The uncertainty and fear of breast cancer returning is very real. It is difficult for us to say what it means to you individually, but it is something your oncologist could talk to you about as they have all the details of the characteristics of your breast cancer.
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 0800 138 6551 or email them at someone.likeme@breastcancernow.org, so they can then match you to your volunteer.
You may be interested in our Moving Forward resources that are for people who have had a diagnosis of primary breast cancer and have come to the end of their main hospital treatment within the last 2 years. They include our Moving Forward booklet and Moving Forward courses.
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