I am sorry you haven’t had a response to your question. I am sorry to hear what you’re going through, it is not a surprise that you feel afraid of the unknown.
I am sure someone will be able to share their experience with you. In the meantime please know that our nurses are here for you any time, here on the forum on the Ask our Nurses your questions or over the phone 0808 800 6000.
Thankyou for your reply. I feel I should probably add the medication they wish to put me on …
Zolodex for induced menopause
Zoledronic acid for bones &
Ribociclib (target therapy)
I felt rushed at my appointment as she was running late and I had lots of questions I had prepared but never got to ask. Not her fault I know.
i was told that because I had 5/15 positive nodes I was high risk of recurrence which completely threw me as my onco score was 7 which I thought meant I had a low risk of recurrence and that’s also why I didn’t need chemo
I’m the opposite in that I had a highish onco score but no lymph involvement. I had chemo though (partly due to onco, partly high grade of tumour). I think protocol here (Scotland) is chemo if there are positive nodes. They don’t even bother with the onco test.
I suspect the aggressive hormone treatment is in lieu of chemotherapy. I’m just a few years younger than you and my treatment plan also included ovarian suppression (Prostap) but tamoxifen rather than AIs. I find I tolerate the tamoxifen fine, the ovary suppression less so.
Thankyou for your reply. I’m on fluoxetine and that can affect the efficacy of tamoxifen so I did switch to venlaflaxine but had awful side effects so I’m back on fluoxetine. I may need tamoxifen in a few years but I’ll cross that bridge when I come to it.
It’s weird how your in Scotland & the tests are different to here in England
would you mind sharing your story on the ovary suppression please ??
Yes, it’s just different protocol. They only onco type test early breast cancers with no node involvement, just to determine whether chemo would be beneficial. Lymph invasion means straight to chemo I believe.
I’ve actually come off the ovarian suppression as the side effects were very difficult to manage. However, I felt safe in doing so given I’d been blasted with chemotherapy, I was approaching natural menopause age anyway, and I was still taking the tamoxifen. I’ve not had a period since so I can only assume my oestrogen levels aren’t high. Also have other lifestyle factors in my favour: I don’t drink alcohol and I am a healthy weight which should hopefully reduce my risks further.
I think sometimes you’ve got to try these things out and see how it goes. I was certainly happy to take any treatment they offered me until I felt that the benefits were heavily outweighed by the reduction in my quality of life.
I had prostap injections for ovarian suppression, plus letrozole AI from age 50. I wasn’t menopausal before the breast cancer (although I expect I was peri-menopausal).
I had some joint pain/stiffness, especially in the mornings, for which I took glucosamine with chondroitin. I had some hot flushes for a while but those phased out. Basically menopausal symptoms, but nothing really concerning or life-style changing.
I think everyone is different and definitely some women find it easier and some much harder. Fingers crossed that you will find it all ok.
Have you heard of the organisations ‘menopause and cancer’? You might find it useful - a great podcast. I’m coming to the end of 2 years of targeted therapy with zolodex and letrozole and was perimenopausal before chemo. Crash menopause has been very challenging but the meds really reduce the risk of occurrence for me. So I have found lots of ways to deal with the side effects.
Hi @ginger1 Ribociclib is not a hormone blocker (Zoladex is). Ribociclib is a target therapy. I’m on a similar one, abemacicllib, as well as Zoledronic acid and Exemestane (hormone blocker). I was always keen to throw everything at it. I feel really well. I had side effects with all of them initially, but now settled and my quality of life is great, and SEs are minor. Good luck!
I was 51 when diagnosed and perimenopausal. No node involvement and onco score was 18. No chemo but was advised to have bisphosphonate (Zometa) infusion. Prior to surgery I was also on Exemestane and Zoladex and continued with that, although now I am on Anastrazole and finished Zoladex too as now 53.
Just wanted to let you know the infusions are fine and the tablets are not without side effects e.g gut issues. With the tablets you have to take on an empty stomach and need to be upright for 30 minutes after taking and then need to wait some time before having fluids/food. I have the infusion every 24 weeks and have had 5 of the 6 so far. I did feel a bit rough after the 1st one, like a mild flu/bad cold but was told that might happen. Only lasted a couple of days and no issues for the others.
I finished radiotherapy in December 2023, but then started taking ribociclib in December 2024 as classed as higher risk. The risk relates to number of nodes, size and grade of tumour. I had no nodes involved but was grade 3 tumour.
@bordercat Thanks for your reply. I spent most of yesterday online looking at the different variations and yes although you feel a little iffy for a day or 2 they seem to be more manageable than taking the tablet form. so I think I’ll take the infusions then once settled look at going longer periods if they will allow.
I guess with the other 2 it will be trial and error
I’ve a very similar cancer profile, age, perimenopausal and on a very similar treatment plan to you. Finished radiotherapy about 6 weeks ago. Been on Letrozole for about three weeks, had biphosphate infusion a few weeks back (that did make me feel really rough but only for 3 days), having second zoledex injection next week and starting Ribociclib after Christmas. Obviously very early days, but so far so good no major side effects. There are lots of women really getting on well with such treatments and there does seem options to tweak and change. Really recommend the cancer now speaker session on cancer and menopause. I found it really informative. It set my mind at ease. Gave me options to think about if / when symptoms arise. I now feel more empowered to raise issues but also what I might want from doc’s and nurses to help manage what ever symptoms may emerge, so I can stay the course on this next stage of treatment. I’m embracing big strong lasses online weight lifting sessions (targeted at post breast cancer surgery women), a good early morning walk and more blueberries than you can shake a stick it. All helping centre me and drive on positively. Try and find what works for you and best of luck.
@kat3 Thankyou for your reply & sharing your story. I feel they seem to be dragging their heels as I’ve not heard anything since my appointment on 25th November. I know it’s not even 2 weeks yet but I thought they’d be keen to get the paperwork signed & get me on it. I’ll chase it today as nothing has reached my doctors as yet also. I will try everything offered to me & keep everything crossed Good luck and best wishes on your journey x x
Hello, thanks to everyone for stories of their journey, it always reminds me that there are others going through same as me and I’m not alone through this strange period. I thought I’d share my situation too.
I got diagnosed in October last year and this year I’ve had 3 operations to remove the tumours and very pleased they got the clear margin third time. Between op 2 and 3 I had 8 chemotherapy treatments (ECx4/Px4).
I am waiting to hear back about starting radiotherapy - probably in January. I will be picking up my prescription for letrezole next week and will have first zolatex injection on the 22nd Dec. I will have these for the next 5 years. I was supposed to have my first bisphosphate IV on Tuesday but as I hadn’t had a dental check-up (I was not told it was required) they couldn’t do it and have to wait till I have sign off from dentist. I will also have monthly Abemaciclib injection for the next two years. I’m 47 so peri-menopausal age.
Friends and family think once radiotherapy is done then it’s all over. In my head it’s far from over as will still have monthly visits to hospital for abemaciclib. I am happy they removed the tumour, and I know all the extras are required and are for the best possible outcome, but it’s hard sometimes getting in that mindset .
I’ve been lucky that I had quick recovery, with little discomfort, after operations and managed the chemotherapy quite well too, so just need to stay positive that I manage okay with the rest of treatment as well . It’s seems such a long slog though!
Dr. Tina Peers advised me to take Ivermectin to prevent breast cancer reocurring.
I refused treatment to reduce my natural oestrogen and have gone back in hrt because when I stopped I developed a host if joint problems and had reduced well-being and energy. Read the book Oestrogen Now
Hi there I had stage 2 lobular BC but no lymph node involvement. Plus a short course of radiotherapy. Then AI. I had a predict algorithm some months ago. I’d been in letrozole for 11 months by then and hated it. I felt ill and miserable. My predict score suggested it only offered me 3% advantage so I’m off it now and feel tons better. Just make sure they explain why you’re having any treatment and how it advantages you before accepting it. Ask for a predict score (it’s personal to you). Good luck!
Hi ginger1, I can help with the bone infusion, I had 6 infusions over 3 years, and truthfully I was scared about the things you read about jaw & teeth problems. I went to see my dentist before my 1st treatment and he was so reassuring that he would help me with any future dental problems, he told me that if I needed an extraction it could only be done at the hospital, but that he would see me every 6 months so that he could keep my teeth in good condition with any fillings that I needed, all a but scary but I went ahead with the infusions. I was a bittired after each infusion but that was all and they certainly helped with my aching bones. Hope this helps, sending a big hug, Dolly x
it’s a minefield at times … x
Good luck and best wishes on your journey x x
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