Hello
Does anyone know if there are any support groups/websites out there specifically for people who have either had to stop hormone therapy or have decided they don’t want it and are moving forward without it?
Any suggestions gratefully appreciated!
Thank you
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Hi @jayesse
We don’t have specific groups for this at Breast Cancer Now, although other forum members may know of groups elsewhere. However, we can match you with someone who’s had an experience like yours to talk things through. Many people find this very helpful. You can find out more about Someone Like Me and register your interest here: Someone Like Me phone support | Breast Cancer Now.
Have you spoken to one of our breast care nurses before? They’re here to answer clinical questions or to chat things through. You can get in touch with them here on the forum on the Ask our Nurses your questions board or on our helpline 0808 800 6000 which is open Monday to Friday 9am-4pm and 9am-1pm Saturday.
Sending our warmest,
Lucy
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Thank you so much. I will definitely have a look at Someone Like Me
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Hey !
I stopped targeted hormone therapy and chemo tabs. I going with palliative care only. My symptoms are pain and fatigue. I can only do a small thing every day like going the supermarket and then lm laid up.
Don’t want side effects from anything. Finding it hard to cope as life goes on and l feel like screaming in the middle of town .
I’m sending happy thoughts and prayers.
Xx
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I stopped tamoxifen due to a host of side effects, combined with a low benefit anyway. I wiuld think you might need more support when on it rather than off it as I feel tonnes better without it. If the support is for fear of recurance due to knowing you are not on it, then any group related to fear of recurance could work. Its a fear we all share regardless of treatment. There are people who take everything offered and still get a recurance unfortunately, it happens.
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Due to being low risk and having other health conditions plus very unpleasant side effects I decided to stop after a few months as the potential benefit was very low in my particular case . My Surgeon and the BCNs I have talked it through with have been supportive otherwise the only support I’ve had has been on here but it’s a hotly contested subject that people feel very strongly about.
I’m in a couple of support of groups but feel like an imposter because a lot of time is spent talking about / letting off steam / giving advice on how to manage the side effects of hormone therapy .
I’ve had some rather flat puzzled reactions which is understandable but it means that the answer is no and I’m not aware of any but would be interested to know if there are any out there . Xx
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I’m so sorry you are going through this. I hope you are getting the support you need. If I find anything useful I will share it on this thread.
Sending a hug. X
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Those are very wise words, thank you. I’ve been so focused on fear of recurrence because I’ve stopped the hormones that I’d overlooked the fact that people who take them can still get it too. It’s a bit of a lottery either way.
I’m trying everything I can to stay as fit, mentally and physically, as possible. I’ve found the help available from the Penny Brohn centre amazing. I’ve just done an online breathing to de-stress session and it was amazing. Well worth looking at their website if, like me, you haven’t heard of them till now. So much help there. My oncologist told me about them 2 weeks ago. I wish I’d known about them from last May when I got my diagnosis!
Big hug to you x
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I’ll keep you posted if I find any specific help re not taking the hormone suppressors. I’ve just mentioned Penny Brohn to another person in here. Have a look at their website - amazing help available.
Big hug x
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Thank you so much for your helpful suggestions.
I will follow them up x
By the way, when I first got diagnosed I was told I would ‘only’ need surgery and radiotherapy. Then after MRI I was told I would need chemotherapy and surgery but unlikely to need radiotherapy. Then some cells were found in one lymph node and they sold the radiotherapy as being a belt and braces extra to be on the safe side. No mention of hormone therapy until after my surgery and again the surgeon implied that this was another extra precaution benefit.
When I went to see my oncologist I said that as the hormone therapy was only a belt and braces benefit I had doubts about whether I wanted to try another type due to the side effects I had when I tried it. She replied saying that the hormone therapy is the most important part of treatment! If so, why was I given different perspective from my surgeon?
I have to say I personally don’t like the way they only tell you what treatment you need in a piecemeal fashion. It’s harder to get your head round and I’d rather have been told everything I was likely to need from the outset and then been happy if perhaps it turned out I didn’t need it.
I’m interested to know what all of you think about this. What were you told about hormone therapy and when? And how do you feel about the piecemeal approach if you have had the same experience.
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I was told I would need Radiotherapy, hormone therapy initially following my lumpectomy (25mm tumour). Then it changed to chemotherapy, radiotherapy, hormone therapy and Ribociclib (the latter being a cancer growth inhibitor). I was about to start chemotherapy on the 17th March but pulled out last minute when I found out at my pre-assessment on 13th March that Herceptin had been added, without my consent, to the list of chemo drugs. I just totally lost it, lost confidence, especially as I was afraid of having chemo in the first place before hearing about another drug added to list.
I like my Oncologist who is warm hearted (she is Italian) and she kindly cancelled my chemo sessions, explaining that the Herceptin inclusion was a mistake. Well it might have been a costly mistake for me since I am not sure that it was really needed.
I have Grade 3 IDC, Stage 2, but my Oncotype DX test result came back at 29, so above 26 for a post menopausal female. The Oncotype DX test also came back as progesterone negative which suggests a poorer prognosis and the oncologist advised to have 12 weeks of Paclitaxel, then Epirubicin-Cyclophosphamide (EC) if tolerated, followed by Radiotherapy + Letrozole + Ribociclib for Grade 3 and high risk by genomic score.
It has all been a bit of a shock which is why I haven’t been on this site. At the moment I want to walk away from everything. They also found perineural invasion.
I attach a link about Letrozole which might be of interest. I am seeing the Radiotherapy Oncologist on 2nd May
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I went to the Bristol Cancer Help Centre (Penny Brohn centre) in early 1990 after my first cancer was diagnosed (metastatic melanoma). I had a poor prognosis but I survived.
They recommended hair, skin analysis tests for vitamin/mineral deficiencies and saw I was deficient in many, namely zinc, magnesium, selenium, Vit C, B Complex and Vitamin D. I started taking good quality supplements and exercising. What a powerful cocktail.
My GP managed to get these prescribed under our NHS and after 5 years of survival and doing well I was found to be in excellent health and my surgery often rang me to ask which specific supplements I take to help other patients.
I like being in control and taking the natural route to wellness. I know it doesn’t suit everyone but I have absolutely no fear about my cancer, providing I can stay in control. I believe in the necessity of the surgery part, but I am not so sure about the rest. I think I will go ahead with radiotherapy, but I am not sure about anything else.
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Thank you so much. I’m sorry you’ve had such a rotten time. Will you accept the chemo now ?
I haven’t heard much about ribociclib. Is it new?
Wishing you all the best and sending you a hug x
No I have pulled out and I cannot go back on Chemotherapy. Ribociclib is not yet approved for general NHS distribution, but my Oncologist said she will probably be able to prescribe on the NHS by May time. Ribociclib is available privately. I think if it was available today, she would have given it to me. All treatments are so unpalatable. If only we didn’t get these horrible side effects.
I think the truth is that our doctors don’t always know at the start of our cancer journey, how things will go, what more will be discovered along the way to change the treatment plan. This has been the case for me. One test result may lead to a new treatment plan.
Thank you so much for your hugs. I hope for the best for you too jayesse
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Yes I also don’t like this feeding of information in a controlled way but I had already experienced that with another health problem. I think they think you’re only ready to know either when they want to tell you or if you ask - but if you don’t know what to ask about then you can end up blindsided or feeling that I formation has been withheld. So I wanted to know about everything . I remember them telling me I didn’t need to know about the radiotherapy at the diagnosis stage but I told them I did want to know and asked what else there would be and they told me about the hormone treatment as well . At the time it felt like the hormone treatment was in the distance somewhere and the least of my worries but as things progressed I realised that for me it might be the most arduous part of my plan .
It’s quite possible that the Oncologist and Surgeon will have different perspectives on the treatment and have different ideas about what constitutes the most important part of the treatment because their roles are di different. Xx
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Hi @jayesse, Perhaps this thread can become a support group? I am happy to join in. Stopped Letrozole after 11 months despite being prescribed it for 10 years as I was declared as High Risk although Oncologist unable to define that term. Reason for stopping was side effects and the high stress accompanying these. Initially I stopped for a break of 6 weeks to see health impact and evaluate. Extended that break as needed more time to research, consult and decide. Consulted BCN nurses, Macmillan nurses, local cancer support group, my Endocrinologist, friend in Pharmaceuticals, Friend who is cancer doctor in Manchester, Endobiogenic doctor, Gynaecologist. Only one person wouldn’t engage with me - the Oncologist! Researched options and stats/ different dosing options, SEs of alternative drugs. Recalled the recent death of friend from breast cancer which was truly awful. Was teetering on edge of a decision when I got results of Pelvic MRI. This showed that my fibroids had grown on Letrozole (a treatment usually used for shrinking them) and that I had developed Endometriosis and an Ovarian cyst. This was the decider for me - it was doing me more harm than good. What am I doing now to reduce my risk of recurrence - Regular strength and stamina classes with Penny Brohn online to strengthen my bones (have Osteopenia), Core exercises to strengthen my core (have Scoliosis), Healthy eating (anti-inflammatory diet after doing class with Penny Brohn), Regular outside activities to up my Vit D (walking/gardening), Relaxation, Mindfulness, Yoga nidra to reduce my stress all helping to boost my immune system, attending for annual mammograms and US both sides at my request (had single mastectomy), Consulted an Endobiogenic practitoner at local health shop and had private blood test - now taking herbal meds to balance my hormones, Changed to an insulin pump to get better control of my Type 1 diabetes, Pushed for referral to London Sleep Clinic (AI induced chronic insomnia) and practising sleep restriction to improve sleep. Helping others/volunteering to keep my focus elsewhere (started a lunch club for cancer patients, volunteered for Someone Like Me, support neighbours and friends, organising a fundraising concert for local cancer centre.) Stopped looking at BCN forum (this is an exception!) to take my focus away from breast cancer every day. Watched the excellent BCN podcast on fear. Booking holidays and days out and generally enjoying life.
Love Tulip x
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Hello @Tulip29
Your post is very informative and very inspirational. Thank you.
Can I ask how long ago you stopped taking the hormone blockers?
I am like you but at the beginning stages of putting together an action plan/lifestyle makeover so that I live well. I’ve started by incorporating exercise and relaxation into my routine. I’m doing chair aerobics, tai chi and from next week plan to do yoga as well.
Yesterday I did an amazing breathing to de-stress session with penny brohn online and I’ve booked up to do more with them including a retreat in November.
Diet is more tricky but maybe I’ll get some help from penny brohn there too.
I find it easier to make the adjustments step by step as try and do it all at once and it becomes overwhelming.
Ironically, if I can make the changes I will probably be fitter with cancer than I ever was before it, albeit that the treatment has left me with various side effects that now need to monitored and managed. That seems to be the general trade off we all have to accept in one way or another. And don’t get me started on the mental health impact and lack of understanding and support! It’s another reason I didn’t want to have the AIs - just the thought of being so low on them (as they made me when I tried them) and having to keep trying to get my treatment team to at least acknowledge it was enough to make me anxious. As far as I am concerned, once my Phesgo jabs are done I really hope I wont have to go to the cancer centre very often.
Sending you a hug and thank you for your insight. X
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That’s amazing @Tulip29 and thank you for the information - I’m sorry that you were left with so many problems from taking Letrozole and about the friend you lost as well.
I really need to work on my diet and lose weight . However I do cold water swimming which I swear helps my immune system and my mood. I do different Yoga classes up to 3 times a week including an outdoor class .
Over Christmas and New Year I wasn’t able to swim and some of my Yoga classes were not running and I came down with a nasty winter bug and I think if I’d been able to keep up the swimming I might not have caught it - aside from having COVID in the Summer of 2023 after going to a festival I had not had a bug for 2 years whereas I could 2 or 3 a year before I started the swimming.
I am post menopausal but I’ve had a bit of a show a couple of times after eating a lot of soy products especially soy milk. I was told that this could not be related to soy but I remembered that as I was going into the menopause I started drinking soy milk and that seemed to bring on a bit of a bleed so although I don’t avoid soy completely I’m careful with my intake .
I drink alcohol very rarely and usually only in small amounts.
I also attend a mindfulness class when I can and do a little bit of mindfulness at home when I can .
I take Magnesium and Turmeric as a shot and when I remember . I’m careful about the supplements take and have given up some of the ones I was taking before breast cancer that contained or were a concentrated source of Vitamin E or bovine collagen .
I’m 3 years clear and counting 
. I do worry about recurrence but not excessively - just now and then usually before my annual mammogram . Xx
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@Tulip29 I think it’s a good idea that this thread can become a support for no hormone therapy, maybe it will take off like the HER2+ and need some buddies @jayesse? If I see anyone else commenting I will sign post here.
I personally stopped Letrozole for 6 weeks and felt so much better, less fatigue, hot flushes and aches and pains. I have started on Exemestane as I have two cancer at the same time and want to keep trying. I talked to my menopause consultant and we discussed the Predict score and quality of life. She speaks to many women who struggle on hormone therapy.
I’m so pleased you are both benefiting from Penny Brohn, I was there the other day doing Nordic Walking and back tomorrow for Sound Sanctuary as they are increasing their in person activities. I’m lucky to be within a 30 minute drive. I will be passing on your praises to the team tomorrow. Their online activities are brilliant as allow those across the U.K. to access it. I love the yoga and Tai Chi. I tried Strength and stamina but I can’t always attend at that time.
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