In SE Wales we have a specialist centre called Velindre Cancer Centre/Hospital where oncology and radiotherapy is based. So for chemo, radiotherapy or targeted treatment you are based there. For breast care team, it was originally in the local health board hospital then moved to a specialist breast care centre so surgery, mammograms, ultrasound and MRI’s are all done in one place.
I was HER2+ so needed chemo so have been under the care of both hospitals and seen by a breast surgeon, consultant radiologist and oncologist. As part of my follow up I have a call from the oncology team that can also included radiotherapy consultants or oncologist. They don’t always say what their discipline is, so I usually Google them afterwards, just so I know. They are all part of the multi disciplinary team(MDT) I haven’t seen my breast surgeon since the post surgery check up in July 2023.
When I was first diagnosed in May 2023 the oncology team sometimes visited the local health board hospital to be on hand to talk to patients about chemo or targeted treatment. That was the first place I met an oncologist. Ladies I have met in my local health board that had surgery and radiotherapy have only seen a breast surgeon even if they have travelled to Velindre cancer centre for radiotherapy. Generally here you only see an oncologist for chemo and targeted treatment. I think it’s their way of managing staff and placing a patient under the care of a consultant but we are all part of an MDT.
Yes that makes sense - thank you . I believe I saw a clinical Oncologist and it was the same day just before in fact my radiotherapy planning . @entropy my radiotherapy was a good 60 miles away and I went there due to being on a medical trial as people who live in my area are usually sent to a different centre which is where my friend went . She also travelled back there for her face to face appointments - she got an exceptionally good service I think . However despite the fact that we had surgery in the same hospital both the surgeon she initially saw after diagnosis and the one who operated on her had awful bedside manners ( whereas mine was great ) made her very anxious so I was pleased that she finally got to see a doctor that was nice to her. Xx
I think MDTs function differently according to the trust - I have a consultant for surgery and have seen an oncologist (or her registrar) post surgery to discuss other treatments and also post radiotherapy and have a follow up appt in a couple of months. They have a weekly in person meeting to discuss patients.
Saw this article today - focussed on colon cancer but also mention applicability to BC (alth obvs need for specific trials) - recognises the efficacy of structured and regular exercise compared to drugs (noting toxicity and side effects of drugs).
I had a post follow up a couple of months after radiotherapy but it was just with the BCN who only offered physio if I needed it. At the time I thought I was ok. Possibly could of done with it later on as effects didn’t kick in until 4 months after radiotherapy- cording, breast oedema. Ive dealt with it myself by deep massage and continuing at the gym. Not had cording since March now and this past week the oedema seems a better finally. Think I’ve had a bit more energy lately too. I think level of tiredness increases as radiotherapy symptoms increase and subsides as it improves. I’ve certainly found this, it’s been up and down, but gradually getting there. Radiotherapy finished last August, so its been a long road since I’ve found. The actual treatments were ok. I drove myself, it only took 20 mins luckily.
Hello everyone, Just signposting all to life-aftercancer.co.uk. June online and in person events have just been listed. There are also lots of other online resources on the website. It’s free to sign up to receive notifications. Love Tulip x
Hello. I just wanted to share my story with you in the hope it helps you feel a little better & less alone. I had a single mastectomy following an ER positive reoccurrence. I took anastrazole for 12 months, but stopped for a month break due to painful joints. I have then switched to extemestane. Ive been on them for 8 wks but just stopped as hip pain & sciatica just awful. Throw in low mood & thinning hair & its a bit pants if Im honest! My reoccurrence score is 5%. Ive left a message with my BC team to say Ive stopped AI & am waiting for a call back to discuss. I feel after the surgery, subsequent infection, then a seroma & lymphodema I just want a bit of " normal". I feel I have had enough of this bumpy ride for now. I am grateful for the health I have right now & I know am more fortunate than many others, so I want to enjoy it. Wishing you all the very best with what ever choices you make going forward. Its good to be able to vent & share our experiences here & know we aren’t alone. Sending you a big gentle hug x
Thanks suzie;
I appreciate that so much. Surgeon calling today so I will let you know how it goes however for now ( like you) a bit of normality is being gratefully received. Hugs back to you
I am glad to have found this thread. I made the decision to stop anastrozole this morning after 3 months. Mine was a smx after a 5.8cm lobular with micromets in one node, oncotype of just 4, so yes it might return but not anytime soon. Since taking anastrozole I have no use in either of my arms, the pain in my wrists, shoulders and elbows prevents me from driving and using a computer most days (I run my own business and need to travel and be active) and I can’t sleep with the pain. I finished radiotherapy last week and have a follow up phone appointment with an oncologist about that at the end of August so I assume it’s OK to let them know then? I got a letter about abemaciclib a few weeks ago but assume that’s not happening as I will be 11 weeks post radio on the next call and it will be too late for that, so this has kind of reinforced my decision as I am really more concerned about my bone health than cancer at the moment. I haven’t seen a doctor since my post-op two months ago and don’t know if I am supposed to tell anyone about stopping or the side effects. I have read about the risks of high cholesterol, osteoporosis and don’t know why I was prescribed this drug without ever having my hormone levels (I had an early menopause 20 years ago at 38), bone density or cholesterol checked. I am not interested in maybe buying an extra 10 years if I have to spend the next 20 years in poor health and would take a recurrence of cancer over osteoporosis and life in a wheelchair. I want to travel and enjoy my life not be in constant pain and hating every second of being alive.
Hello @carriel67
I hope the side effects of the hormone therapy start to ease off soon now that you have stopped taking them.
It’s not an easy decision to take but you will see from this thread that you are not alone in thinking that quality is more important than quantity when it comes to life. About 30% of people have to stop taking them, which is a pretty high percentage.
I think it might be wise to give your team a call now to let them know your decision as August is a way off.
Wishing you all the best.
Xx
You should still have access to your BCN as Liason between yourself and your medical team so I would let them know so that they are aware either by phone or email . They may even be able to get you some help for your symptoms particularly if you say that you will go back into them if your symptoms ease ( that doesn’t tie you down to going back on them ). You could also speak to your surgery . There might be a possibility of going onto Tamoxifen which is kinder to the bones but I certainly don’t blame you for stopping as I had similar issues and a history of various MSK problems and osteoporosis in my family. Hope that your symptoms improve - mine did but some things took much longer than others xx
Yes, you are probably right, I was just assuming as noone was asking it’s not a big deal and I could just do my own thing. It’s just that for all the side effects listed on this website, joint pain, insomnia, depression, it just seems the solutions given are to take more drugs, painkillers, sleeping tablets etc. and that seems counter-intuitive when I am sure this would stop if I just stopped taking anastrozole especially after such a short time? I just want to know the reason I was prescribed it in the first place really, my fault, just went along with it as I was desperate to get out of the room. Have just emailed my GP for a referral for a private DEXA anyway (as well as an early menopause, I am quite a tiny person and always have been) as I really would be happier knowing what my baseline score is as I feel it was reckless to prescribe this without knowing that. I was asked about a history of osteoporosis in my family but my grandmother died in her 50s from a smoking related disease and my Mum is not my build at all! I will have a look for details of a BCN, assume these were the ladies that sat with the surgeon at the first couple of appointments? That was at a different hospital to the where the oncologist is so I am not sure they are still my contact?
I think some posters up thread are mistaking this thread for an anti hormone therapy thread - it’s not. It’s to support those who have made an informed decision not to have hormone therapy for whatever reason. I’ve followed it for a while and the more positive posts are very helpful. Thank you for starting it @jayesse
My journey with hormone therapy has some similarities to many others on this thread. I had triple positive BC, but the ER was only 3. I’ve had TCHP chemo/phesgo, mastectomy and a full pathological response post surgery. At the post surgery appointment, the surgeon said “and here’s a prescription for tamoxifen”. I duly started it and within a week was plunged into a familiar world of vestibular migraines. I’ve suffered from VM for about 3 years - Propanolol keeps them under control and I hadn’t had one for about 10 months at that stage (I didn’t even get them through chemo). I was absolutely floored. I couldnt stand up straight, the pain and dizziness was awful. I spoke to the BCNs twice over the course of a the 6 weeks I took tamoxifen and felt like I was being guilt tripped into taking it. Eventually I stopped taking it and arranged an appointment with my oncologist. His words to me were “you can stop taking them, your cancer was HER2+ driven, they won’t be doing much”. I had a brain MRI to check for mets (just incase the migraines were caused by that) but it was clear.
I then had a few months of feeling normal again (while waiting for radiotherapy, that’s another story!) and then I received a phone call from a BCN saying because my brain scan was clear, I needed to go back on tamoxifen. I’m afraid I just exploded. The BCN said they’d support me to take them - my response was that I’d been made to feel guilty about even thinking about stopping them - how would they support me? By fast tracking me to a headache specialist or migraine clinic? No, we can ring you once a month apparently. That is not support.
So I had another meeting with my oncologist whose attitude was again very different from the BCN. Again his words, and I quote “I would be happy with you not taking anything, your cancer was also HER2+ and Phesgo is doing its job and will do for some time”. He also said it would improve my 10 year survival rate by 1-2%. So a max 2% is my benefit. Theres also a recent study for Phesgo (or herceptin) that 12 months of that drug has a 91% 5 year survival rate. I’ve got 3 more injections to get to a full 12 month course.
However I’m 44. I have primary school aged children. The oncologist suggested trying Zoladex & exemestane. So at least I can feel like I’ve given it all a shot. So that’s what I’m doing. I’m a month in and while I haven’t had any migraines, I have had excruciating joint pain, ridiculous all night hot flushes, huge mood swings and I’m incredibly anxious. I can’t seem to make a rational decision. My minor bladder prolapse has got much worse with vaginal atrophy and isn’t being improved by vaginal estrogen. I’m heading for a pessary which I didn’t need before starting hormone therapy. I’m going continue for a least a few months but if its too much then I don’t think a 1-2% benefit is worth the side effects impact on my life. I would love to not have any side effects. I would also love not to have ER+ breast cancer, but I did, so here we are.
You are supposed to have access to a BCN for at least 5 years and this is because you are still on a pathway that includes treatments lasting for years. They are usually the people you meet first so yes they will most likely be based with your Surgeon - or your most local hospital where you started with your diagnosis etc. I’m really sorry that nobody explained about the medication to you or went through your Predict score with you. It might be worth having that information and also about the Abemaciclib before you decide not to continue - you haven’t had the right Information up to now so as it’s quite a big decision to make it would be good for you to get all that. I’m afraid I’m not qualified / have no experience of Abemaciclib so can’t help with any queries about that. If you want to to discuss it with someone and aren’t sure how to contact your BCN I would suggest ringing the Breast Cancer Now Helpline and speaking to one of the BCNs here on 0808 800 6000 Mon - Fri 9am to 4pm Sat 9am to 1pm.
It’s clear that you can’t go on as you have had to do so far though . I was initially told that side effects often improve after 3 months then another BCN said it was after 6 months and then someone else mentioned a year - at that point I was feeling distrustful and not inclined to listen. Some side effects did improve for me but others got worse . Some people have said their side effects improved as late as one year into therapy but it’s often not the case .
Well done for being pro- active about your bone health . When you have had your scan make sure they send the full results . I initially got a letter saying my bone scan was normal and there was no need for me to change medications . About two weeks later more post arrived with detailed results and across the top someone had written - secondary osteoporosis " normal " letter . Secondary osteoporosis is very common after menopause so may be considered normal but to me that didn’t sound normal and it was a factor in me stopping the Anastrozole . As you have had an early menopause I can understand that this would be a big worry for you. Also if you contact a medical professional - Doctor or Nurse make sure you tell them your full medical history don’t assume you get will just get it from your notes ( I was prescribed Tamoxifen and it turned out that I should not have been due to my history. ) Best of luck xx
Hello
I’m on Phesgo too and had jab number 16 of my 18 today.
Thank you for pointing out the recent study for Phesgo stats. That is very encouraging.
I hope things get better for you.
Xx
Hi @carriel67 . I don’t think you can necessarily assume that the abemaciclib would not be of benefit to you. Its a drug to prevennt metastasis and could be important as you’ve had a recurrance. Best to discuss it with your BCN as I’ve not seen anything about a time limit and although hormone treatment has been a nasty experience for you so far, it works entirely differently so may not be as intolerable. I think try these things first, then review if you feel bad on them as, if I have the maths right, you are still only 58 and working. You have a lot of years ahead of you, hopefully disease free.
I do wonder what some BCN’s are thinking. The one that gave me the tamoxifen packet just dismissed my concerns when I enquired about side-effects - lol, my main worry was possible vaginal atrophy and what I could do about it. Little did I know that although I got a host of symptoms, I’m not aware that atrophy was one of them (though it sounds awful). She just had on her a face that said “I expect you won’t be taking these as you are already questioning them”. Probably heard it all before when people stop, they must have since 30% drop out. Seems somewhat defeatist rather than helpful. Some proper advice of symptom management wouldn’t go amiss rather than stating that most people manage it fine and brushing it off.
Regardless, I dutifully started them only 3 days after my surgery results meeting and well before radiotherapy - which is why I knew that how I felt was just caused by tamoxifen and nothing else. The oncologist I spoke to about stopping them due to side effects agreed and thought that zoladex and AI’s would be overdoing it as that treatment decreases cardiovascular protection and my risk is low for recurrance. I was only grade 1, stage 1 however, and 53 at the time ( late menopause, my mum had BC after hitting menopause at 58, its a known risk factor). 54 this month, and finally, my periods are naturally getting further apart this year (instead of closer together previous few years). Hormones, hard to live with, sometimes even harder to be without.
