Hello, Was diagnosed HER2 positive, had surgery to remove the tumour in May, 12 doses paclitaxel and radiotherapy. Was told specifically by oncology that I would receive biphosphates as well (zoledronic acid). Won’t go into details but the whole thing from begining to end has been horrendous - to the point I’ve made a complaint to PALs which is ongoing and I’m having ongoing psychology counselling now to help.
Chased up the zoledronic acid at the unit today - to see why it hadn’t started - had asked before but no answer. Honestly I think they will be giving you a scapel and having to do your own surgery soon! Saw the oncologist yesterday for review - he didn’t say anything then. Anyhows the SACT nurse rang me to say that it wasn’t necessary for me to have as there was no lymph node involvement. I replied that that was always known post surgery and the consultant had clearly written down in all my notes that this was to be given. She rang the doc back and then phoned me back to say that standard treatment plan is to not give zoledronic acid with no lymph node involvement. I explained that - yet again - I have been let down by the team and it adversely affects my mental health. So my question is - is this the standard treatment to not have it? At my radiography review the consultant there said I should have it. I did get an apology from the SACT nurse for upsetting me just before Christmas - well if it had been March 31st I’d still be upset. Honestly I just start to feel mentally better then this happens and I go back to square one again. Should I be asking for a second opinion - I have no faith in any of my team at all and the BCN has been - quite frankly - useless.
Hi katkin1, my breast cancer was also HER2 positive. I didn’t have zoledronic acid. I had 3 rounds of FECT and 3 rounds of docetaxel chemo with 6 months of herceptin injections and 5 rounds of radiotherapy. I had a sentinel lymph node biopsy which showed that it hadn’t spread to the lymph nodes. I’ve got my 5 year mammogram due just after Christmas and so far all has been good. I’m sorry to hear you’ve been having such a difficult time with your treatment team. I’ve no advice on how to escalate things with your team but thought it might be reassuring to hear from someone who was also HER2 positive and didn’t have zoledronic acid. Wishing you all the best with your treatment and hoping you have as merry a Christmas as possible x
I had triple negative breast cancer which can spread quickly. It had spread to my lymph nodes. I am getting zol acid to try and help prevent secondaries in my bones. So it sounds like the oncologist might have told you the wrong thing in the first place? Please try and enjoy Christmas Day and you can get back to sorting it all out in the next few days.
Hi @katkin1
I had bilateral invasive carcinoma at the same time in May 2023, two tumours, one in each breast. The first I found a lump was ER+ HER2+ 20mm the second found during an MRI for sizing, it was ER+ 0.9mm. I had bilateral lumpectomy and sentinel node biopsy, lymph nodes were both clear.
I had 12 weekly Paclitaxel, Herceptin, Letrozole, radiotherapy and zoledronic acid. So yes I had bisphosphonates without lymph node involvement but I did have 2 primary tumours. The Predict tool was used based on the larger of the 2 tumours as it can’t cope with bilateral diagnosis.
It could just be your trust don’t do it, but as they offered it and then decided not, I feel you have a right to know why. The Predict tool has been updated over the last 12 months so maybe that means the risks outweigh the benefits for you. I am aware that you should have a bone scan, I was told I didn’t need one as I was having the treatment through zoledronic acid.
New research came out last year to say that it can prevent cancer in the bones and with a HER2+ diagnosis it can spread or come back in the bones. Therefore bisphosphonates would be good?? I was told by the oncologist that even though I have no lymph node involvement cancer can spread in the blood but hopefully the chemo would deal with that.
It would be interesting to know what they say and why.
I also was HER2+. had paclitaxel, radiotherapy & herceptin… now on letrozole/exemastain for 10 years. All positive with annual mamograms etc. All else I am on is calcichew…
Hi I think bisphosphonates are prescribed for those with estrogen receptor positive tumours who are then prescribed letrozole or other AIs as part of their long term treatment. The bisphosphonate is added because of the long term effect on the bones of taking AIs. Bisphosphonates help strengthen bones and have a small benefit in helping stop recurrence. At least that is what I was told. Perhaps you have not been prescribed them for this reason?
Hello, sorry you’ve had a bad time with your BCN and team, it’s difficult to come back from that and trust them so asking for a second opinion is a good way forward. I am on zoledronic acid infusions every six months and I had no lymph node involvement. I was told that, while it protects the bones from osteoporosis caused by Letrozole, the primary reason for it being prescribed was to try to prevent cancer recurring in my bones.
Proff Coleman at Sheffield Uni told me this : the combined analysis of all randomised trials of bisphosphonates used alongside standard adjuvant chemotherapy and endocrine treatments was published in the Lancet in 2015 by the EBCTCG. In summary, their use prevented 1 in 4 bone recurrences and prevented 1 in 6 deaths at 10 years in women who were postmenopausal when they started treatment.
Our treatment plans are personalised based on so many factors. I don’t know if you are pre or post-menopausal, could that be the reason for not offering it? Anyhow it is definitely not standard treatment plan to not offer zoledronic acid because lymph nodes aren’t involved. The main thing is to query the exact rationale for their decision making and ask for a second opinion if you are not happy with it. I hope you get it sorted.
Thank you so much for replying at what is a really busy time of year, I do appreciate it. And it is interesting to hear your experience. I had got myself into a bit of a state - marginally calmer now Clinic review on Monday then Herceptin on Tuesday. I have major issues accessing the unit now - not that anybody is bothered to do anything about it. And the herceptin gives me tonsillitis like symptoms, haemorrhoids and diarrhoea as side effect - happy days! It’s not that I want the zoledronic acid particularly - more that the oncologist discussed it with me, went through the NHS predictor thingy and then wrote it in the plan - all clearly stated in my clinic letters. So then to turn round and say that I was never going to have it seems a bit bizarre - he was the one who said I would. I said to the SACT nurse who replayed this message to me that it was just another nail in the coffin for them as far as I was concerned. Should the cancer ever come back I would never have treatment at this trust again. Thank you again
Thank you for your reply it’s reassuring to know there are people out there to offer help - it’s much appreciated. I thought letrozole was for ER+ or PR+? Sorry don’t know much about it - I was offered, surgery, chemotherapy with paclitaxel then radiotherapy. But I am post menopausal so maybe that makes a difference? I take ADcal anyway as I badly broke my arm last year and had a bone scan then.
Thank you for your reply - it was most interesting. I’m not on letrozole - I am definitely post-menopausal! I do take Adcal anyway as I badly broke my arm last year and had a bone scan then - although it didn’t show any osteoporosis I guess as the break was sort of unexplained - I just tripped and hit a wall and my arm broke from just above my elbow to nearly my shoulder in a super spiral fracture. Have to say the pain from that was far far worse than anything from the cancer! it’s been a great couple of years!
I did find some information on the Macmillan sit that said it was standard to not offer it with no lymph node involvement - sorry terrible grammar there. So your quote is interesting. It’s not that I particularly want the stuff it’s that , at the conusltation with the oncologist he went through the treatment plan, went through tthe NHS predictor and then agreed to this then wrote it in his plan and clinic letter. So to turn round on Tuesday and tell the SACT nurse to tell me it was never going to happen is a bit bizarre - he was the one who wrote it. And nobody from June till now has ever read those letters and notes and queried it? If it shouldn’t have ever been in the plan why did no one notice this? And if it should why did nobody action it to start weeks ago? Hence my lack of trust in anything anybody associated with that department says. I feel incredibly let down
Hello , thank you so much for taking the time to reply at such a busy time of year, I do appreciate it. I had got myself a bit worked up over things - I had just started to reach a bit of equilibrium and then this and I’m back - mentally - where I was a few months ago. Anyhows, My tumour was found at routine mammogram and was biopsied at 20mm so I was told that the cut of point for chemo presurgery was 20mm - under that surgery would be first then the choice was mine. So as I was bang on the line I chose to have the surgery first - wanted that out as quickly as i could ! By the time of surgery the tumour had grown to 25mm so I was glad it was found when it was.
Off to oncologist who went through the treatment plan, using the nhs predictor and said and planned and wrote that biphosphonates would be given. Now if they’re not necessary all well and good but he clearly wrote this and it has been on all letters since - though I suspect a lot of cutting and pasting goes on! So nobody has queried this - that it shouldn’t be on th e letters as it’s not standard treatment or it should have started but nobody has actioned it. Doesn’t give me any trust in the whole team let alone the oncologist. It did say in my original post op letter that there was no lymph node involvement but I was high risk LVI which I take to be the way it spreads through the blood but again nobody has ever bothered to take the time to explain anything - Dr Google has been my friend here! Don’t know why I woul d be high risk LVI though?
Basically I am bone weary and tired. I shall summon up energy from somewhere and ask questions.
I did go through PALs and met with them on 12th November - I did say I was hoping for local resolution - so an informal complaint. The matron of the unit did phone me on th e15th Nov but I haven’t heard anything since. My trust says a formal complaint is a 25 working day timeline for reply. I will now escalate this to a formal complaint due to this latest debacle with the oncologist.
Thanks again to all -
I was diagnosed with 19mm triple positive IDC in November 2023, Stage 1. The surgeon told me I WOULD need chemotherapy for the best chance of survival (not possibly needing chemotherapy, she was adamant I needed it); this was stated in a letter to myself and my GP in November, and repeated to me at my post op appointment early January 2024.
When I saw the Oncologist at the end of January, she said she was not recommending chemotherapy. Everyone (including family & friends) seemed to think I should just be happy, but it really messed with my mental health as I didn’t know what to believe / who to trust. I had been quite calm but was mentally preparing myself for chemotherapy for 10 weeks, then got told it wasn’t needed & I went to pieces.
The Oncologist is lovely & gave me so much of her time / explained her reasoning etc but also said another Oncologist may decide chemotherapy was needed. I was told I could get a 2nd opinion or decide myself/ if I felt I wanted chemotherapy she would honour my wishes.
The Oncologist was annoyed that the surgeon categorically told me I needed chemotherapy as, in her words, “I don’t tell her how to operate” I didn’t have the energy for a formal complaint but made my feelings known to BC nurses and the Oncologist. Zero feedback / apology from the surgeon!
I don’t think they realise how conflicting recommendations on treatment affect people!
Thanks, that’s really interesting as my surgeon too told me I would need chemotherapy as a must, plus radiotherapy and biphosphonatesdor. When I saw the oncologist he said the chemo was my choice, it would make a percentage difference but I wanted to give myself the best chance now rather than potentially go through it again. But it was the oncologist who wrote the plan, in bold, which has been copied in every single letter since. Then for him to turn round last Monday and say I was never going to have it anyway is, to me, a bit of gaslighting going on.
Not that I’m glad your mental health was shot to pieces over your experience but it’s good to know it’s not just me who feels this way. You’re right I don’t know who to trust. You give your body over to the se professionals who don’t give you the respect you should have. If he’s turned round and said “guidelines have changed…, more risk than vendor…” or whatever is have been happy. But to turn round and shut “I never said that”. It’s a blatant lie to start with and unprofessional at best.
I have now made my informal complaint a formal one. I don’t think it’ll do any good in sure it’ll come back worth “lessons have been learned”. And I’m sure overarching objectives will be squeezed in somewhere! I don’t really have the energy but I feel so damaged metallic I have to do it. I am emphatic that I will not have further treatment, should it be necessary, in this trust.
Thanks for your response, it’s good to not feel alone, however bad the circumstances
I had a similar diagnosis last year. I had surgery followed by Paclitaxel and Herceptin, and then radiotherapy. No lymph node involvement. It was only as I came towards the end of my radiotherapy treatment was anything mentioned about taking Bisphosphonates. I briefly panicked that something had been found meaning I needed more treatment, but it seems like the oncologist just didn’t mention it at first.
I took Ibandronic tablets for five or six weeks before potentially developing one of the rare side effects. I got something like the start of an ear infection. It stopped after I stopped taking the medication. Still don’t know definitely if that was the cause as I am still waiting for an ENT consultation. At my GP appointment they could see any evidence of an ear infection, it also nothing to cause the symptoms I experienced.
When I last spoke to my oncologist he did ask me to try taking the Bisphosphonates again, but also said that the data showed only a 1-2% improvement in the risk of bone cancer if I took them as opposed to not taking them.
Thank you for your reply. My oncologist did definitely mention it, wrote it in bold even and it’s been on all letters since - obviously nobody ever reads them! If it’s not as standard did nobody think to question it? it seems not. When I had the review with the radiotherapy consultant he said to go forward with the biphosphonates “as it’ll give you another 2 - 3%.” He did copy in the oncologist where he did put a note at the end for the oncologist to action. So it also seems there is no joined up working! I’m just perturbed that the oncologist said to the SACT nurse that he didn’t put it in the plan (on his letter from last week) as “She was never going to have it anyway.” Er you wrote in down sunshine. I just don’t trust them - or anything they say.
I was offered this but i had a tooth out so didnt force it. Then when i saw my oncologist and mentioned it she said only about 1% worth having it anyway and not to worry!!! See what your oncologist says xx
I can understand why you feel that way. It seems weird that the oncologist seems to be denying that they ever mentioned prescribing you Bisphosphonates.
Yes it is weird! My formal complaint has now been sent so hopefully someone will have to give an explanation. I have heard that within the nhs here is a reluctance to challenge or whistle blow. Not that this is whistle blowing exactly but it seems that nobody challenges. The bcn say at the initial consultation with the oncologist and presumably said nothing to challenge after, if it’s not done as standard why could she not do it question this? The oncologist didn’t say that the radiologist was mistaken when I saw him. He was more fixed on reading about my recent endoscopy than anything else! Telling me there was no cancer there - well I knew that already. I’ll see. Have psychology next week so she can sort out my head then!
Well done for doing your complaint and good luck with your psychology appointment.
I didn’t really want to make one. But right from the beginning whenever I brought something up ( things haven’t been good from the start). I’ve been asked brightly “ooh do you want to complain?”. I had an appt with the nurse specialist who works with the surgeon. She asked me how I was, I said fine, she said “no how are you” so I told her as I assumed she really wanted to know. After a bit she said “if you don’t stop talking we’ll run out of time, that’s not what you’re here for. Do you want to complain” Well no I didn’t and don’t but it seems that that’s the only way to go forward. So 13 pages of colour coded script has now landed. I did meet with Pals in November and went for a local resolution but as I’ve heard nothing (also a tad annoying) and after the oncologist appt last week I’ve upped it to a formal complaint. But I don’t understand why it has to come to this.
Psychology lady is helpful.