Not wishing to upset anyone, but I could really do with some advice as I’m in a real quandry as to what to do. I realise we are all different as are the cancers.
Has anyone decided to forego either radiotherapy or tamoxifen - or even both of them?
My lovely surgeon has recommended tamoxifen and radiotherapy. So here is my dilemma…. When my surgeon put my details in to NHS Predict (I am 65), the advantages of tamoxifen was 3.5% less chance of reoccurring compared with 7% without tamoxifen, therefore a benefit of 3.5% overall with tamoxifen.
Similarly the advantages of radiotherapy was 1% chance of reoccurring compared with 4% without radiotherapy, and therefore a benefit of 3% overall with radiotherapy
My 8mm cancer was found in a scan of my left breast. After biopsy it was found to be stage 1, grade 1, slow growing, ER positive and HER2 negative. I had a lumpectomy and SNB. My margins were found to be clear and also the nodes were clear, so cause for big relief.
If the cancer had been higher grade, larger and faster growing and spread then it would be a different story, I wouldn’t need to ask about this as the percentages would likely be higher for having tamoxifen and radiotherapy.
My worries are about all the long term side affects, particularly surrounding radiotherapy, compared with the fairly low reoccurrence percentage decrease that I would receive from radiotherapy with tamoxifen. I’m not sure the risks outweigh the benefits, in my particular case is it a case of a sledgehammer to crack a nut!
I would love to hear if anyone else has had this dilema with low percetages?
Hi there - I had the exact same dilemma back in May. I’m 58 & a 0.7 lump was discovered at screening. I had lump removed with clear margins & no lymph node involvement. I was then told that I would need 15 sessions of Radiotherapy + 5 years on Tamoxifen. More or less accepted that but when I met with Oncologist & she explained 1-2% chance of recurrence with Rads + 4-6% without. Doesn’t really seem that much of a difference to my unmedical mind. She also said that it was very unlikely that the cancer would bother me again. She gave me 2 weeks to think about it & said come back with your decision or any further questions. To cut a long story shorter - I went back 2 weeks later and declined the offer of Radiotherapy. To me, 15 sessions seemed rather excessive - if it had been 4 or 5, I might have considered it. One size does not fit all, I think. Oncologist said she would write to my surgeon re my decision and that she was happy about it & advised me to take the Tamoxifen for 5 years which I am quite happy?? to do.
I really think that you have to do your own research + speak again to your Oncologist. Maybe then you can come to a decision that you’ll be happy with. Whatever you decide, I wish you all the best + take care, Carol x
I had a 4mm grade 1 tubular cancer , clear margins and nodes, advised was highly unlikely to reacure but they recommended 15 seasons of Radiotheraphy and 5 years of tamoxifen as highly ER + , I gladly took it all as I wanted to know I’d given myself the very best chance of it never coming back, Tamoxifen also helps against another ER receptive cancer developing , I’m 18 months on now with no ill effects and fine on the tablets, I was 46 on diagnosis and want to be here when I’m 96!! I totally respect everyone’s decisions but refusing treatment wasn’t an option for me Xx
Ladies I was not in such a fortunate (sounds odd in the context of having cancer at all, but hopefully you know what I mean) position as many of you & got the short straw with a grade 3, HER+ve tumour, which they threw the book at treatment wise. My instinct on radiotherapy was to run a mile, but I ignored my intuition & forced myself to get on that table. I still feel that I did the wrong thing & wish I had not had it, despite not burning or really having much of a reaction to it at the time. You must make up your own minds, obviously, but I think in the eye of the storm we are like rabbits in the headlights not knowing what to do for the best. I had spent the whole time focusing on getting through chemo & didn’t really think about the radio until the weekend before. I wish I had spent more time researching it & thinking calmly. Good luck with your deliberations. xx
Hi, thought I would just add my situation to this conversation, I had 18mm mixed grade carcinoma, lumpectomy clear surgical margins, two nodes removed negative and HER2 negative. Part of my biopsy was then sent off for the Oncotype DX test (which is now available if you are node negative) and came back at 24 which was intermediate risk of recurrence over next 5/10 years I think, so having course of chemo upped your percentage of cancer no recurring to 92% from 88% in my case using the NHS predict etc, for life expectancy including getting run over by a bus or anything else happening. So it was a massive decision my consultant could not advise me either way because I was in the middle, the MDT couldnt advise either which was not the best, so I decided to go for chemo, I had one session on 13 August, which knocked me sideways, I caught virus, high temperature, and to cap it all started to lose my hair within 10 days. I decided enough was enough and stopped chemo, and having spoken to two consultants, and pharmacy consultant they happy with decision, and that having one session will have helped eradicate if there is anything else lurking, I am now awaiting having radiotherapy, but I am now worried about this having read the books and googled, I thought this was what everyone should have, I am going to have 20 sessions, and then be on Anastrozole hormone replacement for the next 5 or may be 10 years, it is interesting that we do get varied advice across the country I will definitely do some more research, but I must put my faith in the consultants, or should I ? I do want what is best for me. D
I find this all so hard, and I don’t want women who are new to the forum reading and getting scared about their treatment choices, but how on earth can we ever be sure what is right for us with regard to treatment?
The trouble is we are kind of taking a stab in the dark about what is right for us, at a time when we are at our most emotionally vulnerable, and desperate for someone in authority and an expert to ‘cure us’ and offer us the best advice.
I had my surgery, and didn’t really think twice about radiotherapy, but now am having the most hideous problems with tamoxifen. I don’t think I would change having had radiotherapy, but I’m certainly not happy with how I feel physically right now…an enlarged breast and quite severe pain in the surgery site which started after RT. The breast doesn’t feel like ‘part of me’ anymore, it just doesn’t, and I can’t explain it. Has the RT potentially killed any loose cancer cells ?..I won’t ever know…and herein is the problem. We have treatment which we hope has a certain effect, but we have no evidence either way, and so all we actually feel is the negative impacts of the treatment. There are no guarantees to any of it. It’s not like treating diabetes, where you feel better with it under control and it improves your life quality.
Hindsight is a marvellous thing, and as Bibi said we might not make the same choices regarding treatment if we knew some of things we know now, or have had reactions that we had not thought we could get. If I’d have known that 6 weeks on tamoxifen would have made me so ill and given, what is now turning out to be, a significant hormone imbalance I would not have taken it. However, we come into this completely uneducated about the diagnosis we receive, and it is only through time that we learn things that could have helped us make choices at the start.
Where am I going with this ?..I’m not sure right now myself lol well, I think I am saying that you can only make the choices you can at any given time with the knowledge you have at that point in time. You can only make the ones that are psychologically right for you. I’m not talking physically here, because the outcome of that is unknown as we have established , so it is what rests easy with you as a person. There is no place for regrets, you just have to know you did was was right for you at the time. You are the one who has to live with your body and mind and it is your life. X
I had an er+7mm grade 2 invasive bc (at 55), to be honest, I was happy to go with whatever was recommended. I would have found it more difficult, emotionally, to deal with any future recurrence, if I hadn’t.
Following rads in May, my breast now feels back to normal & I’ve been fine on tamox, so I feel grateful for where I am now.
I do have the option of anastrazole, but have decided against this as tamox works for me at the mo.
Good luck with your decision, Angel, it has to be right for you.
I can’t help but comment having finished radiotherapy a month ago after clear margin WLE & no lymph node involvement for an 8mm tubular, grade 1, ER+ HER neg tumour. I’m 54 and was diagnosed following routine screening. There’s masses of research on radiotherapy for breast cancer and more being done including treating just the tumour bed for low grade, early tumours. The results are astounding with mortality rates from breast cancer falling year on year. None of us ever wanted to be in this position and none of us are experts although we are experts in ourselves as people. We may have similar tumours but that’s where the similarity ends: we each have different opinions on what we as individuals want in terms of treatment. Had I been 74 then I probably wouldn’t have had radiotherapy. Not because I had any dreadful side effects but because I’m not sure it would add anything significant to my life expectancy. I’m taking Tamoxifen and not struggling with any side effects (I’m in the majority who don’t suffer side effects who tend to stay quiet as we’ve nothing to say!). For me the risks of not having treatment far outweighed the minuscule risks of having treatment. This probably hasn’t helped you make a decision but I wanted you to hear from someone else who hasn’t had any problems or side effects and is back to living a normal life - albeit one where I have to remember to take one tablet a day - that’s my biggest struggle! Whatever you decide to do will be right for you just as what I did was right for me. Good luck:)
Thank you all for your lovely supportive replies and well wishes.
Carol, please feel free to rabbit on anytime! What you’ve said has really helped me. I’m sure no one will take offence as we are all just trying to find out what is best for us and support each other through this horrible illness.
Bibi44 thank you for your kind words, I know just what you mean and indeed have felt like a rabbit in the headlights for some time now! These are difficult things for us to talk about and it’s very difficult when we only have limited medical knowledge, however it’s such a comfort to be able to talk to others and get their viewpoints.
Dedscoops, thank you for the info about the Oncotype DX test, I didn’t realise this was available for node negative and I will speak to my surgeon about it. It’s certainly not easy to access the information that we desperately need. I hope all goes well for you whatever you decide.
Charys, I completely agree with you and would not want anyone to be scared as a result of any posting. I went for the planning stage of the radiotherapy and to be honest it was a doddle, and I wasn’t worried about the actual radiotherapy. My issues were with the small percentage gains compared with the risks, which in the end is a personal thing as our circumstances are all so different. Thanks for sharing your experiences about Tamoxifen, and I hope you start to feel better soon. As for what I shall decide - I like the way you put it when you said ‘You can only make the ones that are psychologically right for you’.
Ann-M, Thanks for your reply. I am delighted all hear all has gone so well for you, it’s so good to hear it when treatment is successful.
JayG, thank you, it’s good to hear the other side of the story. I think the more information and sharing we can have, the better we can make our (fairly) informed personal decisions regarding our care and what we are happy with in ourselves.
And thank you all again for you well wishes and support.
Hi I am trying to make the same difficult decision as Angel. I had a 10mm tumour Grade 2. No node involvement. ER positive. I am also 65. Had lumpectomy. On tamoxifen. My Oncologist said at my age it was up to me to decide if I wanted radiotherapy Don’t know what to do.
I am new to the forum and looking for advice on radiotherapy treatment for high grade DCIS.
My my journey to date -15 years ago at the age of 35 I was diagnosed with wide spread DCIS in my left breast - I opted for bilateral mastectomy with breast reconstruction at the time and no other treatment was required as it did not involve any lymph nodes.
15 years on I found a very small nodule on my left breast , that I firmly believe has been there a long time , possible for 15 years ,however my implants had ruptured and I had to have them removed and new ones placed , at the same time the surgeon removed the small grain of rice nodule , this was tested and results came back as DCIS again !! The chances of recurrence I was told was very rare - the surgeon then removed at least 2 mm clear margins however my breast surgeon suggested as a precaution to have 3 weeks of radiotherapy . On speaking with the oncologist she gave me the pros and cons of radiotherapy . I am not sure if the benefits out way the risks for me at this stage . Has anyone else refused radiotherapy for DCIS ? I know all cases are different but I was hoping someone on here may be able to give me some advice. Thank you Gail
I have just discovered this thread, and am also one who would like to refuse treatment. I was wondering if any of the ladies who HAVE refused treatment are still on the forum, and willing to give us any updates? Regrest? Recurrences?
In my case my tumour was 27mm, grade 3, no node involvement. I had a lumpectomy followed by a massive infection. I have several weeks before I have to make the final decision regarding Rads, but will have to decide on Letrozole this week. I am also questioning the treatment of having hormone treatment when one is recently post menopause.
Firstly, my apologies to Gail - Panslass. It’s almost a year since I’ve signed in and somehow I missed your post. I’m so sorry to hear the cancer had returned. By now you will have decided what was best for you and I hope you were able to make a decision that you were happy with. I hope things went well for you.
Hi Cathy & Mini Mad. I’m sorry that you find yourselves here, however, the support of others going through similar things is invaluable.
Just to give you a quick update. I had a follow up Mammogram in August and all is well. Reading the information from the Prime 2 study gave me the confidence to decline radiotherapy, I have no regrets about that decision.
I did not want to go on Tamoxifen so was prescribes Astrizole, in fact I tried all the 'zoles going! I had a bad stomach with all of them which really affected my lifestyle - couldn’t go far from a toilet! sorry TMI. Eventually my breast care nurse said have a break from it all as the percentage of protection was not that high in my case.
It has taken almost a year for me to feel like the ‘old me’. One thing that has really helped me is switching to a whole food, plant based, oil free diet - see Dr John McDougall The Starch Solution. I have also lost about a stone in weight on this way of eating! Again I want to emphasise that this an individual decision. Hope this helps you. xxxx
I took letsrozole along with zoledex, when i was first diagnosed in may, yes i had few aches and pains, but it was very doable, i have now been switched to tamoxifen, im 53 and and still pre menopausal, im 16 days in, and i cant say ive noticed any changes in my body yet, apart from a heavy period, but im assuming thats because the zoledex has now stopped working and my overies have kicked back in. I dont perticulary want to take it, but i was high er positive, so for me i just think of it as a saftey net.
All the best pecan.
I would be interested to hear from any other ladies on tamoxofin, how long were you taking it before you noticed any side effects.
I took letrozole along with zoledex, when i was first diagnosed in may, yes i had few aches and pains, but it was very doable, i have now been switched to tamoxifen, im 53 and and still pre menopausal, im 16 days in, and i cant say ive noticed any changes in my body yet, apart from a heavy period, but im assuming thats because the zoledex has now stopped working and my overies have kicked back in. I dont perticulary want to take it, but i was high er positive, so for me i just think of it as a saftey net.
All the best pecan.
I would be interested to hear from any other ladies on tamoxofin, how long were you taking it before you noticed any side effects.
Hi pecan, i was prescribed it because i deferred my op due to a holiday booked when i was diagnosed, and they didnt want me flying on tamoxofen, as it can cause blood clots, it was a safer option, and maintained it while i was away.
I wouldn’t go for either if in your situation
The % benefit to your life compared to what the Radiotherapy and drugs will do fir you I would not do it
I had the same dilemma when deciding a bout Chemo and refused it .
I am having Radiotherapy but had no intention of taking the hormone blocking drugs due to the side effects and my pre existing long term medical conditions
I looked at the % and my quality of life I believe will be better without
I researched it and spoke to 5 women who had Breast cancer it was a well informed decision.
Good luck with your decision
I am sticking to mine whatever anyone says
I too refused chemo because I could have terrible SEs and the cancer could still return
I would hope the oncologist would always have offered you a choice, but indicated his/her preference, with reasons. I think SOME health professionals in oncology assume everyone will want every treatment - after all some women are completely freaked by the diagnosis, even if their tumour has a good prognosis. I imagine, that priorities vary according to age and stage of family life. If I’d been 20 years younger, with dependent children, I’d have considered treatment options differently (but on the other hand, as main breadwinner, I would have had to think about sick leave, the mortgage not yet paid off, and the machinations of my employer (NHS) to sack me “legally”, without pension; I’ve seen it so often!
“I’ve found HRT withdrawal (in a heatwave) so unpleasant that I will refuse letrozole. I said as much to the oncologist before starting RT, but she doesn’t seem to have taken it in. At 66, I am more concerned about the drug increasing the risks of all the things we die of in my family, before I reach the end of 5 years. “Cancer is not the only disease!” I have always joked that my family don’t need to worry about Alzheimer’s, because we never live that long (exaggeration, and some folk get it early) but not everyone inherits the genes for long life - even if the current trend in public health/NHS insinuates “bad behaviour” (aka “lifestyle”) is the only deadly sin. Not being posh enough to have a lifestyle, but just a life, I refuse to be intimidated.
Most people make the best choices for their cancer treatment in the light of knowledge at that time; and NO point in beating yourself up later, if things don’t turn out as expected.
Hi, I’m new to this!
3 weeks ago I had my left breast removed. Waiting to receive a date for Radiotherapy,after reading the info I am terrified of the side effects it can cause especially to the heart. I am thinking is it worth it.?
i have invasive lobular carcinoma lobular carcinoma insihe Grade2 hormone sensitive.
Any advice would be very welcome,