Refusing treatment!

[angelrainbow]

Thanks Jas58. Both books look interesting - the more information we can have to help us make difficult decisions the better. x

[JeannieC]

Thank you. Will look them up

JeannieC

[JeannieC]

Hi Angel

Thank you for the links.

I had a talk with the breastcare nurse today who made me feel much better about my reluctance to have radiotherapy. She agreed that in my circumstances it was reasonable to do without it.She also pointed out that the Oncologist would not have offered me the choice if he felt that not having radiotherapy was a very high risk strategy.

I too have looked at the latest research including the Prime ll study. I know that I will have a slightly higher risk of recurrence without radiotherapy, but I feel that when you balance that against the potential problems of radiotherapy for me, it is a risk I am willing to except. The breastcare nurse also reminded me that although the recurrence risk might be higher the mortality rate was largely the same whither you had radiotherapy or not.

Like you I want to emphasise that avoiding radiotherapy is not the correct route for everyone as there clearly are benefits but in my circumstances I feel this is my way forward. 

Angel thank you for your support. It is a help to know I am not the only one to reach this decision.

Good luck to everyone on this journey

JeannieC

[Jas58]

There is an excellent book by an Australian Breast Oncology expert John Boyages called DCIS - Taking Control. An Australian friend who has been through a DCIS diagnosis recommended it. He has also written Breast Cancer - Taking Control. I found it invaluable in helping me come to terms with my own diagnosis and understanding the way forward. Might be helpful?

[angelrainbow]

Hi Jeannie.

I had a talk with one Oncologist who was very adamant that the only alternative to not having radiotherapy was a mastectomy, however, I was very unhappy with her and asked to see another Oncologist. Before I met with with second Oncologist I did a lot of research and found many scholarly articles to support not having radiotherapy. One in particular was the 'Prime II' Study. I was so relieved when second Oncologist quoted the study to me and said in my circumstances the decision not to have radiotherapy was a reasonable one.

I totally realise that this is not the situation for everyone, and in some respects I feel 'lucky' although that is always a strange way to describe things!

Anyway, here are the links:

http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(14)71221-5/abstract

http://www.breastcancer.org/research-news/some-treated-w-hormonal-tx-may-not-need-rads

http://jco.ascopubs.org/content/early/2015/05/08/JCO.2014.57.7999?cmpid=jco_pap_11May2015

http://publicationslist.org/data/piero.sismondi/ref-242/Ann.Surg%20Onc-2013-RT%2055-75.pdf

I hope that this helps you to make a decision that is right for you. I think all we can do is share as much information as we can with each other so that we can all make the right individual decisions for ourselves. Do let us know what you decide. xx

[JeannieC]

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.

[angelrainbow]

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.

Jane xx

[JayG]

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:)

[ann-m]

hi all,
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.
ann x

[Charys]

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

[debscoops]

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 

[Bibi44]

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

[lorac170]

Jane,

I always thought that it was a bit odd that diagnosis like us - ie clear margins & no node involvement were treated the same as mastectomy + chemotherapy (radiotherapy wise). Felt a bit of a fraud as, hopefully, we are rather fortunate if you see what I mean. My Oncologist was lovely & great at explaining everything. When I said that I thought 15 was rather excessive - she said that it used to be 25!!. There are ongoing studies about reducing sessions but nothing concrete as yet. Mine was on my left side also which concerned me greatly re future problems re heart & lungs. P!us, met a lovely elderly lady in the waiting room one day at my pre op assessment who was there for her annual mammogram. She had told no one about her diagnosis until her treatment was finished & then said that her son - who is a scientist & sees everything in back and white - was absolutely livid re the Radiotherapy. He said that there are no proven benefits to Radiotherapy whatsoever. When I decided to decline mine, my husband said that he would support me 100% whatever I decided but he was so pleased that I decided not to have it. He thinks ( me also) that in 30 or 40 years time - "they" will say who thought that was a good idea?

I'm sorry that I've rabbited on a bit & I'm also sorry if anyone has taken offence at my stance. Obviously tho, if I had needed mastectomy etc then I would have had a different view but, fortunately, I didn't and so one size doesn't fit all xxx wishing you all the best whatever you decide x

[angelrainbow]

Hi Carol. Well, I'm so glad I'm not the only one! I feel the same as you about the low percentage benefit. Your Oncologist sounds lovely and helpful, I only wish mine had been even a little bit like that. My Oncologist said the improvemnet would be 50%, I thought wow, amazing, until my husband pointed out that meant that it was half of 6% ie the 4-6% that you were also quoted, if you see what I mean. She said the only alternative was a mastectomy. When I finally plucked up the courage to say I wanted to put a hold on things until I had thought it through she said I would need to speak to my surgeon about arranging a mastectomy! Ho hum. I'm doing loads of research and so far I still think I will pass on the radiotherapy, but still haven't decided about the tamoxifen yet. xx

Jane

[angelrainbow]

Hi Jobey, thanks for replying. I absolutely agree with you and respect everyones individual decision and it's true, refusing treatment isn't necessarily the way to go for everyone. If I had been a lot younger then I think my 'Predict' score would have been a lot different, and if my cancer had been a higher grade, and spread etc then I would have grasped everything with both hands. My difficulty is with the small margin of benfit that treatment would bring. I'm so glad that you didn't have any ill effects and the tablets are suiting you. xx

Jane

[Jobey68]

Hi, 

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 

[lorac170]

Angelrainbow,

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

[angelrainbow]

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?