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Refusing treatment!

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Member

Re: Refusing treatment!

Oh dear, I am sorry to hear that.  I found myself incredibly bitter after radiation, as I watched the breast worsen, but I didn't get infected.  A good thing, as I'd had the mother of all infections beforehand.  What made me angry, too, was the ringing of the bell when the last rad was done, when I knew it wasn't over.  It's almost a year now, since I finished rads so maybe I should go back and ring it now.  It does get better, Sarah.  At the moment you have a lot to deal with, but maybe it's the last of it.  I hope you get better soon.

Cathy

Member

Re: Refusing treatment!

I had 20 sessions 15 to the breast and 5 booster, it did burn my skin considerablySmiley Sad even with the moisturiser abs drinking gallons of water. I’m 6 weeks post radiotherapy and have developed a very nasty infection in my boob. Bright red skin and considerably swollen, the BC nurse and my GP said it was from The radiotherapy even after 6 weeks. I’ve been fine and it just came on all of a sudden, fingers crossed it settles down.
Member

Re: Refusing treatment!

Yellow, I don't feel like running - hiding in bed under the covers seems a much better option!  I think I'm probably going to have to bite the bullet as I can't see me managing the hormone replacement therapy and there's obviously only a certain amount of treatment you can refuse without encountering problems.

 

I'm planning on going back to the surgeon on Monday and asking to be referred to one of the other centres because, at present, the current Radiologist and team (see my thread) seem to be more of a problem than part of the solution. Hopefully I might have more confidence in a different team.

 

Good luck with your choice.

Member

Re: Refusing treatment!

Hi Cathy,

at this moment all I wish to do is run and run!!

i have never run from anything but this takes the biscuit!

reading your reply has helped thank u.

will inform all of u my decision next week,

thank t u all.

yellow.

Member

Re: Refusing treatment!

Yellow,

Nobody can actually tell you what's right, including the cancer team.  All they can do is offer what they think is the best for you, and statistics are what help them to do this.  So your 6mm falls into that place where they advise radiation for your type of cancer.  Statistically, however, there will be people who had less than 5mm and the cancer returned, there will be people who had radiation and the cancer returned. 

I was one of those who struggled with the radiation, and do feel side effects.  It could be that my attitude is what makes me feel them - I don't believe nobody has side effects, just that they have a different attitude.  I did have the radiation in the end and I am glad I did, as the fear of it returning gets worse as time goes by.  For me, that is.  This doesn't mean I'm not pissed off about it, just that I've accepted that it was a necessary evil.

I think whatever your decision you need to go into it understanding that side effects might be the lesser of two evils.

Cathy

Member

Re: Refusing treatment!

Many thanks to u all for replying to my queries,

 

it is encouraging to hear positive answers.

i didn’t wish to take standard procedure,one size doesn’t fit all.

i will take a lot of time mulling thinks over the weekend.

Thanks again.

yellow xx

Community Champion

Re: Refusing treatment!

Hi Kathy,
TBH, as the others have said, I really did not find rads a problem & no after effects that I’m aware of.
From reading the forum over the last couple of years, most who join the monthly threads, get through it all ok & I’m not aware of it being more of a problem, than any other of the bc treatments & usually it’s less so.
Glad to feel you can share your worries here, it’s what the forum’s for.
ann x
Community Champion

Re: Refusing treatment!

I can see where you are coming from Kathy. But I've just had a thought about the long term potential issues: We know that all treatments, including radiotherapy, have come a long way in recent years, and treatments are being refined more and more. It may be that the long terms health issues arising from rads that people have reported were to do with higher and less targeted doses in past years/decades, but that as things are more sophisticated now, those of us who are feeling fine may well go on being so due to better application of the rads. However, it's never easy making such important decisions so good luck with it all, and whatever you decide will be what is right for you. x

Member

Re: Refusing treatment!

I'm in the position of trying to decide this as well, a slightly more complicated situation as I live in France. (I've posted about my problems on another thread). I think the thing that worries many of us is the possibility of delayed side effects, either soon after treatment ends or well into the future.

 

I was fortunate in finding my first lot of chemo (EC) quite doable (although I had problems with the Taxol and actually missed the last dose) but it was good to know that I could've stopped if things had been too difficult - I haven't come across people who had unpleasant things happen to them in the weeks/months/years after chemo in the way you hear of with radiotherapy. That means that, when you read people's positive experiences (which I'm sure is true of the majority) I tend to think "so far" in many cases.

 

Apologies for sounding negative, just trying to put some of my worries across.

Community Champion

Re: Refusing treatment!

Yellow

 

I am echoing Jobey and Optimissy, I had 20 session, 15 regular and 5 boosters, I didnt have any problems other than the pain of going to and from the hospital every day for 5 weeks which was a real pain.  My skin went a bit pink but settled down quickly, I drank plenty of fluid, moisturised 2/3 times a day and rested when I felt fatigued.  Mine was very small and caught early, my oncologist said it was belts and braces and I was happy to go with his advise.

 

Helena xxx

Community Champion

Re: Refusing treatment!

Hi Yellow1

just echoing Jobey. I had 15 radiotherapy sessions and was afraid it wasn't working as I had no burning or itching or anything, and kept fatigue at bay by drinking gallons of water, having a walk daily and an afternoon nap. Have also been on the Anastrozole for 20 months now and so far so good. No sign of any long-term health issues from the rads either. It is natural that people use forums for advice when things are not going so well for them, but there are far more people who are not posting, or even on the forum, who just have their treatment with no problems  and get on with their lives because they haven't had side effects, so it's a bit skewed really. Your choice, but it certainly isn't anything to be feared- just jolly boring flogging up to the hospital daily. x

Community Champion

Re: Refusing treatment!

Hi Yellow, I did have radiotheraphy, 15 sessions also and just wanted to say i had no issues at all, it rarely causes any major side effects and other than a bit of a pink boob by the end I had nothing that bothered me.

 

It is a world away from Chemo and although I completely respect your right to choose whatever you do just in case you were worried it was a harsh treatment on the wholeit really isn't Xx Jo 

Member

Re: Refusing treatment!

Hi everyone,

i have lobular carcinoma.lobular carcinoma insihi grade 2 her2 protein negative.horme sensitive,nodes negative.

tissue sent away for Oncotype come back 5 out of 100.

up to 5mm radiotherapy is not necessary mine is 6mm.

oncologist would like me to have 15 sessions,I am thinking is this really necessary for one more mm?

plus to take Anastrozole.

my thinking is it kills off healthy cells to,is it a case of burnt or scalded?

side effects don’t always show till after treatments, is quality of life more important .

Anybody out there refused radiotherapy?

would be very grateful for any advise.

go back next week to give my decisions.

many thanks,

yellow.

Spoiler
 
Member

Re: Refusing treatment!

Hi everyone,

i have lobular carcinoma.lobular carcinoma insihi grade 2 her2 protein negative.horme sensitive,nodes negative.

tissue sent away for Oncotype come back 5 out of 100.

up to 5mm radiotherapy is not necessary mine is 6mm.

oncologist would like me to have 15 sessions,I am thinking is this really necessary for one more mm?

plus to take Anastrozole.

my thinking is it kills off healthy cells to,is it a case of burnt or scalded?

side effects don’t always show till after treatments, is quality of life more important .

Anybody out there refused radiotherapy?

would be very grateful for any advise.

go back next week to give my decisions.

many thanks,

yellow.

Member

Re: Refusing treatment!

Hi Cathy,

sorry I didn’t make myself clear when I was replying to you.

my head is like a whirl at the moment all the waiting we have to do for appointments an results I find very frustrating.

thanks yellow.

Member

Re: Refusing treatment!

Yellow1, I'm not sure who you are asking, but here's my answer anyway.

No, I didn't have a mastectomy.  I had a lumpectomy and then a massive infection, so I started the rads late and only had 15.

I am as fit as the side effects from the Letrozole will allow.  I went off it for 2 months, and I've been back on for about another two months.  The second time around is not half as bad as the first, probably because I'm in a different headspace. 

Because of the infection in the breast I am very tender on that breast, but that is apparently not normal.

Cathy

Member

Re: Refusing treatment!

I found that very informative thank you.

did you also have a mastectomy how many sessions did you have .?

i will ask the oncologist lots of questions.

are you fit and well now?

 

Yellow1

Member

Re: Refusing treatment!

My nodes are clear breast tissue clear.

some tissue send away for Oncotype testing waiting for results plus a date to see the oncologist.

i first was fast tracked in 2014 then again 2016 I had this lump quite big.didnt show up on mamagram or untra sound therefore I was told it was part of me. Nobody listens!! 

Recalled this August they found 6cm on the other side of the lump it was there on the 2016 imagine of mamagram I am so angry. 

Had mri. Scan showed up on that,lump was 24 mm!!

Not sure about having radiotherapy but will listen to the oncologist.

3weeks since mastectomy feeling sore but getting there,

Member

Re: Refusing treatment!

Hi yellow1,

Sorry to hear about the cancer.

I'm not familiar with lobular cancer, as I had ductal.  And I was vehemently against radiation, but went through with it in the end.  It seems that radiation reduces the risk of recurrence by 50%, although I only found that out afterwards.  Do you have node involvement?  I thought they didn't do radiation after a mastectomy, so maybe there are circumstances around your cancer that make it necessary.

 

My own side effects from radiation - well, it's hard to tell what to blame for what, but nearly a year later the skin below my breast is still compromised, the ribs hurt sometimes, and I am short of breath quite often.  However, I have extremely sensitive skin and refused to use creams during radiation because of that.  I have had asthma since the 90's, and so that may contribute too.  

 

It all happens so quickly and we have to make decisions so fast.  Knowing what I know now, I probably would still have had the radiation, with the same amount of kicking and screaming I had before, but maybe with a little less psychological turmoil.

 

I hope that helps.

 

Cathy

Community Champion

Re: Refusing treatment!

Hi Yellow1

I hope you are recovering well after the mastectomy. Another hurdle passed.

I had 15 sessions of rads to the left side without the breath-holding technique that some hospitals do, (mine didn't do it) and obviously i was aware of the slight chance of damage to the heart, but I figured that I wanted to give myself the best chance of not having a recurrence. I was also informed that the rads beams go sort of across the chest area, not "through" it. I am also aware that with any treatment, meds, surgery or whatever, they have to tell you the risks, however rare, so people have as much information as possible to make a decision. What we have to do is do a sort of cost/benefit analysis, and for me the priority was knocking any remaining little cancer sods on the head. Also the rads techniques are improving all the time so that any damage to heart or lungs is minimal or non-existent.

I had no side effects - skin was fine and I moisturised in accordance with instructions and drank a lot of water. 20 months on and heart and lungs are as good as they ever were as far as I can tell.

Before making a decision  maybe have a good talk with your oncologist or breast care nurse and ask about the true likelihood of damage after rads. The same applies if your cancer is oestrogen positive - you will probably be  prescribed a daily hormone tablet. Not everyone gets side effects from this and again, it's another tool in the toolbox to avoid getting it again. Good luck with whatever comes next. x

Member

Re: Refusing treatment!

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,

 Yellow1

Member

Re: Refusing treatment!

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.
Member

Re: Refusing treatment!

I too refused chemo because I could have terrible SEs and the cancer could still return
Member

Re: Refusing treatment!

I took Letrozole but stopped after a month as awful SE's. I agree that we are having to make choices all the time when we are under great duress and I'm double guessing/ thinking about RADS after starting this week- expected to have 15 sessions. Already my breast feels odd, pains indirectly around ribs and sternum. PREDICT calculator gives 3% more chance of being alive, I wonder if the stress of it all versus the benefits eat that 3% improvement up!…so difficult to PREDICT as they say…its very personal.
Member

Re: Refusing treatment!

hi, pleased to hear you are sure about your decision, I've now started to wonder why bother?My left breast was affected and I'm doing the breath holding at each session to protect my heart…I've been worried about this and how it will affect me long term and if it's worth it in the long run. i'm 60 now and enjoy an active life. I was even offered chemo! but declined as I told my Consultant that if the disease comes back I would need chemo any way, so why put myself through that?!
Member

Re: Refusing treatment!

I had invasive bc stage 1 grade 3 tumour sized 16mm, was given letrozole meds which I took for a month and stopped after awful Se's including feeling suicidal. I'm now on day 4 of rads and feel very toxic and stressed already tbh. I think I'm really sensitive, but wondering if I need to continue. i'm aged 60, diagnosed 5 months ago, and had lumpectomy no nodes involved and clear margins after 2nd op. I feel as if I've had enough of it all!
Member

Re: Refusing treatment!

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
Member

Re: Refusing treatment!

Hi geranium

 

Thats very positive thankyou, fingers crossed so far so good.

Member

Re: Refusing treatment!

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.

Member

Re: Refusing treatment!

Hi Debbie

 

have taken Tamoxiden for last 3 years and no side effects.   Take every morning at the same time.  Periods completely stopped but have bled a couple of times in between and always ensure I get this checked out asap.  My sister was on Tamoxifen for 9 years with no side effects.  

Member

Re: Refusing treatment!

Debbie, I'm curious as to why you were prescribed letrozole if you were premenopausal.  Did they assume you were post?

Member

Re: Refusing treatment!

Hi pecan,

 

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.

 

Debbie

Member

Re: Refusing treatment!

Hi pecan,

 

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.

 

Debbie

Member

Re: Refusing treatment!

Hello Ladies. 

 
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
Member

Re: Refusing treatment!

Hi Minimad (I think I must be maximad),

I presume your nodes were clear?

Keep me updated.  I have to decide by Thursday, but at the moment I'm thinking of doing rads but rejecting hormones.

Member

Re: Refusing treatment!

Hi Pecan,

not in the same situation as you but i had triple negative breadt cancer diagnosed in Feb this year.

had surgery in march to remove 2 areas, one positive for cancer, the other looked suspicious so removed anyway.  Also 3 lymph nodes taken.

when i went for the final results, was told that margins where all clear.  Was originally told that chemo would def not be needed but at this appt. they wanted me to have 6 chemo sessions followed by 15 radiotherapies.

i refused the chemotherapy,  didnt feel that there were enough pluses and to many negatives...

so i said NO to chemo but did do the 15 radios, which i finished mid June.

i have my 3 month checkup next week and i need to know that the pains, twinges and tenderness are all part of the recovery process.  Fingers crossed.

hope this may help you but we are all different and handle situations differently.

good luck with your decision.  I will look out for your reply. ☺️

Member

Re: Refusing treatment!

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.

 

Cathy

Member

Re: Refusing treatment!

Hi 

 

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 

Member

Re: Refusing treatment!

Hi Jeannie.

 

I'm so glad to hear you've been able to make a decision that you're happy with, and I'm glad to hear you had such good support from your Oncologist and Breast Care Nurse - so unlike my own experience!

 

I'm hoping when someone else comes looking for answers, our posts can maybe point them to some of the latest research.

 

Wishing you all good health

Jane

Member

Re: Refusing treatment!

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

Member

Re: Refusing treatment!

Thank you. Will look them up

JeannieC
Member

Re: Refusing treatment!

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

Member

Re: Refusing treatment!

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?

Member

Re: Refusing treatment!

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

 

 

 

 

Member

Re: Refusing treatment!

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.

Member

Re: Refusing treatment!

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

Member

Re: Refusing treatment!

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 luckSmiley Happy
Community Champion

Re: Refusing treatment!

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




Community Champion

Re: Refusing treatment!

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

Member

Re: Refusing treatment!

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