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Member
Posts: 324
Registered: ‎21-07-2017

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
Posts: 2
Registered: ‎22-11-2018

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
Posts: 43
Registered: ‎15-11-2018

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
Posts: 8
Registered: ‎30-10-2018

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
Posts: 324
Registered: ‎21-07-2017

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
Posts: 8
Registered: ‎30-10-2018

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
Posts: 3,107
Registered: ‎17-03-2016

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
Posts: 788
Registered: ‎03-02-2017

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
Posts: 43
Registered: ‎15-11-2018

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
Posts: 9,663
Registered: ‎16-11-2016

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
Posts: 788
Registered: ‎03-02-2017

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
Posts: 3,071
Registered: ‎08-03-2015

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
Posts: 8
Registered: ‎30-10-2018

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.

Warning! Emotional content
 
Member
Posts: 8
Registered: ‎30-10-2018

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
Posts: 8
Registered: ‎30-10-2018

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
Posts: 324
Registered: ‎21-07-2017

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
Posts: 8
Registered: ‎30-10-2018

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
Posts: 8
Registered: ‎30-10-2018

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
Posts: 324
Registered: ‎21-07-2017

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
Posts: 788
Registered: ‎03-02-2017

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