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Is refusing Rads a good idea?

23 REPLIES 23
poemsgalore
Member

Re: Is refusing Rads a good idea?

Ansolutely Linda, Unfortunately at my hospital the pathologists don't put what percentage of your affected nodes contain cancer. I think that the medics feel they are losing control over your treatment if they tell you too much!!

Best Wishes
Kath xxx
Guest user
Not applicable

Re: Is refusing Rads a good idea?

Hi Poems

I am glad your decision has gone well.
I was in a similar position in that I have had blood pressure issues and am having Herceptin that puts me at risk of heart failure. In my situation I was told the decision was mine alone and on asking was told there was no evidence rads would help as I had clear margins and no nodes involved so it was not a hard decision to make. I know it has slightly increased my risk of local recurrence but if that does happen I figured I still have that in the armoury - and believe me if it comes back I will use it!

Hope it all goes well!

Kahren
Lola65
Member

Re: Is refusing Rads a good idea?

Hi Poems,

Looks like they are looking after your welfare Kath. You will feel so much better now your decision is made, and you can always change your mind or have the ANC. I have always said the medics filter out too much information they should be telling us at the start, which is why having the path lab reports was so important to me.

Hugs, Linda xxx
poemsgalore
Member

Re: Is refusing Rads a good idea?

I had a very interesting chat with my consultant oncologist, the one in charge of rads. She told me quite a few things about my tumour that I didn't know. 36mm, grade 3, which I knew, 100% ER positive and 70% PR positive (I didn't know the percentage). She also said there was less than 20% chance of local recurrence in my chest and about 50% chance under my armpit. She added that she wouldn't agree to me having rads until she had spoken to my respiritory consultant or my RA consultant and was more concerned about rads causing fibrosis of the lungs than anything else. She also said I could have an ANC instead. With all the info I now have, I've decided no rads which would be 5 weeks, and not 3 as I was first told, just go for the Anastrazole for now and worry about whether to have an ANC if I feel it necessary at a later stage.
Oh yes, I also have vascular invasion which I hope the chemo is getting rid of!! So, job done as far as I'm concerned. Many thanks for your comments and information - it helped me a lot. And good luck to everyone wherever you are in your journey

PG xxx
preston_girl
Member

Re: Is refusing Rads a good idea?

Hi Poemsgalore
I'm three years on from very similar diagnosis to you except I had 3.5cm tumour.
I haven't had rads but did have mx and chemo.
I'm also taking tamoxifen for 5 years
At the time there was a trial called supremo trial and I decided to go on that. Its to determine whether people who have under 4 nodes involved are being over treated by having both chemo and rads. 50% of people on the trial have rads and 50% don't and I'm in the 50 that hasn't.
Three years on there is no sign of the cancer coming back.
It was a hard decision to make to go on the trial and not have rads especially as I was only 41 at the time with young children.
Not sure if this is any help but I suppose what I'm trying to say is that you could be being over treated if you have rads as well as chemo and if its not going to make much difference to your prognosis then why go ahead.
Talk the options over with your oncologist and family.
I'm glad now I made the decision not to have rads because I went on to have a reconstruction and having rads could have made a difference in the outcome of that
Chris x
Lozzarooney1
Member

Re: Is refusing Rads a good idea?

Good luck PG - hope you're able to come to a decision that you're 'happy' with.
Hugs Lozza xx
MarthasSOS
Member

Re: Is refusing Rads a good idea?

Hey PG

I just wanted to drop by and say good luck for today - I hope all goes well.

Take care and my thoughts are with you today
Martha xx
Nipinuk
Member

Re: Is refusing Rads a good idea?

Poems,
all the best tomorrow. A few of us Marchies are having that dilemma and we don't have pre-existing conditions like you. Linda's given wonderful advice and I will certainly bear that in mind when onc brings up rads in the very near future.
you're so not a wuzz! I really don't want rads n will find out if really necessary. I wouldn't have thought that you'd need ANC although I've read of quite a few ladies who had it with one node positive.
My tumour is 14mm with one out of two nodes positive.
big huggies xx
poemsgalore
Member

Re: Is refusing Rads a good idea?

Well it's not only the side effects that are a concern Pammyx, there are other things to take into consideration that I don't want to go into here, but thank you for your suggestion.
pg
Pammyx
Member

Re: Is refusing Rads a good idea?

Just a suggestion can they vary the amount of rads they give giving a minimal dose would surely have less side effects?
poemsgalore
Member

Re: Is refusing Rads a good idea?

Caz, I was interested in your comment about both your and your mums tumour being close to chest wall. Mine was at the bottom of my breast but quite free from chest wall. I'd assumed they wanted me to have rads to reduce the risk of any cancer cells being in the skin flap that was folded over and glued into place after breast tissue and lump were removed. But I think this flap would have been the upper part of breast and not the lower part. That's something to look into.
Tracyld, I can understand perfectly your reasons for not wanting rads, and I feel the same about chemo zapping all rogue cells. I was put on Fec-T, but only managed one Tax, so am now back on Fec. Another thing I have to find out, is what percentage of my one and only affected node was affected, as I really don't fancy ANC either. I am such a wuzz. Seeing radiographer tomorrow, will let you know what happens.
Thank you PG xxx
tracyld
Member

Re: Is refusing Rads a good idea?

Morning Poems and Gill,
I chose not to have rads. I too had various reasons for not wanting the therapy as my ribs are in the wrong place due to scoliosis ( curvature of the spine ) having twisted my ribs as a child. I had a spinal fusion at 14. Anyway I was scared of my ribs cracking and so I did much research about the benefits and what % chance I had if I decided to be brave and not have it.
I made the decision based on the fact that I could not have rads on that side again. I only had 2 lymph nodes involved and I considered it to be a belt and braces exercise which I did not really need. I made my decision when a Registrar was on duty so the next week I had a phone call from my Oncologist to check if I had given the right answer. She did not ry to change my mind she just respected my decision.
Please do what you think is right for you both. My mx was July 2010 and I had FEC T Chemo so felt that had zapped all the rogue cancer cells along with a full axillary node clearance.
Take good care of yourselves and let us know what you decide. Love and hugs Tracy xxx
Gill_567
Member

Re: Is refusing Rads a good idea?

Dear Poems,

I had the debate (at some length) with oncologist re. chemo. It was definitely needed and recommended. I just didn't want it and didn't think I'd get through it on my own. I will also have a similar discussion with them when the time comes re. radiotherapy. I agree with the others that it has to be your decision and one that you are comfortable with. So bombard them with questions - no holding back! You might also want to consider discussing the implications with your other consultants (apologies if you already have). They surely will have come across a similar scenario before.

All best wishes for Tuesday,

Gill
Guest user
Not applicable

Re: Is refusing Rads a good idea?

Hi poems for me personally i am throwing the book at it ,but i fully understand your concerns .
my mum had mastectomy ,no chemo needed but he advised rads as her tumour like mine was near the chest wall and he wanted to "stabilize the whole area"I hope that when you speak to the radiologist he is able to help you make an informed choice lots of love cazxx
Pammyx
Member

Re: Is refusing Rads a good idea?

I have opted for the supremo trial which is a trial looking at radiotherapy after masectomy, I have been selected to receive radiotherapy even though I am in the low risk category. It is my right side that is affected so less risk to the heart and I am assuming I will receive the lowest dose. It may be worth asking about the risks entailed in the different levels of dose, in terms of making a decision.
Morwenna
Member

Re: Is refusing Rads a good idea?

It's completely a case of weighing up risks and benefits. From my discussion I decided that the risks of my cancer recurring outweighed the risks of the treatments.

I did ask about possible damage to the heart, lung or ribs, and my radiologist told me that it was unlikely, but possibly could affect a superficial part of the lung just below the area irradiated. The plan is to use some kind of artificial "tissue" pillow over the chest wall that will allow the radiation to build up there on the outside of my chest wall, and so concentrate it more superficially.

The reason I asked about when they said it was up to you was that if they had prefaced by saying "you don't really need this but it could help", is a bit different from saying "this is the treatment we advise in your situation"!

Anyway, yes, you know your own situation, so go have that discussion and good luck with making a measured decision. xxx
poemsgalore
Member

Re: Is refusing Rads a good idea?

Bless you Lola, you are like a mummy to us all - and boy, don't we need one right now. xxxx
Lola65
Member

Re: Is refusing Rads a good idea?

Good luck on Tuesday with your radiographer. You know already to write down all your questions, and not to leave until you have all the answers. If I were you I would ask him first what the benefits are, and what increases there might be to your chances. Then tell him of your concerns, and ask what the chances are of aggravating your existing problems. Then ask for his honest opinion. At the end of the day the decision is entirely yours, but make sure you have all the facts before you make that decision. I know this has been worrying you for some time, and that can't be helping with your chemo recovery. Hopefully you will have all the facts on Tuesday. Thinking of you. xxxxxx
poemsgalore
Member

Re: Is refusing Rads a good idea?

Thanks for your comments. Lola, I wasn't given any information as to benefits, but I am seeing the radiographer on Tuesday. Morwenna, as I hadn't even mentioned rads before, it was definitely AFTER i'd expressed reservations. Jenanne, until I've seen radiographer I won't know anything, but ours is the best breast cancer treatment centre in our area so will probably have the latest types. There are other problems for me, which I don't really want to go into here. I just thought that with only 1 node affected and having had mx too, I might be able to get away without it.
PG xx
Guest user
Not applicable

Re: Is refusing Rads a good idea?

Kath, I'll be starting 3 weeks of rads on Monday and I understand your concerns. I think about scarring of lung tissue, etc., but treatment today is targeted to try and avoid damage to healthy tissue as much as possible. I am more concerned with getting rid of any cancer cells that may remain in the chest area after surgery/chemo. I am grade 3, HER2+, so don't want to risk local recurrence or possibility of mets. So I'm having the radiotherapy, which I see as an essential part of my treatment. Perhaps it's possible for you to go to a hospital where they have the latest types of radiotherapy, which don't affect healthy cells, considering you have lung issues? Re. heart problems, the risks are there, but low.
Jen.
Morwenna
Member

Re: Is refusing Rads a good idea?

Did they say "It's up to you" before or after you voiced reservations?

I will be having rads too, but it didn't seem to be presented as much of an "optional extra" when I was told. I did voice reservations regarding irradiation of the axilla, as I am frightened of lymphedema, but the radiation oncologist did explain that it was advisable to proceed, without going into actual stats, and personally I know I have a high risk of recurrence, and should this happen I want to be assured that I had taken all steps available to prevent it.
swanie
Member

Re: Is refusing Rads a good idea?

Hi Poems
It is always tricky having to make these decisions. If you have doubts, and they seem very reasonable to me it is worth asking your onc about the gains as Lola suggests.
I am very much of the mind set of looking at pain vs. gain and going from there.
Good luck with it all - you have come through the worst.
Jacqui

Lola65
Member

Re: Is refusing Rads a good idea?

Hi Poems,

On what grounds does your onco recommend rads and what extra chances of survival does he give you?
poemsgalore
Member

Is refusing Rads a good idea?

My tumour was Ductal Invasive, 3cm, Grade 3, with one affected node. I've had mx and chemo, but don't want rads. Oncologist advises me too, but says it's entirely up to me. I want to refuse, Mainly because of Bronchiectasis with psudomonas colonies on lungs, RA, Sjogren's syndrome and op was on left side. I understand rads can leave you with a slightly higher risk of heart disease later in life. I'm 62 and will be going on Anastrazole after chemo finishes next month. Any comments?

poemsgalore