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criteria for radiotherapy after MX

17 REPLIES 17
millykins01
Member

Re: criteria for radiotherapy after MX

Hi
Just to say had meeting with doc on weds & I am having RADS. He felt it would be beneficial as I am so close to criteria so just waiting for the dates now. wish I hadn't had the stress of the uncertainty when there was no need. they seem to forget how scared & vulnerable you feel when they discuss things that to them are just everyday. the need to remember how significant everything they say is to us I think
thanks to everyone who commented
XXX jo XXXX

summer11
Member

Re: criteria for radiotherapy after MX

hI Millykins - I was told from beginning chemo and rads as my age means i can cope with it. I had 3 ops ending in MX. grade 2,23mm ic, her neg, rest positive. MX clear margins and contained in same quadrant but dcis and lobular changing cells. i have always gone with their advice from the begining and my drs have not changed their advice that rads is belt and braces. I will also have tamoxifen for 5 years.

millykins01
Member

Re: criteria for radiotherapy after MX

Hi
I have learnt the hard way that things can change quite a lot from initial DX & that they generally don't make decisions about what will happen until you have completed each step of the process. Initial DX, suregery or chemo first, WLE or MX,chemoand or RADS - it canall chnage as you go along & that is what is one of the harder things to deal with - more uncertainty & waiting. I also know that is why it is so valuable to have someone else in meetings as sometimes things are mentioned but we don't take it in or hear it as we have so much going through our minds at the same time.

I have decided if I don't get a letter Monday I am calling to see what is going on as I also don't trust things to happen automatically from their end even when they say so and so will happen - again have found this out the hard way you DO have to take a great deal of responsibility for yourself & your own treatment - which isn't easy to do
XXX jo XXXXXXXXXX

justlikeaduck
Member

Re: criteria for radiotherapy after MX

Hi Pinkrose

Thanks for the advise. I am not having immediate reconstruction my OH has just come home from work and he has been very positive as he said the BCN nurse did say a couple days ago that there could be a possiblity of radiotherapy it will depend on how near the chest wall the tumour is when they operate. Guess it just seems more definate when you see it in print that the Breast Surgeon thinks it likely.

This web site is so fab theres always someone out there who has been through the same. Need to find my positive mojo again.

Luv
XX just like a duck XX

pinkrose
Member

Re: criteria for radiotherapy after MX

Hi the exact same thing happened to me after having a mx and immediate recon and being told I didn't need rads then I got a letter saying 'radiotherapy pros and cons to be discussed'. I went into a flat spin and have spent a week agonising over whether to have them or not. I asked to see my onc to go through all my questions and I have decided to go ahead despite my surgeon recommending that I don't. I wish my onc had warned me beforehand, I have just finished chemo and thought I was done with treatment.

Ring your bcn and tell her what has been said in your letter, (you never know it may even be a big typo mistake !!!!) and she will be able to talk to you about rads. it's not nice receiving news like this in a letter is it?

justlikeaduck
Member

Re: criteria for radiotherapy after MX

Hi everyone,

I am due for MX on 4th May and thought I was adjusting as well as could be after meeting with BCN on Wed. Just this minute the postman has arrived with a copy of the letter the hospital sent to my GP and I feel like I have gone backwards three weeks. To quote his comments are " I think there is a reasonable likelihood of her receiving chest wall radiotherapy"

Any comments or words of encouragement would be greatly received as this has really hit me.

luv
XX just like a duck XX

xxchrisx
Member

Re: criteria for radiotherapy after MX

Jo you are so right to trust your instincts. I went against mine when I had choice of wle or mx. I was leaning towards mx but listened to others asking why I would do this if I didn't have to. I ended up having to have a mx anyway so could have saved myself an operation I didn't need if I'd have trusted my instincts.
My instincts told me to go on the trial and I'm hoping in the long run I made right choice.
Sometimes I wish they would just tell you what to do it would make life so much easier.
Good Luck with the rads
Chris xx

pinkrose
Member

Re: criteria for radiotherapy after MX

Hi Millykins

AFter much deliberation my gut instinct is to go ahead with RADs, even though I'm 1 node affected, 4mm grade 3, DCIS and 2cm grade 2. It's been a really difficult decision to make and I wish I'd been told this may happen beforehand. The 2cm grade 2 cancer (a mucinous cancer) was found after I had my MX (this didn't show up on anything - MRI, US, mammogram). So I want to chuck everything at it, just in case there is anything that dare still be lurking around!

Good luck with your decision - remember it's your decision at the end of the day. I've not spoken to anyone apart from my OH about this because I wanted to make the decision on my own. It's easy for other people to say 'do it' when they don't understand the results of our tests.

Rachel.x

millykins01
Member

Re: criteria for radiotherapy after MX

Thanks Chris - I totally agree that without trials we wouldn't have the data we now do to more effectively treat BC. If I had 1 node or a smaller lump I would probably be more inclined to consider the trial. That is also a benefit being monitored for longer I agree. What is swaying me is that my ONC said there is already some evidence to lower the criteria from existing data but supremo will confirm or refute this I assume. I am also aware that margins play a part in the decicion & am sure if it was felt to be of benefit it is offered but as you say there is a risk to the treatment too. It's just another decision to be made but I am sure with the right info I will make it Ok & as I say my gut instinct is for RADS anyway

xxchrisx
Member

Re: criteria for radiotherapy after MX

Hi millykins
I am on the supremo trial. I had 3.5cm tumour grade 3 with 1 node involved.
The onc told me it was my choice whether to have rads or go on the supremo trial.
The reason for the supremo trial is they don't know whether they are over treating people with under 4 nodes involved by having rads and whether the long term risks of having rads outweigh the short term benefits.
My view is that if women hadn't taken part in trials in the past then there wouldn't be the treatment today that there is.
I was in the 50% who didn't have rads. You are also monitored for 10 years while on the supremo trial rather than 5 under normal follow ups. this is what made me decide to join the trial.
Good luck with your decision its not an easy one.
Chris xx

millykins01
Member

Re: criteria for radiotherapy after MX

Thanks for your comments - all very helpful. My instincts tell me to have RADS as I am so close to the reccomended criteria anyway & I know if I didn't & it came back I would forever think that was why. I was worried they would say I can't have them but think that's just me being paranoid. My ONC mentioned supremo but no way am I letting some randome selection decide my fate - it's my decision.
I'll wait to see what happens at the meeting but am sure it will all get sorted
XXXXXXX jo XXXXXXXXXXXX

Arnol007
Member

Re: criteria for radiotherapy after MX

Difficult decision, and its hard when left up to you.
You must go with your gut instincts and do what you feel is right for you, as I think you should be happy with whatever decision you make so that you have no regrets.
I had bilateral mastectomies last year. For early BC. BUT my presenting left side had 2 tumours (small 8mm and 4mm) my right side, had 8 tumours again all very small, but still there (seen on MRI initially). I had micromets on left, clear on the right. My left breast went to the US in the ONCA trial, my score came back very low 9, my onc said that they normally do not give chemo to a score of less than 10, but as i had it bilaterally and in view of my age I could have it if I wanted, so i decided to have chemo. Then the rads discussion came up,there are no studies in my case to say definitely that it would be of benefit, so i decided against as otherwise a huge amount of my chest would be treated, not like after a lumpectomy.
Its difficult asking other peoples opinions as they would feel bad if they said donot do it, and then you got recurrence. Thats why I think go with your gut instinct.
x

Nottsgal
Member

Re: criteria for radiotherapy after MX

Hi Milly
Before and after my mastectomy, I was told I would have radiotherapy. They only decided I needed chemotherapy after the operation, when they upgraded my cancer to a grade 3, from their pre-mastectomy assessment of grade 1. Anyway when I was coming up to the 5th chemo, out of 6, I asked the oncologist when radiotherapy would start. She said I need to decide whether I want radiotherapy. She said that in some parts of the country I wouldn't get radiotherapy as the cancer was less than 5cm and no lymph nodes were involved. But at Derby, they offer radiotherapy if the cancer is grade 3 and more than 3cm (mine was 4.4cm, I think). When I asked, she said the margins were clear. She then suggested I might like to consider the SUPREMO trial. This is a trial where they take a sample of women for whom they consider radiotherapy to be of borderline benefit and a computer selects half of the participants to get radiotherapy and half not. If in the half to get radiotherapy, it's still at the local hospital. They then follow the participants for 10 years (at local hospital) to see which half fare better in terms of health.

My first thought was that I want to chuck every possible treatment at the cancer to try to stop it coming back. The oncologist said I'm having chemo and herceptin, which treat the whole body whereas radiotherapy only targets where the cancer was - and it's all been cut out. I asked whether it was more likely to come back in that area and she said no, it could just as easily come back anywhere else.

The downsides of having radiotherapy are:
- risks to heart and lungs (1 to 2% of cases, but then I only had a 2% risk of breast cancer at my age).
- effect on skin: soreness and tightness.
- not able to have the reconstruction as soon due to skin damage.

I asked the oncologist what she would do if it was her. She dodged the question and said I have to decide. I didn't know. I'm not medically trained.

I don't remember them telling me so much about the downsides of chemo.

My friend's husband is a radiotherapist and he said go for it, so I have and start today!

Good luck x

msmolly
Member

Re: criteria for radiotherapy after MX

I had my mx nearly 3 years ago. I had stage 1 grade 3 IDC with ITCs in sentinel node. Radiotherapy was optional but I decided to go ahead with it because I had a lot of vascular invasion which can increase risk of local/regional recurrence.
I am also a belt and braces type of gal - chuck everything at it and hope that something sticks. Compared to chemo radiotherapy is a doddle and I am happy to have had it done. It is one more thing off the checklist if you know what I mean.

pinkrose
Member

Re: criteria for radiotherapy after MX

Hi I have been offered rads after it being said all along I don't need them. It is up to me now whether I have them or not! My surgeon said no need and doesn't recommend it as I had mx then immediate recon. I am 41 and had 1 lymph node positive, 2cm grade2, dcis, 4mm grade 3. I finished chemo last week and will start on tamoxifen. My onc said usually criteria for def rads is 4 nodes positive, lump over 4cm and a certain distance (can't remember what) the cancer is found from the chest wall. So I am well out of these limits, but still have option of rads. The onc said there is no evidence to show rads will benefit me or rads won't be of benefit. ??? I have to make a decision in the morning!

staycalmandcar
Member

Re: criteria for radiotherapy after MX

hi

im on my 5th of 6 chemos. im due a mx on 10th june with recon then 4/5 weeks of rads. i have/had 4 lobular tumours, one of which was around 5cm. i only had biopsy on nodes that came back as suspicious and follow up scans termed them 'atypical'. my breast was totally contorted but the chemo has worked well and it now looks and feels normal.

i brought up rads with my onc after reading that not everyone who had a mx was offered rads but that it had shown to be thhe most effective practice. she agreed, although to be fair it had been mentioned at the start, just nothing concrete. im in staffordshire - not sure if this is the sort of thing that varies in different trusts.
x

ksj
Member

Re: criteria for radiotherapy after MX

Hi
i had a mastectomey in 1995 had lymph nodes removed from under arm onside of op and then given tomoxifen and no other treatment had reconstructen i had ductal insitu with 2 lumps not sure of size about 2 cm i think and now 15 years later i have recurrence in same breast which as attached to chest wall and bone mets and ow on arimedex i was estrogen positive then as i am now but her2 was not done then but i am neg now

millykins01
Member

criteria for radiotherapy after MX

Hi
Just wanted to gather some info & examples of treatment people have had after their mastectomy. I have just had my last chemo & all the way through had been led to believe I would have radiotherapy after the chemo. Then at my last ONC meeting was told it was not standard policy unless I had 4 or more nodes involved and/or a lump of 4cm or larger. I have 3 nodes & 2 lumps of 1cm & 3cm. I am also TN so there's no other treatment for me. I have still been referred to the radiotherapist but want to see if there are examples of other people on here who HAVE received radiotherapy with lesser DX criteria so that if need be I can argue my case.

The news really threw me into a panic, partly because of the question mark over treatment but also for timings & planning as it all feels last minute - surely they would have know this at the start & I should have been told???
Your comments would be greatly appreciated
Thanks Jo XXXXXXXXXXXXX