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Anyone with DCIS who hasn't had radiotherapy??

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Re: Anyone with DCIS who hasn't had radiotherapy??

I've done a lot of research into this as I had a small area of DCIS and the risks of side effects from radiotherapy outweigh reduction in recurrence if DCIS is low grade, small and with good margins and benefits v risks are doubtful if some of those factors are present ie small, high grade but with good margins. In my case I was given one measurement for margins and told another 10 days later. Now I don't know what to do at all!

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

Hi
I am 41 and I had widespread DCIS and so had a mastectomy and back flap recon in december and had no other form of therapy other than visits to the consultant. I had my lymph node biopsy done as a day op before major op and all was clear.
I believe I don't need any other treatment as they removed all my breast tissue, I did have to have a second operation as they still found some but after that all clear! (I hope)
I suppose as well, does anyone ever really know? Good Luck with it all and take care. Debbie

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

I had a wle in Dec 2004 at the age of 41 for high greade DCIS. Then a further wle in Jan 2005 as they hadn't got clear margins. The oncologist said that I did not need radiotherapy as there were no cancer cells after the second op and that the radiotherapy would do more harm than good.
In Oct 2009 they found that the DCIS had recurred and I had a mastectomy and TRAM reconstruction in Dec 2009. Again it was found to be high grade.
I will always wonder if it would have come back if I had had radiotherapy - however I would not have been able to have this type of recon if I had as there would have been too much scarring.
It is very hard to know what to do, I know I just wanted to make sure it was all dead and gone.
Good luck on your journey whichever route that takes

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

Hi. My case was exactly the same. I too fell into the intermediate bracket. I didnt know what to do at all and was so confused. I spoke with my own GP who said that she felt it was better to have the treatment as I am only in my forties, then I would know that I had done everything to get rid of it and could get on with life. I was referred to another oncologist for a 2nd opinion, and he told me in clear terms that I should have the treatment, as cancers can come back and are not always visible on mammograms and can be picked up late.

I started the treatment in January and finished a few weeks ago. Had five weeks of it. Have managed very well and am glad now that its all finished and done with.

I do hope you come to a decision that is right for you. I know it is hard but you will get there. All the best.

Kathy

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

I had WLE, clear margins and was 48. My oncologist left me to choose but reading between the lines, it would seem that he felt I shouldn't need radiotherapy. However, after much research, scouring the latest journals, guidelines etc, I decided to go with rads but received a lower dose over a shorter period than the norm. There is an ongoing study on whether rads are needed for certain cases of DCIS so will be interesting to see the results.

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

Hi Cathy
I had Dx of DCIS - small area, WLE got clear margins. Age 50.

Right from the start, I was told that radiotherapy was part of the treatment plan - and that it reduced the possibility of recurrance. When I saw the oncologist - he used the term "sterilise the remaining breast tissue" - which I sort of related to, if that makes sense. As someone else has already said, my understanding was that this was "gold standard".

Yes, there is a big debate on DCIS being overtreated, mine may never have changed and become invasive, but - big BUT, even with a relatively "lightweight" diagnosis, I still felt that I wanted to do as much as possible to reduce the chance of recurrance.

Yes, the radiotherapy is tiring, not least because it is daily, and the skin reaction can be anything from "a bit tender" right through to "bl**dy sore, broken down, blistered" - but it is extremely doable. And for me, it felt like an extra insurance policy - belt and braces.

It's a personal choice - not one I had to make because it was a given, but I would have gone for it, if it HAD been my decision.

Wishing you, and everyone else here, the very best,

Lizzie

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

The criteria for having rads for treatment for DCIS with lumpectomy is
1. the grade - high grade usually rads
2. clear margins
3. how widespread DCIS is
4. age of person - under 50 usually rads offered, over 50 and fits the above criteria, then no rads probably needed. If mastectomy, then unlikely rads are needed.
The point is that DCIS is very likely to be overtreated and like Dahlia says, most of us are not given adequate information and even if we can access it on the internet, don't always know how to read research papers.

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

Hello

My younger sister had a TINY DCIS, a lumpectomy and then 6 weeks of rads - this was in the US where ltiigation hangs over the medical profession. Personally, I doubt rads were appropriate and the damage it does is horrendous and permanent.

There are plenty of ladies on here who do not have rads as part of treatment for DCIS. For some it is an informed decision, for others it is not always the case even with reagrds to surgery. Unfortunately some surgeons doesn't furnish their patients with enough FACTS to make an informed decision.

Good luck with yours

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

Hi, my onclogist did not give me an opt out for rads, I am the same diagnosis as you. I am getting 4 weeks rad commencing oct 19th after my hols. This is your life and your decision in the long run. I personally would play safe and have them. It not as though you can change your mind later down the line. I hope this is helpful.

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

Hello Cathy
I have also had DCIS, mx with LD recon at the end of July. I have been told I don't need any further treatment although the DCIS was high-grade and very wide spread. Lets hope 'they' know what they're doing!
I think from some of your previous posts we may be near(!) neighbours
Take care, Jan

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

Hi everyone

I had high grade DCIS diagnosed in March, mast + immediate recon in May. I have been given tamoxifen (yippee - not!) for 5 years and have been told won't be having rads & def don't need chemo.

I sometimes wonder if I should have had rads as when the breast tissue was examined after mast, they found 4 areas which had 'started to turn invasive', one was 8mm. I'm hoping 'they' got it right!!

Lots of love to all. Cathy x

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

Hello I have had DCIS and no radiotherapy as they got it all out they also took my Lymph nodes out in day surgery. I think it is all scary even though mine is nearly a year ago. well good luck Lindalou

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

Hi Karen
Since posting this thread a couple of weeks ago, I have done lots of research on the treatment of DCIS - I don't know anything about LCIS but I guess because that is also "insitu" the same treatment planning applies. As DCIS is a precancerous condition, that is all the cancer cells are contained within the breast tissue, chemotherapy is definitely not needed as chemo is only given if it is thought that cancer cells may be in other parts of the body. It is likely that the others in your group who have had chemo, had invasive cancer which can sometimes be mixed in the DCIS, but you would have been told if you had this. Radiotherapy is usually only given to patients who have had a wle with clear margins to ensure that any cells that may be lurking in the nearby breast tissue is destroyed. If like you did, you have a mastectomy (and my heart goes out to you having a bilateral mastectomy) there is no breast tissue left, so no need for radiotherapy. So from what you said, you have been treated properly. It is so confusing, as I have not even been offered tamoxifen as my onc said not necessary in my case.

Cathy
xx

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

Hi Cathy 59,

I too get very confused as I go to a support group and some have had radio and chemo while others haven't.

I was diagnosed with grade 2 LCIS and DCIS I was told I needed a wle which I had, unfortunately there were no clear magins so advised to have a bilateral mastectomy but couldn't have immediate recon as I may need chemo or rads. Two weeks after the mast was told didn't need chemo or rads (no lymph nodes affected), other people in my group with very similar history have had chemo/rads some were told because of their young age (42) I was 41.

I have now had the recon and feel great but I do wonder if I should have had more treatment I am on tamoxifen and zoladex injections now

Take care and stay strong

Karen

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

Hi
I had a mastectomy and snb in Sep 07 for widespread high grade dcis. I was recalled 2 weeks after surgery and told I needed radiotherapy for 3 reasons High grade cancer cells, pagets disease and cells only 1mm from chest wall. 5 weeks later they had changed their mind and I didn't need radiotherapy after all..... It took me a long time to accept and come to terms with that decision as I felt that I was not getting everything thrown at the buggar.
The reason they gave me for not having radiotherapy was because although the margins were close, margins don't count when the cancer cells have not yet become invasive. They have a 5mm margin when the cells have become invasive. As all the breast had been removed there was no breast tissue left to use the radiotherapy on. I hope to goodness they were right.

Sandra

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

Hi Sweetheart

I am sorry to hear about your problems with radiotherapy, but yes, after lots of research, I too am going to chuck everything offered at this disease as I am not brave enough to face a recurrence even though it may not kill me in the end. Radiotherapy sounds very gruelling and in particular, exhausting. I already have no energy and am so unfit that its not true, so I am not looking forward to that bit, but there is no way I want to go through the uncertainty and anguish of finding another lump in the near future so if I can reduce this risk, I will. I agree with you that sometimes they underestimate the risk in some people and I dont want to be another statistic. I also agree that if things go wrong I will go for a mastectomy also

Cathy

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

I had a routine mammo and this showed up calcifications, was told not to worry as this could be normal for my age 53 was then given a scan and radiographer shrugged his shoulders and said didn't think ther was a problem but that I was to have a biopsy to be on safe side. When I went for the results I was told that I had high grade dcis and that it was widespread and that the only route was mastectomy, after taking several weeks to think about this I decided to have a masectomy, consultant said that I would not need any further treatment. Ten days later I went to the hospital for the dressings to be taken of and get my results, and surprise surprise after all their saying I would not need this that or the other I ended up with a three week course of radiotherapy, which my skin reacted very badly too. I ended up having to have burns dressings done, and only now three months after radio has the redness gone and I now have an 8"x8" square that has a lovely tan, ask me again would I have the radio and I would say yes, I would throw everything I was offered at this little killer. I am still in a lot of pain as my arm movement was restricted by the burns I had a right mast and I am right handed, but I have now gone back to work only part time and find I am exhausted by this and sometimes the pain is almost unbearable, but I would still go the same route, although now with hind sight if the left boob shows up as having calcifications on my next mammo I will go straight to masectomy and not have the other bits done other than the snb.

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

I think they are reluctant to offer radiotherapy because I have a rare variant of DCIS (intracystic papillary carcinoma) which rarely invades. However, most of the women who have had this are elderly (average age of 78 - 80) and therefore as they tumour grows so slowly, they don't get radiotherapy. However, I am 48, so I hopefully have a few years left in which it could recurr, so yes, I am going for the safe option and having radiotherapy. I am going to get a second opinion as this onc was so wishy washy I dont have much faith in him now!!

Thanks again everyone for your support

Cathy
xx

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

dear Cathy

I've just looked up the benefits of radiotherapy and it cuts down on local recurrence and there is a survival advantage too so I'd say go for it - went on one of the US cancer research websites

Mole

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

Hi Cathy
I just received my pathology results yesterday. I have grade 1 DCIS with good margins. I met with the oncologist and breast surgeon and will have 3 - 5 weeks of radiotherapy. I would have thought that radiotherapy would have been the sensible way to go.
Best of luck
Kirsty