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Anyone with DCIS who hasn't had radiotherapy??

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

Member

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

Hi Mole

That was my understanding too, but this registrar was trying to persuade me not to bother. The cynic in me wonders if this is based purely on my clinical need or whether there is a hidden agenda such as cutting down on radiotherapy for patients who there are no clear cut guidelines. If he had categorically said that No, I didn't need it, i would be happier, but he said I could have it if I wanted it!! How confusing is that - nobody wants radiotherapy unless they need it??
I have just finished reading an article in the BMJ that says that wide variations in radiotherapy is sometimes because of shortage of equipment.

Cathy
X

Member

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

my understanding is that if you have lumpectomy then radiotherapy is the gold standard whatever grade of cancer or DCIS

Member

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

hello cathy
I was dx with DCIS and LCIS in May 07, had WLE and then mastectomy 2/1/08. My grade also intermediate, margins less than 1mm...........and no mention of radiotherapy at all ! I think they assume not necessary after mastectomy, but I was not ever given option after WLE (intermediate, good margins)last year. Perhaps that's why my lumps recurred. So perhaps play safe and take it, I certainly would have done.
It's horrible having to make all these decisions with no absolute clear guidance.
Good luck

Juliet

Member

Anyone with DCIS who hasn't had radiotherapy??

HI

I was dx with a type of DCIS a few weeks ago and had WLE. I have just come from my initial appointment with the oncologist to discuss whether I need radiotherapy. As the tumour was small, good margins were achieved and good prognosis, he has basically left the choice of having radiotherapy up to me. The only sticking point is that the grade is intermediate - had it been low grade, definitely no radiotherapy and high grade more likely to need, but I am in the middle! Has anyone else just had surgery or heard any of the latest research regarding the need for radiotherapy in this situation?

Cathy