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?
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 1mmâŠand 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 thatâs why my lumps recurred. So perhaps play safe and take it, I certainly would have done.
Itâs horrible having to make all these decisions with no absolute clear guidance.
Good luck
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 didnât 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.
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
Iâve just looked up the benefits of radiotherapy and it cuts down on local recurrence and there is a survival advantage too so Iâd say go for it - went on one of the US cancer research websites
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 donât 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!!
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 didnât 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.
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
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 didnât 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 donât 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.
I too get very confused as I go to a support group and some have had radio and chemo while others havenât.
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 couldnât have immediate recon as I may need chemo or rads. Two weeks after the mast was told didnât 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
Hi Karen
Since posting this thread a couple of weeks ago, I have done lots of research on the treatment of DCIS - I donât know anything about LCIS but I guess because that is also âinsituâ 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.
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
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 wonât be having rads & def donât 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 âstarted to turn invasiveâ, one was 8mm. Iâm hoping âtheyâ got it right!!
Hello Cathy
I have also had DCIS, mx with LD recon at the end of July. I have been told I donât need any further treatment although the DCIS was high-grade and very wide spread. Lets hope âtheyâ know what theyâre doing!
I think from some of your previous posts we may be near(!) neighbours
Take care, Jan
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.
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 doesnât furnish their patients with enough FACTS to make an informed decision.
The criteria for having rads for treatment for DCIS with lumpectomy is
the grade - high grade usually rads
clear margins
how widespread DCIS is
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, donât always know how to read research papers.
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 âsterilise the remaining breast tissueâ - which I sort of related to, if that makes sense. As someone else has already said, my understanding was that this was âgold standardâ.
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 âlightweightâ 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 âa bit tenderâ right through to âbl**dy sore, broken down, blisteredâ - but it is extremely doable. And for me, it felt like an extra insurance policy - belt and braces.
Itâs 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,
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 shouldnât 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.