DCIS Support Group needed

Does anyone else feel the same way as I do about this? I really feel there’s a need for a dedicated DCIS support group. I feel I’ve been through so much over the past year that I’d like to meet with others in the same situation but all the posters advertising support groups at my hospital (The Royal Marsden) actually say on them “For Invasive Cancer sufferers only - not those diagnosed with DCIS”. Is our experience of treatment, disfiguring surgery, porostheses and discomfort less important or something? Am I in a minority here?

hI

I too have DCIS and i am beginning to understand what you feel. It has taken me nearly three months to get to this point- I was diagnosed two weeks ago after finding a lump that kept being found as ‘suspicious’ in biopsies.Whilst I find everyone extremely supportive here,I find it hard in other ways.

I’ve had a lump out, and have to have another WLE this week. I’ve been warned that I may need a mastectomy.People keep telling me that I m very lucky- I know that in many respects I am, when compared with others. It’s like we don’t quite belong anywhere!

A support group would be a great idea,

Love Freddie xxxxxxxxxxxxxxxxx

Hi,
Yes I agree there should be more support for DCIS sufferers.
I to was diagnosed with DCIS and had mastectomy in January, I found the whole ordeal very confusing you are being told it is only pre cancerous cells and may not become invasive but the only treatment is a mastectomy to me I felt that was a rather extreme choice or wait and see what happens. But I have lost a breast which I found just as traumatic especially now when you read in the media that women could be having mastectomies for DCIS unnecessarily.

I know I am very lucky not to have had to have further treatment and feel for the many ladies on this site going through such strenuous treatments.
Best wishes to you all
Maggie.

Hi there
The Marsden posters sound dreadful!

Completely agree with what has been said here. The trauma of getting to this point, with biopsies, waiting, results, waiting, ops, waiting, appointments…waiting…!! - Yes, we are “lucky” - luckier than many others, but, to quote a friend of mine “It’s still a shi*ty stick, you’ve just got the less shi*ty end” Think that sum’s us up quite well!

There are also some comments elsewhere on the recent media attention to DCIS, have we had unnecesary treatment? Well, my DCIS was found at my first screening mammo at 50, no lump to feel. Might never have gone any further - or might have slowly started to change to invasive. At what point would I have known? Do I regret the op, the wonky boob, the upcoming rads, well, no. Some might feel differently though.

Interestingly, I HAVE been invited to our hospitals MacMillan nurse Breast Cancer Support group meetings!! - but do I qualify?!

Thanks for starting this topic,
Lizzy M XX

I do feel lucky not to have had Chemo or Rads or an Invasive Cancer but every time I see my disfigured chest I don’t feel so lucky. I had both breasts removed, Pathology proved LCIS throughout both breasts as well as the DCIS in the right, expanders inserted, my body couldn’t tolerate them and after 18 weeks of canstant pain and spiking temperatures had them removed so I’m left with awful scarring and a totally disfigured chest. Whenever I see myself naked it doesn’t feel like “only” DCIS to me. :frowning:

I have to say, I am quite horrified to read that after all the trauma and treatment you ladies have endured, you are treated as any less important than someone with invasive cancer.

At my breast unit I have always been treated exactly the same as everybody else, regularly attending the support group. Lots of ladies attend who were diagnosed with DCIS alongside ladies with secondaries and nothing but admiration for each other. I was originally advised I had DCIS but my results showed that I had micro-invasive cancer, so does that mean I could attend the support at the Marsden for a shorter amount of time?

Did the poster really say not for DCIS?

I say, well done to everyone who has DCIS - doesn’t this mean they have caught it early which is what the Breast Care staff promote? There should be no need for a separate support group, however, there obviously IS a need in some locations and I applaud you.

Take care ladies and keep us posted xxxxx

I totally agree with the idea of a support group.

I could not for the life of me understand why I was losing a breast when I hadn’t found a lump…it was crazy to me.

I do understand the need for a Mastectomy …well…I think I do, or is it just a case of the cheapest option ie; would radio be too expensive to give someone with DCIS.

Mine was high grade DCIS and more was found in the breast tissue, but I cannot help wondering if the breast could have been saved…I’ll never know.

I had to find out all my information online, all I was given was a leaflet telling me about Calcifications at the main breast screening unit, thank goodness the hospital I actually attended for my Mastectomy were more helpful, but I still couldn’t help feeling that everything was taken out of my hands, I was given a path to follow and because of my state of mind at the time, I followed that path, without disagreeing in anyway shape or form.

Yes, I do think DCIS needs to be more supported, especially when we lose a breast because of it.

Linda

I was diagnosed with DCIS after my first routine mammogram last year. It seemed strange that I couldn’t feel or see anything and I was told it was the “best cancer to have” but I was having such drastic treatment. Women who had a lump were having the lump removed but I was losing my whole breast.

When I got the results after my operation I was told that they had found a 10mm grade 2 tumour (there was nothing in my lymph nodes and I didn’t need radiotherapy) so that made me feel like I had done the right thing having the mastectomy. If they hadn’t found that tumour I would probably be wondering if I should have had the mastectomy now all this publicity about DCIS has come about.

Love
Maude xx

Hi girls…I was first DX in Jan this year with IDC. I had a WLE to get rid of it, but the results said I then had DCIS in the margins…so another WLE was done in 2 separate areas. The results of that were still DCIS in another area…so hence my mastectomy with immediate reconstruction.
I think that cancer is cancer…and there isn’t or should not be a difference as to how the different kinds of cancer patients are treated. I am surprised … any treatment is a big thing in someones normal life…losing a breast is treatment too!!
I would say that ‘no cancer… is the best kind of cancer to have…’

Helenxx

Spot on, Helen “No cancer… is the best kind of cancer to have” Well put.

As Helen knows, and she has gently remonstrated with me!..I almost feel “guilty” - due to comments from both medical and non medical people - “It’s only DCIS”…“not even proper cancer”.

We all know that there are many women struggling with secondary cancer, and, yes, we are, at the moment “luckier” to have a Dx of DCIS.

And some of us “get away with” “just a lumpectomy” - whilst some have mastectomies. (Those are comments from BC nurse!!)

Linda, incidently - for once, not a NHS cost cutting initiative! They DO use radiotherapy for DCIS - if the op is a WLE (to remove the lump / area of DCIS) to - quote from the onc I saw “Sterilise the rest of the breast tissue” - catch any cells left behind. The decision on which op is made (I think) depending on size of area compared to breast; whether there is more than one area of DCIS, or if it is thought to be scattered through the breast.

And another thing - I’m sure everyone of us DCIS ladies will have a very sick feeling in their stomachs whenever it’s check up time. I didn’t know there was any problem before my routine mammo - and that is so often the case with DCIS. Bet we will all go to every appt from now on thinking it could all start again? Not because we are a bunch of pessimistic, negative women - just because of the experience we have all had.

Take care, all, keep chatting!

Lizzie XX

Hi Lizzie…Like you I do feel very lucky that I have not been DX with secondary cancer… I can’t believe your bcn said ‘get away with only having a lumpectomy’, eh love…as my bcn says…‘I can’t know what you are going through but I am here to help you in any way I can’…proper angel she is!!!
You’re right about the waiting for check ups Lizzie…for us all its a nail biting time… I too had a routine mammogram…so nothing now is regarded as routine…but this forum is a great place to air your views and not feel alone.
catch ya later
ps great photo Lizzie
Helenxx

DCIS is terrible because it both a false positive and a false negative: you are told it may never become invasive, and in some it does not - yet also told “there might be an invasive cancer in there” - false negative, because no invasive showed on the mammogram.

LCIS is terrible because they tell you that although it is not dangerous itself and they don’t remove it, it often means future cancer in either breast; why? how can a problem in one breast mean cancer in the other? - great, so now I’m just waiting to find a cancer in the other breast…

Anyway, you still have the terrible treatment, and the terrible worry about whether they got it all and recurrence and all that. So no different from invasive cancer. And I had 5 tiny invasive tumours found after my first excision but the DCIS went to the margins so I had to have the m-op; there weren’t any more invasives only DCIS.

And because of the way it all happened, on screening, I have been traumatized and it is over 4 years and my life and my head are gradually falling apart like when you see a building fall down in slow motion, so I do think a DCIS/LCIS support group wold be good.
sno

I was diagnosed recently and had a mastectomy at the end of April. I do feel bloody lucky. I’ve never considered it as losing a breast, just losing the possibly of cancer.

I don’t even mind the scar, which is strange. Before the op I wouldn’t say I was the most confident of people about my appearance, but that’s changed - and I don’t know why.

I’ve written a Blog about it -

breastcancer-swimmingwiththetide.blogspot.com/

But we knew cancer was possible before the mammogram. Then we had a mammogram that showed that we had DCIS that might, or might not, mean cancer. Which we already knew. And since mammograms produce false negatives - not finding anything on a mammogram doesn’t prove we haven’t got cancer. The majority of cancers are found by women between mammograms - clear mammograms. So we’ve had surgery because a mammogram showed something which studies show does not always develop into cancer. DCIS does not always develop, it is perhaps the ones that people find between mammograms that are the dangerous ones because they are growing. If we were that worried about cancer which I wasn’t why didn’t we just have a prophylactic m-op without testing?

One way of seeing it is - well, there might be something wrong, so get rid of it just in case. But ‘getting rid of it’ is pretty drastic action to some people, and worse when you think you might not have needed it.
sno

I was dx with DCIS,intermediate grade three years ago. I was advised by the surgeon to have WLE. They got clear margins,the DCIS area was 1cm,so I was not offered radiotherapy or Tamoxifen,as they felt the risks in my case would outweigh the benefits.
I am 69 and had 3 monthly checkups,plus yearly mammograms since then.
I just have to trust the surgeon,I feel I am being monitored and should any problem crop up I would insist on more drastic treatment.
My scar is about 3 inches long and it healed well.
I had 3 yearly mammograms since the age of 50, all clear until the last one when they found what looked like sparkes from a firework in my right breast.These were calcifications.When told I had BC,I just walked about in a daze for a few days then made a knee jerk reaction and told the surgeon I wanted the breast gone.He talked me out of it,said it wasnt needed ,a WLE would be all that was needed in my case.
So far ,so good.

Hi everyone
I read this post with great interest having been diagnosed as DCIS recently. I had a WLE and SNB about 6 weeks ago. The tumour tested as 16mm and grade 3 aggressive, no lymph gland spread but HER+. I am now going through chemo to (in the words of the consultant) put me in the same bracket as someone who had had a mastectomy. I then have to have rads and Herceptin etc afterwards.
What I don’t quite understand is that having undergone a biopsy to test for cancerous cells why they didn’t test for the aggressiveness at the same time, as I was originally told I wouldn’t need chemo.
In fact my suspicion is that if they had known the lump contained aggressive cells in the first place I too would have been classed as a mastectomy patient rather than a WLE one.
The treatment regime I am going to do is supposed to reduce my chances of reoccurance within 10 yrs from 1 in 2 with no treatment to 1 in 9. I’m 56 so this makes it a no choice decision for me. Interestly though I haven’t been offered the mastectomy so I am guessing that attitudes to it are changing in regard to DCIS.
Maggie

Hi Maggie

I’m puzzled too: if your margins were not clear, they would have done further excisions until they were - unless, perhaps, there was only very slight margin involvement - which might explain chemotherapy - but I don’t know and think you should ask that specific question among others. But assuming margins were clear, the need to ‘put you in the same bracket’ as someone with mx may be because it is always possible even with clear margins that areas beyond the excision are in fact affected - you wouldn’t know unless you removed the whole breast to have a look, things don’t always show on mammograms or ultrasound, and the biopsy can only tell you about the cells in the biopsy and no others. It is of course, therefore, entirely possible there is no further affected tissue. No-one can know. I understand (perhaps incorrectly) that more often than not there is not. I don’t think they can even tell you how likely it is, except possibly a statistic such as in x of y women like this there is further abnormality, which doesn’t tell you anything about you. But I think you need to ask this specific question.

I have not heard of biopsy tissue not being tested for grade so I would strongly suspect yours was but that they omitted to mention it to you; whatever the grade of tissue in the biopsy, it doesn’t tell you what grade any other affected tissue will be - so we don’t know what grade the biopsy showed, only that the excised tissue had some grade 3 in it.

Commonly, with DCIS of whatever grade, with clear margins, radiation is offered; and adjuvant treatment depending on the other features (hormone status, or in your case HER2 status). I was under the impression (perhaps incorrect) that chemotherapy would be given only if lymph glands were affected and yours are not.

Therefore your chemotherapy is a little puzzling to me, though who am I to say. I am wondering if they are trying out this particular regime on you to compare it with others for effectiveness, and if so, they should explain that to you and have your informed consent to be included in such a comparison. Perhaps they are not, they should not do this without making it absolutely clear to the person, but I have heard so many stories … and because I am an old cynic it is a question I would want to be asking. It is also a fact that there is no single consistent regime on treatments everywhere - different teams will give different sets of treatments to people with the same sets of features - and you might prefer a different approach. Since chemotherapy is not a one-off sweet pink pill with no side effects, if it were me, I would be asking why, and what if, and what are the alternatives, and what if I don’t want it, how does it affect my prognosis, and which chemotherapy, and why, and what are the long term effects of that, and, why is your prognosis of 90% 10yr recurrence reduced to 50% without the chemotherapy, and does it relate to the HER2 status, or is it something different, and, and…and I would try to bide my time and think about it because you’ve had the surgery, nodes clear, clear margins (presumably) and there is no evidence of there being more cancer so you have time enough to find out what it all means before, if, you consent to their proposals which affect your life, not theirs.

Sorry, I sound awful. My own experience has been so bitter, I just feel so many of us are kept in the dark…

Best of luck with your decisions

sno

Hi My name is Linda I was diagnosed with dcis after a routine mammo in November 09 I was told the dcis was small and I would need an op but may not need treatment afterwards. Because of Christmas and the snow my follow up appointment was cancelled. Waiting again but finally received my appointment 20th Jan. As I went in confidently to see my surgeon my heart sunk as he began talking about margins, radiotherapy and daily tablets(not tamoxifen!)I have to have another op as the clear margin neeeded to be 5mm but on close inspection in the lab they only had half that. I do understand this and am grateful my doc is so thorough but I do feel worried of the unknown.
The other thing is I lost my sister only 1 year ago to ovarian cancer and have read one of the side effects of hormone drugs is this. Thank you ladies for taking time to read this I would love to hear from anyone.xx

Hi Snowwhite
I suspect my margin on one side was not as wide as they wanted as the lump was very close to the chest wall. This may explain why I’m having the chemo. I’m now half way through ie finished FEC and start Taxotere in 3 weeks. My non-surgical side arm is a mess as the veins have collapsed and they are having great difficulty finding one for blood tests and treatment - now talking about PICC and central lines. I need to read up on those! Went down with shingles 2 wks ago too - very painful.
Linda -
I haven’t got as far as looking at the side effects of Tamoifen - I’m having to take one stage at a time as there is such a lot to get through. I’m trying to stay positive and carry on as normally as possible, especially as I know I have 12mths of herceptin treatment to go through once I’m through rads - I just try not to think about how long and how disruptive it is going to be.
Best wishes to all
Maggie

rockinghorse- I don’t think tamox. can cause ovarian cancer but it can make one more susceptible to womb cancer - you have to look out for unusual bleeding.