Hi all I was diagnosed with intermediate to high grade DCIS in JAN 04 at the age of 42, I have very lumpy breasts and decided I really ought to get them checked out. After 14 biopsy’s over both breasts - ouch!!! it was discovered and I had a WLI. The margins were not clear so I had another WLI much deeper this time and they are confident they have got it all. I had three weeks of radiotherapy but refused tamoxofen as I am pre menopause and didn’t like the sound of the side effects as opposed to the small benefit of taking it. Since then my Auntie has been diagnosed with BC.
I was really OK while having treatment and found I could cope quite well but afterwards I went to pieces totally. I just kept worrying that it would come back and no one was looking after me anymore etc. However a year on and I am feeling a little more positive. I don’t think about it every minute of every day and don’t grope my boobs every 5 mins to check for new lumps!!. I realised that yes this is an awful thing we have but compared to some I was very lucky. I just try and be more kind to myself now and enjoy life a bit more (i was a constant worrier). I decided to try things I wouldn’t normally do and I went ice skating, unfortunately i am now sat here with a broken elbow in two places!!! ce la vie, I suppose you never know what life will throw at you next and when it does get bad you have to deal with it the best you can. I have had great support from this site and I hope others can get the same when they need it. Big one arm hugs to you all
a little less confused yes of course its all making sense now. i was not offered this as the DCIS was in 2 distinct areas. one under the arm at the tail of the breast and the other at the bottom of the breast. I did try to go down that route as was initially keen to hang on to my breast. One of the few things ironically that hadn’t gone south despite breastfeeding 2 chidlren. Hey ho. I I also tried to hang on to my nipple and could be seen campaigning for the “save the nipple” placard and all! That was not to be either so now have a cute one made up of my new breast and once it is tatooed will be a pretty good replacement.
Agreed the biopsies were hideous. The bruising took ages to clear I was bruised and bruised again. I was getting a bit fed up with being brave at that point as well. But as I had not even considered that I would need a masectomy I was niaive. People kept telling me that it was the earliest point of detection so i assumed I would get a couple of tablets maybe a bit of radiotherapy and that would be it.!
I think it would have been beneficial if I had been prepared for the possibility as when I was told it was a bolt from the blue and I hadn’t thought of what I needed to ask. I wasn’t mentally prepared. i suppose the fact that there were 2 nurses the consultant my husband and I in the office I should have guessed.
naivety I really think they should stop deluding women that early detection means less surgery. DCIS can often be widespread and my understanding is that overall about 50% of women end up with mastectomy and this figure is probably higher for DCIS even though DCIS is pre-cancer and hasn’t developed the capacity to spread.
I would like to see research leading to ways of getting DCIS to regress back which apparently some cases do anyway. I think a lot of the operations for DCIS are not really necessary as it is estimated that it only develops into cancer in about 30% of cases over 15 years. Thus 70% of ops are not really needed.
DCIS has only been detected in large numbers since mammograms were introduced as it shows up as calcifications.
Mole
Doh what? Hey Mole
Where did these figures come from? My understanding is that there has been no significant trial/study on DCIS to indicate that it would regress back if remained untreated. Far from it. Who would participate in such a trial? I think many women end up with mastectomys with DCIS because the first WLE does not get clear margins so they usually then opt for masts (if only they used MRI’s for high grade - they wouldn’t have this problem-). I know I have put the stats for DCIS in a thread in DCIS heading somewhere - they are very different to the one’s you’ve quoted.
Celeste
Hi Mole It’s nice to have you back, you have so much information to give. Hope you had a good trip.
I too am interested in your point about it regressing back, never seen that before. Before I had each of my ops, I tried really hard and believed I could make it go away (kill off the cells) by changing my diet, taking lots of antioxidants to fight the cells (even tried visualisation). Sadly it didn’t work, but who knows if I’d had more time.
It’s really frustrating to read that most ops are not necessary, I knew that before I had mine but I didn’t dare take the risk. And I still live in fear of it returning on the other side.
Do you have any view on whether the large increase in incidence of BC in th last 10 years includes cases of DIS? This was raised in another thread, but no-one was really sure.
Anne
DCIS and likelihood of progression to invasive cancer Dr Susan Love’s Breast Book (3rd Edition) has a comprehensive section on DCIS from pages 267 onwards.
DCIS treatment is controversial because very little research has been done on women who haven’t had conventional treatment for it. Once someone has had a mastectomy (the most common treatment in the past) there’s no way of knowing whether it would have progressed or not. Autopsies on women who died of other causes suggest that between 6 and 16% of women live with DCIS without symptoms and that it is not a rare condition.
Some studies mentioned in Dr Susan Love’s Book suggest that about 20-25% of women with low grade DCIS will go on to get invasive cancer at the site of the biopsy up to 25 years after the initial biopsy. Low grade lesions may take a long time to be cancerous but there is no guarantee they won’t eventually.
However, in my way of thinking (I have low grade DCIS) around 75-80% of the operations for low grade DCIS are really un-necessary and the other 20-25% could be put off for maybe 25 years.
Dr S Love also says that ironically high grade DCIS is the easiest to contain as it grows in a concentrated area and doesn’t tend to spread out. Don’t know where she got this idea from - I had low grade DCIS which was concentrated in a small area so I don’t think it is as cut and dried as she suggests. she also mentions that the high grade variety shows up as calcifications on mammograms which the low grade one doesn’t.
She says the dilemma is that low grade DCIS which creates fewer and less aggressive cancers may require mastectomy. The high grade DCIS which is more likly to invade and to create aggressive cancers may be treatable with wide excision and radiation.
my low grade version was treated with segmental mastectomy ( a quarter of my boob removed (side near armpit) plus radiation.,
ON page 276 she gives details of B17 a study on DCIS recurrence when radiation was given / not given. It looked at treatment with wide excision, radiation and tamoxifen. Radiation has an impact on numbers of invasive recurrences thought not as much on DCIS recurrence. Tamoxifen halved the incidence of non-invasive recurrences from 5.1 to 3.9 % and halved the incidence of invasive recurrences from 4.2 to 2.1%.
I can’t remember where I read about regression of DCIS to atypical hyperplasia but I am pretty sure I did read it somewhere.
I am hoping further research will come up with less aggressive forms of treatment which are as effective. Too late for us of course,
Mole
Hi Mole It is interesting to hear the info on DCIS I had it a couple of years ago and because it was wide spread I had to have a mastectomy. The one thing I have never understood is how it developed so quick. It was 8 months between my two mamograms. The first was totally clear, 8 months later it was so bad I needed a mastectomy. I am picking your brains here but do you know how quick it can develop?
Sue
Different figures! …curiouser and curiouser. My figures came from an onc doing research for cancer research in Cambridge and they are very different. My DCIS was high grade and extensive - I managed not to have a mast because my surgeon (also a recon surgeon) was able to do a oncoplastic re-arrangement of breast tissue, when she removed the DCIS tissue. Very architectural and apart from a small scar underneath my armpit you could not tell that a large amount of tissue was removed from my breast.
High grade does show up as calcifications on a mammorgram - I assumed all DCIS did (could be completely wrong there).
I know that there are schools of thought that say that BC is caused by mammograms, I do not know enough about that to comment one way or t’other.
DCIS on mammograms Neither the DCIS or invasive cancer I had showed up on any mammograms which I had. The ultrasound showed I had a solid lump, it felt solid. It was only when I had the lump out (which I had been told was definitely benign) that I was then told I had DCIS around a 1.5 cm tumour. Dense breast tissue hides cancers, most premenopausal women have dense breast tissue.
Apparently in older women, dense breast tissue predisposes towards having breast cancer, so mammograms won’t be that good.
Just my luck to have dense breast tissue and be pre-menopausal
Mole
introduction Hi, I’m Sue. I am 53, almost 54, and last Feb I found The Lump. That was no problem, but the DCIS in the same boob was. After biopsy etc it was diagnosed as high grade but not yet invasive. As the area was central and upper, I decided on a mastectomy, as I was going to lose what little cleavage I had anyway, and as I am self employed I didn’t relish the time off I would need for radiotherapy. Plus, of course, I would always be worried about it coming back. I am so glad that I am not the only one who worries about it appearing in the other breast, I thought it was just me being paranoid!
Haven’t had any recon, I have quite a large dent as there has been damage to the pectoral muscles, so an inflation type is not on, and my surgeon wasn’t sure if I had enough spare flesh for a dorsal recon. (I’ve got plenty spare on my tummy, but he didn’t suggest that.)
Anyone out there in a similar situation?
Sue.
Hi Sue …so sorry I didn’t notice your post - and it seems nor did anyone else. I havn’t had a recon so I am afraid I cannot help you. Do you have a specific breast recon surgeon (few and far between). I’ll try and rustle up a few of the others who might be able to help.
Take care and do let us know what is happening
Celeste
DCIS I was diagnosed with DCIS last February. The ‘area of concern’, as they called it, was 52mm. It was grade 3 and I had a mastectomy in March with lat dorsi recon. I had no radiotherapy and no chemo as my lymph nodes were clear.
I have also had a nipple reconstructed - two weeks ago and I am waiting for it to shrink and heal.
I had a mammogram last Wednesday on the ‘good’ breast and I am now awaiting the results - these will apparently come by post - just wish the postie would hurry up!
Like many others I dread the thought that I may get it in the other breast particularly as what I had was grade 3.
Anne
X
—DCIS controversy —Hi, my name is Bernie. I was diagnosed last November, WLE and node removal and told it was all in the ducts so I wouldn’t have to have chemo but margins not clear so would have to have mastectomy. Then my surgeon called me back in and said sorry, mistake was made, one of the nodes was positive and another borderline so I would have to have chemo after all. That was cruel, I didn’t feel lucky that day. Anyway, had the mastectomy and immediate reconstruction, new breast ‘sells well’ (plastic surgeon’s phrase) but the chemo is truely awful, just had my second and seem to be getting all the side effects going. The thing that bothers me is the idea that DCIS is staged at 0 - pre cancercerous cells shouldn’t initiate all this violent treatment surely. My surgeon told me after the mastectomy that the DCIS was high grade so might well have caused me future problems but I still feel that I was well before diagnoses and all this treatment has permanently messed me up. Supposed to be writing up my PhD, can’t concentrate, just shaved my head and look like an alien, feel like someone waiting around to die. Kids and husband have been great but I feel like I live on another planet most of the time.
Not that I’m not grateful on another level for the excellent care, wonderful surgeon who probably saved my life - but, well, positive thinking isn’t coming too easy. Surgeon assured me that I’d have to live to be a hundred statistically before it came back in the other breast, that sounded good after the mastectomy but as time goes on I fell less reassured. I’m with you women who dread the screenings. Yes, why don’t they MRI scan DCIS patients before mastectomy? Especially since I was constantly being MRI scanned for a study - why not use that information to inform my treatment?
Moving post Dear Bernie
I am moving this to its own topic heading so it will be more easily seen
Kind regards
BCC Moderator
hello i had mastec last nov for widespread dics ,then 15 sess rads which finished 5 weeks ago ,must say i have been quite good since even gone back to work part time (foundation teaching at local primary school) i am still waiting for my check up after my rads though rang hospital they said it could be upto 8 weeks before i hear anything !! so just as well i am ok .i am 51 and post menopausal, so dont have that to worry about .iam also waiting to here from Addenbrooks genetics as my sister has had bc twice 15 years ago in left breast then 6 years ago in right breast, so we have to wait !!!