DCIS controversy
DCIS controversy HI all
I have moved this so it is seen by more people
Kind regards
BCC Moderator
DCIS controversy
posted on 3.03.06 3:55 pm
Bernie
—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?
-DCIS? Hi Bernie,
As you can see on the another thread Hatts had a similar query and I would offer the same answer. I am sure you know that DCIS whatever grade is a diagnosis given when the ‘carcinoma’ are in situ in the duct - they have not become invasive or ventured out to any other part of the breast or body. Yours unfortunately had ventured to the node(s) - this means it has become invasive - no longer pre cancerous - sorry. That is why they are treating you with chemo. Again my response to Hatts was to get a copy of her path reports, and if you also may find this helpful. It is important that you know your ER, PR and HER2 status.
I am hoping that the remark the ‘breast sells well’ turns out to be a technical term, otherwise he/she needs a crash course in sensitivity.
I have no idea where your surgeon got his stats from - perhaps he is right but I would be inclined to ask him which study he is using to come up with this assessment.
Bernie why were you being MRI’d? What study? Yes this should have been picked up but obviously it would depend on your answers, the timings and what the study were looking for?. MRI’s do pick up high grade DCIS but is not the normal modality of screening, but as it works, it surely would ultimately save a lot of money, so many of us seem to have to have another WLE or mastectomy because they didn’t get clear margins, - it must be cost effective.
I’m not sure that your surgeon has done such a good job in providing you with information, you will find lots of info here and if you are not sure of something just ask and you will receive, - the women on this site seem to be incredibly knowledgeable.
Bernie after treatment I was trying to finish by post grad - it was like wading through mud. All of this takes some getting used to, be gentle on yourself. Award yourself a be totally selfish card - and use it! You don’t say how old your kids are?
There is also plenty of support here Bernie, and I am sure I am only the first of many to say - so sorry that you’ve had to join us - but welcome anyway. Please let us know how things are going.
Very best wishes
Celeste
—To Node or not to know? Thanks so much for your lovely supportive reply Celeste. Planet cancer isn’t so bleak with such good company. One small step for woman, one big step for womenkind! I talked about the Better Care study I’m on under the Secondary breast cancer/Effects of Epirubicin on the heart thread. Yes of course you’re right, I’ve got cancer that’s why I’m having chemo, I’m still a bit scrambled about all that because I was told I would be cured by surgery initially when it was thought that the nodes were clear and I just had DCIS. However, generally women are plunged into the turmoil of mastectomy etc often having just gone for routine mamography and it is worth asking whether this should happen - whether they would have been better off without the routine scan since most DCIS doesn’t develop into cancer…
My daughter is 14 - her immediate reaction was that three of her friends’ mum’s had breast cancer and were alright now. She’s been brilliant, one day she turned up at the hospital after all my visitors had gone, found her own way there with an A-Z and bought me a pastry with her pocket money having left her friends to do so. I suddenly felt the tables turn, she was looking after me! My son is 12 and doesn’t seem too disturbed by events. Two of my first cousins (sisters) died recently of bowel and throat cancer, another cousin is just getting over chemo for ovarian. All women around my age. I picked up my Turkish friend and neighbour from WLE surgery last Wednesday. I’m going with her on Monday to find out if its got to her nodes. She only went for a check up because of what happened to me.
This forum is brilliant. The worst thing is not being able to bounce off other people in similar circumstances without being a bore. Thanks again for this invaluable help.
— —Back again - getting addicted to this site! My last post was contradictory to say the least - I was diagnosed with DCIS and then they found tumour cells in the nodes and then I have the nerve to question routine scanning. I should say I went to the doctor after a discharge and some pain, I’m too young yet for the routine scan and I do wonder about the efficacy of self-examination and all the publicity given to breast cancer - I’ve read that most cancers are found when patients present with particular problems and then there’s the question of DCIS found through routine scan and leading to mastectomy when it appears that 70% of DCIS doesn’t develop into invasive cancer or so I’ve read in some studies.
My surgeon is a lovely man, I trusted him immediately and I wouldn’t ask him what study he got his statistics from as he was obviously trying to reassure me when he said that statistically I’d have to live to be 100 before I got it in the other breast. I remember asking him how could I know if the cancer wasn’t somewhere else in my body and he said that was ‘unknowable’ and I shouldn’t think that way. He was very human and I admired him all the more for that quality as well as for his undoubted expertise and skill in excising cancer. He is, after all, dealing every day with people facing the most fundamental existential reality of life. However, I will ask for my ‘path notes’ whatever they are as I only got to glance at the lab report after my mastectomy and then the interview was over and I was shaking his hand saying ‘Thank you for saving my life’ and then it’s goodbye, you’re on your own now, you know how it is…
My DCIS I was diagnosed with widespread DCIS after my first rourine mammogram in July 2005. I was advised to have mastectomy and immediate reconstruction, although my surgeon said WLE and radiotherapy might be an option if I really wanted to save my breast.
I simply wanted all the bad bits out, and opted without hesitation for mastectomy. I knew I would never feel satisfied all the cancer was found otherwise.
It turns out I was correct, as there was already a small area of invasive cancer…so the DCIS was already progressing. I am so glad I took the more radical option.
love, Helen
—Three cheers for the white coats! —Right Helen - it’s what most women would do and I’m so glad that you’re ok now. I’m struck by the high quality of care I received on the NHS and at the same time by the fact that treatment is stil fairly crude - taking a hammer to crack a nut. I suppose it’s come a long way though too, it’s not so long since everyone had to submit to the same chemo regime rather than having it tailored to breast or lung - and then there are these wonderful new drugs coming into use all the time. In the future I imagime chemo will be tailored to suit the individual - indeed I’m taking part in a research study which aims to move treatment in that direction.
On a previous note, I thought the plastic surgeon saying that my reconstruction ‘sells well’ was funny - but not offensive in any way as that what it’s supposed to do - pass as a real breast which it does splendidly when I’m dressed although of course it’l never feel as nice and soft and part of me as my old breast used to feel. These medical people do a fantastic job in circumstances where they are breaking new ground all the time - reconstruction is another area which has come on tremendously over a short period. I worry that with all the current media emphasis on treating the emotional state of the patient - which in most cases is best done by friends and family - the tendancy is to downgrade the importance of medical expertise, experience and innovation which is what is really keeping us all going to live and feel and breathe and stay here a bit longer.
Mast - or not! Helen it is true that for many women mastectomy is the right option either because of a medical need or an emotional need. In your case it sounds like your emotional need to have a mastectomy worked out extremely well as they had found evidence of invasion. I’m sure Bernie you appreciate that many women have many different reactions to BC/DCIS - for myself I desperately wanted to preserve my breast without compromising cancer safety. I feel I have achieved this and my surgeon is in accord. Realistically for all choices only time will tell.
Bernie I am never sure where this 70% figures comes from and more importantly which study established that. It is my understanding that this is unknowable as not many women will particpate in a ‘which group wants to wait and see if it develops’
I am sure you will realise if not discover fairly soon that there is never enough money for cancer research, and certainly some women cannot progress and live their life fully without addressing their emotional state. Clearly a holistic approach may be the answer. Surviving is one thing - living quite another
Best wishes
Celeste
I’m happy to be among a such an intelligent and practical group of women and I know this forum is equally for when we’re not feeling so hot so thanks for taking the time and for welcoming me when I first found this site Celeste.
On the DCIS controversy, I read a few articles about studies when I was first diagnosed, I’d have to hunt through this computer to find them all but the gist of what I gathered was that screening can lead straight into surgery, surgery can lead to recurrence esp in women 40-49 (my age group) suggesting perturbence of distant, dormant disease not always a good idea and so more informed consent to screening was necessary.
I agree resources are scant. On the emotional care side, I had a rueful laugh when the surgeon told me I would need a lot of psycological support (having just met and diagnosed me) knowing full well the hospital had no such resources so why create the expectation that any such need would be fulfilled? I’d rather rely on freinds and family than strangers who might have an agenda or some instumental 12 step programme they might want to shoehorn me into. Not to say I won’t be availing myself of everything going - healthy living days etc. However, I live in Stoke Newington where I couldn’t buy my carrots from Fresh and Wild without being urged to refuse mastectomy and all treatment and to heal myself. The emotional literacy industry, often funded by the government and constantly pushed by media I find alarming and insulting but of course I value forums like this where we have an interest in looking out of each other as we’re all in the same boat.
All the best,
Bernie
Re DCIS or DC Hi all, on the subject of one or the other, what I really wanted to hear at the dx, was DCIS. On the way to the hospital I explained to my husband what it all meant,so he too was hoping for this news. When we arrived, after a wait of about 20mins (nerve racking) we were called in .The first thing we heard from the surgeon was good news ! DCIS ! The nurse also was pleased. We went to an adjoining room where she wrote the same in my diary . I then had an appointment with the oncologist and he said there was nothing in his records to show any evidence of DCIS . Well, we were both shocked & then I had to wait a week because the nurse was on holiday & the surgeon that operated on me was ill. When I was finally able to talk to the nurse, she was very apologetic about the mistake that had been made !!! Anyway, I asked for a copy of ocology report & now it seems I have grade 3 invasive ductal carcinoma. A little different !!! The good news ,according to the report ,no lymph gland or vascular involvement. Good news (or not). To be honest I am probably feeling a little bitter about all this, as I’m sure you all are too with this horrible disease. One thing I am sure of is it really helps if you know exactly where you are, so that you DO have involvement with the decision making & whats best for your type of BC, Lots of love,Lez xx
Invasive DCIS I have found the posts on DCIS really helpful, as I was initially confused by the apparent contradiction in terms of ‘Invasive’ and ‘DCIS’, which I thought was supposed to be confined to a duct. At my first meeting with the surgeon following the core biopsy, he said clearly that the cancer was invasive, and therefore all my lymph glands would have to be removed.
I really beat myself up after my WLE and axillary clearance, for not questioning the need for axillary clearance before the op. The margins were not clean, so had a mastectomy 4 weeks after WLE. I think I still mourn my nodes more than my breast - strange as that may sound.
Another thing which confuses me about my dx description, is the fact that it is Stage III, and I have yet to be told clearly what Stage III DCIS means. My tumour was just over 2cm, hormone receptor positive, HER neg. Following the axillary clearance, my nodes were clear. From what I have read, none of those factors would justify a classification of Stage III.
Can anyone clarify the ‘Stage III’ bit? I think the BC Nurse said once that it meant there was a higher probability of microscopic spread. She has been so supportive, but don’t want to keep nagging her with questions after the fact. I had a CT scan on my head and torso before surgery in January 06, after 3 cycles of chemo. The Scan was clear.
Hope these questions make enough sense to elicit some answers.
Same happened to me Hi all
I have posted this on behalf of a new user Emma
Moderator
Breast Cancer Care
hi bernie, that was just like reading my own story, unbelievable!!! i came out of hospital about 3 weeks ago,had dcis in my right breast and was told i would need no further treatment. Only just got my results on tuesday and they have found microscopic cancer cells in my arm pit so i need chem and the radio, i am absoulutely gutted. The operation i had was a mastectomy with immediated reconstructive surgery and had the LD flap. look forward to hearing from you. Emma
Hello Emma, sorry this has happened to you too but very glad to compare notes. We can talk to each other via personal message on another bc site at phpbbserver.com/breastcancer/index if you would like to do so in private. I seem to be an oddity, as the cells they found in my nodes are hormone negative - so I can’t have tamoxifen following chemo - but the DCIS they removed in the breast tissue was hormone positive so I was told I’d have tamoxifen initially.
However, that’s all a bit confusing and not really where you are at present. Don’t worry too much about chemo, it’s do-able and I’ve heard rads are a cakewalk after that. I’m not being given rads myself, not really sure why. Perhaps it depends which hospital you’re under. I’m in North London under the Whittington for chemo and the Royal Free for surgery.
How are you coping? You sound very strong and upbeat after all that surgery. It can’t have been easy. There’s lots of support and advise available here and at the site I mentioned above and I’ve often let my chin wobble on both and got a lot of encouragement from other women who’ve travelled a similar road and are very generous in sharing their experience.
You’ll get through this Emma. Keep in touch.
All the best,
Bernie