diagnosed today with DCIS

thanks for that cathy59. Do you have yearly mammograms now? My consultant talked about me entering the Ibis trial (think its Arimidex) but only if I wanted to help - cos I might’ve been in the dummy group. It got me thinking about different treatments and whether the medical profession always follow best practise or whether we are sometimes used as guinea pigs.

HI JudithAnn

I think I will be having annual mammograms - haven’t had the followup appt yet, but I am sure that’s what they said. As for whether the medical profession follow best practice, they should base all their treatments on the best evidence available, but there does seem so many variations. Clinical trials are the way to improve treatment, so they must be investigating whether women with DCIS/LCIS would benefit from another hormone treatment other than tamoxifen, which has been shown not to be that useful in DCIS (don’t know about LCIS). The people on clinical trials are guinea pigs if you like, but they will be fairly confident that the drug they are trialling is likely to be beneficial (based on other trials etc). However because in this case, sponsorship for the trial will be from the drug company, it does make you wonder?


I am also confused by the different treatments in different parts of the UK. I was dx high grade DCIS late Oct 2007, had mastectomy with lat dorsi recon early Dec 2007 as they told me this was the only option for high grade and widespread DCIS. No chemo, no rads and not tested for hormones as told it was unnecessary, had 2mm clearance to skin and 1mm to chest wall which I am still worried about from time to time, 1mm is not much is it!!!

I asked about recurrence and was told that with mastectomy they take away all the breast tissue but that there is a 2% risk of recurrence in the affected side due to rogue cells remaining occasionally and that in the other side DCIS recurrence rate is 1 in 8 over 5 years. I look on that in the way that I hope to be one of the lucky 7 in 8 who don’t get recurrence.

I have up days and down days still, now 6 months down the line from my op mainly due to fatigue and pain from nerve damage and the lat dorsi breaking away so need another op to repair that. But over the past 3 weeks find that I am worrying more and more as I now have swelling on my back and underarm and pain in the shoulder blade area to the point I can’t lean back on soft pillows and wakes me up too, I see lympho today as BCN thinks it is that.

On my up days I am fine and on my down days I am the pits, tearful, fearful the lot!! I just keep telling myself tho that BC takes so many lives and why am I letting it take over my life, I will not let it do that forever. That said, we all need time to come to terms with the huge changes in our lives. Life is for living and even tho I have been damned sore for ages I have already helped out at a Breast Cancer Care fundraising day selling raffle tickets, strutted the catwalk to raise funds for the local cancer support centre and will also walk the survivors lap for Relay for Life for Cancer Research UK. My goal is to do the relay next year and the race for life.

I find reiki and reflexology immensely helpful to enable me to relax and to cope with the ongoing pain that I have. Overall, I have come to the conclusion that if I was gonna get BC then DCIS was the best of a bad lot. I have met so many women who have gone thru so much more than me and I am really grateful that I was lucky enough to escape the chemo, rads and meds that others have to endure.

luvnhugs to you all, Carole xxx

Hi everyone

After talking to my surgeon I was persuaded to have a WLE .
This was done,I was only in hospital overnight,no drains and no complications.
They said they had good clear margins and would not need radiotherapy and tamoxifen was not offered as they felt the side effects would outweigh the benefits in my case .
I am now due for my first yearly mammogram and am dreading it to be honest.
Its the waiting for results that gets you,this is such a silent disease you have no way of knowing whats cooking inside .
I felt a bit uneasy at the conservative treatment,but you have to put your trust in the doctors they are dealing with this every day.

Annalyn x

Hi Annalyn

I am due my 1st mammogram next week and am getting rather concerned. I’m having problems sleeping again and biscuits/ chocolate are slowly becoming part of my daily diet again. I had high grade DCIS and was treated with surgery and radiotherapy. I am convinced that they will find it in my unaffected breast and I am going through all the scenarios in my head and reflecting back on what happened last year as this was the week I got diagnosed.

I hope it goes well for you.

Kat x

Hi girls.Quite new to al this forum stuff.After a long wait from january this year when dcis was mentioned and scans biopsy etc to confirm the extent of the condition ihave been told that “treatment of choice” is mastectomy with immediate recon for the affected side.had a period of a few months waiting to check out the other side so the outcome could have been worse.Most people sem to accept that i am having preventative surgery but cant get their heads round the extent of the op needed.Am taking things one step at a time as each appointment will give more info depending on results and this stops me imagining worst case scenario only. have been told they will do sentinel node biopsy at time of op as breast surgeon not looking for any problems.Should have the op within next 4 weeks.Ok at mo but not sure how I’ll feel by the time it comes around.Just got to trust the docs to make the best decisions based on each individual case I suppose.

Hi all , I was DX in Aug O7 after a mammo 5 core biopsies I was dx with DCIS A wle was advisedv first but after further xamination and an MRI a mastectomy,was done on my right breast… a WLE by the guide wire to my left and as I am too skinny for recon with my own tissue I had an expander fitted that was inflated over a period ofthree months until I had the perm implant and uplift in Jan O7 … No rads nor chemo just straight on Tamoxifen … with all its side effects as I am ER … I do occasionally wonder what the chances are of a recurrence as I would prob not know as I had a negative mammogram it didnt pick up anything …Although I had sentinel node biopsy I cannot honestly say that I dont think bout it coming back … I asked the doc cos I was feeling very lumpy etc and he said if it had returned after 7 mths it would be undetectable so to put it out of my head I go back to have my recon finished in July and an ultrasound In Oct which will be a year ,So I am notgoing to let it rule my life …wht happens happens …to all those around me the fact/ that I never had chemo seems to make people think that you didnt really have proper BC …so you should get over it …but it isnt that easy is it ladies xxxxxxxxxx thank heavens for tjhis site it has kept me sane xxxx

Hi girls i can remember telling my line manager about the cells being precancerous and she said"its better than cancerous then" but I think she is only realising now what the outcome in terms of surgery is for me.other tend to overrreact and say things like “arent you looking well” and seem to think that i should be looking ill.Difficult to give the right level of info to everyone and I tend to find that they cant quite get their head round needing such a big op if it isnt a lump or a tumour.Obvisly no 2 people are the same and we all have different treatments at different times but can all be asupport to each other in some way.

It just goes to show how many variants of BC there are. I know what you mean about when people meet you. They have expected me to be emaciated and grey. Instead I feel physically good now that I am recovering from radiotherapy. Still a bit tired, but nothing much.

However, DCIS is cancer, whether we like it or not. Ok, it hasnt yet invaded the breast tissues, but would likely to do if left alone. For those who have widespread DCIS , they need a mastectomy which someone who has a low grade invasive cancer doesnt need. So like you say, Doreen, ops can be big. I think of it more as very early cancer which was thankfully caught in time. I still will be looking over my shoulder so to speak like everyone else and dread the annual mammograms too.