DCIS - can surgery be avoided?

I had both DCIS and invasive BC at the same time, as do a lot of us.  It's also not unusual to find small areas of invasive cancer after surgery in what was thought to be DCIS only. I'd be tempted to follow your surgeon's advice, as it's less likely to return. X

Hi - all I can really say is that for pretty much all cancers the   “Cure” is surgery.  There is nothing in the surgeons or oncologists armoury that will remove it, all other treatment is in conjunction with surgery. However there is some research that DCIS may be over treated , and a watch and wait scenario would take place (my husband has prostate cancer and this is the route he is on ) but I don’t think there is any way at present of monitoring DCIS ? 
Is there a reason you don’t want surgery ?

Jo x

Hi

I had high grade DCIS and was told that high grade is the most likely to develop into something worse. I was told surgery was a must - no wait and see at all. If you are lucky you will be able to have a lumpectomy. Unfortunately mine was 5cm so I had to have a full mastectomy with immediate reconstruction. I also didn't want surgery but...... you have to take the advice of the experts. DCIS is very treatable with a good outcome. 

Yes, I'd need a mastectomy because the DCIS is over a large area, which I'd like to avoid, if it's possible to monitor harmful changes. I'm curious about this article on over treating DCIS

www.mdanderson.org/.../weighing-options.h37-1592202.html

How did the mastectomy and reconstruction go? I'm very anxious about surgery... 

Oh, I see. Thanks. 

Yes, I'm curious about this approach but it's in the US, not UK:

www.mdanderson.org/.../weighing-options.h37-1592202.html

I would have loved to have avoided surgery and done that but wasn't given an option as I was told it was too risky. It certainly would be the cheaper option as so far I have had a 2 biopsies, sentinel node biopsy, mastectomy with immediate reconstruction, nipple reconstruction, nipple tattoo and 2 revision surgeries which were both liposuction and refill to areas. I started this process in October 2017 had DIEP in December 2017 and had second revision surgery only yesterday at St Thomas' with the possibility of maybe yet another one. Plus all the outpatients appointments etc etc So far, I have cost the NHS thousands for which I'm extremely grateful and so far have had a positive experience. But......., if I could have just a mammogram every 6 months and watched and waited I would have jumped at it like a shot. I had to be dragged virtually kicking and screaming down the surgery route.Before all this I had only ever had a C section. I had never broken a bone or had any illness apart from the normal colds etc. I would have done anything to have avoided surgery. Is it over treating? I don't know, certainly a few ago it wouldn't have been spotted and if it hadn't developed I would never have been any the wiser. But, if it had it would have been a more serious issue to deal with. Maybe in the future such things could be offered but when I started this journey I was told it was far too risky to do anything else but have the surgery. XXXXxxx

Please don't hesitate about the surgery. There was a lovely lady on here called and something had once happened in her family involving surgery and she was adamant she could not go through surgery. There is a very long thread on here somewhere tracing her refusal of the surgery and the other methods she went through to try and get rid of the cancer.

I actually met her at a meet up of the AWAKE thread, she was lovely and funny and bubbly. And yes you have already guessed the end of this story. She died of the cancer, years before her time. I can see her now at that meet up and she should be here still enjoying life.

I know the thought of the surgery is awful, but please do it. The reconstructions are fab and what really does it matter compared to your life xxx

Hi Ebb,

I’m in exactly the same position as you. I have widespread 11cm of high grade DCIS and have been told mastectomy is the only option.

I have read every research paper I can find on the subject and had a 2 hour meeting with the consultant two weeks ago and have another one next week to discuss it further.

I really wanted a wait and closely monitor for a year approach and was prepared to pay for it privately but was told by my consultant that she could not support me in that. She felt that there is a good chance that there will be small pockets of invasive in there and that it WOULD develop into invasive cancer at some stage etc. and therefore it could spread elsewhere.

From what I have read and after asking the BCNs and the consultant to point me in the direction of good research, I believe there are no studies that have been carried out on leaving high grade DCIS as it’s considered too risky to leave. There is a trial currently ongoing leaving low grade DCIS and watching and waiting.

I too don’t want major surgery with what I see as life changing consequences for something I can’t see and had I not gone for screening would not know was even there.

It’s a real tricky one and I’m struggling with it, I’m still mulling it over. The BCN has organised for me to see their psychologist which may help, perhaps ask what your BCN can offer you. 

I asked to see all the mammograms and the pathology reports because I didn’t believe them and the consultant did go through it all and explain why she was recommending a mastectomy which did help a bit because I could see it.

I understand you are entitled to ask for a second opinion so speak to your BCN, they are really good and very helpful.

Do question everything. I went to my appointment with the consultant with 6 A4 sides of questions( having read so much). I also insisted my husband accompany me and he was able to write down the answers and ask other questions as they came up. I was in complete meltdown 10mins in having been told it was throughout my right breast and had I been alone I would have walked away from the consultation not having been able to have those questions answered. When you’re in an emotional state you really don’t take in what is being said and it’s really hard to remember things.

I found a really good list of questions to ask your consultant about your DCIS on cancer.org the American cancer society site.

Good luck, sending lots of supportive vibes

. Let me know how you get on.

Susie x