I was diagnosed on Wednesday, and have yet to meet with a surgeon. It’s such a confusing time. There is a lot of information to suggest that DCIS is over treated. Because they cannot know if it will develop or will remain harmless. As a result of improved technology and uptake of mammograms these early stage cancers are spotted. Is a mastectomy, which has been suggested, too drastic an option?
Hi Debra
My feeling was that it was cancer and I wanted it removed - particularly as I was under 50 so I felt that it could have many years to develop. I also decided that the prognosis, with treatment, was good for DCIS so no point waiting to see if it developed (and potentially then being harder to treat). Also I did not want the stress of repeated mammograms, biopsies etc to monitor it - I actually wanted a mastectomy.
I also discovered that the DCIS diagnosis can be deceptive. As I say I wanted a mastectomy (for intermediate DCIS) but was persuaded to try WLE - no clear margins so I did then have the mx which revealed other cells were changing so the mx was the right decision. Less than three months later high grade DCIS found, largely by chance, in the other breast. This time surgeon happy to go straight to mx - which revealed extensive invasive cells (which had not shown up on mammogram/ultrasound or biopsy) so again the mastectomy was the right decision.
It is a difficult position to be in and I hope you get lots of help deciding - make sure you ask lots of questions. If a mastectomy is being recommended there should be a reason (widespread DCIS for example) - my experience was that they prefer to start with wle if they think it will be enough. If you have not already done so I recommend calling the helpline for a chat with someone. There are also some useful publications in the information area of the site.
Best wishes for meeting with surgeon.
I was recently diagnosed with dcis and I’m having a mastectomy on June 15. The reason they gave was it’s a large cluster and high grade so it’s a belt and braces approach. Do you know your grade and size?
My biopsy was terribly painful and four weekson I’m only just healing. They will also take some lymph nodes at same time. I’m paranoid that because I have sensation under armpit that there is also something already wrong there but am assured it cannot spread…
Good luck xx
Hi
And I’m another DCIS to MX… and have angsted about every possible treatment, I’ve run away to Dublin twice, had a second opinion , but now reconciled to having the full Monty. Just don’t think I can risk anything else. All the medics are up front that it might not be necessary, but we’ll never know.
And a long recon op is not without risks…
So all good luck to you both and hope all goes well, Caroline
I was diagnosed with low-grade DCIS on Tuesday. I’ll be having a lumpectomy in a couple of weeks. I was offered a trial in which I could have randomly been allocated surgery or just monitoring but I wasn’t prepared to take the risk.
Hi - I too went through this 12 months ago. I agree, it is confusing but at the time, with the advice given by my specialist and his team, it was a no-brainer to get it out. I had quite a large area of DCIS and my mother had breast cancer when she was in her 50s (I was 48). The most difficult choice for me was whether to have a lumpectomy (lose 1/3 of my breast) or a mastectomy and reconstruction which seemed rather extreme. In the end, due to the excellent reputation of my surgeon and my lifestyle (don’t want to give up on that bikini just yet!) I went with the mastectomy and haven’t really looked back. Every time I feel doubt coming on about the choice I made, I remind myself that I have eliminated the cancer risk in one breast at least.
I feel for you but probably in the 9 days since your post, things are a little clearer for you now. Good luck and speedy recovery should you go with the surgery. xx
Hi, I am having a mastectomy on 13th June having had a WLE previously that didn’t give the clear margin needed. My diagnosis is of intermediate and high dcis. I am hoping that this doesn’t change after the mastectomy. I am having immediate reconstruction so hopefully this will be the end of it.
I will have regular screening on my other breast and I know that if anything is ever found in that one, I will be going straight to mastectomy.
Xxxx
Hi folks
Got my MX date… 22 June, would have been my darling dad’s 100th birthday.
So 3 weeks and counting, will be at Bradford RI which has wonderful wifi so I’ll be fine. Hair cut tomorrow so I don’t have to faff about with straighteners and to keep me cooler while I’m being gently poached, post recon.
So, even more lists, have to stop myself organising a visitors’ rota, and how sad is it that I felt relieved that I’d already sorted my postal vote for the EU Referendum…
Shall I sign off now?
Ok bye.
Good luck Caroluna, I’m slightly before you having mine. I’ll let you know how things go for me and any tips I can give you.
Sending love xxxx
I’m having a skin sparing mastectomy with implant, I will lose my nipple which can be reconstructed at a later date, but I’m not sure I’m bothered about that tbh.
I’m scheduled for 13th June and I just want the date to be here now. I found the lump in February and because of complications after biopsy and WLE, I’ve already had 3 operations and still not got to mastectomy! I’m due my straightforward op with no complications now I think!!!
I too had a mastectomy in Feb due to high and intermediate dcis. No further treatment needed. I am, however having a second mastectomy Wednesday as would have to have significant reduction due to being big busted and thought why not get rid and then never worry about it developing again.
Well I had the op yesterday and it all went well, a lot less pain than I thought. One pain I didn’t expect (and my surgeon hasn’t seen it before) was extreme pain from my elbow to wrist and numb little finger. They suspect my elbow was resting on the ulna nerve throughout the surgery which caused a temporary nerve damage!
Mx wise, it’s been fine though, the recon looks very natural! Good luck for you Caroluna xxxx
I am home now, and honestly Caroluna, post op has been nowhere near as awful as I was expecting! I do have limited movement in my arm, but I’ve got exercises to do to help with that!
You will be fine, apprehension is normal, take pain killers regularly to keep on top of the pain, and listen to your body - rest when you need to!
Good luck and let us know how you get on xxxx
No, as the dcis is pre-invasive, and I’ve had a mastectomy then no further treatment is required. I think if a WLE is performed, often radiotherapy is offered too.
I saw my consultant yesterday, all lymph nodes are clear, there was a 50mm of intermediate dcis in the breast all of which has been removed and so I can now hopefully move forward.
Had MX and DIEP Weds, phew. Had bit of bad reaction to long anaesthetic, bit crazy but op seems to have gone well and hardly any pain so big up for our NHS.