High Grade DCIS

Hi Andrea

My situation was similar in some ways except I also had a grade 3 18mm tumour surrounded by a 6x4cm  mass of high grade DCIS. The tumour was removed on my first op which was a lumpectomy but they didn't get a clear margin on the DCIS. I had two further re-excisions but they still didn't get a clear margin so in the end I had to have a mastectomy. To be honest at the beginning I just wanted a mastectomy in the first place to get rid of the whole thing.

But having gone through lumpectomy and further re-excisions and then to have a mastectomy, I would have preferred not to have had the mastectomy. It is a much bigger piece of surgery as I know you are aware and the recovery is a bit slow, but not too bad considering what you've had done. But the emotional part of having a mastectomy was much harder for me. I was 46 when I had mine. The mastectomy itself was pretty straightforward, recovery a good few weeks but then there's reconstruction to consider. I ended up with an implant which I didn't really want as I'd rather have had a DIEP reconstruction (eventually told I didn't have enough stomach fat....who were they trying to kid!). 

My advice would be really think about what type of reconstruction you may have before you make any decision as I ended up having the mastectomy with an expendable implant, then an op to put in a permanent implant, then an op to reduce the other breast to get a match and I still haven't had nipple reconstruction. BUT of course it does give you the peace of mind knowing that all the breast tissue has been removed. As it turned out in my case when they looked at all the tissue after my mastectomy there was no sign of any tumour or DCIS left so they must have got the lot in the 2nd re-excision!

I was told that high grade DCIS may never actually turn into invasive cancer...they just don't know. But you would be closely monitored with annual checks for 5 years so hopefully that would give you some peace of mind.

Good luck for whatever you choose. It isn't an easy choice I know.  

Jane x

hi Andrea, how big is this lump ?

are you fit enough for another surgery or two ?

I think I'd be tempted to let them have another go at the margin.

my lump to boob ratio was too great for the surgeon to create a good result and it was felt a mastectomy with reconstruction was going to give me a better overall effect. It was a long op and I only had the basic implant and my scar didn't heal particularly well. My 2nd surgery went better and the scar healed quicker. But I had chemo in between the two surgeries.

As Jane says, you'll be monitored now.  And don't forget a mastectomy doesn't take every single scrap of breast tissue, it's not possible, there's always an amount left , so you would still need to be vigilant.

I vote have another go at the margin.

Carolyn

xx

Another plus 1 for margins.  I had my WLE, then margins.  They found more cancer on the opposite side of the margin and then I had to have a mastectomy.  My implants are fab, don't get me wrong, but they have no feeling and I would rather have my own boobs than an implant.  

Give the margin a go.  If they still don't get margins, you've tried.  If they do, win win.  

Go, tell them that's what you want.  

Incidentally, even a mastectomy doesn't mean cancer doesn't come back. It comes back in places other than the breast.  I never knew this till after.  

Hi Andrea. Like you I had High Grade DCIS and didn't get clear margins after WLE. So I had a second WLE.

 With clear margins this time. That was four years ago. Unfortunately my DCIS recurred and I had Mastectomy one year ago. I was told after WLE that there would be a very small chance of recurrence. Maybe I was unlucky.  One year on I am still numb but other than that, which does not bother me,I feel absolutely fine .  Two months after my op I was visiting my daughters in Spain and doing everything I would normally do . I know it is a difficult decision for you and one that only you can make .  Whatever you decide I wish you all the very best.  X

Thank you for your reply..do you in hindsight wish you had just had the mastectomy in the first place? Did it come back in the same boob? Did you have reconstruction at the same time...sorry for all the questions xx

Hi again. Ask as many questions as you lik I don't mind at all. Firstly yes it was the same boob and no I didn't  go for reconstruction .  As for whether I would have gone straight for Mastectomy the second time ? I honestly don't know as  I wasn't offered it at the time,

but having had a near normal boob for three years I am probably pleased I wasn't given the choice. Hope this helps a bit. X

Hi andylue, 

I was diagnosed with 28mm DCIS intermediate grade at a routine mammogram & advised I could have left it & they would check me yearly. Or have a lumpectomy & LICAP flap reconstruction, they did not advise a mastectomy as the area was small & lymph nodes clear. On the day of operation they found 2 suspicious areas & after biopsies these turned out to be a 5 & 2 mm breast cancer grade 3. At the re-scheduled operation they also found cancer in one of 3 lymph nodes removed, so had to have auxiliary clearance at my reconstruction surgery.

 Now I'm in the mist of FEC-T chemo & also got to have 15 sessions of radiotherapy. Sorry to go on but this was an awful shock to me to be told in the very beginning I could have sat on the original DCIS is very scary if this was the choice I had made. You need to be told of the consequences of doing nothing as cancer has an habit of being unpredictable. Find as much information as you can. 

Wishing you the best outcome in whatever you decide & to say like most on this site the treatment is doable. 

Stay strong pink sister.....

Hi there

Very similar situation here too , had invasive breast cancer and when operated on for lumpectomy  found extensive DCIS which hadn't shown up on anything - two margin shaves later and they couldn't be sure they had all the DCIS - apparently that is part of the problem , they cannot actually see it when they are operating so do it with (very good I hope) judgement. I am now have g a mastectomy, seeing the plastic surgeon next week ... It is very difficult to advise on this as unfortunately the specialists themselves don't know. I wanted a mastectomy in the first place but was talked out of it by my BCN ,

Good luck in your decision

Jo x

Hi

I think it's a great idea to get lots of stories to compare and relate to, hopefully this will help you decide. I have had a few 'decision making meltdowns' where I just did not know what to do and had to dig deep and think hard.

My cancer was different to yours in that it was invasive. After mammogram and ultrasound it was measured at 16mm. After lumpectomy it was actually found to be 43mm, and margins were unfortunately not clear. My surgeon did not offer me a further surgery to gain better margins because I had several small little tumours (I think of this like buckshot - they called it multifocal) within the margin originally removed. One sentinel node was removed and it showed metastatic deposit. I had to decide which type of mastectomy to have. 

I personally am very glad that I had the mastectomy because, when the histology came back from the breast tissue removed, it contained a further 13mm invasive ductal carcinoma. This further cancer was not seen on the original mammogram or ultrasound. I feel like I would have been ok for a few years and then I'd have been back in this club again.  I also had an axillary clearance with no further nodes showing metastatic deposit. I'd prefer not to have had the clearance in case it causes me problems in future with lymphodeoma etc but I like the comfort of knowing that nothing else had got through.

I don't envy anyone making these big decisions at all. 

I wish you well x

Agree with other posts. Read up on other stories and then consider what's best for you in your particular circumstances. A mastectomy, with possible reconstruction is a much bigger procedure and unfortunately, as others have said, even this is no guarantee the disease won't recur. I'd probably give the excision another go and, fingers crossed, they get everything out and no invasive cells are found. Best of luck, L