DCIS

I had DCIS earlier this year. I had a mix of low, med and high grade cancer.  This was on two sides of my left breast. My surgeon in Edinburgh was excellent and did 2 wide area incisions so no mastectomy was needed. I also had 3 weeks of radiotherapy.  

mine is low grade and 5 cm liasen and they suggest a mesectomy.  

Seems a bit extreme.  Did they not give you an option?

No got as far as going for the op then asked the surgeon why I was not offered a lumposcopy just before going in to the operating room The surgeon said  we will try you on leronzal hormone tablets for 15 days and sent me home. When I saw them again I said the tablets were making me have insomnia one of the side affects the surgeon stopped them then said again about a mastectomy.  But there was no harm in me going on another tablet for 9 months.  Am due to have the op soon but feel I don't really want it because it is low grade.the liesen is 5cm. I was diagnose in July and we are now in November and they have let me go all this time before having the op does that tell you my case is not as serious as other proples or they would have insisted me having it as soon as possible?

Do you have a breast care nurse? They’re usually excellent at giving answers to anything you’re not sure about. Can you take someone with you in case you get confused by any of the info?  Your story does seem a bit odd to me.

I had high grade11mm dcis. I had lumpectomy and radiotherapy.  No hormone treatment 

I think it’s to do with the size, my understanding is when you get to 5cm or more there could be poor outcome aesthetically, plus they may actually find more when they operate. How do they know it’s 5cm? Size of breast matters though, if you have large breasts then lumpectomy could still be an option.  From what I’ve read and my own experience it’s common for size of lesion to be underestimated due to fact it can’t be seen on scans etc. Hormone tablets, think they’re to inhibit growth, but thought they had to test to know which ones to give you. What procedures / Tests have you had. ? As you have low grade dcis I think you should fight all the way to be monitored for now, insist they tell you everything they know so far, and exact why they think mastectomy is necessary. They may be the experts but it’s your body. I wish you Good luck. 

I had a lumpectomy 2 years ago for 10mm DCIS low to intermediate with some comedo necrosis. I was told it was 30mm and my breast would have the possibility of  a considerable dent. I was also told I could have a mastectomy.  In the event it was only 10mm and I was told no further treatment needed just yearly mammograms. This year I had another lumpectomy for Grade one ER+ cancer discovered at mammogram and about to start radiotherapy. Have started tamoxifen. Again I was offered lumpectomy but could have had mastectomy. 

It is probably the size and position that influence the surgeon's advice. You can ask for a second opinion. Have you had a chat with your GP about how you feel or as has already been suggested, the Breast Care Nurses.

Hi

The operation/treatment depends on several factors.  Size of your breast being the main one in relation to mastectomy vs lumpectomy, but also where it is.

 I had 15mm IDC grade 2 and then 2 areas totalling 54mm of grade 3 DCIS.  Luckily for me I am (was) a 36D and my surgeon carried out a lumpectomy.  I had 80mm cut out and although I have a large dent, they went in from the left and the dent is there, so in a bra it isn't noticeable that I have this dent.

The biggest thing with DCIS is the difficulty in getting clear margins, I gather.  For me I was lucky, but if they don't get clear margins around the area of suspicion, then they have to go back in again.  It may be for you that (a) your breast isn't large enough to do breast sparing surgery - they do try to save it in as many cases as possible (b) the area where your DCIS is, is difficult for them to save your breast (c) they might be worried that they can't get clear margins.  As has already been suggested, do ask your breast care nurse/surgeon why it is they feel that mastectomy is their preferred course of action.

I can remember reading the booklet when I was called for my first ever mammogram and I read about DCIS saying that there are benefits and disadvantages to mammograms.  I can remember reading that some women are diagnosed with DCIS and have operations which may have been unnecessary as it may not ever become cancer.  When I read that, I nearly didn't go for my mammogram as I'd had such a rotten decade with so much going wrong for me (parents illness and then death, hours cut at work, partner of 11 years leaving etc.), that I remember reading it and thinking, 'it would be just my luck that I'd be in the "some women..." category.  A friend told me that I'd be daft not to attend, so ... phew! I did go. For me... luck or not, I had no decision to make as I had the tumour as well as the DCIS and the DCIS was grade 3 anyway. But, you must assume that your medical team are making recommendations based on their knowledge of seeing 1000's of women with BC/DCIS.   

Think about how you would feel in years to come if you did develop BC when you could have avoided it by having the treatment. 

Having non life threatening DCIS in comparison to being told 'you have life threatening cancer' you may find a huge difference mentally.  I am such a down to earth person and having nearly died at 17 in a road accident and counted every day since as a plus, I never thought I'd find it so emotionally difficult to cope with  - I really shocked myself by how hard it was to come to terms with and the fear of it coming back is something that an awful lot of people struggle cope with.

I met some ladies in radiotherapy, who'd had DCIS with a lumpectomy (wide local excision), so I'm guessing as you didn't mention it they were thinking that your wouldn't have radiotherapy with a mastectomy.  If you were able to have a lumpectomy, then radiotherapy would be more than likely for you.

You've mentioned the hormone tablets, so I assume they have diagnosed your DCIS as ER+?  There are so many different types of cancer / DCIS.  I had ER+ tumour, but ER negative (ER-) DCIS.  Treatment plans always go by the tumour, but if I'd just had DCIS then hormone tablets wouldn't be of any benefit.

I guess these are the questions to push your team for.  If you decide to not go ahead with the surgery, would they do radiotherapy? would they put you on hormone tablets? (if you need them),  how often will they check to see if the DCIS is worsening?  The decision is yours and I must admit, I know I would feel the same as you, having read the brochure when I first got my invite, that it is very hard to lose your breast for something that 'may not turn into cancer'. But equally - it could!

It really is an awful position to be in and I do feel for you.

Kindest wishes,