I was diagnosed (I’m 49) with DCIS, via mammo, ultra sound and biopsy, Oct 2012 . Surgeon recommended standard treatment of WLE and radiotherapy for 3 weeks, then Tamoxifen for 5 years.
The world had stopped for me after diagnosis and I found it hard to deal with anything, I went to pieces. After reading this forum and gaining more insight into others experiences and treatments, I asked for masectomy. Mainly because I knew I wouldn’t be able to cope with the stress if they couldn’t get clear margins with a WLE, then more surgery and waiting for results again etc.
The surgeon was lovely, and agreed to a masectomy. All went well, and 2 weeks later, the preliminary results were back. Sentinel Nodes were clear and he got the 2 tiny areas of DCIS (0.5mm and 3mm) that had been identified, - as I’d had a ‘marker’ put in at biopsy. What good news, what a relief, we celebrated with champers!
A week later, surgeon told me that the full results were back and another area of DCIS had been found by the path lab. A further 10mm of DCIS had been lurking in there undetected. This had been completlely missed via mammo and ultra sound scan! I can’t help but think that sometimes you just KNOW the right decision to make, even under such stress.
Of course, masectomy is not everyone’s choice , but I can’t help thinking I’d made the right choice for me.
Jacx
Well Done Jacx on getting the treatment you wanted and did need ! I had no choice of a lumpectomy as my cancer was 4 to 5 cm so I had a mx in July 2010, then Chemo and now on Tamoxifen. I had immediate reconstruction as well. I hope everything continues to go well for you. Love Tracy xxx
Hello Jacx, so sorry you’ve had to join the club but I’m convinced you’ve made the right decision. I am 66 and on August 20th I too had mx after having prognosis of DCIS, 5cm high grade, not from mammo, but I had slight blood leaking from my nipple. I’ve been luck as after SNB was diagnosed as being clear so no treatment, but decided to have immediate reconstruction after mx. I wasn’t able to have tummy reconstr. so opted for LD flap. That was 15 weeks ago. It a long old recovery but each week is getting better. Be brave Jacx, we are so lucky to have all these clever people to guide us and advise us what to do. You will get there believe me. Big hugs from Kathy xxx
Hi Jacx
I hope you are recovering well.
I just wanted to tell you that your post was helpful to me. I have just visited the surgeon and been told that on balance of probabilities WLE will be appropriate to treat my DCIS, but it just doesnt feel right to me for some reason and I am thinking of opting for the mastectomy with reconstruction. Was worried though that I was over-reacting. Reading your post has been helpful - sometime you just have to go with your own gut instinct.
Thank you
Em
I’m also in the same position my DCIS can be removed with a WLE but I want to be sure and have opted for a Mastectomy. My surgeon isn’t altogether happy with giving me a mastectomy as he feels its too much for my DCIS but I want to be sure it’s gone and for me taking control of my treatment helps me cope and deal with what I have.
I am having a strattice breast reconstruction on 3rd Jan and am happy that i’m making the right decision.
Posted on behalf of new user Viv - Jo, Facilitator
I was diagnosed with high grade DCIS two weekks ago and have been very undecided about which course of treatment to take. After reading your comments I have decided that the mastectomy is for me. Thank you for your help.
Hello ladies
This is of great interest to me.
I was diagnosed with High Grade DCIS 8mm on 22/2 (I’m 48 yrs) and had WLE but failed to get a clear margin on one side and told it was 16mm. Just had 2nd WLE on 28/3 and now waiting for results on 15/4 which seems a long way off at the moment.
Mum and maternal Grandmother both had BC, Mum diagnosed at 40 yrs with a small lump - had lumpectomy and rads but no other treatment. She died at 53yrs from secondaries in her liver. Grandmother was diagnosed age 70 with breast lump and widespread secondaries in her stomach & liver.
I was not given the option of mastectomy and told they don’t test lymph node (other than ultrasound) as it’s non invasive. I feel quite worried that they may not remove it all and I’m also not sure how much my family history has been taken into account…
Ah well, if they haven’t got clear margins this time I’ll have to consider mastectomy as there won’t be enough tissue left anyway.
Feeling mostly positive and doing daily yoga (gently) and meditation to try to stay that way but the waiting is so hard.
I have been advised that I can ask for a referral to the genetic clinic even though my Mum and Gran have died and I don’t have children. Wish I knew that before I was diagnosed but the family history screening programme has never suggested it. Just had mammograms every 18 months…
Hi all
I have had a lumpectomy to my right breast and tests show clear margins so advised to hae radiotherpy. However when I went for my initial results, had pain in left breast and to cut a long story short, when this was removed (at the same time as my lumpectomy) it has come back as another DCIS but only 0.5mm clear margins, So…my options are further lumpectomy and then radiotherapy to both sides, or a single ot even double masectomy. The surgeon suggested the masectomy to avoid radiotherapy but the breast care nurse seemed to be indicating that this was a bit drastic. I have seen the other posts here, but I don’t think I am ready for a masectomy, so think I will have another lumpectomy, and if he worst comes to the worst then will have a masectomy. Sounds like I am sorted but still very confused. Think I would feel different if no clear margin. What do you think?
Hi Paula,
I have just pasted this thread to a newer/ active thread on the site.
breastcancercare.org.uk/community/forums/dcislcis/3-wles-now-mastectomy#comment-2122044
How did your lumpectomy to your left breast go? Kathy
Evening all
This is my first ever post! Found out today I have high grade DCIS in 2 locations in 1 breast so was given option of WLE or masectomy. Opted for WLE before Xmas as felt it kept my options open - can always have masectomy if margins are not clear. Not so sure now that I’ve made the right choice! Reading your posts have made me realise it’s probably a bigger decision to get right first time than I realised. Thanks for the opportunity to read your thoughts I will try hard to not worry too much about my decision at 2:00 in the morning (a time I am seeing too much of at the moment!)