Hi
I have High Grade DCIS, and so far have had two WLE, I am due back tomorrow (26/07/2017) to see the consultant, but I am absouletley pertified that will tell me that the margins are still not good, and then to have another operation, which to be honest I just cannot take. I have a family history of BC, with my sister passing away 15 years ago from secondary.
Has anyone of here had to have a 3rd WLE, and what happens if this does not work? They advised me that I may need a 3rd.
Oh you poor thing!!! It’s bad enough going through it once .Yes ,I know 2 ladies very well who had to have 3 lumpectomies ,it’s soul destroying isn’t it ,Hopefully you won’t have to go though it again .They surely couldn’t possibly not get clear margins a third time ?You need to ask them these questions tomorrow I guess .Ive never heard of someone needing 4!!
Hello, I’ve just joined this forum. I’ve had two WLE and last week my consultant has advised me that there are still no clear margins and has advised I need a mastectomy. I’m 36 and was diagnosed on 28 June this year. It’s been really hard and this is ultimately the thing I feared most but I guess we have to do what is necessary to get healthy again and rid ourselves of this horrible disease.
Sending you lots of love and positivity xx
Hi Gayle ,welcome to the forum .Sorry you having to have yet another op.At least you know there can’t be a 4th !!! Best wishes .Jill.
Hi Kat,welcome to the forum .Hopefully someone with similar experience will be along to let you know about the decisions they made .I do know ladies who have had 3 ops to get clear margins -I guess it depends whether you feel you could face another op if this one is not successful ? Good luck with whatever decision you make .Jill.
It’s your decision Kat,but I don’t think they would recommend mastectomy if they thought there was a good chance of success with another op to get clear margins.If you feel you want to take a chance -it’s your decision,your body -you just need to be prepared to have another op if it is not successful .
Kat you 9bviously dont want a masectomy but honestly i would listen to your team. I was diagnosed with high grade DCIS exactly a year ago. I had a wle and a cavity shave and 15 shots of radiotherapy. Now after my first post op mammo they have found invasive cancer and i am heading for a masectomy, chemo and hormone treatment. I just wish i had had a masectomy last year. Do what you have to do to get rid of whatever is there and give yourself the best chance of avoiding a recurrence. Speak to others who have had the mx and discuss recovery and reconstruction etc. Good luck Kat xxc
Hello.
First of all, big hugs to Ali for being dealt such a blow so soon. I can only guess how devastated you must feel.
Kat, I had a MX from the get-go. I had a 35mm high grade DCIS that was spotted on screening. I was offered a WLE initially, however on doing my own extensive research I asked for a MX. My reasons were this:
My research told me that I would lose circa 20% of my breast through a WLE and would still need some form of reconstruction (LICAP) plus of course, radiotherapy. Going through that, especially the reconstruction part and still leaving a greater chance of recurrence didn’t seem to me to make sense. What would your cosmetic outcome be with another op?
Research again told me that my 35mm was most likely to be underestimated in size and a second operation may be needed if I only had a WLE. My surgeon told me the figure is somewhere between 20 and 30% need second attempts at clear margins. Final pathology showed that mine was nearer 50mm. Imaging is not great for detecting the true extent of DCIS!
The recurrence risk was not one I fancied. A mastectomy has a 1 to 2% risk of recurrence. I understand that with a WLE and for high-grade DCIS, it can be around 10 - 20%. I figured that if you lined up 100 women that I would prefer to be in the category that has a recurrence after every fifty in the line rather than in the one that was every fifth to tenth lady! I would stress that overall survival is equal between WLE and MX. What is your tolerance to risk?
I wavered between the two options many times and really struggled to know what to do but I have absolutely no regrets now. Research was my key to solving the conundrum as I like to feel in control. In the end, I had a skin sparing MX so woke up after my op still having two boobs. Other health issues meant I couldn’t have immediate reconstruction so I needed a space saver implant but my surgeon has done a fantastic job so far in matching me up. It still looks like my boob (minus nipple), it’s just the stuffing inside that’s different or will be once I’ve had reconstruction.
Sorry for the essay. I hope you can get your thoughts sorted out but if I can help any further, please do ask.
Ezzie. X
Hi Kat.
My research was done mainly through Google although I was extremely discerning. Anything that came from dubious sources (in my opinion), I disregarded and concentrated on well-known centres of excellence such as those in the U.K. Europe or the States. I also ignored anything that was more than about 10 years old, since I considered that cancer diagnosis and treatment will have evolved in that time and I also found an article which said that recurrence rates were falling slightly due to modern day practices. I have book-marked about 30 very informative articles relating to my cancer and its treatment. I know many people would not be able to understand me but I have a very enquiring/challenging mind! One of the easiest articles to find is if you Google ‘DCIS recurrence West Midlands’. Please though, do also ask your professional team for their reasons behind their current recommendations.
Regarding my reconstruction, I would not have an implant because I would have never achieved symmetry with it. So a tissue reconstruction was always the best option for me. At the time of my mastectomy, I had another minor condition which meant I wasn’t able to have immediate reconstruction due to the longer operation time. In order to ‘save’ my skin until such time as I can have reconstruction, I have a temporary implant just under the skin. I am scheduled to have a DIEP reconstruction in about two months time at which point the implant will be removed. Once I had made the decision to go down this route, my BC nurse went through the various options and showed me some pictures of reconstructions. I would really recommend that you ask your nurse if you could do the same. I have been amazed at what can be achieved.
Again, apologies for the essay! Ezzie. X
Thanks Schumi. I am glad to hear that you are doing well. You made the right choice with masectomy and i will be asking advice when mine is due. Nearly 2 weeks on from first chemo. Sending you all good wishes for your mammo and i am sure it will be fine so try not to worry xxx