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Hi I’m new to this group and would welcome advice to help me make a choice! I had 30mm invasive cancer removed via lumpectomy ( lymph nodes all negative)and then had a re- excision as there was DCIS in margins! Yesterday I was informed that there’s still DCIS in margins and given choice of a further re- excision or mastectomy with reconstruction! I’m gutted as I was really thinking all would be fine after re- excision and I would be moving on to radiotherapy alongside hormone therapy treatment! Now I’m a mess and keep fluctuating between both types of surgery! I just feel so emotional! Can anyone advise me?
Hi. Welcome to the group! I haven't been in the same situation as you as I had to straight to mastectomy with reconstruction. But for what it's worth I think I would now opt for mastectomy if I was in your shoes. Then you know they have it all.
I had a DIEP reconstruction, not without problems - see profile, but the new boob does feel natural. The LD flap is also very good and has a quicker recovery time. And a lot of ladies are very happy with implants.
What a blow though when you thought you had it all mapped out! Cancer is like that and the curve balls catch us by surprise.
Hugs and hope you can make your decision soon. (I hate it when they give me a choice!).
Oh my goodness- I’ve just read your profile and you’ve certainly been through a lot! I’m so torn between giving the wide local excision one more go and then having a mastectomy if that isn’t successful or going straight for mastectomy now! Spoke to BC Nurse earlier and she thinks I should meet with the consultant who does reconstruction and discuss pros and cons , then make my decision! Have hit appointment with her next Wednesday! A big part of me really wants to keep my breast but then I don’t know how I would cope emotionally if margins weren’t clear after a third op!?
Everyone keeps telling me I’m strong- and I usually am but I just don’t feel it currently! I’m struggling being off work ( I’m a primary school Headteacher) and yet I can’t focus on things at all!
You are amazing the way you’re coping with all that’s happening to you! I need to try to be more positive! Easier said than done though!
Thank you so much for replying to my post! It helps to get the perspective of someone who has first hand experience of BC!
Sending you hugs and good wishes for the future!
I was diagnosed in August last year. Had a Wide Local Excision in September with no clear margins then a further re-excision in October. Unfortunately no clear margins again so was recommended to start Chemotherapy as 3 lymph nodes involved. After Chemo it was going to be Mastectomy with immediate reconstruction. At my appointment to discuss surgery, my surgeon said he could do another re-excision which came as a surprise to me but I was advised that if that wasn’t successful then it would be Mastectomy. I think they try and preserve the breast as much as they can if possible. I had this done in April this year and thankfully got the news that the cancer has now been removed. It’s a difficult decision to make and you have to decide what’s best for you I just decided to go on the advice of my surgeon. I had some lipofilling done as by 3rd op quite a bit of tissue had been removed but I am happy with the results.
Wishing you well with the rest of your surgery and treatment.
Hello LH60 i found myself in exactly the same situation as you and its a tricky one.
I can't advise you what to do, just like no one could advise me, because at the end of the day you have to make the decision but also remember it was the right decision at the time.
Can i also say that my cancer was triple negative and not hormonal like yours.
I had a lumpectomy in January and when the results came back i didn't have clear margins, there was a 1mm cancer showing and a DCIS. I was told i could have another lumpectomy or go straight for a mastectomy. After hours of wondering what was best, i decided to go for another lumpectomy. I was absolutely devastated when i again didn't get clear margins. They found another 5mm and more DCIS. Within 2 weeks i was in having a mastectomy with immediate reconstruction. I am 6 weeks past that now and last week was given the all clear.
When i think back i'm not sure i would have done it any different because if i could have kept my original boob it would have been worth it. The only thing i feel i have lost is time getting rid of it.
Results after my mastectomy were it was the best thing because they found more cancer, more DCIS and a lymph node with cancer in it which now have all gone.
But please remember we are all different and all treatments work differently for different people. You need to decide whats best for you, not anyone else and once you've made that decision remember it was the best one.
Please talk to me if i can help with any questions at all.
It's gonna make us who we are, it's written in the scars "The Script"
I sympathise, you have a tricky decision but need to go with your gut instincts in the end.
I had stage 2 invasive but no nodes involved and in the end, after the op when totally checked, some DCIS around it plus some small areas of calcification, and because of where it was, a mastectomy was just the best solution. But I wanted to have some sort of boob to wake up to, so my surgeon suggested a skin sparing mx and implant. I was lucky in that a skin scrape was possible and I am fairly happy with the result, I’ve a good cleavage if I wear a lowish cut top but do need a slightly padded bra as they are sisters but not twins!
Good wishes with your decision, remember you are a statistic of one, and the surgeon will be guided by your wishes.
Thanks for your response- it’s exactly right when you say it’s my choice! I’m just fluctuating all the time between both options!
I have an appointment with surgeon who does mastectomies with immediate reconstruction next week, so maybe I’ll be clearer and more able to make an informed decision after that!
I’ve been struggling emotionally and so, even though I’d really like to try one further re-excision, I’m not sure I could take another failed op! I’m also aware that my boob is already quite distorted after two ops and will probably look even more so after a third!
Are you pleased with results after reconstruction? How painful did you find it was compared to lumpectomy?
LH60 have you not been offered any kind of reconstruction if you chose to have another lumpectomy?
I was told that if my second would have been successful my surgeon would have used the fat just under my boobs, my middle tyre, to fill in the space left from the lumpectomy.
I had an immediate reconstruction after my mastectomy using the muscle from my back. One of my biggest fears was to wake up with a boob missing, silly when you think all we have been through but thats just how i felt.
Straight after the mastectomy my boob didn't hurt at all, they cut through the nerves so its a bit numb. I did have a bit of pain in my back from where they had taken the muscle but it wasn't anything that wasn't solved with pain killers. It felt more stiff, someone described it to me as if you have a broom handle fastened to your back, you want to bend but you can't not for the couple weeks anyway. The drain was more of a nuisance than anything else.
I'm happy with the results although my new boob is smaller than my old boob but this isn't noticeable when i'm dressed. I go back and see my consultant again in November to discuss making them even.
I cannot help regarding the lumpectomy as I was only offered a mastectomy. Original diagnosed with DCIS high grade and spread over a large area. They said a lumpectomy would make my breast very out of shape. I went ahead with the mastectomy back in January 2019 and at the same time had a skin-sparing mastectomy with implant reconstruction with the view to have a full reconstruction at a later date using fat from my stomach.
Once the breast was removed it was tested and a stage 2 cancer was found but nothing in lymph nodes and was HER negative so lucky for me I did not have to have any chemo or radiotherapy.
I was very nervous about having to have such a operation but the pain after was short lived and I think it was a small price to pay for getting rid of the cancer. Had I not had the breast removed then my situation could have been so much different now.
Its is hard when you are given options to which direction to go. But you most never be hard on yourself for whichever direction you take. Its all doable and before you know it it will be all behind you and you can live life to the full.
I do have to decide now if I want my implant removed and have a full reconstruction but for now I am happy with what I have got. With cloths on no one can tell. Without cloths on is a different matter but then its got to know that the cancer has gone.
i was only really offered a mx due to previous cyst and lump excisions (years ago they did remove cysts) and also where the cancer was in the breast.
I knew I wanted some form of reconstruction and due to my age and concern about the length of op and risks of two incisions, also that other ops might not be able to be done at my hospital, I wanted the cancer gone! So opted for the permanent implant, which my surgeon was happy to perform. I didn’t need chemo or radiotherapy.
Pain-wise, my team used a drip feed of local anaesthetic into the wound, which lasts a day or so, after that all I needed was regular paracetamol (and lots of rest)
I was in exactly the same position as you and it’s so hard to decide what to do! The MDT decided that an Mx rather than a 3rd excision was the best option for me although if I insisted on a 3rd then they would go along with that. I opted for the mx with immediate reconstruction with implant as I wasn’t sure I could face a 3rd failed excision. In hindsight I wish I’d had another go. However I’ve just had my 1st anniversary check up and all is good.
All the best with whatever you decide xx
Thanks for your reply! I’m seeing surgeon today to discuss mastectomy with reconstruction! I’m probably verging on going down that route as I am not sure I could deal with a third failed excision!
Just wondering why you say with hindsight you wish you had tried for a third time?
Thanks for sharing your experience! Hopefully I can make my decision after a consultation with surgeon who does mastectomies with reconstruction this morning!
I’ve been so torn between both options! My emotions are all over the place and I really can’t carry on like this! I’m hoping a decision will help!
Wishing you all the best for today.
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