Breast Cancer Now Forum

Hi Coralie - apologies I have only just seen this post . I was diagnosed with bi lateral cancer grade one in one breast & dcis in the other . I was initially shocked & wanted to have a double mastectomy but was carefully guided by my consultant that due to low grade it was probably better to try & save my breasts . I followed her advice & have had two wide local excisions & they got clear margins each side . I am now about to have radiotherapy . So I can't help with the mastectomy question but wanted to let you know my outcome anyway in case it is something you may want to consider ? Xxx ... View more

Hi Jo - just wanted to say hello again & wish you good luck for tomorrow having your drains out & getting your results !! I went to see my surgeon yesterday to confirm my double mx with her & she threw me a complete curved ball !! She told me she had studied my pathology report again & had discovered that she had made an error regarding the size of my DCIS . Instead of it being 3cm linear measurement it was 3cm vertically making it a 1cm cube so much smaller than first thought . As such her recommendation for an mx on that side no longer applied . She is confident that she can remove this hopefully with clear margins & an uplift of my breast to ensure minimal deficit in the breast . My right breast which has a 15cm tumour she has always said can be removed with lumpectomy & radiation afterwards but as I was going to have one mx l had decided to have both done for symmetry & peace of mind. She has talked me into having surgery on 22nd September on both breasts using wide local excision & treating it as another type of biopsy in order to try & save the breasts should all go well & I don't need any further surgery I am happy with this cautious approach for now but if there is any need to go back in for further margins or an unexpected deficit then I will be going back in for a mastectomy . It potentially means more than one operation but she has advised caution due to the low grade & small Sizes of my DCIS & tumour . This is like a game of Russian roulette as you never quite know if you are doing the right thing but this way I do get to have the pathology results and then make a decision whether or not I can live with the boobs staying on or not Linda xxxx ... View more

Aww thanks Liz - I will look in the Internet to see if I can find some bags . I am really nervous but I want to do all I can to reduce my risks moving forward so I am really considering the double mastectomy to reduce operations in the future hopefully !! Thanks for your support keep in touch Linda xxxx ... View more

Hi Jo- I live near Chester so will be having my op at the local Chester Hospital. The drains sound hilariously long & I can see why people complain about them. Would be very interested to hear where you got the drain bags from as I imagine they are a necessity just to move about !!! I think I have pretty much made my mind up to be brave & go for double mx fur peace of mind moving forward then at least I will feel that I did all I could to limit the risk . I am older than you but like to think I am a young 58 . All my friends were completely shocked when I was diagnosed as they see me as super healthy & fit so I hope that works in my favour !! I have only one grown up son who lives with his partner & a very supportive husband . We are both retired from work so I should have a very relaxing recovery . I am interested to know how you even get yourself out of bed as lifting yourself up on your elbows or leaning forward to move must be very painful . I have bought myself a V shaped pillow so I can prop myself up in bed did you need to sleep sitting up and if so for how long ? One of my surgeons also told me I would never be able to lie on my front as it wud be like lying on two beach balls 😂 😂 and said that the finished breast would feel like my knee cap - very cold & hard ! Have you received similar encouraging information !!! 😁 😁 Linda xxx ... View more

Thanks Liz- good to hear your positive approach to the surgery I am dreading it but want to move forward & reduce all risks so it is a must for me I think - I just get scared when they talk of the complications with the operation & the risks . Regarding the bags what sort of size do these need to be please ? Did you out the bag just over your shoulder ? They a good idea rather than have them trailing everywhere . Linda xxx ... View more

Thanks Jo for your continued support - great to hear your drains are being removed I hear this is a real necessary evil but very bothersome . How are you feeling now after your op ? You seem very up beat so a real inspiration for me on the cusp of the same surgery . Fingers crossed for your on going treatment & great to have a surgeon that you are really comfortable with . What part of the country do you live in ? I had an MRI scan last week so hoping that will shed some light on the LN issue before my op . Keep me posted how you get on please ? Linda xx ... View more

Thankyou Liz - I will do . I go to see my consultant on Wednesday this week & my operation date is currently on 22nd September . My guy tells me to go with the double mastectomy to reduce the risk so I will just have to be brave . I need to speak to them about the radiotherapy though . Thanks again Linda xx ... View more

Hi Liz- I forgot to ask you did you have any sort of radiation treatment after your silicone reconstruction ? I am having my lymph nodes checked at the same time as my surgery & although my tumour is low grade they will only make a decision on the need for radiation after the biopsy results of the tumour & lymph nodes a week or so later . I hear that radiation treatment can cause disruption to the implants as it shrinks the skin . Linda xx ... View more

Hi Jo - I forgot to ask you did you have any sort of radiation treatment after your silicone reconstruction ? I am having my lymph nodes checked at the same time as my surgery & although my tumour is low grade they will only make a decision on the need for radiation after the biopsy results of the tumour & lymph nodes a week or so later . I hear that radiation treatment can cause disruption to the implants as it shrinks the skin . Linda xx ... View more

Noted - and I agree there are no guarantees but presumably more peace of mind moving forward Thanks for posting so good to hear views from those going through the same thing xx Linda X ... View more

Hi Liz - thanks for this post - I am keen to gather as much info as possible in order to make an informed decision . I am scared of the scale of the operation so it is good to hear your practical view on one mx at a time . I am moving towards having an mx on the DCIS side as I feel there are many unknowns & it is so hard to spot or feel should the remaining tissue after a WLE break out of the ducts & become invasive in the future . I am concerned with having a mx on my right side with immediate reconstruction as they suggest radiotherapy if it has spread to my lymph nodes which would damage the implant . So I may very well have the lumpectomy , radiotherapy & hope to have the mx in the future if the skin allows . So pleased people take the time to share experiences as this is such a terrifying time making life changing choices ! Linda xx ... View more

Hi Joan - thanks for your reply ! I have never had surgery so was concerned about the scale of the operation and if I would hate the results and yearn for my boobs back ! I have been told it is extremely painful with even difficulty and pain breathing as the rib cage goes up and down . You are only a week down the line and seem happy . Did your surgeons try to talk you out if the double mastectomy ? Do you feel a real tightness across your chest ? Are you happy with t he results ? Sorry to sound so paranoid but I am trying to gather as much information as possible not knowing what to expect Thanks Linda X ... View more