Just wanted to wish you luck for next week . Im recovering from my diep which I had on 5th Dec . I made my decision like yourself after reading as much as I could . The decision was right for me and Iv been given the all clear and no further treatment required . Ill be interested to follow your progress . Take care Steph x
Hi Coralie, please, please don't rush your deciison regards reconstruction. I was diagnosed with DCIS in October had a WLE in November but they didn't get clear margins. I decided I did not want a cavatity shave as the surgeon said he could not guarantee clear margins. After doing an awful lot of research I'm having the DIEP next week. I've decided on this type of reconstruction because I really do not want an implant, mainly because I don't want to be going back in 10 - 15 years to have it replaced. Don't be rushed by anyone into making your decision take all the time you need. I was also given the option of a "dermal sling" reconstruction which I had never heard of before, I must admit I was quite tempted but stuck with the DIEP which everyone says is the gold standard of reconstructions. Good Luck.
Hi again Coralie,
One bit of advice I can give you is do not feel pressured into making a decision about the type of reconstruction. When I was given choice the Surgeon gave me the info and an appointment to go back in a week with my decision. I felt overwhelmed and it was the breast care nurse who said I could take as much time as I needed and to get a later appointment if I needed more time.
It is interesting reading about the bleeding you had, can I ask how long it went on for and if they were able to take a sample to check under the microscope? I was told the same about what might of caused it, but nothing showed up to explain it. My thought is that even if I have more DCIS it is not going to kill me and if anything invasive develops it will get spotted early as I am having yearly checks. Hopefully it is nothing at all:)
I am sorry to hear you now need a mastectomy, hopefully it will all go smoothly for you whatever type you decide on. Also you know there will be lots of support and advice available from Ladies on here who have had a mastectomy:)
I was treated in the past and managed to avoid a mastectomy, but have to say I sometimes wish I had chosen to have it when offered as I have had ongoing issues with pain and more recently bleeding from the nipple ( which has stopped) I have had scans and everything shows as clear. I accept that the scans are okay and am trying to forget about it. What really confuses me is that I have been told by a Consultant that no treatment is given for low and intermediate grade DCIS anymore, which I am sure is not right! (I know there is a trial, LORIS, which is looking at the possibility of omitting treatment but it will be many years before the results of the trial are available) Sometimes I think they just say things hoping it will make you feel better, when actually it is just totally unhelpful!
It would be so much better if there was a clear countrywide protocol for dealing with DCIS of all grades and that we were all given clear and concise reasons, including appropriate statistics to assist in decision making.
Another area of concern is that there does not seem to be a way for surgeons to determine the extent of DCIS, it would save a whole lot of trouble, worry and no doubt money if it was clear from the beginning how much of the breast was involved! We can only hope that improvements in scanning provides a solution in the future to save other women from needing to go through multiple surgeries and the associated physical and psychological trauma.
Well that's my little rant of the day over, apologies Coralie for hijacking your thread but I do feel it important we discuss how it feels to go through a DCIS diagnosis, it may be minor as breast cancer goes but it sure does cause a lot of trouble!
Hi everyone one. Since July I've been on this DCIS roller coaster. Started with a bleeding nipped. 8 days later seen in Lewisham and several mamagrams and CT scans later was told nothing to worry about. No sign of cancer. Had a microdectomy to remove bleeding duct. Results Low grade DCIS. Told to have a central resection. I asked should I have a masectomy and was told no no that's overkill. Well they didn't get clear margins and was told yesterday following a 3rd operation for a cavity shave that I have to have a masectomy. I wish I went with my gut instinct and insisted on masectomy in first place. Now looking at reconstruction options. I'm leaning to a DIEP. any thoughts wellcome
Hi Ali49. The radiotherapy was fine. I used Aloe Vera when I got home after the radiotherapy and E45 at night. My skin got slightly pink towards the end of the 3 week session and a little bit more pink in the following 2 weeks. Now 3 weeks after finishing my skin is practically back to normal. Also I never experienced any tiredness. The only other symptom was a very slight itch around the nipple. Hope all goes well for you.
I too had the awful decision of whether to leave my DCIS to chance or whether to go for surgery .. It was painstaking as mine is low grade . The area is 59mm x25mm which is beyond the size in which they prefer to leave alone . I used the information from this site and from speaking to other ladies in my area who had also experienced BC . Id probably say I made my mind up after speaking to a lady who said never believe what youre told first time because the story can change , and theres no way of being absolutely sure what is in the tissue unless its sent to the pathology lab . I could well be overtreated but for me my mother died at 57 ( gynae related cancer ) and my grandmother at 29 .( I dont know what from ) .
The surgeon and breast care nurse went over the trial with me , but I figured what the hell would I be waiting for year in and year out ...for it to become invasive ! Im extremely lucky to be in the low grade group as it is . Im having my lymph node biopsy in a couple of weeks and a mastectomy about 3 weeks later . I feel that Iv made the right decision for me . x
I think that the confusion is that the medics just dont know, and thats why we end up not really knowing what to do for the best. My breast surgeon said right from the start that if my DCIS was left it may come to nothing,but it may... so I had a second opinion and had the same advice so I went ahead. Until the research can identify which DCIS will become invasive and which won't, most of us will go for surgery. Its no comfort but...hope you get to feel ok about the treatment you decide.
Every bestwish that you get through this ok, Caroluna
I had a WLE in June followed by a re-excision after being diagnosed with high grade DCIS. The first oncologist I saw after the op to discuss radiotherapy told me there was a 30% chance of recurrence without radiotherapy and a15% chance of recurrence with it. The second oncologist I saw yesterday post my 3 weeks of radiotherapy said there was a very low chance of recurrence and when I told him about the 30% /15% risk quoted by the previous oncologist he said these figures were out of date and quoted about 5% after radiotherapy. He then went on to say he believes DCIS is over treated and if he had his way surgery and radiotherapy would not be given unless the patient was under 40 but unfortunately policy dictated the treatment he had to adhere to. I would like to believe what I was told yesterday but must admit to being a little bit confused.