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of recurrence and when I told him about the 30% /15% risk quoted by the previous oncologist he said these figures were out of date and quoted about 5% after radiotherapy.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.
Hi 76AgMy BCN told me that trials are currently be8ng held to see what happens when DCIS is treated and what happens when it’s left. There will always be differences in opinion. As I face surgery for the 2nd time tomorrow I no I wouldn’t choose all this but I would rather treat it than leave it until the professionals say otherwise. However you have done it now so you have given yourself the best chance. Well done!! How was the radiotherapy?
Hiya
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
Hi
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 had already read articles about whether or not DCIS is over treated so wasn’t really surprised about his opinion on the matter but what did confuse me was the difference in the recurrence risk given by the first and second oncologist.
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
Hiya Pinky 3. I was told in the beginning that the bleeding nipple was just a blocked duct or papaloma. My friend, who had a previous bleeding nipple, told same and then developed invasive cancer.she came with me to ensure it was checked properly. Nothing showed so told its good news, then i had a microdochectomy. Results came back i had low grade DCIS. After op i had MRI. I asked do i need a mastectomy. I was told overkill. Now i feel DCIS is a hidden time bomb and bits and bobs taken out as ive had, could not predict the extent of this desease. Hence the mastectomy. All very confusing. My emotions are up and down. Now trying to get feed back of DIEP reconstruction compared with implants before Mondayx
Hiya Pinky the bleeding was intermittent. It stopped the week i went to the doctor. My friend at work had same thing and she got sent away. Her cancer came back a year later where it was in lymph nodes neck ect. She just had a masectomy. They dont test the nipple blood only the duct thats bleeding under microdochectomyx i want it all soerted asap now.
Hiya Schumi12
I’ve been researching DIEP and some of the others but i want the DIEP now. No more messing about. I feel like a DCIS guinea pig for experimental tissue. I wish i had gone wuth my gut instinct after reading lots on this forum. I also don’t want to have and implant again after researching. The roller coaster ive been on. Because i was led to believe it was not too bad and it was easy to treat ect. The ducts are everywhere and i wish i had stuck ti my guns last yearx
Good luck for next surgery Schumi
I feel the surgeons are learning lots of different operations before ending up with masectomy. Wish they never made this DCIS such a good cancer to have because ive still had to have a bloody masectomy. I was diagnosed August last year. Id be recovering by now if they had been realistic about common outcomes. I feel this cancer is a timebomb because with me, it never showed on any mamagram or CT scan??, the extent was not picked up on the MRI either?? It was only after microdochectomy on nipple did it show up! I now worry about the other breast.
Hiya I’vejust discovered today that following my news in the corridor in front of people, that my consultant doesn’t have a mastectomy list??, could i see someone else, so before i went in to my consultant i knew i was due a mastectomy? However my consultant said he made an appointment at 1pm next Monday to see the Plastic surgeon at St Thomas. I phoned to check as we havent recieved the letter and thoroughly pissed off as no appointment has been made. This happened after the microdochectomy for results. Im so fuming as its Thursday now and i was promised first appointment at 1 so i can get back for my son. Ive tried to get the consultant but he’s gone home. The appointments guy said he can see on notes its been requested but not actioned. Ive just emailed the clinic manager but I’m so disappointed and stressed out by this all. I don’t trust anything said now because it keeps changing. Rant not over but got to settle my son nowx
Coralie tomorrow morning you need to ring PALS (patient liaison service) at the hospital attended. Tell them exactly what has happened and they will investigate and sort it for you. They just seem so very unprofessional!
I know. Im so mad. I cant fault the operations or my consultant but its the way last bad news delivery and 2nd time a mess ip with appointments . Ive emailed 3 managers frome lewisham, guys and the appointments manager, so well see.
Good luck. Steph has inspired me to have the same. Ive just had hicups with Guys as i found out in the corridor infront of people that my results meant masectomy? Then the appointment supposedly made for next Monday has not been actioned although requested? Yours will go perfectly and ill be following you and sending good vibesx
Good luck schumi, im sure the operation will be fine and i look forward to following you as i have with Ali and Steph. Stephs information was brilliant and has made me just want to get on with it too.
Hospital has called me back to apologise for the recent errors with me and i got my planning appointment with plastics on Mondayx
Thankyou Pinky and everyone. Ive recieved a letter report today, that was regarding the histology following my central resection but before the cavity shave. Im a bit dismayed that every time ive been told i have low grade DCIS yet this letter says i have high low and intermediate DCIS. If i had known that i may have asked for a mastectomy earlier? Anyway done now.
Feeling so overwhelmed spent whole day at St Thomas. Its now reality and now i feel so tearful. Operation is booked for 31st January for Diep. Felt so strong till nowx
Your get through it Coralie, and we’ll help you all the way xxxx
Thankyou. Its just hit me i guess and feeling out of control and helpless for my son. My husbands great but because my son is autistic he hates change. My husband of course will do things his way and my son may react. Ive never been away from them both and the house is full of anxiety and tensionx bit scaredx