Forum Discussion
Decision to make Invasive DCIS
Hi - I had my first excision 10th May which resulted in 16mm Invasive DCIS ER+ PR+ HER2-. No clear margins.
Second excision 24th May which resulted in 10mm invasive DCIS and a 6mm Tumor (whats the difference?) No clear margins.
Three weeks later - yesterday I had an MRI as I thought they didn't know the second DCIS was there so lets have a proper look.
Firstly I was told I would have the excision and then to radiotherapy and hormone treatment. After the second excision I was just really told what I had and given a booklet 'Breast Prostheses and Reconstruction' nothing else. I am going tomorrow to see the BS with a copy of my MRI and a decision will have to be made.
My question is: (if anyone has any ideas) I would like to have a bilateral mastectomy with skin sparing DIEP flap reconstruction. (After a lot of reading and googling:) However if they throw at me radiation and/or chemo - should that come before reconstruction or after or not at all. I just haven't got my head around this bit.
Thanks Julie.
Second excision 24th May which resulted in 10mm invasive DCIS and a 6mm Tumor (whats the difference?) No clear margins.
Three weeks later - yesterday I had an MRI as I thought they didn't know the second DCIS was there so lets have a proper look.
Firstly I was told I would have the excision and then to radiotherapy and hormone treatment. After the second excision I was just really told what I had and given a booklet 'Breast Prostheses and Reconstruction' nothing else. I am going tomorrow to see the BS with a copy of my MRI and a decision will have to be made.
My question is: (if anyone has any ideas) I would like to have a bilateral mastectomy with skin sparing DIEP flap reconstruction. (After a lot of reading and googling:) However if they throw at me radiation and/or chemo - should that come before reconstruction or after or not at all. I just haven't got my head around this bit.
Thanks Julie.
34 Replies
- Yep I had multifocal DCIS so opted for a mastectomy (left vertical skin sparing). It meant I didn't have to have rads or chemo. I went private and once all procedures calculated, was about $6k out of pocket.
All breast tissue gone, no lymph node involvement. And then a DIEP Recon which has been fabulous! Check out our stories in the Choosing Breast Reconstruction Group x - @Harvey1903 sounds like you've had a bit of a rough time. My 1st diagnosis was DCIS, I had a lumpectomy and clear margins, ER+ only, went onto 5 week so of radiation and then 4yrs of tamoxifen. I then had a recurrence same spot, inspite of all that treatment, so had another lumpectomy clear margins, no node involvement, ER+, Stage 2, Grade 3 so had chemo for 6 months. 1yr post treatment I had a single mastectomy/diep flap recon in Feb 2017, 5 months after that a revision right breast lift, nipple recon and re-excision of my tummy scar by 30cm. I've had the tattoo and completely done :D I couldnt have an implant due to radiation in 2011, and thats why I had the Diep. Radiation cost was minimal I went public, chemo I went private and only seeing the Oncologist cost me not chemo. I had it at Freemasons. Only out of pocket really Ive had is surgeries. My BS and PS work closely together so pushed me through public instead to save me $10,000 out of pocket. I also had genetic testing which was negative, only my Mum had BC no other history.
Also if you haven't joined the Breast Reconstruction Group here's the link
http://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction
@Nikkid had multi focal DCIS and can weigh in with her experience and her treatment path.
Hugs Melinda xo - @nikov Glad we were able to help. Thank you for your kind words. It's good to be able to give back here. So many have, and are, helping me. K xox
- Thanks @kmakm for your continuous support . Last week you guys got me through a very dark stage .
Sorry to hear you are a bit low . Sending you strength , good on you for hanging in there . I admire your strength and courage and during all of this you are helping so many of us on here . Tomorrow is a new day xx - Yes, I think the early MRI will be marvellous for you. You've really been through the mill.
You'll work out this site soon enough. Just yell out if you have a question.
I'm plodding along. Bit low at the moment but hanging in there. Recovery and the new normal has its challenges. But better than the alternative that's for sure! K xox - @kmakm thank you ! Xx I couldn’t believe it ..... and still have questions about the rest of my breast but I feel so much better . The fact that I can do an MRI IN 6 months instead of in a year puts me a bit more at ease .
I haven’t cauggt up on everyone yet still learning how to navigate this site . Hope you are going ok xxx - Yay for having a plan and yay for those clear margins... finally! Well done for hanging in there @Nicksta. K xox
- Hi@Harvey1903
I haven’t been on here for while and was wondering how you went as our story was similar. You must be so relieved to have a plan with direction .
i got my results from my 3 rd re excision on Friday CLEAR MARGINS so my BS suggests I have radiation 6 weeks / 5 days per week with hormone treatment . My cancer was invasive ductal carcinoma it scanned at 4mm ended up 4 times bigger then had satellite nodules with ductal carcinoma in situ . Hormone positive HER negative . 3 surgeries due to unclear margins . The last margin she took 6 Cm and it was clear . I am meeting with oncologist on the 12 Th . The plan is that radiation will mop up any residual dc in situ ( none of this showed on my ultrasound ) they will also do an MRI within 6 months to check on things .
I am happy to have a plan at last .
wishing you all the best and so happy you have made a decision . The hardest part is the waiting and the not knowing .
Take care of yourself x - So glad to be of help to a fellow warrior. Ensure you are 100% happy with your PS. Ask to see photos of previous work. Xx
Best wishes Julie with all that is ahead. Ask any questions you may have and I'll di my best yo answer them.
