synchronous bilateral dcis + unilateral ilc

piscesdragon

Hi

I'm in the beginning stages of treatment. I have synchronous bilateral DCIS (high grade right/ intermediate grade left) as well as invasive lobular cancer in the right.

I have had a mammo, a biopsy in each breast, an MRI and bilateral wide excision at the end of March. The surgeon did not get it all AND pathology discovered the ILC in the right which had not shown on any of the imaging or biopsies.

 I am scheduled for further surgery this coming Tuesday where the doc will be trying another wide excision in both to get clean margins and will also be performing a sentinel node biopsy on the right (with possible full axillary dissection).

Has anyone had bilateral carcinomas with an extra cancer type (ie dcis AND ilc)? What did your treatment entail? Did you opt for mastectomy?

I've asked my doc 'why not bilateral mastectomy?' and she says 'we're not there yet'. But I really don't want to go through surgery a third time. I'm 46 years old and would like to keep my breasts but not at the risk of my life.

Any opinions? Words of wisdom? Anyone out there with a similar diagnosis?

shiny

Hi there,

So sorry of course that you have had to join "the" club. It's 6 am here in England so this canadian abroad will be tending to her early rising kiddos in a mo, but I just wanted to say "hi" and assure you that this is indeed a very good place to come for help support advice and to share. I am sure that you will get replies in a wee while, and you might also want to post in a different more specific forum in addition to here, as there are so many forums!

 Your oncs will get much better information from this forthcoming surgery, this "unknown" phase is the worst, hardest to manage often. At least when you know "what your current "deal" is, and what your plan of treatment or "attack" is to address your particular situation you can feel more in control.

Ask all your questions and stay in charge. Make sure you understand what is happening and why, your team has to communicate with you fully; it's fine for them to know why they are doing things, but you have got to feel you understand what they are proposing and why. So when you don't get it, ask again.

If, when after surgery it is found that a person needs chemo, the oncs will want to "get going" in a resonable time scale, if you have had more major surgery that can delay things (as you'd have to have fully healled before hand), so the lumpectomy first with your nodes seems to make sense from where I sit, but I totally understand your frustration with having to have more surgery.

BTW: I am nearly 3 years on from DX am 42 now. I did have a lumpectomy and full node disection first then after all my chemo, I opted for a double mast with imediate recon with variation on a  DIEP type recon) due to my particular situation and family hist etc. I had very experience plastic recon surgeons and I am very pleased with the result. It's amazing what a good plastic surgeon can do- anyhow, that bit was just so you knew my backround.

Hang in there, sure you'll get some replies that are more specific to your query soon, just wanted to lend some support in the meantime.

Take care, and keep visiting the boards.

Shiny

Jenna1961

It is hard to say. First, I don't know the significance of having both breasts affected. Does it mean your body is more predisposed to producing abnormal breast tissue? It may sound too radical, but in that case, you may not want to have breast tissue at all.

Regarding having another lumpectomies versus mastectomies, there is a long debate here on the DCIS forum about that. You can review some of the Beesie's recent posts. It comes down to a personal view on the issues such as coping with the loss of the breasts, coping with the fear of recurrence or (further) seeding of the invasive cells due to positive margins.

Not an easy decision.

Best,
Jenna