Prophylactic Mastectomy

[KimS425]

Hi - I have received my diagnosis from my lumpectomy of "Ductal Intraepithelial Neoplasia 1 (Flat Epithelial Atypia) - I was told this is also known as "clinging" DCIS.  My question is this - what is the difference between this and regular DCIS and is prophylactic mastectomy a viable option to avoid any further recurrence?  I also had another mammogram following my surgery and there are still a section of microcalcifications that the surgeon missed.  If I don't opt for PM (that's what my Oncologist recommends) - then I have to go in for another biopsy, and constant screening.  I'm only 41 - please give me your thoughts.

[MagsFury]

What decision did you come to Kim?  

[MagsFury]

It's now nearly eleven weks since my bi-lateral mastectomy and I'm doing really well.  I don't have any pain at all now and the only thing beside the appearance of my chest (which will be corrected later) is the strange phenomenom that when I remove my underwear and prosthesis my muscles tighten.  As you will know, it's usually the opposite way around.  Not complaining though, everything has gone very well and the spectre of breast cancer is now hopefully well and truly in the past.

[MagsFury]

Sorry, I cut and pasted from my reply to someone else and just realised that I'd not mentioned what first occurred.

Just over nine years ago a mammogram revealed an 'suspect' are of calcification which after a biopsy proved to be benign.  You can now read on... above...

[MagsFury]

I feel the need to tell you about my history.  Nine years ago as I mentioned I had the biopsy and following that, about six to eight months I felt a lump in the left breast and was diagnosed with grade 2 tumour. I had a wide local excision and axillary node clearance followed by radiation therapy and Arimidex for 5 years.  

I was fine with a few concerns which came to nothing until November 2008 when a mammogram revealed unusual calcifications in the right breast.  The biopsy revealed high grade DCIS and I took the decision to undergo a bi-lateral mastectomy to prevent further worry. I also didn't want the radiotherapy which would inevitably have followed a lumpectomy.

My surgeon was very sympathetic saying that he understood why I came to the decision in view of my previous history. I had the operation on Jan 15th and there was no spread and the sentinal node biopsy also proved clear.

It might seem radical but I can now take comfort in the fact that I don't have to worry about what the next mammogram might reveal.  I'm doing OK, have to keep having seroma drained and I'm very sore, heavy and tight but I have no regrets.

[KimS425]

Thank you so much for your response - I'm now realizing the emotional rollercoaster is a part of this disease, and your kind response has a very calming effect!!  This has been my third lumpectomy and I've been going through the fear for two years now of being diagnosed.  Now that I have the diagnosis, I know the best thing to do is the PM so I can move on with my life.  I have a 2 little boys - 6 and 3 years old - and they are the center of my universe.  My husband is very supportive and tells me I need to do whatever it takes to make sure I'm healthy for years to come.  I feel SO much better today - thank you again!

[japdip]

This is such a personal decision ... if the Oncologist has recommended it I would certainly give it serious consideration. If you are reluctant to lose the breast you could go for the biopsy this one time. You will still need to monitor the other breast in any event so you won't be free of screening. It would also depend on whether you are considering immediate reconstruction or even recon. at a later date. You might consider a second opinion if you are undecided as to which option would benefit you the most. It has nothing to do with your confidence in your present Physicians / it's just a helpful tool when you are presented with options.  Regards ....