Apr 24, 2019 06:59PM beesie.is.out-of-office wrote:

Tammy, yes, every diagnosis of DCIS from a needle biopsy is a preliminary diagnosis, and any case could be upgraded to invasive cancer once the final surgery is done and the full pathology is available. That said, overall ~20% of preliminary DCIS diagnoses are upgraded, and certain features of the preliminary DCIS diagnosis (large, high grade, multi-focal) present a higher risk to be upgraded, whereas other features (small, low grade, single focus) present only a very small risk of being upgraded. Whatever the diagnosis (DCIS or invasive cancer), the final diagnosis and staging can never be done until surgery is complete. The NCCN treatment guidelines for DCIS recommend either a lumpectomy + rads, or a mastectomy + SNB, or in very specific cases, a lumpectomy alone. I refer people again to the NCCN Guideline link that I provided in my previous post.

There should be no discussion about chemo in the context of a Stage 0 DCIS diagnosis. Chemo is not given for DCIS. However, chemo can come into play for those who've been preliminarily diagnosed with DCIS via a needle biopsy, but only if the final diagnosis after surgery is no longer DCIS but has been upgraded to invasive cancer. This would be because IDC was found in the breast tissue and/or because there is nodal involvement beyond ITC (isolated tumor cells). In those situations, the diagnosis has become invasive cancer, and is no longer Stage 0 DCIS. So if chemo enters the discussion, the diagnosis is not DCIS.

And again, a diagnosis of invasive cancer and the presence of positive nodes does not necessarily mean that chemo will be required. It might be, but there are many factors that the Medical Oncologist will consider.

All that said, most of the people who come here to read this forum and thread, who have started off with a needle biopsy result of DCIS, will end up with a final diagnosis of DCIS, Stage 0. And no invasive cancer, no positive nodes and no chemo.

Oct 17, 2019 08:11AM prepmom wrote:

I, too, recently made this decision and thought I'd share my thought process. I ultimately decided on BMX with tissue expanders. Implant exchange is Nov 4th. At the end of May I was diagnosed with DCIS, at the age of 50. My mother had BC diagnosed at 48 and again at 50. She opted for a lumpectomy with radiation and then MX with second occurrence. I've been tested for a panel of 15 gene mutations - none present.

My diagnosis led to an MRI with a need for 2 additional biopsies (one left, one right). The left pathology came back as LCIS. The MRI also noted a large (>6 cm, I'm a small B cup) area of atypia, but probably benign cells- "a busy breast". I sought opinions at 2 well known research / teaching hospitals. One thought that there would be both skin and chest wall involvement. The other disagreed. Both ultimately recommended BMX due to DCIS / LCIS dx, family history, and age. Lumpectomy with radiation and tamoxifen was also an option, but I couldn't live with the risk or additional surveillance that would have been required.

Fortunately, the final pathology after surgery showed no skin or chest wall involvement - good margins! For me my choice was obvious, but that doesn't mean that I have to like it. I was in great shape prior to surgery and (full) recovery is slower than I would have liked. I'm counting the days until Nov 4th, my exchange date.

Oct 31, 2019 08:51AM prepmom wrote:

Calendargirl- I'm so sorry that you have to go through this. But that said, you will be OK! Know this, keep it at the forefront of your thoughts, make it your mantra. Remember, that every situation is very different, but in my case the healing process went well. My incisions under my breast (I was able to have nipple sparing BMX) and from the SNB healed with no issue, no pain - I was off Rx pain meds within 3 days of coming home. Because of the BS's fear of skin involvement, she had to do quite a bit of work close to the skin. Great news- clean margins! However, this also left me with a half-dollar area of skin wound. I followed my PS's instructions to a T - showered daily with anti-bacterial soap and used triple- antibiotic cream. It took all of the past 11 weeks to get it to completely close, but thank goodness it has. Again, no pain, just a bit of worrying, but I knew I was in good hands.

I will not sugar-coat the tissue expanders. I am a very petite person and for me they have been extremely uncomfortable, but nothing I couldn't handle. No pain meds needed but I do take 2.5mg of diazapam (valium) to relax and sleep at night. I have no personal fear of becoming addicted, after my surgery on Monday, I'm done with that.

I have a wonderful physical therapist that is right in my PS's office. I was fairly fit prior to my surgery and have surprisingly had a bit of trouble regaining full mobility in my left shoulder. It is hard to wrap my head around not being able to workout like I used to at this time (I've lost a lot of strength as well) but my PT says I will get there. It does not keep me from doing most things and I just remind myself that this is a marathon not a sprint. There are many other women who do not have this issue. Again, everyone heals differently. In the end, I remind myself that 'I will be OK' and just keep doing everything I can to help myself.

As for timing, I had a great support group. My husband has been amazing. He did much of the housework and cooking for the first 3 weeks (I had a freezer-full to help him) and still does more than he ever did. However, within 5 weeks I was at a family wedding- dancing with my family, exhausted the next day. I took 8 weeks to return to my part-time job (from home)- it requires a lot of concentration and computer work. I didn't want to return until I knew I could do so at 100%. At 9 weeks, I went to the Penn State-Michigan game. It was a long day- all afternoon spent tailgating and then a 3.5 hour game. I walked almost 6 miles that day. Had a wonderful time! My husband and I have been going out to dinner once a week since about a month out. As I tell people who ask - I can do almost anything, just not in one day. Finally, at 11 weeks out, I am feeling back to normal except for these damn expanders. That's why I'm so excited for surgery on Monday. I'm in the homestretch. The finish line is in sight.

Finally, for me I have not mourned the loss of my breasts. Again, this is a very personal thing, but for me it was a trade I was willing to make. While intimate with my husband, I do miss the 'real ones' but I have no regrets. I played the hand I was dealt and I am confident in my future.

I will hold you in my prayers. Stay strong. You will be OK!

Nov 2, 2019 12:35PM prepmom wrote:

Calendergirl- I'm glad to know that maybe my experience and input has brought you just a bit of peace in your decision. Thank you for your good wishes for the 4th (only 48 hours, bye-bye TE's!!). If you'd like, let us know when you've scheduled. We are all in this together - you too will be a survivor!

Nov 19, 2019 01:49PM Levron wrote:

Before surgery I agreed to a lumpectomy & awoke from surgery to learn I had a partial mastectomy! When I questioned my surgeon he said when ANY part of breast tissue is removed then its considered "a partial mastectomy".