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DCIS ER/PR+, 1 week till BM and the future looks bright!

olympicmtgirl
olympicmtgirl Member Posts: 28

After I discovered my growth, I spent a lot of time on breastcancer.org. I appreciate the knowledge and especially the emotional support. Got a plan, pivoted to another plan, and have waited six weeks doing comfort-planning. Here is my story in case it is helpful to anyone. Of course, every journey is unique.

Pivoted from the long intake queue at my area's cancer center when I learned its ORs had access issues to female surgeon at another hospital that could award me a surgery date up front. The surgeon is caring, smart, a clear communicator … and through just plain luck, a leader in flat closure surgery. I pretty much wear an "I am on Team Buchanan" t-shirt. My fan girl gushing may be getting old but my confidence in her has really helped me though the seven weeks wait for surgery.

I was very worried about having a long outpatient procedure and nausea on the two-hour drive home. My surgeon ordered a pec block plus anesthesia. I have learned anesthesia is much improved plus the team prescribed a 3-day nausea patch. Also, a girlfriend is flying in during my surgery to help my husband and me on the drive home and for the first few days. Again, confidence-boosting.

I like things lined up and ready:
- got a triangle pillow, some disposable waterproof sheets and a egg crate topper from our DME lending library
- made a nest on my zero gravity lawn chair for downstairs and will fix my bed up with the pillow and a protective pad
- got stool softeners and will take one as I head in to surgery (aiming not to take much narcotics but told just a lot of Tylenol will shut ya down)
- got 1 bra with pockets (which I can shrink and wear with pads for the weeks after)
- put up a CaringBridge to simplify our lives

My adult son expanded his family responsibilities from all-things-tech to include drug supplier. Well 2 CBD gummies that I cut into quarters and took when I was spiraling up worrying about something. Think they do help!

What I did NOT do was ask more medical questions about steps after surgery … and instead used my imagination. Never a good thing. With two weeks to go I called the nurse and started asking probing questions. She set up a Zoom with my surgeon and this is what I learned. Just one surgeon's take but it gave me my first expert's perspective. I will be meeting with an oncologist one week after surgery then get a second oncologist opinion if their opinions vary radically.

Aesthetic Flat Closure - Is there anything unique about after care? Nothing special – normal schedule
1 week see Dr B
1-3 weeks drains removed, start breast PT (called a lymphedema clinic in my area)
4-6 weeks see doc, released to full activity (I will see ARNP at office) can then massage scar, swim, lift, etc.
Finish breast PT, go to regular PT, maybe massage (I gavel bike and am fixated on getting my strength back)
Annually – chest wall exam
Oncologist as needed

Pathology – performed in depth left breast but also on right breast
Surgeon maps natural boundaries pre surgery, posterior margin pec major, removes fascia (thin layer over muscle)
Aims to remove breast in one flat piece, then breast weighed, sized, sliced like bread (approx. 10 slices)
about 25% sampled, pathologist may request additional slices in certain areas which will delay report
If invasive found (she estimates odds 40%) will test Ki-67 (proliferation index, over 20 is high, test matches the grade so low grade tumor, low Ki67) and HER2 status
Margins - Aim to tumor on ink – standard for an adequate margin in invasive cancer (1 mm for mastectomy)
ADDITIONAL SURGERY FOR CLEAN MARGINS – rare in her experience unless cancer in skin or nipple saving surgery

Chemo? NO
Maybe 1% chance if find another higher risk cancer like triple negative discovered
Olden times got chemo if tumor large, today more fine tuned, Use genetic tests to evaluate risk

Radiation? UNLIKELY - constellation of features relating to chest wall/lymph nodes need to be present
- cancer in multiple nodes
- size of invasive component 3-4 cm
- margins positive skin or chest wall
- lymph vascular invasion (pieces of cancer in blood vessels of breast – ready to spread)
- age (under 50 higher rate)
- extra nodal extension (cancer broke out of lymph nodes and invaded local fat)

Hormone Therapy 50/50 chance, 5 years normal, 10 if high risk
NOT if only DCIS
Role for hormonal therapy to protect 2nd breast but not a factor for me

She gave me an oncologist recommendation
Oncologist looks for targets and treatment based on type of tumor and receptors.
They focus on systemic risk outside breast and lymph nodes.
May order additional testing such as genomic tests (Oncotype genomic profile that gives a reoccurrence score and helps determine if chemo needed. Allows better decisions based on outcome statistics) also MammaPrint. Can do on paraffin sample later
IF additional cancers, complications – WILL SEND TO TUMOR BOARD
May recommend seeing Radiologist, then refer locally for treatment (or direct to local)
Hormone Therapy if needed, If follows case, will do chest wall exam
Will walk thru bone health/osteopenia issues and help me develop my bone health plan

Again, thanks and will post in surgery forum afterwards. Good luck to EVERYONE on the forum.

We got this.

Comments

  • lalbo
    lalbo Member Posts: 68
    edited February 2022

    OlympicMtGirl - Wow! You are on it! I wish I had found this website prior to my diagnosis and surgeries. But, I'm impressed, you've really got a plan. Best of luck!

  • olympicmtgirl
    olympicmtgirl Member Posts: 28
    edited February 2022

    Thx. I'm taking all my confidence from having a plan. Whether or not it comes specifically true ... we will know late March! I'm hopeful but I will deal with whatever I get. Yes, this website is amazing..

  • rah2464
    rah2464 Member Posts: 1,192
    edited March 2022

    OlympicMtGirl - It appears you have a very good surgeon lined up. I hope surgery goes very well and recovery is swift. Those nerve blocs are wonderful and really reduce the need for a lot of pain medication (most times!). I am truly pleased to see in your timeline that breast PT is included as part of your early recovery. How wonderful to see that need addressed. You are in good hands.