April 2010 - released from BIDMC on Friday, April 2nd. Three drains removed on April 8th. One more drain to be removed on April 15th. Received pathology report: LCIS present in right breast, not the breast that had had 3 prior biopsies.
March 2010 - had a FEED THE FLAP party to celebrate with friends. Had surgery on March 29th. Spent 4 nights at Beth Israel Deaconess Medical Center in Boston (see TEAM).
February 2010 - Breast surgeon's office called to tell me that my surgery would be rescheduled to March 29th. I told them that I would 'think about it'. Spent that night making my decision to move forward all over again. The next day I agreed to March 29th. I had to call to have my pre-admission testing rescheduled and got appointment dates for my blood donation just two weeks out from the surgery. This seemed odd, so I checked the paperwork they had sent and called them back. Ooops. Then had to call to make sure that I would see the plastic surgeon when I am in Boston for my pre-admission testing. This confusion created some doubts, but I think it was a secretarial issue.
December 7, 2009 - today I made the call to Boston to book my prophylactic bilateral mastectomy and DIEP reconstruction. My motivtion: my friend got tickets to the Taylor Swift concert in early June and I need to be feeling well enough for the ride and the concert!!! Date set: March 15, 2010.
November 2009 - met with breast surgeon in Boston. She is the surgeon I preferred, but ultimately is the only breast surgeon on board right now. She suggested that my DH and daughters come in for my appointment, along with a medical student. I must say that she was very good when talking about my surgery with JieJie.
October 2009 - met with a second plastic surgeon in Boston. Chose this one since they have a state-of-the-art oxygenation(?) machine that they use after the DIEP to monitor patients.
September 2009 - met with plastic surgeon in Boston.
July 2009 - scheduled appointment with DIEP physician for September 24th. Meeting with the plastic surgeon first really makes sense since the bulk of the surgery is the reconstruction. She will refer me to a breast surgeon. I just hope the breast surgeon impresses as much as the one I met with in June. Now I am working on 'feeding the flap'. The more fatty tissue I have the stronger the likelihood of being an even better candidate for the DIEP procedure.
June (later) - spoke with insurance company about costs for DIEP since there is no one in my state qualified to do the DIEP. They checked and said that the doctor I already had an out-of-network referral for was in their BCBS nework and I would need only pay in-network fees. I cried. I clarified. I cried again. Relief. Maybe this was going to work out. I asked about the DIEP practice in New Orleans. They are not in network, but I could use them if I chose to. I would have to pay the out-of-network fees. Not sure I had noted this in my timeline, but I did call NOLA and they wanted $6000 up front and $5000 for second surgery in addition to the out-of-network insurance costs. Not that that is alot of money, but it is to me. Plus I would have the additional travel costs.
June - 1 2009. Got referrals to in-network doctors & set up appointments for consultations.
Met with breast surgeon - she was fantastic. Hands down a great choice!! She even said I was a good candidate for a nipple sparing mastectomy. She explained everything. Confirmed that my risk of getting invasive bc was quite high.
Met with plastic surgeon - he was great - if I want an implant. After talking with him about implants that is not what I want. I want to be done with it after my surgery (and follow-up surgeries). With implants I would most likely face problems down the road. Plus I don't like the idea of something like that in my body. BUT he did say that I would be a good candidate for the DIEP flap procedure, although my breasts would be a bit smaller. Since I am not in this for larger breasts that is just fine with me. I just want breasts and no cancer and no risk of breast cancer.
6/3/09 – More calls to:
Called primary care doctor’s office to ask about referrals to my new choices for BS and PS. Patient coordinator was very supportive and understood the need to find a provider in-network. She will make referrals.
Still no call back from breast surgeon.
6/2/09 – Multiple calls to:
Breast surgeon for full report on biopsy – more LCIS, ADH, ALH
Insurance Company – double checking on coverage for 2nd visit to plastic surgeon – learned that he is an ‘out-of-network’ provider, which means I would cover 25% of costs + deductible + difference between billed/allowed amounts. That was eye opening.
Insurance Company – got names of in-network providers
Called in-network plastic surgery office and was told to find a breast surgeon in their area. Was given names, double checked them on the insurance website for in-network. Spoke with patient coordinator who mentioned that she had LCIS and had a PBM last year. THAT MADE MY DAY – I have not found one single person in real life who has LCIS.
5/09 - Called insurance company for out-of-network referral to Boston Plastic Surgeon who was recommended by Dana Farber oncologist. Asked about out-of-network providers and was told that both plastic surgeons in town were out-of-network. Panic set in. Emailed a friend of a friend who had BM and implants and asked for the names of her doctors. Got names and checked with insurance company on network status - in-network!! Yippee.
5/19/09 – Voice mail from breast surgeon (a bit overdue) with results – negative.
5/1/09 – Core Needle Biopsy – not bad. Told BS I would most likely want (?) a PBM in the fall if biopsy is negative.
4/09 – Follow-up with Breast Surgeon who did ultrasound – saw an odd spot on mammogram, recommended biopsy. Chose core needle vs. excisional. Wanted to save breast tissue for possible PBM.
3/09 – Mammogram (normal results)
2/09 - Met with other plastic surgeon in town. Really liked him and decided that he would do the reconstruction. Still had lingering thoughts of not wanting implantsm, but this would be the easiest route.
1/09 – MRI normal
12/30/08 – Dana Farber:Appts with genetic counselor and oncologist for second opinion. The oncologist was arrogant, abrasive and rude. She said, "come back when you have real cancer." This floored me and made me stop short in my tracks.
12/22/08 – MRI - very painful (and rude nurses) trying to get IV line in.
12/17/08 – Appt. with Oncologist - 3 choices: 1. vigilant follow-up, 2. tamoxifen, 3. bilateral mastectomy. She said she would "not disagree" if I chose bilateral.
12/5/08 – Appt. with Plastic Surgeon #1 (flap procedures)
12/2/08 – Follow-up with Breast Surgeon - LCIS is a marker for increased risk of breast cancer. No rush to make decision.
11/22/08 – Received pathology report in mail (always request copies sent to me)
11/15/08 – Biopsy Results – Lobular Carcinoma In Situ, ADH & ALH
11/10/08 – Surgical Biopsy
9/15/08 – Biopsy Results – Atypical Ductal Hyperplasia (second opinion from Dana Farber found LCIS in this tissue)
9/6/08 – Core Needle Biopsy (got frozen shoulder from this procedure)
7/3/08 – Rescheduled Core Needle Biopsy (dealing with spider bite – thought it was lyme disease, then MRSA – was neither – under high degree of stress!)
5/08 – Denied MRI guided Biopsy – 2nd time - they said it was "investigational". Breast Surgeon decided to do Core Needle Biopsy in July
4/08 – Denied MRI Guided Biopsy
12/07 – MRI
11/07 – Ultrasound with Breast Surgeon
10/07 – First appt with Breast Surgeon
10/07 – Mammogram – “odd spot”
10/07 – Requested Consult with Breast Surgeon due to family history
Breast surgeon consult was recommended to me by my PCP in 2006 due to family history, dense breasts, no births, etc. I held off on this due to our pending adoption from China. I figured I was pretty safe holding off on seeing the breast surgeon since nothing had shown up on my mammograms or during clinical breast exams.