Big fat "NO" from our surgeon

Dr. Chisholm finally got back to us today after almost 3 weeks of waiting. He refused to do an areola-sparing mastectomy and I'm pretty sure he doesn't know what one is, he has it confused with a nipple-sparing procedure. He's very "old school" and that's starting to grate on us too. And for icing on the cake he refused to let us even talk to another surgeon at his office. He even went so far as to say that if we had surgery at his hospital he'd be the one doing it.

We are fed up with him. We called our plastic surgeon back and asked for a referral for another doctor and got one the next day.

BRCA test comes back

We're really relieved to hear I'm BRCA negative, I don't have the BRCA1 or BRCA2 mutation that enables many cancers, particularly breast and ovarian, at a young age. The test was somehow mis-handled and reported back to the wrong doctor. Add a few missed phone calls and we wound up waiting an extra month for these results.

Well the plastic surgeon is ready...

Our plastic surgeon called to tell us he has an opening next week. But our surgeon hasn't answered us about what mastectomy he's willing to do. Our other surgeon (at the same office) has not called us back either. So we could get this over with 4 days from now but we can't get any love from Dr. Chisholm's office. We're getting more and more tired of being ignored by him and his staff.

Can we change doctors?

Today we called again to try an get an appointment with a surgeon that we've been told can do the areola-sparing mastectomy. Unfortunately he's in the same group as our present surgeon and the staff there are not making it easy for us to "jump ship" to the new doctor. The staff there are awful and take days to return phone calls.

Followup with surgeon

I meet with the surgeon finally and he seems very annoyed that we're considering the areola-sparing mastectomy and he pushes hard for us to abandon it. He doesn't say "no" but he sure did not seem to want to do it.

We call our plastic surgeon to find some surgeons who know how to do it. The first one he mentions is right here in the same surgical group as our Dr. Chisholm. This will be tricky.

Meet plastic surgeon #5

Today we met yet another plastic surgeon, the last on our list but the one we heard the most good things about. The recommendations were right, he, his office, and staff seem to be focused on making women look good. He talks to us like real people but explains everything too. We're getting to be old hands at breast reconstruction options now. He tells us there is a way to perhaps spare most of the nipple and then use a bit of the other nipple to help reconstruct. We're thrilled because most of the tattoo jobs we saw photos of were not natural looking. Even if none of that works out we're pretty sure we've found our plastic surgeon.

We called our surgeon to see what he thought but it would be almost a week before we can even talk to him.

First trip to Mayo

Today we went to Mayo to interview a surgeon for our mastectomy and also a plastic surgeon for reconstruction. We left thinking that Mayo is fairly conservative for a "clinic". But it has some powerful advantages in having a team approach to every patient and having all your records on one computer system. If we have to have chemotherapy or any long-term treatment, Mayo seems like the logical choice.

Oncotype DX results are good

Our Oncotype DX report came back today. We scored an 18, which means we have an 11% chance of having cancer elsewhere after 10 years. We're just barely in the "Low Risk" category. This is one of the more powerful pieces of good news we're likely to get.

Plastic surgeons

Our surgeon said we should take some time and check out what options plastic surgeons can offer us. This week we met two more of them. One fairly standard and one somewhat "old school", neither of them seem to be for us. Interestingly about half of the plastic surgeons charged us for 20-45 minutes of discussion, one was $240 for 30 minutes.

Plastic Surgeon #1

Today I started my many appointments we've setup for plastic surgeons. This is the first of 6 that do reconstruction around town. I called about 20 plastic surgeons to narrow my list to these 6.

Meet the oncologist

Today we met our medical oncologist, Dr. Stone. He says we can probably avoid chemo if we can get clear margins and we don't see any vascular involvement. We had a large tumor but it was low grade and had no nodes involved. He wants to run an Oncotype DX test to see if our tumor is likely to spread. It's $3,500.00 but that's alot cheaper than chemo.

We also run a BRCA1 and BRCA2 test (see more here) and that's another $3,500.00 It will tell if I have a certain genetic defect that opens me up to many types of cancer. It's awful if it's positive so we're crossing our fingers.

Lumpectomy

Today we had our lumpectomy. The surgeon really disappointed us though. He did not get clear margins, he said he had to stop because he was worried about the appearance of the breast when he was done. We agreed that the appearance would have needed some reconstruction but him quitting with positive margins just means we'll have to have more surgery later. In fact we were prepared for a simple mastectomy if that's what he decided.

The good news today was no lymph node involvement. Node status is one of the biggest single tipping points in determining if the cancer is spreading. Also we have no vessel invasion (LVI) found in the tumor. An LVI is not as serious as a positive lymph node, but it is a sign of aggression.

The bad news is the tumor is 23mm, much bigger than we had hoped, and there's more left to get.

We know our stage though, we're Stage IIA, more specifically we're T2 pN0 MX.

Needle biopsy

Today we had a needle biopsy. We thought this was a formality and would reveal another fibrocystic lump we'd have to remove. Not so and this is the beginning of a long road. Two days later our path report tells us we had two locations reveal cancer and DCIS, one at least 10mm, the other 12mm. We later learn there is only one tumor, but at this time we're scared there are two.

The good news is "low grade" and "low mitotic rate" and "lymphatic invasion is not seen", this means our tumor appears to be slow growing and mild. Also we're ER+ and PR+ which means estrogen receptors and progesterone receptors are on the cancer cells. That's good news because it means we can use hormone therapy to fight the cancer cells. Finally we're also HER2 negative, this is good because HER2+ is associated with more aggressive cancers.