Hats and Bandanas

We went to the store and bought bandanas and some baseball hats. We bought some for the kids too and played pirates around the house. Seems like about 1/3 of my hair has fallen out so it's time to start working with this stuff.

Much More Tired

This time I'm napping every day for the last 3 days. No more aches (from the Neulasta shot?) but I'm definitely more tired. Lots of help from friends and family is helping us and helping to wear the kids out everyday.

I feel all dried out everywhere too, despite lots of water, lotion, etc.

The hair continues to come out a half dozen at a time, tomorrow I have to wash it and I'm not looking forward to how much comes out then.

So glad this is halfway done.

Neck Aches & Nausea at Midnight

Not as easy as the first cycle. I've got neck pain and I'm afraid to take an Advil because I'm also feeling like I'm going to throw up anytime. It takes 45 minutes for a Zofran to knock that back and I can take something for my neck, then another 30 minutes or so before that kicks in and lets me sleep.

My appetite is better but I was tired already today, it took 2 days to get tired the first time.

The hair is coming out now, no clumps yet but I'm leaving a few hairs behind wherever I go.

Chemo Day #2

Second time much like the first. After getting my lab work back and seeing good white counts (thanks Neulasta), we're sent off to the Chemo room. 2 hours of Adriamycin, Cytoxan and the gang. Mild nausea at home tonight, calmed by Zofran and Compazine. Today was actually a little better than the first cycle because I tried harder to eat and drink.

Still have all my hair but everyone agrees this is the week it must go. I've got one wig and a hat with more to come when I feel up to it this week.

Uh-oh Spicy Food!

I forgot they told me to avoid spicy food and I ate some marinated pork chops tonight. My stomach is reminding me now, not quite as bad as the initial chemo dose but no fun. My oncologist says stomach cells regenerate all the time and the chemo kills them just like it kills cancer cells.

Muscle Pain

My legs are aching for the past two days. I don't know if it's a genuine side effect or if I just over did it shopping for wigs. Either way climbing the stairs is a real pain.

Lab Work

Boring lab work visit today but this is where they see if my white cell count is bouncing back where it needs to be. Results next week.

Oh and my appetite is back to normal.

Chemo Going Well So Far

So far so good, I'm definitely more tired than normal but that's about all so far. I've lost about 5 lbs because almost nothing sounds good to eat to me. Still we're feeling very lucky.

Feeling Odd

At chemo +3 days I feel like my head is full of something, maybe the medicine. I almost have a headache all the time and I just don't feel like myself. I'm lucky I'm not tossing my cookies all day long. At least I can eat and I'm not completely useless.

Chemo Sets In

The chemo has been pretty light up until now, just nausea the first day and mild fatigue after that. But today I'm sleepy and napping at noon. Things smell funny but I'm still tasting things normally. A friend warned me that the first treatment can be lighter and they get worse as time goes on. I'm hoping it'll just be easy on me.

Neulasta Shot

Today we return for a Neulasta shot. It's $4,000.00 but it will let us do the treatment in 2 months instead of 3. It boosts the white cell count so we can get more chemo treatment sooner.

Chemo Day #1

Today is the first day of Chemo. We go and talk about it for awhile and the oncologist finally recommends we take Adriamycin over Docetaxel, with Cytoxan added. We'll "only" have 4 cycles, and we're doing the "dose-dense" treatment every two weeks, so we feel sort of lucky that ours will over in 2 months.

They give me a steroid, Benadryl, and something called Aloxi for nausea. Then they push in two big vials of the Adriamycin (a.k.a. doxorubicin). Finally they hang a bag of the Cytoxan and let it drip in. The whole treatment takes about 2 hours.

We go home and I feel fine for about 4 hours and then start to feel nausea. I take the Compazine they gave us and then the Zofran. No vomiting. I finally get some sleep at about 11 pm.

Chemo Decisions and HER2

We go in for a final appointment before chemo to discuss just what we'll take and what the effects will be. Just as we're getting started we discover the path report from surgery #4 showed us as having a 2+ score on the ICH test for the HER2 receptor. Oh shit. Our first path report showed us as being HER2- and we rejoiced because HER2+ tumors have a worse prognosis.

This ends our dicussion of chemo treatments, we can't pick one until we know HER2 status. We go home and read that 2+ ICH score is ambiguous and they must do a "FISH" test to tell for sure. The next day we discover the FISH test was already done (but not not entered in the computer at Mayo) and we are indeed HER2 negative.

It sure made for a horrible night though.

We have a friend who is getting considerably more chemotherapy because she is HER2+. In all other respects we are almost the same (stage II, node negative, ER+, PR+, about 40 years old). We sure did not want to hear that was our future.

And it all delays us yet another week.

What a difference 125 cc's makes

Today we go back to the plastic surgeon to get my tissue expander filled back up. My minor surgery 2 weeks ago required they take out most of the saline in the expander. Today they put in 125 cc's and that gives me about an A cup. Much easier to work with than a flat chest and mush closer to the B on the other side. No serious pain either.

Surgery #4

Today is surgery #4. The folks at Mayo have convinced me that one more (minor) surgery could help with my almost-positive margins. They are just taking about 3 square inches of skin around the lumpectomy scar. In surgery they take a little bit of the muscle underneath to get the margins as clear as they like. They have to drain out 150 ccs of my tissue expander but at least they don't have to remove it. Heidi Chua is the surgeon and she does a good job.

The subsequent path report shows tiny amounts of invasive cancer and some DCIS, so we're glad we did it.

To Mayo We Go

We get a flurry of appointments at Mayo. We meet with an oncologist who says we might consider 4 cycles of Docetaxel instead of 4 of Adriamycin and 4 of Taxol. Shorter sure sounds better to us, and maybe Docetaxel is a better drug with less side effects.

Next we meet with a radiation oncologist who says we don't have much use for radiation. Followed by another radiation oncologist who can't seem to decide if we need radiation or not. We ask if there are any gray areas where we might receive some radiation but not the whole 36 treatments but no. The radiation oncologist who can't decide (we call her the hand-wringer) defers judgment to the whole team.

Finally we meet a surgeon. She wants to re-excise the area and try to get better margins. We decide we'll do it if we can avoid radiation. It also means another month before the chemo can start though and it's awful knowing that is coming. Two days later we schedule the surgery.

Oncologist Visit

Today we went to the oncologist to review our bad path report. He says we'll need chemotherapy. He wants us to do 4 cycles of Adriamycin+Cytoxan and then 4 cycles of Taxol. This is the worst news so far. All the chemo horror stories are coming back to us now. Hair loss. Vomiting. He wants to start next week.

We decide to abandon the standard doctors-near-a-hospital method of care. We have a Mayo clinic here in Jacksonville and we hear great things about them. We set up some appointments there.

Bad Path report

Yesterday the surgeon's office called and said that although he was out of town they had the path report back and we had clear margins. Today though Dr. Hartigan called with much worse news. The margins were indeed clear but less than a quarter millimeter thick. To most oncologists this is nearly a positive margin.

Worse still they found 7mm of tumor and it had "angio-lymphatic invasion", also called "lymphovascular invasion" or LVI (see definition here). It isn't clear just what that will mean but we're scared that our node-negative status is in jeopardy and chemo might be in our future.

We have no idea how the tiny 7mm (pea sized) remaining tumor would show LVI while the large 23mm tumor we took out at lumpectomy had no LVI in it.

And yet more bad news they said our cancer was "multi-focal" so had many small areas of invasive cancer instead of a clearly defined lump.

None of this sounds good to us.

Mastectomy

Today is surgery #3, an areola-sparing mastectomy or ASM (pubmed entry here). Not to be confused with a nipple-sparing mastectomy, an ASM takes the central part of the nipple where the milk ducts are but leaves the colored skin that is the outer areola. The breast tissue beneath is completely removed but no other skin is taken. Many surgeons will want to re-excise any previous scars (e.g. lumpectomy) too. This will leave me with a scar or two but hopefully a near-normal looking breast and nipple.

We had our plastic surgeon put in a tissue expander put in at the same time and slightly filled to give me some shape.

Joseph Hartigan was our surgeon and Paul Scioscia was our plastic surgeon, both did excellent work.

---

---

---

Mastectomy Types
Incision for modified radical mastectomy	Scar following surgery
Incisions for skin sparing mastectomy.	Scar following surgery.
Incisions for areolar sparing mastectomy.	Scar following surgery.
Incision for nipple-sparing (subcutaneous) mastectomy.

MRI Day

Today was a pain. We spent an hour waiting for an MRI and then 45 minutes sitting perfectly still while they did an MRI of both breasts, both with and without contrast. We're looking for any reason to do a mastectomy on the left breast too. The results take 10 days but there's nothing showing on the left side. The bill for the MRI is nearly $5,000.00.

Meet the new surgeon

Today we met our new surgeon, Dr. Hartigan. It turns out he's not so new, I had a cyst removed by his partner a few years back. He says we're good candidates for an areola-sparing mastectomy (ASM). He also says that most Europeans don't do mastectomies like we do here, they almost always leave the nipple or the areola. We're also happy that he and our plastic surgeon will be able to work together in the same operation. He says we need an MRI bad to check the other breast for cancer, we agree and couldn't believe our old surgeon didn't want one.

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.