Fiber Folly and other Obsessions

pathology in - looks good

I finally got the pathology yesterday, Wednesday. Dr. Z did not call with the news last week (sec'y told me results hadn't come), and this week she was out. I had an appt with her partner for a wound check Tuesday, which they cancelled and rescheduled at last minute because he was tied up in surgery - for Wed. So I go in yesterday - and this doctor is cute as a button, by the way. Basically, nothing in the lymph nodes, one approx 4 mm area of DCIS immediately adjacent to where the other speck was removed previously, and also attached to a papilloma! 

So there was a papilloma in there that may have been causing the original bleeding, but it hadn't recurred after January surgery. I don't understand why the DCIS was associated with the papilloma, or why it didn't all come out when she removed the duct last month (questions that occur to me on reading the report at leisure). Also what about that 3.5 cm area of "activity" that showed up on the PEM - presumably she took all that tissue out but there was nothing of interest in there to the pathologist.

So this is all good news. In the meantime I've had quite a large chunk of my left breast removed (partial mastectomy, surgical report said!), and a lymph node or 2 removed (I think the report said 3). The breast incision is quite long, but it actually is not bothering me much. The incision and area where she took out the lymph node is a bit bothersome - there is swelling, I guess fluid build up, where the lymph node was removed - like someone stuck a roll of quarters under my skin. And the nerves were cut, so there are nervy irritating feelings under my arm and down my arm. So I guess that will take some weeks or months to resolve completely. I have been sitting around with cold packs under my arm when I can and that does seem to reduce the swelling and make it feel better.

I asked him about exercise = I guess swimming is out until the wound heals more (don't want the incisions to soak in water), but other exercise is ok, although his first reaction was "no". But eventually he said I probably wouldn't hurt myself, but it might not be a good idea to go jogging or lift heavy weights - too much bouncing and pulling on the incisions. I told him I was already riding my bike and not having problems with that. So I guess I'll wait a little while to do anything more than that. 

Not much more to report - I have an appointment on Tuesday for my "simulation" so they can take all the measurements and get set up for the radiation therapy.

still no pathology from surgery on monday...

Well here I am 4 days post-surgery, and I am itchy and a little sore, but feeling better every day. My throat was sore for a few days because they intubated me for the surgery (had not done that last month), so had to get over that. 

Wednesday (2 days post) I rode my motorcycle to UH and walked with my backpack for about a mile on campus - it didn't bother the incision under my arm, but actually the bouncing with the walking did bother me a little.

Today (Friday) I thought I could handle a bike ride, which went fine! Didn't bother anything - of course all I'm doing is leaning on the arm, rather than actually using it for much. 

My range of motion is fine with the arm, although they say you might be stiff and sore for quite a while. Doesn't seem like it will be a problem, but I'm going to wait until next week probably before getting back with my personal trainer!

So no results yet - just hoping that I don't need any more surgery, and that I won't need chemo! Dr Z will be out next week but I have an appointment with her partner Tuesday for a wound follow up, and I assume I will get the results no later than that appointment.

post lumpectomy and sentinel node biopsy

So the surgery was today, and here I am at home at 7 pm feeling fine, and not needing pain meds (knock wood!) There were two wrinkles to the day:

just as we were getting to leave (9:10 am), I get a call from radiology from St. Lukes wondering why I wasn't there for my 9 am appointment! As far we I knew, I had to be in pre-op at 10. I thought they were calling about having the "wire locs" put in - which are wires that would be put in pre-surgery, using the mammograms as a guide, to point to the lesions. Dr. Z had said that I would have that done pre-surgery (she said day before), but then later, after all the imaging was in, she said she wouldn't need them. So as far as I knew that was off, and that's what I thought radiology was calling about this morning - somebody had put me on their schedule and then not taken me off. So I told them Dr. Z had told me I didn't need to do that. Hang up the phone, and we proceed to St. Luke's Tower. 

On the way, Larry points out to me that the letter Dr. Z's office sent me says that I should go to a Bertner address, rather than the address for St. Luke's Tower, which is where I had been TOLD the procedure would be. So he's driving to this Bertner address, which I looked up on my iPhone, and that address was St. Luke's HOSPITAL, not St. Luke's TOWER. OMG. So I called Dr. Z's office, and after putting me on hold to check, the office person told me to go to the Fannin address, St. Luke's TOWER. OK. Mistake in the letter. (This was at 9:20 am or thereabouts).

So I get to pre-op for day surgery and they get me all ready - all the paper work, questions, and they get the IV in. Then they bring me cell phone, Dr. Z wants to talk to me. So Dr. Z is on the phone, and wants to make sure we "are on the same page", brings up notion that SNB (sentinel node biopsy) is optional, that it would be very unusual for the lymph nodes to be positive given what we know, and she thought it was the new guy, Dr. Morkas, who had suggested it, she herself wouldn't have suggested it. I point out that actually Dr. Oh had suggested it as well, and I was prepared for it, I thought it made good sense to check to see if the sentinel node was positive. Then we could decide what to do... the axillary node dissection or not. So OK, well in that case, I needed to go to radiology - radiology has to map the node before surgery! OMG! That's what they were calling about this morning! So that meant surgery would be delayed until that was done! Aw SHOOT!

So I did turn over in my mind, well, maybe we don't need to do SNB after all and go through all that extra fuss, but jeez, I had expected to do it and I thought we should just do it. I would feel like we hadn't checked everything if we didn't do SNB. So away I went to radiology, across the street to St. Luke's HOSPITAL, in a wheelchair, looking like a real hospital patient in my gown and sock slippers.

The sentinel node mapping, it turns out, is not a quick procedure - you are injected with dye (in the breast, the area where the lesion is), and then they take pictures to see which lymph node the radioactive stuff from that area of the breast goes to first - that is the sentinel node, the one they want to analyze. So you are injected with dye, take picture, and then wait 30 min, take another picture, and so on, until they see a lymph node light up. The nurse said it could take 4 hours! OH NO! SHOOT! So much for 12:00 surgery (it's 11:30 by now). 

So she shoots me up (uncomfortable, painful, but not horrible - 2 lengthy shots in the breast), and they take a picture (with a PET scan like thinger, but it wasn't a PET scan). Then they offer that I can stay on the bed for 30 min, or I can walk around. Well I was ok chilling on the bed, but then she said that it might speed up the dye getting to the node if I was moving, and even massaging the armpit and swinging my arm around. So sure, let's walk! So I walked up and down that little hallway, endangering the safety of those techs and nurses, and sure enough, when she took the next picture, the sentinel node had lit up, so we were out of there relatively quickly (about an hour!). She marked it on my skin with a Sharpie and sent me back with a film of the image (in the wheelchair of course). 

So by the time I was back at pre-op it was probably... 12:45, some waiting for her to make the film, waiting for someone to come pick me up, and then it's a little bit of a hike back over to the Tower from the Hospital.

(Larry is with me all this time, bless his heart, bored silly I'm sure.)

While I had some time to think trying to get that lymph node to light up, I realized something - that nobody had pointed out to me before, but I think Dr. Z was alluding to it when she talked to me earlier that morning - since they had only (thus far) found non-invasive cancer, it was a reasonable choice not to do the SNB. The topic of the SNB came up when my lymph nodes glowed a bit on the PET scan, but all the dr's said that was PROBABLY because they were inflamed from the recent surgery. But Dr. Oh and Dr. Morkas said that it still should be checked out, that an SNB was indicated. Dr. M. even said that sometimes cancerous lymph nodes don't show up on a PET scan, so it was good to check if there was a suspicion of invasive cancer. 

So what I snapped to was that I could have elected not to do the SNB, and waited for the pathology from the breast tissue to come back - if it came back invasive, THEN we could do the SNB. So if I had thought that through (or if someone had explained it to me like that) I probably would have chosen that. So now I am minus a lymph node, and have an extra incision and all that that entails. Probably it's not a big deal, but I think I probably would have chosen otherwise. Not doing it today didn't mean I wouldn't have it done if I needed it, but that I would only have it if I needed, not if I just probably needed it.

So I have three doctors for this thing, and they are all helpful and kind, and informative, but somehow some things get left out, and it is up to me to put it all together! (But I already knew that.)

Anyway in the end... surgery done, I feel pretty good, I'm sure I'll be uncomfortable for several days, and we'll see what the pathology says, should know by Wed or Thurs of this week.

ready for surgery

So.. this past week I had appointment with Dr. Morkas the oncologist. He was helpful and had some insights, but basically he doesn't swing into action until we get the pathology after the surgery and he advises what medications to take (chemo and/or tamoxifen). 

Big deal this week was the article in the New York Times which said that now it looked like, for women with early stage cancer, it was not advisable to remove the lymph nodes if they are positive for cancer. You do a "sentinel node biopsy" to find out if it is positive (removing 1-2 nodes), and then normally, the rest on that side would be removed if the sentinel node(s) turned out to be positive. Now they are saying that removing the nodes doesn't result in a better result... the results are equivalent whether you leave them in or not. All patients with positive lymph nodes get chemo, and the chemo apparently can destroy the cancer in the lymph nodes just fine. So fine... nobody had mentioned this to me!

The issue is that removing those lymph nodes can cause problems: lymphedema.

Dr. Z had told me that she would do the "axillary node dissection" during the surgery - the sentinel node is sent to pathology, and if the preliminary results are that it's positive, the rest are removed right there. 

So I call Dr. Morkas back and have a very confusing conversation - he didn't seem to relate this question to my situation, since in fact it is highly unlikely that the sentinel node will be positive. But if it IS, Dr. Z will remove the other lymph nodes! But he did say that his hospital had already changed their practices based on the preliminary results of the study. 

So called Dr. Z and she did say she recommended the axillary node dissection, that the standard of care had not changed. But I told her I would prefer that she not do that on the off chance the sentinel node came back positive, and in that case I would get some other opinions. We could always go back and remove them later.

So I've done the pre-ops and I'm ready to go on Monday!

In other news I biked 55 miles today in the "pedaling the prairie" ride which left from Waller county Fairgrounds... now I'm sore! and really tired. Can't take ibuprofen because of the upcoming surgery!

all tests in, ready for next surgery

So the bottom line from the past week is that the test results confirmed the 2 other (3-5 mm) lesions in the left breast, and the lymph nodes on the left side were glowing a bit, enough to warrant a sentinel node biopsy, but not enough to really think it was cancer. Dr. Oh said that it was common for the lymph nodes to be reactive after surgery, and she actually said it was 95% certain it was not cancer in the lymph nodes. (No other cancer seen anywhere else.) So it was actually a relief - I was afraid that the lymph nodes would clearly show cancer, or even that another cancer would show up somewhere else in the body. 

I did talk to Dr. Rock, the plastic surgeon... Tuesday? and we basically talked about the TRAM flap vs. implant. The TRAM flap gives better cosmetic results, but it's a much bigger surgery, longer recovery, and you do cut the ab muscle! so.... no. The implant is a long process... place the expander... have several expansions in the office... replace the expander four months or so after last top-up... then correct the other breast to match, and craft the nipple. Takes a year or so. So I asked him to schedule a time w/ Dr. Zimmerman to do the implant with the mastectomy, and we set a tentative date of the 14th.

Not super happy about having an implant (something bolted on), and the long process, but fairly certain mastectomy was the way to go.

Out of the blue, I got a call from an oncologist's office (Dr. Morkas) telling me that I had been referred to them by Dr. Z and Dr. O, and needed to set up appointment. Which I did. But... WHY? Now I was all worried... because this is before I had gotten the results from Dr. Oh. Was it horrible? Was my body riddled with cancer?

Because of the weather, the appt w/ Dr. Morkas will be Monday. Today is Thursday, when I met with Dr. Oh to go over the test results. She said she referred me to the oncologist because of the lymph nodes, although I think she was surprised that they had already called me. So I probably don't really need to see him until after the surgery, but it will be good to get his opinion on the lumpectomy vs. mastectomy decision.

Dr. Oh recommended the lumpectomy, because she thought the result in my case would be cosmetically acceptable, and according to her, the research actually shows slightly better recurrence rates with radiation, she thinks because the whole breast region is treated, as opposed to with the mastectomy with necessarily leaves some breast tissue. And since I actually would like to reduce the size of my breasts, she thought the lumpectomy played into that. So my current thought is lumpectomy and radiation. Larry likes that idea too. (He went with me to the appt w/ Dr. Oh.)

I feel so relieved to have the test results, and that they are pretty encouraging that this is still stage 0 or stage 1. Now I just have decide for sure about the lumpectomy vs. mastectomy, and get the surgery scheduled (and talk to oncologist).