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still collecting info

March 28, 2018

We met with the surgeon Monday and I thought I’d be able to give an update later that day, but the picture has gotten cloudier since then.

The appointment was good. One important piece of information – she did not think this was a recurrence, but instead suspected that this was something else that hadn’t been detectable last fall. She said this was comforting since a recurrence that fast would be bad. She also recommended a mastectomy, but said she would consider a lumpectomy under very specific conditions: there are 3 spots that are of concern to her. She would biopsy all of them beforehand, and then would require that I followed up with radiation. Initially, I felt like with 3 suspicious spots, I would be better of just removing the whole thing. What kind of crazy mess of breast tissue do I have that it grows not just one cancer but two or more?

She pointed out that my surgeon in the fall was probably operating (wah wah) under certain assumptions (like that I would follow up with radiation.) This may be why she didn’t do more surgery when the margin was so small. I know that we don’t owe a surgeon anything after they do their work, but I can appreciate that they do their work with certain understandings.

We talked about mastectomy and what we might find, how many lymph nodes she would want to take out… I don’t remember what else. She did an ultrasound of my armpit since there was some light (or whatever they call it) in there on the PET scan. She didn’t find anything unusual. It could have showing because it was the day after my biopsy and the lymph nodes were extra busy. That was a relief since lymph node involvement is a big determiner in follow up treatments.

She told me that if there is a chance I will do radiation afterwards, most plastic surgeons will want to wait to reconstruct so that isn’t something I have to decide now. That was a big relief since I haven’t even decided if I’m getting a mastectomy, much less what I want afterwards. We didn’t get into the specifics of mastectomy because I just don’t think I was ready for it. She said to go home and take a few days to think about it, and that she would like a decision by Friday.

Later that day, though, I called her asking some more specific questions about types of mastectomies. There are skin- and nipple-saving/sparing options. You can’t get a nipple saving one if you are delaying reconstruction since there won’t be anything to build it back on. They can save some skin though and she discussed different reconstruction options including using tissue from my back. It sounds terrible but she said it may be a really good option. Actually, it all sounds terrible right now.

During this conversation, though, she mentioned that she had looked at my pathology reports again and seen that the makeup of my current tumor was very different from the original tumor. I went back later and looked myself, and sure enough, they are different. The original one was grade 3, estrogen 70%, progesterone 70%. This one is grade 1, estrogen 5%, progesterone 0%. I had to google “how to read your pathology report” and several other things, but I could tell enough to know that they were different. I didn’t know, though, what this meant for me. Was this normal? Did they sometimes change after the fact?

I’ve spent the last 48 hours emailing and calling all three of my doctors. I talked to a PA today who told me that yes, this is a different manifestation. It is unusual, but not unheard of. And, the current one is less aggressive than the original one. It was comforting to think that maybe all the treatments I’ve done have actually dealt with the evil monster from the fall. Not that it’s great that I have yet ANOTHER cancer, but at least it doesn’t appear to be the same evil one.

I’ve also been trying to get some information about my medicine. In spite of sleeping around 8 hours most nights, I’ve been incredibly tired all the time. Tired to the point that taking care of my kids seems like more than I can handle (and Jonathan started a trip yesterday.) And if you’ve ever dealt with depression, sometimes it starts out feeling like that. Like you’re so tired you can’t even deal with life. I don’t want to go there, so I asked if I could switch back to the one that was working fine, but Dr. Z said something about interactions between Zoloft and tamoxifen. Wait it out for a few weeks and see if it gets better… Thankfully, I was able to call in reinforcements, and God has given me enough to get through and mostly enjoy each day. (This weather has been amazing!)

Today I talked to Dr. B who suggested that I go for the biopsies/lumpectomy/possible radiation. It got me thinking that since a mastectomy is a final thing, I should at least try to get as much information as I can before I go there. Biopsies are no fun, but they are a piece of cake compared to surgery. I called Dr. G to see about that, and her nurse said she wanted me to come in tomorrow so we could talk about it. I also left a message with Dr. Z to see if the change in tumor type/ lack of recurrence would affect his recommendation.

I’m trying not to feel rushed or like I have to get this done immediately. Trying not to think of the plans weeks and months out that could be affected by this. It’s hard living in a state of uncertainty though.

So here we are. It’s way past my bedtime, but I wanted to share what little we know.

On a total side note – if you ever want to feel like the funniest person in the world, make up knock-knock jokes with a kindergartener.

2 Comments leave one →
  1. Andy Zimmerman permalink
    March 28, 2018 21:00

    Hi Grace! Kim and I are keeping you in our daily prayers. I understand about the fatigue and all the rest of it. I’m two weeks down the road from the end of my chemo-radiation treatments and feeling a lot better every day. Recuperating for the surgery that will probably happen in late April or early May.

  2. Ruth Petersen permalink
    March 28, 2018 21:48

    Love you, thank you for the up date, they help me to know how to pray…rest well🙏

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