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CATs and PETs and things that confuse in the night.

May 30, 2010

[picapp align=”left” wrap=”true” link=”term=cat&iid=274803″ src=”0271/28389ade-ff2b-4b3c-9c93-33412fc50dce.jpg?adImageId=13043647&imageId=274803″ width=”380″ height=”254″ /]The oncologist called me at home with the PET scan results, which we did as a follow-up to the inconclusive C/T (CAT) scan.

Basically in the same place with just a little more information. The original lesion in the lung is definitely smaller (the C/T was inconclusive there), but there is a new lesion trying to grow next to it. So, we need to deal with that.  It seems to me very wrong that we’re just letting that tumor in my lung just sit there and potentially send out tumor cells. It makes no sense, so I told the doctor I wanted to have that OUT of there. So, I have the names of a couple of thoracic surgeons that I’m going to call on Tuesday after the holiday. The question is whether or not they’ll operate since many surgeons write you off after cancer has spread. They don’t want to do surgery unless it’s going to effect a cure. I think I can be very persuasive in my case, don’t you?

There’s also a new lesion on my T6 vertebra. I hesitate to call this “new” since I complained about pain exactly there before I started chemo in August, so I think it’s been there forever but this cancer is so slow-growing that it hasn’t been big enough to see on a scan yet. So, I’ll talk to the radiation oncologist about zapping that like he zapped my rib. That seemed to work well. There’s also something reactive in the muscle around where they zapped my rib and I forgot to ask the doctor what that could be. Quite often that kind of thing is just residual damage from the radiation, but I’ll run that by the radiation oncologist when I see him.

What else? Oh, the naturopath thinks the surgery idea is a good option, but I’m going to see her specifically to go over these scan results in detail. She has some alternative ideas including intravenous vitamin C, which is controversial but fairly cheap compared to the chemo drugs, which apparently haven’t worked, so what the heck. The naturopath says she has seen some cures through the surgery approach, but it needs to be approached very cautiously. Also, the oncologists in her office aren’t quite as tied to a specific hospital regimin as my current oncologist is, so they’re more flexible about using conventional drugs “off label,” and have found some ways to use things that work pretty well.

My current oncologist is headed off to the yearly cancer doctor conference where he said he’d bring up my case since it’s unusual and interesting. I hate being interesting, but he’s likely to get some good ideas. This is very considerate of him given the number of patients he has.

[picapp align=”right” wrap=”true” link=”term=guinea+pig&iid=5163093″ src=”b/2/1/d/Abyssinian_guinea_pig_3f2f.jpg?adImageId=13043625&imageId=5163093″ width=”234″ height=”312″ /]So, there’s the dilemma laid out. My gut feeling is that zapping things and removing them where possible with this slow-growing cancer might be just the way to go. Slow growing cancer sometimes does not “drink” chemo fast enought to kill it, and my next option chemo wise is to either up the dose of the current chemo (to which I said “$*#(*)&%@ NO!” quite spontaneously when the oncologist suggested it) or go on some other chemo for another 9 or 10 months to see if THAT one works. So then you become some sort of extremely fatigued guinea pig while they experiment to see what will work or not. Hank commented that he had no idea going into this how inexact scans are and how little oncologists really know about treating advanced cancer. He’s exactly right. You just have to get all the input and prayer you can get and then figure it out on your own.

The thing that is nagging me right now is that Avastin, one of the drugs I’ve been taking, is suspected of changing the nature of slow growing cancer once you stop taking it  — the naturopath says she’s seen this happen, the oncologist says he hasn’t. So, Avastin could change this couch potato into a raging maniac; however, I have to be off it for six weeks in order to have any kind of surgery because it works on your blood vessels and keeps wounds from healing. Yet another dilemma. It’s  possible after surgery to go back on the Avastin since it does not cause fatigue — just high blood pressure and possible kidney failure.

I fell pretty tired right now, which always scares me, but we had a long day yesterday and I’m also starting to get a sore throat. A virus will usually make one feel tired, eh? Meanwhile, I’m off chemo but still keeping up with doctor visits. They’re just different doctors. Oh well!

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11 Comments leave one →
  1. Sarahtee permalink
    May 30, 2010 1:33 pm

    Thanks again for the update, Jill. More thoughts and prayers from here as you decide the next steps…

    Sarahtee xxx

  2. Penny permalink
    May 30, 2010 5:48 pm

    My love and prayers are with you. Cyber hugs to you from me across the miles from the Midwest.

  3. May 30, 2010 6:21 pm

    Thanks for the update Jill. You really are an inspiration to so many of us :o)

    Beck

  4. Ellen permalink
    May 30, 2010 7:35 pm

    Go with your instincts, Jill. Go for the surgery!!!!

    Ellen

  5. mom permalink
    May 30, 2010 9:24 pm

    One day at a time, my dear one. You will make the right decision with God’s help. Love to you and hugs too. Mom

  6. Sandy permalink
    May 31, 2010 11:45 am

    Go with what feels right to you Jill. If it’s the surgery then do it!

  7. Marcia (fam) permalink
    May 31, 2010 8:24 pm

    thinking of you (((hugs)))

  8. E Lis permalink
    May 31, 2010 8:59 pm

    Continued thoughts and prayers!

    Much love… Lisa

  9. June 1, 2010 9:27 am

    You’ve convinced the internet community — now work on those doctors and get them to remove the pieces you don’t want. 🙂

  10. Mimi permalink
    June 1, 2010 12:02 pm

    Jill — I have to agree with the comments here urging you to go with what seems right to you. You have your own biofeedback that the doctors will never be able to measure. I’m so sorry that you’re going through such trials right now — I haven’t met you personally, but I know that you’re a very loving and lovely person. May God grant you peace, rest and wisdom to get through this. Praying that you will have a miraculous healing and that all the medical personnel will be baffled as to what went incredibly right.

  11. August 6, 2010 6:46 am

    hope all is going as well as it can for you right now

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