Well, That’s Clear as Mud

by Julie
Published on: January 26, 2012
Comments: 3 Comments

We just heard from Payal.  She said Phenon needs radiation.  I have many, many questions before I feel like that’s a final decision, though.  Here’s the deal:

The PET scan result is negative!  That’s a very good thing.  It means the cancer isn’t doing anything.  This is the clear result we were looking for.  A very big hooray!

But the CT scan result is not at all what they wanted to see.  At last scan, Phenon’s tumor had shrunk to 60 percent of what it had been.  It needed to reach 80 percent shrinkage to avoid radiation.  The shrinkage remains at 60 to 65 percent after the last two rounds of chemo.

Payal said that the next round of research on Hodgkins will be to determine if kids in Phenon’s position need radiation after all.  (This was apparently being planned by committee this morning before they had Phenon’s result.  It’s apparently the next big question.)  Payal hypothesized that, in 5 to 10 years, such kids will not be given radiation because they will learn it is unnecessary.  But for now, they don’t know for sure that it is unnecessary.  And she thought it would put everyone’s mind at ease if Phenon just goes ahead with the radiation.  I’m not so sure it will put anyone’s mind at ease if they do radiation.  Payal said she thought Phenon would worry if she still had 40 percent tumor in her lungs and she thought it would be psychologically better to just treat it.  “We owe it to Phenon to treat as much and aggressively as possible, even if later we learn the radiation wasn’t necessary.”  Hmmm.  I’m not so sure.

Phenon’s big question is:  Couldn’t we just leave it be and get a PET scan again in 6 months or a year and see if it’s still dead? This seems significant to me given what an incredible ordeal each PET scan has been.  Indeed, Phenon decided to write her own post about the hideous experience yesterday.  She hasn’t gotten through it yet, but it was unpleasant.  And she’s asking to do it again to avoid having to do radiation.

I’ll be e-mailing in a list of my own questions tomorrow.  A major one is that radiation therapy significantly increases the risk for breast cancer, among many other things.  The National Cancer Institute recommends that girls who receive radiation therapy for Hodgkins start getting annual mammograms starting 8 years after treatment.  That means Phenon would have annual mammograms starting at age 21.  Breast cancer already runs in our family, since my mom has now had it TWICE.  Are they sure enough that radiation is crucial to run the risk of that?  Plus the risk of that many mammograms across her lifetime?

I really am glad the PET is negative, but this feels like a much more difficult position than the decision about chemotherapy.  There was no choice about chemo, and, while the short-term side effects are nasty as all get-out, the long-term side effects are primarily in the areas of processing speed and Executive Functioning.  We know how to handle that.  That’s been my specialty as a psychologist, after all.  Radiation is a different animal.  The short-term side effects are little to none, but the long-term side effects are quite significant.  If the PET had been positive and the mass was 60% there would have been no question about proceeding with radiation.  Or if the PET was negative and the mass was 80% smaller it would have been an easy finish.  But this is messy.  And really important.  We need to understand thoroughly and well. It would be tremendously helpful if y’all would post your questions, too.  That would help us think things through and make sure we are getting all of the necessary information to help make this vital decision.  So, if it was you, what would YOU ask?

3 Comments
  1. Jessica says:

    There’s no harm with getting a second opinion. When I had my recurrence, we went to Sloan Kettering to get a second opinion. We ended up staying at Children’s, but at least we felt like we’d done our due diligence. If it were me, I’d do it. If you wait and the tumor starts growing again, you’ll have lost valuable time. Maybe ask about stats on patients who’ve had her same planned treatment of radiation — how many have had secondary cancers?

  2. Rebecca says:

    You are wise to consider the ‘down the road’ consequences of radiation. Putting together your bullet-list of questions and breaking them into areas specific to Phenon (e.g. family history of breast cancer and/or cardiovascular disease as risks for both are associated w/ radiation) seems a reasonable first step. Then, take that list to your current team — and go somewhere else for a second opinion w/ the same list, opinions of ‘home team’ and compare.
    Something else to consider would be calling NCI to see if they might enroll Phenon in one of the natural history studies at the NIH Clinical Center. This probably won’t be an immediate help but could be good for follow-up. These studies don’t generally involve any additional treatment — but often give the benefit of having some of the greatest minds in a particular disease/condition discuss your case and provide their assessment. My mom was diagnosed at the CC and is enrolled there (for a different condition) and has had nothing but raves for her experience over the decade +.
    Patient Recruitment: 1-888-NCI-1937
    Hugs,
    Rebecca

  3. Victoria Nelson says:

    Will it affect how much school she is able to attend?

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