Medical guessing games

I need a secretary (er, make that “administrative professional”) to keep track of all my medical stuff — the notes, the meds, the appointments, the instructions, etc. And I needed that secretary yesterday when I saw my oncologist for the first time since mid-January. So much had happened that he wanted to know about, and I had a bunch of questions saved up for him. It all amounted to a ton of details flying back and forth. Details I wanted to remember. Needed to remember. But I didn’t take notes because I wanted to give him my full attention. Besides, it’s routine to get a four-to-six-page printout after each appointment, detailing everything.

Turns out not everything I wanted to remember was on the printout. (A lot of it is boilerplate about making appointments, tips for healthy living, etc.) For example, he suggested I add a vitamin D supplement to my regimen because it sometimes helps with the muscle and joint pain caused by aromatase inhibitors. Up to 4000 IU a day, he said. Since my calcium supplement includes 2000 IU, that leaves 2000 for me to add. Done, as of tonight. (But it wasn’t mentioned on the printout.)

I told him I’d seen my PCP a month ago and she had ordered some lab work. It showed my cholesterol is still normal (often goes up when estrogen is discontinued) and so is my thyroid (might have been damaged by the radiation, so she wants to check it three times a year). She suggested I cut my diuretic in half to reduce my dizziness problem. (I did so for two weeks until edema became apparent so I went back to a full dose; the dizziness has not returned.) And she also mentioned more than once that I should not be discouraged by my slow recovery of strength and energy because it takes months to fully recover after cancer treatment.

Moving on (I had a list) I mentioned to the onc how annoying my hot flashes are — roughly 4-7 a day, lasting maybe 5 minutes each — he suggested taking grape seed extract (see comments), probably the only possible remedy I haven’t read about in the last six months. But apparently I’ll have to go to a health food store (or good ol’ Amazon) to find it because when I checked at the supermarket today, I didn’t see it. It’s just anecdotal medicine, something that might or might not help. But I’m game.

Next I asked about his long-range plan — what sort of follow-up, tests, appointments, etc., I should expect. He said I’m to see him about every four months. I’ll continue with annual mammograms, but there won’t be any routine CT scans looking for recurring cancer. That concerns me. How will recurrences be found if not with scans? Pain, he said. I’ll feel it.

I didn’t find that terribly reassuring, but I suppose zapping me with unnecessary scans isn’t a great idea either. That isn’t the issue, however. He explained that insurance only pays for three such scans for breast cancer and I’ve only got one left. He’d rather not use it without a good reason. But he admitted he’s still debating whether to use it for one more look at the nodule (fibrocyst) in my lungs that was seen earlier. Ideally, it was innocuous and is gone, but …

He also mentioned that he’s talked to several different pulmonologists about my case and that the findings from my bronchoscopy were unexpected — unusual enough to possibly be reportable. I didn’t understand exactly what he was referring to, but if it’s reportable, go for it (as long as I don’t have to endure another bronchoscopy!). He laughed and said it always seems to be health care providers or their families (my dad was a doctor) that come up with unusual symptoms, conditions, etc.

It occurred to me to ask him if it was now okay to see the dentist again (pre-op instructions had said to see the dentist before surgery, since it would be some months before my immune system would be back up to snuff and it would again be safe to do so). He said not only yes, but yes, I needed to — after I get a bone density scan (bone densitometry or DXA). It will show if I’ve developed osteoporosis or osteopenia, common in postmenopausal women and people who’ve been treated with corticosteroids or radiation. I meet those criteria and several others and haven’t had any kind of bone density test since I signed up for Medicare (checked out fine then). If I end up needing some osteo med, the dentist will need to know about it, he explained.

But I wasn’t clear on everything. I need to call him back for clarification on how to proceed with my Aromasin (exemestane). It could very well be the cause of the joint and muscle pain I’m having in my fingers (as could plain old osteoarthritis). He said I could stop the Aromasin for two weeks to see if the pain stopped. If it did, then he’d probably switch me to Femara (letrozole) to see if it works better (not cause the joint pain). Of course, it could cause other side effects. I think he presented this just as an option if I wanted to try it, rather than something I was definitely supposed to do, but I need to make sure. Besides, if I stop the Aromasin right now and the pain stops, we won’t know if it was from stopping the Aromasin or from increasing the vitamin D. And if the pain doesn’t stop, how do we know whether it’s the Aromasin or arthritis?

Doncha love these guessing games?


*Note, Apr. 21, 2016: I just read that both joint pain and dizziness can occur during and after withdrawal from prednisone. The pain in my fingers started when I got down to 10 mg a day. A lot of dizziness then, too. Seems odd that none of the doctors mentioned this.

And still more remembered from yesterday: The doctor examined the back of my hand, around the knuckle that was hurting and between the big muscles that run down the back of the hand to each finger (they are very conspicuous in scrawny old hands). He said there was a lack of muscle there, probably caused by the prednisone, and that I should do exercises to strengthen my hands. He even mentioned yoga. I wasn’t aware there were yoga exercises for the hands, but it seems there are.




8 thoughts on “Medical guessing games

  1. philosophermouseofthehedge Thursday, April 21, 2016 / 6:50 am MDT

    First, cheers for the positive directions. Now I know what all that grape seed extract is about – it is on the shelves here – even Target.
    (I’m amazed you can remember so much without notes as the amount of information and complex discussions is bound to be tremendous – so hey, brain/focus working there)
    With every body being individual with none uniform or standard, and all these treatments, tests, and meds (that we really don’t understand how they work or all they do), it’s a wonder treatment is as good as it is with the trial and see methods. Anecdotal has worked for me for joint pain, but not husband. Just has to fine tune and tweak what works for yourself ( within reason and common sense – hey , but your doc said try it!)
    As a kid, people always knew you’d do something special – but picking weird reportable lung thing? HA HA
    Glad it’s going good, just in time for spring…it will stop snowing there sooner or later .

    • PiedType Thursday, April 21, 2016 / 10:06 am MDT

      I’ve been reading a lot about grape seed extract. Never been a big fan of assorted broad health food claims. But it seems there’s a lot of research going on regarding GSE. Some overview articles make it sound like it does everything but windows. My doc likely heard about it because one of the studies was done right here at the UC Cancer Center ( Naturally it’s behind a paywall. Univ. of Maryland a bit more open: I’ve read so much now it’s starting to sound like “just take the stuff; it’s bound to help something.”

      Hope you’re staying high and dry down there. Houston sounds like one big lake right now.

      • philosophermouseofthehedge Thursday, April 21, 2016 / 10:41 am MDT

        grape seed extract may be like the new apple a day recommendations – can’t hurt. Trial protocol is working for husband’s cancer. (Not in this vitamin trial, but our doc knows the study doc and we can get the stuff and pay for it ourselves, of course.) CU does a lot with med. research. My daughter worked in bio research labs with Alzheimer studies when she was there. It’s a great science school Few realize it.
        9 counties flooded here – rivers cresting, but water everywhere and more evacuations as it makes it downstream….and it’s still raining – 2 earthen reservoirs are holding but Corps will be releasing water very slowly in a few days. Storms at the minute, but clearing predicted tomorrow…until next week. We still haven’t been impacted so much in this bit of the world…seems like with housing going to be in tight demand, maybe it would be a good time to move…like to CO. HA HA
        The good thing – little political nonsense on the local stations – ahhhh..

        • PiedType Thursday, April 21, 2016 / 11:39 am MDT

          Sounds awful down there. Glad you’re safe where you are. You might want to think twice about that move, though. Housing in greater Denver is scarce and extremely overpriced right now. But hey, it’s a big state …

        • philosophermouseofthehedge Thursday, April 21, 2016 / 7:20 pm MDT

          And your taxes are much much lower than ours – even with an income tax. Housing prices out of the city about the same (zillow and relatives locally there are helpful – and it is a big state)…you have to pay to be in a safer area here…and one that doesn’t flood HA HA. We’re just mulling over options. There’s always the issue of doctors.
          Big storms this morning but the afternoon was Ok to let Molly run and play in the field – she needs the exercise and is no problem in the shower. Hopefully the system has move east. Webbed feet – ugh!

        • PiedType Thursday, April 21, 2016 / 8:02 pm MDT

          There’s plenty of high ground here if you get tired of dodging floods. Of course you’ll have to trade your webbed feet for snowshoes … FYI, lots more snow south and west of downtown. I’m north and a little east and get very little, relatively speaking.
          Weatherman says your front has moved on so maybe you can dry out now. Hope so. You’ve had enough!

        • philosophermouseofthehedge Friday, April 22, 2016 / 7:42 am MDT

          People have snowshoes/sleds to use in the neighborhood sometimes – here they have wave runners and paddle boards. HA HA Finally sunny! (and not even too hot…yet)

"You don’t have to say everything to say something." ~Beth Moore

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