High Calcium and Parathyroid Disease

TromboneAl said:
Getting a second opinion will involve hours of travel -- do you think it's possible to have the medical data sent to someone, and have a phone consultation??
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Teleconsultation is very common these days. I'm not sure about the logistics of referral in your system. If you are paying for it I guess you can consult anybody you want :) but it would at least be courteous to involve Lena's own doc in a referral. Also, if the physician being consulted is out of state, he or she needs to hold a licence in California and there may be liability issues. As to whom to consult, I'm sure Rich_in_Tampa would be able to advise. The Mayo Clinic would be a good start, but CA is larger than many countries and there must be many experts in this area within the state. And of course you need to check what Lena's insurance would cover.

What does Lena want to do?
 
Lena definitely wants a second opinion or consultation, and is currently leaning towards surgery. She is of course the boss on this issue.

I'm also leaning towards surgery, but would love to be convinced to watch and wait.
 
We had a consultation with a local surgeon. He concurred that we should have surgery, so the decision will be whether to have him do it (he's done about 100 over his career -- he's 68) or someone who does many more of these ops down at UCSF. Sounds like the latter is the better choice.

I asked "Will this go above the $5,000 deductible?" Silly me, the total cost will be about $20,000. So that means it's the same cost no matter where we have it done -- it will just be more hassle to go down the bay area.
 
I don't know anything about Lena's illness, but I imagine the past few weeks have been difficult for the two of you. :(

Perhaps reaching this decision and moving forward will take some of the pressure off. Keep us updated Al.
 
This is one of those procedures I would definitely go to a center where the surgeon does a lot. I'm guessing at a specialty clinic like UCSF their surgeons may do 100+ a year rather than in a career. RIT may have more insight on this as he likely referred many over his career. I see the rare complications - usually hypocalcemia - that may resolve but sometimes does not.

DD
 
bbbamI said:
I don't know anything about Lena's illness, but I imagine the past few weeks have been difficult for the two of you. :(

Perhaps reaching this decision and moving forward will take some of the pressure off. Keep us updated Al.
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Thanks, BBBamI. It's funny, but we've been able to not think about it too much during the wait for the appointment. That is, I was able to compartmentalize it by thinking "Well, it's probably going to be fine, and will simply be a bit of a hassle for a while. I don't have to make any more decisions until after we get the second opinion, so I'm not going to think about it." There were days that I didn't think about it at all.

Has that happened for you, in waiting for the next PSA test result (any day now, right?)?

- Al
 
TromboneAl said:
Thanks, BBBamI. It's funny, but we've been able to not think about it too much during the wait for the appointment. That is, I was able to compartmentalize it by thinking "Well, it's probably going to be fine, and will simply be a bit of a hassle for a while. I don't have to make any more decisions until after we get the second opinion, so I'm not going to think about it." There were days that I didn't think about it at all.

Has that happened for you, in waiting for the next PSA test result (any day now, right?)?

- Al
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Yes...in a way it's been that like for me as well. It seems my brain had gone into overload with everything that has been going on the past few months. Something had to give...so I find myself cautiously optimistic these days. Somehow this has taken some of the pressure off...trying to roll with flow...one day at a time.

DH had the PSA done today as a matter of fact. We should have the results in a few days.

Heh...it's a great life if we don't weaken....:)
 
We'll hold our thumbs for you (Swedish version of crossing fingers).

The problem with being able to forget something is that moment when you remember again.
 
I hope her surgery goes well. When my parathyroid tumor was diagnosed, the Endocrinologist referred me to the surgeon with the most experience since the parathyroid is not always located where it is expected to be. He ended up having the explore to find mine, but it all turned out well.
 
An update: A surgeon down at UCSF does 200 of these operations per year (as opposed to the surgeon here who has done only about 100 over his 40-year career). My bass player friend had the surgery done by her, and was impressed. Using her will involve at least two separate seven-hour trips down to San Francisco (initial visit, preop, and op). She's in the Blue Cross network, so the cost will be the same ($7,500 total) except for the travel expenses.

I think the choice is pretty clear. If we had it done locally, and there were complications, or Lena ended up with a permanently hoarse voice, we would never forgive ourselves for taking the procedurally simpler choice.

Also, I will have much greater peace of mind knowing we are having an experienced surgeon doing the work.

The choice to do the surgery seems clear to me also, the last nail in our current doc's coffin. We will get the results of her official bone scan soon, but the other day she had a free one, and the result was -2.5 (borderline osteoporosis).
 
I'm glad to hear you made a decision that you are happy with and I hope the rest of her bone scan results are good. I had my tumor long enough to cause osteoporosis in my wrist and hips and osteopenia in my spine. I have another bone scan next year as a comparison to see whether I need treatment or not. Hope she can get a surgery date soon and put this behind her.
 
The ultrasound today confirmed the Sestamibi scan results, but showed three nodules on the thyroid which are "probably not cancer," so next week we get a biopsy of those, and wait for the results. Lena's mom had thyroid cancer, so...

Typical fun and games in healthcare.
 
Good luck Al and Lena on this. My DIL had nodules biopsied 3 weeks ago, and they were not cancer- so non-cancerous nodules seem common enough.

Ha
 
TromboneAl said:
The ultrasound today confirmed the Sestamibi scan results, but showed three nodules on the thyroid which are "probably not cancer," so next week we get a biopsy of those, and wait for the results. Lena's mom had thyroid cancer, so...

Typical fun and games in healthcare.
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My mother had thyroid cancer and I also worry about it; I think multiple nodules is a good sign vs. just one.

Lena is lucky to have you.
 
Al...I'm sorry you and Lena have to go through this. ...the waiting is tough I know. However you have a wonderful sense of humor and a logical way of looking at things.

Lena gets the very best from you...there's no doubt. :flowers:

....and I'll keep my fingers crossed for good results. :)
 
No thyroid cancer, yay! But they do want to check it periodically for some reason.

We have our first UCSF appointment for the parathyroid set up, but first I have to participate in that other ritual from the 1980's: faxing a copy of Lena's insurance card to the doctor.
 
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Al, I am very glad to hear of this clean bill.

Ha
 
Great news! I am sure you & Lena must be quite relieved.

Go and have a nice dinner to mark the occasion.
 
Great news Al!
 
Update: Next week we drive back down to San Fran (UCSF) for Lena to have the surgery.

Yesterday during a routine visit to a different doctor, the doc noticed that the high calcium had been noted in 2005. The doctor had made a note that it should be followed up by her GP, but it never was. So she's had six years of calcium being leeched out of her bones. She has osteopenia, but not too bad.

BTW, the way we discovered this is a bit interesting. We went to one of those health fairs a while ago, but they screwed up the blood analysis, and we had to go have more blood drawn. To compensate us, they threw in some extra tests, one of which was calcium.

Lena feels OK, but we are hoping that, as Rich said, she will feel even better after the surgery.
 
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