Inquiry/Response to Doctor Friend

November 25, 2015

Dear Karen>>
>> In / around this September (2015) - my voice abruptly changed
from normal to a rather guttural and weak sound, without the ability to
shout or sing and my having to work to be heard and consciously
stressing beginning and ending consonants. It is more frustrating than
painful. But I have people on the phone and in stores, e.g., who cannot
understand me at all and I have to get right in their faces to make
myself understood.
>> I have not been to MD Anderson since this occurred, but am
scheduled to go there on January 11th (2016), for my regular quarterly
checkup / CT scan.
>> I am awaiting the video observation and written notes from a
Memphis voice/ throat specialist doctor (not an md, a Ph.D.) to whom I
went for an exam.
>> I also saw a local, good ENT twice . . . He was of little real help,
but took chest X-rays and pronounced them normal. (That at least is
good news.)
>>
The voice Ph.D. Voice / swallowing Doctor is to transfer my vocal
chord video to a disk and send it to MDACC. (I have been waiting for
him to do this for a month! I cannot get him to get it done, despite
repeated (polite) supplications. Again, I wonder how people with less
tenacity, education and family support can manage their own cases!).
Anyway, I want to get his analysis and endoscopic video and audio and
send it to you, or Vanderbilt, and Houston so that whomever I see will
have advanced information on my condition.
>>
From what I was able to see and understand during his
examination, one of my vocal chords may have stopped working, or is
stiff and fibrotic, but I am not sure of any full or discrete diagnosis. (I

presume the difficulty is on the left / radiation side.)

>> I feel like I am getting advice from lots of people and help from no
one. I phoned and wrote to my docs in Houston, and they
uncharacteristically do not seem to be very concerned, or at least
otherwise occupied. (They are great and I am expressing frustration,
but I am nevertheless an enthusiastic supporter of them and what
they've done for me.
>>
The oncologist at MD Anderson told me that basically this is a
matter that i should discuss with my surgeon, as these types of
problems fall in the surgeons' bailiwick. I wrote to the surgeon and told
him that I was frustrated, but would wait til January. And unless he
regarded the matter as urgent or progressive, I'd see him then. Since I
didn't hear back from him, I guess I am to conclude that my voice
degradation is just one more late onset sequelae. Either that or I just
have to push harder . . . probably both.
>> To remind you, for the record:
>>
- I was in remission mid-June 2014
>>
- My cancer recurred late August 2014, apparently a VERY
FAST recurrence for this type of cancer.
>>
- Surgery - radical neck - in early Sept 2014
>>
- Re-chemo and re-radiation . . . October through November
2014
>>
- I've had no additional treatment since Nov 30, 2014.
>>
>>
Various folks are encouraging me strongly to go to Vanderbilt
and get the advice of Robert Ossuf and/or James Netterville.
Vanderbilt is only a 3 hour drive where I can stay with daughter Agnes
or son Luke . . . vs. 11 hour drive to Houston, where on a typical visit I
have to consume almost an entire week plus hotel bills to make my
quarterly - or more often - visit. If I fly to Houston and have 2-3 days of
sessions, the week is gone, hours spent in travel and waiting around the
MDACC clinics.
>> Btw, I also recall that in various places in Boston- Dana Farber,
Mass General, Harvard , elsewhere ? - which supposedly sport superior

voice docs.
>>
>> Meanwhile, as I sit an wait for things to happen - something - my
anxiety increases.
>>
>> Plan: (?) Thoughts:
>>
- make an as appt at Vanderbilt and try to see Ossuf and or
Netterville before Christmas. (Both?) Do you know personally either
Ossuf or Netterville? Or by reputation?
>>
- Of course, push asap the Ph.D. Voice specialist to send his
files and video and diagnosis to mdacc?
>>
- Get a 2nd or 3rd opinion from someone in Boston that you' d
recommend?
>>
- January 11th fly to Houston and see what dr. Sturgis, my
surgeon, says?
>>
- Forget trying to speed up the process or complicate it with more
/ different physicians / opinions?
>>
>> I am at ground zero, because I know nothing about my condition
nor its expected long / short term consequences.
>> - should I be worried / concerned?
>> - is my condition frequent, rare, usual, uncommon.
>> - are there good interventions for this condition?
>>
>> I've been told by laymen that there are different physical
interventions that can improve my condition.
>>
>> Otherwise, physically I am pretty good and the vicious neck and
shoulder cramps and pain have faded. Unfortunately, I continue to
experience frequent headaches and jaw pain and jaw muscle spasms,
nearly debilitating. I do work out regularly. Usually, despite feeling like
crap, I am mostly able to jump-start myself and get tasks done, but who
knows if that is psych, just myself, or treatment related.
>> Perhaps I should just be sending this note to myself, as I should be

capable of making decisions .... Since I can compose the narrative and
arrange the issues!
>>
>> Cheers,
>>
>> Michael
>> Happy holidays and Merry Christmas!
>>
November 30, 2015
Note to Me from a Doctor Friend about the Disappearance of My
Voice
>
> Hello Michael,
I got your note and of course I'm sorry to hear that you are so
miserable.
>
It's quite likely that this is simply a sequelae of therapy and there is
not much that can be done beyond perhaps some voice PT/training and
working with what you have. But that being said it can't hurt to get other
folks' opinions, assuming you have the time and patience to deal with
more physicians and other care providers. The fact that folks may not
seem sufficiently concerned I think just reflects that they understand
that this is likely just one more of the many consequences of having had
two courses of therapy to the head and neck. That you're out this far
after having recurrent cancer is really quite amazing already, so
perhaps that is their perspective. They see all the folks that recur
quickly and then quickly go on to develop more of recurrent and
metastatic disease. So with that as their more common paradigm,
perhaps the issue with the voice is less concerning to your docs, though
clearly for your day to day quality-of-life this is a huge issue.
>
> So the bottom line is I think it is great to get another set of eyes by
going to Vanderbilt. They have great physicians and you have family to

be with there in Nashville, making this a sort of win-win situation. It's

probably best not to have high expectations of new insights. But
perhaps they have some ideas that will be helpful. Of course they can
also be another set of eyes to ensure that there is nothing to be
suspicious of (though all sounds very encouraging in that regard). If
you like them and find them supportive and attentive, it may very well be
that it works better to have them take over your ongoing follow-up. But
then again, it is always helpful to continue to have the insights of the
folks who actually performed the treatments.
>
> I do hope this is helpful (though perhaps not!)
>
> Much love,
>
> Karen S.