Re: Upset with my doctor

July 11, 2001

Dear Sonya,

I had a somewhat similar experience with the ENT who did my first surgery.

The plan was to remove half my thyroid if it was benign and all of it if it

were cancer. The frozen section looked benign, so the surgeon only took the

lobe with the cancer. The tissue was sent to the U. of PA because it was a

complicated lobe and difficult to diagnose. It was determined to be

follicular variant of papillary cancer by a pathologist at the U. of PA. The

report was probably back in about a week after my surgery, but evidently, the

(incredibly stupid) office staff just filed the pathology report away in my

chart and never showed it to the doctor. Meanwhile, I had the surgery on an

outpatient basis. I went home about 2 hrs after they finished the surgery.

I began to develop difficulty urinating. It got worse and worse, and I knew

that calling the surgeon was a " lost cause " because he only deals with head

and neck surgery and seemed to know nothing about anything " lower " than that!

:-) I got some relief by getting into the bathtub (five times) during the

night. I went to a PA in his office the next morning to get the drain

removed. This PA laughed at me when I told him I couldn't urinate!!

(Believe me, that was probably the most miserable night of my life. I am a

pharmacist, and I know that it is a serious matter--certainly not a laughable

one). This PA couldn't even tell me how to take care of the incision,

whether I could shower or not, etc., etc. I had to see him rather than the

doctor's regular PA or else I had to drive a long way to another office in

town to get the drain removed. This PA gave me a drug which made the urinary

retention worse. I, being a pharmacist should have know better than to take

it, but I was so upset that I didn't take time to look it up. I took it. So

then I wound up in my gynecologist's office a few hours later being

catheterized and then wearing the catheter overnight! I was SO mad at this

doctor for being unavailable! Anyway, I saw the " right " PA a couple of weeks

later to have the stitches removed. (I still had not see the surgeon at all

since before the surgery). I asked to see the doctor rather than the PA for

the final visit a month later. I was told that he doesn't see patients after

surgery! The PA did tell the receptionist to let me see the doctor. When I

went back to see him five and 1/2 weeks after the surgery, I " read him the

riot act " about the urinary retention (which was, by the way, a side effect

of the anesthesia drugs). When I finished, he said, " You are going to like

this even less. I thought it was benign! " I guess he opened my chart and

saw the pathology report with the cancer diagnosis for the first time when he

was about to come into the exam room to see me!! If I hadn't insisted upon

seeing him, I am not sure I would ever have known it was cancer! So then, he

began to tell me how horrible a second surgery would be. He was anxious to

" wash his hands of me. " He recommended an endo and said that the cancer was

" little bitty " and that he was almost sure the endo would just want to watch

it. I had to practically force him to check my thyroid levels. Then the

clerk or whatever couldn't fill out the requisition for the lab without my

help--and on and on. I didn't know what to do about it all. It took several

months to get a endo who recommended I have the TT. Of COURSE I didn't have

the same doctor--or even hospital--do the second surgery. (It wasn't

horrible, BTW--it was much easier than the first surgery, and the scar is

almost gone). Then I had four doctors (or more) tell me I didn't need the

RAI, but when I finally had it done, there were mets to the lymph nodes in my

neck!

All of that to say that I FULLY empathize with you! Please be sure that you

get the final pathology report--no matter what you have to do to get it! I

think that the surgeon's not taking all of the gland when that was the plan

you had agreed upon is UNCONSCIONABLE!! I had normal TSH, T4, etc with only

half a thyroid, plus you probably have enough circulating thyroid hormone

that will take a while to dissipate, so I'll bet you will be OK until you can

see an endo. The endo is the really important doctor for you right now. If

you should have to have the rest of the gland removed, I'd say to get another

surgeon if you can. Make sure you feel good about the endo. My saga is even

a good bit longer and more involved than this, and I finally traveled to KY

to see Dr. Ain who helps with this list--which was a GREAT decision. I wish

you the very best and sincerely hope that you don't have to go through any

more surgery or treatment.

Dianne

Atlanta

PT 5/99;TT 10/99; 1.2cm fol var pap;RAI 150mCi 7/00; mets to lymph nodes;in

week 3 of six week prep for scan Aug. 6

July 11, 2001

Oh Sonya, reading your letter made my stomach turn. The same thing happened

to me! My thyca was discovered when I had a lymph node removed from my neck.

I was SUPPOSED to have a TT and the surgeon changed the plan after I was

under. When I finally had my first appointment with my endo, she didn't

believe me when I told her I had some thyroid left. After 2 months of TSH

tests and her saying " I don't know why your TSH won't go down, I know he

took it all out " I finally had an ultrasound and she was amazed to see that

he had left almost the entire right side in. In my case when they did the

completion, they found a tiny spot of thyca in the remaining section. I felt

as if I had been talking for 2 months and no one heard me. It was a

nightmare. I did survive though, so try not ot worry too much right now.

My point is is that I know EXACTLY how you feel. I hope that helps a little,

you are not alone! Concentrate on recovery, then when you're stronger you

can do what you need to do.

Peace, Love and all that Hippie Stuff!

Upset with my doctor

> I just need to vent about my surgeon. When I had my appointment with him

we discussed at length my family history and decided that a total

thyroidectomy was the best route. Well, seems that when he did the surgery,

he did the frozen section of my right lobe and since it was benign, he

decided to change the plan and took the right side and only half of the

left. I've had a few days to think about this and I'm really ticked at him

for making this decision without my input.

>

> The whole reason for agreeing on the TT was because of my having 5 family

members with Thyca, one of whom had the same thing I just did and then ended

up with the thyca in the remaining half lobe. We agreed that this was the

best route to prevent me from getting it later since I already had the

changes in the right lobe, but he just did what I guess was protocol for

patients with nodules that have no cancer in the frozen section.

>

> It's like he didn't review our discussion or my records before the surgery

and didn't remember that we had agreed on the TT. It's not like it can be

changed now, though, so I'm more than a little upset at him.

>

> And he never looked at my incision before I went home, spent a total of

maybe 3 minutes popping in and out of my room twice and giving me the cold

shoulder when I asked about the PT.

>

> His office has never made me an appt with the endo, so I tried and they

said I couldn't, that the docs office had to, so I called them and they

finally made the appt and I can't see the endo until August 10th. I'm

hoping that when I see my surgeon on Monday for follow up that he will put

me on something to begin with or that the residual hormone left and the half

a lobe will keep me going until i see the endo. I'm so unclear and confused

as to what I should expect or what the next step is. And I'm really

thinking I should look for another group since I don't have the

thyca....ugh....

>

> Anyway, anyone with any advice or suggestions, I'd love to hear from you.

>

> Sonya

>

July 11, 2001