Going crazy

ksj
ksj Member Posts: 4
edited March 2014 in Thyroid Cancer #1
Hi, new here. Just found out on 8/6 that I have Papillary thyroid cancer. Several nodules were found 3 1/2 years ago, but the biopsies were inconclusive. I was given I referral to endocronology, but gave up after 3 attempts to get an appointment (2 where the person who schedules was at lunch, and once on vacation. I left a message that was never returned).

Now I get a physical and the doctor tells me it looks like it's grown and sends me off for another biopsy, but just on the one nodule. It came back positive and they told me 8/6.

Well, I quickly recieved a bunch of phone calls scheduling me for a surgical consult, and endocrinology appt, and another ultrasound to check if the lymph nodes were abnormal, and if they are, get a biopsy. They'll biopsy the rest of the nodules post surgery.

Scheduling that ultrasound/biopsy is turning into a nightmare. First she calls and tells me the endocrinologist wants me to get the biopsy right away, but the person that does them is on vacation this week, so the earliest is 8/31. I said OK and scheduled my other appts around that.

They they call this morning and say "oops", he's still on vacation until 9/1. Earliest we can get you in is 9/4. So I say OK, please get my other appointments rescheduled then. She calls back and of course the surgeon is going on vacation starting 9/5 and won't be back for two weeks. He's the guy that specializes in thyroid surgery.

I still don't know how bad the cancer is and if it's spread at all, I won't be having surgery until sometime after 9/15 at the earliest.

I'm going crazy over all this and I don't have any idea what to do about it. It's just adding to what was already a pretty stressful event. The endocrinologist wanted a ultrasound and biopsy of the lymph nodes stat, yet it will be almost 4 weeks before that happens.

Anyway, just blowing off steam...

Comments

  • emma54
    emma54 Member Posts: 59
    #2
    Be Your Own Patient
    Be Your Own Patient Advocate.

    So sorry you are going through this. Can you call other endocronologist and surgeons and ask questions?
  • JAWsSavannah
    JAWsSavannah Member Posts: 57
    #3
    It's unfortunate and
    It's unfortunate and obviously frustrating to have these things delayed but you needn't be too worried about it. Thyroid cancers--papillary and follicular--are very slow growing. Your doctors know this and don't feel like they are endangering you with the delays.

    If you have confidence in your doctors just wait it out. If you don't, do some doctor shopping.
  • jcvolt
    jcvolt Member Posts: 69
    #4
    It is a fairly slow growing cancer although I am not sure why they need another biopsy if they already know you have cancer. Find an experienced surgeon who will take the time to talk to you and make sure he answers all your questions. My biggest concern was vocal paralysis and the surgeon said he would leave a little tissue behind rather than risk damaging the vocal nerves and he did.

    It seems maybe you should try an oncologist or a different endo?
  • ksj
    ksj Member Posts: 4
    #5
    Thanks all. I think I've
    Thanks all. I think I've calmed down, and I got an endocrinology appt for tomorrow morning, so while I won't know all, I hope I get something out of it.

    BTW, it's not the doctors at this point. It's the scheduling person in Radiology. This person is very nice, and I'm sure these were just innocent mistakes, but so far it's been mistake after mistake. These mistakes are causing all my the other appointments to be rescheduled, both with the doctors, and also with my work (again).

    My health concern is that I fail most of the criteria that you read about wrt the best prognosis. I'm over 40, and the nodule is over 1.5 inches. I'm not too worried that I'm going to die soon from this, but I'd kinda like to know the extent of the treatment so I know what the impacts will be to life, work, etc.

    I don't know enough about the growth of these cancers or the nodule growth that prompted my personal physician to ask for another biopsy, but I hadn't seen him in over a year and he immediately noticed the growth (probably >30% greater in size than it was 3.5 years ago).

    From what I've been told, they want to look at the lymph nodes to determine if it's spread to them so they can plan accordingly. The crazy part is the scheduling clerk wouldn't prioritize my ultrasound+biopsy because I didn't have surgery scheduled, but they don't want to schedule the surgery until they know what they need to do. Now everyone is off on vacation or going on vacation, and neither I nor they know what the extent is.

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