neck dissection info

[onemoretime]

Just got my diagnosis of papillary cancer a week ago.  According to ultrasound, the left lobe is involved, and the cancer is in adjacent lymph nodes, so the surgeon has told me I will not have the "traditional" total thyroidectomy, but a neck dissection instead.  I have a ct scan with contrast dye tomorrow to check my right side and lungs for further metastases.  I would welcome anything you can share - good or bad - about your experiences with neck dissections (recovery time, challenges, issues, neck numbness, etc.)  I have surgery scheduled for January 11, and want to know what I'm in for as much as possible.

It's been a tough year or so.  18 months ago, I was diagnosed with an immune disease; as a result, I'll be doing subcutaneous injections of immunoglobulin for the rest of my life (5 needles in the abdomen for two hours, once a week).  Then I had a miscarriage two months ago.  I was given the green light to try and conceive again a week before my doctor found the lump on my thyroid.  So I wonder how long it will be before I have the strength to try again and what that period of time will be.  We’re crushed about the delay, if indeed it will be just a delay, depending on the ct results regarding my lungs.  I have a 4 year old, so I'm dreading the fatigue I'll have as a result of what you all call "hypo hell" preceding RAI and the isolation from her following it, as well as the down time following surgery.  (My surgeon said two weeks off work.)

Thanks for letting me vent a little.

[onemoretime]

Just checking in and letting you know I had my CT this morning.  Took prednisone and benadryl starting last night.  First appointment of the day in radiology, so in at 7:30, out before 8:00.  (My ultrasound and FNA took 2 1/2 hours, almost 2 of that waiting.)  It pays to snag that first appointment.

No problems this morning; a contrast CT years ago (1983) was a disaster, so I was pretty keyed up.  Went to bed last night at 12:30, wide awake at 4:00.  (Waiting for that new antidepressant to kick in!)  

I asked the technicians about the contrast dye.  They made some calls to Nuclear Medicine and Oncology and were told that with the dye they were using, I would be ok for RAI 6-8 weeks post-CT. As for checking with my Endo, there are 2 practices in my HMO group, and neither is able to see me until next week - and my surgery is scheduled for the 11th.  So much for coordinating care!

Just waiting now to see if this stuff has spread, and to get the ball rolling with surgery.

My wonderful GP, who checks every thryoid that comes through his door at every appointment and found my nodules, reminded me that though I'm starting the new year with a cancer diagnosis, surgery and all that it entails, it will also be the year that my cancer is cured. I'm far from the place where I believe what he says and see it positively, but I'm working toward it.  Thank you all for taking the time to talk to me.  May we all be blessed with better health in 2008.

[utahmomma]

You will do great!!  We are all here for you.  As the song goes . . . "the waiting is the hardest part"  That's what you have us for!

[Jalder]

Your surgeon is concerned with the operation not continuing care that's why he didn't mention CT contrast dye delaying RAI.   Make sure you ask about the iodine content please - talk to your Endo and insist on knowing.  The TT and neck dissection is OK and the RAI is a piece of cake so try not to worry too much.
Jennifer

[onemoretime]

Thanks all, for the information.  I was supposed to have my CT with contrast on Friday, but the tech thinks I might be allergic to the dye based on a past scan years ago.  So it's postponed until this Monday, early am so I can pre-medicate before.  My surgeon ordered the CT and made no mention of the dye possibly delaying my RAI.  That's the part I'm dreading the most - the surgery, not so much - and I want to get it over with as soon as possible.  Waiting as long as six months...  I'm a nervous wreck now.  

[utahmomma]

Wow - how sweet.  Thank you.  Actually my family isn't an inspiration- as my youngest sister said: we just slithered out of the shallow end of the gene pool.  :-)

I'm glad your surgery went so well.  It is actually an easy surgery (as surgeries go).  Your plan for RAI sounds perfect . . . can you get someone to bring you room service?  I'm so glad that your mom will be helping.  It's crazy - you feel perfectly well after RAI and have to keep reminding yourself that you are radioactive.  Get lots of cleaning doe - that's what I did (and caught up on lots of on-line work).

[whittie918]

I'm telling you utahmomma, your whole family is an inspiration to us all.  Your youngest sisters experience is everyones worst nightmare come true.  Yet, here she is after only 3 RAI treatments and clean and with a healthy baby.  

Personally, I adjusted very well after surgery.  I could have had the surgery on a Thursday and went back to work on Monday.  I felt really good but that may be due to the fact that they put me on Cytomel (my doctor called it a mini pill) for a bit while healing.  

I'm currently on my  2nd week without meds and have one week to go until RAI and I'm finally starting to feel the affects.  I'm tired, even as I type, I'm cold and I'm moody and not very motivated or productive.  All in all, I think I have it pretty good considering.  I have a 2 1/5 and 5 year old so I know your concerns about afterward.  My mom is on her way to help and I just plan to hide in my master suite for a week.  Goodness knows it needs cleaning and organizing anyway.  

[utahmomma]

Oh, I can't believe I overlooked that.  Great point!!!

[Jalder]

Ask about the iodine content of the CT contrast dye.  I had to wait 6 months after TT and neck dissection for my RAI becuse I had a CT scan using contrast pre-op.
Jennifer

[utahmomma]

I'm so sorry.  I can just give you my personal experience.  There are six of us in my family with thyroid surgeries - four for cancer, two were precancerous.  My youngest sister had metastases in her lymph nodes and in her chest (stage II).  All of us were in and out of the hospital in 24-hours.

The youngest sister had to go through RAI three times (the first scan showed significant uptake everywhere - especially in her lymph system, lungs and breast).  I've gone through RAI once for recurrence.

Hypohell is horrible but, since you already know that you will be facing it, you probably won't have to go on thyroid meds then go back off them - which ought to make it easier and faster.  Also some hospitals use thyrogen shots (though some won't use them for treatment doses).

If it helps, I was back at work (both times) the next week and my sister conceived the most beautiful, healthy little girl six months after her last RAI.  Take care of yourself first though - your husband and 4-year old need mommy around for a very, very long time.