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Old 04-23-2012, 08:15 AM   #1936
mrsklamc
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My cancer was in my lymph nodes and it took 5 hours. The surgeon said she dug from my jawbone down to my collarbone trying to get as many out as she could, and I could feel it the day after. They were swollen to the size of quarters when they should have been about the size of peas.

Anyway Pembo, in terms of what she will need; My MIL bought me a nice new pair of sweatpants and a zip up sweatshirt, and that did nicely. Anything would have worked that didn't have to be pulled over my head but it was nice to have something new.

My surgeon recommended a bottle of vitamin e capsules, break one a couple of times a day and massage the scar once it is healed...I've read that it's the massage that breaks down the tissue and minimizes the scar more than the oil itself.

I didn't really have any trouble eating whatever I wanted, that I remember.

What are her instructions post op? I had to go hypothyroid (no thyrogen for my radioactive idodine treatment) and that was far worse than the surgery - being hypo and the radioactive iodine diet were horrible. Do you know when she is doing all that?

Another thing that really helped post surgery- My MIL is a nurse and the made sure I got up and walked - just the hallway in our house; to get the anesthesia out of my lungs. I came home and slept for a few hours, then she washed my hair. After that she said, "Now you're going to rest for awhile and then your husband's going to give you a bath." And she started weaning me off my pain meds.

Left to our own devices, I had two weeks of pain meds, and my DH would have let me lay on the couch popping pills for two weeks. I really think that made a huge difference in my recovery.
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Old 04-23-2012, 11:38 AM   #1937
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Haimia - Just wanted to say Welcome too. I am clueless as far as numbers go and sometimes my endo does not even tell me the numbers. I always ask Christine.
Thanks for the welcome. This is all new to me and Christine's notes are great! My mom had issues and thyroid removed, but I was only 12 and it was not a subject that was discussed. She lived over 30 more years after surgery. I think (but don't know for sure) that her thyroid was pre-cancerous. How I wish, now, that it was discussed!
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Old 04-25-2012, 03:53 PM   #1938
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Well today I called the emdo to reschedule my visit. It was for the end of July. Got a letter in Feb. that they cancelled it.

Of course I got an earful about what took me so long to call back. I told them I go through this all the time when they cancel on me (the other time it was like 3 times). I told them the endo said just talk to her and double book me. She says, oh..ok..October.

I said..no way, I have cancer and I am every 6 months and I am doing sono and blood work too etc. So they said they will call me back. Um, yeah alright.

I was just looking at our hosp. cancer stats. 2010 is the latest I could find. They have 177 new thyroid cancer pts. 43 are male. Does that seem like a little high male wise, just that they were commenting that there could be an increase if there were 911 responders from here etc. (article once in the paper)

I just think that they might have to get another endo to join the practice just to keep up with the patients etc. The last staff they added was my endo and that was like 3 years ago.

And thats my thyroid news for the day.

Oh and I am going to Disney 3 weeks from today. I need a vacation for sure.
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Old 04-28-2012, 12:56 PM   #1939
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Pembo - have you had any updates on your niece. Hope all went well for her.
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Old 04-29-2012, 07:58 PM   #1940
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I am hypothyroid. I am looking for a new endo as my current dr. only tests tsh and t3/4. I am currently on Synthroid and still having lots of symptoms. What tests should I have done and what questions should I ask when looking for a new endo?
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Old 04-30-2012, 07:48 AM   #1941
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I am hypothyroid. I am looking for a new endo as my current dr. only tests tsh and t3/4. I am currently on Synthroid and still having lots of symptoms. What tests should I have done and what questions should I ask when looking for a new endo?
What is it that you are wanting tested? I firmly believe I see the best endo in Indiana and she typically only tests my TSH.
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Old 04-30-2012, 10:13 AM   #1942
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What is it that you are wanting tested? I firmly believe I see the best endo in Indiana and she typically only tests my TSH.
I am not sure what I need tested. I have been reading about TSH not being the only test to go by and that you need Free T3/T4 and other thyroid type measures. Where are you in Indiana and who is your endo as I am in Southern Indiana. I am on Synthroid and still have hypo symptoms and am wondering if I need T3 too.
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Old 05-01-2012, 06:08 PM   #1943
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Hi again. My niece had her surgery last Friday. They took the whole thyroid and 40 lymph nodes. She is still in the hospital as she has a chyle leak. Any experience with that here?

My sister in law said she looks good, is in very little pain and is eating well. The drains are bugging her and she is very impatient with having to stay in the hospital. We are going to visit on Friday. Today the surgeon said she'll probably be in the hospital until the weekend. (that's a week). She was also told she is to be off work for 3 weeks.

Thanks for all the knowledge shared on this thread.
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Old 05-01-2012, 07:16 PM   #1944
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Pembo - glad your niece made it through the surgery.

Looked that up but I have heard of it. (the leak)

I was in the hosp. too for a week post op. Mine was 3 surgeries and the coma so it took a while to recover for sure.

I had 2 drains too. One they pulled in the hospital with no lidocaine. Ouch and then some!

The other drain I had in for about 3 weeks because the dr. who saved my life had to rip my neck open in a few minutes etc. A real mess.

My advice: Ask the surgeon to use lidocaine injection before they pull the drain. It really hurts alot less. And I have a big drain scar now on the one that stayed in a long time. Oh well. I am older and I could care less, but its visible for sure. A nice roundish mark.

40 lymph nodes is alot but that is a good quadrant of them. I had around that many too.

I know one guy on thyca boards refers to it as scorch the earth aka get rid of everything that you have to etc.

Wishing your niece all the best. Keep us updated when you can.
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Old 05-02-2012, 12:25 PM   #1945
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"I got my ultrasound and bloodwork reports from hospital. Bloodwork is all normal except for T3 free was 1.88 (normal is 2.2 - 4.0). So, I am slightly hypo?

Ultrasound showed multi-nodular right lobe, left lobe has nodule 2.5 cm with soft tissue and fluid with internal color flow and isthmus has nodule 1.7 cm with soft tissue and fluid. Not great from what I have seen on internet but also not definite of anything. I do not like waiting for another three weeks!

Endo was slightly hesitant to consider needle biopsy as I am on blood thinners; however, other doctor said they can help with the meds to make biopsy happen. I have my DD#2 wedding in early June and have a trip to Germany planned in July. What are my chances!!! Just looking for some ideas and guidance!

T4 was 0.99 (normal 0.89 - 1.76); TSH was 3.151 (normal 0.400 - 4.200); thyroid peroxidase 0.3 (normal 0.0 - 9.0)

As far as the nodules go, the right contained nodules (subcentimeter) and the left contained only one as well as the isthmus contained only one or at least that is what report mentioned. Perhaps more subcentimeter nodules but not listed." from Haimia earlier in this thread!

Okay, so I saw the endo yesterday. As he is looking at the bloodwork, in particular the FT4, he comments "hmmm, that's interesting" - SO what the heck does that mean? He is rerunning TSH and FT4 to double check the results!!

I also have a FNA scheduled for the 10th with endo follow up on the 16th. He wanted to do follow-up in six weeks, but I said "that long" then suggested 4 weeks and I said "that long" so we got it at just two weeks. Won that one!
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Old 05-02-2012, 12:32 PM   #1946
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I am not sure what I need tested. I have been reading about TSH not being the only test to go by and that you need Free T3/T4 and other thyroid type measures. Where are you in Indiana and who is your endo as I am in Southern Indiana. I am on Synthroid and still have hypo symptoms and am wondering if I need T3 too.
I was hoping Christine would weigh in on what 'other thyroid type measures' would be. Keep in mind that because there are SO many things your thyroid does, there are many thyroid symptoms that can be caused by other things as well. But you definitely need a good endo ASAP. I see Dr.Dawn Ayers in Noblesville, but the last I knew she was not accepting new patients.
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Old 05-02-2012, 01:00 PM   #1947
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My advice: Ask the surgeon to use lidocaine injection before they pull the drain. It really hurts alot less. And I have a big drain scar now on the one that stayed in a long time. Oh well. I am older and I could care less, but its visible for sure. A nice roundish mark.
I had two drains as well and when they pulled my drains before I was released from the hospital there was no pain at all. It just felt... weird (for lack of a better word).

I totally agree with your comment about the scars. My drain scars are nearly non-existant now (11 years post-surgery). However, my surgery scar hypertrophied meaning it got thick and raised. It wasn't as bad as some of the pics you see of Keloid scar but bad enough that I was VERY self-concious of it. I tried everything to get it to go away (vitamin ointments, scar patches, even a consult with a plastic surgeon). For many years (probably 5 or more) I only wore shirts that had a very high necklines. Every time I looked in the mirror that was all I saw glaring back at me. I guess over time I just started to forget about it or got used to it or maybe it was that when I did wear a lower neckline no one seemed to notice it. That probably gave me confidence to just let it out more and more.

Now I kind of see it as a badge of honor. It was something I went through and survived. I have a 13yo daughter, who was 1 1/2 at the time, that I get to see blossom into an amazing woman and if all I have to do is deal with a scar and take some medicine everyday than so be it. Bring it on!!!

BTW, all those year I was wearing high collars shirts I was hiding one of my best assets... AMAZING CLEVAGE!!!!
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Old 05-06-2012, 10:21 PM   #1948
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Suzanne - I when you said the badge of honor comment. My dh calls it the badge of courage.

My dh just about passed out when they pulled the 2nd drain. He didnt see the first. I dont know why it affected him so much. He he is so used to this stuff He did 300 bandages for my other surgeries, sat and held my hand when I was in the coma for 2 days, watched some dr. oking needles in my eyes last year etc. I guess the drain just creeped him out.

I am going to the oncologist on Thurs. Going to tell her how tired I feel. I am sure she could care less. She is pretty unemotional and detached from all the patients. I am glad I dont have to see her alot. I am sure she will just say, well tell the endo. And of course I cant even get that office to call me back to reschedule my appt. So I will call them again this week, sigh.

Oh well I will be in Disney in 11 days I think we have 9 adrs, and we are gonna be spending time at the Flower and Garden show and of course star wars week end and I am definetly going to be spending some serious time in Storm Along Bay at the Beach Club. I so need a vacation.
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Old 05-07-2012, 06:32 AM   #1949
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luv-Have a great trip.

My niece is still in the hospital, it's been 10 days. There was talk of another surgery to try a chyle leak repair however they decided to wait the weekend and it appears the waiting was a good thing. Her leak has slowed way down and there was talk of her going home on Tuesday. They pulled one drain on Thursday but the other was still running. Her calcium levels are good.

Thank you all for your advice and I wish you best of luck on your journeys.
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Old 05-07-2012, 11:15 AM   #1950
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So, I went for a follow up ultrasound a few days ago on the nodules and goiter found on my left side last year.

Another one was found on the right 2.3cm subrasternal. An FNA was done. My pathology results say thyroid follicular cells; colloid material; low risk for follicular neoplasm.

Seeing my Endo late this afternoon and i am freaked out.

If you had a substernal goiter with follicular cells present would you push for surgery?
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