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No lymph nodes taken during TT

lglegl70
Posts: 20
Joined: Oct 2010

I find it weird that I don't know if my cancer was contained to the thyroid or not because no lymph nodes were taked during surgery. There was one thing that was labeled as a lymph node, but turns out it was an extra-thyroidal extension (or something like that) and no lymph node tissue was detected. I had 5 tumors in my thyroid (including the extra extension thing) and they were all cancerous. My margins were clear, however one area was very close. It would be nice to know if I had lymph involvement or not. I worry that it's still in there. I just had RAI this past week and will have a body scan this coming thursday.

Has anyone else not had lymph nodes checked?

nasher
Posts: 507
Joined: Apr 2010

they caught mine early and didnt take any lymph nodes.. they did take 2 parathyroids cause they were inside my thryroid itself but nothing do to the cancer

nasher
Posts: 507
Joined: Apr 2010

they caught mine early and didnt take any lymph nodes.. they did take 2 parathyroids cause they were inside my thryroid itself but nothing do to the cancer

lynn2318
Posts: 41
Joined: Jan 2010

How did your tests turn out? I had papillary with lymph node involvement. My surgeon said
"when I removed your thyroid 2 lymph nodes were attached, I didn't mean to remove them they just came out and they are malignant too." I had to have 2 RAI treatments 6 months apart. Due to my age, size of nodule, and lymph node involvement my cancer was stage IV. Hope all is good for you. Please post how you are doing?

lglegl70
Posts: 20
Joined: Oct 2010

My WBS came back clear, with the exception of "residual thyroid tissue" which was expected. I just get worried about every little thing wondering if it's cancer again. I'm 2 weeks out from RAI, and still have some glands under my chin that are sometimes painful. I also have pain in the back of my head - where the head meets the neck. This started about two weeks after my TT, and it hasn't gotten any better. I mentioned it to my radiation oncologist before RAI, and he felt around and didn't seem concerned. At that point, it was just a little pain/stiffness. It has gotten to the point where it wakes me up at night...actually I wake myself up moaning from the pain when I move. It is tender to the touch. And I can't turn my head to look to either side very well now. It's really scaring me. I see my med oncologist tomorrow, and I'm going to mention it to him. It's just getting worse. I read on the internet (which I swore I wouldn't do anymore) that there are lymph nodes back there. It just makes me wonder why the pain and why it's getting worse. And then I get angry that they didn't check any lymph nodes.

My tumors were a bit large but not overly large, and I've tested positive for the B-RAF mutation thing, so that put me in a higher category for a worse cancer apparently. I haven't been told what stage I'm at, but I plan to ask tomorrow. All I've ever heard them say was that my stage was "low". I was under 40 at the time of diagnosis, so I think that was in my favor for the staging.

I hope all is well with you!

Thank you for the responses!

lynn2318
Posts: 41
Joined: Jan 2010

Hi, how was your doctors appointment and did they have any thought on your neck pain? I hope you are doing good and feeling much better. Did they mention what stage you are? Take care and please keep us informed.

lglegl70
Posts: 20
Joined: Oct 2010

My appointment was less than I expected. It was mostly just to make sure I was feeling ok, and to tell me I didn't need to come back to him unless the cancer recurs. He kept saying, "one less doctor to have to worry about".

As for the neck pain, he didn't have too much to say about it. I made him feel to make sure there weren't any swollen lymph nodes causing it. He said he didn't feel anything, but I felt like he was trying to get rid of me, so I'll ask my endo. He kept telling me that she (my endo) could go over my questions better. Whatever. I hope he's not like that with his other cancer patients! He was behind schedule, so maybe that was it. I don't know.

I did ask what stage I was, and he said PT1b. So I guess that's stage I.

I Hope everyone is well.

amorriso
Posts: 186
Joined: Oct 2010

I've had some neck pain like you as well. I go for my RAI treatment next week - I'm definately going to ask about this and have them check everything.

I have to ask what stage I'm at - keep forgetting to do that.

Hope your well.

lglegl70
Posts: 20
Joined: Oct 2010

amorriso - Have you found anything out about your neck pain? And how is RAI going? I believe you got it this week, right? Hope that is going well.

I saw my endo and asked about the neck pain. She didn't feel any enlarged nodes, and told me she thought it was stress related.
I was glad she didn't feel any enlarged nodes, because I found out that my WBS was NOT clear. There was uptake in one of my salivary glands on the right side, as well as another area also on the right. She said the RAI will continue to work for months, and she is hopeful that those two spots will be killed. I didn't think to ask if there was a connection between my neck pain and the spots, but my pain isn't limited to the right side so I'm guessing not. It scares me though because I tested positive for the BRAF mutation, so it's always in the back of my mind that it has spread.

Also, have you found out what stage you are?

Sending positive thoughts your way!

lynn2318
Posts: 41
Joined: Jan 2010

If you want to know more about your stage you can look on thyca.com or american cancer society web site to read about how they stage your cancer and what that means. I found out a lot about my Stage IV papillary cancer by reading myself. The doctors sure went forth coming. Hang in there. Please post what you find out.

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