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Update: PET/CT Scan Finally

diane2h81's picture
diane2h81
Posts: 41
Joined: May 2010

I finally had a PET/CT scan two weeks ago. I've only asked for one since I was diagnosed a little over a year ago.

Since my CT and i131 scan came back showing nothing, and my TG count never went down, my Dr finally ordered a PET/CT scan.

I received the results last week and we have finally found the culprit. It wasn’t a matter if I had cancer but where it was located. Dr said it is in a handful of lymph nodes and a 2cm area near my windpipe (the windpipe area makes me a little nervous).

Dr discussed my results with the other Dr’s in the office and they decided that the i131 would not work since it didn’t take up any during the last scan, and they are on the fence if I should have another surgery. Soooooo…. they are sending me to MD Anderson in Houston.
Hopefully the surgeon there is more detailed and gets everything unlike the first who did only the minimal (if you can even call it the minimal).

But the really good news is that it has not traveled outside of the neck area!
And I finally feel some kind of relief. I’m not relieved that I have cancer but relieved that we finally know where it is. Now I can take a step forward in my game plan of beating this nasty little sucker.

Has anyone on here ventured to MD Anderson? Or had this cancer near their windpipe?

alapah's picture
alapah
Posts: 257
Joined: Oct 2009

I have been to MD Anderson only once - for a consult last October. I met with Dr. Steven Sherman who is quite well known in the thyroid cancer world. My main docs are at Mayo Clinic, however. My understanding is that I-131 doesn't work well for thyca in lymph nodes period. thus, surgery is typically required in such cases. Mayo does do alcohol ablation for some thyca in lymph nodes. that procedure does not involve surgery. I am sure there are limitations as to when that protocol can be used but it has been effective for many.

my original thyroid cancer nodule was unencapsulated and had adhered to my trachea so i guess that is as close as it gets. i ended up having external beam radiation due to the adherence issue. for someone in your situation, i can't imagine that would be in the game plan.
best to you Diane.
eileen

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Diane,

I too travel to Houston for treatment. When will you be going. Do you have to travel far.
Anderson is a big place, but easy to navigate. If I can answer any questions, just ask.
Best to you...

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Hi Diane,

I haven't been to MD Anderson, but I think I can answer yes to the second question.

I was diagnosed following a lymph node biopsy. The ENT surgeon who did the biopsy then recommended that when he removed my thyroid, he also do a modified radical neck disection and remove nearly all of the lymph nodes on the same side as the biopsy was done. As he was describing what he recommended, I was thinking "Wow!!!", but after very little thought, I agreed, why take the chance that small amounts of cancer have made their way through nodes that wouldn't show as effected. So when my total thyroidectomy was done, 54 lymph nodes were removed from my neck, mostly on the same side as the biopsy {the right}.

This isn't quite as involved as you might think. He didn't remove them individually. There were 8 specimens that were removed from me and sent to pathology, seven of the specimens contained lymph nodes. The lymph nodes in your neck are differentiated by level and there are six levels.(*note at bottom) The nodes that were removed from me were right side levels II [9 nodes], III[5 nodes], IV[19 nodes], V[15 nodees], VI[2 nodes] and left side level VI[3 nodes]. There was also a single node attached to the right lobe of my thyroid. The only node to show metastic involvement {other than the one originally biopsied} was the node attached to my thyroid. You may say that my surgeon went overboard in removing 54 nodes, but the original biopsied node was at the level of my larynx. Looking at a node map of the neck, it seems apparent to me that the cancer cells had to go through at least some of the nodes that didn't show any metastic involvement. Which makes me think that if the amount of metastic cancer cells is small enough, they can go unnoticed even when the lymph node is removed, frozen, sliced and viewed under a microscope.

The only down side I can come up with for aggresively removing as many nodes as seem possible of harboring metastic cancer cells is the loss of indication provided by lymph nodes in general. Specifically in my case, if the original lymph node hadn't become swollen, I would still be unaware there were any problems. Now if there is a recurrence, I will have to rely on blood work and sonograms to catch it. I'll have no back up indicator of a swollen node to tell me there could be a problem {I guess there's still a possibility a more distant node could catch it.}

Reading my discription of a modified radical neck dissection probably makes you think of a very painful and debilitating operation. But, for me, it wasn't. The biggest difficulty was swelling and some, hopefully and almost certainly temporary, nerve damage. There was very little pain, but some achiness. I took no pain killers immeadiately post surgery. I did take some for a few days {days 2-4 if I remember correctly} to deal with the very sore throat from being entubated for five hours. I'm currently almost 3 months post surgery and I'm now experiencing some very transient {a little jab that lasts maybe a second} pain along my incision and some achiness along the two main muscles in the front of my neck. I just today had a post-op visit with the surgeon and he's happy with my RAI scan results and my progress healing. All of my symptoms are to be expectd and as in the case of any major surgery, will take time, likely a year, before they completely dissappear.

To answer the question I'm sure you're wondering about, I'm 51. So I'm not benefiting from the resilience of youth.

===

To sum up, I would be as aggresive as possible in removing lymph nodes. I didn't find this web site until after my surgery, and now that I've read the accounts of those of you who have had to deal with multiple surgeries to remove lymph nodes, I'm doubly glad my surgeon recommended the aggresive approach instead of the minimal approach.

Alan

*(note at bottom) The nodes run in lines and one of the lines runs along your windpipe. I think this occurs on more than one level. The original node that was biopsied was close to my wind pipe.

amorriso
Posts: 186
Joined: Oct 2010

Hi there:

I've been on a similar path with treatment. I had my thyroidectomy out in september 2010, but the surgeon at the time didnt take any lymph nodes. By january I knew something wasnt right. Another surgeon sent me for a PET scan, and based on that I underwent a modified bilateral neck dissection in March. Nothing has spread from my neck area though - quite a relief to know that.
He studied the scan for over a week before the surgery - several nodes were very close to my jugular vein - not a pleasent thought. But he was excellent, and took over 50 nodes successfully. He did not have to take the jugular. Phew. Of those 7 were positive - all on the right side. I'll be doing another RAI on monday.

I still have no feeling in most of my neck, parts of my jaw and earlobes, but my recovery from this surgery was far faster and better than my first. I did some physio to help with rocovery of movement in one shoulder. ONce the incision healed I even started swimming - it felt great.

The neck dissection is a bit scary to think about it, but I'm really glad its done and those lymph nodes are gone. I just cant wait to be done the RAI and really get back to normal.

Hope all goes well with you.

Andree

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Hi Andree,

My earlobe is also affected and that surprised me. Most of my neck that was the flap, is swollen and while I do have feeling there it's diminished. My right shoulder, right earlobe and sometimes down my right arm are all more sensitive instead of less. This has been getting progressively better since the surgery. The first couple of weeks, it felt like someone was tugging on my ear every so often.

I should've mentioned in my first post. I did temporarily lose some range of motion of my neck, I couldn't lift my head all the way up and I was somewhat limited side to side. I also experienced some sagging of my right shoulder {when I looked in a mirror standing straight, my right shoulder was lower than my left one.} The PT exorcises they gave me the day after the surgery took care of my shoulder in about three weeks and my neck in about eight weeks {I think it was more of a case of waiting for the swelling to go down some for my neck since I stopped the PT after my shoulder was back up.} I have no loss of range now and do anything I want physically.

Hang in there Andree, my surgeon said nerve damage can take a while to go away. We both have to wait and let our bodies heal. We can't expect too much too soon.

Alan

sunnyaz
Posts: 582
Joined: Oct 2010

I had the same thing! Mine was also on the right side. My right neck dissection was in June of 2010 and I am slowly regaining some of the feeling. I can now feel my right ear and parts of my neck. Although sometimes I think maybe I am just getting used to the feeling of having no feeling. What really bothered me was the "pins and needles" feeling that I would get in my chest and shoulder area. That has mostly subsided. What is really weird is when I scratch my lower jaw area I can feel it it my neck as if I was "rewired." For several months I couldn't even use my cell phone on my right ear because it just felt wrong. Now I am accustomed to using my left ear for all calls even though I have regained feeling in my right ear. I believe a large part of my recovery was from regular massage to the area. It stimulates blood flow and that promotes the healing process. I also did a lot of swimming last summer after the incision healed. It felt great!
Blessings,
Julie-SunnyAZ

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Julie,

June of 2010, from what I've been hearing, you should be getting close to back to normal. But haven't you had more than one surgery? That might make a difference.

A friend who had a TT but no neck dissection told me when she pressed a spot on her chin, she could feel it shoot a quater of the way down her chest. Her's went away after a while, she's not sure how long it took since she's about ten years post surgery.

I'm amazed at the number of people I know who have had some sort of thyroid trouble. Hashimotos, cancer, Graves & one guy who's thyroid just completely shut down for no apparent reason.

Alan

sunnyaz
Posts: 582
Joined: Oct 2010

Yes, June 2010 was my second surgery. I have had three. TT in November of 2009, June 2010 was my right neck dissection and December 2010 was my right neck dissection do-over with my new doctor. The ENT (first and second surgeries) botched the second surgery and missed the intended nodes. While he got thirteen cancerous nodes out of thirty-four that he removed, he forgot to remove the nodes that were aspirated and biopsied the month before. The second surgery did the most damage to my nerves because it went from the left side of my neck to the base of my right ear. I am still massaging the incision from the December surgery. It is slowly beginning to lighten in color. It was really red and swollen for a while because it was the third time it had been opened. After the second surgery I had some loose skin on the right side of that incision and the new surgeon was kind enough to remove some of the skin so that it now looks more even.

It is amazing how so many people are turning up with thyroid problems! I am convinced it is environmental. Working in the medical field has opened my eyes. You would be amazed at how many of our patients that come in for weight control have underlying thyroid issues. The common complaint is, "I work out, I barely eat anything and I still keep gaining weight." First we do labs to test their TSH including T4's. If they are hypo we start them on Synthroid, start them on appetite suppressants, counsel them on diet and exercise to try to get them back to health. I have one patient that is 5'2" and started our weight program at 245 pounds. She recently weighed in at 120 pounds, almost to her goal. She was hypothyroid her entire life! We keep checking her neck for nodes and so far, so good. I send about one third of them for a neck sono when they come in because I can feel a node or two on their first visit. About twenty percent of them are then going for FNA's and finding out they have cancer. Makes me wonder what the heck is happening! Again, it must be environmental.

Blessings,
Julie-SunnyAZ

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Hi Julie,

Yup, that explains it. Your not that far ahead of me, early Feb 2011. Looks like we all have a little bit of a way to go yet.

I just had my second post-op visit with the surgeon. He's happy with the RAI scans and associated blood work. I'll see him and my endo again in early August.

Also had my second endoscopy, I wish he'd wait a little while for the spray anesthesia to start working. The first time he did and I barely felt it, this time he did it right away and I really felt it. I said something to him, maybe he'll be more considerate next time.

I agree, and the environment just got a great big dose of Iodine-131 from Japan. That ought to increase the thyroid cancer incidence rate some.

Alan

amorriso
Posts: 186
Joined: Oct 2010

Yep - everything you mentioned sounds very familiar - except its my left shoulder that is a bit of a problem. Physio really has helped though. Both my earlobes are numb - I'm getting used to the lack of feeling. I havent been able to wear earrings - it feels too strange.

On the plus side - I have been able to get out again on my Harley - just a gentle ride but boy it was good to be back to a form of normal.

Had my first thyrogen shot today - so far so good. Another tomorrow, then RAI on Monday. Yeehaaa.

Cheeers

Andree

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