Best place for treatment of ptc after a total thyroidectomy

MarinMark

I'm in Marin county California just north of San Francisco. Had a "TT" for pap ca which people abbreviate as ptc. I'm ready for rai. Have any of you gotten a second or third opinion before getting rai ? If so, where is the best place or places in California or the USA ?

One doc said that I should consider getting the nodes on both sides of my neck removed before rai. No enlarged nodes can be felt, but there's a suggestion that removing the nodes on the sides might make rai more effective. Not sure I would want yet another surgery with no known benefit. What have you people done ? Have you gotten rai even with some "ptc" in the side nodes ?

sunnyaz

I don't know where to go for
I don't know where to go for a second opinion in California. I DO know that if you have nodes that are already positive for PTC they should be removed before RAI. RAI will not kill them and then you will end up right back to having another surgery and then RAI again. RAI will only kill Thyroid tissue (along with some other cells that takes up iodine) and small cells that have cancer. It will not kill a cancerous node. If the nodes are NOT cancerous then I would do the RAI without any other surgery. I have never heard of removing nodes to make RAI more effective. There are hundreds of nodes, how would they know which ones to remove? There is no way to tell.

I hope this enlightens you a little bit.

Blessings,
Julie-SunnyAZ

MarinMark

sunnyaz said:

I don't know where to go for
I don't know where to go for a second opinion in California. I DO know that if you have nodes that are already positive for PTC they should be removed before RAI. RAI will not kill them and then you will end up right back to having another surgery and then RAI again. RAI will only kill Thyroid tissue (along with some other cells that takes up iodine) and small cells that have cancer. It will not kill a cancerous node. If the nodes are NOT cancerous then I would do the RAI without any other surgery. I have never heard of removing nodes to make RAI more effective. There are hundreds of nodes, how would they know which ones to remove? There is no way to tell.

I hope this enlightens you a little bit.

Blessings,
Julie-SunnyAZ

Hmmmm. That doesn't make
Hmmmm. That doesn't make sense. Then why give more than one round of rai ? Removing nodes which have tumor allows more RAI to go where it hasn't been removed. Less tumor means either less rai or more effective destruction. How can one tell ? Mri and ultrasound.

alapah

MarinMark said:

Hmmmm. That doesn't make
Hmmmm. That doesn't make sense. Then why give more than one round of rai ? Removing nodes which have tumor allows more RAI to go where it hasn't been removed. Less tumor means either less rai or more effective destruction. How can one tell ? Mri and ultrasound.

ultrasound
Ultrasound seems to be commonly used to help identify suspicious lymph nodes. I had one node on a watch for a while because on some ultrasounds it appeared to have blood flow. Wasn't solid (ie calcified) but did look different. The U/S technician and doctor can change settings on the transducer (I think that's the name for the scanner part) so that they can look at different characteristics. Also, the shape of an enlarged node can be somewhat helpful in suggesting if it's of concern - my endo said mine was long whereas often the 'bad nodes' she encounters are sort of plump and round.

A suspicious lymph node can then be biopsied using the FNA method - just as is used to biopsy the thyroid gland itself (this is true as long as the problem nodes aren't in tricky spots like near the jugular or between the jugular and carotid arteries. The one I had on watch happened to be in that position and they chose to monitor rather than biopsy cause they did not want to be sticking a needle in that area). I suppose they can't FNA every node if you have many suspicious ones but a few samples from nodes that are suspect might be enough to indicate the required next step.

A PET scan might help too but that would be pretty extreme in most cases - and it exposes the patient to radiation so the docs have to have a compelling need to order a PET. In contrast, ultrasounds are very low impact and don't expose you to radiation. From that I understand, the neck is one of the trickier areas to ultrasound and interpret so having a seasoned technician and doc are pretty important.

RAI doesn't always penetrate lymph nodes for some reason so they usually want to clear those surgically or by alcohol ablation. Mayo Clinic, and perhaps few other places by now, offer alcohol ablation which involves injecting an alcohol solution directly into the affected lymph nodes.

I have an advanced case of thyca so I've done a bit of searching for second opinions, though not about RAI in particular. The leading centers/docs that I have run across include: MD Anderson in Houston, TX. Mayo Clinic, Rochester, MN. Dr. Brian Haugen, Denver, CO. Memorial Sloan Kettering, NYC. Johns Hopkins. Hospital of the University of Pennsylvania, Phila, PA.

I know that Univ of Southern Calif has a highly regarded endocrinology lab (my blood samples are always sent there and banked) but I am not sure if folks there are working on thyroid cancer.

sunnyaz

MarinMark said:

Hmmmm. That doesn't make
Hmmmm. That doesn't make sense. Then why give more than one round of rai ? Removing nodes which have tumor allows more RAI to go where it hasn't been removed. Less tumor means either less rai or more effective destruction. How can one tell ? Mri and ultrasound.

Maybe my explanation was a bit confusing.
If you have nodes that are known to be cancerous, there is no point in doing RAI yet. They should be removed first because RAI won't get rid of the cancerous nodes. The best way to know if they are cancerous is; like alapah said, an Ultrasound with fine needle aspiration on any nodes that look suspicious. The tissue from the FNA is tested for PTC. If they are cancerous, it is best to have them removed before RAI. If you do RAI with known cancer nodes you will end up having to have them removed anyway and then they will need to do another round of RAI to kill cells that could have grown or spread from the nodes they removed that were microscopic and cant be seen. Does that make sense?

MRI is not typically useful in detecting cancerous nodes. FNA is really the only way to be positive. PET scan would be used only if your blood levels indicated there is still cancer but they are unable to find it using an Ultrasound or other less expensive means because insurance will require it.

I hope that was a better answer to your question.

Blessings,
Julie-SunnAZ

MarinMark

alapah said:

ultrasound
Ultrasound seems to be commonly used to help identify suspicious lymph nodes. I had one node on a watch for a while because on some ultrasounds it appeared to have blood flow. Wasn't solid (ie calcified) but did look different. The U/S technician and doctor can change settings on the transducer (I think that's the name for the scanner part) so that they can look at different characteristics. Also, the shape of an enlarged node can be somewhat helpful in suggesting if it's of concern - my endo said mine was long whereas often the 'bad nodes' she encounters are sort of plump and round.

A suspicious lymph node can then be biopsied using the FNA method - just as is used to biopsy the thyroid gland itself (this is true as long as the problem nodes aren't in tricky spots like near the jugular or between the jugular and carotid arteries. The one I had on watch happened to be in that position and they chose to monitor rather than biopsy cause they did not want to be sticking a needle in that area). I suppose they can't FNA every node if you have many suspicious ones but a few samples from nodes that are suspect might be enough to indicate the required next step.

A PET scan might help too but that would be pretty extreme in most cases - and it exposes the patient to radiation so the docs have to have a compelling need to order a PET. In contrast, ultrasounds are very low impact and don't expose you to radiation. From that I understand, the neck is one of the trickier areas to ultrasound and interpret so having a seasoned technician and doc are pretty important.

RAI doesn't always penetrate lymph nodes for some reason so they usually want to clear those surgically or by alcohol ablation. Mayo Clinic, and perhaps few other places by now, offer alcohol ablation which involves injecting an alcohol solution directly into the affected lymph nodes.

I have an advanced case of thyca so I've done a bit of searching for second opinions, though not about RAI in particular. The leading centers/docs that I have run across include: MD Anderson in Houston, TX. Mayo Clinic, Rochester, MN. Dr. Brian Haugen, Denver, CO. Memorial Sloan Kettering, NYC. Johns Hopkins. Hospital of the University of Pennsylvania, Phila, PA.

I know that Univ of Southern Calif has a highly regarded endocrinology lab (my blood samples are always sent there and banked) but I am not sure if folks there are working on thyroid cancer.

alcohol ablation
So one has to chose between alcohol ablation and having a large scar on each side of their neck ? This is all still to difficult to understand. One can have nodes removed or alcoholed and still have ptc remaining. If rai doesn't destroy ptc in nodes then why are people given repeat treatments ?

If one aspirates a node an area of ptc can be missed so that node won't be removed or treated ?

Does everybody who has one or more nodes involved in their neck get both sides stripped out ?

MarinMark

sunnyaz said:

Maybe my explanation was a bit confusing.
If you have nodes that are known to be cancerous, there is no point in doing RAI yet. They should be removed first because RAI won't get rid of the cancerous nodes. The best way to know if they are cancerous is; like alapah said, an Ultrasound with fine needle aspiration on any nodes that look suspicious. The tissue from the FNA is tested for PTC. If they are cancerous, it is best to have them removed before RAI. If you do RAI with known cancer nodes you will end up having to have them removed anyway and then they will need to do another round of RAI to kill cells that could have grown or spread from the nodes they removed that were microscopic and cant be seen. Does that make sense?

MRI is not typically useful in detecting cancerous nodes. FNA is really the only way to be positive. PET scan would be used only if your blood levels indicated there is still cancer but they are unable to find it using an Ultrasound or other less expensive means because insurance will require it.

I hope that was a better answer to your question.

Blessings,
Julie-SunnAZ

Hi julie--- yes, part of
Hi julie--- yes, part of what you said makes sense. But part is even more confusing. My doc said MRI is the best, and ultrasound and CT are not good. The MRI is done with and without gadtolinium (?spelling).

So no one here has had an MRI ? Has everyone had surgery on each side of their neck ?

alapah

MarinMark said:

Hi julie--- yes, part of
Hi julie--- yes, part of what you said makes sense. But part is even more confusing. My doc said MRI is the best, and ultrasound and CT are not good. The MRI is done with and without gadtolinium (?spelling).

So no one here has had an MRI ? Has everyone had surgery on each side of their neck ?

I had one neck MRI which was
I had one neck MRI which was done not to look for cancer but to get a good view of any residual tissue - this was requested by a radiation oncologist just prior to going through 6 weeks of external beam radiation. So, yes, I have had one but not for the purpose your doc suggests. I have never heard of MRi being used that way, though I am no expert. Also, I had only six or so lymph nodes removed in surgery and none were positive so I can't really comment on the neck dissection experience, though there are others here who have had lymph node involvement.

So, I guess I am somewhat confused after re-reading your original post. Do you have any suspicious lymph nodes or is your doc suggesting lymph node removal surgery as some sort of proactive measure? If the latter is the case, that would seem really radical to me, based on what I have learned in this journey.

My docs have all used CT and U/S to monitor my situation. I have had PET scans too but only because they suspected (and confirmed) metastases in my case. Is your doc an Endocrinologist specializing in thyroid cancer?

MarinMark

alapah said:

I had one neck MRI which was
I had one neck MRI which was done not to look for cancer but to get a good view of any residual tissue - this was requested by a radiation oncologist just prior to going through 6 weeks of external beam radiation. So, yes, I have had one but not for the purpose your doc suggests. I have never heard of MRi being used that way, though I am no expert. Also, I had only six or so lymph nodes removed in surgery and none were positive so I can't really comment on the neck dissection experience, though there are others here who have had lymph node involvement.

So, I guess I am somewhat confused after re-reading your original post. Do you have any suspicious lymph nodes or is your doc suggesting lymph node removal surgery as some sort of proactive measure? If the latter is the case, that would seem really radical to me, based on what I have learned in this journey.

My docs have all used CT and U/S to monitor my situation. I have had PET scans too but only because they suspected (and confirmed) metastases in my case. Is your doc an Endocrinologist specializing in thyroid cancer?

Thank you alapah.
Thank you alapah. I had most of the nodes positive that were below the thyroid because they took those out with my thyroid. I had two different ultrasounds. A big ultrasound machine supposedly found all nodes normal n size and, but another smaller ultrasound showed one or two suspicious. So the mri was recommended. On checking google, it seems mri is used for the neck and nodes. Like here http://health.ucsd.edu/specialties/mri/applications.asp#neck

So has anyone here had an mri to evaluate the lymph nodes on the sides of the neck ? Or did you doc use ultrasound and maybe aspirating ?

sunnyaz

MarinMark said:

Thank you alapah.
Thank you alapah. I had most of the nodes positive that were below the thyroid because they took those out with my thyroid. I had two different ultrasounds. A big ultrasound machine supposedly found all nodes normal n size and, but another smaller ultrasound showed one or two suspicious. So the mri was recommended. On checking google, it seems mri is used for the neck and nodes. Like here http://health.ucsd.edu/specialties/mri/applications.asp#neck

So has anyone here had an mri to evaluate the lymph nodes on the sides of the neck ? Or did you doc use ultrasound and maybe aspirating ?

MRI
They have always used Ultrasound guided Fine Needle Aspiration on me. No one ever recommended an MRI because they said it would not detect the nodes nor could they tell if they were cancerous by that method. I had two neck dissections last year and both used Ultrasound guided Fine Needle Aspiration to confirm diagnosis.
Blessings,
Julie-SunnyAZ

MarinMark

sunnyaz said:

MRI
They have always used Ultrasound guided Fine Needle Aspiration on me. No one ever recommended an MRI because they said it would not detect the nodes nor could they tell if they were cancerous by that method. I had two neck dissections last year and both used Ultrasound guided Fine Needle Aspiration to confirm diagnosis.
Blessings,
Julie-SunnyAZ

Two neck dissections on each
Two neck dissections on each side ? Total of four surgeries ? What was that like ? Was it one long incision, or under local they removed each suspicious node ? So the RAI did not treat those bad nodes ? Did you think about getting alcohol ablation ? Did they remove both bad and good nodes ?

Any long term bad effects to the dissections ?

sunnyaz

MarinMark said:

Two neck dissections on each
Two neck dissections on each side ? Total of four surgeries ? What was that like ? Was it one long incision, or under local they removed each suspicious node ? So the RAI did not treat those bad nodes ? Did you think about getting alcohol ablation ? Did they remove both bad and good nodes ?

Any long term bad effects to the dissections ?

Two neck dissections on the same side
Total of three surgeries. TT in November 2009. First neck dissection; June of 2010 (botched by my ENT). Then a re-do dissection in December 2010 to remove the actual nodes that were originally biopsied and targeted for removal. This was to fix the second dissection the ENT botched. I had RAI after my second surgery (the botch) and again after my third surgery (the fix). In fact they didn't even show up on the scan because they didn't absorb the RAI. They had even grown from June to December when we discovered that they were still there. My oncologist said that Alcohol Ablation wasn't an option for me. It's not affective for B-RAF positive patients. The only way to kill the cancer is remove it and zap microscopic cells with RAI again. Yes, some good nodes were removed on both surgeries. They usually take out anything that looks suspicious when they go in. As long as they are there they remove what they can see.

Only long term effects are numbness (lack of sensation on the side of my neck and part of my jaw where the surgeries were)from about the middle of my neck to my ear. Sort of a pins and needles feeling on my upper chest, collar bone area. I think that was from when he made the incision into my outer jugular vein to put in the drain tube. Ended up almost bleeding to death. I have neck pain (muscular), but I also have other conditions that exacerbate that situation. I.e. Chiari Malformation and Fibromyalgia.

Blessings,
Julie-SunnyAZ

MarinMark

sunnyaz said:

MRI
They have always used Ultrasound guided Fine Needle Aspiration on me. No one ever recommended an MRI because they said it would not detect the nodes nor could they tell if they were cancerous by that method. I had two neck dissections last year and both used Ultrasound guided Fine Needle Aspiration to confirm diagnosis.
Blessings,
Julie-SunnyAZ

Heard they use that
Heard they use that radioactive glucose and a "pet" scan for best determining what is in the nodes. Must be really difficult to find a surgeon to trust.