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Blood work (tumor marker) shows 4.7 should be 2

CherylMike
Posts: 118
Joined: Oct 2009

Had my year out scan 2 weeks ago. Immediately after the scan, I went and had a blood draw that was sent to CA as a "back up"/baseline. The scan was clean, but the bloodwork came back as 4.7. The doctor said it should be less than 2 (I am assuming this was a test for thyroglobulin). I am going for a mapping ultrasound on my lymph nodes tomorrow. The doctor said she is checking for cancer in my lymph nodes (I am B-RAF positive). I am worried that the scan was wrong because I ate cranberries while on the LID diet. They were not on the prohibited food list on the Thyca website and are even included in some of the recipes. Do you think this is possible? Is 4.7 really high? I am very worried. Has anyone had this happen to them? Any help would be greatly appreciated.

sfl67
Posts: 55
Joined: Nov 2009

Hi CherylMike,

I had my one year scan Sept. 2010, the scan was clean but my stimulated Thyroglobulin was 2.1 and in the "danger Zone" according to my endo. I have had enlarged lymph nodes but are not large enough to be considered a problem according to my doctor; he did however order a PET/CT Scan after the full body scan, this showed nothing as well, but he thinks it is most likely residual cancer. He said a stimulated Thyroglobulin of 5 was his cut off for another, larger dose of radioactive iodine. My blood is also sent to California each time. I was not tested for the B-RAF gene at surgery but I have stage 3 Hurthle Cell Carcinoma; my cancer did not respond to the I-131 and my surgeon was not able to get clear margins, and even microscopic tissue would cause recurrence. I'm not sure about the cranberries, but I was very rigid with the LID as well. I feel your frustration and am sorry we are all dealing with this. I wish you well and am sorry I could not be of more help.

boitchik
Posts: 10
Joined: Feb 2011

It is my understanding that it is the stability of the TG number, over a few tests, that is important. If TG is stable (does not rise over time) that is a good sign. My own has hovered around 12 and I have metastasized HCC (lungs). In addition TG testing should be done in one lab as the test is not standardized. These statements are based on my consults at Sloan Kettering.

CherylMike
Posts: 118
Joined: Oct 2009

My TG number has risen (6 months ago it was under 2, now it is 4.7). I have had the test done twice and it has been sent to the same place both times. I had my ultra sound done today and should know by Friday the results. I find it interesting that the person who performed the ultra sound asked if my endo had ordered a PET scan. She has not. I am very worried that my RAI did not kill all the cancer. When the pathology was done on my tumors, both were well encapsulated with no spread. I do not understand how I could have cancer now? Does everyone here have an endo as their primary caregiver for their cancer? Is there an onocologist that specializes in thyroid cancer? Thank you for all your help

alapah's picture
alapah
Posts: 260
Joined: Oct 2009

It's been my experience and general understanding that by and large endocrinologists are the main docs for folks with thyroid cancer. But the key is to find an endocrinologist who specializes in thyroid cancer. Not all do. My endo has been my main doc though just recently I was referred to a medical oncologist because I have growing metastases in my lungs and need to try chemo drugs to halt the growth. Few medical oncologists deal with thyroid cancer, though this is a developing field. According to my medical oncologist at Mayo, it's only been in the past 6 or so years that medical oncology has directed attention to thyroid cancer because 1) they had few tools to combat thyca and 2) the need for their expertise was very low. Only in cases where RAI is no longer effective do they see patients with thyca. My local oncologist is consulting with the Mayo doc because she herself has limited experience dealing with thyca and the Mayo doc has more - they are involved in trials and research.

Do you happen to know if you have thyroglobulin antibodies? It's important to know in terms of understanding the Tg reading. Regardless of whether or not you have antibodies, you should be getting other tests done, such as a PET/CT if your Tg is on the rise and ultrasound fails to come up with suspicious lymph nodes or areas in your neck. I've been told by my docs that RAI is less efficient/effective at reaching thyca in lymph nodes and some other areas so it is possible that RAI was effective in some areas but not others. Could be that you have lymph nodes harboring thyca. These could be surgically removed or possibly dealt with through a process called alcohol ablation (Mayo has info on this on their website).

When my Tg began to rise, we first did the ultrasound and a tracer dose of I-131. When neither showed anything suspicious my endo ordered a PET/CT which then showed mets in my lungs. I think that may be why your ultrasound tech asked about orders for a PET. The PET could potentially also light up lymph nodes that are not so easy to reach with ultrasound - it would not necessarily mean you have mets. Sometimes docs or insurance are reluctant to run a PET but if all other less invasive tests, such as ultrasound, fail to reveal the potential cause of the Tg increase, it would seem wise to get one. It does expose you to radiation and it is kind of a big deal but sometimes it is the tool that is needed. Your endo may just be waiting to see the results of the U/S before moving on the PET. They may even order a tracer of RAI next to see if anything lights up.

I know it is rough. I have been there. Hope you can stay strong and very best to you.
eileen

sunnyaz
Posts: 582
Joined: Oct 2010

Did they test your TG antibodies too? If you have antibodies built up to the Thyroglobulin, this can indicate a false high in the number. Our bodies are programmed to create antibodies, just like a virus. I have my regular Endocrinologist and he referred me to an Oncologist that specializes in Endocrine Cancer and is a surgeon. They are out there, you might have to do some research however. I feel very fortunate to have this doctor on my side. He has a great personality and really keeps me informed. His name is Dr. Marlon Guerrero and he is at the University of Arizona Cancer Center in Tucson. Maybe you could do a search of Oncologists in and around your area to find a specialist.

Blessings
Julie-SunnyAZ

alapah's picture
alapah
Posts: 260
Joined: Oct 2009

not to scare you, but antibodies can create a false low Tg reading too. They make it hard to really gauge the status of the thyroglobulin.

CherylMike
Posts: 118
Joined: Oct 2009

Is this test normally run with the tumor marker test? I have not heard, but will ask my doctor. My ultra sound came back negative on the lymph nodes. Why would the Tg reading show that it has increased in the past 6 or 7 months (from less thabn 2 to 4.7)? If the RAI scan showed no traces of cancer and the mapping ultra sound was negative, does that mean that the Tg test was showing a false reading? I am really confused. Sunny, I live in Gilbert, AZ but am wondering if I should try to make an appointment to see your doctor. They opened a MDanderson here in Mesa last month. I was going to schedule an appointment with them to try and get a handle on what is going on with these conflicting tests. I do not know if I should push for further testing, eg a PET scan, or let it go. My husband passed away of head and neck cancer. He had a swollen lymph node on his neck and the doctor brushed it off. Six months later he had a lump under his arm, once again the doctor brushed it off. The neck tumor enlarged so much over a weekend, he went to a walk in clinic where the doctor asked if cancer ran in his family. Had we pushed harder for a dx when his neck was swollen, he would have had pretty good odds of beating his cancer. After it had gone below the collar bone, we were told he had 3 to 6 months. (He lived for 2 years). Because of this, I think I might be over reacting to the test results. Thanks everyone for all the great info. This site has really helped me over the years. Thank you! ~cheryl

alapah's picture
alapah
Posts: 260
Joined: Oct 2009

Rising Tg indicates that there are thyroid cells remaining in your body. Tg doesn't automatically indicate cancer, just thyroid cells which produce the thyroglobulin. These cells could be cancerous or not. However, often in thyca patients rising Tg can be a sign of lingering cancer. No uptake of the RAI could indicate that the cells are no longer avid to take up iodine. This happens sometimes. If the Tg is on the rise and ultrasound and RAI reveal nothing, I'd think about getting a PET/CT. Ask your docs what they think may be going on - why the tests failed to reveal the source of the Tg.

Antibodies are tested separately from Tg, but that test can be done on the same blood sample. Antibody counts can rise and fall as well. The thyca.org site haas a pretty good summary about Tg and TgAB labs: http://www.thyca.org/thyroglobulin.htm

sunnyaz
Posts: 582
Joined: Oct 2010

Dr. Guerrero is wonderful. Our cancer center is state of the art and they really make you feel welcome there. You might find that this is all nothing, but it wouldn't hurt to consult with him. My regular Endocrinologist is at Western Endocrine here in Tucson, his name is Dr. Parker and he referred me to Dr. Guerrero. Dr. Parker calls him "the clean up crew" because he is very good at fixing other doctors mistakes and getting patients back on the right treatment track. Dr. Parker will be retiring soon, but another doctor in his office is Dr Barsony and she is fabulous as well as Dr. Insel. Dr. Barsony will be taking my case when Dr. Parker retires. I really love her. I can get you phone numbers if you are interested.

Hang in there!

In my prayers,
Julie-SunnyAZ

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