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Tg rising..now what

amorriso
Posts: 186
Joined: Oct 2010

I just came back from my 6 month check up. I had neck ultrasounds done, plus Thyrogen stimulated blood work.

The ultrasounds were clear, my TSH fine, everything was great EXCEPT that my Tg has gone from 5.5 to 7.1 (both tests at different labs though)

So what do I do from here. My doctor has advised another check in 6 months, a PET scan and theN??? He also recommended that I research other Cancer treatment centers that may be able to help with my case.

I am a canadian living and working overseas...so where I go in the world to get treatment/consult doesnt really matter - as long as it works.

Any advice or recommendations??? Was really hoping for better news this time - I feel wonderful - it cant still be there..can it?

(I've already had the TT, bilateral neck dissection, and two rounds of RAI)

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

Sorry to hear that the Tg seems to not be stable. I suppose diff labs could be a factor. Do you happen to know if you have Tg antibodies?

I am iodine resistant and when my Tg began rising the first step was a PET scan which, in my case, lit up small nodules in my lungs. Are they proposing the PET now or in 6 months?

I have been under the care of Dr. Keith Bible at Mayo in Minnesota. He is a medical oncologist and researcher, very interested in thyca. Also great with patient education and care. I also have met with Dr. Steven Sherman at MD Anderson in Texas and Dr. Marcia Brose at th Hospital of the Univ of Pennsylvania. Other places doing research in advanced thyroid cancer in the US are Memorial Sloan Kettering in NYC and Johns Hopkins in Maryland. These are some of the major places in the US. You might be able to begin making contacts even if you are overseas. I live in Alaska and did much of my initial contcts via mail and email. I was able to send copies of records and films on disc and get some feedback before they saw me in person.

I feel good too! Very glad to have that! I have been trying chemo drugs to halt the growth of the lung nodules, which in my case are overachievers. Little buggers.

Best to you. Let me know if i can be of any help to you.
Eileen

amorriso
Posts: 186
Joined: Oct 2010

Thanks for the information and names. I will start my contacts this week to get some second third and fourth opinions!

My endo gave me the choice of when to do another PET scan - now or wait. I think I will gather some info, get some more feedback and then decide. My last PET in november was ok - so if its hiding somewhere its pretty small..

Also just had to speak to my boss - she was strongly leaning towards asking me to quit my job and go home! To what? no health care, no job, no home? She lost a friend to cancer a few years ago and now thinks all cancers are the same - spent about an hour convincing her that I am healthier than most of the staff (I'm a teacher), that I will likely live another 30+ years, and this cancer isnt like a leukemia in terms of how it affects daily life.

The struggles we face!

Thanks for your help -

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

Btw, i've been working full time through much of this. I have taken chunks of time here and there to do a bit of travel - much more for the mental break than for a physical need. It's not as though once diagnosed we are destined to sit in recliners. I feel pretty normal actually.

Hannah1
Posts: 63
Joined: Jun 2012

Hi Eileen, I also have small nodules on my lungs. Just finished RAI 2weeks ago and there was uptake on my lungs. My Endo Dr.
recommended to wait 3months and check if the RAI worked or not. She will check lab in 3months then will refer me to oncologist
If it did not work. Do you I think I should go see an oncologist now? Are you now on chemo drugs?she mentioned that if the RAI
Did not work that I might consider chemo. Any advise? I will really appreciate it. Thanks and god bless.
Hannah1

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

Hannah,
so glad to hear that you experienced uptake in the lungs. you might choose to get an idea of which centers of research may be nearest to you but if i were you i'd do just a bit of research at this point - no need to dive in. one step at a time.

i am on a chemo type drug called Revlimid. it's commonly used for multiple myeloma patients but is being tested for thyca patients with metastases. i have been on it for about 3.5 months. prior to that, for about four months, i tried Nexavar/Sorafenib which is a chemo drug of the kinase inhibitor variety. that was not terribly effective so we switched to the Revlimid which has been a bit better at slowing progress but neither drug shrunk or eliminated existing nodules in my lungs. i happen to know that i am positive for the BRAF mutation because tissue taken from one lung was tested for it. knowing this can be helpful because some therapies are known to be pretty useless if you have this mutation and others are more effective if you have it. but they need thyroid cancer tissue to do the test - can't be determined through blood samples, for example.

stay positive with the RAI. if you had uptake that is very good! i happen to no longer be avid so unfortunately i can't use it as a tool in my arsenal. if it works for you it's the best way to go as it targets thyroid cells. i'll be sending you good vibes as that RAI works in your system.
best to you
eileen

Hannah1
Posts: 63
Joined: Jun 2012

Hi Eileen, I'm so glad to hear from you. I am confused about this uptake. My Dr. told me that there was
Uptake in the lungs and some other parts which means there was metastasized in the lungs. Why do I
Have to wait 3months to know the result if it worked. I thought if there's an uptake it means it's working.
Is that right? I live here in Ca. How do i start researching? Can you give me an idea where to begin. I'm
Always worried about shortness of breath. Have you had any symptoms? When we're you diagnosed with
Lung metastasis? I just saw my GI DR. And said to do colonoscopy since there was also activity on my large
Colon. Scheduled colonoscopy on 7/19. Thanks so much for the info. Greatly appreciated. God bless

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

Hi Hannah,
I suspect the wait it to see how well that RAI is working. It continues to work for quite a while - it's not an instant zapping if you will. Waiting is the hardest but it's going to be important to let the stuff do it's job before deciding the next step.

I have shortness of breath but this was not initially due to the mets. In my TT they had to sever my right laryngeal nerve because the tumor had encased it - so I lost use of one vocal cord and it's stuck near the middle which is good for speech and eating, but not as good for breathing because it obstructs the airway a bit. Lately I notice it getting worse but I have progressive mets. When I saw my oncologist last week she said she would not expect me to have any symptoms yet. My endocrinologist has also remarked that the lungs can have a lot of nodules before outward signs occur. I think stress and angst can make it seem worse.

A small spot was noted by one radiation oncologist in 2009, right after my surgery but I was not diagnosed with lung mets until late 2010 or so.

My oncologist here works with an oncologist I met with at Mayo, Dr. Keith Bible - they confer on my records and films and make decisions about the next step. Dr. Bible has been outstanding and has spent time on the phone with me offering information about where studies are being done, who the major players are and where the major cancer centers/specialists are that know about complex thyroid cancer. Most of the things being done seem to be on the east coast: Johns Hopkins, University of Pennsylvania (Dr. Marcia Brose), Memorial Sloane-Kettering. Then there is also Mayo in Rochester (they have branches in FL and AZ). There is also Dr. Brian Haugen in Denver (I forget which institution he's associated with). Another is MD Anderson in Houston, TX. I went to MD Anderson about a year and a half ago to meet with Dr. Steven Sherman. He works with Haugen a lot. They all seem to know each other to some degree as it's a smallish group. Medical oncology has only recently been involved in thyroid cancer research. There was one other he mentioned but I can't recall the name. I have a notebook somewhere - I'll have to dig it up. Oddly, there are not many on the west coast. USC has a cutting edge endocrine lab but I don't think there are folks doing cancer research there.

As cliche as it sounds, one step at a time. I'll be thinking good thoughts for you - especially around the 19th. I've got a birthday right around there - another one! Not bad.
eileen

Hannah1
Posts: 63
Joined: Jun 2012

Hi Eileen happy birthday I think you said your birthday is around this date. I just finished my colonoscopy today and
a biopsy was taken from the cecum and ascending colon. Will get the result in one week. I hope everything will be ok.
Like you have said just wait and see for the result. I'll see my Endo Dr on sept. then I'll go on to the next step. I have
To do something before it get worst coz If it's worst then you will be bound to bed. Pls. Keep me an updated. I still feel
ok now. Thank you and god bless.

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

Glad you made it through the procedure and I so hope your biopsy is clear. I have a follow up CT tomorrow to see how the Revlimid chemo med is doing for the lung mets. Probably won't hear any results until my onco appt next Wednesday.
Best to you!
eileen

Hannah1
Posts: 63
Joined: Jun 2012

Hi Elieen, hope that your ct was ok and that the chemo drug is working.
I will be praying for you. Miracles do happen. My Dr called and recommending
A small bowel test. Will have the test sometime next week and hopefully
Will get the biopsy result. I'm always tired eversince after the RAI procedure.
Even i already slept 8hrs I'm still tired. Did you have this experience. Do you
think I am hypo? I'll let you updated. Take care and god bless.
Hannah

Hannah1
Posts: 63
Joined: Jun 2012

Hi Eileen how are you? I haven't posted for a while , been busy with appts and work. How was your CT ? I sure hope
Revlimid is working. Done with small bowel test but no results yet. Had an appt. with my oncology Dr and recommended
to have a biopsy of the nodule in the lungs. I will have a consult first on the 13. I Also had a bone marrow biopsy
last Wednesday coz labs especially hemoglobin/ hematocrit has been low eversince after my chemo and it's been 8yrs
now. Have had a lung biopsy? Did it hurt , do they put you to sleep? Getting nervous about all this. Bone marrow biopsy
sure hurts. Hoping to hear from you. God bless.

Baldy's picture
Baldy
Posts: 229
Joined: Mar 2011

Hi Hannah,

I have a nodule in my lung that is 7mm and near the edge of my left lung. I've had three CT scans that have shown no growth as yet. In talking to my Pulmonologist about what my options are, she said doing a biopsy would be very difficult since it's such a small target and lungs are constantly in motion even though it is near the edge. How large is your nodule and where in your lungs is it? Has it gotten bigger? Have you seen either a Pulmonologist or a Thoracic Surgeon? According to my Pulmonologist, it would be major surgery, anytime they go into the chest cavity is serious.

Alan

Hannah1
Posts: 63
Joined: Jun 2012

Hi Alan thank you for the input. I have10mm nodule on my
left upper lobe. My oncologist recomended me to this Dr.
Specialize in periphereral/neuro-interventional radiology and
Endovascular surgery. Still waiting for the date of biopsy since
they are working on my insurance coverage. So you never did
Have a biopsy? The Dr. Said its an outpatient surgery. Will be
done in the hospital. I will let you know the scheduled date. I'm
scared of the side effects but I have to do it to see which cancer since
I have 3 types of cancer. Different cancer have different treatments.
Will keep you posted and thanks again.

Baldy's picture
Baldy
Posts: 229
Joined: Mar 2011

Hi Hannah,

I haven't had a biopsy and from what the Pulmonologist said on my last visit, unless the next CT scan shows growth, I won't have one either. My nodule is classified as a "ground glass nodule" because of the way it looks on a CT scan. About 25 years ago I tested positive for TB and was on Isoniazid for six months or so. This drug encapsulates the TB colonies in an infected lung so that they can't spread and eventually die. The nodule the CT scan is showing {and a large number of small calcified bodies that it also shows} is {are} consistent with what would be seen post TB/Isoniazid. Hopefully this is all the result of my bout with TB 25 years ago.

If I'm understanding you correctly, your nodule is not "in" your lung but "on" your lung. If so, it would be much easier to find.

Alan

Hannah1
Posts: 63
Joined: Jun 2012

Hi Alan
Glad to hear that your nodule was diagnosed 25yrs. Ago. That is good news. My lab results
reads " numerous pulmonary nodules in the lungs bilaterally measuring up to 8mm in the
Posteromedial right lower lobe, smaller nodules ranging from 2-6mm and innumerable
Pulmonary nodules largest measuring 10mm in the left upper lobe. " what do think about
this result. It says " in the lungs" what does it mean ?

Baldy's picture
Baldy
Posts: 229
Joined: Mar 2011

Hi Hannah,

They found the nodules recently, last year around this time. I'm hoping the cause was the result of what happened 25 years ago and not cancer metasis.

It clearly says "in" the lungs. What your doctor is telling you and what mine is telling me about lung biopsies seem to me to be different. Mine is saying ANY surgery within the chest is serious and finding the nodule will be difficult, yours is saying it will be an out-patient procedure but in a hospital. Maybe you should get your doctor to clarrify what he means and maybe you should also get a second opinion about the seriousness of the biopsy operation. {A medical opinion, not my opinion, I'm just guessing. Maybe you can talk to your Primary Care Doctor on the phone, say something like ... "From what I'm hearing this isn't as easy as the specialist is telling me, what do you think?"}

He may be saying you'll be out of the hospital quickly, no more than over night. But that was the case when I had my total thyroidectomy and neck disection and I was in the OR for over 4 hours, but in the hospital room afterwards for less than 24 hours.

Alan

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

There are several methods used to biopsy nodules in the lung, depending on a variety of factors, including where the best sized nodule is to biopsy. Bronchoscopy involves scoping down the throat into the lung. I think that one requires a single overnight stay. Then there is the needle biopsy which can be used when the nodule is near the chest cavity. I don't know if that requires a hospital stay. Surgical lung biopsy is where you are in surgery, fully sedated etc. The surgeon goes in between the ribs. This can be accompanied by VATS (video assisted thoracic surgery). That is a serious surgery and is what I had done because my best nodule (biggest), although located close to the edge of my lung and near the chest cavity, was very near the heart so the docs were unwilling to stick me with a needle there, even if CT assisted. Hannah if you have any doubts of course ask your doc but it sounds like they know what they are doing. Not all methods of biopsy in the lung are considered surgery.
eileen

Hannah1
Posts: 63
Joined: Jun 2012

Hi Eileen,
I will have my lung biopsy today at 1pm. The Dr said its CT guided biopsy
Per dr the smallest they can biopsy is 10mm nodule. I Just want this to get
over with and have peace of mind. Keep me in your prayers. Thank you

Hannah

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

Hope it went well Hannah and that you are on the way to a speedy and pain free recovery. Please keep us posted.
e

Hannah1
Posts: 63
Joined: Jun 2012

Hi Eileen, biopsy went well but OMG had severe pain and cought out small amount
of blood right after the procedure. They said that it's normal after the procedure. They
had to give me extra pain thru IV but did not work sent me to recovery floor and took
them a long time for pain pill. It was so painful I can't get out of bed to go to the bathroom.
Stayed in the hospital for 6 hrs. It still hurts especially when taking deep breaths. The Dr.
said its due to irritation from the needle. I hope it's all irritation. Will keep you posted and
thank you for listening.
Hannah

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

Hi Hannah. Well, I am still awaiting the report from Mayo Clinic about the CTs and what they recommend I do next. They have the films and my onco here tells me that Dr. Bible will be faxing her and calling me. Such a long wait!

I did have a lung biopsy last summer - a surgical lung biopsy. There are different methods of lung biopsy though. If they are near the lower edges of the lung I think they can do a needle biopsy. I seem to recall a friend with lung cancer describing his as an out patient procedure (a bronchoscopy if I remember correctly). Mine, due to the location of the largest one which was their target, involved full on surgery and I was in the hospital for three days. Oddly, the most painful part of the whole thing was my shoulder because the muscles were unhappy after having had my arm positioned at some odd angle all the time I was in surgery. I did have a drain too and it looked awful but it really wasn't that painful. They gave me pain meds but I hardly used any once I was home. My recovery was not too long nor too difficult, thankfully.

My surgery was done back east, at the Hospital of the Univ of Pennyslvania. Very good place and I have family near there as well. My surgeon was great. I had a melanoma removed soon after my thyroid surgery so we wanted to be sure that what was in my lungs was indeed thyroid cancer and not some other cancer. A bonus was that I met with Dr Marsha Brose at UPenn who does research in thyroid cancer and has a few trials. She had the removed lung nodule tested for the BRAF mutation as part of a pre-screening process (it was positive). Nodules do have to be of a certain size to biopsy I think. I so hope yours is in an easier spot. The one they targeted on me was on the right lung, near the edge, but near the middle of my chest (close to the heart) so no needle for me!

Let me know how you are doing. Praying for you too. I've not had a bone marrow biopsy but anything related to bone marrow seems to have a reputation for being painful. Hang in there my friend.
eileen

Hannah1
Posts: 63
Joined: Jun 2012

Hi Eileen, how are you? How was your ct scan? Been so busy with appts.results from small and large bowel
were neg. bone marrow also neg. Seen my oncologist and recomended lung biopsy to see what kind of cancer
since I have 3 kinds of cancer. I have see a peripheral/neuro-interventional radiology & endovascular surgery Dr.
Setting me up for lung biopsy, now working on my insurance coverage. Hopefully I'll get a date next week
It will be an out patient but will be done in the hospital Per dr i have Bilatera pulmonary nodules largest measuring
10mm in the left upper lobe. The Dr. will try to biopsy this 10mm nodule and hopefully will get a result. I am really
scared about this procedure and side effects. What was your nodule size at your biopsy?how did it go. He said he will
Numb the area and some sedation. I have a very low pain tolerance that's why I am very scared. Can't even sleep at night
Thinking of it. Can't wait til this is over. Will let you know when I'll get it. Pray for me please. I hope you are doing fine let
me know chemo trials. Take care.

Hannah1

CherylMike
Posts: 118
Joined: Oct 2009

I had my year out scan, which came back clean. However, my bloodwork showed that my tumor marker was elevated to 4.7. I had a mapping ultrasound (clean) and a PET, also clean. My endo repeated the bloodwork 5 months later and the tumor marker was undectable. My tests were all run from the same place. I had a TT and RAI only. Both of my tumors were encapsulated - no visible spread to my nodes. My husband passed away of head and neck cancer in 2009. Most of his treatment was through the Mayo Clinic in AZ. However, we flew to MD Anderson, in Texas for second opinions. They are a top notch cancer center.

I do not know why my level fell like it did, but my endo really did not seem that surprised. Not sure if that is a "normal" thing - with cancer, whose to know what is normal? Wishing you the best~cheryl

amorriso
Posts: 186
Joined: Oct 2010

Thanks - thats the type of news I like to hear! I really feel that my endo is over reacting..or that he simply is not as up to date on things as he should be.

I did make contact with MD Anderson center, but the cost is way way beyond my reach. (20 000 for the initial appointment). I will continue to try to find other experts nearer to where I am. Though the survivors seem to be the best experts so far!

Cheers

boitchik
Posts: 10
Joined: Feb 2011

I am in one of the major centers mentioned. They are experts at monitoring but in the event you suffer metastasis (as i did) you may not be missing out on much if you are already being treated (levothyroxin). There is no chemotherapy, only enzyme blockers which hold progression for about a year.

Beyond that there may be clinical trials inthe pipeline which the major centers, probably connected to the pharmaceutical guys, would be first in line for.

Any other people comments ?

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