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Scared and Confused...metastasized to my lung...

tbanda72
Posts: 1
Joined: Jan 2008

I'm 38 years old and I just found out yesterday that my thyroid cancer metastasized to my lungs...again. Really I don't even know if the RAI treatment helped from the last time (Feb 2010), I'm scared and don't know what to do. My doctor seems as if they are clueless on what to do or what's really going on. I feel that I get the run around when I aske questions. I don't have any insurance , so I have been going to a clinic and it seems that they really don't know what to do or what to tell me. I'm scared as all get out!!!! I took the I131 treatment last year for this same thing and I still have cancer. What am I to do? I don't have funds to seek a second opinion. When I did have insurance, when I was first found out that I have pap. thyroid cancer back in June of 2004, they seem to make sure I got all the necessary treatments and they seem to care more. Now that I don't have insurance and go to an endo clinic, it seems like the don't care as much....I get the run around...I have to stay on top of them about my thyroid cancer issues and I'm constantly calling them....that I think the cancer is back and they take me as a joke. I keep hounding them until they see me and do blood work...that's when they will find that my tsh levels are off and my tg levels are up. Then they act like they care. Until the next go around, which is now. I had to do the same thing again....call them...hound them to see me...get the run around again...finally get blood work done again....tsh levels up again...tg level up again....now finally CT scan...metastasized to lung once more or maybe it never left...I don't know! I'm, scared, I don't even know what options I have. Can someone please guide me in the right direction?????

nasher
Posts: 507
Joined: Apr 2010

I have heard that before about doctors not caring as much cause you don't have insurance.

see if the doctors will take questions via e-mail or such (mine will and will normally answer them within 3 days)

as for the re-occurrences I am guessing you have BRAF mutation (Sunnyaz can explain that one better).

realize that they want to get you out as quick as possible cause of the lack of insurance so I have found printed out questions or e-mailed questions are normally better.

do you have a printed out copy of your medical records? if you ask they are required to give you one (for a nominal fee) but once you get it if you keep up with it they will normally print out that sessions notes and comments as well as most recent lab reports for free.

you can also get the CT scans copied onto CD again for a nominal fee (bring a few blank CD's and it will be cheaper if they plan on charging you)

realize most people will not hound the doctors about labs and such so its a cost saving method to ignore your request for labs as long as they can cause most people will give up on asking for them.

unfortunately for you and anyone else without insurance you are going to have to keep all the lab notes and doctors notes and follow the trends yourself... bring copies of the pages that show the trend and concern with you (never your original copy) and highlight the trend... make it easier for the doctor to look and listen to your problem rather than just pass you along... bring someone with you to take notes... bring printed questions with a copy for yourself so they can go down the list and you can write answers on your copy of the questions.

if they don't answer your questions good enough rephrase them and next visit ask again.

most the clinics for people without insurance are so packed with people that the doctors will not be able to answer your questions.

ask your questions here we might be able to answer some and maybe give you a better question to ask the doctor instead.

learn the doctors lingo so they don't have to spend time translating to English and you don't have to leave with a WTF did he say.

graph out your TSH and TG levels as well as any other lab levels that look important to you... hand the doctor a copy.

my copy of my medical record is over 1 foot tall... and i have 3 copies of it...

again see if they will take your questions VIA E-MAIL instead of calling that way when they are not busy they can look over the questions instead of having them write them down and answer them for you. ALSO when they respond and don't fully answer the question you can send it back to them with a reworded question (and all the previous questions and answers) it also gives you a hard copy of whats happening with you and you can add this to your medical file... sure its not officially part of your record but it is the questions and answers that you have asked and if you get sent to another doctor you have a list of what they told you as well.

again post your questions here we may have answers and we may reword them so your doctor gives you better answers.

Nasher

alapah's picture
alapah
Posts: 259
Joined: Oct 2009

I have lung mets too, and it is scary but there are some folks out there doing research in thyca and mets to there is hope. I myself do have the BRAF mutation but just because you have mets does not mean you have this tumor mutation. It's an expensive test to run and it can only be done on tumor tissue (not a blood test). It may be good to know at a certain point but not critical right now.

I am not sure how the lack of insurance will affect you but I can say that I have learned that it is important to have an endocrinologist who is well versed in thyroid cancer. Do all that you can to find such a person. Not all endos know much about it, and fewer know how to help patients with metastases. I have a doc who is pretty familiar with thyca and also willing to network with other specialists. I am no longer able to use RAI because they have determined I am not avid for iodine. I also seem to recall hearing or reading that RAI is not always as effective in reaching lung or lymph nodes so sometimes that alone cannot do the job. Patients with typical slow growing thyroid cancer may live a very, very long time under monitoring with no chemo or radiation. Believe it or not, sometimes the nodes just sit there, remaining rather inactive, causing no ill effects.

If you have a more aggressive type, even of papillary thyca, then you may need to work with an oncologist. I am at that stage because mine is faster growing. Not many oncologists know how to treat thyca with chemo drugs as it is only in the past 6 or 7 years that this has been in practice. I am not sure where you are, but the major places around the country that are working on chemo applications for thyroid cancer include: MD Anderson (Houston, TX), Mayo Clinic (Rochester, MN), Memorial Sloan Kettering (NYC), Johns Hopkins (MD?), University of Pennsylvania (Phila, PA) and a few others I can't think of off the top of my head. If you have mets you need to be monitored with bloodwork and CTs. Try to make sure your Tg levels are run by the same lab every time to ensure that the same assay is used and the results are comparable. Your TSH needs to be low - so as to be suppressive. And I also recommend keeping copies of all of your labs, films, doctor's notes, etc. I have a stash and keep a log and all of that has been very helpful in going on referrals or seeking second opinions.

There are great people on a yahoo group called adv-thyca who have lots of experience with the same circumstances you are facing and can be of help to you. I am on that group (as yukonbean) and have learned a lot from folks there. They may also have some recommendations about how to approach this without insurance. I so wish I could be of more help on that front.

Stay strong and keep us posted. Best to you and hang in there.
eileen

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