Hi again...
I heard from the Endocrinologist today and she said that my biopsy is Medullary cancer. Which is the 3rd in line of the thyroid cancers. I still have to go for more blood tests and back to the ENT to schedule the surgery, I think she said he's a surgeon. My mind started to wander after the word "cancer" so I didn't hear 100% of what she said. Since my lymph nodes are swollen and painful, I'm going to assume that it's spread there too.
Anyone reading this have thyroid cancer? Care to share? :D At least to give me an idea of what to expect. The only other time I've been in a hospital as a patient is in 1968 when I was born. ;D Or what does surgery do to SJS? Does it make it worse? I figured the dry mouth after the surgery is going to be a killer. I figured I'd sneak in my Altoids with me. The kicker of the thing is right now my Mom needs hip replacement surgery from a broken hip 3 years ago, she's got osteroperosis and just started meds for it. Though she's graduated from a wheelchair (for the past week) to a walker, so she's doing better.
Thanks for reading! Cheers!
Hi gsmraxe
I'm sorry to hear your dx. I can understand why you didn't 'hear' the rest of what she said. This isn't something that's happened to me but I know there are thyroid cancer survivors in here so I'm sure they'll be along.
SjS can swell your lymph nodes without the cancer doing it. I hope that's the case. The main thing with surgery and SjS is to make sure the nurses know what it is before the op. You obviously have a period before it when you can't drink but you can arrange to be allowed to sloosh and spit as it were!
Anyway - its important that it gets done so I hope it all happens soon. Keep us posted.
Take care - Scottie :)
Hi gsmraxe,
I'm sorry to hear of the diagnosis, and as Scottie said, there are some thyroid cancer survivors here, and I hope that they stop by soon and pass on some of their wisdom.
Here is a good place that you can get some information from, I often go there when I have questions about the thyroid.
http://thyroid.about.com/od/cancergoiternodules/Thyroid_Cancer_Goiter_Enlarged_Thyroid_Nodules_and_Other_Conditions.htm
Hang in there and please keep us updated, okay?
Take care -
Patze
Thank you Scottie and Patze. I'm finding a lot of info (from Patze's link too) about this. It's luckily slow growing, not as easy to treat as follicular and papillary, but not as bad as anaplastic. I just hope to get this over with soon and back to normal life :-) such as it is.
Thanks!
Check out the American Cancer Society's website. csn.cancer.org and look under thyroid cancer. There is a lot of information there on the discussion board.
You can register there online and put a query on the discussion board or chat in the chat room. They don't "sell" your email address so it is a "safe" site. Lotsa good people on there that are very knowledgable in this area. It is a great website.
pices,
Thanks for the site...It's a good one. I was also wondering about the surgery and if they have to remove my lymph nodes, how does that effect the immune system? I've been searching the net and can't find anything about it.
Hi gsmraxe
I hope that you are over the initial impact of your diagnosis. I admit that I have read your post a few times and wanted to reply, but I wasn't really sure what to say. Hopefully you have a bit more information from the sites that were suggested. It seems easier to deal with something when you are well informed. I just wanted you to know that just because someone doesn't reply to a post doesn't mean that they aren't listening. :)
Please take care...
forest
Lymph nodes are all over your body. They are like numerous filters. I really can't see them taking all of them out. They might take out one or two for a biopsy. The website and chatroom are great. I think around 5:30pm to 7:00pm you have the best chance of talking to someone in the chatroom. I don't know exactly all about how the immune system works except under active is a bad as over active. I think? w/treating cancer they suppress your immune system so the meds can attack the cancer and kill it. Then afterwards your immune system has to get built up again.
Hopefully you've gotten past the "deer in the headlights" shock on your diagnosis. It takes awhile. Yeah the word Cancer tends to hit an off or shock button. I had 2 years of "H&**" before a dr diagnosed me with indolent lymphoma. The rheum dr now thinks it is the SJS causing all the problems and not lymphoma but either way I am being "monitored" with no treatment. Thankfully they id'd it the problem with you and you can get early treatment. Some of us takes years to get a diagnosis.
Remember that your doctors, nurses, etc . are YOUR staff and you have a say in your treatment, etc. You have a right to ask questions and be informed. Be proactive with the doctors and take an active role in your treatment and health. Good Luck!
I am so sorry about your diagnosis and i hope you get the very best in treatment!! I have 9 growths on my thyroid and now will make sure i stay up to date on what's going on with this. Thanks for opening my eyes. Best of luck to you and let us know how your doing. :)
Quote from: Pisces24 on May 27, 2009, 04:08:06 PM
Remember that your doctors, nurses, etc . are YOUR staff and you have a say in your treatment, etc. You have a right to ask questions and be informed. Be proactive with the doctors and take an active role in your treatment and health. Good Luck!
I like this, but unfortunately, I'm battling with my insurance company. They don't think an overnight stay in the hospital is necessary, but the doctor wont do the surgery unless I stay overnight in the hospital. I've tried to contact the insurance company and they give me the "it's not your concern, it's between us and the doctor" and the doctors office tells me the same thing. I've contacted my works corporate HR department and they are looking into it as well. I was supposed to go into surgery tomorrow (6-2) but it's not happening.. I plan on calling the doctor tomorrow and see what's up, then if he wont deal with it anymore, I'll call the insurance company and have them provide me with a doctor that is willing to do this as an outpatient. If nothing else works, as the last resort, I live near the Mexico border, I can find a doctor down there that will refer me to the new hospital they just built. It's state of the art, from what I've heard and they have American doctors down there too. I'll just have to pay cash, but I know it's cheaper to pay the whole thing down there, than it would be to pay for just a night stay in the hospital up here. I'll just have to get a passport so I can come back to the US.
Insurance sucks sometimes. :-\
Hi GSM, Just to say that after reading your post,
I will never again criticise our wonderful National Health Service here in the UK.
Heres hoping you can get it sorted soon, and get the op over and done with..
Best of luck, Dolly.
Hi gsmraxe,
I'm sorry to hear of this "battle", and I sure hope that the doctor finally gets it straight and takes care of you instead of arguing with the insurance company!
Please keep us updated, okay?
Hang in there and take care of yourself -
Patze
Hi gsmraxe
My recent surgery was done through private health insurance here in the UK. The insurance company were loathe to let me stay overnight, but the consultant insisted I needed to, partly because of the SJS. Cold you remind the insurance company of that, and that, should you be ill following the surgery, it could cost them more long term?
Will be sending you positive vibes.
Kathyx
Gsmraxe,
Wow, same thing with my daughter...of course she finally got her thyroid removed and they
found another mass they missed in Ultrasound...but just getting through the insurance red
tape is a nightmare. She had to go through the same with this MRI she is doing today for
her brain Tumor. Now her Endocrine has told her that she has another mass where here thyroid
use to be...this kid cannot catch a break. The insurance companies in the US really need to
pull their heads out of their butts and realize they are messing with peoples lives. I hope it
gets straightened out for you..NO one needs that kind of stress!
JJ
Quote from: JJ on June 02, 2009, 07:59:28 AM
Gsmraxe,
Wow, same thing with my daughter...of course she finally got her thyroid removed and they found another mass they missed in Ultrasound...but just getting through the insurance red tape is a nightmare. She had to go through the same with this MRI she is doing today for her brain Tumor. Now her Endocrine has told her that she has another mass where here thyroid use to be...this kid cannot catch a break. The insurance companies in the US really need to pull their heads out of their butts and realize they are messing with peoples lives. I hope it gets straightened out for you..NO one needs that kind of stress!
JJ,
I'm really sorry about your daughter. I hope everything works out ok for her. Yeah, the insurance cos here are bad, between the insurance co and my doctor I think they'd rather see me die than come to a compromise. Either the insurance pay for the overnight hospital stay or the doc do this surgery outpatient...This isn't a difficult thing ???
I keep trying to figure out how peoples lives could come close to having a price tag
but as you well know we all do....was there ever a time that the value and quality of life was
more important than the dollar bill....the reasons for going into a profession was because you
wanted to make a difference and not about how much you could stuff in your bank..that an
insurance company would think of the person who is dulling out all their premiums every
month would want to prolong that investment by doing whats need to keep them healthy..if
its money that they love, omg it is just all so unbelievable in a way. No it shouldn't be all that difficult.....folks
shouldn't have to jump through hoops and beg to get what common sense says should be done,
done. I want you to know that I feel very deeply not only for my daughter but for you and the
rest of the human race that has to deal with these issues. It just breaks my heart. I really hope
they get it together for you.
JJ