Hey guys,

So I saw my thoracic surgeon for a follow-up and he says that he wants to send me to an oncologist to see if I'll need radiation for my old nemesis, the thymoma...He thinks that I should get it because the tumour was so large (he says that in total, it was 9cm), that he thinks it'll come back...While I was there, they also ran some genetic tests on me....They're doing some study to see of there's a gene for thymoma and other cancers...

This sucks...I really don't want to have radiation, but I also don't want the tumour to come back...I read that my type usually doesn't come back, but i think that because it was poking through the fat around my thymus, this means that it was 'invasive,' sorta between a stage I and stage II...

For those of you who've had radiation, was it really terrible? How much did you have to have? What was the procedure like?

The only good thing about it is that it really ensures that it wont come back...But I just recently read a study for stage I and II AB thymomas saying that without radiation, the 10-year survival rate is 93% and with radiation, the survivial rate is 96%...So it's like, yeah, do I even need to do it?

My biggest worry is that it'll grow back somewhere else, especially now that I don't have a thymus....I read about some guy whose thymoma grew back in his brain -but that was after 9-years of having a thymoma in his thymus (he didn't want to have it removed for some reason and it continued to grow over a period of 9-years)....

This thymus/thymoma business is so confusing...I wish that there was a thymus specialist...The thymus seems pretty important...

I've been thinking about it lately...I've been having strange symptoms for almost 10-years....Weak chest, weak fingers,twitching, sweating, intolerance to heat...But it was so subtle, and so insidious that I don't think anyone could have ever figured out what was wrong unless someone ordered a CT scan (I wish someone had since I had chest tightness and 'cramps' everyone once in a while too)...So anyway, I've been thinking...If my thymus has had a tumour in it for let's say, 8-10 years, that means it was in there while I still 'needed' my thymus...The thymus is supposed to start to involute after the age of 18...So is this why I have so many autoimmune diseases? My thymus never got to complete its purpose? And does this mean I'll prolly get more that I don't have a thymus at all? I know that no one prolly knows the answer...i'm just sorta typing away...I just find it strange that plenty of people get 'paraneoplastic' diseases (aplastic anemia, myasthenia gravis, hypogammaglobluneria, stiffman's diseases, neuromyotonic, cramp-fasciculation disease, rippling muscle disease, Lupus, pseudo-obstruction of the intestine) after they have their thymus removed...Sorry, again just sorta talking away...

Talk to you guys soon

Is that a new study? A year and a bit ago when I was facing this decision the recurrence rate of cancer for those who had thymomas was quite high if not treated and completely removed.

Radiation: Yes it is really terrible. That said, given the same choice again; I'd do it again if I had to. I was in the same state as you (9.5 cm thymoma, just starting to expand past its capsule). I suppose there could be the option of close monitoring for recurrence and do the radiation when/if it becomes needed, but that'd need very frequent xrays and may require radiation and/or chemo therapy anyway.

I had to have 5 weeks, 5 days a week treatment. They didn't tattoo me like they normally do because of the thymectomy scar. Permanent marker and clear surgical tape were used for their markers. You get a vacuum formed pillow configured for you, lie on the table and get burned (you don't feel a thing.)

The radiation therapy will exhaust you. You will want to be on disability when you start (if you choose to do this). First week was OK, after that I was dead beat tired every day. Naps are important to get through the treatment.

I was burned during the process, throat, chest, back and lungs. Like a sunburn on the chest and back, worse internally. Long term, chest and back are very sun sensitive now, cannot go suntanning (not like I ever did anyway ). My lungs are in rough shape from the burns and the scarring caused plus residual scarring from several pneumonias I've had this year. Pneumonia is a known side-effect of radiation therapy around the lungs... if you develop a cough, don't wait... get it treated early.

Nicknerd,
Sorry about all you are going through with this and the probability of radiation. I don't have any personal experience with radiation. My coworker went through it for cancer he had in his lymph glands in his throat. He lost weight because it caused his throat and mouth to be very sore.
I will be praying for you.

ckitty60

Here is a link to the study.

http://www3.interscience.wiley.com/j...TRY=1&SRETRY=0

Oh boy...That does sound really terrible...I'm sorry that you went through that...Was yours an AB stage I too? Did Dr. Keshavjee do your surgery?

Well, Nicky, isn't that a kick in the head. I think a 2nd opinion from an oncologist/hematologist is a great idea. Maybe even a 3rd opinion from an expert in thymomas, if you have one in your area.

That begs the question: Is anyone an expert in thymomas?!

It's rare and has not been studied a lot. When I was considering a thymectomy way back when it was hard to find anything conclusive on MG and thymectomy let alone MG and a thymoma. Here are a few articles, which you've probably already seen.

http://ats.ctsnetjournals.org/cgi/co...ract/79/6/1834

http://books.google.com/books?id=Nye...iation&f=false

http://www.cancer.net/patient/Cancer...itle=Treatment

http://www.ncbi.nlm.nih.gov/pubmed/12400741

http://cancerweb.ncl.ac.uk/cancernet/201248.html

I suppose you could be followed closely for awhile to see if there are signs of it coming back. But the ironic thing is that radiation from CT scans if very high; probably as high as radiation therapy.

You asked a lot of questions and now I am dizzy! Autoimmune issues are complex and I doubt the only causative factor is being without your thymus. Having any kind of surgery could kick off an autoimmune disease. I got celiac after my hysterectomy. But stress and lots of other triggers can bring on a disease too. I think we all have the chance of having an AI.

I felt like that last paragraph was like a math problem I had in high school but couldn't figure out. So what age are you? When did you start having problems? When did the sweating start in relation to that?

I think it was Heat Intolerant who asked if you've been to the DINET site. You probably have. I think autonomic testing might be a very good idea for you - at some point.

I'm sorry you're having to consider radiation. If you were to have to have chemotherapy, that and stem cell therapy might even make the MG go away. And radiation, even though it's in one area, makes me wonder about further cell damage and even more cancer. And what it does to the heart, etc. Sorry, that's the way my mind works too.

That's great info Brennan. I'm glad you can share what it's like to have radiation. I have no idea. I'm sure it was not fun.

There are new types of radiation therapy now. I think it was Mayo Rochester who recently developed something for thymomas. Google thymoma and Mayo and see what you find. I'd do it but am worn out today.

Well, I wish you luck in deciding what to do. I can't imagine having to face this one down. Hang in there.

Annie

I'm so sorry

Just into Stage II - Contained to the thymus but it was no longer encapsulated (microscopic protrusions past the capsule)

Dr. Brian Johnson did my surgery... a very professional and competent thoracic surgeon here in NB. He was the guy who first diagnosed my MG too.

Dear Nicky, I'm so sorry for all you're going through. My dad had radiation for his cancer previously, and I think it affects everyone differently. It essentially concerns the state of your body, as in those with a healthier stronger body can take it better. My dad's 70yrs and when he went through it, he took it much better than most of the younger people. He didn't really have much side effects, and even drove himself to the clinic to get his daily radiotherapy treatments. Lol. He was on chemo and radio at the same time then, and he took it okay. The only thing was that parts of his body appear brown after that (burnt I think), and he often felt that the part where the tumour was at was hot. Try to take more cooling stuffs, and build up your immune system when you can so that less side effects will occur. different side effects are also expected for differnt parts of the body where the treatment will be at.

So don't stress yourself, discuss your options with the doctor and see what he says. Will be keepin you in prayer, you'll be just fine!

Im sorry that you will have to have radiation treatment. Ive known people that have had it and it isn't a great deal of fun.

I hope they manage to sort it out soon and you start feeling better.

My thoughts are with you.

Love
Rach

Hey Nicky,

I'm so sorry you may have to have radiation treatments. I've not had them, so I can't help you there. Good luck with your appointment with the Oncologist and have plenty of questions prepared. I wish you all the best. Take care and I will keep you in my thoughts & prayers.

Big Hugs,
Pat