Gonna prolly need radiation
 

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:eek:), 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.:hug:

ckitty60

Hey Brennan
 

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! :cool: 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. :hug:

Annie

:grouphug: I'm so sorry :grouphug:

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.

Nicky
 

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!

Hi Nicky
 

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

Hi Nicky!

So very sorry about the radiation. My best friend just went through 5/week for 6 weeks and said it wasn't as bad as she expected it to be...and I hope that is the way it will be for you. Her skin did get burned. but the doc gave some special ointment that helped a lot.

I think you are asking great quetions - and am hopeful your docs will give you well informed, reasonable responses. You have a right to get the answers you seek.

Take care - and pls let us all know how you are doing.
Sue

Thanks, everyone, for the kind words, prayers and advice...Sorry that I didn't reply sooner. Despite this new thorn in my side, my MG symptoms have been so minimal lately, that I've been taking advantage of my voice...My sister and I sang Karaoke tonight and we had a lot of fun...

I really don't think that I'm going to go through with the radiation...Mind you, I don't even know if I have to have it yet...When I was admitted to the hospital a month or so ago, the thoracic surgeon on call told me that the oncologist recommended that I not have adjuvent therapy...So it seems like he already made his decision...The thing is, that my actual surgeon (who was on vacation at the time of my admission to the hospital) is awesome...and he saw my tumour, and how it was growing...So HE thinks I should have it...My brother-in-law thinks that I should go with his advice, but the oncologist seems like he would know the best since he's a specialist in cancer...And these studies I've come across, especially the one I posted, seem to side with not having radiation...But there's always the worry that there are little thymomas lurking and waiting to sprout (those evil buggers)...Like what Annie said, though, the thought did cross my mind that maybe the CT scans are strong enough to destroy them...

Anyway, thank you everyone for the kindness...Sorry to be such a downer...I hate relaying bad news...I want to get better so badly, and then my body's like, "sorry...we're not done with you yet muahahaha!" Too many disease, but maybe the tide will turn...I hope so...At least the MG is remitting for a while...

Nicky:grouphug:

lol. I once thought perhaps I'd glow in the dark with all the contrast they've injected to me during all my ct scans. Haha.

thanks for the update Nicky. You're a strong girl and you'll be fineeee!

Not getting radiation therapy is not bad news ;) If my cancer was entirely encapsulated I wouldn't have and I'd probably be a lot better off now for it.

That said... if I were you, I'd arrange to talk to an oncologist directly. Get all your questions answered and make sure you have someone to keep an eye on things so you don't develop another thymoma.

Best of luck, don't let it get out of hand on you.

Cheers,

Brian.

Not too Bad
 

Hey Nick,

I had radiation last year (before my onset with MG) for a thymoma. It wasnt god-awful bad. I personally think the MG symptoms are worse. You will burn and scar and your throat will hurt. During the last few weeks I was more tired than usual. There are meds to take for the soothing of the throat, etc. The radiation itself does not hurt. You sit on a table for a few minutes and get beamed. They even played music for me.


HTH.

Hey guys,

Thanks so much for the well-wishes, advice and information...I totally appreciate it!:)

So I saw the radiation oncologist today, and she was the nicest doctor ever! She listened to all of my concerns, went through my entire file and even brought up things that I didn't expect to make sure that everything is okay with me.

Anyway, she said that my tumour was completely, microscopically and macroscopically, encapsulated, so it was actually a stage I, not II...She also said that it was only 5cm not 9cm...I think that my surgeon misunderstood the paper work that said, 'the specimen is 9cm.' It was actually referring to my tumour plus my thymus...Anyway, she said that I definately don't need radiation, so whoohoo! I'm so relieved!:D She said that the chances of it coming back are almost zero, but she didn't want to quite say zero.

Anyway, I'm relieved because I don't think that I could handle the radiation...I'm already feeling sick still from the blasted anemia I have and prednisone, so it's good to know that I wont have to worry about radiation-sickness...

Thanks for everything, guys!:)

Nicky

Nicky!!

Terrific News!!!!!!!!!! I'm so darn happy for you!

Sue

Thank you, Sue!:hug:

Yay Nicky,

If I drank I would raise a glass in honour of you not having to have radiation, will a cup of tea do!!

Kate

That is FANTASTIC news Nicky. I'm very happy for you that the tumour was completely encapsulated and you don't need RT.

I'll certainly raise a glass to you and your good health :) . None of this tea stuff for me ;)

Cheers!

Brian.

Thanks, Brian and Kate! I'll raise a cup of orange pekoe tea in one hand, and a moosehead in the other! :)

Nicky:grouphug:

Nicky, that's wonderful news! I'm so happy for you! Take care.;)

Big Hugs,
Pat