20+ Year Survivor Would Like to Hear From Other Long Term Survivors

If you haven't already, I would suggest you get Pulmonary Function Tests (PFTs) to see if you have intrinsic lung disease or is it coming from your heart. We all have some degree of fibrosis in the hilium (area where the vessels and airways enter the lungs from the mediastinum). This is thanks to the RT. Depending on how many Gy you received and how extensive your lung filed blocks were will determine how much fibrosis you have. 

Don't harp on what you wish you had or wanted. Think about what you have and why you didn't become a death statistic... and enjoy whatever life you do have! I see a lot of cancer deaths and thank God it hasn't been me yet..and say if it were tomorrow, I got an extra 35 years that I didn't deserve!

If I may, you have 35yrs. that you DO deserve!

Last year I did a PFT--volume is almost 100%  (thanks to all that aerobic work I have done!)  but the oxygen uptake is poor...Question, do you have to use any inhaler?  He said I might have exercise induced asthma and gave me an inhaler, but I really am not sure if it helps.  I am going back in July. 

Luckily, the Texas Children's Hosp here in Houston has a Long Term Survivor of Childhood Cancer Clinic that I have been accepted into and will go in late Aug.  They spend an entire day with you!!!!

You are right to chide me on my thinking--attitude is everyting!

Julie

No inhalers for me, my PFTs are in the 75% of predicted. Some of my shortness of breath is due to my Aortic Stenosis. Not ready for a valve yet, but I'm not going to edit till my ventricle is a bag of poop either. Cardiologists have a habit of "medically treating" a surgical disease for too long of a period. Nobody wants surgery, but if it's inevitable you might as well do it when you still have a somewhat healthy heart. Here in AZ, Mayo had a Cancer Survivor Clinic for monitoring. Fortunately I work here at Mayo so it's close by. Being in the medical field, I do a great job of keeping on top if everything, because like in the financial arena, the only one who looks out for money is you! Same in the medical field...you have to be your own advocate! Good luck, Mike

Funny you say that....my pulmonary dr thought it was heart related as well.  I had an echo done last summer and he said no aortic stenosis but I wonder if it could have been missed.  And just how can you "medially treat" aortic stenosis?  Hmmm...oh well.  I am up for my nuclear stress test and an echo again in early July...I have a new cariologist since my last one retired, and I imagine that when he looks at the results he will not even remember who I am....so frustrating....

Thanks, Julie

i am surprised to hear you say that you have connected with a survivor program, and haven't run over there immediately.  To hear you say that you have great MD's, but "..they aren't fully on board.." concerns me.  In my opinion, to really get the assistance and results you desire demands that they all talk with you, and about you, and know your history and goals.

I have had most of the same post radiation issues that you are dealing with, and they were all anticipated and explained by my MD team.

All of my MD's here a Dana Farber meet and talk about me.  I often see them, and talk with them, in the cafeteria and hallways.  They discuss my case and issues together, and I can see them and hear them doing it.  I can see them working together as a team, and i can feel the results.  Joining the survivors program here at DFCI has lifted an enormous burden off of me and my wife.  I guess I just expect every survivors program to work the same way.

Aortic Stenosis is medically treated with Bets Blockers to reduce the heart rate and blood pressure, Aspirin, Statin to reduce inflammation and eventual replacement of the valve!

If it turns out they "missed" aortic stenosis, switch doctors quickly, cause I can teach a housekeeper here at the hospital to see AS in 5 minutes!

I just found out about the program and I go the first appt available!!!!!  Can' wait!

The great MD ANderson cancer center here in town will only follow their own patients!

Julie

Your heart knowledge is awesome,...will do those tests in july thanks to you.