Pancoast tumor survivors

bpearson said:

pancoast tumor
Hi Diana, I so hope that you will answer this. My husband--age 56-- has been diagnosed with pancoast tumor in Oct. of 2010. Everything is going against him (horners syndrome, above right lung, tumor was in spine, inoperable). He has been given the "big guns" of high doses of chemo and radiation--- which took his back pain away (thank God!). A month later he went for a check up and couldn't get a CAT or PET due to inflammation of his larnyx and breathing tube--- they had to get very close to that area with radiation. He has the next appt. for Jan. 5, for a CAT and PET and we will be given the results on Jan. 10th. He was regaining his strength and stamina, through minimal exercise, but has always (since diagnosis) felt like he was breathing through a straw and has labored swallowing. Maybe this has improved??? But now the last few days he has had quite harsh pain in his upper chest area--- front and back. Naturally, we are concerned and anxiously awaiting to get the results of his scans. Please communicate with us as we need to hear of success stories. Thank you, Sincerely, Bonnie Pearson ---- bpearson57@gmail.com

bpearson said:

pancoast tumor
Yes Alan, I did mean Oct. 2011... getting my years mixed up. I am sorry about your hardship, but no matter how many "extra" years you get, you always want more. We are new in this fight. We were not told what stage this tumor was in, but we do know that it was measured at 97 cubic centimeters... Steve has suffered since April, 2011 with a very painful upper back, with countless trips to the chiro. That was followed with laryngitis in Sept. for 5 weeks before he went to the Dr. It made the dr. sit up straight when he mentioned, that he didn't know if it was related to his throat problem, but his right eye lid was droopy--- well, of course, you know what that means. A few days later we are regular visitors at a hospital, with radiation (7 weeks, with the "big guns") and chemo (1 week and 1 day at the beginning and then again at the end-- again the "big guns") after we were told that it was inoperable. For 3 full weeks (over Christmas) he had no pain, good appetite, and his stamina and strength was going forward slowly, but steadily. But throughout during and after the treatment he feels like he is breathing through a straw and swallowing is labored, due to the pressure of the tumor on this area and/or the radiation was directed as close to that area as they dared without ruining it. Now, that brings us to today.... the last 5 days he has suffered brand new pain in his upper chest area--- front and back, and both of his arms and hands. This is terrifying to us as the pain had dominated his right body mostly and now it is in both sides. Tomorrow we go for a CAT and PET and will get told the results on Tues. the 10th. Thank you for any tips or/and encouragement you can give us. We hope that you are enjoying a good quality of life. Bonnie

AlanRinHBG said:

Pancoast
Hi Bonnie, That all sounds really familiar. Mine was upper right and involved spine in T1. I know that no 2 cases are alike but these are pretty close if you ask me. I did 35 tomo rads and the "heavy hitter" chemo too. cisplatin and etopocide. after that 7 weeks, I got re-evaluated for surgery. couldn't be done without risking paralasys because of spine and the bone damage. I went to Cyberknife and 6 taxotere treatments. That pretty much did it in. I've been in remission since Jan. 2010. I go for scan in 2 weeks to follow up. I feel confident about staying in remission. There are after effects that still linger. Nueropathy in my right arm is about it though. It's liveable, could have been way worse, right? I know of a few survivors of this who have many more years than me. The surgery to remove a pancoast tumor is pretty brutal and I'm actually happy not to have gone through it. There are lasting effects from that too. Most of what he's feeling now is probably caused by the radiation and will subside over time. my tumor is reduced to scar tissue and is visible on CT. I would just say to be patient, don't expect to recover overnight, treatments are invasive and aggressive and mostly successful. You can ask about post treatment physical therapy. I did and it helped alot. Good luck with the scans , I'm sure there will be big improvements. It's a bumpy ride but it gets better.

bpearson said:

no need
Alan, I looked up both of these words and now have something to bring up with our drs. if they looked puzzled on what to do next. We will rest easier this long weekend, because of you. Bonnie

AlanRinHBG said:

ck
Bonnie, Cyberknife saved my life. It is surgery without the surgery. Taxotere, a second line chemo for me. Let me know what happens. Best wishes from me.

bpearson said:

VERY good day
Hi Alan and all, yesterday Steve got the results from his chemo and his radiation drs. from the CAT and PET scans of the previous week. They both said that the cancer is gone!!! What is left his residual matter (remains of the shunken/dead tumor. The radiation dr. said that he saw a little inflamation there, but thought that it was still from the treatment, so he was not concerned. Lots of tears, but these were from happiness. He will have another CAT in 2 months as part of the follow-up. He has aches and pain, but we could also call them normal "old age" problems. His hands are very sore (maybe arthritis), but also very weak. Now the focus will be to get his strength back. We hope that this brings hope to anyone with that dreaded pancoast tumor. Thank you God! Sincerely, Bonnie and Steve

AlanRinHBG said:

I forgot something.
Steve could ask for something for that inflamation to go away faster. A mild steroid is something that can help. Advair has some in it, I used it and still do to help with COPD and the rest. Also, there is physical therapy post treatment to ask about.

Karenhopeful said:

Horners syndrome
I think I have HOrners syndrome. I only sweat on half of my body. Did your husband have that problem? Has it gone away? I also have the underarm numbness and sore shoulder/back area. I have been feeling better after two chemo. But no one could tell me about sweating on only half of my body. I just found out about it by searching today. I am worried that I may have had an incorrect diagnosis. I had uterine cancer and a needle biops said uterine cancer, however I wonder about this Pancoast tumor. Is it only a primary lung cancer, or is it any cancer in that specific apex area of the lung? How is your husband doing? Alan, how did your scans come out? I hope to hear you are both doing well.