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Posted

hi I had stage 3a pancoast tumor that was found last new years eve and I think I am having a nervous breakdown right now because everything feels exactly the same. I had concurrent chemo and radiation for a month then had upper right lobe and 2 ribs removed. all my lymph nodes came back clear, but I still have pain all the time and I dont know what to do. dr says its musculoskeletal - I know they did catscans and mri's but I'm afraid it's somewhere else that they didn't check. I can't stop crying, I'm scared and everyone says I should be happy I'm alive. I am loosing it!

Posted

Liz,

Welcome! Sorry we all have to meet this way. You will find there is a lot of support here. You have come to the right place. Take a deep breath and we'll work on this together. This is a an awful disease and the unknown is frightening. You said you have had CT and MRI scans. Have you had a PET scan? I hope you have confidence in your doctors. You have had surgery and sounds like you have healed from that. Are you in remission? What have the doctors told you? Have you had chemo or radiation? We need a little more information, then we will be able to share our experiences with you.

You are a survivor and must think positive. Hang in there! Please don't be afraid, we are here to help as much as we can... Prayers for you and your family.

Peace and God Bless...

Karen

Posted

Liz, welcome. May I invite you to join the Pancoast Tumor club. I also had a tumor in the apex of my right lung. First symptoms were shoulder and chest pain. I had Cisplatin, VP 16 and concurrent radiation. I also was diagnosed in December but am happy to say it was in 1997! After surgery in Feb 98 I had another round of the above chemo and other than back pain I have been fine since. There are at least 6 of us with a pancoast tumor here. Any questions feel free to discuss. Again welcome. Donna G

Posted

Liz, Welcome aboard.

Pancoast tumors suck. No doubt about it.

I had a 14 x 9 x ? pancoast tumor in the apex of my left lung, had grown under my scapula and up into my neck.

I had cisplatin/vp16 2 x 6 days at either end of 25 days radiation, then 7 weeks later surgery ( the tumor had shrunk considerably, and was dead on removal) and two more rounds of chemo.

I lost my collarbone to the surgery. The tumor "ate" 5 ribs. Now I have Goretex. The whole intact shrunken tumor when removed was 13#.

I have chronic shoulder pain. Last year I had a new pain in my back, they did a quick MRI and found.... nothing. Pain was from pressure on nerves, due to mild scoliosis from being lopsided I guess. They added a med for nerve pain.

Please don't flip out. You're due right about now for another set of scans, aren't you? Talk to your doctor, all new pain should be evaluated promptly. But don't think right away that you're dealing with the whole tumor again. Very unlikely. But talk to your doctor and get the reassurance you need.

Donna is right, pancoast is a different set of problems. Feel free to pm me if you want to talk some more. Please, stop flipping out, though. Take a deep breath. Be glad you are alive!

XOXOX

MaryAnn

Posted

Liz,

Whoa girl! Easy now. Ever since I got my diagnosis every pain or headache I've had I've had to stop and remind myself that there are thousands of reasons for pain and the vast majority have nothing to do with cancer. If it's time for another round of tests, then do so.

I would suspect that, since this is the anniversery of your diagnosis, stress has a lot to do with what your feeling right now. All too often we don't just remember a traumatic experience, we re-live it. Now I'm NOT saying it's "all in your head", but I AM saying to check things out.

Dean

Guest bucky_a
Posted

Hi Liz, i really understand you!!!. Be happy you are alive,. And we should do that!!!, We are survivers, even if I think that I have cancer again if i have a headache. Is really hard but we need to be positive. Sometimes i get mad with my family because they thik all this is over. But the I think they are right. They think positive and that is what we shoul do. Why call this nasty thing again?

I go crazy like you, sorry.

enjoy life, and don't think!!!!!

bucky

Posted

Liz, The pain you are having could be from the surgeon having to cut through and take out two ribs. My husband has had pain in the rib area since he had 3 taken out in 9/11/02. I figure it is nerve pain for I have heard so many talk about pain in the rib areas, under the breast area and shoulder areas. Go for your checkup and talk with the drs.

The stress we put ourselves through is horrible but one cannot help doing that once cancer entered our lives.

Posted

Liz,

Sorry that you are even having to go through with this...no one deserves cancer....especially lung cancer!

Remaining positive is always a plus, but often MUCH easier to say than to do. I do not have cancer, my husband does, but I know that even I cry and get worried over every "little" change, ache, or pain that he has. I don't let him see me cry, but none the less, I do. I pray, try to stay as upbeat as possible for him and pray for that miracle and a cure!

You may also want to talk to your physician about an antidepressant. It would not do any harm, and might be able to take the edge off where you could relax and enjoy life, and not be in a constant state of crying, sad and worried.

Hope 2004 is a MUCH better year for you!

Prayers for peace, strength and courage for you.

Lynne

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