Betty1743 Posted July 25, 2004 Share Posted July 25, 2004 Hi, My name is Betty and I had two lobes removed in my right lung one year ago. They thought they would only have to remove one because the tumor was high up in the right lobe according to the pet scan and cat scan and it was not quite 2 cent. The pet scan didn't even confirm cancer but when they went in it was growing down into the second lobe plus there was cancer in three out of seven lymp nodes. I was not prepared for this surgery at all and it's only now that I'm getting more of my questions ansered by nice people like you. They wanted me to go to the oncologist as soon as I went home but I was back in the hospital with the rest of the lung collapsed. I had to have another chest tube put in and spent another week in the hospital. By the time I got to the oncologist I was, according to the oncologist not a candidate for chemo and with all the gorey stories he told me about it, I wouldn't have taken it anyway. I went up to the head oncologist at Dana Farber in Boston for a second opinion and as far as he was concered I was free of cancer at that point and he said if it came back I could have chemo then. I forgot to mention I'm a 67 year old women who's mother lived to 96 and all aunts and uncles lived till at least 80. As I said it's been a long year and very slow to get back on my feet. I'm still on oxygen and probably will be for the rest of my life. I'm still not driving and I'm due for a pet scan in october. What I'd like to know from any of you out there that have had a similar experience if the cancer came back and how you handled it. I'd really appreciate any information I could get. When I asked what stage I was before I left the hospital, I was told by the surgeon a 1B or 2A so what do make of that. I've read letters from people that have had stage 3 and 4 cancers so they were being treated with chemo and radiation and honestly alot of them seem to be doing alot better than I. Maybe it was the surgery that took so much out of me. Again any info would be greatly appreciated. My most humbly thanks to all of you and my prayers will go out for you to Betty Quote Link to comment Share on other sites More sharing options...
Don Wood Posted July 25, 2004 Share Posted July 25, 2004 Welcome, Betty, and thanks for logging in and telling your story. If I understand the staging correctly, if cancer was found in the lymph nodes, you would be at least a Stage III. There are long term survivors in all stages, so take heart and hold on to hope. Keep us posted and let us know how we maky help. Don Quote Link to comment Share on other sites More sharing options...
Hebbie Posted July 25, 2004 Share Posted July 25, 2004 I believe it the positive nodes are found WITHIN the lobe of the lung, it's stage II.....if found outside the lung, in the mediastinum area, it's stage III. That being said, a lobectomy is a HUGE surgery that takes a long time to recover from. I recall my surgeon saying it would take a year to gain back all of my strength and energy. It has now been close to a year and a half since surgery and I still have numbness and tenderness in the area. Everyone recovers at a different pace....just continue to treat yourself well each day and I pray that your surgery provided your cure. Take care, Heather Quote Link to comment Share on other sites More sharing options...
Nushka Posted July 25, 2004 Share Posted July 25, 2004 Betty, From what I understand, Don is right about the staging. I don't know why they won't do chemo on you unless you have other health problems that chemo might complicate. Most of us with any lymph node involvment have had radiation and chemo. You might want to ask why, just for your satisfaction. That said, welcome to the board. We are a family here and care alot about each other. If we can help you just let us know. Nina Quote Link to comment Share on other sites More sharing options...
brm1949 Posted July 25, 2004 Share Posted July 25, 2004 I too am wondering why they would not recommend chemo and radiation unless they really feel that they got it all. The chemo and radiation would kill most other tiny cancer cells floating around. I had both chemo and radiation and the horror stories were worse for me than the actual side effects. I would do it over again knowing what this disease will do. Sorry you have found us but glad you did. We offer plenty of support and info. Let us know why they choose not to use chemo and rad. Quote Link to comment Share on other sites More sharing options...
ljdub Posted July 25, 2004 Share Posted July 25, 2004 Hi there, your story sounds similar to mine in that we went into surgery expecting stage 1, just the lower right lobe, but there was a lymph node sitting right on the middle lobe that looked suspicious so the surgeon took the middle lobe as well. So they staged me a 2A. They initially didn't think they'd recommend chemo or radiation, but did suggest I might be interested in a clinical trial of Iressa, which they are studying for effects on earlier stage lc. Ordered a PET scan to see what else might show up. As it turned out, a lymph node in the hilar area lit up and there was another in the mediastinum that was "inconclusive", so that meant I went to stage 3A. They then said I definitely needed chemo and radiation, which I am now 2/3 done with. I would definitely question them about this...are there other health conditions which might make it tougher for you to handle the chemo/rad? I myself haven't needed any oxygen treatment at all and I think you said you did, so maybe there is something else going on that makes them advise against it. I'd certainly ASK though! Sending prayers to you Quote Link to comment Share on other sites More sharing options...
Snowflake Posted July 26, 2004 Share Posted July 26, 2004 Welcome, Betty. I second Heather on the staging, prior to surgery I was "guesstimated" as Stage I, possibly Stage II (this on size of tumor)... Lymph nodes were removed during surgery and three tested positive - solid Stage II when the cancer is more than the tumor. First visit to the oncologist was like a kick in the stomach, I THOUGHT it was II at most, it was IIIa. I know there are some early stagers on here (I and II) that have done chemo AND radiation. My oncologist said that the benefits of chemo did not outweigh the side effects and he didn't recommend it. He was okay with radiation because it isn't as intrusive. My second opinion was at MD Anderson - they didn't suggested chemo NOR radiation in my case... I think the chemo question depends on your doctor, not everyone here is doing the exact same treatments... Heather and I are both IIIa patients - she did chemo and radiation, I did radiation and a trial of Iressa (for suppressive therapy). If you are not happy with answers you are receiving from your medical community, go for a third opinion - and ask WHY you aren't a candidate.... Take care, Becky Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted July 26, 2004 Share Posted July 26, 2004 Welcome Betty, I found surgery to be a long haul to recovery from as well. Good luck on feeling better soonest. I second what Becky said, find an oncologist who will explain WHY you aren't a candidate for chemotherapy, and if you feel you need the chemo or would like to be more aggressive in treatment to prevent a recurrence, then keep after them. Somewhere is an assertive oncologist who will help you fight a possibility of recurrence. That said, remember there are no guarantees. Some people never have recurrences with no treatment post surgery, and some have recurrences after chemo and radiation. Not an exact science. Welcome to the family, this is a loving caring bunch of nice people. Keep us posted. XOXOXOXOX Prayers, always MaryAnn Quote Link to comment Share on other sites More sharing options...
Fay A. Posted July 26, 2004 Share Posted July 26, 2004 Hi, Betty, and Welcome. Recovering from thoracic surgery is a long term process. It has been over a year since my third thoracotomy, and I still have some residual pain. I've been told that this is normal, and that it may never go away completely. My personal take on it is that considering the alternative I can deal with the residual pain. I do so like being alive. The hard part of a situation like this is knowing when the pain is a "normal" part of the surgery and recovery, and when its something else. So I take the position that if it hurts, and the answers I have for why it is doing so don't seem right to me, then I keep pushing until I have answers that DO make sense. That includes changing doctors if need be. Wishing you well... Quote Link to comment Share on other sites More sharing options...
SJAS Posted July 29, 2004 Share Posted July 29, 2004 Hi Betty, I don't have much info for you since my husband was originally dx Stage IV. But I'd have to say that if you have nagging doubts about what you're hearing, look into it further. Good luck! Quote Link to comment Share on other sites More sharing options...
GBBailey Posted July 29, 2004 Share Posted July 29, 2004 Hi Betty, Although my case was not like yours, please remember that no two cases are alike, stages may be but you yourself are diffrent from me or anyone reading this and we all heal at difrent rates. Don't give up sometimes it takes a long time to bounce back, but think possitivly, don't give up and pray. God Is With You, Greg Quote Link to comment Share on other sites More sharing options...
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