2nd opinion no good options

crazylady

Hi Everyone,

I went for a 2nd opinion yesterday. I have 2 small spots in my left lung which shrunk with chemo, but the chemo made me so sick I ended up in the hospital.

The oncologist basically said that he thinks I should take a break from chemo to regain strength. He doesn't have any idea how long that will take and said that it's possible it might never happen. He believes that doing chemo now would do more harm than good and actually shorten my life. There was a lot of discussion about it being in God's hands which I have a really hard time with. I have done the most aggressive treatment since I was diagnosed in March 2004. I like to be in control and doing nothing seems like I'm inviting the cancer to take over.

The doctor is world known and at a major cancer center.

I'm really frustrated!!

Take care,
Jamie

CherylHutch

No good options
Oh, Jamie... I'm so sorry you've had one of those days I don't really know what to say since I am just starting on my own journey of the cancer having spread to a few spots on my lung. In my case, like yours, the spots are small. We have not done any chemo on them since we have found them, but it sounds like when you did do chemo, the spots did shrink so that does indicate they reacted to the chemo, hence they are cancer.

You have said that they both are on your left lung and that they are small... and that there are only 2 of them. Did either oncologist say why they wouldn't go after them surgically? I don't know enough to know when/why they would go after them surgically and when they would decide that is not appropriate.

The other thing which I'm really interested in right now is this RFA (Radiofrequency Abalation)... and only because we are going to see if this works on me. I understand that not all radiologists can do this and that it is usually done with an "interventional radiologist" and possibly a surgeon, so one would have to find someone near you that would specialize in this. This is where they go in with a long needle (like when they do a lung biopsy), using a CAT scanner for guidance, and they burn the tumours. I'm not sure where you live, and I'm really not familiar with the American health care system, but would this not be something your oncologist could look into for you? Up here, my oncologist has found (well, they all know each other) an interventional radiologist who works out of a different hospital than the one she is affiliated with, and has sent my PET/CAT scans to him for review... so we are waiting to see when I will be getting a consult appt. with him if he feels he can ablate these spots on my lung(s). I have 6-7 spots, on both lungs... so if this is possible, I'm not sure why this wasn't a possible recommendation for you as well.

I know I don't know your history, or your case, and I'm certainly not a doctor so can't give any advice... and right now you must be feeling very down and depressed. But give it the weekend and maybe we can start tossing ideas around of what others have had done in similar situations to yours... write them down, and then take that list to the oncologist and ask him WHY you can't have any of these options since the chemo doesn't seem to agree with you.

Hugggggggs,

Cheryl

Kanort

I'm Sorry!
Dear Jamie,

I am so sorry your appointment did not go as we had hoped, and I certainly understand your frustration. I am praying that your body will gain strength during this chemo break and you will be able to resume a plan of attack soon.

I'm thinking of you.

Hugs,

Kay

crazylady

CherylHutch said:

No good options
Oh, Jamie... I'm so sorry you've had one of those days I don't really know what to say since I am just starting on my own journey of the cancer having spread to a few spots on my lung. In my case, like yours, the spots are small. We have not done any chemo on them since we have found them, but it sounds like when you did do chemo, the spots did shrink so that does indicate they reacted to the chemo, hence they are cancer.

You have said that they both are on your left lung and that they are small... and that there are only 2 of them. Did either oncologist say why they wouldn't go after them surgically? I don't know enough to know when/why they would go after them surgically and when they would decide that is not appropriate.

The other thing which I'm really interested in right now is this RFA (Radiofrequency Abalation)... and only because we are going to see if this works on me. I understand that not all radiologists can do this and that it is usually done with an "interventional radiologist" and possibly a surgeon, so one would have to find someone near you that would specialize in this. This is where they go in with a long needle (like when they do a lung biopsy), using a CAT scanner for guidance, and they burn the tumours. I'm not sure where you live, and I'm really not familiar with the American health care system, but would this not be something your oncologist could look into for you? Up here, my oncologist has found (well, they all know each other) an interventional radiologist who works out of a different hospital than the one she is affiliated with, and has sent my PET/CAT scans to him for review... so we are waiting to see when I will be getting a consult appt. with him if he feels he can ablate these spots on my lung(s). I have 6-7 spots, on both lungs... so if this is possible, I'm not sure why this wasn't a possible recommendation for you as well.

I know I don't know your history, or your case, and I'm certainly not a doctor so can't give any advice... and right now you must be feeling very down and depressed. But give it the weekend and maybe we can start tossing ideas around of what others have had done in similar situations to yours... write them down, and then take that list to the oncologist and ask him WHY you can't have any of these options since the chemo doesn't seem to agree with you.

Hugggggggs,

Cheryl

options
Thanks for your reply Cheryl. I checked into RFA and was told that I am not a candidate because one of the spots is in a difficult place to reach and too close to an artery. I hope you have better luck and you are able to have RFA.

I was told by both oncologists that they do not think surgery is a good option at this time because my body is weak and needs to rest. I have previously had lung surgery on each lung.

My history is dx March 2004, rectal cancer, no lynph node involvement, no spread to other organs. chemo/rad for 5.5 weeks, surgery with permanent colostomy followed by 6 months of Xeloda. NED until Oct. 2005, mets in right lung. Folfox, 6 months, NED until 3 months later back in right lung. Surgery Sept. 2006 followed by Folfox plus Avastin. NED until June 2007. Mets in left lung. Surgery July 2007. Chemo for 6 months, camptosar, xeloda, avastin. NED until July 2008. 3 chemo sessions, same drugs which landed me in the hospital last month. I am still recovering. Some of these dates are a little off. After I come off chemo it usually shows up on my next scan, within 3 months.

Thank You for your suggestions and good luck with treatment. Have a good weekend!

Jamie

I see my regular oncologist on Monday, but I don't think he really knows what to do at this point since he sent me for the 2nd opinion.

tootsie1

Sorry
I'm sorry you didn't get an answer that would help you at this time. We'll have to pray that your body will get stronger, so you can pursue another avenue for recovery.

*hugs*
Gail

Moesimo

sending hugs
Jamie,

I am sending hugs and prayers for you. Hang in there, maybe if you give your body a rest, you can find a chemo that will help.

I wish I had a better suggestion, just remember we are thinking of you.

Maureen

taraHK

Discouraging
Dear Jamie,

I am sorry the second opinion meeting did not give you the possibilities you were hoping for. I am sure this is discouraging and, as you say, very frustrating.

I'm like you: I like to feel like I'm in contol, I like to be doing something rather than nothing, and I lean towards doing being more aggressive rather than less aggressive.

But it does sound as though a break from chemo (even a short one) might be what your body needs right now -- sounds like you need to rebuild some strength. That doesn't necessarily mean a break forever, right? Just for now....

My heart is going out to you, my friend....

Tara

Monicaemilia

Jamie: I agree that a break
Jamie: I agree that a break from chemo sounds like a good plan right now. But I think that as soon as you feel better and your body can handle it (and only YOU will know that)surgery should still be an option to pursue. Good luck and God bless. Monica

Limey

Jamieed on and tis is the first ost i read.
Hi Jamie, it has been a long time since i signed on and your the first post i read. I am so sorry to ear news like that. Bigs Hugs from Minnesota. I will attempt to post here maybe some info may help.
stay strong and never ever give up

dave03

Alternative Medicine
Hi, Logged in years ago and haven't been back until now. Been looking around and don't seem to hear anyone talk about a Natural approach to a problem when Alopathic Medicine throws up their hands and says we can't do any more, or lets wait and see.I had a serious bout with the Big C in 2003 and they almost killed me with chemo.I read alot and did befor the cancer. I just thought if we looked after ouselves better in the first place maybe we could do something for our selves. It's weird that we wait to get sick and then scramble to get rid of what we have come up with; Don't you think? I have lost friends since my encounter with cancer and none (including their family) would listen to any thing I offered. But, they sure thought their Doctors are God. Hate to inform all of you, they aren't even close. Some, however are very good at what they do. Jamie,there nare things we can do. Including sharing with each other what we learn. P.S. you doctor will not be interested in this conversation.

betina61

Jamie, I'm sorry to hear
Jamie, I'm sorry to hear that the appoitment didn't go the way you were hoping for, but the Dr. is telling you to take a break from chemo,forget the second part that he said it could be forever,and visualize yourself going back to your chemo appoitments,and in the future celebrating good news with us,Im hoping for that from the bottom of my heart,and will be praying for it.

hopefulone

Stay Positive and Persistant
I'm so sorry you didn't hear better news and I know you said you went to a major cancer center, but I'd still go someplace else. Bigger is not always better . I'd really investigate the RFA option aggressively especially if they shrunk. Good Luck and God Bless. Keep us posted.
Diane