Good or Bad.

pepebcn

I just came from my two week control, CEA has dropped again to 3.5 last scans ,some of you will remember , where not showing disease that's the good part ! the one which keeps me worried is that as things are going so good onc, is insisting more and more in not operate and do some other less aggressive treatment , i'm really confused as the only way to curate it ,as per I know, is surgery !...well despite this can't complain at all!.
Hugs!

Lori-S

Hey Pepe
Good for the CEA and clear scans. If scans are showing clear then are the doctors maybe thinking that it's best not to do surgery because they might not be able to keep what they want? If they can't find it how can they take it out? Or is this another place that they can see?

KathiM

Surgery is not always the option....
I did so well with my pre-surgical chemo/rads, that my 2 inch tumor completely disappeared! There was great discussion as to whether we should proceed with the surgery, since it was gone....

I think you should listen to your onc, but then ask to speak to a gastric surgeon (or yours, if you already have one) for a second opinion. And maybe another onc. Doesn't hurt.

I agree that surgery many times is the answer...but it also is fairly invasive, and takes some time to recover from....

BTW, I am DANCING for you, dearheart, that things are going so WELL!!!!!

Hugs, Kathi

pete43lost_at_sea

KathiM said:

Surgery is not always the option....
I did so well with my pre-surgical chemo/rads, that my 2 inch tumor completely disappeared! There was great discussion as to whether we should proceed with the surgery, since it was gone....

I think you should listen to your onc, but then ask to speak to a gastric surgeon (or yours, if you already have one) for a second opinion. And maybe another onc. Doesn't hurt.

I agree that surgery many times is the answer...but it also is fairly invasive, and takes some time to recover from....

BTW, I am DANCING for you, dearheart, that things are going so WELL!!!!!

Hugs, Kathi

Surgeon or ONC who is the boss ? You are!
I also did really well with pre surgery chemo/rads that in a pre op pet they found no active disease. My rad ONC said it was an excellent result. MY surgeon shared with me a similiar story when he was operating back in the UK. His patient had very clear scans and at the multi disciplary team review meeting his peers argued not to go ahead based on scan results. He disagreed, he was actually out voted by his peers, but had the final say. did the op and the analysis showed many active cancer cells in the tumour he removed. He looked as pleased as punch when telling me this story and he felt vindicated I felt "I told you so" . Its hard to swim against the tide.

I went ahead with my op but found my surgeons story meaningful. He also mentioned some schools of thought in europe where if you have a great response to chemo/rad they wait 3 to 4 months and just monitor and sometimes defer operating. I don't have copies of the clinical trials this is based on.

Every doctor will probably give a different opinion, no absolutes. Goodluck making a tough decision. Ultimately I had faith in my surgeon and said a few prayers. I think emotionally I could not have left the cancer inside of me I just wanted the dam cancer out and chopped up in little pieces in a jar preservatives. Its strangely comforting to think its sitting in a lab somewhere and not inside me. No more free rides for that little sucker. Mind you it was quiet large.

After a few opinions ONCs and SURGEONS hopefully you'll know whats right for you. Ask the SURGEONS about sideeffects, complications etc etc. I found having my wife and aunty at these key doctors meetings invaluable. Even though the final decision is yours make sure you ask heaps of insightful questions. I found it was also good to have all of wifes many questions answered by the surgeons directly. I went overboard but did have consultations with four colorectal surgeons before selecting a hospital team to do the whole deal with. By the end of all these meetings I was pretty informed I thought. But nothing however can prepare you for post op life, or waking up in intensive care. The surgeons don't explain NG tubes and the wicked highs and crazy dreams you get from morphine and the challenges of recovery.

KathiM

pete43lost_at_sea said:

Surgeon or ONC who is the boss ? You are!
I also did really well with pre surgery chemo/rads that in a pre op pet they found no active disease. My rad ONC said it was an excellent result. MY surgeon shared with me a similiar story when he was operating back in the UK. His patient had very clear scans and at the multi disciplary team review meeting his peers argued not to go ahead based on scan results. He disagreed, he was actually out voted by his peers, but had the final say. did the op and the analysis showed many active cancer cells in the tumour he removed. He looked as pleased as punch when telling me this story and he felt vindicated I felt "I told you so" . Its hard to swim against the tide.

I went ahead with my op but found my surgeons story meaningful. He also mentioned some schools of thought in europe where if you have a great response to chemo/rad they wait 3 to 4 months and just monitor and sometimes defer operating. I don't have copies of the clinical trials this is based on.

Every doctor will probably give a different opinion, no absolutes. Goodluck making a tough decision. Ultimately I had faith in my surgeon and said a few prayers. I think emotionally I could not have left the cancer inside of me I just wanted the dam cancer out and chopped up in little pieces in a jar preservatives. Its strangely comforting to think its sitting in a lab somewhere and not inside me. No more free rides for that little sucker. Mind you it was quiet large.

After a few opinions ONCs and SURGEONS hopefully you'll know whats right for you. Ask the SURGEONS about sideeffects, complications etc etc. I found having my wife and aunty at these key doctors meetings invaluable. Even though the final decision is yours make sure you ask heaps of insightful questions. I found it was also good to have all of wifes many questions answered by the surgeons directly. I went overboard but did have consultations with four colorectal surgeons before selecting a hospital team to do the whole deal with. By the end of all these meetings I was pretty informed I thought. But nothing however can prepare you for post op life, or waking up in intensive care. The surgeons don't explain NG tubes and the wicked highs and crazy dreams you get from morphine and the challenges of recovery.

My surgeon did a 'mini' tumor board...
at a conference he was at....

4 days before my scheduled surgery, I was told the decision was mine. I am NOT a gambler at heart, so I weighed the lasting effects of surgery against my fear of reoccurance...and even asked my doctor "If I was your wife, what would you tell me?".

I chose surgery. He removed my rectum and sigmoid colon. Made a new storage pouch out of my descending colon. I still have changes to my lifestyle, but will, 6 years later, still support my decision. Because it was mine....BUT none of the tissue removed had any cancer left in it....

Thanks for the sharing, Pete, all I was saying was the same to Pepe....you need to own the decision...because it's a bit rough going when you mess with the bowel...

Hugs, Kathi

lisa42

KathiM said:

My surgeon did a 'mini' tumor board...
at a conference he was at....

4 days before my scheduled surgery, I was told the decision was mine. I am NOT a gambler at heart, so I weighed the lasting effects of surgery against my fear of reoccurance...and even asked my doctor "If I was your wife, what would you tell me?".

I chose surgery. He removed my rectum and sigmoid colon. Made a new storage pouch out of my descending colon. I still have changes to my lifestyle, but will, 6 years later, still support my decision. Because it was mine....BUT none of the tissue removed had any cancer left in it....

Thanks for the sharing, Pete, all I was saying was the same to Pepe....you need to own the decision...because it's a bit rough going when you mess with the bowel...

Hugs, Kathi

surgery or not surgery?
Hi,

Just wanted to share my story... I also had an excellent response to chemo/radiation on my rectal tumor and it completely disappeared. My colorectal surgeon had initially told me when I asked, that she would still want to do the resection even if I had a "complete response" (tumor disappearing). When the tumor actually did disappear and a follow up colonoscopy and biopsy confirmed that there was no sign left of the tumor and no cancer cells were found in the area at all, I began to think "if the tumor disappeared, then why should I have to go through the surgery and possibly even face a permanent colostomy?" (the tumor was quite low and it was then unknown whether or not the surgeon could successfully perform the "sphincter saving" surgery). I was feeling desperate at that time to avoid the surgery & conveyed those feelings to my surgeon (especially because the cancer "had already spread to other organs anyhow", as I was stage IV at diagnosis).

Well, now fast forward to the present time (almost 3 yrs later) and I am now facing the fact that I've had a recurrence with the rectal nodule regrowing in the same location. If I had been a stage I, II, or III, I would have gone forward with the resection at the time even with the tumor disappearing just to greatly reduce my chances of a recurrence. But, since I was stage IV and getting the resection would not have done anything to prevent the cancer from spreading- since it had already spread- I just didn't see the reason of putting myself through a resection/ileostomy/ or permanent colostomy.
Do I regret my decision of not having it done back then? Even with facing the recurrence and needing an eventual transanal excision of the tumor, I can't say that I wish I had done things differently. Even with having the resection, there is still a chance of having a recurrence, but I'm sure the chances of a recurrence are higher without having the surgery- that only makes sense.

As said above by someone else... YOU are in charge of your own body! If you are uncomfortable with your doctor not wanting to go forward with the surgery, then speak out or even insist on it, if that's what it takes!

Glad you're doing so well, by the way!!!!!!!!!!!

Hugs,
Lisa

Lovekitties

Need another opinion
Very glad to hear that all is looking good.

As you determine what actions to take, remember that an onc will see the world differently than a surgeon.

My advice is to get a surgeon's perspective too.

Bottom line is your body...your choice.

Hope some good info comes along to help you make best possible choice.

Hugs,

Marie

pepebcn

Lovekitties said:

Need another opinion
Very glad to hear that all is looking good.

As you determine what actions to take, remember that an onc will see the world differently than a surgeon.

My advice is to get a surgeon's perspective too.

Bottom line is your body...your choice.

Hope some good info comes along to help you make best possible choice.

Hugs,

Marie

Thank you mates!
Surgeon still wants to operate but........ the problem is that he is my wife,s cousin hahahahaha, well he is considered one of the best liver surgeons in the world ,and probably the best in Europe, he did the first transplant with alive donor in Europe and the second in the world,so his CV is excellent but you know surgeons, they always want to operate, hahaha,so to whom do l have to listen ?Well any case I consider my self fortunate having the possibility to choose by my self! As know surgery is the goal for many of us.
Cheers mates!