Post Op Chemo

Buzzard

I would like some input on Post Op Chemo...I have an appointment with my surgeon at Vandy Monday, and its for post surgery checkup. My oncologists suggests that I need a regimen of 6 months of post op chemo. I would go in on Monday for 4 hours of chemo then wear a fanny pack for 46 hours then back for 3 ours on Wednesday for a chemo that will make me cold intolerant. This will be every other week for 6 months. My problem with this is that my cancer was isolated with no lymph nodes involved and for some reason the oncologists suggests that there was a node involved and he read the PET Scan to me when I ask him point blank if any nodes were involved he replied no.I passed this on to my surgeon at Vandy and he looked into this for me. I then go to my radiologists for a checkup and he tells me that I shopuld really think about going through with the post op chemo to assure no re occurence and he too said that anyone with nodes involved should do this. I politely informed him that there were no nodes involved. The oncologists changed his notes to reflect this but I feel like im getting the old run around so Monday at my Surgeons appointment I am going to have a sit down with him (he is the only one I trust to make a valid suggestion now) and let him know just exactly is taking place here in my hometown. He is already aware that there were no nodes involved but im not sure if these people here are treating me the way im suppose to be treated(chemo) or not. My oncologists told me that iot was my choice and that I could ask while at Vandy if there were any post op treatment clinical trials I might be interested in. I think im fixing to have me a little house cleaning party starting at the oncologists office...I will take my surgeons advice no matter what because he is the one that has been right on in every aspect of my disease so far and a brilliant surgeon and human being. He knows and cares about what you are going through. Dr Alan Herline at Vandy-Ingram Medical Cancer Institute. The best there is in my opinion.....

chynabear

Welcome to the boards here, but sorry you had to find us.

It sounds as if there is some confusion as to your staging and whether any of your nodes were involved and what you want/should do now...

If it were me, I would first try to get a more definitive (or as close as you can come) answer to your staging and if there was any node involvement or whether the cancer broke through the colon wall at all.

I would request a copy of your scans (CT, PET, PET/CT anything that has been done) directly from the office or hospital that did your scans and get a second opinion from another oncologist... or as many opinions as you need. It might not be a bad idea to get a copy of your chart from your current oncologist, radiologist, etc.. that you have been involved with.

Did the surgeon remove any nodes? If so, how many were removed and were any of them stated to be cancerous? Your "true" "staging" would likely have been done after surgery, so it is wise of you to include the surgeon in your decision, in my opinion.

Next, to my knowledge, it is highly recommended that Stage III (those with node involvement and cancer that broke through colon wall) to do post-op chemo. The regimen you described is exactly the one I completed nearly 4 years ago and I had 1 node positive. I have also heard of others (even from this board) who have forgone chemo after surgery at Stage III and have been just fine.

Stage II, or no node involvement, is controversial as far as I'm concerned as to whether post-op chemo is recommended.

The ACS web site has some decision making tools available to help you decide and people available to talk to if that will help.

You are your own best advocate, so I applaud you for looking into your own health and getting involved. I was so shocked that I just went through the motions and did what I was told I should do. Get as many opinions as you need to make a wise decision, and never look back once that decision is made. Chemo isn't something that should be taken lightly. It serves it's purpose, but not without risks and side effects.

Good luck in your decision and let us know how you do.

JMARIE66

My husband did the Folfox chemo program that you are refering to. He did have 3 positive nodes located right next to the tumor. They took out a total of 17. So, this brought him to stage 3b where Chemo is recommended. There does seem to be some conflicting information on wether stage 2 should or should not do chemo. So, if you had no lymph nodes-stage 2, 1 lymph node stage 3. I know doctors are being allot more aggressive with cancer today~and survival rates are increasing. It seems there is conflicting information as to if there was a positive node or not. Why the misinformation? If no nodes definitely, you do still have a decision of chemo. More and more times stage 2 diagnosis individuals are also choosing to do chemo. I watched my husband do chemo for the past 6 mths~some treatments tolerabe, some not so much. But it was 6 mths out of his life to have many more years of living life to the fullest. Maybe get one more person to look at the PET scan or have a different radiologist read the report to get an extra set of eyes, evaluation.

dixchi

In 2004 I was Stage II, no lymph nodes involved
and I am right now recovering from a liver resection surgery. It can sometimes be in the bloodstream and recur. At the time in 2004 no
chemo was recommended; now I understasnd from
other sources that chemo is being done with STage
II no lymph nodes involved. Believe me, I wish
I had chemo at the outset. Maybe I would not be
going through this now. Stage II has been
controversial for chemo treatment but there are
reports coming in of what has just happened to me. The FOLFOX treatment is not bad and symptoms
are manageable and go away after a while for most
people.

kristasplace

I've always had a hard time understanding why stage I and II are not recommended chemo. I have a friend who was stage I rectal, had her rectum removed, and did not receive chemo. Five years later (almost to her NED date), they found mets in her lungs. I think adjuvant chemo for any stage is a good idea. After all, it is preventative for all of us who are not stage IV.

I think you should have all the facts regardless, but if it were me, i would do the adjuvant no matter what. You don't want to deal with a recurrence, or spread later on.

Many hugs,
Krista

PGLGreg

If any lymph nodes were
If any lymph nodes were found to be cancerous, you're stage 3, if not, you're stage 2. Stage 3 patients always get chemo, I think, and stage 2 patients tend to, also. It might depend on details of the type of cancer. I was stage 2 rectal cancer and was told post-operative chemo ("adjuvant therapy") was optional, but at the same time, my oncologist made it clear he thought I would be foolish not to have chemotherapy. So I had chemo.
--
Greg

Owen9

PGLGreg said:

If any lymph nodes were
If any lymph nodes were found to be cancerous, you're stage 3, if not, you're stage 2. Stage 3 patients always get chemo, I think, and stage 2 patients tend to, also. It might depend on details of the type of cancer. I was stage 2 rectal cancer and was told post-operative chemo ("adjuvant therapy") was optional, but at the same time, my oncologist made it clear he thought I would be foolish not to have chemotherapy. So I had chemo.
--
Greg

Second opinion
I didn't think the chemo recommendation was valid, so I sent all my records to Mayo Clinic Jacksonville and went there for a second opinion.

The oncologist there (who was just wonderful in her direct way of speaking to me and making sure I understood why she was telling me what she was telling me) said they'd be doing exactly the same drill as proposed locally.

If nothing else, it was a confidence-builder.

Tomorrow is infusion 10 of the 12 of FOLFOX6. Not too bad.

Regards, Owen9
Stage 3b March 2008

wolfmn26

To chemo or not to chemo.....
During my surgery, they removed 14 lymphnodes and all came back negative. The doctors still suggested that I go through chemo. Although, the cancer seemed to have not spread, it takes millions of cancer cells to show up on any scans. If a small amount of cells spread and it wasn't noticed on any scans, well, you're right back to where you started. I would suggest going through the chemo just as a precautionary measure. I'm not gonna lie to you, the chemo treatments are rough but I'd rather go through a few treatments and make sure the cancer is completely gone than to not go through it and have the cancer come back.

One of the side effects is an intolerence to cold. I couldn't touch anything cold, go out in the cold (I went through chemo in the middle of a Michigan winter), or drink anything cold (get use to hot chocolate).

Bottom line, better be safe than sorry...

Jim