surgery and adjuvant chemo

ccartwri · July 2005

Hi everyone. I appreciate all the replies to my posting yesterday. What a wonderful support group. I will be having surgery in 6-8 weeks to remove the rectal tumor and am receiving 5 1/2 weeks of chemoradiation first. It is low lying so I may end up with a perm colostomy or a temp ileostomy.
How long were most people out from work after the surgery???
And could you work during the chemo therapy after surgery???
Anyone had FOLFOX?
How does the 48hr infustion every 2 wks work? ARe you at the hospital for two days?

Am also in the process of final decision on the surgeon. One I like and trust more but she is trained at the Cleveland Clinic and they are very conservative but I stand more of a chance of a perm colostomy with her because of the being conservative. The other is a great surgeon but he is an onco surgeon who does abdominal surgeries. Not just colo rectal like the previous one I discussed. I think his surgical skills and confidence are high but I worry that not doing much rectal surgery may lead him to do a temp ileostomy or no bag, as he is not as conservative, but I am in fear of not getting clean margins then and having tumor cells left behind. Any advice???
Thanks!

taraHK · July 2005

My treatment was very similar to yours: 5.5 weeks of chemoradiation, 6 week rest break, surgery, then chemo (starting one month after surgery).

Returning to work after surgery depends a lot on the type of job you have. I think I returned after one month, but I have a very flexible job in terms of hours.

Again, there is a lot of variability in terms of working while on chemo. Some people work right through, others need to take time off.

After my surgery, I had 5FU and leucovorin for 4 months (plus the chemo with the presurgical radiation). But I am now on FOLFOX (I had a recurrence recently - 2 years after my original surgery). Quite a few people on this board have had or are currently on FOLFOX. I am just about to start my 3rd cycle -- out of 12.

For me, I have to stay at the hospital for the 48 hrs. But, I understand many people in the States (and elsewhere? I am living overseas) get a "fanny pack" (sorry -- forgot the proper name for this) so they can be at home for part of the time. My doctors are very conservative, in terms of wanting to keep an eye on me. I also live 5 min from the hospital, which helps (altho I hate having to stay in hospital!). So far I am feeling pretty good re the FOLFOX. Some nausea, some fatigue. I haven't had the pins and needles or need to avoid cold drinks/foods that is commonly associated with the oxaliplatin -- but that could come later. The effects of chemo are often cumulative (that is, you feel lousier with the later cycles).

You are facing a tough decision regarding surgeon. I have to say my inclination is towards someone with expertise in colorectal surgery. "Volume" (number of surgeries like yours performed) can be an important prognostic factor. I know nobody wants a colostomy, but I urge you not to let that influence your decision too much. These days, I think every decent colorectal surgeon WANTS to avoid a permanent colostomy. If you end up with one (as I did), it's because they felt they couldn't get adequate margins without it -- and that is a good thing. There are other factors in chosing a surgeon -- for me, important factors were: do they give me time for questions and discussion, are they open to challenging questions, are they open and honest with me, are they uptodate in terms of research in the field.

Best of luck with your decision.
Tara

nanuk · July 2005

my dx and tx was the same as yours-except for pre-chemo-my surgeon did an exploratory anal surgery prior to the meso-rectal excision w/colostomy to determine if the sphincter (sp?) could be saved-it couldn't. He go clear margins, but i had a recurrence anyway-can't predict those microscopic buggars..2nd time around I did Folfox 6-(4-6 hr infusion, then went home with the pump & hydration bags-nice thing about being in hospital is they can deal w/nausea better.
e-mail here if questions.. bud

CAMaura · July 2005

HI there,

Tara has given you excellent information....not much forme to add. I had FOLFOX - with the two day infusion. I wasn't in the hospital for the infusion process; unforunately, I was there before they worked out my anti-nausea treatment. But wearing the fanny pack is not a big deal....except for catching it on chairs and stuff like that.
As for your surgeon, gosh, that is such a personal deision. I had the pleasure (oh yea) of waking during my original colonoscopy and seeing my tumor. When I came out of the drugs a bit more, I asked my nurses who they would choose. They both offered me the name of my surgeon - and I have never looked back.
They were adamant, and I can honestly say that I feel the same.
Is there any chance of asking your onc or someone within your Medical group about it? People do have opinions and nurses/hospital people hear good things and bad. You can also approach the two prospective surgeons with your specific concerns. Your questions about each sound very real and rational.
Take care and I wish you the best. Good luck and feel very confident in your final choice. It will help you through this.
Cheers,
Maura

kangatoo · July 2005

CAMaura said:
HI there,

Tara has given you excellent information....not much forme to add. I had FOLFOX - with the two day infusion. I wasn't in the hospital for the infusion process; unforunately, I was there before they worked out my anti-nausea treatment. But wearing the fanny pack is not a big deal....except for catching it on chairs and stuff like that.
As for your surgeon, gosh, that is such a personal deision. I had the pleasure (oh yea) of waking during my original colonoscopy and seeing my tumor. When I came out of the drugs a bit more, I asked my nurses who they would choose. They both offered me the name of my surgeon - and I have never looked back.
They were adamant, and I can honestly say that I feel the same.
Is there any chance of asking your onc or someone within your Medical group about it? People do have opinions and nurses/hospital people hear good things and bad. You can also approach the two prospective surgeons with your specific concerns. Your questions about each sound very real and rational.
Take care and I wish you the best. Good luck and feel very confident in your final choice. It will help you through this.
Cheers,
Maura

The main thing is to get the clear margins.....I think that no matter what surgeon does the op they will always try to avoid the bag if possible but would err towards caution if they feel caution is needed. I would personally be inclined to go for the surgeon that regularly does this operation....they are more likely to be a little more thorough.....they have seen it often and know exactly what to look for. I was told pre-op that I would possibly need a colostomy...scared tha hell out of me! I was fortunate tho and do not have a bag. My surgeon told me that he was extremely carefull to make sure the margins were clear...took more sigmoid colon than he needed to. He told me that originally he thought my rectum was at risk but during the surgey he was confidant that it was ok. Sometimes they really don't know until they can actually see the site. My cancer went thru the bowel wall(2/3 blockage) but no nodes involved(stage 2) He was surprised that they were not compramised. So in a way a lot of what they say is a bit of a guessing game until the actual surgery gives them a better view.
All our love.....we hope you get the best result possible in your case as I did.
Kanga n Jen

Unknown · July 2005

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Networks · July 2005

Hi,

I have been down the same road that you describe and I want you to understand that it is critical to find the most skilled surgeon to perform the TME. TME (Total mesorectal excision) (SP?) is a type of surgery that provides significant increases to our survival rates for rectal cancer. If I remember correctly something like 92% are free from recurrance. I highly recommend contacting the Mayo Clinic in Rochester because most insurance companies allow for a second opinion. My local Oncologist office did not mention Folfox or going for TME surgery about 14 months ago, but I'm so glad the Mayo insisted that I take this appproach and that our insurance covered the second opinion. E-mail me with any questions. I worked two weeks after surgery but as you know could not lift anything over ten pounds for six weeks. The surgery is tough, you will have tubes removed from your body on a daily basis and will enjoy the fact that they are gone. It depends on the physical requirements for your job.

Folfox got tougher with each dose and I experienced the common side effects. They progressively got worse with each treatment. The sensitivity to cold set in about six weeks into the treatments and was strong. You could not drink anything that was cold for the last 4 months. Fatigue and lack of appetite were tough to accept. I slept 12 hours a day over the last 4 months of treatments. I worked at least 30 hours per week while on chemo. Please do not assume that the doctors you are seeing are experts in their fields. I cringe when I think about taking the advice of the first doctor that examined me. Please get an expert involved that deals with rectal cancer only! You won't regret it.

BusterBrown · July 2005

I'm in the process of doing everything you've mentioned, crc surgery, folfox, and I'm starting radiation in a week.
I'm a 43 yr old male in good health, except for this cancer thing. I had surgery on May 24 ,2005 and I was release from the hospital on May 30th. The surgery wasn't exactly a walk in the park, but it wasnt' terrible either. The staff at the hospital were great, as was my surgeon. I was back at work in two weeks, still a little sore, but not too bad. I agree with the other posters, a good surgeon is worth his/her weight in gold. My incision completely healed in 4 weeks, the disolvable stitches were gone and there was little or no scabbing involved, it was remarkable...
Up to this point I've had 9 doses of folfox and I have little to no problems. I've haven't missed any work and the only real bugger has been the neuropathy. It seems worse today than it ever has. I'm able to drink cold things, beer:o), the thing that's buggin the crap out of me, is the numbness in my fingers and feet. It's worse no than ever, and I hope it eventually goes away...
The 44hr infusion is really not that bad, you just have to adapt to carrying a bag around. It' really no biggie, I'm always happiest when I get the bag removed, it means I have 12 days without chemo.
It's been a long road, and I'm still not out of the woods yet, I have to start radiation and chemotherapy next week for 5 wks. I'm sure I'll handle it, but I'm ready to hear the words remission from my doctor!!!
Buster

timlou · July 2005

Your surgeon is your most important decision. Your oncologist will use all the research available to cover your adjuvant therapy and subsequent side effects but......My husband used a general surgeon referred by a friend, we were not familiar with any surgeons in this area. He was on the insurance plan so off we went. My husband ended up with a nasty bowel infection called c-diff from the original resection and then after two weeks in th hospital for that got another infection this time in the blood from the port insertion done by the same doc...Please use a surgeon expert in the colon/rectum your oncologist will thank you. My husband had little problem with the 5FU bag at home except for once when the bells and whistles went off in the middle of the night, we went to the e.r. and they didn't have a clue how to stop it so we learned how to shut the thing off for next time and there never was a next time. He has been off chemo since February, still has neuropathy in hands and feet but getting better all the time, if you have any other questions you can e=mail anytime. Good luck. Louise lcw9813@netzero.net

HisJoy · July 2005

I can speak to the FOLFOX treatment. I just finished treatment #9 with three to go. At first, I went every 2 weeks, but my liver objected to that, and so now I'm on every 3 week schedule.

The pump works like this: After your chemo, they will hook you up to a pump that you can wear around your shoulders or waist (I found the shoulder way more comfortable since it was a bit heavy to be comfy around the waist). You'll go on home and go about your business as usual. (Hang the pump on your bedpost overnight and you can still roll around and get comfortable). The pump is no big deal at all and while you are wearing it, the flurorouacil is going into your body intravenously. You do NOT need to be in the hospital during infusion. After 46 hours, you return to your dr's office and they take the pump off and you go on your merry way again. VERY few side effects associated with flurorouacil (5-FU for short). It's really not bad. Hang in there!

surgery and adjuvant chemo

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