Surgery or No Surgery??

My mass was in the rectum and they did chemo/radiation, surgery to remove the entire rectum with temp illostomy, more chemo then reversal.  Cutting it out is best.  They will strive for clean margins (meaning they cut enough around the mass that there is no cancer beyond the mass) to ensure they get it all.  Radiation and chemo doesn't necessarily get all cells in the mass so if you cut it away, it's best.  It's all your own personal choice though.  Just make sure whatever decision he makes, he can live with without regrets.

Kim

mcci47:

I am a stage 2 rectal cancer survivor.  A large mass was discovered in my rectum in May 2017.  I underwent 5 1/2 weeks of chemo and radiation in July and August.  During that time my tumor was shrunk and physically eliminated through bowel movements (I could see large pieces of the mass in the toilet).  A CT scan in September could not show any evidence of the tumor.  It was gone.

In October I submitted to a resection surgery.  Afterwards, the surgeon said that he could not see any evidence of cancer in my rectum.  My margins were clear.  To allow my rectum tissue ample opportunity to recover, the surgeon installed a temporary ileostomy (a nice post-operation surprise).  I had the bag from October 2017 until late March 2018, when I had it reversed.

Upon advice from my oncologist, I also underwent "mop-up" chemo beginning in mid November 2017.  That treatment consisted of FOLFOX6 and it knocked me to my knees.  After three sessions I stopped.

Throughout my journey I self-educated and inquired from each doctor (surgeon, chemo and rad oncologists) about their recommendations and the potential outcome if no action was taken.  Once I got into the physically demanding situations, my thinking was warped because all I was seeking was relief from the current pain/discomfort/inconvenience of the treatments.  Consequently, I always sought the opinion of others to off-set my warped thinking.

Because I was stage 2 and 66 years old (now I am 67), I felt confident that terminating the mop-up chemo early would not jeopardize my survival chances or shorten my life span.  That was a gamble that I was willing to take.  So far, I am cancer free.

Now to the issue of the ileostomy, its reversal, and my recovery from that situation.  I am one of the very fortunate people who have had an ostomy reversed and have returned "almost" to normal bowel movements and control of those movements.  Who knows why?  I speculated that my successful outcome was due to the fact that prior to cancer I never had any issues with BM's; I ate and continue to eat a healthy diet; my ileostomy was only in place for five months; and the surgeon did not have to remove too much of my rectum.  All speculation on my part, but the results were surprising to my surgeon and to my oncologist.  Obviously, few patients end up with such a good outcome.

Back to your question.  All of us are unique.  The decision to do any or all of what is medically recommended is ultimately your decision (in this case, your husband's decision).  The underlying goal for me throughout my decision-making process was QUALITY OF LIFE.  If I had the chance for a do over, then I would not submit to the resection surgery.  However, if I were 46 instead of 66 when my cancer appeared, then my decision would be different. Whatever decision your husband makes, it's important that he makes it because he must live with the outcome. 

Jim

mcci47 said:

Thanks for the info!

We appreciate the information.  My husband has an appointment with a surgeon and another oncologist later this month who are with the Mayo Clinic and we just wanted to get some thoughts on what others had experienced.  We both know that surgery potentially provides the best outcome but are concerned about quality of life after the surgery as he is still working and will be for at least 4 years.  We were considering taking a wait and see approach but because of the oncologist saying the surgery needed to be done within 8 to 10 weeks, felt it was urgent to decide. It appears from at least one person who had the surgery well after 8 to 10 weeks, that seeing what the Mayo Clinic doctors have to say will be helpful.

Thank you to everyone for your comments!

I really believe surgery gave me a second chance at life. I had my rectum and part of my colon removed, along with a permanent colostomy. I returned to work about 12 weeks after. Still at work after 8 months. I take every other Friday off for my infusions. I used to get angry at all the TV commercials showing vibrant looking people on chemo, running around, working etc. But I can honestly say it's possible.

I was also stage 4 and did chemo, then chemo and radiation and then had the LAR surgery with a temporary ileostomy, more chemo and then the reversal.  Being only 50 years old, I wanted to do the NOM (non-operative management) as I was showing complete clinical response and I did not want to deal with a future of bathroom issues.  However, I ultimately opted for the timely surgery.

My surgeon's PA explained to me that should I forgo the surgery and then if I needed the surgery later I would lose the possibility of the temporary ileostomy and I would then have a permanent colostomy due to the changes from radiation.  I am glad I chose the surgery, even with the challenges of living without a rectum, as they did find one node that still had cancer in it, which meant I had not had a complete pathological response.

Getting another opinion from Mayo is an excellent idea.  Wishing you all the best as you move forward.

lizard44 said:

You say the oncologist is recommending surgery right away.

What does the surgeon  say?  I'm wondering because of the  statement that " there is only an 8 to 10 week window to have the surgery because after that, scar tissue forms from the radiation and it makes the surgery difficult or impossible after that,"  and that was not my surgeon's  view, based on recent studies he mentioned which allowed for a "watch and wait approach" after neoadjuvant treatment for some patients  meeting certain criteria.  I was diagnosed with Stage 4 rectal cancer with liver mets in May 2015, the rectal tumor was very low and the surgeon felt the  anal sphincter couldn't be saved and that  radical APR surgery would be needed.. But he was   concerned that  if he went ahead with the rectal surgery while there was a chance of the liver  mets growing,  it would put unneccesary stress on  my body,making it less able to  heal  fully and quickly so he opted to deal with the liver mets first and try to shrink the  rectal tumor. I had  chemo initially, then  radiation plus chemo  in Nov-Dec. 2015. The rectal tumor almost disappeared, but the  liver  tumor  increased in size. The liver mets were ablated in August  2016, followed by more chemo. By September 2017, my colorectal  surgeon discovered the rectal tumor was showing signs of  growing again, and decided it was time to go ahead with the surgery. I had an abdominoperineal resection [APR]with permanent colostomy in October 2017, far beyond the  8-10 week  period your oncologist mentioned. I'm now on maintenance chemo , doing well, and have had no complications.  As others have said, each case is different and different doctors take different approaches, but  if you have questions,  I would check with  your  husband's surgeon, and the medical and radiation oncologists and make sure they are all in agreement on the best  way to go forward and that you and your  husband have confidence in them and are comfrtable with their  treatment plan. Best of luck- I hope all goes well.

lizard44/Grace

Curious as to why the maintenance chemo? I am currently waiting for the post chemo scan and am anxious. I had a scan after 4 chemos, surgery to remove all tumors they could see. The chemo did work as the tumors shrunk by almost half after 4 rounds. Then after break for surgery, had one and a half more rounds of folfox, reaction, then continued with 7 rounds of folfiri. My question really pertains to my fear that after all that there are still hidden cells somewhere that start growing. And if that is why you are now on maintenance chemo. I have already made peace with possibility of needing maintenance chemo and knowing that it is okay as long as I continue to live.

mcci47 said:

Thank you for the information!

How long did you have the ileostomy bag for?  Did you have any bowel issues after the reversal?

One of the things my husband wants to find out is if having the ileostomy reversed 8 weeks after surgery and then doing chemo is an option because he has read that the longer the ileostomy is present, the more likely of having bowel issues.  One of many issues he will discuss with the doctors at the Mayo Clinic

This is my story, but my reversal went well but urgency 9 years later is still there.  I'm still going up to 15 times a day.  It's not a picnic, but I'm still loving and living life, just not normal like it used to be.  My whole rectum was removed as well so that could be totatlly different from your husbands.  I'm still able to go out during short periods of time a day.  I'm here with a life that God has chosen for me and taken all that I'm able when I'm able.  There are many, many successful reversals on here and wishing your husband the best.

Kim