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Surgery or No Surgery??

mcci47
Posts: 6
Joined: Jun 2018

My husband has Stage 4 rectal cancer.  He has a rectal mass and one lung nodule.  He has had 5 1/2 weeks of chemo pills/radiation, finishing up 5 radiation treatments to the lung nodule next week, and is now looking at surgery and 6 months of chemo afterward.  He will have an iliostomy bag until the chemo is completed.

We have been reading some of the information on bowel disfunction on the discussion boards and he is wondering if anyone has decided not to have surgery and if so, how that went.

The oncologist is very against not having the surgery to remove the rectal mass and says 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.  

We would appreciate any thoughts/past experiences anyone has had.

 

Lovekitties's picture
Lovekitties
Posts: 3330
Joined: Jan 2010

Surgery would be my choice.  Having an iliosomy bag even after chemo is not the end of the world.  Many people you see on the street have one or a colostomy and live active lives.  Yes it takes some getting used to.  I had no choice and have a perm colostomy.  If you are concerned about after the iliostomy reversal and the "retraining" of the bowel, yes people have had issues.  Some prefer not to have the reversal just for that reason.  Not having surgery allows for the possibility of the mass to grow, even with radiation/chemo, and could cause very serious problems.

As always, every person is different, and every doctor has his/her own opinion as to what is best.  Talk with the surgeon and the onc about the "if we do" and "if we don't" possibilities and make the choice best for him.

Wishing for best possible outcome,

Marie who loves kitties

Annabelle41415's picture
Annabelle41415
Posts: 6239
Joined: Feb 2009

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

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Surgery is the best way to deal with cancer. Anything else is less effective. I'd never suggest someone not have the surgery if it's recommended.

Is it the illeostomy you're concerned about? I had it done over 4 years ago and I could have it reversed but I'm not. I hated it at first but now it just makes life easier. There's no way I'm going to risk the issues that can come after reversal and my bowels- which were always an issue with IBS- would probably be an issue for the rest of my life. The ostomy is easy to take care of and it's tough. It can take tight jeans, riding horses, exercising, pretty much anything. There's a bullrider in our area with one and he still rides bulls with it. I just have to make sure I buy tops that disguise it. I'm 55, I don't need a tight top to wear, anyway.

Jan

airborne72's picture
airborne72
Posts: 276
Joined: Sep 2012

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

 

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

Similar to others I opted for surgery to remove the tumor, rectum, ileostomy, chemo and ileostomy reversal.  It was a long and challenging period but I'm glad I did it and would do it again.  I'm living the new normal and enjoying a wonderful full life.  I've always been a healthy eater so I have had to make some adjustments in my diet including eating less raw vegatables as my system can't digest/process them. So hard in the summer. Grrrr.... 

Cindy  

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

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

abita's picture
abita
Posts: 655
Joined: Dec 2017

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
Posts: 6
Joined: Jun 2018

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!

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

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.

Annabelle41415's picture
Annabelle41415
Posts: 6239
Joined: Feb 2009

The urgency on a decision is probably due to the fact that radiation keeps working until about 6-8 weeks after stopping, but if there is still cells left that haven't been killed it could start growing all over again.  The surgery is doable so don't think that this is a bad thing - it is actually the best thing.  Talk to the doctors and go from there.  Again, wishing the best.

Kim

lhduffer
Posts: 72
Joined: Oct 2015

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.

 

mcci47
Posts: 6
Joined: Jun 2018

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 :)

Annabelle41415's picture
Annabelle41415
Posts: 6239
Joined: Feb 2009

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

lhduffer
Posts: 72
Joined: Oct 2015

I had my ileostomy for 5 months.  I have had and still do have bowel issues.  The months after the reversal are the most challenging and can make you question your decision, however, I am glad I did it.  Urgency can be an issue and spending lengthy times in the bathroom at times as I experience "clustering".  What I eat can have a definite impact on my bathroom issues and that is something that you learn over time.

I had my reversal September 2016 and am overall doing very well and have adjusted to my "new normal".  Although it has sometimes cut an evening out short or impacted a few activities, I do not let it stop me.  Last year we took a trip to Europe, long plane ride and all.  We just got back from a trip to CA for a golf trip to Pebble and exploring Yosemite and I was able to do pretty much everything I wanted to.  It definitely changes life, but it does not stop you from living and enjoying life.

As for having the reversal first, I believe the reason they would not recommend this is that chemo can cause bathroom issues on its own and your body needs time to heal from the reversal surgery.  I can't imagine dealing with that while healing from the surgery.  However, we are each unique individuals and all have different experiences.

Wishing you the best!

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I finished the six months of chemo after the surgery a few weeks ago and the reversal is scheduled for the end of this month. One of the factors about life after surgery and reversal is length to the anal verge. Mine is a bit over 5 CM. Basically the longer the distance, the better the odds for good function. I won't know until it happens and I have to deal with it.

The wait and watch protocols for treating CRC are usually for Stage 2. There are trials for Stage 3 patients with Chemo, then Chemo/Radiation, then surgery if necessary.

From a personal perspective, my tumor was about 100 cubic centimeters and had shrunk to under 10 cubic centimeters from chemo and radiation. But I still wanted what remained out of me to avoid the potential for spread.

Mayo Clinic is a top hospital so you should get great advice there.

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