Recurrance rectal in sacrum

[Guest T]

Hi,
I have posted a few times. It is confirmed after three biopsy's, my husbands cancer is back. It looks like it is inoperable. We are very worried. We are seeing a surgeon at moffitt next Thursday. Hopefully to get genetic testing done to see which chemo to use that will work the best. He had FOLFOX in 2006. He is maxed out on radiation. If it can't be resected I guess chemo is our only option. To all of you who have rectal recurrance in the pre sacrum, what did you do? How did it work? What are the side affects? Is there any real hope? Please help. Devestated wife.
Toni

[Lee]

Hi Guest,

So sorry to hear it has come back for your husband. I had rectal cancer and have been fortunate, no reoccurence. You may want to get a 2nd and 3rd opinion at a major cancer treatment center. This is what I would have done if i did have a reoccurence. Does your husband have a colostomy now? If not, is it possible to take everything out with that type of surgery. I hope there is something that can be done him.

He will be in my prayers.

Lee

[Guest T]

Hi Lee,
Yes we are going to Moffitt which is a major cancer hospital in Tampa Fl. next Thursday. The first surgeon we saw thinks it started in his tail bone this time. If that is the cast surgery won't remove all of it. He does not have a colostomy at this time but if someone can do the surgery he will need one. We just hope that the surgery can be done. If not we have to find the best tyepe of chemo for him. I am hoping someone will answer my questions on that.

Thank you for your response.
Toni

[girlnextdoor]

Toni,

Can't answer your question yet as we are in the same spot. Turns out my husbands recurrence is also most likely to the presacral region (not just the lungs and nodes). We didn't biopsy there (just the lung) so we're not definite.

We are getting kRAS tested to see what options we have with chemo. David was on FOLFOX the first time around. This time will be FOLFORI to start. We only tried Avastin once since he had a bad gastro response to it (one of the potentially fatal ones) but might try a super low dose again and go up depending on his response.

We get another port tomorrow and chemo next Monday. After these rounds, and depending on the scan, we'll go to MD Anderson to see if there are any surgical options.

Hang in there and stay in touch. I feel your pain...

Lisa

[bdurant]

My husband has recurrence of rectal cancer. He was given no hope or surgery option from the doctors in Ft. Worth over a year ago. I researched to find that M D Anderson has done the surgery (total pelvic exenteration. They have treated him with chemo, and recently surgery for a lung met. We go back tomorrow to speak to the surgeon at MDA and the radiologist, as they were planning to do 2 weeks (twice per day of targeted radiation). Since he had surgery in 2005, and radiation, it is a major concern due to the large void which will be left after surgery and the damage from scar tissue and radiation.
My husband has done very well, kept working until April 21st lung surgery, and is still active and was planning to go back to work Monday, until the surgeon set up the appointments, so we go back to MDA to see what they have decided to do, They are very careful about maintaining quality of life and they have a team to review and decide upon options.
I know how hard it is on both of you and your family. Just keep on living each day to the fullest and seek other opinions. I'm glad that we did, no matter what happens, We keep on trying and we won't allow cancer to take all our quality time. As you know the fear and the uncertainty could easily take control. I know, easy said and hard to do;, but it has helped us maintain the strength to keep fighting.

[Guest1]

My father has mets in his sacrum and unfortunately, there isn't much more than chemo and radiation as options. If radiation is out, then chemo is the only thing that's left under current technology. That said, sacral tumors seem to grow very slowly - if at all - so you may have little to worry about right now (cold comfort, I know). One thing to be very concerned about is the shifting of sacral tumors. Shifting can cause a condition called "cauda equina," which is compression of the nerves going through the sacrum. If not caught in time, cauda equina can result in permanent incontinence, lower body weakness, and in some cases, completely lower body paralysis. I don't mean to scare you, but it's quite serious. If your husband experiences any problems going to the bathroom or weakness in his lower extremities, it may mean the sacral tumors have shifted and are impinging on the massive nerve bundle. Cauda equina must generally be treated within 24-48 hours through emergency surger or its effects are generally permanent (or take a year or more to recover from, if that's even possible).

[Guest]

I know rectal cancer has a relatively high rate of recurrence - but it still seems like there are way too many people on this board who have recurrences after their first lot of chemorad, surgery and chemo It's horrible!

Do your surgeons give you any possible explanation? Were the margins not clear in the first surgery? Were there multiple positive lymph nodes?

I hope for good outcomes for all of you!

[Guest T]

Thank you all so much for your reply's. I will watch out for that Guest 1. All of you will be in my prayers. I'll let you know what the Dr. at Moffitt cancer center say's on Thursday.
Love Toni

[Lifes2short]

When they did my rectal resection they found a tumor in my sacrum. It was inoperable due to extensive radiation damage. I so hope you hear better news.

[girlnextdoor]

Guest,

David's recurrence of his rectal cancer most likely stems from many variables. Turned out that his rectal tumor did not respond well to chemo/rad before surgery, his surgeon found it "adhered" to his prostate during surgery and had to be scraped off leaving positive margins. One lymph node was involved in the group that was taken and he already had a lung nodule they were watching.

So he was already Stage IV.

I hate this. I hate this so much it makes me angry and cry.

Lisa

[bdurant]

Research and get other opinions; because some doctors say surgery is no option; but, large cancer centers like MDA are equipped with the team of specialists who have done the surgeries many times. Some hope is better than no hope and there are long term survivors who have had the surgeries which some doctors won't consider.

[Guest T]

Thank you bdurant I will. We are going to Moffitt on Thursday.

Guest my husband did not have pre op chemo rad they were worried about an obstruction, so we went straight to surgery. He had chemo/rad then folfox after surgery. He was NED for two years after that so it worked good for him. The Dr. said that if he did not have clear margins then the met would have started inside the colon. My husband's started out side this time so there were probaly left over lympnodes outside of the rectal wall after surgery. He had 2 positive lympnodes out of 13. He was very big over 300 pds. and that makes a big diffrence. The surgery is more difficult on a large person. He was stage 3c now stage 4. We will see what the surgeon at Moffitt says. Thank you for your concern.

Toni

[Guest T]

I wanted to update everyone. We saw a Dr. he is a professor at FSU and director of colo-recatal surgery, and on the staff at Moffitt cancer center. He wants to do surgery to remove the whole rectum and possibly the end of the tail bone. My husband will have a colostomy bag and in my opinion may end up with one for the bladder as well. The reason I think that is because the nerves at the end of the tailbone with have to be sacraficed. The nerve that tells you your bladder is full is located there as well as others. They wont know if they have clear margins until they look at the bone under the micrascope. We cant be sure if they can get all of the cancer until then. My husband is very reluctant to have this surgery. Not only because of the colostomy but it is major major surgery. His healing took 6 mos during his last surgery. I would like your thoughts on this matter. What would you do. Go for the surgery or try folofox with avastin first? Also, anyone that has had this surgery or one like it please chime in and let me know the side affects of this surgery. Please be open as we need to know all of what can happen.

Thanks For your help in this matter.

[Guest1]

I wanted to update everyone. We saw a Dr. he is a professor at FSU and director of colo-recatal surgery, and on the staff at Moffitt cancer center. He wants to do surgery to remove the whole rectum and possibly the end of the tail bone. My husband will have a colostomy bag and in my opinion may end up with one for the bladder as well. The reason I think that is because the nerves at the end of the tailbone with have to be sacraficed. The nerve that tells you your bladder is full is located there as well as others. They wont know if they have clear margins until they look at the bone under the micrascope. We cant be sure if they can get all of the cancer until then. My husband is very reluctant to have this surgery. Not only because of the colostomy but it is major major surgery. His healing took 6 mos during his last surgery. I would like your thoughts on this matter. What would you do. Go for the surgery or try folofox with avastin first? Also, anyone that has had this surgery or one like it please chime in and let me know the side affects of this surgery. Please be open as we need to know all of what can happen.

Thanks For your help in this matter.

The problem, as you well know, is that you won't know if the procedure is successful until AFTER it's been done. If it isn't successful, your husband's quality of life will literally be "in the toilet." Unfortunately, chemotherapy doesn't work that well on bone metastases. This is why radiation is usually prescribed. Yet radiation would essentially have the same effect as the surgery, namely, radiation will weaken the tissue in the pelvic area and possibly destroy the nerve in the tail bone that would allow your husband to have normal bladder function.

My father didn't have the option of the surgery you described, but still has serious incontinence issues due to the sacral tumors shifting and putting pressure on the nerve bundle (cauda equina). He ended up with the same problem your husband is facing, but without having gone through the surgery. At the end of the day, that's the result you are possibly facing. If your husband has the surgery, he WILL be incontinent and unable to urinate normally. On the other hand, if he doesn't have the surgery and goes with the chemotherapy, it's quite likely (though not guaranteed) that he'll end up in the same position. However, there are two main differences: (1) your husband may never get cauda equina as a result of his sacral tumors, and (2) your husband will enjoy a higher quality of life in the interim even if he does get cauda equina. In the meantime, it's quite possible that improvements in stereotactic radiotherapy in the next year or so will decrease the risk of damage to the healthy tissue in his pelvic region and spare the nerves in the sacrum that control his bladder.

Bottom line advice: Consider going with the chemotherapy for now and talking to a stereotactic radiotherapy specialist and see what s/he can do for your husband.

[Lee]

Hi Toni,

I have a colostomy bag today, it is permanent and it was my decision. I was diagnosed 5 years ago with stage III (6/13 nodes positive) rectal cancer. I had radiation prior to my surgery, and that had destroyed most of my rectal muscles, I was tied to the house because of bathroom issues. I gave my colon rectal surgeon carte blanc to take all she wanted, just get all the cancer out. I have been cancer free every since. And because of my colostomy bag, I got my freedom back. I can do everything I did before my cancer diagnoses. Living with a colostomy bag is not that bad. I have a wonderful husband and 2 kids who are supportive in all of this. And while the surgery is not fun, I did survive it and recovery. I took it one day at a time, and I walked, walked walked as much as I could each day. I truly believe this helped in my healing process.

Following my surgery, my bladder nerve endings were not the best. I made a point of going to the bathroom every 4 hrs whether I felt the urge or not. Today I believe those nerve endings are a bit hyper senitive. I go more frequently because it hurts otherwise.

It is good that you have options now, Now get a 3rd opinion. Again at a major cancer treatment center. My advice to your husband, before he makes any decision, make sure he has all his facts, so that way, he can make an INFORMED decision.

Hope this helps, all my best to you both,

Lee