Surgery...rectal cancer surgery...probable apr...freaking out...eeekkkk

Sharronoffaith · January 2016

hi everyone,

I know there are worse things than this....but, it is really even hard to write. I thought i was finally coming to terms with the idea of having an lar with tme.

i had the neoadjuvant chemoradiation to shrink my tumor because it is so low. So, they are talking about the sphincter saving surgery all along and I'm feeling pretty hopeful, and I had a good, but not full response, to the neoadjuvant.

anyway, i get to the surgeon today, and he says they are just trying to "save my bottom" and right away I'm not liking the way he is talking like it is becoming less likely. Even before he really looked they are backtracking. Tumor is like 1 centimeter from the anal verge, and he is saying I would have issues with control and wear a diper at night. So, now he says I will probably need an apr.

any reply is greatly appreciated. I am so troubled by this. We didn't even discuss the actual surgery, but it is scheduled for near the end of February. I walked out of there stunned. It is a great hospital, and he is a well renowned surgeon, but I can't help but feel awful that I went through all the chemoradiation specifically to avoid this.

thanks for any insight. It is so new to me today that I don't even want to face it.

thanks again,

sharon

Lovekitties · January 2016

Dear Sharon

Unfortunately there are no guarantees with cancer treatments.

I had a rectal tumor and got a perm colostomy March 2010.

Yes, life is different because of it, but it is not terrible. It has not kept me from doing the things I want to do.

As I have read the stories of others here whose surgeons attempted to avoid a perm ostomy, some were very successful with no bathroom issues after, but there is always the other side of the coin with some who felt tied to the bathroom because of less than adequate control.

I know of several who actually chose to later get a perm ostomy to improve their quality of life.

If you have confidence in your surgeon and you feel he is trying to give you the best quality of life after surgery, accept it, study it, and go for it.

It is a lot to process, I know, yet you can have a good life with an ostomy.

Marie who loves kitties

John23 · January 2016

Sad news.. ?

Sad news..

It’s unfortunate that so many individuals have so much of a problem with the idea of having a stoma. For too, too many, the “stigma” prevents them from making a more informed choice of care.

The United Ostomy board can provide some insight regarding Ostomies.

https://www.uoaa.org/forum/index.php

I’m of the crowd that believes the surgical removal of a cancer tumor, at any cost, is far better than attempting to “shrink it” to save the discomfort of surgical removal.

Unfortunately not all surgeons offer the choice, and assume the patient would prefer to remain as “normal” physically, as possible.

Read at the UOAA forum, and don’t fear having an Ostomy or a “Barbie Butt”; it can save your life!

Think good things; make them happen!

John

lizard44 · January 2016

Sharon, sorry you got sort of blind-sided

I have a very low rectal tumor too, stage 4 with mets to the liver, but they have said all along there was probably little possibility of saving the sphincter muscle if they did surgery. I had the neoadjuvant chemo, eight rounds of FOLFOX plus Avastin, which shrank the rectal tumor and the liver tumor, but then a couple of tiny spots showed up on the liver which may or may not be cancerous and we decided to go ahead with 28 rounds of radiation and chemo (5-FU) which I finished up on Dec. 30. Because of my age (71) size (85 pounds soaking wet) and some heart and lung complications the surgeon is hoping for a complete clinical and pathological response so that we can take a non-operative management approach but that's a long shot. I have a CT scan tomorrow then meet with the oncologist next week and the surgeon after that to discuss the next steps. The way it was explained to me, with the tumor so close to the anal verge, there is a possibiilty that the sphincter muscle will be damaged or weakened resulting in bowel leakage problems or worse. Given that scenario, dealing with an ostomy doesn't really sound all that bad. I hope you are able to have the sphincter saving surgery, but if you can't there are quite a few folks here who have had the more radical surgery and who lead pretty normal (well, as normal as any of us can live) lives, and function pretty well with an ostomy. Hopefully one of them will jump in and give you some info that will reassure you better than I can.

Sharronoffaith · January 2016

Lovekitties said:
Dear Sharon
Unfortunately there are no guarantees with cancer treatments.

I had a rectal tumor and got a perm colostomy March 2010.

Yes, life is different because of it, but it is not terrible. It has not kept me from doing the things I want to do.

As I have read the stories of others here whose surgeons attempted to avoid a perm ostomy, some were very successful with no bathroom issues after, but there is always the other side of the coin with some who felt tied to the bathroom because of less than adequate control.

I know of several who actually chose to later get a perm ostomy to improve their quality of life.

If you have confidence in your surgeon and you feel he is trying to give you the best quality of life after surgery, accept it, study it, and go for it.

It is a lot to process, I know, yet you can have a good life with an ostomy.

Marie who loves kitties

Thank you so much...

Dear Marie who loves kitties (even your blog name brings a smile!)

thanks so much for posting. Yeah, sadly I want my "normal" and was willing to go through a lot to get that. But I am feeling better posting here and getting feedback from those who really know. I really appreciate that. Funny how I was afraid of the LAR/TME until the apr came along. I say that as I'm sure I would much rather be cancer free than to keep my plumbing.

thanks and best wishes. I love kitties too! But, I'm thinking I will get myself a nice aquarium after all this. I would surely rather have the cancer gone, rather than keep my butt and have it rear its ugly head again--pun intended

many blessings and well wishes to you and all kitties!

Sharronoffaith · January 2016

lizard44 said:
Sharon, sorry you got sort of blind-sided
I have a very low rectal tumor too, stage 4 with mets to the liver, but they have said all along there was probably little possibility of saving the sphincter muscle if they did surgery. I had the neoadjuvant chemo, eight rounds of FOLFOX plus Avastin, which shrank the rectal tumor and the liver tumor, but then a couple of tiny spots showed up on the liver which may or may not be cancerous and we decided to go ahead with 28 rounds of radiation and chemo (5-FU) which I finished up on Dec. 30. Because of my age (71) size (85 pounds soaking wet) and some heart and lung complications the surgeon is hoping for a complete clinical and pathological response so that we can take a non-operative management approach but that's a long shot. I have a CT scan tomorrow then meet with the oncologist next week and the surgeon after that to discuss the next steps. The way it was explained to me, with the tumor so close to the anal verge, there is a possibiilty that the sphincter muscle will be damaged or weakened resulting in bowel leakage problems or worse. Given that scenario, dealing with an ostomy doesn't really sound all that bad. I hope you are able to have the sphincter saving surgery, but if you can't there are quite a few folks here who have had the more radical surgery and who lead pretty normal (well, as normal as any of us can live) lives, and function pretty well with an ostomy. Hopefully one of them will jump in and give you some info that will reassure you better than I can.

Thanks John and Lizard

folks here help me to put things in perspective. Yeah, I kinda knew even if they do the sphincter saving, on a real low tumor there are usually issues. Thanks, and I will be praying that you get a complete response!

i think my surgeon was taking that into account, and knowing it would be so close, he was figuring I would have issues. But, it is buggy that they were all along discussing it as temp.

stupid stupid stupid cancer.

lp1964 · January 2016

Dear Friend,

I had your surgery over two years ago with the abdominal muscle flap to close the anal area (no Barbie butt!) and mainly to prevent my intestines sinking into the pelvis. This is even a greater possibility for women so if it is offered, take it. I have a permanent colostomy to which I'm used to by now and not holding me back from work, activities, socializing etc. Cancer Sucks PERIOD! So we take the best option we can.

Wish you the best!

Laz

Sharronoffaith · January 2016

lp1964 said:
Dear Friend,
I had your surgery over two years ago with the abdominal muscle flap to close the anal area (no Barbie butt!) and mainly to prevent my intestines sinking into the pelvis. This is even a greater possibility for women so if it is offered, take it. I have a permanent colostomy to which I'm used to by now and not holding me back from work, activities, socializing etc. Cancer Sucks PERIOD! So we take the best option we can.

Wish you the best!

Laz

Hmm....confused on the barbie butt

hi Laz,

thanks. And thanks for your posting. This site is fantastic thanks to folks like you who post and help so frequently. It bothered my that my surgeon was a man of few words. I think he is a fantastic surgeon from what I have heard, but we have not discussed the surgery at all. They know I read a lot through medical journals and stuff, but that is how I am, and I have always felt it my duty to be informed and not require them to spell out everything.

Now you mention an "abdominal flap" and it sounds like something they should clearly just do, and a patient shouldn't have to ask for. But, after the surgeon did the sigmoidoscopy, and we talked a little, and my distress was clear over the APR now firmly on the table, he motioned as if we would have a few words afterward. And then nobody knew what was going on, and the nurse flys around trying to find him. He comes up and schedules me to see the stoma nurses, and then surgery on 2/23.

Am I in good hands? I don't question everything, or act as a know-it-all or anything, but I expect to be told something before the morning of surgery. The tumor had a good, but not complete response to the chemoradiation, and they were all about the butt saving back then. Now, I'm thinking what the heck did they expect? How much better did they expect the neoadjuvant to work, when a complete response is not the typical outcome. I just feel like I need some bedside manner with this guy.

i do have a "team" though, and a call from one doctor there is being circulated with my concerns. This is not a surgery that has to happen tomorrow as the tumor is still shrinking. Thanks again for you input!

many well wishes,

sharon

John23 · January 2016

Sharronoffaith said:
Hmm....confused on the barbie butt
hi Laz,

thanks. And thanks for your posting. This site is fantastic thanks to folks like you who post and help so frequently. It bothered my that my surgeon was a man of few words. I think he is a fantastic surgeon from what I have heard, but we have not discussed the surgery at all. They know I read a lot through medical journals and stuff, but that is how I am, and I have always felt it my duty to be informed and not require them to spell out everything.

Now you mention an "abdominal flap" and it sounds like something they should clearly just do, and a patient shouldn't have to ask for. But, after the surgeon did the sigmoidoscopy, and we talked a little, and my distress was clear over the APR now firmly on the table, he motioned as if we would have a few words afterward. And then nobody knew what was going on, and the nurse flys around trying to find him. He comes up and schedules me to see the stoma nurses, and then surgery on 2/23.

Am I in good hands? I don't question everything, or act as a know-it-all or anything, but I expect to be told something before the morning of surgery. The tumor had a good, but not complete response to the chemoradiation, and they were all about the butt saving back then. Now, I'm thinking what the heck did they expect? How much better did they expect the neoadjuvant to work, when a complete response is not the typical outcome. I just feel like I need some bedside manner with this guy.

i do have a "team" though, and a call from one doctor there is being circulated with my concerns. This is not a surgery that has to happen tomorrow as the tumor is still shrinking. Thanks again for you input!

many well wishes,

sharon

Barbie Butt

Barbie Butt

That refers to what your backside looks like after they remove the rectum, anus, etc etc… Smooth w/out the Donald J, like a Barbie doll…..

If there will never be a reversal, removing it all is the best route to go. Leaving the sphincter muscle is wise, and they say helps being comfortable. Leaving a “rectal stump” will eventually cause problems with mucus discharge and an increased possibility of rectal cancer recurrence.

Best wishes!

John

JanJan63 · January 2016

I don't know if this will

I don't know if this will help at all but I have an ostomy that was supposed to be temporary. When I first had it I hated it and couldn't wait for the day it was reversed. I've now had it for coming on two years. I'm on the list for reversing it but I'm not sure I'm going to do it. On the one hand I'd like to feel more 'normal'. On the other hand I had terrible IBS for all of my adult life and it's freeing to not worry about cramps and accidents and what I eat and if I'm stressed. My surgeon said the IBS would probably be worse after the reversal. And I've read about people who have incontinence afterwards or even for several months. Some sleep on puppy pads for years.

So I have a choice to make but if I was told that it was irreversable I'd probably be really upset because I had no choice and would want it reversed. It's an emotional thing. The most important thing is that we live, the second is that we have quality of life. Sometimes the type of quality of life we have may not be what we'd have wanted but might be the best for us. I kind of miss passing wind and scaring my dog but I don't miss just leaving the house and having terrible cramps and barely making it to a public place and then having to go straight to a bathroom and then being embarassed by the noise and smell. Or not being able to go anywhere at all on a bad day.

I hope things turn out well for you.

Jan

Sharronoffaith · January 2016

JanJan63 said:
I don't know if this will
I don't know if this will help at all but I have an ostomy that was supposed to be temporary. When I first had it I hated it and couldn't wait for the day it was reversed. I've now had it for coming on two years. I'm on the list for reversing it but I'm not sure I'm going to do it. On the one hand I'd like to feel more 'normal'. On the other hand I had terrible IBS for all of my adult life and it's freeing to not worry about cramps and accidents and what I eat and if I'm stressed. My surgeon said the IBS would probably be worse after the reversal. And I've read about people who have incontinence afterwards or even for several months. Some sleep on puppy pads for years.

So I have a choice to make but if I was told that it was irreversable I'd probably be really upset because I had no choice and would want it reversed. It's an emotional thing. The most important thing is that we live, the second is that we have quality of life. Sometimes the type of quality of life we have may not be what we'd have wanted but might be the best for us. I kind of miss passing wind and scaring my dog but I don't miss just leaving the house and having terrible cramps and barely making it to a public place and then having to go straight to a bathroom and then being embarassed by the noise and smell. Or not being able to go anywhere at all on a bad day.

I hope things turn out well for you.

Jan

Thanks Jan ...my thoughts

hi Jan,

sorry to hear we are in similar circumstances, but yes, your writing did help me. If I were you, and had the ostomy, and were ok with it, I would personally keep it especially since you say you had problems with digestive issues prior. I can also only imagine that if they put together your plumbing again, you would have to go through the process of relearning to use your bowels again to begin with.

my big problem with the APR is that I don't have any issues with urgency or accidents, and never had. My tumor has shrunk, and is about 1/3 the original size. So, when the surgeon started right away with APR I wondered if it was just that a LAR/TME in my very low rectal cancer would just be the harder route. I know it can be done, as he tried to make like "oh, you will need to wear a diaper at night." i went through neoadjuvant and its resulting annoiances purely to avoid APR. And, my tumor is maybe the size of a dime, but located around 1cm from the anal verge.

i am grateful to be in a major hospital and getting great care. But, I am not one to believe that if you are the little guy, you don't get the intensive robotic surgeries the big folks get. And, that is what I am left feeling like.

oh well,

i am very spiritual, and seeking the Lord in this...

best of luck, and prayers to you in whatever you decide to do....you could always give it a shot it it's that important to you!

Sharron

HollyID · January 2016

Hi Sharron,

Me again.... I'll give you a bit of my history and just let you know what has happened with me...

I was first diagnosed with CRC in my sigmoid colon. Had an LAR with anastomosis. Did the FOLFOX regimen and for years thought I'd gotten away from cancer. In those six years, I have had bathroom issues. Visiting the bathroom anywhere from 5-20 times daily and living on Imodium.

Fast-forward to July of 2015 when I found out I had little recurrence. CEAs for the last 5 years weren't elevated at all not signaling anything amiss. Just centimeters from my rectum. On the outside. Just some leftover cells from the primary surgery that were left behind and decided to grow to their hearts content until the pain in my behind was so bad I had to find out what was going on. Biopsy confirmed it was CRC from the primary tumor.

Had my port replaced and I did the whole chemo radiation thing for 30 treatments. My prior surgeon wouldn't touch this tumor since was LOW in my pelvis. He sent me to a cancer center in another state. The surgeon there thought she would be able to leave my rectum alone since it wasn't touching the colon itself. She talked of just laparoscopically plucking the tumor out of my pelvis and sewing me back up. However, never in my mind did I think that this would be the case. Not with my tumor only being 2-3 cm. away from the rectum. In follow-up appointments, she kept reminding me she could do this.

The day before my scheduled surgery, she talked of giving me a temporary ileostomy and/or a colostomy with my surgery. She said there was still a chance to leave the rectum itself alone and that she would be able to just remove the tumor and leave the colon/rectum intact. I requested that she not do an ileostomy and that if she had to give me a stoma to make it a colostomy and make it permanent.

I woke up to a colostomy and I won't go into great detail, but I am so much happier with this than running to the bathroom every time I turned around. My quality of life has improved greatly and even though I'm only about 5 weeks post-op, I feel great and I'm so catching on to this stoma thing. It hasn't affected my home life. It hasn't affected the clothing I wear. Really, the only time I wish I didn't have one is when it "talks"... and it does that a lot. My husband and I laugh, and I'm sure I'm more self-conscious about the noises that come from it, but all in all, it's been a relief.

What really matters to me in the end is that she got all the cancer. I feel that she has and hoping I'm NED once again.

Sharronoffaith · January 2016

HollyID said:
Hi Sharron,
Me again.... I'll give you a bit of my history and just let you know what has happened with me...

I was first diagnosed with CRC in my sigmoid colon. Had an LAR with anastomosis. Did the FOLFOX regimen and for years thought I'd gotten away from cancer. In those six years, I have had bathroom issues. Visiting the bathroom anywhere from 5-20 times daily and living on Imodium.

Fast-forward to July of 2015 when I found out I had little recurrence. CEAs for the last 5 years weren't elevated at all not signaling anything amiss. Just centimeters from my rectum. On the outside. Just some leftover cells from the primary surgery that were left behind and decided to grow to their hearts content until the pain in my behind was so bad I had to find out what was going on. Biopsy confirmed it was CRC from the primary tumor.

Had my port replaced and I did the whole chemo radiation thing for 30 treatments. My prior surgeon wouldn't touch this tumor since was LOW in my pelvis. He sent me to a cancer center in another state. The surgeon there thought she would be able to leave my rectum alone since it wasn't touching the colon itself. She talked of just laparoscopically plucking the tumor out of my pelvis and sewing me back up. However, never in my mind did I think that this would be the case. Not with my tumor only being 2-3 cm. away from the rectum. In follow-up appointments, she kept reminding me she could do this.

The day before my scheduled surgery, she talked of giving me a temporary ileostomy and/or a colostomy with my surgery. She said there was still a chance to leave the rectum itself alone and that she would be able to just remove the tumor and leave the colon/rectum intact. I requested that she not do an ileostomy and that if she had to give me a stoma to make it a colostomy and make it permanent.

I woke up to a colostomy and I won't go into great detail, but I am so much happier with this than running to the bathroom every time I turned around. My quality of life has improved greatly and even though I'm only about 5 weeks post-op, I feel great and I'm so catching on to this stoma thing. It hasn't affected my home life. It hasn't affected the clothing I wear. Really, the only time I wish I didn't have one is when it "talks"... and it does that a lot. My husband and I laugh, and I'm sure I'm more self-conscious about the noises that come from it, but all in all, it's been a relief.

What really matters to me in the end is that she got all the cancer. I feel that she has and hoping I'm NED once again.

Thank you so much!

Hi Holly,

Thank you so much for your response! It is very helpful to me that you have shared your experience, and I feel much better after reading your story. And, I am very happy for you to hear you are doing so well, and I see it as very lucky that although you had a recurrence, it was not worse. This really makes me re-think about having the APR. I am hoping to see the chief of colorectal surgery at the hospital, and she has a special interest in low-lying rectal cancers. It is beginning to sound kinda risky to leave my plumbing there, and so I greatly appreciate your kindness in reaching out with your experience.

It sounds to me that you were much smarter than your surgeon in this decision! I am kinda surprised they would even suggest a small surgery.

I don't know much about the bag apparatus yet, but I have reached out to the folks at Coloplast, and they are sending me samples. I share that, as maybe a different bag system would help you. I just like that they had some light grey colored bags, as I was really turned off with that funky beige color. And, Coloplast has a two piece click lock system. If I need to, I will go with a mix of the throw away ones too. They were super nice on the phone, and I have a rep there who will follow up with me.

Thanks again Holly. I wish you the very best of health and happiness,

sharron

Helen321 · February 2016

I've had the APR. 3 years out

I've had the APR. 3 years out I'm so so. Okay with the ostomy at this point. Not sure of your age or circumstances. On my phone so can't read the thread. To be forward....Wish I had discussed......vaginal changes. Making things less "stiff" and more functional. Entrance size and structure matter a lot. Accessibility matters a lot. You not only remove the anus but future sex ( if this applies) needs to be considered. I have now lost this function due to poor "restructuring". I'm 46......ostomy placement. After radiation I was wearing sweats. The nurse rushed. Didn't listen about jeans or slacks, didn't care? I Dont care how "long I've been doing this job". Her words. It's my body. This is permanenet, bring a wafer and bag. Ask for one, she'll have one. Put it around her circle!!!!!! Bring sevetal styles of shorts and pants. Take your time. Does this placement work well with your clothes? VERY important.. depression is going to happen but it's normal. Very heavy at first but I promise it will get better. Seek help. Talk to a psychiatrist, sex therapist, patient counselor, go to a support group. Even a breast cancer support group. Losing breasts very similiar feelings. There are good days and bad like everything else. I hope it doesn't happen but if it does, you will be okay over time. 3 years later, that much I can promise. During is not easy at all. Keep your head up.

Surgery...rectal cancer surgery...probable apr...freaking out...eeekkkk

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