Anyone have Surgery success with tumor at the internal sphincter ?

Posted by svevere @svevere, May 31, 2023

Was curious if anyone has had any success in surgery that is near the internal sphincter? Recently diagnosed with stage 1 rectal cancer that is 2cm from anal verge. I’m on my second round of FolFox chemo. Hoping for a wait and watch but not sure is surgery is ultimately inevitable. Would love to retain all my body parts and normal functions but with location the DR said it doesn’t look promising.

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@salynn

I actually just started the chemo and radiation yesterday. I am working on putting together an arsenal of supplies. All of your recommendations are very much appreciated. How far into the process did the worst of the side effects begin?

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Greetings, salynn -

I had anal cancer stage 3C in the past and suffered through chemotherapy (5FU & Mitomycin) in addition to radiation. And I do mean "suffered". Radiation made my whole bikini area a dead-black color with pain, cracking, bleeding, and interior pain.

If it's not too late to make suggestions, completely forget toilet paper. Even the White Cloud super-pricy soft toilet paper will feel like sandpaper. I also say forget baby wipes as they, too, are far too harsh.

The thing that got me through was a product by the Sage company - "Comfort Shield Barrier Cream Cloths". They are silicone-coated and are cool and soothing when you wipe with them. I still use them when diarrhea becomes too much to bear (I have microscopic colitis that the radiation really exacerbated).

If you get the bigger sized ones, 8.5 x 9, you could cut them in half, even in quarters, and still get great benefit from them.

All the best.

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@dilemma6

Cyst bath was a life saver for me, along with keeping aquafore on my skin. Could not use the aquafore in the vagina area as it caused me to get a urinary tract infection. I had my doctor prescribe me with mupirocin cream. It was a life saver as well. No tight clothes. And when you are under chemo treatment make sure if possible your urine does not touch any other parts of your body. It will burn and cause lots of pain. Wipe with wet wipes. I know it will be hard but try and drink lots of fluids and eat when ever you get hungry. I was eating every 3 hours. I lost around 15 lbs. I did not lose all my hair but every time I brushed it I would have to clean my brush out. It really got thinned out. I had thick hair. My tastebuds changed and food tasted terrible or had no taste at all. It was miserable but I got through it with lots of tears. Have your doc prescribe you with anxiety meds and pain meds. You will need both! Good luck and will be praying for all going through this dreadful cancer!

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Greetings, dilemma6,

You mean "sitz bath".

Wet wipes were too harsh for me. I used Shield Barrier Cream Cloths. Otherwise, I don't think I would have lived through all that radiation. >_<

My skin couldn't take the lanolin in Aquaphor, so I used Albolene.

"My tastebuds changed and food tasted terrible..." - - - I SO know what you mean. I have not been able to get back to drinking water ever since. I also had a nasty side effect where many odors would cause a sudden, overwhelming, incapacitating nausea and vomiting. Some foods, cleaning products, plastics, alcohol wipes, and the elderly uncle's diapers. I used to have to call my partner at work to drop everything to come and change The Uncle when needed.

A nurse told me to buy PEPPERMINT OIL (not peppermint flavoring from supermarkets) and keep it close to my nose to mask those reactive odors And it really worked, thank goodness!

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@terrydalecasino

TES, I DID, IN FACT THE HIGHLY SKILLED SURGEON I HAD REMOVED (15) FIFTEENE CENTIMERS TOTAL OF ANUS AND ENTIR RECTUM AND A FEW MILIMETERS OF THE SIGMOD COLON; WHERE THE ACTUAL CANCER WAS. BUT WHEN I HAD MY FIRST COLONOSCOPY AT AGE 63 ALOT HAD GONE WRONG AND NOW I'M PAYING FOR IT, I NOW HAVE TO WEAR A COLOSTOMY BAG FOR THE REST OF MY LIFE.
YOU'RE NOT ALONE?

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I was diagnosed with anal cancer in 2022. I completed 6 weeks of chemo and radiation in Dec. My first colonoscopy after treatment showed half of the cancer was gone. Doctors were optimistic that the rest of it would be gone by the sixth month mark. Today I found out that it is not gone and had grown a bit. I now have an appointment in July with a surgeon for a biopsy. The additional growth could be scar tissue or damage from radiation. Most likely, the way the scan lit up , it’s cancer. They may recommend immunotherapy or surgery. Surgery means a colostomy. I’m very scared. Can you share your experience with me? What was the surgery like? Recovery?

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@rioa21

I was diagnosed with anal cancer in 2022. I completed 6 weeks of chemo and radiation in Dec. My first colonoscopy after treatment showed half of the cancer was gone. Doctors were optimistic that the rest of it would be gone by the sixth month mark. Today I found out that it is not gone and had grown a bit. I now have an appointment in July with a surgeon for a biopsy. The additional growth could be scar tissue or damage from radiation. Most likely, the way the scan lit up , it’s cancer. They may recommend immunotherapy or surgery. Surgery means a colostomy. I’m very scared. Can you share your experience with me? What was the surgery like? Recovery?

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Terry I haven't been that far, but I pray that God🌹 will take care of you and everything will go well. Please rest in Him🌹. In Jesus Christ🌹Name. Amen🌹

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@rioa21

I was diagnosed with anal cancer in 2022. I completed 6 weeks of chemo and radiation in Dec. My first colonoscopy after treatment showed half of the cancer was gone. Doctors were optimistic that the rest of it would be gone by the sixth month mark. Today I found out that it is not gone and had grown a bit. I now have an appointment in July with a surgeon for a biopsy. The additional growth could be scar tissue or damage from radiation. Most likely, the way the scan lit up , it’s cancer. They may recommend immunotherapy or surgery. Surgery means a colostomy. I’m very scared. Can you share your experience with me? What was the surgery like? Recovery?

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I am in a similar situation. I have been on chemo since November 2022 and had 6 weeks of radiation in between. I have completed my chemo and radiation so I had a colonoscopy last week and am waiting for the results. I don't know if I have a colostomy bag in my future but that would be a difficult situation to come to terms with. In the meantime, I wait for the surgeon to call to let me know. Keep strong, we can do this.

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@briancl

I am in a similar situation. I have been on chemo since November 2022 and had 6 weeks of radiation in between. I have completed my chemo and radiation so I had a colonoscopy last week and am waiting for the results. I don't know if I have a colostomy bag in my future but that would be a difficult situation to come to terms with. In the meantime, I wait for the surgeon to call to let me know. Keep strong, we can do this.

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I’m hoping that my next option is Immunotherapy. The thought of surgery is difficult to come to terms with. I feel so defeated. Being positive hasn’t gotten me anywhere. I know a colostomy isn’t the end of the world…but still…

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@rioa21

I was diagnosed with anal cancer in 2022. I completed 6 weeks of chemo and radiation in Dec. My first colonoscopy after treatment showed half of the cancer was gone. Doctors were optimistic that the rest of it would be gone by the sixth month mark. Today I found out that it is not gone and had grown a bit. I now have an appointment in July with a surgeon for a biopsy. The additional growth could be scar tissue or damage from radiation. Most likely, the way the scan lit up , it’s cancer. They may recommend immunotherapy or surgery. Surgery means a colostomy. I’m very scared. Can you share your experience with me? What was the surgery like? Recovery?

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Dear rioa21,
First, let me tell you that I too was terrified. When the gastrointerologist first showed my 3-D ct scan my first reaction was he was showing me the wrong ct scan? However, he assured me I was viewing the right scan. I had a MASSIVE GROWTH that started and looked like ROOTS extending from my sigmiod colon and a what I called a huge POLYP in my rectm and extended all the way down to my anus. The POLYP ITSELF WAS NOT CANCEROUS, BUT THE ROOTS STARTING AT THE SIGMIOD WERE!!! So after consulting with the surgeon he told me that if I didn't remove everything the cancer would spread to the POLYP AND MAKE THINGS WORSE? SO HE REMOVED EVERYTHING!! The hardest part for me to understand was, OK, if you remove all that stuff, how am I going to discharge my fecal matter???? Thats when he explaind that I am going to have to have a STOMA STICKING OUT OF MY STOMACH! MY FIRST RESPONSE WAS, OK, BUT FOR HOW LONG, THATS WHEN HE DROPPED THE BOMBSHELL? He said I'm very SORRY to tell you this, but IT will be permanent. Thats when I thought to myself, AM I GOING TO BE ABLE TO DEAL WITH THIS? Then he suggested that I look at videos of people who also have a colostomy? After looking into it and having EXTRAORDINARY SUPPORT from nurses who are especially trained in wound care, I guess recovery? Because they KNOW how big a change of life it is for you? AS FAR AS THE SURGERY IT REALLY WAS'NT ALL THAT BAD? THERE WAS A LOT OF PAIN IN THE BEGINING, BUT THEY, THE SURGEON PRESCRIBES STRONG PAIN KILLING MEDICATION. AS FAR AS RECOVERY, MY BIGGEST PROBLEM WAS I KEPT FORGETTING I COULD'NT SIT STRAIGHT DOWN. I ALWAYS HAD TO EXPLAIN TO PEOPLE I HAVE TO SIT ON MY SIDE. WHETHER IT BE MY RIGHT SIDE OR MY LEFT?
Now getting used to the bag? I had my surgery 1/11/21 and to be perfectly honest and candid with you, I still have trouble dealing with the bag. There are certain foods that I can NO LONGER EAT? ANOTHER ISSUE I HAVE IS I TIRE MUCH MUCH SOONER THAN BEFORE! I WAS A FAIRLY ACTIVE PERSON BEFORE ALL OF THIS BUT NOW IT JUST SEEMS LIKE I CAN'T DO WHAT I USED TO DO. IT CAN BE VERY DEPRESSING AND DISCOURAGING. BUT ILOOK AT IT THIS WAY!!!! AT LEAST I'M STILL ALIVE?????
It is OK to be frightened and scared, I was too? But you learn to TAKE ONE DAY AT A TIME? AND DON'T DO WHAT I DID! TRY TO HURRY THINGS, IT'S NOT GOING TO WORK? ALL YOU DO IS GO THROUGH MORE UNNECESSARY PAIN. Because then you get mad and it takes longer to heal. And above all, DO WHAT THE DOCTORS AND NURSES TELL YOU, THEY ARE HIGHLY SKILLED AND TRAINED PROFESSIONALS. THEY HAVE ALL TAKEN THE HIPPOCRATIC OATH!!!!!!!!!! "FIRST DO NO HARM".
With that said, just remember ONE thing, " GOD" will always watch over you and help and guide you through the most challanging times in your life.
GOOD LUCK WITH EVERYTHING AND ALWAYS LOOK AT THE CUP AS HALF "FULL" INSTEAD OF HALF EMTY, "GOD BLESS"
P.S. I WILL PRAY FOR YOU DAILY!! YOU CAN AND WILL GET THROUGH THIS!!!!!!

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@terrydalecasino

Dear rioa21,
First, let me tell you that I too was terrified. When the gastrointerologist first showed my 3-D ct scan my first reaction was he was showing me the wrong ct scan? However, he assured me I was viewing the right scan. I had a MASSIVE GROWTH that started and looked like ROOTS extending from my sigmiod colon and a what I called a huge POLYP in my rectm and extended all the way down to my anus. The POLYP ITSELF WAS NOT CANCEROUS, BUT THE ROOTS STARTING AT THE SIGMIOD WERE!!! So after consulting with the surgeon he told me that if I didn't remove everything the cancer would spread to the POLYP AND MAKE THINGS WORSE? SO HE REMOVED EVERYTHING!! The hardest part for me to understand was, OK, if you remove all that stuff, how am I going to discharge my fecal matter???? Thats when he explaind that I am going to have to have a STOMA STICKING OUT OF MY STOMACH! MY FIRST RESPONSE WAS, OK, BUT FOR HOW LONG, THATS WHEN HE DROPPED THE BOMBSHELL? He said I'm very SORRY to tell you this, but IT will be permanent. Thats when I thought to myself, AM I GOING TO BE ABLE TO DEAL WITH THIS? Then he suggested that I look at videos of people who also have a colostomy? After looking into it and having EXTRAORDINARY SUPPORT from nurses who are especially trained in wound care, I guess recovery? Because they KNOW how big a change of life it is for you? AS FAR AS THE SURGERY IT REALLY WAS'NT ALL THAT BAD? THERE WAS A LOT OF PAIN IN THE BEGINING, BUT THEY, THE SURGEON PRESCRIBES STRONG PAIN KILLING MEDICATION. AS FAR AS RECOVERY, MY BIGGEST PROBLEM WAS I KEPT FORGETTING I COULD'NT SIT STRAIGHT DOWN. I ALWAYS HAD TO EXPLAIN TO PEOPLE I HAVE TO SIT ON MY SIDE. WHETHER IT BE MY RIGHT SIDE OR MY LEFT?
Now getting used to the bag? I had my surgery 1/11/21 and to be perfectly honest and candid with you, I still have trouble dealing with the bag. There are certain foods that I can NO LONGER EAT? ANOTHER ISSUE I HAVE IS I TIRE MUCH MUCH SOONER THAN BEFORE! I WAS A FAIRLY ACTIVE PERSON BEFORE ALL OF THIS BUT NOW IT JUST SEEMS LIKE I CAN'T DO WHAT I USED TO DO. IT CAN BE VERY DEPRESSING AND DISCOURAGING. BUT ILOOK AT IT THIS WAY!!!! AT LEAST I'M STILL ALIVE?????
It is OK to be frightened and scared, I was too? But you learn to TAKE ONE DAY AT A TIME? AND DON'T DO WHAT I DID! TRY TO HURRY THINGS, IT'S NOT GOING TO WORK? ALL YOU DO IS GO THROUGH MORE UNNECESSARY PAIN. Because then you get mad and it takes longer to heal. And above all, DO WHAT THE DOCTORS AND NURSES TELL YOU, THEY ARE HIGHLY SKILLED AND TRAINED PROFESSIONALS. THEY HAVE ALL TAKEN THE HIPPOCRATIC OATH!!!!!!!!!! "FIRST DO NO HARM".
With that said, just remember ONE thing, " GOD" will always watch over you and help and guide you through the most challanging times in your life.
GOOD LUCK WITH EVERYTHING AND ALWAYS LOOK AT THE CUP AS HALF "FULL" INSTEAD OF HALF EMTY, "GOD BLESS"
P.S. I WILL PRAY FOR YOU DAILY!! YOU CAN AND WILL GET THROUGH THIS!!!!!!

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Thank you so much for your response. You’ve made me feel a bit better! I will take one day at a time. I see the surgeon on July 13th. I will have to have a biopsy to confirm that it is more cancer and not scar tissue or inflammation from radiation. I am hoping that I will be a can for Immunotherapy. I’ll cross that bridge if and when I get there. Again, thank you for you advice it has helped me!

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@rioa21

I’m hoping that my next option is Immunotherapy. The thought of surgery is difficult to come to terms with. I feel so defeated. Being positive hasn’t gotten me anywhere. I know a colostomy isn’t the end of the world…but still…

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I had a call from my surgeon. It seems that the chemo and radiation has worked for me. He said he found no sign of cancer in the colonoscopy that I had a week ago. He will check again in 6 weeks (another colonoscopy?) to make sure. I had 12 chemo sessions and 6 weeks of radiation every day.

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@pkanders52

Here is the list I used.
Aveeno baby wipes
Purist form of aloe Vera
High protein with fiber shakes. I used Atkins version!
Ionized/Alkaline filter with water bottle. Drink lots of water!
Anti gas pills
Keep your skin well moisturized with a good lotion!
I have 8 more treatments of chemo/radiation left out of 30 treatments days! Yeah me. I have had minimal side affects so far! Hope this helps

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pkanders52,
are you in trial where they do half chemo and half radiation? or are you doing negro protocol?
what kind of radiation photon or proton? where?
is -was- your cancer on your sphincter muscle?
so glad to hear you are doing well. you must be finished by now. how was your outcome?

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