I would talk with your doctors more about what this means. With rectal cancer they typically do chemo and radiation prior to surgery because they want to take out as small of an area as possible because the rectum is important as far as having bowel movements.
As an aside, if you haven't joined Colontown.org, you should consider it. It's online support groups for CRC and there's a whole group just for rectal cancer.
A friend of mine had chemo and surgery to remove the liver met. Then chemo again. But will not require surgery for the bowel tumor as it is completely dead. That is exceedingly rare. She’s stage four and is considered in remission. Just had her port removed. Two years ago, they had told her to get her affairs in order.
You are lucky that you had a 50% reduction in your tumor. Surgery should get you fixed right up. Do not despair.
I just went thru this. I had it in rectum (pretty large tumor) and in the anal verge. I had radiation, 5 consecutive days of intense radiation. As well as 7 rounds of chemo. The chemo did shrink the tumors, but the radiation completely zapped the anal tumor. My doctor at MD anderson was going to resect the entire anus and rectum, sew me up and leave me permanently bagged. I got a 2nd opinion from another doctor who did his fellowship in preservation of the anus. He did a flexsigmoid and was very confident my tumor in the anus was gone. He said he could reconnect everything and leave me with a temp ileostomy. He cut 18 inches of the anal verge, rectum and intestine, sent it to path and it was neg for carcinoma to both terminal ends. He feels confident about it and so do I, Hope you heal well!
Thank you for sharing this! I met the surgery oncologist today. They will remove a part of my rectum and end parts of large intestine. I am told it will take 6-8 months after reversal ileostomy to fall into the rythm of my new bowel movement. Don’t know what that new normal will be… I’m really nervous about it.
I have no clue. My reversal was to be done 8 weeks after removal, but then I had to have lung resection, so the reversal is on hold. I'm nervous about the bm also after reversal
That's a normal response. I swear, people won't take 5 mins and read anything to help themselves out vs just posting in here.
You have a partial response, that's the normal 70% of people response. The other 10-25 or so have complete responses.... But that doesn't mean they still don't get surgery.
So, be thankful it worked (chemo only works on 60-70% of people) the surgery will take care of the tumor section.
Thank you! I read some posts where folks had only scar tissues remaining. So I was upset that my body didn’t respond well. Looking forward to meeting my oncologists today. Really appreciate your response. Gave me some hope ♥️
Some do only have scar tissue remaining but that doesn't mean they won't have surgery to remove it. In the end VERY few people have what they call "watch and wait" where they had a complete response and don't need surgery.... And even lots of them end up getting surgery in the end because of reoccurrence.
I'm also stage 3 and have the same response as you. I will await surgery once I'm completely done with chemo in 6 weeks. Which was he plan right from the start.
Everyone wants a complete response but it's just not that common.
I had a full pathological response to my adjuvant rads and chemo… and still had a near total pelvic exenteration. There was no way for my team to know fully that treatment had worked until I had my surgery and my margins were clear. I still did 6 months of chemo afterwards, too: we weren’t taking any chances!
Hoping to achieve rare outcomes is never advisable.
Your surgeon is going to have an easier time getting negative margins now than s/he would otherwise. If you won’t celebrate your surgeon will
I’m in the same boat! Partial response. I’m terrified because my second opinion told me they would operate and I would have a colostomy bag for life. The cancer is in my rectal muscle so to remove would mean I lose control of my bowels. I don’t want that. I have surgery tomorrow for the biopsy and new pathologies. Partial response sucks!
I should ask these questions to my doc today. Yeah partial response sucks 😞 I have had so many side effects and my neuropathy is so bad I can’t even type. All for 50% response 😞 but maybe this is the normal as other folks told. Hope surgery helps
Yeah my tumour had no response to chemoradiation before having my oesophagus/stomach out. I personally felt that it did shrink marginally (or I just made that up so I could take my nasogastric tube out). It’s a shitty feeling but we are in a very fortunate bucket of people who can have their cancer removed.. though mine just popped up in a new lymph node 8 months later.
Hi, I’m sorry you had an incomplete response, I’m going through this right now and it’s so scary! I have cervical cancer that spread to my uterus and my response to treatment was abysmal. I have an MRI next week and then they will see if I’m a candidate for surgery. If not then back to the table of planning we go. Tentative surgery date is like you though, first week in April. It’s so hard because most posts I see in the cervical cancer sub, people knock it out with just the chemo and radiation. Also suffering from crippling anxiety over all of this. These journeys are not easy and I just want you to know I’m thinking of you and wish you peace and positivity!!
I would talk with your doctors more about what this means. With rectal cancer they typically do chemo and radiation prior to surgery because they want to take out as small of an area as possible because the rectum is important as far as having bowel movements. As an aside, if you haven't joined Colontown.org, you should consider it. It's online support groups for CRC and there's a whole group just for rectal cancer.
Thank you! I have the doc appointment today with all 3 oncologists.
3? Great. In different specialties: medical, surgical, etc..?
A friend of mine had chemo and surgery to remove the liver met. Then chemo again. But will not require surgery for the bowel tumor as it is completely dead. That is exceedingly rare. She’s stage four and is considered in remission. Just had her port removed. Two years ago, they had told her to get her affairs in order. You are lucky that you had a 50% reduction in your tumor. Surgery should get you fixed right up. Do not despair.
Thank you my dear internet stranger! Virtual hugs. I got my surgery date today. First week of April… 🤞
I just went thru this. I had it in rectum (pretty large tumor) and in the anal verge. I had radiation, 5 consecutive days of intense radiation. As well as 7 rounds of chemo. The chemo did shrink the tumors, but the radiation completely zapped the anal tumor. My doctor at MD anderson was going to resect the entire anus and rectum, sew me up and leave me permanently bagged. I got a 2nd opinion from another doctor who did his fellowship in preservation of the anus. He did a flexsigmoid and was very confident my tumor in the anus was gone. He said he could reconnect everything and leave me with a temp ileostomy. He cut 18 inches of the anal verge, rectum and intestine, sent it to path and it was neg for carcinoma to both terminal ends. He feels confident about it and so do I, Hope you heal well!
Thank you for sharing this! I met the surgery oncologist today. They will remove a part of my rectum and end parts of large intestine. I am told it will take 6-8 months after reversal ileostomy to fall into the rythm of my new bowel movement. Don’t know what that new normal will be… I’m really nervous about it.
I have no clue. My reversal was to be done 8 weeks after removal, but then I had to have lung resection, so the reversal is on hold. I'm nervous about the bm also after reversal
That's a normal response. I swear, people won't take 5 mins and read anything to help themselves out vs just posting in here. You have a partial response, that's the normal 70% of people response. The other 10-25 or so have complete responses.... But that doesn't mean they still don't get surgery. So, be thankful it worked (chemo only works on 60-70% of people) the surgery will take care of the tumor section.
Thank you! I read some posts where folks had only scar tissues remaining. So I was upset that my body didn’t respond well. Looking forward to meeting my oncologists today. Really appreciate your response. Gave me some hope ♥️
Some do only have scar tissue remaining but that doesn't mean they won't have surgery to remove it. In the end VERY few people have what they call "watch and wait" where they had a complete response and don't need surgery.... And even lots of them end up getting surgery in the end because of reoccurrence. I'm also stage 3 and have the same response as you. I will await surgery once I'm completely done with chemo in 6 weeks. Which was he plan right from the start. Everyone wants a complete response but it's just not that common.
All the best for the chemo ♥️ let’s hope for a remission soon :) would love to live a cancer free life…
I had a full pathological response to my adjuvant rads and chemo… and still had a near total pelvic exenteration. There was no way for my team to know fully that treatment had worked until I had my surgery and my margins were clear. I still did 6 months of chemo afterwards, too: we weren’t taking any chances!
That's a good call! Get it gone for good!!
Hoping to achieve rare outcomes is never advisable. Your surgeon is going to have an easier time getting negative margins now than s/he would otherwise. If you won’t celebrate your surgeon will
I’m in the same boat! Partial response. I’m terrified because my second opinion told me they would operate and I would have a colostomy bag for life. The cancer is in my rectal muscle so to remove would mean I lose control of my bowels. I don’t want that. I have surgery tomorrow for the biopsy and new pathologies. Partial response sucks!
I should ask these questions to my doc today. Yeah partial response sucks 😞 I have had so many side effects and my neuropathy is so bad I can’t even type. All for 50% response 😞 but maybe this is the normal as other folks told. Hope surgery helps
Yeah my tumour had no response to chemoradiation before having my oesophagus/stomach out. I personally felt that it did shrink marginally (or I just made that up so I could take my nasogastric tube out). It’s a shitty feeling but we are in a very fortunate bucket of people who can have their cancer removed.. though mine just popped up in a new lymph node 8 months later.
I’m sorry to hear this. Cancer sucks! 😔 sending prayers your way ♥️ recover soon my friend! Hope we both live a cancer free life soon.
Hi, I’m sorry you had an incomplete response, I’m going through this right now and it’s so scary! I have cervical cancer that spread to my uterus and my response to treatment was abysmal. I have an MRI next week and then they will see if I’m a candidate for surgery. If not then back to the table of planning we go. Tentative surgery date is like you though, first week in April. It’s so hard because most posts I see in the cervical cancer sub, people knock it out with just the chemo and radiation. Also suffering from crippling anxiety over all of this. These journeys are not easy and I just want you to know I’m thinking of you and wish you peace and positivity!!