Rectal cancer

[_Jelen90]

Hi everyone,

My husband has been diagnosed with rectal cancer over the Christmas Holidays. I'm not gonna lie to you it was a complete shock. He is a very healthy and active 28 year old young man. We have a beautiful 2 year old daugter and 2nd baby coming in June.

We live in Edmonton, Alberta and are extremily lucky we got in with the best colorectal surgeon in the province. We met with him last Monday and the good news is that the cancer hasn't spread anywhere, it's T2N1M0 from my understanding it's stage 2? Anyways when he first saw the reports from the colonoscopy, MRI Etc, he said the tumor is low in the rectum, he will most likely need a permanant stoma. But after he actually physically examined him and felt the tumor he said that it's higher and smaller than what the reports said and there might be a chance he will not need a permenant bag (about 20%). He will go for 6 weeks of intensive chemoradiation 6 days/week and surgery most likely 6-8 weeks after that. The doctor said if we has a good response from the treatment and if the surgery goes exacly as planned he might be able to "reattach" everything together.

Anyways, I would like to hear from ppl who went through someting similar. I am just looking for some kind of advice, reassurance or just hear your story.

Thank you!!

[Nohogirl]

Hello,

Welcome and sorry for the reason you are here. I was in your shoes in April of 2018. It was a total devastation, shock to us and i never thought i would be able to pull through it. But overtime, as we were going through every stage of the process things became more clear, and we became more optimistic. My husband was also diagnosed with stage 2 rectal cancer, went through 28 days of chemoradiation 8 weeks of wait, surgery, and more chemo thereafter. Although, my husband did not have a complete pathological response as some people here did, his tumor size was reduced by more than half. Before my husband's surgery the surgeon was almost sure my husband would need a temporary stoma, but luckily my husband came out of his surgery without it. According to his urgeon, my husband's colon was very flexible and he was able to reconnect it after cutting 24 cm of his colon/rectum.
So i guess, whether your husband will have a "bag" or not will depend on how much his tumor shrinks and how comfortable will his surgeon feel reconnecting it back without a bag.
Hope things get better for you and your husband.

[retiredteacher]

Hi there!

Welcoming you aboard. From my experience, this is the best place to be - for good informative discussions and support. ThInk about constructing a signature soon - it will be easier for folks to help you and offer their experiences, advice, or even links and articles. Even if you have the best docs, you can pick up a wealth of information here, and the members are wonderful.

More good news is that you have the best colorectal surgeon in your province! Most folks here would say that's the most important first step. Reassurance - sounds like you have a good plan going forward and a curable earlier stage - so every reason to be optimistic! More good news is that you found this place very early in your process - checking in along the way will just anchor your knowledge, confidence, and outlook. (Trust me! LOL!)

Again, welcome!

[Gravelyguy]

Welcome!

My tumor was very low, less than a cm from the anal verge at dx. I saw two local surgeons who both said bag for life.

When the scans and biopsy of my liver came back positive for Mets, I was referred to Mayo Clinic. They had me see one of their colorectal surgeons as they like to do simultaneous resections if possible. He gave me the same same speech as your husband got that there is a chance that they might be able to reattach if I responded well to chemo.

As it turns out I did respond well and he was able to reattach my colon. I had a temporary Ileostomy during mop up chemo. I did not like it but I know I could have lived with it as long as it meant I had more time to be with my family.

There have been some ups and downs with the reattachment too but all in all it is very doable.

Glad you got to a good surgeon. Have they tested for Kras/Braf mutations? I was negative for them and so had Vectibix which did amazing things to the tumor. It went from 3cm to .1 cm and my liver Mets were dead as well.

Dave

[_Jelen90]

Welcome!

My tumor was very low, less than a cm from the anal verge at dx. I saw two local surgeons who both said bag for life.

When the scans and biopsy of my liver came back positive for Mets, I was referred to Mayo Clinic. They had me see one of their colorectal surgeons as they like to do simultaneous resections if possible. He gave me the same same speech as your husband got that there is a chance that they might be able to reattach if I responded well to chemo.

As it turns out I did respond well and he was able to reattach my colon. I had a temporary Ileostomy during mop up chemo. I did not like it but I know I could have lived with it as long as it meant I had more time to be with my family.

There have been some ups and downs with the reattachment too but all in all it is very doable.

Glad you got to a good surgeon. Have they tested for Kras/Braf mutations? I was negative for them and so had Vectibix which did amazing things to the tumor. It went from 3cm to .1 cm and my liver Mets were dead as well.

Dave

Thats awesome Dave !!! I am glad you are doing well . How did you do with Chemoradiation ? Did you have lots of side effects ? The doctor said there should not be any major side effects as this type of chemo is usually well tolerated compared to the ones they give for other types of cancer.

[del]

So sorry for the reason you're here. 28 is such a young age to get this dreadful disease. Given your husband's age, I would strongly recommend you ask about genetic testing. Also, all of his first-degree relatives should have colonoscopies done.

I had an ultra-low tumour. Initially the surgeon thought I may need a permanent bag, but he was able to reattach it when he got in there and saw for himself. Having said that, having a bag is not the end of the world. I got used to it pretty quickly and really, it's a small price to pay.

To clarify what T2N1M0 means, the T is a number from 1 to 4 that indicates how deep the tumour has penetrated the colon wall. The T number is not the same thing as stage. N1 means that at least one lymph node near the tumour is suspected to be cancerous. As your husband has not had an operation yet, they would have determined this by looking for enlarged lymph nodes on the MRI. Having N1 means your husband is stage 3. M0 means there are no suspected metastises to other organs. You can read more info about it here, scroll down to the "staging" section:
viewtopic.php?f=1&t=5366

[Gravelyguy]

I responded so well to 4 rounds of chemo that I only had short course radiation which is 5 days of radiation at a higher dosage. I had surgery just a few days after radiation was done so no real side affects that I could attribute to the radiation.

There are some recent threads about radiation that you guys should read that should be helpful.

Dave

[Jachut]

I was diagnosed with a low rectal tumour in 2010 at the age of 42. I've so much gotten on with my life that I barely visit here anymore.

I was T2N0M0, had a complete response to radiation, had surgery and 6 months of chemo and have had all clean colonoscopies since.

However, I'd say it had a fairly big impact on my overall wellbeing and health, apart from the obvious stress and trauma of treatment. I have a permanent colostomy. I had a lot of post radiation damage which became worse over the two years following my reconnection. I could have managed with a daiy enema but I didnt want to have to. Having a bag was my choice and its a better one for me than coping with bad bowel function. I want to work full time as a teacher and I could not have done it without a colostomy.

I also think I have a permanent fatigue problem. I went into surgery extremely fit and I have never recovered fully. I'm now 52 so I guess slowing down is going to happen but its a struggle for me to work full time, I just get too tired. But other than that, I'm happy, relatively healthy and cancer was looooong ago. I dont think about it much nowadays. But it took time to get there!