Sorry to be here but may I join you?

[jean60]

Hello all.
I have been reading and learning here for a few weeks now and I am quite sure you all understand that I am indeed sorry to be here. But if I have to have this thing, this seems to be a great place to come for information and support, so as I said...May I join you?
I was dxd with a very low rectal cancer in May and finished 5 weeks of chemo/radiation in early July and am scheduled for surgery next week. I was orginally told that it was virtually certain I would have a permanent colostomy. However, after a scope exam and a CT scan (both performed after some post radiation healing) I am told I MAY be able to have a temporary.
That brings me to a question I would like to ask. If someone responds very well to radiation/chemo done before the surgery, does it really change anything? Don't get me wrong, I am very glad it went this way. I sat there with my onc and he showed me the CT and said nothing shows up now. Nothing. But I understand I still have to have surgery and I am told I will need adjuvant chemo, although perhaps a FEW fewer treatments due to this response.
I guess I am just confused. I bet that shows. It's gone. It's not gone. It's good news; they are thrilled. But nothing changes.
Bottom line? I am scared. And this is a first post and I am rambling and I apologize. I have come here before as I said and I have read posts that informed me, made me smile and dropped my head into my hands weeping.
Thank you in advance.

[WorriedWife]

Dear Jean,

I am sorry you have to be here too. I have been here over a month now and have learned so much. I am sorry, but I don't know a lot about your situation as I am not knowledgeable in rectal cancer as my hubby has colon cancer. I do know that here are tons of people here with the same dx as you have and they will be around shortly to help you out.

I just wanted to say hi, as I know what it means to be new. Everyone here is so nice and so welcoming. Oh, and I want to add smart too!! So, so many intelligent people here that know sooo much! I wish you the very, very best with your upcoming surgery.

PS..I do know though that sometimes Dr's do not really lay out a plan set in stone as things change along the way at times...or I guess I should say too, that sometimes they do lay out a plan and things can change

[Surroundedbylove]

Hello and welcome to the forum.

YOu are right that a complete response or near complete response doesn't change the treatment protocol for us stage III patients - still surgery and adjuvant chemo. BUT, if the pathology after your surgery does show complete response or near complete response it is a VERY good prognostic marker in rectal cancer patients. That's encouraging news if confirmed after your surgery (CT scan helps, but pathology is the important thing here).

I know the treatment for rectal cancer is long, hard to sometimes cope with, and scary but know that many people have dealt with - just take it day by day.

Hang in there.

SBL

[WorriedWife]

Jean - by the way, I meant to add this..... Do not worry about rambling, some of us ramble and vent at times!

[Phuong]

Welcome Jean. Tumors have to be of a certain size to be seen on scans, so surgery and mop-up chemo is pretty standard protocol. There are certainly pros and cons of having an ostomy, but you'll find that as with all things new, you'll get the hang of it - it just takes some time to get used to. There are lots of tips and tricks that can be found on the forum. We're here to help in any way that we can.

[pog451]

Welcome, (unfortunately) to the club. Im about 6 months ahead of you - Radio/chemo last year, LAR in January, finished active chemo in June. My Tumor responded well to radio/chemo going from 3cmx1cm to 6mm by the time they took it out. Like you, I am Stage III - Clinically IIIb, pathologically IIIa. Although It wont (and shouldn't) chnage your treatment even if you drop a whole stage, there is some thought that an "improved" clinical staging increases your prognosis. There is only hard data for "copmplete response" cases, like yours may be, and they are significantly positive with regard to prognosis, at elast as far a local recurrence goes.

As far as Ileo goes - my tumor was as low as you can go without a premanent ostomy being required and I only had my ileo for a few weeks because of complications but the ex perience I had was not at all ba d- you can get used to it and live with it. Most people with permanent ostomies seem to do even better.

Good luck, hang in there. The future looks bright for stage IIIs.

[Georgie]

He Jean, welcome to the club...

I had the temporary ilio for 3 months after my surgery for a low rectal cancer... Not fun by any stretch but I just kept telling myself it was a means to an end and it was necessary for a time. You do get used to it but I can't say I liked it...

The surgery is still necessary after chemoradiation for us stage III patients as the others have said. There can be a small amount left behind that the scans can't see - you don't want to have them hanging around! For example, I had a complete metabolic response (clear PET, CT etc) after chemo and RT. When it got to surgery I still had some microscopic evidence of disease left there. I'm sure glad it's gone now!

They have to remove a certain amount of bowel based on blood supply to it, if they take a portion of the 'section' the remaining in that 'section' will die. The iliostomy comes in to give the anastomosis (where it is joined back up) time to heal. With low tumors, requiring full removal of the rectum, there is a much larger chance of leakage (within the body of fecal matter - BAD!) without the iliostomy.

The adjuvant chemo for rectal cancer is usually just 5-FU (or Xeloda - the pill form). This is often well tolerated - and you don't usually get the endless diarrhea that comes with RT! It is just to "mop up" any cancer cells that might have escaped the surgeons knife. I ended up having a post op infection so I didn't have any adjuvant chemo - I was too sick. Things are always negotiable. Talk to you onc about your concerns you may be able to come to a compromise.

But the most important thing is to get that cancer GONE! Having a complete/near complete response to the neo-adjuvant treatment is awesome, it is a really good prognostic factor.

I wish you well.

Georgie

[lepperl]

Welcome Jean, Sorry you are here but glad you found us. This forum has been a God send for me and I hope it will help you too. Your good response is great. Unfortunatly it does not change your treatment plan but it is a sign there is light at the end of the tunnel. Keep fighting! We are here to support you.
Lori

[jean60]

Thank you all so much for your responses! This is a welcoming place to be and I am so glad to have found it.

Georgie, you mentioned that adjuvant chemo is usually just 5FU or Xeloda. I had 5FU infusion with the pump 24/7 for 5 weeks and my oncologist has told me from the beginning that my adjuvant chemo would be three drugs (one of them a helper drug, it seems...does that make sense?) I also know one of them is the one that causes peripheral neuropathy and I have no memory of what the other one is. I am sure I have been told, but I think chemo brain is a very real issue with me. Is this probably just a difference in docs and their particular treatments?

[elise]

Hi Jean

We're all sorry we're here! But there are days I'm very very grateful for the lessons I've learned from cancer. Just wish I'd learnt them another way

I have no experience with your situation regarding colostomies and adjuvent therapy when radiation goes well (I've had neither of these events in my care) but I wanted to give you my good wishes

You'll get through this!

[annalexandria]

Hello and welcome to the club! I certainly wish you didn't have to join us, but now that you're here, I'm sure you'll be getting tons of useful information. I'm a colon patient, rather than rectal, but I would say the fact that your cancer responded so completely to the chemotherapy is fantastic! Doesn't always work that way, so I think feeling some optimism and hope is warranted. Keep us posted as you go along...it's a scary journey, but you don't have to do it alone. Sending hugs and strength your way~Ann Alexandria
PS Based on your description, it sounds like you might be getting oxaliplatin (causes neuropathy) and leucovorin (which enhances the efficacy of the chemo drugs)...normally given along with 5fu, in the combo called FOLFOX.

[MrPleistocene]

I had a similar case. I wasn't certain what I would wake up with from surgery. After surgery the Dr. said that he wasn't able to get a biopsy because there was no tumor, but there was a lot of necrotic tissue. It is useful to remember that the tumor was not next to or on top of your rectum, it was part of your rectum. Now that it has been obliterated (actual term from my surgical report), part of your rectum is obliterated. That part needs to be resected and any rogue, mutated cells still surviving in the necrotic tissue that used to be the tumor need to be removed as cleanly as possible to prevent a local recurrence as well as reducing the chances of a distant met.

I have a friend with a low RC and he had a complete response and was confused. Neo-Adj chemo/rad is intense stuff, and if you don't get that dead stuff out it will either foster anther tumor or disintegrate. I wis that complete response in these cases meant the cancer left as mysteriously as it came with no trace, but that isn't the nature of the solid tumor in a functional location game.

[juliej]

you mentioned that adjuvant chemo is usually just 5FU or Xeloda. I had 5FU infusion with the pump 24/7 for 5 weeks and my oncologist has told me from the beginning that my adjuvant chemo would be three drugs (one of them a helper drug, it seems...does that make sense?) I also know one of them is the one that causes peripheral neuropathy and I have no memory of what the other one is.

Most likely your oncologist is referring to 5FU and Oxaliplatin. When 5FU is given intravenously, it is typically mixed with leucovorin in order to increase 5-FU activity, so that's probably the "helper" drug that he mentioned. Oxi is the one that causes neuropathy. Some oncs administer a calcium-magnesium infusion before the 5FU and Oxi to lessen neuropathy. It seems to work for some people and not for others. After your surgery, when it comes time for chemo, we can give you lots of tips and tricks on handling the oxi side-effects. In the meantime, eat healthy, exercise, and get as strong as possible for the upcoming surgery. I wish you the very best -- and welcome to the club!

[PGLGreg]

On the ostomy issue, my doctor made a choice which worked out well for me: no ostomy at all, but a week and a half in the hospital after surgery with my digestive system at rest, giving my bowel a chance to heal. Nothing to eat or drink -- nutrition given intravenously -- and a nasogastric tube the whole time to keep my stomach empty. Not very convenient, but better than dealing with an ostomy. However, I did not have radiation or chemo before surgery for my low rectal tumor -- only afterwards.

[Staci's team]

Welcome to the club. As others have said, it stinks to have to be here, but once you're here, you'll find it's a pretty cool place. Based on my wife's experience (Stage III RC with permanent colostomy at 32) and those of others we've met, the ostomy's really nothing that one cannot become accustomed to pretty quickly. There are plenty of stories here, at www.ostomy.org, and in the Colondar (check out Miss August 2012, Mel, and Ms. October 2012, Staci) for encouragement about what will really happen if you do end up having to have an ostomy, either temporary or permanent.

Keep us updated on your journey....and ask away if you have anything else you want/need to know from us here!


Chris