Stage IIIC rectal cancer - survival/recurrence

[karma]

Just wondering - has anyone on this board at stage IIIC (lymph node involvement) rectal cancer had chemoradiation, had some shrinkage of the tumour but not a complete response but still chosen not to have surgery and had just the chemo or done something else and survived? What other treatment regimes are there and is there any chance I could be cured by something else if I don't have surgery?

It seems from this board that most people at this stage have a recurrence anyway, even with the surgery and follow up chemo. How much chance is there really of surviving this??

[Jen]

hey don'y categorize me just yet..I'm doing OK.

Surgery is your BEST chance for a cure and that gives you about 50%...everything else is just clean up.

I think of cancer as bread mold...sometimes it's just a little bit and hasn't affected the whole piece and you can slice it off and the rest is fine, or it has sent nasty threads all through and it's not just in one spot. I hope my 'bread mold' was localized. But I decided to cut it out, poison it out and burn it out. Your choice, but you'd be wise to do the same.

[Lee]

Jen said it best, SURGERY IS YOUR BEST OPTION.

I was stage IIIC rectal cancer (6/13 nodes). I just celebrated my 5 yr mark since diagnoses, and per my Onc I'm doing great (ie no reoccurences). I had 6 weeks radiation (with chemo), followed by surgery, then 6 mths FOLFOX. About 10 mths of treatment all together.

Radiation helped shrink my tumor (make no mistake, it was still there) and destroyed most of my rectal muscles. Because I was tied to the house (potty accidents), I gave my surgeon carte blanc to take all she wanted and knew I would end up with a permanent colostomy bag. I became NED following my surgery. FOLOX was to clean up any stray cancer cells.

I believe walking helped me a lot and did it when ever I could. It helps with pain management, emotional well being and possibly helps reduce chances of a reoccurence.

Hope this helps, getting a 2nd opinion is always a good idea, but I'm sure everyone will tell you surgery is your best option.

Best of luck,

Lee

[Ivona]

I guess I'd have to ask, why wouldn't you do surgery?? Personally I found the surgery easier than being on Folfox...but that's just me, lots of people on this board found Folfox bearable.

[karma]

Ivona - because the tumour is so low, the surgery would be an APR and I don't think it's worth it.

[Lee]

I guess I'd have to ask, why wouldn't you do surgery?? Personally I found the surgery easier than being on Folfox...but that's just me, lots of people on this board found Folfox bearable.

Interesting, I found radiation to be the worst.

Lee

[cgrimm5]

Karma-
I just recently (back in Feb.) Underwent the dreaded APR (abdominoperineal resection) It was necessary for me because my tumor was also extremely low. It is a big surgery, and yes, I did end up with a permanent colostomy. Before my surgery I was completely freaked out. I did not want the colostomy. I got second opinions, and everyone agreed that this was the surgery that I needed.
Now that I am post surgery, I have to say that the colostomy is not as bad as I had feared. I am also fortunate that my husband as well treats my colostomy as no big deal. It is an adjustment- mentally and physically- but I have decided that I will do whatever is necessary to give me more time with my 5 (yes, 5!) children.
Its all overwhelming and scary- cancer, treatments, surgeries, and the unknown. If you need to, get more surgical opinions- it could help put your mind at ease, and help you make decisions for your treatment plan.

[NWgirl]

Karma - does this mean you would have a permanent colostomy? If this is your concern, I completely understand why you feel this way. When my surgeon told me I would have to have an ileostomy I completely fell apart. My experiences with a colostomy was when I was 17 my father had colon cancer and a permanent colostomy as part of it. Us kids knew little to nothing about it except that it seemed gross and disgusting. I asked my surgeon - "isn't there any other way" - in no uncertain terms, she said "no". My ileostomy turned out to be temporary - but I did have it for a year. It was reversed last November and believe me, there are many, many days I wish I still had it. I'm adjusting to my new plumbing, but its been tough. I never thought I would say this, but in many ways, the ostomy was a blessing.

Before you think that you couldn't or wouldn't ever want to live with a colostomy, please check out this web-site - http://www.uoaa.org/forum/viewforum.php?f=2

It's the United Ostomy Associates of America. People on the chat group have ostomies for various reasons - crohn's, ulcerative colitis, diverticulities and of course, colorectal cancer. It never occurred to me that my LAR wouldn't be worth it - I guess that will to survive took hold of me and it was the only way I knew of to try to stay alive. I also thought I would never be able to adjust to or accept my ileostomy - but I did. My life was very good with my ileostomy. Acceptance didn't happen over night, but it did happen, and it surprised me more than anyone!

As everyone has already stated, your best chance at survival is surgery. Period. Please don't try to interpret people on this board who have had a reccurrence as a statistical measure. Remember, people who haven't had a reccurrence tend to go on and live their lives without having to hang out on a cancer support group. I hope to be one of those people someday.

[Sally1898]

Karma--
I had Stage 3 rectal cancer, and as a result had permanent colostomy surgery, plus 6 weeks of daily radiation, and 52 weeks of chemo. It was hell, but I am now an 11-year survivor. Yup, the bag's still with me, no change there. Surgery gave me the best chance at survival, in both the short and long term. Chemo and rads were equally necessary, in my case. I did it then, and I would do it all over again-- I wanted no regrets, I wanted to maximize every opportunity to beat the disease. Please keep an open mind toward surgery. Life afterwards is different, and has its frustrations, but it's LIFE that I'm still here to experience, rather than to have missed out on. Think carefully, ask questions, do research. Best of luck.
Sally

[GO BLUE Girl]

Karma, I am a 5 year and 3month survivor of stage IIIC rectal cancer, I had a low ant. resection and I DO NOT have a colostomy. Unless your tumor is totally gone after radiation and chemo the best chance of survival would be surgery to remove the rest of the tumor in my opinion. I also had 5/29 lymph nodes + after OR and required FOLFOX after healing from surgery. In my mind at 45 years old at DX......living was the best and only option for me and I deciced that I would do whatever it took. Get a second opinion if you need one and find the best colorectal surgeon you can!! Stay strong, Beth

[karma]

Surgery is my biggest fear, if it was just chemoradiation and chemo, I could deal with that. I feel I am too young to have the kind of life I'd be left with after the surgery. I am so upset the chemoradiation didn't shrink the tumour UP enough, maybe I could have done something more.

[NWgirl]

Karma - I don't think anyone will tell you that surgery is a cake walk, it isn't. BUT - it's not THAT BAD. The key is find a GOOD colo-rectal surgeon who you trust and who you feel good about. Through dumb luck - that's what I ended up with. This surgeon cared about me as if I was her sister. She was tough when she needed to be and extremely caring and compassionate when she needed to be. The day of surgery, as soon as I saw her face, I knew I'd be okay.

I was in the hospital for almost 2 1/2 weeks after my surgery - much longer than most. My only complication was after going home after 9 days, I started vomiting and couldn't stop - so back to the hospital for me. They basically stopped the vomiting and started all over with my eating (or non-eating at first). Surgery is rough but there are GREAT pain meds to help you with the pain. You can do this. In a strange way, cancer can be empowering - you do things you never imagine you could have done - all for the will to survive. I have some scars from the surgery, but they have healed amazingly well - and scars have never bothered me anyway. The thing about surgery is you notice improvement every single day. Recovery can be relatively quick. Not over night of course - but from one day to the next you WILL notice an improvement. AND - after surgery, that creepy, crawly, yucky tumor is gone from your body. And THAT feels good!

If there is anything we can share with you as far as personal experiences to help you through your fear of surgery, we're here for you.

[Jen]

Karma, you can do the surgery....you CAN do this. 1st of all book the surgery for sometime very soon- once it's booked there's no waffling. Find your happy place...visit it, or know it and have it well formed in your mind - tell your anethesiologist not to distract you from it by other idle talk while they are administering. Mine was a place where my husband and I sat on a bench years ago and decided we wanted to have a baby - before my surgery we visited that place with my then 2 1/2 year old and got pictures on the bench and me holding him on a path of wild flowers....that was my happy place I envisioned it until I fell asleep...then I woke up and it was over...your body is an amazing healer and always wants to right itself. Just realize you will do what needs to be done, walk into it numb if you have to but just keep walking through it. I decided I would walk into the surgeries, and into the chemo, and into the radiation...I'd just keep walking and taking it, I'd walk in between to heal and be strong and now that I did it I want to run like hell and sweat away my anger, fear and frustration and feel that as long as I'm running it can't catch me. I felt like I lost in a sword fight for a while, but I healed beautifully, this is the body my mind has to live in...it is almost crazy your mind can be so strong and your body can fail you, but you have the ability to make the choices to try to fix it, and all of those other brilliant minds who have found surgeries and drugs to help you....I just thought if these options wouldn't have been available to me I would have clawed my way to get to them, we'd have sold everything to live in a cardboard box so that I could live...and we still will.
Others may not agree with my point of view...but it's how I see it

[karma]

It's the thought of the permanent colostomy that I can't accept. Once that's done, there's no way to ever reverse it and I'm stuck with it. I already feel like I've given up so much.

[Surroundedbylove]

Karma,

You can do it. All of the studies I've read (and I'm a reader!) point to chemoradiation, surgery, and chemo as the way to get the very best chances for survival from stage III rectal cancer and there are good survival statistics in the studies. Also remember that someone has to be in the "good" part of the survivial statistics and if you're young you've got that on your side. I just had my LAR and temporary ileostomy about a month ago. I was in the hospital for four days. The pain medication they used was great - I was on an epidural and also had other pain meds. It isn't easy but it also is manageable with the help of a good colorectal surgeon, a good ostomy nurse, family, and friends. It is psychologically hard to adjust to the ostomy but you know, every day gets better on that front. Definitely check out the uoaa.org and also you can ask your local chapter of uoaa for an ostomy visitor before your surgery. They usually send someone who has a similar situation to yours.