I am new here : rectal cancer stage 3

[going with the flow]

Hi everyone. Its been over a month since diagnosis and I am due to start treatment next week. Chem/radiation for 5 weeks, than a rest, then surgery with a temporary iliostomy, another break and then months of chemo. I am very nervous about starting treatment and am hoping not to have too many side effects. If I think about everything that is ahead of me, it is overwhelming. I will be off work for a long time and have no Long term disability, so that is a stress too. Anyone out there get through this whole thing with minimal issues?

[weisssoccermom]

First of all, welcome to our club. I'm sorry, though, that you had to join us but am positive that you will find many people here willing to help and give you some advice and support.

I'd like to address your comment that you'll be off work for a long time. Why do you say that? You'll find many people on the board who have continued to work through their treatments, etc. and have only taken time off during the surgical recovery phase. That's not to say that everyone does, but I think you'll find that most cancer patients, regardless of the stage, just want things to be as 'normal' as possible.

There is no reason why you can't or shouldn't work through your chemorad treatments. Yes, the treatments can have side effects but there are lots of things that you can do/not do to either avoid those side effects and/or minimize them. Let us know if you want some tips. The waiting period (around 8 weeks) is another time that you can still work and be normal. As a matter of fact, it is a time when you usually feel pretty darn good. Obviously you can't work during your surgical stay and for a time period afterwards, but when you're undergoing chemo you will probably feel fine for long periods of time and you can work during those times. Everyone is different so there's no way to definitively say you won't have side effects but right now, don't go assuming the worst. Take this one day at a time and plan on working as long as you can (you actually might find that maintaining something as close to normal actually helps get through all of this) and go from there.

Try not to stress about the what ifs....they may not happen. You'll also probably find that all the horror stories you've heard about chemo aren't necessarily true for the chemos you will most probably be on. Again, breathe, try to relax and take it one day at a time.
Jaynee

[kellywin]

Hi and welcome. I think you'll find many stories here that will reassure you. I know it's so overwhelming. You feel so many emotions. I think the strongest anxiety is where you're at right now...the dreaded waiting. You wait and obess about everything ahead of you. Honestly, I think in many ways, this is one of the hardest parts of this journey. Sometimes the anxiety is way worse than the actual side effects. You can see by my signature I was also stage 3 rectal, did radiation and chemo, surgery and more chemo. I worked the entire time during my radiation, I never missed a day. I've posted before that no one at my work even knew (except my boss and a friend) about my diagnosis and treatment until I had finished radiation. Yes, there were side effects that suck, urgency, diarrhea, and burning. (One major tip, put lotion EVERYWHERE during radiation.). I was off 2 months after surgery. I could have easily gone back to work after 4 weeks (I went snow skiing 4 weeks after), but I needed that extra time mentally. During chemo after surgery, yes it sucked and I hated it. I worked most of the time. I would take off the infusion day and the day or two after. Then depending on how I felt more time off possibly.It's a long hard road with many emotions. Try and relax. Don't assume the worst, know that everyone is different, has different reactions, some good, some bad.

Kelly

[going with the flow]

Well thank you girls for replying! I will gratefully take all the tips you can give me! I am a continuing care assistant and look after people in their homes. I am scheduled sometimes with a different person each hour and never know day to day where I will be. I guess I am worried about dealing with side effects like urgency and diahrea when in peoples homes. That is a concern along with the fact that my radiation appointments are all over the place time wise so I am not sure work would be willing to try and schedule me around ever changing list of appointments. I am still awaiting the official word that I am starting next week, as they said it could be delayed. So there is my dilemma. I may plan on working till side effects start, if my employer is able to be flexible. I would love to hear your best tips for handling things and also what sort of lotion did you use for EVERYWHERE? Just how bad is the burning?

[Kick'nAssCancer'sAss]

Yes it really can be overwhelming at the start. I am doing the exact same treatments as you can see by my signature. Take each day at a time and always have that goal that you are looking forward to when treatments are done. I had to give up my ice hockey when I was diagnosed since I could not risk injury with the treatments. When I get down and feel like there is no hope then I think about being back on the ice and that suprisingly gets me through. Stay away from the internet and stop reading about survival rates and others misery. It will get you down and you must stay positive. This chat board is great for info and I have found some of the tips usefull. Lots of sad stories on here and I believe that most people do have sucess with this disease and when they do they move on from these boards. Anyways the worst is now behind me and I am on my final chemo with three down and five to go. Looking forward to hitting the ice again this fall and remember STAY POSITIVE, STAY AWAY FROM DR GOOGLE, and KEEP YOUR CHIN UP....Good Luck

[Coppercent]

Just remember to take one day at a time. I went through the same treatment plan as you are going to go through and I had minimal issues. When I say that I just learned to ignore the side effects and get by. I was the same as kellywin and I went through radiation/chemo before I told anyone at work that I had cancer. No one even noticed any changes so when I told them I would be out for three weeks for surgery for my LAR they were shocked to learn why. I actually took an extra week off after surgery because my work was closed down for the Christmas holidays. Plus I ended up having an extra surgery a week after my LAR. After surgery I did chemo for six months and worked through out treatment. I had to take Wednesday mornings off for the infusion but I would go into work in the afternoon. My oncologist encouraged me working and keeping my normal routine and adding daily exercise. And I might add, he was quite the exercise nag at our appointments. But I honestly think for me, working and adding the additional exercising made the journey much easier. I had a temporary ileostomy for 11 months. I had it a few extra months trying to schedule the week off of work for the reversal surgery. Good luck!

[Peabody5422]

You probably will have side effects but most of mine went away within 18 months so hang in there. The not knowing is the worse and that is all in your head.

[jvaime21]

Keep working during your chemo ., it will help you not to worry much., sometimes the side effect comes late. means after the treatment or chemo.
Good Luck !!

aime

[autumn735]

I have a very similar story. I was diagnosed stage 3a in November. I had 28 treatments of radiation/Xeloda without too many side effects (mostly just fatigue and some burning urination & urgency in the last week or two). I had laparoscopic resection surgery with a temp ileostomy on March 26th. I spent 3 nights in the hospital and recovered for another 3-4 days at home before I started working again (from my home). I was back in the office about 2-2.5 weeks after surgery. I got a chest port about 1.5 weeks ago and I started FOLFOX chemo yesterday and am currently wearing my 5-FU pump. I worked without any problems throughout the chemoradiation and got back to work quickly after surgery. I plan to work through FOLFOX as well, but I suppose that is up in the air until I see what symptoms come my way. So far, nothing unmanageable but it has only been 1 day .

Feel free to PM me if you have specific questions. I know it's nice to have somebody to ask who has been through it recently.

[going with the flow]

Again, thank you all for replying. I had my colonoscopy Mar 5th and saw the cancer myself on the screen. It was just a routine test and I was in absolute shock to hear I had cancer. I was terrified at first but have been working on getting rid of fear since it will serve no positive purpose. I can see that coming on here was a good move. Thank all of you for taking the time to talk to me. It feels comforting to be among people that have been through it or are going through the same thing. Muskokamike- staying away from Dr Google is good advice! I have already scared myself to death doing that!

[gtownguy]

I also did 6 weeks of radiation and chemo before my surgery. That part wasn't nearly as bad as I had imagined and I continued to work through that. The worst thing was just lots of fatigue. The radiation can make your skin appear as if it had a mild sunburn, so I used Eucerin lotion for that. The Xeloda chemo made my mouth really sore and very sensitive to acidic foods. The oncologist prescribed me some Nystatin mouth rinse which helped.

Getting used to the temporary ileostomy was probably the hardest part of the whole cancer journey. Make sure and schedule an appointment with a WOCN (wound & ostomy care) nurse. They are invaluable and will show you everything you need to know from ordering supplies, to changing the appliance, etc. Good luck and try to relax although I know that's much easier said than done. Chances are it won't be nearly as horrible as you are probably imagining.

[Coppercent]

I was awake for my routine colonoscopy as well. I went in for all of my physical tests for them to tell me wonderfully healthy I was but it turned out differently. He had the camera picture showing on a nice 42inch screen tv. He did several snips removing polyps then there it was the big ole ugly tumor. He didn't even have to tell me, I already new. But some how I found it comforting to see what I would be fighting.

[kellywin]

I had my colonoscopy Mar 5th and saw the cancer myself on the screen.

Same here. Originally thought it was hemmoroids, then a polyp. When that black ugly mass showed up on the screen during the colonoscopy, I knew. My doctor knew (it was actually a colo-rectal surgeon doing the colonoscopy), so the biopsy results were not a shocker. But seeing that on the screen and knowing I had cancer, unbelieveable.

As far as lotion, I used Cetaphil, comes in a tub. I put it on from the belly button down to mid thigh, over hips and here's the fun part, and this maybe TMI, but all the way between the "cheeks" and everywhere down in there. This is the only part that I didn't realize I needed to lotion up and toward the end of treatment, wow, ouch. But that's what Norco is for . I also used a very mild soad, again, Cetaphil, it was a bar soap. The nurses actually said not to use any soap down there. Yeah, right, like water only is going to clean any of those areas! If you're a woman - there are some other considerations as well.

As far as your work, I can see your fear about urgency at others homes. You're going to have to get over any fear of rushing or needing to go pretty quickly to the bathroom, because it's going to become your reality for awhile. Your radiation place should be able to get you a "set" time every day, that way your not trying to work around different times everyday. The side effects most likely won't show up for awhile. Even at the end, I was able to do anything I wanted, (I snow skiied 2 days after radiation ended - this is a theme with me as I had all these treatments during the winter and we had season passes and I didn't want to miss out using them, ha ha) And mine went away really quickly. Then you're going to have some time off for surgery. When chemo starts, your probably going to need some time off. Again, your chemo center should be able to give you approximately same time each treatment so that you know when it's coming. Then you'll just have to play it by ear and see how you react.

[weisssoccermom]

I sent you a PM

[nkoske]

I do have to agree the first couple weeks were the worst. So many questions not enough answers. I as well was able to work during treatment. I only had to take 18 days off work. I don't have the most strenuous job in the world (sit at a desk mostly) so I was fortunate there. I suppose if I was a plumber or a carpenter things might have been wildly different. I found work as a great way to get my mind off of the day to day cancer stuff. I can't imagine how I would have been able to mentally deal with sitting at home all day contemplating my mortality.

Personally I don't think Dr. Google is as bad as many make him out to be. Dr. Google is likely how you found out about this wonderful place. As for other information, you just have to be realistic about the information and realize that statistics do not predict individual cases. One bit of KEY information, the data out there is OLD and treatments are continually being improved, so what you see for statistics today doesn't necessarily reflect what they truly are if you're beginning treatment today. For example if there was 5 year survival data published today, those patients likely started their treatment in 2007 or 2008 and things have advanced (maybe not as quickly as we'd like, but advanced none the less). For me, it helped me get some answers. But, I'm a "prepare for the worst, hope for the best" kind of guy. So knowing and preparing for the worst possible outcome mentally, is what I need. As a bonus since I prepared for the worst and my treatment was no where near that, it was up lifting for me. As for being scared, well, colorectal cancer is serious freaking business, and in my eyes being scared is a completely appropriate response. Sleep will be lost, that's a guarantee. But, just know every year more and more people are surviving this disease, so fight with everything you have because you can win.