Choosing not to do Adjuvent Radiation- Advice Appreciated!

[StupidAssCancer]

I am writing tonight as I am trying to make the decision to stop my rectal radiation.
I have had my surgery to remove my tumor and 4 of 21 lymphs came back positive. I have a temp iliostomy Jpouch. I have completed 3 months of chemo Folfox and 8 days of radiation w/xeloda. Because I am allergic to the 5-fu and xeloda my oncologist took me off all chemo indefinitely. I will not be returning to chemo.
Since starting radiation I have for the past 2 days experienced bleeding from my rectum, along with major swelling and overall body pain. This along with my residual side effects from my chemo has brought me to the decision to stop my radiation.
I am scared to make this decision as I don't want to ever look back and say " what if" can you share your stories or experiences or knowledge with me? I've asked my docs, they want me to finish the full 30 treatments however they can't explain clearly to me why?!
I've read the adjuvant statistics and trky without the xeloda it seems pointless- any advice is appreciated!
Alys

[NWgirl]

I was in a similar situation (sort of) in that I had surgery first, then 4 rounds of FOLFOX, then 5FU continuously for 6 weeks while I went through 30 radiation treatments; then finished my 8 rounds of FOLFOX (last 2 w/o the oxi). Anyway - radiation. It's my understanding that radiation only addresses a LOCAL recurrence - so it doesn't do a thing for any cancer cells that may be floating around in your body and just haven't grown large enough to show up on a scan. Also my understanding that with rectal cancer, because there are so many lymph nodes in that area, treatment protocal for rectal cancer is you do radiation to prevent a local recurrence - or at least that's the hope. Again, my understanding - that colons are not radiated because they are moving around more in your body - harder to actually target an area safely with the colon vs. the rectum.

All that said, honestly, radiation was pure hell for me. But I had a temporary ileostomy when I went through it, so at least I was spared the butt burn. I think I was about 10 rounds in before I started to experience side effects. My side effects started as crazy itching - but turned into pain - a lot of it internally. It was awful. It would burn like hell when I peed. If I drank more water, it diluted the burn a little, but I had to pee more frequently - so it was a trade off. I'm not trying to scare you or discourage you - but no one warned me just how bad it would be. Still, I made it through 30 rounds. I've never had a local recurrence, but I did have spread (lungs/lymph nodes in my chest); so was it worth it? Who knows.

Have you discussed your desire to stop treatments (and why) with your radiation oncologist? I know when I've had trouble with chemo regimens, we've tweaked the doses, frequency, etc. until we can find something I can tolerate. I don't know if those options are available for radiation treatments or not. Make sure you have all the facts about why you should complete radiation (from your doctor); weigh them against what you feel you can physically tolerate - consider the "what ifs" and what you can and can't live with later - and make the decision that is best for you. These decisions aren't easy. So much of a cancer is a roll of the dice. It's so frustrating. Best of luck with your decision.

[StupidAssCancer]

Thank you so much for sharing! Yes I tried talking to my oncologist radiologist but every question I asked I felt was answered with a " I don't have a answer for that" it frustrates me and doesn't give me the security I need in my dr!
My biggest thing is exactly like you said it only prevents a local reoccurance. I'm feeling right now that the benefits of post surgery radiation do not out weigh the risks and my side effects are screaming at me to stop. I've also had crazy itching among many other things! Cancer sucks!

[PGLGreg]

My prejudice here is that you should do what your docs recommend. So on that basis, I'd say you should give very serious consideration to doing the radiation, whether or not they can persuade you that it's the best thing for you to do. You're an amateur; they're experts.

I did do adjuvant radiation, myself, but I don't think my experience is relevant to your decision, because it wasn't a big problem for me, and I did have 5fu chemo with no difficulty. (And I was only stage 2.)

I'm not real clear about what you want from your docs that you're not getting, if you are to decide to do the radiation. They are probably not going to be able to explain to you just exactly what physical changes they hope the radiation will produce that help you, since they may not know. Cancer is not well understood. But even if they are just guessing about the outcome, their guesses may be better than your guesses.

[chris60yrs]

Hi, I am new here and this is my first post. I'm a male, who had a bulky Dukes 3 low rectal with fleshy local nodes diagnosed August '12. As such I was offered radiation and had 6 weeks of 15MV external beam, with some 5FU as adjuvant.

I have to say it went really well. There was no discomfort at all, my skin was barely red. In my case the lead in symptom of bleeding also dried up nicely. The f/u scans looked better and both local nodes and margins were clear at surgery 12 weeks later. My primary had halved in size.

We did the usual precautions of lots of creme, and part filled bladder to avoid frying that! I also chatted to a "medical" urologist I know, who advised that both my surgery and the radioRx carried a 1 in 3 risk of sexual dysfunction, with these multiplying and the radiation's affect "taking up to 2 years to happen". I've been on low dose Cialis throughout to maintain blood supply, and have followed her advice to "use it or lose it". So far all is well, thought there have been minor changes. I guess I still have risks from bone damage to come?

So (no promises, but) radiotherapy can be very effective, I've even heard of cases who did well with that alone! It's only possible in the rectum off course, further up our normal gut would be equally affected. But I'd have it again.

Should add that I was overweight at the time. This seems to the good in high voltage radiotherapy - in thin people the skin can get dose similar to target, the lady usually after me who was getting a slender neck treated had quite nasty burns.

[Bob_Weiss]

I believe radiation used to be given after surgery for rectal cancer, but in recent years it is usually given prior to surgery. It has been found by research studies to be more effective prior to surgery, therefore you are justified in being skeptical. Perhaps the best approach would be to get a second opinion. I had radiation prior to surgery and the symptoms were bothersome, but I'm glad I did it. My tumor was totally burned away, which made the surgery easier.

[janderson]

You might want to continue radiation if you are worried about looking back and saying "What if". You have to be totally at peace with you decisions regarding cancer treatments. I decided to stop chemo early after my first recurrence and was at peace with it. 4 years later I had another recurrence but have never regretted the decision to stop early. Recently they found a tiny spot on my liver again but an MRI couldn't confirm wether it was cancer or not. They gave me two choices to either have a needle biopsy or wait 3 months and rescan. I elected to wait and will rescan in 3 weeks. Again I am a total peace with the decision regarless of the outcome. I would like to add the I also got my doctors input each time. I am not telling you to continue be be 100% sure about your decision in your heart as well as your mind.

[mstults]

You say you don't want to say "What If." You mention two,things. You said you had 3 months of folfox but are allergic to 5-FU. How did you do 3 months. One of the drugs in folfox is,5-FU. As to the radiation I have not had it but you say your doctors can't explain why you need it. Not to be too critical but obviously its to prevent a recurrence. Cancer is not good. We did not ask for it. But we have it and must deal with it or give up and die. Ask yourself if you want to live.

[kiwiinoz]

Given that you are facing a question that may very likely impact on your long term motality I think that a short term amount of pain and disfunction would warrant it. I, personally, kept that goal in mind when I came up against any difficult issues and I asked myself were the side effects worth any loss of a shot at a "cure"
I'll be straight and it seems to be you have already decided you want to stop, and that in your mind you are going to be cancer free. Unfortunately there are no gaurantees with cancer and I would recommend that you grin and bear it to give you the best chance at long term survival.
If you skimp on it now, and it spreads in the future, how you would feel knowing that you could have continued with both chemo and radiation?
Again, no right or wrong answers but simply food for thought.
Best wishes with your choice
Kiwi

[NWgirl]

Just want to note that pelvic radiation is generally MUCH harder on the female anatomy than male. Also, in her case and mine we had already had our rectal tumor removed - so what gets radiated is the healthy tissue where the tumor used to be. That radiated area doesn't later get surgically removed - it stays there. So with all due respect to the guys, radiation for women - at least in my case wasn't a matter of sucking it up and getting through a little discomfort, it was a LOT of serious long term pain 24/7 that pain meds did nothing for. So when a woman says she's considering stopping radiation early, while I wouldn't encourage that choice, I completely understand it and sympathize. Just my experience and observations from reading posts here (that men don't seem to have as severe side effects w/radiation as women do).

[Fred.R]

Hi.

So, I was stage 2... my tumor was T3N0M0. Everything was low risk and my Oncatype score came in low.

The doctor's recommended no chemo, showing me that my chance of recurrence would only go down by less than 2%.

The weird thing for me is feeling like I'm not doing anything to fight this, when in reality, the surgery I had to remove a portion of my sigmoid colon was, in fact, me doing something. Add in exercise daily and Im going to hope it tilts the scales even more.

I'm going with the recommendation, with CEA every 3 months, a CT at 6 and a colonoscopy at 12.

That's my path. Hope it helps a little.

[StupidAssCancer]

Well I decided last Thursday to stop the radiation due to symptoms I was having the Dr was contributing to the Xeloda chemo pill. On Friday I began bleeding out my rectum. I called Dr office and was told to call surgeon. Keep in mind surgery was 6 months this ago but OK. I called surgeon who referred me back to Cancer doc. By this time everyone was closed on Friday so of course sent to ER who sent me home. On Monday I was still bleeding and very weak and lethargic. Got into see cancer dr who saw the blood and I think dropped his jaw. He Couldn't believe I went the whole weekend with this. " sound familiar anyone?" Geeeez these docs are frustrating! He called my GI and scheduled me for a colonoscopy stat, which means tomorrow.
My GI dr office first ordered the cleanse for me and then I informed them that is a no no with an iliostomy. They then told me to drink milk of magnesia and do 3 enigmas 2 tonight and 1 tomorrow morning.
This brings me to where I am now. I drank the milk of magnesia and put my first enema in, squeeze the bottle and nothing. The liquid would not come out. "yes I had the cap off" I've done 100 enimas in my life and never had this happen! I had my husband come in and try and he was slightly more successful than me. He got about 1/16 of the enima inside me. This instantly wanted to come out "and hurt like Crazy" which it did along with a pool of blood down my legs, in the toilet everywhere. Bright red blood everywhere.
I called my GI who told me I probably shouldn't try the enima anymore and to just come in tomorrow for the scope as I am right now with no more prep. The bleeding continues but is not pouring out like it was post enima. My bag is filling and needing to be dumped every 1/2 hour with bright yellow clear liquid and stoma is stinging.
I'm curious had anyone experienced this? What in the world could be causing 1- the bleeding 2- the enima liquid blockage from not being able to go in?
I'm a but freaked out to say the least!
xo,
Alys
ps. I TOTALLY agree girls rectal radiation verses guys and pre verses post are two totally different ball games unfortunately.

[NWgirl]

Omg - I've never heard of this - I hope you have answers soon!!!

[StupidAssCancer]

I found one other post on here by doing a google search where the girl had the exact same experience. Couldn't get liquid from enima to go in and same bloody disaster. She never did a follow up Post so unsure what the outcome was
This is crazy! I'm trying to find any info I can. Of course my mind is freaking out that there is a blockage of some sort- the last time there was a blockage it was my tumor.... I don't like the sounds of that!

[StupidAssCancer]

I just got out of colonoscopy. They found a new large nodule at same site as surgery.
Seriously?! Biopsy sent to pathology. Brain sent to looney bin! I'm freaking out.