Radiation - help! Plus a rant...

[Traveler001]

Hello again,

Well I visited a 2nd opinion Oncologist today. This guy told me that from the surgical pathology report, it is unclear where the tumor was located. Whether it would be classified as a rectal or colon cancer. And that he has to call my surgeon, who is conviently on vacation, to verify this.

The thing is that if it is rectal, then I will have to go thru radiation as well. This scares me. I have heard that the side effects of radiation can be permanent. But I want to ask you if you know, or have personally gone thru radiation treatments, what the story is. Did you have any temporary or permanent damage to surrounding organs, IE bladder, or sexual disfunction? and any other problems? Incontinence? (I really dont know what can happen from radiation)

All previous doctors, surgeons, etc classified my tumor as colon, not rectal. It was 15 cm inside, they would not do an ultrasound on it because it was so far up, and also they could not get a good look at it with a rigid proctoscope. Because of this, the Onc says this is encouraging and that radiation is probably not needed. So this rant/scare might be all for nothing and I will know in a few days what way this will go.

But also, this Onc says he will not give me any monoclonal antibodies (like Avastin) unless it is in a clinical trial, because they have yet to be proven to be worthwhile for Stage III patients, and in fact could cause more harm than they are worth. This I see as a sign that he would not try something new or be an innovator, take a chance to cure me, etc... Id much rather take a drug that targets cancer cells, than put radiation on all organs in my pelvis.. thoughts?

But in the meantime I have a problem with the communication skills of my Drs so far because first I was told that I need to start chemo in 6 weeks, but next was told "Oh no.. you should start any time between 3 and 6 weeks.. " Next, these miscommunications happen, I figured these guys would be thorough..

In any case the Onc that I like the most, I met with 2 weeks ago. He was a nice person to me, was personable, and had an upbeat attitude about me being cured. He however was not up on the latest regarding diet, and some supplements that we have discussed here, like Avamir, ACHH, etc.

what do you think, and advise?

thanks much

Eric

[Traveler001]

Hi,

well its me again. Perhaps I was freaking out before.. I did some research online on rectal radiation treatments and it seems that from what I gather, the radiation is 5 days in a row. And the side effects seem to be temporary and go away. I didnt know this. So maybe radiation isnt so scary afterall. I guess if I have to do it, I can face it. But Id like to hear from anyone else here who went thru it and what your experiences were..

thanks again

[johnnys84]

I underwent 30 rounds of radiation (5 days a week) for rectal cancer. Honestly, it wasnt all that bad, of course that first session is terrifying but all in all it is manageable. The first couple of weeks were not that bad, after that though I would have a couple episodes of incontinence. Other than that I had no other side effects. However, by the end of it you could have some rawness which made going to the bathroom feel like you were pushing out flaming golf balls. In addition, when it was all over it all starts to catch up with you, the week following my last treatment, I must have slept 15 hours a day at least.

One thing you may want to consider if you do have to undergo radiation (and are a male) is to bank sperm.

Good luck

[eitter]

You need to hear the good bad and the ugly and mine is the UGLY. I have SEVERE permanent damage from radiation. You can read my story on my website, go to cancer journey.

In a nutshell, I have lost bladder capacity, my ureter are cut off from my kidneys and I require surgery every 3 months to replace the stents to keep them open. I have cronic rectal pain and I now see a pain specialist. The last two weeks of raidation I could barely walk and had to stay home in bed. My bladder was taking a direct hit each time for 6 weeks and it was so irratated that it made it hard to walk.

Keep in mind that everyone's story is different, and you could come out as one of the good one's, I hope that for you and will send you blessings!

[larbo's wife]

Hi From reading your post it seems that your diagnoses is very similar to what my husband had 2 years ago.
His tumor was located 16 cm up and was first said to be colon cancer. When we met with his surgeon, however we were told that it was considered a rectal cancer. My husband is a large man and that is why it was considered to be in the rectum.
He had 5 1/2 weeks of radiation prior to his surgery. We elected to have his radiation done at the Mayo Clinic. We were referred to the Mayo for his surgery. We had originally planned to have his radiation done at a cancer center closer to us but decided to have that done at the Mayo Clinic also. He had radiation Monday through Fridays and wore a fanny pack and pump for the chemo that he was getting round the clock. On Mondays he would go the the chemotherapy center to have his port flushed and a new bag of the 5FU put in his pack. He didn't have any issues with burnt and blackened skin like some of the horror stories we have read about. His main side effects were loose watery stools and painful, burning both during urination and having bm's. He also started to feel very fatigued.
He was given almost 5 weeks following his last radiation treatment to heal before he had his surgery. His surgeon was able to remove the tumor and gave him an ileostomy that would be reversed about a month after his chemotherapy regimen was finished.
Long story, short it has been 1 year and 1 month since his reversal surgery. He is doing well for the most part. His main issues continue to be nerve damage from the chemotherapy that followed surgery. He also has had a couple of problems with blockage from a hernia he developed where his stoma used to be. The last time was just this week. He ended up in the hospital overnight. Very painful and scary.
I am sending prayers your way. May God Bless you and help you be strong, Kathy

[tandy24]

My tumor was 10 cm up, I was told that I could not have surgery without having radiation first. I had 28 rounds of radiation along with my "buddy" pack of chemo 5 days a week. I was told even with the radiation and chemo prior to surgery that I would have a bag, hopefully just a temp. bag. My tumor was very large and bulky. My surgeon woke me after surgery and said I want to be the first to tell you that no bag was needed, the radiation did such a good job that there was just a crater where the tumor used to be. It was not fun, the burns sucked!! I never thought about any side effects from the radiation. I thank God that I do not have any problems after radiation.

[jane]

Hi,

I had rectal cancer and had the 5FU pump combined with radiation for 28 treatments. I had 2 episodes of diarhoea and was mildly fatigued. No further problems. No skin irritation at all and have no lingering issues - finished radiation jan 06.

God luck,

Jane