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New diagnosis

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

I know everyone on here is either a survivor or a caretaker, but there doesn't seem to be any other good discussion boards for people in my current situation. I was diagnosed August 2nd, 2007 with stage III rectal cancer. I just ended my stint of chemoradiation therapy, and was almost done with my radiation booster treatments when i got urine retention so badly, i had to be rushed to the hospital and cathetered. After that, things seemed to get worse. The catheter got blocked, and i had to be re-cathetered two more times. This was a nightmare because i already had really bad radiation burn to my bladder. After that, it seemed my tumor swelled, and blocked all passage out. If you have experienced this, then you know hell is a place on earth! My fever steadily got higher, so i took the antibiotics the doc gave me for a preventative bladder infection, and my fever never got higher than 101.4. I can't take my narcotics for pain because they either cause constipation, or urine retention. I have two more radiation booster treatments to go, and i DON'T WANT THEM! I don't even know if the treatments i've received so far are working. The tumor feels bigger than it was before i started my treatments. If anyone has experienced this same thing, please tell me if your tumor did eventually shrink, and how long did it take after treatments ended? Thank you!
Krista

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

Hi Krista,

Sorry you are having such difficulties. I had chemoradiation prior to my first surgery. Never had any urinary retention problems but did have the burning of the bottom. Have you talked to the radiation doctor? They usually recalculate dosage as one goes along and may change or even cancel the last two doses. I suspect that it is swelling from an infection or effect on the tissue there from the radiation and not your actual tumor that is getting larger. That would be pretty unusual. The only good thing is that these issues should improve quite a bit about two weeks after your last radiation treatment. I know that is a long time when you are suffering but try to hang in there.

Dick

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

I have to agree with Dick. Sounds unlikely to be that the tumor is growing...my pre-surgical chemo/rads actually ELIMINATED my stage III, 2-inch tumor on my rectum....I DID end up with some pretty nasty burns on my bottom, tho...talk to your rad/onc....maybe they can adjust the 'beam' to go a different path to avoid your bladder.

Hang in there, the end is in sight!

Hugs Kathi

katienavs's picture
katienavs
Posts: 88
Joined: Nov 2006

Hi Krista,
I was diagnosed with stage iv rectal cancer in June 2006. I had A LOT of problems with going to the bathroom and needing the tumor to shrink so things could pass through. By the end of radiation I couldn't tell a difference with my bathroom patterns. I guess it was because of all the swelling from the radiation and side effects of chemo, etc. But when they went in with a scope at the end of radiation the tumor was 100% gone. So don't think it isn't shrinking. It probably is. It's probable not even there. I know how scared and discouraged you must feel right now. I was in your same shoes and was positive the tumor was still in full effect. Have faith and stay strong. Let me know if you have any other questions.
Katie

Limey's picture
Limey
Posts: 447
Joined: Mar 2004

Hi Krista. Sorry you hare having such a sucky time. It sounds like old Mr. doubtitisworking has come to visit. I can not imagine what you are going thorugh personally. I have had my doubtfull battles myself but for colon cancer.

I have been told and now know for myself that creating a visual of what you want to happen is really helpful. some say they see the pac man munching the tumors. others see the cancer running like the bugs on the RAID commercial. get a mental picture of what you want to happen and visuialize it often. more than you would like to. you mind has a funny way of doing what you tell it to.
Mark

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

Thank you all so much for your insight. It has truly strengthened me. I was beginning to feel very alone, but now i don't. I think i'm going to use this website a lot over the next...well, probably over the rest of my life.

Many hugs!
Krista

Betsydoglover's picture
Betsydoglover
Posts: 1256
Joined: Jul 2005

Hi Krista -

Welcome and I am sorry for your diagnosis. I am Stage IV, but my cancer was in the colon, so I am sorry but I can't comment on the radiation therapy used for rectal cancer. I can say that you have come to the right place and I hope you keep coming back.

Your initial comment was "I know everyone on here is either a survivor or a caretaker, but there doesn't seem to be any other good discussion boards for people in my current situation."

PLEASE realize that you are a SURVIVOR from the day of your diagnosis. Being a SURVIVOR does not mean there is no evidence of disease - but you are diagnosed and fighting. The fight can be hard, but things will get better. You can beat this - being Stage III is already a "good thing" relatively speaking.

I wish you the best. Hopefully others can help you with the radiation problems. And when you finally start follow-up chemo (the radiation WILL end), there are even more of us who can help you with what to expect.

I wish you the best.

Take care,
Betsy

KierstenRx's picture
KierstenRx
Posts: 249
Joined: Nov 2006

Hi Krista,
I am sorry to hear about your bad time with radiation. Quick history on myself-diagnosed 9/18/06 stage III rectal cancer (32 y.o.) chemo and radiation, bowel resection February 07, FOLFOX and Avastin 4 months, clean scans 9/07. I didn't have too much trouble with the bladder, but horribly burned my bottom. I was in agony going to the bathroom. It does get better.... The pain started to subside about 2 weeks after surgery, but continued to hurt till surgery. I ended up with a permanent colostomy. I know you feel like your tumor is growing, but that is highly unlikely. I think your tissues are just extremely inflamed. I remember the last week of radiation I had a BAD attitude and was wondering if the radiation had even done anything. The proof was during surgery when my large tumor was just a burnt out shell with just a few cancer cells left. It also was no longer in my lymph nodes then. They were able to get clear margines. I knew going into radiation that I would probably end up with a colostomy, but it's not bad (small price to pay to be NED). You will get through even though you are suffering right now. I will pray for you. Don't hesitate to email me if you have any questions.

Kiersten

johnom's picture
johnom
Posts: 86
Joined: Jul 2004

Dear Krista,
All the advice I've seen on here is excellent in one way or another. I went through the same excruciating pain the others describe, and luckily avoided the bladder troubles before surgery. I was hospitalized for 11 days as they tried to get the pain controlled with morphine. It made me ill eventually. One day they put on a fentanyl patch and I was back at work in 48 hours. There are pain remedies available, ask for and take them when you get them. You will be glad for the help. God bless you in your journey; the days do get much better.

mom2eleni
Posts: 7
Joined: Jul 2007

Hi Krista!!

I feel your pain! I am about 6 weeks out of chemo and radiation for my Stage 3c rectal cancer. Radiation was sheer hell...I did not want to go in that last week. It took ever morsel and bit of inner strength to dress myself in order to go. I cried ono the way..and I am not exaggerating. The pain was unreal. In my situation the tumor was so large that they were trying radiation and chemo in order to get me into the category of "operability" Scary stuff...I am only 33!! I want to live!! So go I did...everyday, amidst the tears. And what were my results?? The tumor is gone. The doctors are stunned! I am shocked! Even my nodes are clear..all the biopsies came back negative post treatment..I am cancer free..LOL..They never thought that I would have complete and total response to the treatment since everything was not working for me at that point. I even had to come off therapy for a week and a half due to blood counts, ucers running rampant in my mouth and esophagus and the the skin just sloughing off my bottom. but was it worth it...you bet your very burned bottom it was...Cancer is hard..the treatment is harder...But life is so worth the fight..
I'll get off my soapbox now. I am sorry if I seem to be very pushy...but you are not alone...I will keep you in my thoughts and prayers.

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