First Post from Long Time Lurker

itsallgood73 Member Posts: 5
edited March 2014 in Colorectal Cancer #1

I have been reading this message board off and on for the last two years. I was diagnosed with rectal cancer at age 32, in July of 2005. I had the typical chemoradiation for 5.5 weeks, surgery, then 7 months of post op chemo (FOLFOX then switched to Xeloda after I could no longer tolerate the FOLFOX treatments).

Currently I am having some common post cancer problems: pain and recurrence worries. The pain is in my rectum/tailbone and goes down the front of my legs to my knees. I have been having this pain since May.

I just had a PET scan, which showed an area of uptake around the original tumor site. I had a scan about 6 months ago that showed this same thing. This time the scan results show an "increase" in uptake as compared to the previous scan. Now I am awaiting word from the docs as to what the next step will be. Will we biopsy? Or will they want to wait and see once again (which I am reluctant to do).

After the August scan the docs said, let's scan in 6 months and if we see the same or less uptake, then we won't worry. Well, since it is an increase, I guess I am starting to worry.

Anyway, I have posted on other boards a bit, but have just "re-found" this board now that I am dealing with this new twist. I have had 3 surgeries in addition to my TME/Ileostomy and Reversal surgery. One was a resection when the ileostomy site area blocked, and two were for lysis of adhesions. I have spent MANY nights in the hospital and months at a time on TPN due to blockages from scar tissue.

As you all well know, it is not an easy road, but I continue to keep taking the new challenges and pushing on.

My two questions are: How are you dealing with post treatment pain, if you have it? and How many of you have had a recurrence? What were your first signs and how was it finally 'proven' to be cancer?

My deep appreciation to you all. I wish you all well in your fight against this horrible disease.


  • jerseysue
    jerseysue Member Posts: 624 Member
    I was dx in April 2005 with Stage IV colon cancer. I have a temp colostomy which I still have. I've had pain for the past year and it just seemed to get worse and worse. I had MRI, scans and they never showed anything. My CEA was rising and that is a sign for me that the cancer is back. I started this last time (this is my 3rd recurrence) with taking Xeloda Monday thru Friday 2 in the morning and 3 at night. I'm now down to 2 in the morning and 2 at night. I just had another MRI and they found disc disease and a bulging disc. I'm grateful it isn't the cancer but it took me a long time going to my onc and my family docter to finally figure out what it was. I'm taking morphine and tramol for pain and inflamation. Even though my CEA is now down to 3.9 I'm still on the Xeloda. Hopefully they will find that the cancer isn't back for you. If it happens to be cancer there are still a lot of different chemos that can be used. You also have a great attitude which really helps. Lots of luck to you.
  • sladich
    sladich Member Posts: 429 Member
    I'm a stage 4 also. I've had 3 recurrences - 2 in the liver and 1 in the lung. All were found on CT/PET scans. I had no pain. There's so much more they can do these days. Best of luck and hopefully it won't be the cancer.

  • KathiM
    KathiM Member Posts: 8,028 Member
    I'm sorry for the pain, although it sounds like siatic nerve might be involved, especially since it was rectum....rads do a big number on the hip bones and all of the surrounding stuff...including the siatic nerve. Believe it or not, I found that increasing my calcium helped...seemed to be caught up with my osteoporosis (which, BTW, happened during my treatment...). Stage III rectal cancer, age 49 at dx 11/04. Chemo/rads, resection to remove my rectum and sig colon, J-pouch proceedure...NED 5/05...

    I sat on a u-shaped (not a hemorroid pillow, which is an oval) pillow...with the opening to the back so that my tailbone was not touched. I used this everywhere for almost a year. I STILL have trouble if I sit somewhere with no I also took Advil.

    Reoccurance worries? I don't think mine will ever be completely gone...but it's just keeping me more vigilant to check things out, which it sounds like you are doing, too....

    PET scan uptakes can also mean healing tissue, and other stuff, not just cancer.

    I can sympathize with the hospital stays....after my resection stay of 8 days, I was overnight for a lumpectomy for breast cancer, then 2 weeks later, in the hospital again for a small bowel obstruction for 5 days with another surgery.

    I guess my solution is an attitude that, even tho cancer is a part of my life, I don't let it have the whole thing. I do as much as I can to make me happy, and, well, let the rest take care of itself.

    PLEASE keep us posted...

    Hugs, Kathi
  • KierstenRx
    KierstenRx Member Posts: 249
    I'm sorry to hear that you are having pain. I hope your results will show no recurrence, however there are so many options if you do. I was diagnosed at 32 also with stage III rectal cancer in Sept 2006. I am currently NED. I also had to go through obstruction surgery and adhesion removal last July (not fun). I understand your worry. I would also be reluctant to wait and see. I think you definitely need to look at the uptake from the PET more closely. I will keep you in my prayers and send positive vibes for a good outcome.

  • valley
    valley Member Posts: 94

    My husband was diagnosed Jan.06 stage 3 rectal cancer. Had chemo and radiation then lower resection that went well 5 days in the hospital and then more chemo. Had his first pet scan in Dec. 06 which showed positive uptake at original tumor site. He has had pet scans every 3 months since Dec. 06 all have showed this but with no increase. Stays the same. He has had 4 biopsies all came back negative. He had an endoscopic ultrasound the doctor thought for sure by site that he was having a recurrence but the biopsy said different again NO sign of cancer! It was imflammation and radiation colitis. They are keeping a close eye on this he is scheduled for a sigmoid on Tuesday 02-19 to biopsy this again. Hopefully it will show signs of improvement. He has no pain more frequent bowel movements. Hope this helps. Good luck keep posting!