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Positive PET/Negative Colonoscopy

lakeishamknox
Posts: 2
Joined: Jul 2021

Hello, all! First time really joining the boards here. I forgot this resource existed and there is a reason I am circling back around.

A little about me: I was diagnosed Stage 3 Colon last March during an emergency exploratory to find a bowel perf. Baseball size tumor in the splenic flexure. 5 of 13 nodes positice with "extensive" tumor deposits. Although I had said very recently before that I would never try chemotherapy if it came to it, my wife and family kindly convinced me to give it a shot. Started FOLFOX six weeks later. Emergency room on day two with congestive heart failure. Ejection fraction at 15%. Discontinued FOLFOX. Found out it was likely FOLFOX + COVID + stress that worked together to nearly kill me that time. Shortly after, diagnosed with BRCA2 mutation.

i have stayed up to date on all visits, blood tests and scans. Hernia repair in January along the incision line. Both COVID vaccines in March. Some possible dark blood mixed in my stool, slowly rising CEA and CA125 levels over the last few months and some constant abdominal pain led me up to my 1 year PET scan mid June. Suspicious lymph node in left armpit with SUV of 3.9 they are attributing to vaccine. Concerning SUV of 10.1 present in my rectosigmoid junction led my oncologist to be concerned I am having a recurrence. I had a colonoscopy a few days later and there was nothing, not even a polyp. When i followed up with the onc, she was not convinced. She believes it is on the otuside of my colon and took my case to the tumor board. They recommend an MRI, which I will be scheduling today.

That was long winded, I know. But all that above has me pretty convinced I am having a recurrence or what I believe is actually just a continuation of the deposits or lymph nodes that were there during the surgery. My PET scan post surgery didn't have any abnormal SUV so this is all new.

Any experience with this that did or did not end in recurrence/unidentified metastasis? 

LindaK.
Posts: 506
Joined: Apr 2013

Hi, I'm sorry you're having to deal with this and worry about recurrence.  My husband was diagnosed in December 2012 with colon cancer.  After tumor was removed, he was staged at II.  He did 12 rounds of Folfox and within a few months started having similar issues again (abdominal pain, trouble on the toilet, etc)  He went for another colonoscopy which was supposedly clear.  GI Dr told him to lose weight.  He went to the oncologost, he said he didn't need any scan, went to the surgeon who followed oncologists recommendation.  Poor guy suffered and endedup in the ER and a terrible 21 day stay in a very poorly run hospital.  After 7 days, no scans were ordered, only x-rays -they were treating him for constipation.  Anyway, surgeon finally went in and found another tumor in his small intestines, which obbiously would not be visible on a colonoscopy.  a PET scan several weeks later (at a different cancer center) showed lymph node involvement too.  CEA was never a good marker for him, it was actually dropping while he was in the hospital waiting for surgery.

I'm glad your doctors are being dligent with scans and tests.  I hope they don't find anymore cancer, but it is possibly it's not in your colon.  It seems to me a PET scan is above all others, but I'm no doctor.  I hope you get some answers soon and that you're feeling better soon.

Linda

grammadebbie's picture
grammadebbie
Posts: 471
Joined: Jun 2009

Hi, So sorry you are going through this.  We are on a very similar path as far as diagnosing what is going on with our PET scans.  2007 Stage III Colon Cancer with lymph node involvement.  Partial colectomy and 11 chemo treatments.  Found lemon size tumor during emergency surgery for bowel obstruction.  Had been misdiagnosed for 2 years and had most of my female organs removed during those 2 years.

 

Now. after all this time NED I had a PET scan and it showed 2 areas near the original anastomosis  1 grape size and 1 peanut size.  Had colonoscopy and it was clear.  Oncologist sent me to surgeon.  Surgeon was upset that more testing hadn't been done.  Thinking that this is on the ourside of the colon he ordered a CT scan that came back clear.  Another PET scan showed the same areas as the first.  I didn't want exploratory surgery unless they knew it was cancer.  I wanted to go out of state to a Major Comprehensive Cancer Institute.  My surgeon ordered a colonoscopy EUS with needle biopsies at sight shown on the PET.  Woke up in the hospital and Dr. said everything look clear.  I asked if the biopsies came back clear....He said he didn't do any because it looked clear.  So I went thru all that and he didn't to what my Surgeon ordered.  Now I am waiting to see my surgeon on July 14th.  I talked to his medical assistant and he is very upset.  Soooo, I will see what the plan is and let you know.  Maybe you can have the procedure I was supposed to have.

I am anxious to hear how you are doing?  Praying for you and your family.

Debbie

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