Finally had my PET/CT done, the Good and BAD

[Mike Monaco]

I have been holding this off due to both the amount of radiation and the likelihood of finding out more than I wanted to find out, but it seems I ended up getting both of these.  My brother kind of talked me into it since he had to go through it about 2 or 3 years ago for his lung cancer and it worked out well for him, enabled him to  find out it was only one nodule that they could take out without too much problems and he is still  cancer free tll now, so I was hoping for the same.  Almost got it too.  THe nodule is still the same size as it has been since July 2016 and they said it had a SUV of 2.6, according to the doc, not too bad.  He said I can wait and watch for now, but eventually it should come out because it may decide to get started up again, than he hit me with a 2x4 in the head.   He asked . me  about any GI issues and I told him about diverticulitis and a perforation surgery I had this past July.   .   

My GI issues have continued more or less, but 2017 has some improvements in long time issues,ie constipation and bloating which I was able to quite down with probiotics. It took a lot of experimentation but it finally happened,  thank God!

Anyway the doc continued by saying a number of issues appeared in the PET, including villous adenoma, primary  colonic carcinoma, scattered mesenteric lymph nodes and stranding of sigmoid mesial colon.  Prominant metobolic activity in the sigmoid colon, SUV 9. 

So basically, how much trouble am I in, both with the lung and gut? This makes the Lung cancer issue seem not bad at all.  I am really sick about this, did not expect hearing this issue, just thought my GI problems were more or less what they have been.  I feel like I have been beat up with a bat and left for dead.  Hope someone has a cheeeful view to this all.   I know I have inflammation, the docs had said that and I do use antibiotics to quell it down as best I can, but this was a shock.   BTW, I have a colonoscopy scheduled in 2 weeks,so some cheerful words to hold me til then would be appreciated.  Thanks for listening.    John

 

 

[PaulaC]

5 hours ago, Mike Monaco said:

John, I’m new to this too, so don’t have any advice based on experience. I know how crazy I felt when I was told and just hearing from some in here I was more settled. Praying you’ll have a successful surgery in a couple weeks and get something going to attack the other areas. 

We’ve got this!

Paula

 

[Ann Cronin]

Good morning, Mike.... John?

I'm a newbie as well so I can't speak to all the medical lingo described from your PET scan. I feel like I've learned quite a bit on some topics since Jan 14th (my D day). Unless I'm completely misinformed, many things can cause areas to "light up" on a PET scan. Infections can cause lymph nodes to swell and light up. I've also learned that the only proof positive way to diagnose cancer is with a pathology report of an actual biopsy.

With everything you describe in regards to your GI issues/procedures I would almost expect the PET to reveal something going on related to GI.

In just 7 weeks I've learned that even though scans are used as tools in diagnosing cancer and other things, they should not be used as confirmation for cancer. They can confirm suspicion, that's it. I've also learned that once a cancer suspicion rears it's ugly head, many medical professionals can't open their minds to anything else. It's ALL about the cancer. In my case, I had pneumonia due to a lung infection. They didn't treat the infection, it was all about the cancer. (I'm fully aware that an antibiotic isn't going to cure cancer)  After 4 weeks I finally, basically begged for an antibiotic to treat the infection (I was in pain and coughing up crap). I was told "Well, your symptoms are probably caused by the mass in your lung". Finally prescribed an antibiotic and In 12 hours I felt amazing... after 3 days I felt completely healthy again. No more pain, no more coughing up crap.... 

I've had some trying times in my life, a crisis or two that I thought I'd never get through..... but this??? Yeah, this is some serious emotional turmoil. I can only advise based on my own experiences. I have to draw close to God in good times, since my diagnosis I've had to crawl into His lap and stay there. 

I've already read several books related to dealing with this ugly disease and they've helped quell the feelings of despair and loneliness. As I mentioned, I've been through some rough times but nothing has made me feel so lonely as this damn disease. I have a good support system, 10 supportive people could walk through my door and it wouldn't put a dent in the lonely. My faith lifts me out of the loneliness but I have to be honest, I've been on a rollercoaster........ emotional chaos. I'm hoping once I get past the newness, shock, raw truth and get a final diagnosis and treatment plan in place, the rollercoaster won't have so many steep hills and deep pitches.

I expect you'll get some good responses here from some awesome folks, the moderators are truly special folks with a ton of knowledge and insight.

I can tell you this with complete confidence, you are NOT alone!!

God Bless,

Ann

[Tom Galli]

Mike,

I can't suggest a cheerful view over a high PET return.  Like Ann said, a PET is an indicator; a biopsy is the determinate.  I assume your GI doctor performing the colonoscopy will obtain a biopsy.  But, you've got to wait two weeks for the procedure, then like more time for the biopsy.  I don't know enough about GI biopsies to hazard a guess on the results delay time.

Moreover, about the only knowledge about colon cancer is that I don't want a diagnosis so I can't begin a conversation on treatments.

I do hope the time passes quickly for you and the biopsy shows no evidence of disease.

Stay the course.

Tom