All clear? Or not?

[Stewsbetty]

So I went for my followup appointment with the oncologist today. My last chemo was one month ago and my CT was done a week ago. I was fully expecting to hear the hurrah! You are done! What I got was unexpected and a little confusing. I had 2 suspicious lymph nodes after surgery and we have been watching them all along. They have shrunk - which I have always taken as good news. However the oncologist wants me to have a PET scan. Now, to all of you Americans that might not seem like a big deal, but I live in BC, Canada and there is only one PET scan location in the whole province. 8 hour drive from where I live. He wants to see whether the nodes were or are cancerous and possibly have surgery to remove them. I was completely taken aback. Never once during treatment did any of the Drs mention this possibility. At my last appointment while still on chemo I was told for follow up I would have bloodwork every three months and a CT once a year. Oh and a colonoscopy at my 1 year diagnosis date.
Anyway, I am not really worried - there were no mets found on lungs or liver - just surprised at the situation. I had thought it was all over but now another test and possibly more surgery. Kind of confusing all round for me.

Beth

[ANDRETEXAS]

I can only state that I had a CT-scan two weeks after I completed FOLFOX. The report came back as inconclusive. The oncologist requested a PET scan which I had around 10 days later. It came back NED. I believe your team just wants to make sure everything is OK. These follow-up scans are more prevalent in the beginning after chemo than they are later in your recovery when they have achieved a basis point for you. I wish you had better options for getting a PET scan (8 hours is a long way). But, if that was my only option, I'd be filling up the car. Best of luck in finding a closer option. Andre

[PainInTheAss]

So I went for my followup appointment with the oncologist today. My last chemo was one month ago and my CT was done a week ago. I was fully expecting to hear the hurrah! You are done! What I got was unexpected and a little confusing. I had 2 suspicious lymph nodes after surgery and we have been watching them all along. They have shrunk - which I have always taken as good news. However the oncologist wants me to have a PET scan. Now, to all of you Americans that might not seem like a big deal, but I live in BC, Canada and there is only one PET scan location in the whole province. 8 hour drive from where I live. He wants to see whether the nodes were or are cancerous and possibly have surgery to remove them. I was completely taken aback. Never once during treatment did any of the Drs mention this possibility. At my last appointment while still on chemo I was told for follow up I would have bloodwork every three months and a CT once a year. Oh and a colonoscopy at my 1 year diagnosis date.
Anyway, I am not really worried - there were no mets found on lungs or liver - just surprised at the situation. I had thought it was all over but now another test and possibly more surgery. Kind of confusing all round for me.

Beth

I was in the same boat as you. One lymph node lit up on my original PET but was too close to my spine to be removed during surgery. I was told up front we would check it when everything was done. I had a "then what," conversation at one point. I was told we would need a biopsy because inflammation can also cause alymph node to light up, so it may not even be cancer. If it was cancer, there were several options including Gamma knife, since surgery was out of the question (they said).

I learned all this at diagnosis. This was all very scary, but I decided to believe it would get zapped by the chemo and radiation and be clear. So, I finish treatment and we tried to schedule a PET to check it. I live in America. Insurance denied it. My Onc did an appeal. They still denied it after he explained why we need it. Really? I was so frustrated because a CT would not have shown anything since it was never enlarged. I asked about getting an MRI since I had heard some were getting MRIs instead of PETs if there was no lymph node involvement. He said an MRI was as accurate as a PET (thank god for this board!). So we finally did an MRI of pelvis and abdomen (to make sure peritoneum was clear also), and I was so happy to finally learn it was all clear.

Hang in there!

[DarknessEmbraced]

I hope your PET scan is clear!*hugs*

[mct]

Hi Beth...I'm in Ontario. Just checked google to see how may PET scan machines there are here in Ontario. There are 13. I'm shocked that BC has only one. Seems crazy. But, worth the long drive to get the results. Wishing you the best for clear results.

[Achilles Torn]

Hi Beth,

I'm in BC and had to really push for a PET scan (long story) which was in Vancouver (I live in the LMD so no travel involved)... It was vital as it revealed I was stage 4 with extensive distant lymph node mets which significantly changed my treatment plan.

For you I think it is likely that, with only a few reactive nodes, they have resolved with Chemo (or were not cancer to begin with) but I would get the PET scan to check for peace of mind.

In a nut-shell I'm betting you are clear but I would still go for the scan. Feel free to PM me if you want any advice navigating the BCCA....I've found some really good people there (and some not so good).

Cheers
AT

[Stewsbetty]

Thanks all for sharing your experiences. I am definitely going to travel for the PET scan. Our family is doing a vacation in Mexico next month and we will fly out of Vancouver (home of the PET scanner so it should align with that trip. I was just thrown for a loop to have all this come at the end. We had asked about options on those nodes from the beginning and it seemed like everyone just figured that either chemo or surgery recovery would take care of them. Nice to hear that the PET scan confirmed NED for you, Andre. The Dr also mentioned the gamma knife if surgery wasn't an option. I am not much of a worrier and i do believe that the scan will show the all clear. So I guess the big celebration can wait another month. Just give more time for my tastebuds to recover.

[Stewsbetty]

Got my PET scan results today and it is showing that the nodes are still cancerous. The oncologist feels that surgery is the best option as they don't seem to be too close to any major arteries or veins. She also mentioned radiation but I would prefer surgery. Anyone out there that has had a second surgery for lymph nodes?