Kendall

Thank you for the update. Its always nice to hear some positive news about patients recoveries. Its wonderful news the tumor is gone. Going back to work even part time can be the greatest therapy there is. It makes you feel somewhat normal again to get back into that familiar routine.

Please try your best not to get overly upset about the scan. There are many many flase positive readings. I know its easier said than done when results dont come back the way you want. The false positive happened to me and it sure can scare you. Inflamation or an infection can cause them to light up wrong.

You wrote about accepting the journey as never ending. Sometimes I start to think that way too. I try to remind myself of how far Ive come and not how far I still need to go. It does help ease the feeling of helplessness and that its beyond your control.

Please remember that OCF is here for support for you as a caregiver too. Being a caregiver to me seems like it might be just as bad as being the patient, maybe worse. Ive been the patient. I dont know how caregivers can do it and always keep up the calm, caring and helpful mannerisms. It must be extreemly stressful to hold in your feelings to put the patients feelings first. Dont forget you can always lean on us here at the OCF forum for support.

Hoping for better news to come about the results.

Kendall --

DO NOT get overly concerned about the PET scan results. I had my first PET just about the same interval after treatment as your husband (my tx ended 7/11/07, 1st PET was 10/2/07). Report came back with three lymph nodes "concerning for metastatic disease". My MO, RO and surgeon all looked at the report, looked at the scan and said I had nothing to worry about, just effects of treatment. Sure enough, when scan was repeated in December, two of the suspect areas were gone and one was less obvious.

THere are any number of threads on this site devoted to PET results and false positives. Do you know what the SUV values were for the nodes showing up on the scan?

Hang in there!

My last Pet showed false positives. That was a month ago or so. Dr said that happens too often but it is a great test.

I see the PET as being a flag-raiser to direct the various docs' attention and check out on the CT. I believe I can see my tumor on my last MRI/CT/PET scans.

Hi all,

Thanks for your words regarding the petscan. Unfortunately, the MO, RO and surgeon all agreed that surgery is the best option at this point. The 'suspicious tissue matter' is apparently too large to be considered scar tissue or residual effects of the initial treatment. So, surgery it is, on 11/14. I am glad the surgery is a little far out as that will give David more time to heal and gain strength. On the upside David is continuing to eat a little bit more day be day and is starting to seem a little more of his old self. Day by day, it is what it is...my mantra these days.

Kendall

perhaps asking for a repeat scan or a ct to confirm concerns may be a good idea prior to doing another surgery when so many false positives are common place? I asked my surgeon to do a second CT scan prior to doing the surgery because it had been a few months and I wanted to know that all was confirmed and all was known prior to them going in ... he was glad he did the second one, as the site had changed size etc by that time, so they knew more when they were in the surgery room... i would definitely want a second test to confirm prior to surgery based on a PET scan being done so close to the end of treatment ... doesn't take much to light those up.

That's why a combined PET/CT scan is so helpful -- The slices in each view are coordinated -- The Radiologist and Doc can see the slice lit up in the PET and look directly at the same slice in CT.

Hi Rita & Pete,

The situation is that he did have both a Cat and Pet in the last 3-4 weeks and they both showed basically too much activity to be on the safe side and wait a month or two to be tested again. The ENT doctor showed us a comparison of the the cat done before treatment and the cat done after - not a lot of change in that there is still a significant mass, although it is only obvious when looking inside; there is not a big lump on the side of his neck any longer. David wanted to have surgery first from the beginning, but the doctor's thought they could get all the cancer with radiation and chemo. At this point, I think he just wants it out however it happens.

Thanks for your concern...I really don't know what to think right now. Really, if it is that serious (and I really do think it is; these doctors do not like to cut if they don't have to) I think it is better to do it and hopefully increase David's lifespan. This stuff is likely to come back somewhere and I would rather eliminate as many chances for it to do so as possible.

Again, thanks for your support!
Kendall

sounds like you are moving ahead with some good information then. have to go with your heart and do what you can to beat it. i wish you the very best and hope to get a good report as you move forward in the process. keep on keeping on and never give up.

Hi Kendall,
My boyfriend didn't vomit too much but I found that 5 of the nutrician drinks were too much for Martin, but he could manage 4. Also, if he sat up for 1/2 hour at least after the feed, he didn't feel nauseaous. Martin had some anti nausea tablets called Ondemet and they seemed to help. our hospital gave them as standard.
Maybe he also needs a kick to get him back on track. I hope you 2 can get through this and I do hope he listens to you and feels better soon.
C