Hello,

I have found useful answers to my questions on another posting (thanks for that) regarding f-up PET/CT scans but I would like to know a bit more about your experiences.

Since my husband has completed his 35 treatments of RT in April 06 (SCC of BOT/modified radical neck dissection in Jan 06), he had no f-up scans of any kind. He just has a clinical examination every 6 weeks.

It appears that in New Zealand this is the way to go as they hane no PET scan machine. There is no investigational PET scans and doctors send patients to Australia when needed. Needless to say that there is absolutely no PET scans post treatement! Actually this is what happened to us in December 05 when we presented our case (after reading loads of journal articles) to the oncologists/ doctors in the light that after un-conclusive biopsies, David was about to be treated as a "unknown primary". The funded David and he had a PET-CT scan in Aussie. It showed the location of the primary!!

Now we are back to square 1 with this Pet-Ct scan thing. We have discussed the issue with the RO and surgeon and they have strongly discouraged us to have one. To their opinion, it seems that there is high rate of false positives and little to do if metastasis show in other organs. Consequently we have looked at the literature on the Net. David has also contacted some ENT specialialists in Aussie who appeared to be sceptical about our RO and surgeon approach here.

I have to be honest though, the doctors are open-minded and will look at any avenues helping but they also have the constraints of working with budgets in a public system. There will be colleteral damage. We have to make sure that we take our health issues in own hands.

Despite the fact that we have given all the journal articles on PET-CT scans f-ups to out RO ( who is the one following David), yesterday we were told that no PET-CT scan will be funded. We told them that all we need at this moment is a referral form and we'll pay for it. We discussed about it last night and it opened an all new road that we didn't know existed..... if something should come back positive and there is nothing to do, do we want to know????

David has suggested that we asked the experts, so here I am!! I must say we are confused. Has anyone have some thoughts on these issues both f-up examinations of any kind and would you like to know or not???

From down under, marie-lyne

I think that the attitude that if there is a distant met there is nothing to do is just BS!! There are surgical options if it is small, there is RFA to keep in under control while chemo has a chance to go after it, most of the time there is something that can be done. Even if it is enteriing a clinical trial on an experimental drug that may be the difference on which side of the grass you are on, or living for several years more. Will it always be successful? No, but that does not mean that a patient should be written off just because this has moved out of the local area. We have had posters here that have dealt with these issues and are still around. Are they still fighting? Yes, even 2 years out from finding the distant met. But continuing to fight is what it is all about. I bet if it was one of those docs that had a distant met found in a PET, he would be calling everyone that he knows to find some way to deal with it. I don't think he would roll over and play dead.

There are lots of postings archived here about PETs and the false positives that go with them at least 20% of the time. So it is not an absolute test, particularly for cancer. But if you don't find things early you can't resolve them before they get out of control. If something is hot in the PET, then you go and find out why... if it's a false positive you celebrate, if it's not, you dig your heals in and look for options.

I fully agree with Brian but the NCCN oncology practice guidelines have yet to specify PET or PET/CT for followup and many countires use those standards as well as in the US. PET's and PET/CT's are among the most expensive scan. I had one for triage purposes only. At least I get an annual MRI and a chest x-ray.

I think that the real issue here is the looming bankrupting of the medical health care system once the baby boomers crash the system all at once, which we are poised to do (along with social security). The same thing happened over 50 years ago with birthing units. The growth industry in the next decade will be the funeral business.

Hello Marie-Lyne

My specialists in Sydney do not believe that I need follow-up scans because of false negatives, unecessary biopsies etc. Consequently I have not had any f-up scans since I finished treatment. However I could have one if I insisted. I have had scans for other problems, always with cancer in mind also.

At first the lack of scans bothered me. My physical exams are very thorough and my general health is monitored closely by me and my gp. Personally, I feel relaxed about it now but at the same time I agree with Brian. Survivors of other cancers have many scans.

If you can pay for a scan then go for it if it will ease your minds. I had a PET scan at diagnosis and felt so relieved to find that no other major organs were affected.

I understand how you are feeling, love and best wishes to you both from Helen

Hi marie-lyne, I am a bit surprised to learn that follow-up scans are not arranged after treatment as I think it very essential to find out how effective the cancer has responded to the treatment. Other than Pet/Pet-CT scans, there are also ultra-sound, MRI, CT and Chest X-ray which can do the job equally well. I didn't have PET scan all along and just had a PET/CT scan 3 years post treatment when the tumor marker showed some abnormal signs. Apart from it, I had other scans annually and my situation is very closely monitored. If I were you, I wouldn't take any risk. I couldn't afford to miss anything in my body again.
Good luck,

Karen

Karen, you mention tumor marker activity in your post. Was this a marker for your oral cancer? Early in our journey to dx, we were told by two ENT's that there is no marker for SCC oral cancer. Did I misunderstand?

Joyce