I first wrote to you all last week about my husband who has (had?) IV SCC with primary unknown. He finished his treatments Nov21. He just had cat scans taken last week and the tests came back clear. I have a couple of questions:

1) We have been told pet scans reveal more than cat scans and MRI's. Originally we were told he would pet scans taken after treatment but last week they only did cat scans. I asked his chemo doc why not the pet scans and he just said "he doesn't need them" and dismissed my question.

We then went to see the radiation doc. He was happy that the cat scans came back good, but seemed surprised that the chemo doc didn't order the pet scans. He said my husband does need pet scans since we are dealing with a primary unknown. However, since we already had the cat scans, our insurance won't pay for pet scans now. He said we will wait another few months and then schedule the pet scans when insurance will cover them.

What is the difference in the pet and cat scans? Is one more reliable than the other? Is it common for them to only do the cat scans after treatment instead of the pet scans?

2) Jimmy's cat scans all came out clear. Both docs said this was very good news. Of course, I too am very glad that these scans are showing clear, especailly considering they originally painted a very grim picture of my husbands future and the ability to beat this thing. But, I thought if his tests came back clear I would be so excited and all the worries would end. However, I'm still feeling a lot of anxiety and have worries. I am still on this emotional rollacoaster that doesn't seem to end. For some reason, I just don't seem able to let it go.

I've been reading posts on here and after good news, everyone seems so happy and excited. Are my feelings of doubt normal after receiving good news, or am I just seriously over reacting and being some kind of "drama queen?" I don't know why I'm not just exuberant with joy! Please be honest with me. Since the scans came back clear, logically it seems I have no reason to have these worries and negative feelings but I don't know how to get past them resume the normal, happy life we had. I still feel like I'm drowning even though I can see the light above. Help!

Thanks, Vickie

Vickie,
PET scans, early post Tx, often show false positives due to scar tissue. You are better waiting a little while for a PET. I don't understand the insurance issue however - they are different types of scans for different purposes.

It's not that PET scans offer "more information", just a different type of information and scans, in themselves, are not the total diagnostic package anyway - just a small component.

In my case I had a pre Tx PET, MRI and CT scan.
I had a mid Tx CT. Subsequently, post Tx, annual MRI's and a chest x-ray ever since.

The difference between a PET and a CT are:

CT: is basically an x-ray that takes a number of slices and a computer generated 3D image can be reconstructed from the slice data.

PET: Uses an injection of glucose that has been irradiated in a cylclotron. Cancer cells (and healing tissue as well) will have a greater uptake of the glucose, thereby concentrating the radioisotopes which will show up on the images as a black spot. Most PET's are full body (or torso anyway) scans.

Newer tecnologies combine PET and CT (PET/CT) and result in a much more accurate scan.

I would certainly feel good about clear scans though. I just got my 3 year MRI clear but I still take it one day at a time. Try to stay in the "now".

Yes - your feelings of doubt are normal and it took me a long time to start feeling good about the whole deal (2 years to be exact - that's when the recurrence rate drops considerably). We'd be more more worried about you if you weren't a "drama queen" at this stage. Please vent here all you want.

Hi Vicki,
I am almost three years out from end of treatment and I have never had a PET scan. I had a CT scan before treatment and after, and I have an annual chest Xray.
Glad to hear the good news about your husband!

Vicki,
You are not over reactive but you really need to calm down and overcome your anxiety at this point. After all, your husband has got the best scenario with a clear report now. Close observation is still essential but too much worrying is not necessary.
Like Minnie, I never had a PET scan and for the follow up tests, I had CT scan, MRT, ultra-sound and chest X-ray.
By the way, Minnie, I sent you a private message several days ago, which you have not yet read.

Karen

Hello Vicki,

You have asked some relevent questions we all have this early into the game. Remember you and your husband have to be your own advocates about his treatment. Learn all you can about his treatment plan and ask plenty of questions. Write the questions down ahead of time, you never remember all of them at the doctors visit.

Go to the search engine at the top of the page and you can read alot of good information that may help calm your fears.
You want to throw everything at this the first time, It is a very unforgiving diaease.
Enjoy the good reports. It's a good sign.
Ask any question you can think of and someone with similier treatment will respond. Gary is one of the most knowledgeable posters on this board.

All my Best, Danny Boy

Vickie - I, too, sometimes wonder when it will be okay to relax and not worry every second about what might happen- tomorrow, next week, next month etc. I've tried to live moment to moment and take some solace in the doctors' positive comments. Some days I can do this pretty well, other days, forget it.

The uncertainty about cancer is very, very tough to deal with emotionally ( at least for me as a caregiver who wants to make sure that no stone is left unturned in the path to recovery). I would guess that with an unknown primary there may even be a bit more of the "not knowing" part of this horrible, horrible disease.

So, all this is to say that I think it's pretty natural to feel anxiety, especially when the completion of treatment is so recent. From all the postings I've read here, it seems like some people are able to get a little more relaxed as time goes on, especially as Gary says, when they hit some agreed upon milestones like 2 years.

One thing I've learned from my husband getting locally advanced cancer of the tonsil is how brave so many people with all types of cancer are because, let's face it, there are very few people who have had cancer of any sort that aren't left with a legacy of having to make peace with the fear of it returning.

John never had a PET scan and they seem to feel it wouldn't be helpful at this point. They went with ultrasound, chest xray, CT scan and MRI and then CT scan again at 7 weeks out. I asked about PET/CT but they didn't feel it was necessary and is only used in certain cases in Canada.

all the best
Mary

Vicki, as one caregiver to another [ and it sounds like you love your husband very much] I want to say that I'm thinking the shock you got when his cancer was diagnosed is now incorporated into your being. Hearing that a loved one has cancer sends us reeling into the unknown and most of us have no background to deal with it. Fear,anger,frustration and helplessness are just a tip of the iceburg of emotions that caregivers feel. I don't want to "assume feelings " for you, so I will tell you that in my case, when John got the 1st "all clear", I was on my knees saying "thank you", and at the same time wondering if we really were all clear. It turns out that we were not, so now we are in phase 2. Many people [and many of them are parcipitants on the forum] were fortunate to beat cancer the 1st time. But I am willing to bet that each of their caregivers or loved ones has been through a tremendous emotional turmoil during the treatment. Your "worries and negative feelings" are normal reactions to the threat you have faced with Jimmy and your life as you knew it. This has scared the hell out of you. It isn't going to be easy to do, but you[we] are going to have to find a new "us" and a new normal. The silver lining is that if this teaches us to look forward to and appreciate each and every day we spend together, we will have learned so much about what life, love and sharing means. My best to you. Be strong and be loving. Amy

Thanks to you all. I have read your replies over and over again. I feel much better about not having the post pet scan done. It seems many of you have not either. I was just under the impression that a pet scan would show more than a cat scan and as Mary pointed out, I don't want to leave any stones unturned with this unknown primary thing.

I also know all too well what Daniel said about this being an unforgiving disease. Jimmy's sister and father both passed away with brain tumors. His best friend past this past summer with colon cancer, and one of my best friends is now battling breast cancer that has spread to her esophoagus (sp?) and stomach.

Please don't get me wrong - I am very happy and thankful that his tests came back clear, especially considering all the negative going on around us. Normally, I am a very optimistic and proactive kind of person. It's just that I had it in my mind that if the tests came back clear, this emotional rollercoaster would end and everything would go back to normal again.

What I'm gathering from all of your posts is that most all of you have had and occasionally still these same doubts and fears at some time or another. What I need take away from your post is try "not to worry TOO much", "enjoy the good reports", "stay in the now, take it one day at a time", "make peace with the fear of it returning", and probably one of the most important..."find a new normal."

All of this is excellent advise and I will try my best to heed it, find that silver lining and enjoy the time we have now.

Thanks again to all of you!

I know it's been a while on this post, but I just experienced an example of what can happen on PET/CT vs CT alone.

Just went in for my 3 year out PET/CT, regularly scheduled. Been dealing with a RAGING head cold/sinus infection for a couple days, one of those things that's been going around here in China and the wife just got over, after 2 rounds of antibiotics. Thought about postphoning the test, but timing for that day was best becuase of having to go to Hong Kong between trade shows etc when hotel availability was good, etc.

So do the PET/CT anyway, even though I felt so bad I didn't even enjoy the traditional night before pre-pet CT steak dinner before hand. CT shows clear, no issues. But of course because of the way the PET scan works, the sinus infection lit up the whole nasopharynx (spelling?) region big time.

The ENT wasn't concerned considering the head cold, sore throat etc, the ONC offered to put the scope up my nose for a double check. I blew my nose, coughed up a chunk of goo, and declined that offer. His take was that the PET didn't show localized uptake but he whole region, and the CT didn't show anything, and the infection would have that affect on the PET scan so probably not an issue. Did ask if I had been around any birds (checking for bird flu), I coughed up a few feathers and said no.

Lesson: Don't do a pet/CT with a cold.

Vicky, I don't mean to make light of your feelings, but sometimes a little humor helps. The news your husbands scans came back clear is very good news indeed, but it will be hard to overcome that strange feeling of impending disaster. That will take time. I still go through some very nervous times every so often, even at 3 years out.

Bob

Vicki- I know exactly how you feel and although Charlie has not had a pet or ct scan to tell us that he is all clear, we get good news and I am happy for an hour and then the fear comes back. I felt like why is everyone so happy and here I am still petrified. I was nervous about my own reaction- until I read your post and Amy's and BOb's responce.
Amy-that was one of the wisest things I have read and you hit it right on, we love them so much and we had our worst fears recognized.
I am just so relieved that I am not alone, but I do think that when (Pray to God) Charlie's test come back clear- I will set our wedding date and look forward to the rest of our lives together.