Worried about our son

[drom]

We are going on the operation hope right now. My guess is salvage would be next.

It may just be a bump in the road but what has me really worried is the back pain. Even though he says it is a 1 or 2 on the pain level why is it happening? Can the cancer start up again so soon after chemo?

[dadmo]

Domenic:
I would be surprised if the cancer was acting up so quickly after the chemo. The back pain may simply be associated with the swollen nodes caused by the teratoma. Hopefully the RPLND will take care of that. keep the updates comming.

[justinsmom]

Justin's abdominal tumor caused back pain due to the pressure it put on his internal organs, kidney, ureter, ect. Because of the make-up of Justin's original tumor biopsy-embryonal carcinoma & teratoma his oncologist was always fairly certain he would have to have the mass removed surgically-his AFP was 11 before surgery- They had to remove all his lymph nodes but thank God, the tumor left was benign (non-cancerous) the BEP killed any active cancer-praying the same for your son-by the way did he do 3 or 4 rounds of chemo? Lanette

[drom]

Pet Scan Hell

Well it just won't end. After a good meeting with Dr. Scheinfeld on Thursday we went for a Pet Scan. Just spoke to Motzer's office and they said while the test was not conclusive there were some light spots on the lungs and they want to wait for a month and see if the numbers continue to go down.

What is the point of these tests if they prove nothing, his numbers are very close to normal, remember he started over 6,000. Alex wants this thing to end but we seem to be going in a circle and I know everyone here swears by Motzer but I feel like we can't get a straight answer out the man and we are going nowhere fast.

We work hard to keep Alex's spirits up and then we go to Sloan, sit in that nightmare of a waiting room of Motzers for hours and get no answers. Heaven forbid he come to the phone.I know this is not an exact science but throw us a damn bone here.

Sorry to vent, I wanted to ask if anyone has any experience with Pet Scans. I know the theory but I now wonder if they prove anything.

Thanks,

Domenic

[Mom]

When I asked my son's oncologist about doing a PET Scan he said that he didn't advise it because they were inconclusive and very dependent upon the reader. Maybe in some cases they are great but in TC I am not sure how much info they provide. Probably if you are searching for something, it will be found in a PET scan but I am not sure it will prove anything. Take solace that his markers are pretty close to normal. That is very positive. Hang in there, Domenic. Alex has come a long way. Dianne

[dadmo]

Domenic:
Believe me we all understand your frustration. Vent anytime you want too, I did yesterday, it really helps.

[Hopeful]

hi Domenic.

My husband has had 5 Pet Scans through his cancer/chemo journey. Although they may not seem very conclusive, they do help to show where potential tumors or growth might be. Unfortunately, it doesn't pick up the microscopic cells that could potentially start to grow.

From the Pet Scans we've had done, his have been pretty conclusive and very helpful to determine treatment. But just remember, the BHCG is the true determinant factor of the cancer status.

Hang in there. It's definately a rollercoaster ride with the highs and lows.

Patti

[Don]

I think everyone of us here feels your pain and fustration as we have all played the ridiculous waiting game many times, over and over again.. Sometimes it feels as though the doctors forget how important these results are.. To them is just a indication of what presciption or futher test and visit to order while to use our lives our hanging in the balance by the results of that test.. You would also think that seeing how much money these doctors are being paid and how much of a life changing experience we are all going or been through that the doctor could/would just take an extra 5 minutes with each patient and explain what the plan of action is. A little bit of personality and warmth wouldn't hurt every once in a while either.. I guess the Doctors can't get to emotionally involved or they would all be clincally depressed by the end of their first week.. Sometimes waiting is the hardest part. I know I've been playing the waitinig game myself lately and it sucks. I can tell you that the Petscan has been extremely helpful to many people (myself included) and it does take time for the radiologists to go through the scans with a fine tooth comb.. Try to look at it this way-- As hard as it is to wait for results, the longer it takes, the more cautiously they are reveiwing the scans.. Frankly I would be second guessing results of a scan that came back real quick as I would think that it wasn't completly checked!!! Hope all comes back clear!!! Good Luck !!!! DON

[drom]

Thanks for the info and advice. My wife and I just feel so helpless, Alex has come so far and now it’s like we hit a wall. We understand if we have to wait a month we will but it is so hard to tell him, he wants to get on with his life.

Emotions are so hard and as the parent/spouse/whatever we have to be strong, it's not easy sometimes.

We'll make it, I hope sooner rather than later.

[dadmo]

Domenic:
This months CURE magazine had a new term for people who are affected by cancer but not the actual disease. Co-survivor, it feels more accurate then caregiver.

[drom]

I was thinking that survivor just wasn't the right term; it implies surviving a natural disaster like earthquake, flood or tornado. Or even a murder attempt or a terror attack.

I refer to Alex as a winner, he is beating cancer and he will win. When someone dies from this disease they say "lost their battle with" so why can't the person who makes it win.

Just one of the stupid things I think about since this is on my mind 1000% of the time.

We will take co-survivor though, we've earned it.

[jdunn]

AMEN to that!

[Karen]

I was thinking that survivor just wasn't the right term; it implies surviving a natural disaster like earthquake, flood or tornado. Or even a murder attempt or a terror attack.

I refer to Alex as a winner, he is beating cancer and he will win. When someone dies from this disease they say "lost their battle with" so why can't the person who makes it win.

Just one of the stupid things I think about since this is on my mind 1000% of the time.

We will take co-survivor though, we've earned it.

Hmmmm....agree with the survivor term, but "winner" sounds like something you wanted to obtain and succeeded in...how about "cancer Conqueror"...the warrior of a battle hard fought!

[rlhawk]

Regarding the usefulness of PET scans

I had two PET scans that were much more helpful than the CTs in staging my disease and determining if the chemotherapy was working. I had to pay for the second one myself, then submit a grievance to my insurance company, who then reimbursed me. It was well worth it.