PET Scan

[Alucard]

Hello all,

I had a PET scan a few weeks ago and my oncologist is sending me to a surgeon because there seems to be something wrong with my right lung. Blood tests came back with everything normal, no elevated AFP, bHCG etc.. I also have another CT scan scheduled for tomorrow. And there is something new to it, the doctor wrote "Chest CT with fine cuts" on it, what's that about?

What kind of surgery will I possibly need? Is it RPLND? I am so nervous I can't think of anything else now.

This sucks, I will probably need more chemo, although that would be ok but surgery would really suck.

Al

[kewlkane]

Understand your anxiety cuz I've had 2 RPLND's. If you need it, then you need it & don't wait to do it! I'm guessing you've done the chemo stuff & now RPLND to remove residual masses, teratomas etc? If so, then you really want them out because even teratomas can change over time to other nastier tumors. After my 2nd one, found 1 tumor w/ only a part of it changed to choriocarcinoma, which meant more chemo cuz chorio excells at mets! And germ cell tumors tend to mets in 3 places - RPLN area, media-stinal area (just above lungs) or in the Pineal gland (in the geometric center of your brain). So really needing an RPLND the better of the three. You'll wake up feeling like you're stretched - & you'll look like the 'Michelin' or as a friend told me "Dude, you look like you OD'd on Botox!" Not to worry, its just lots of extra fluid that you'll soon pee away - note: keep your cathetor in til day 2 cuz you're gonna pee a lot & you're probably not gonna want to move much. I was discharged after 1 week after each one also, trick is to push yourself out of bed (fentanyl in your PCA helps lots!) & the sooner you get up, the sooner you get home & the fewer problems you'll have. As to your CT "w fine cuts" that's just your doc telling the tech to take extra views or slices w/ the CT which will help the surgeon plan your surgery which helps you since more time on the CT table means less time on the OR table. Good luck!!

[dadmo]

Alucard:
I'm sorry about the problem you seem to have run into. drom's son had to have an RPLND along with surgery on both lungs and has come thru fine.

[Davie]

Alucard,

The very good news is that you have normal markers, which suggests no active cancer.

Something on you PET scan may have concerned your doctor, but I understand that PET scans are not typically used for non-seminoma TC, as it is not proved to be accurate. I have heard PET used for seminoma.

Medicine is an inexact science, and after completion of chemotherapy, if no residual mass remains (as illustrated on the CT scan), then you are deemed to be in complete remission. If a residual mass remains then depending on its size of it and the agressiveness of your oncologist/surgeon, they may surgically remove it.

In Europe, a standard has been agreed across all European TC cancer centres that any abdominal residual mass less than 1cm is typically not surgically removed as it is more likely to be dead tissue, and the chance of live cancer cells remaining is only around 5%. A residual mass greater than 1 cm is typically surgically removed as it is more likely to contain differentiated (mature) teratoma, and has a slightly higher chance of containing live cancer cells. However, when the surgery does take place, dead tissue is found in about 40% of cases, hence the inexactness of medical science (and then it is in effect surgery that was not required - hindsight is a wonderful thing).

Typically, if the residual mass is dead it will shrink between CT scans.

If you have a residual mass in your abdomen and lungs, I think it is typical to undertake the abdomen surgery (RPLND) first, as this surgery can influence whether lung surgery is required, i.e. if they find dead tissue after a RPLND, it is more likely any residual mass in the lungs is dead tissue.

I may be out of my depth a little here, but according to your signature you had choriocarcinoma. Now, I believe that mature teratoma is the differentiated form of embryonal carcinoma. I believe that embryonal carcinoma is just undifferentiated teratoma. The differentiation relates to how close the cells resemble normal tissue. Did you have embryonal carcinoma or mature teratoma in your primary tumour? I think if you just had choriocarcinoma in your primary, it's unlikely you have mature teratoma in a residual mass. For example Lance Armstrong had a high proportion of chorio in his primary and he didn't require a RPLND or lung surgery.

Choriocarcinoma is a rare form of TC (although 8% of TC patients do have focal amounts), presents in only 2-3% of patients. Therefore in the UK, with a population of 60 million and 2,000 TC patients annualy, you'd expect about 50 choriocarcinaoma TC patients annually. Given, TCs prevalence in Northern European/American males, I'd not be surprised if you are the only choriocarcinoma patient in Jordan this year.

Given this, I would personally strongly recommed that if your oncologist has not yet contacted a TC world expert (for example IU, MSKCC in the US and Royal Marsden in the UK), if it were me, I would insist that he does. Firstly, you want to make sure that you get the correct surgical treatment if it is required, but on the other hand you don't want to be overtreated and have to go through any unecessary surgery. It's easy for an oncologist to prescribe the standard chemo protocol. It's after the chemo, and world class TC expert stands out, because the decision over what further treatment is/isn't necessary is decided over seeing thousands of previous TC patients, sometimes over many decades.

Before I had my RPLND, I had read many threads which said that the surgery whilst tough, it was nowhere near as bad as the chemo. I totally agree with this. You have done 4xBEP and that is the hardest part. I hope you don't require surgery, but I hope I can reassure you that if you do have to have surgery in the future, the surgery is not as bad as you think.

Davie

[Alucard]

Update

Hey guys,

I just got back from the surgeon. He said he doesn't recommend a surgery right away because one of the big boys in my right lung is now 3.5cm (it used to be 5cm) so I'm going to see my oncologist in two days to see what's the next step.

I'm so happy the size of the tumour is not so big anymore but my chest still feels like crap. Gotta take some painkillers.

I met a guy with TC in real life today, he had seminoma and lymph node mets but he's clear now, that was quite exciting, it's good to see you can really get cured.

You can make it people, stay strong.

Al

[Alucard]

Hey,

I got back from the doctor today, no surgery for me. He scheduled a CT for 10/12 so I guess it's over for now.

[dadmo]

Alucard:
That's great. I just hope the scan date you put down is a typo, I don't think you should wait a year.

[Alucard]

That should be 12/10.