Post-chemo RPLND - Questions

[Davie]

Directly after completing 3xBEP at the end of May, I had a CT scan which identified a 23x16 mm residual mass in my abdomen.

Given that I responded well to chemotherapy, my oncologist and urologist decided to keep the residual mass under surveillance, and repeat the CT scan 3 months later to determine any further shrinking of the mass. If the mass continued to shink it was more likely to be necrotic tissue. I was advised in May that the probability of an RPLND was 50:50.

Well the 3 months was up yesterday, and I had another CT scan. I'm going in for my results next Friday.

I'm preparing myself for the worst, but hope I get good news and avoid the surgery. However I am realistic and know the odds are even that I require the surgery, so given this I want to be fully prepared during the consulation.

Therefore for all you RPLNDers out there, I would really appreciate if you could maybe advise me of one or two of the most important questions I should ask the surgeon prior to the surgery.

I don't wan't to go into the consultation unprepared, and find that I come out of it with more questions than answers.

Many thanks for all your help in advance.......Davie

[dadmo]

Davie:
I just have a question and I'm sorry but I didn't go back to check your older posts. Did you have teratoma as a component of your original tumor? From my prospective you are on surveillance and with no change to the tumor I don't know why they would now want to do an RPLND. Typically that is done 6-8 weeks after the end of chemo.

The most important questions:
Why do I need the operation now, shouldn't I just stay on surveillance.
How many have you done. (less they 25-30 is unacceptable, if you were my son the number would be closer to 100)
Can you do nerve sparing.

[Davie]

The pathology of my testicle indicated "scanty foci of mature teratoma", which basically means a tiny, focal amount.

For some reason I had a CT scan directly after chemo. The second CT scan last Thursday was to determine any change in the mass. If the residual mass stays the same size or grows, it's likely it's mature teratoma and not necrotic tissue. If this is the case, it'll probably be a RPLND for me

Thanks for the tip on nerve sparing. I understand the surgeon has done this surgery 350 times, so if I need it, hopefully I'll be in safe hands.

Davie

[dadmo]

I have to agree that if the nodes aren't shrinking they should come out. I'm sure you know that teratoma can become cancer so it needs to be removed. 350 is a good number so you can rest easy on that one. I know the whole RPLND thing stinks but, as you know from this forum, you will get through it just fine.

[indiana9]

Davie,
That is a big residual tumor and I would be asking my doctor how it is affecting my other internal organs: kidneys, pancreas, etc. If he is confident that it can remain inside, ask him how long it will take to dissipate and be absorbed. If you can feel this inside of you, there may be some comfort in having the surgery just to get it out, and not have to go through intermittent wondering and anxiety about what is going on in there. If you leave it in, you will continue to have periodic abdominal CT scans while getting rid of it eliminates the need for these scans. I had a softball sized residual tumor removed because of a positive PET scan that turned out to be a false positive; however, I could feel the mass back there and while my doctors told me that I "probably" would have been OK without the RPLND, I was glad to have the mass removed and not have to feel the nagging pressure in my back any longer.
Brian

[danebert]

2.3 x 1.6 cm is quite a small tumor. If a node is 1cm or 10mm it is concidered normal as far is radiology is concerned. There is about a 45 % chance of teratoma, a 45% chance of necrosis and 10% or lower liklyhood of it being cancer. Either way, it needs to come out because, as dadmo said, it can turn cancerous and this degeneration into cancer commonly involves non germ cell tumor components which make it far harder to treat. Dr. Einhorn and Dr. Foster of IU would probably recomend that it come out. Also, by the end of the 2nd cycle of chemo the tumor has done most of its shrinking. ( most of the time but not always) At any rate good luck!

[indiana9]

Thanks Danebert, I misread 23 mm x 16 mm as 23 cm x 16 cm. Yes, that is a small tumor! And I am metrically challenged today! :)
Brian

[danebert]

I forgot to answer your actual question. A very important question would be to ask the dr. if can perform the nerve sparing procedure in a post chemotherapy setting. In addition, you can ask if they do frozen sections of the tumor during the operation, which might change the interoperative approach depending on what they find. As always you can ask him/her what their complication rate is and if they have any published reports in leading oncology / urology journals. You can never be too blunt or forward when it concerns your future or well being. Again, good luck and keep us posted.