Recurrence - Advice Needed

[David1969]

I was diagnosed last September and had my left testicle removed, this was followed by an RPLND in December. The RPLND showed 2 nodes with very minute amounts of cancer, I therefore had 2 rounds of BEP Chemo.

Things were going well until today, when I had the results of my 6 month CT scan. It showed to "abnormalaties" just under 2 cm in size. My oncologist was very surprised, he thinks it is a 35% to 40% chance the cancer has returned, but more likely it is teratoma. Not sure what to think at the moment as he has said if it is a reocurrence then I have a 50/50 chance of surviving. Has anybody else had a similar problem?

[Margaret]

David you will get lots of great advice here. The only thing I questioned at first was why the 2 rounds of bep and not 3? But again....Others know more than I do and I do not want to tell you anything incorrect. The experts here are surely on their way!

But I did want to say that you must be very anxious and I am so sorry that you may have to deal with this again. I am glad you are under the care of a doctor and I am sure you are in great hands. Let us know how you are.

My prayers are with you.

m.

[Karen]

What was your pathology from the I/O and the RPLND? Where are the "abnormalities"? Any marker elevation? Do you have a follow up CT or PET scheduled?

Regardless of your answers, for a potential recurrance I'd suggest you high-tail it to a center of excellence (Sloan, Dana Farber, Indiana) and hammer this baby once and for all. Do NOT look at the percentages...you are not a number, you are a survivor and will gear up for another round if need be.

[Fed]

David,
Since you had an RPLND, where are the alleged mets located? It's important to know your I/O and nodal pathology to see what it is. If there is any teratoma, then more chemo would be useless. Regardless, you should follow Karen's advice and go to one of the top centers ASAP. I hope that you do act quickly, as well. Let us know if there's any way we can help.

[David1969]

The abnormalaties are in my abdomen, I do not have my path history. I am waiting for my blood work results, 2 months ago they came back as normal.

I have a follow on CT scan in 2 months, the oncologist says that a PET scan will not help in this case and he does not think they can biopsy the growths.

[Jay68442]

Not sure what to think at the moment as he has said if it is a reocurrence then I have a 50/50 chance of surviving. Has anybody else had a similar problem?

Hi David,
Sorry to hear you have to deal with this all over again. When I was diagnosed the cancer had spread to 1 or 2 nodes but a RPLIND was not performed at that time. Instead they decided to treat the nodes with chemo. Less then one year later they were back. The doctor told me the same thing about my chances. 50/50 Well that was at 18 years ago so just throw the bad 50% out the window and concentrate on the good 50%. Like the others have mentioned seek out the best doctors asap.

[Karen]

In remaining nodes? liver? It is very important that you get copies of your path from the I/O and RPLND as well as reports from you CT and blood work. If this is a recurrance you need to gather up all your reports and get an expert opinion. We can offer much help but need the details of what you were diagnosed with to do so.

[Fed]

The abnormalaties are in my abdomen, I do not have my path history. I am waiting for my blood work results, 2 months ago they came back as normal.

I have a follow on CT scan in 2 months, the oncologist says that a PET scan will not help in this case and he does not think they can biopsy the growths.

Thanks for the clarification. You should try to get all of your path reports so you can start making some sense of this. Your doc is right in saying that a PET is unlikely to help, because in cases of non-seminoma, they are not always conclusive (I speculate that this is because teratomas behave like regular cells, so they probably wouldn't light up, but don't quote me on this).

I also think that a 2-month wait is unadvisable when there seems to be evidence of a recurrence. I take it you had markers before, right?

[David1969]

I will try and get my path results tomorrow. I have had regular marker checks since chemo and they have always been very good. My oncologist is still leaning to it being teratoma left over form the chemo.

[dadmo]

david:
As soon as you have that information please post it. I agree with Karen about getting to a center of excellance being in Ct you can use either Sloan Kettrering in NY or Dana Farber in Boston.

[David1969]

Does anybody know, whether you need to get your current doctor to recommend you go to one of the speclaist facilities for insurance purposes?

[Already Bald]

The abnormalaties are in my abdomen,

Hi David, try not to freat out.
I agree with everyone here that you should go to an expert- not taking anything from your doc.. Go to Sloan.
When you wrote that "The abnormalaties are in my abdomen", I was relieved- because teratoma does not travel through the body alone. Therefore, if you wrote that it was in the lung- it would have had to of "piggybacked" on another cell- like EC.
So, that is good news- and your doc is probably right.
I wish you the best, please let us know as things develop.
Joe

[Scott]

Welcome, David. I haven't finished reading this whole thread yet, but I did want to answer Margaret's question.

The only thing I questioned at first was why the 2 rounds of bep and not 3?

After RPLND, two cycles of chemotherapy is a standard unless there was a lymph node greater than 5 cm, according to the NCCN guidelines.

[Already Bald]

Does anybody know, whether you need to get your current doctor to recommend you go to one of the speclaist facilities for insurance purposes?

Just call the specialist, tell them what is going on and they will tell you how to get it covered.

[Margaret]

Welcome, David. I haven't finished reading this whole thread yet, but I did want to answer Margaret's question.After RPLND, two cycles of chemotherapy is a standard unless there was a lymph node greater than 5 cm, according to the NCCN guidelines.

Thanks for clearing that up Scott.

I hope all turns out well.