RPLND after chemo??

[nlferraro19]

My fiance was diagnosed with testicular cancer in June 2006. He had a left I/O, and pathology report indicated 100% Embryonal Carcinoma. Through all of this, his tumor markers were ALWAYS normal. The first CT scan revealed enlarged lymph nodes, with the largest measuring 2.6cm. After a few opinions and extensive research, the decision was made to have 3 cycles of BEP. After his second cycle, a CT was done that showed improvement, indicating all enlarged lymph nodes had disappeared except one (the one that was 2.6cm), and it was now 1.5cm. So the doctor said we will see what happens after cycle 3. After cycle 3 the CT scan showed no change at all, lymph node remained 1.5cm. We haven't met with the doc yet to discuss what is next, but from the research we have done on the internet, it looks as though he is going to have to have the RPLND to remove the residual mass, whatever it is. This is what we wfeared would happen. Has anyone been in a situation close to this and what is the common protocol? Thanks for any help and advice.

[dadmo]

If your treatment has been overseen by Sloan Kettering and the lymph node is still enlarged they will want it removed. If it were my choice I would want that node out just to verify that I'm clean. If when they remove the node they find any live cancer cells you may be in for a bit more chemo, perhaps at that point surveillance is an option.

[nlferraro19]

He is being treated in Florida, a highly recommended Oncologist in the area, whom is also in contact with Dr. Einhorn at Indiana University. We will be meeting with the Onc. on Friday, the 17th, and hopefully our doc will have already touched base with Einhorn for any advice. If he recommends the RPLND, which it is looking this way, then we will probably be looking at having it done at IU. Is it common to have a residual mass after chemo, when the primary tumor is embyonal carcinoma??

[dadmo]

It's not unusual. With no teratoma in the path report it's most likely dead cancer cells. It will be interesting to see what IU recommends. With no teratoma they may want to just watch for a bit and see if the dead tissue is reabsorbed. Of course if there is live cancer you may miss the opportunity to remove it before it spreads. The decision for surveillance is always a tough one.

[nlferraro19]

I have read on a few stories that a PET scan was done, to "minimally" play a part in identifying if there is live cancer. Does this sound like an option? We are more worried now because he has gone through chemo and I have seen that the RPLND after chemo is much more risky. This is one of the hardest decisions we will ever make.

Thanks for all your advice . . I'll keep you posted on the follow up.

[dadmo]

If you should have the RPLND done at IU it won't matter that it's post chemo, these guys are masters at this particular operation.

[nlferraro19]

That is wonderful to hear! Thanks soo much for the encouragement.

[indiana9]

nlferraro19,

Yes, it is very common to have a post chemo mass and it will usually vary in size relative to how large it was to begin with. I had my post-chemo RPLND done at IU by Dr. Foster, a genius. My PET scan showed active residual cancer left in the tumor and thus the need for my surgery. Following the surgery, Dr. Foster told me: "I have good news and I have bad news." When I asked for the good news first, he told me my PET scan was a false positive and that only necrotic tissue was left following chemotherapy. When I asked him what the bad news was, he said, "You would have been OK without the surgery." I am glad I had the surgery regardless, and am only sorry I bothered with the PET scan which was only covered 50% by my insurance.

You guys are going to be great. There are a lot of links here about RPLND experiences, but most everyone will tell you that if they had to choose between the RPLND and chemo, they would choose the RPLND.

Good luck,
Brian

[nlferraro19]

Thanks you for the info Brian. I feel very confident that everything will be just fine. I am still trying to convince my fiance, Nick, of that. He has fallen in the lower percentile for every aspect, and that seems to have discouraged him. He is a very strong man, and I know he/we will get through this. Thanks again for your input.

[nlferraro19]

Well tomorrow we will talk to the oncologist about the CT results and hear his opinion on the RPLND. Like I said before, I hope he has already talked to Einhorn, knowing he is a SPECIALIST in this area. Thanks again to all of you, and you are all in our thoughts!!

Nick & Lisa
(nlferraro19)

[nlferraro19]

Just an update . . spoke with the oncologist. He suggests serveillance for the remaining lymph node. He will also be getting in touch with Einhorn, and we will talk to the original urologist, to get his opinion too. He actually does the RPLND too, even though we would go to Indiana to have it done. Thanks and Happy Thanksgiving to all!

Lisa & Nick

[dadmo]

Lisa & Nick:
Let's hope Einhorn recommends surveillance, if not your wise to go to Indiana for the RPLND.

[nlferraro19]

Went to see the urologist last week. He recommends the surgery, but we are going to watch the residual mass for 2 months and see if it starts to go down on it's own. He also said there has been 90% improvement of total volume from the beginning, to after chemo completion. That was even more than we thought. :-)

Lisa & Nick

[dadmo]

Lisa & Nick:
If you wait two months you will be in surveillance. If the node hasn't gotten any larger and all the markers are normal why don't you just stay in surveillance?

[nlferraro19]

I agree with that! ;-)