Embryonal Carcinoma Guys: recurrence?

[jonahsmom]

My son completed 3 rounds of BEP, and it was not easy to say the least. His tumor markers continued to go down after and his lymph node they were sure caused the spread to his lungs continued to shrink from 2cm at start of chemo to 1.4cm 3 months ago. His oncologist was just about to switch him to every 6 months twice and release him, when his CT showed that lymph node is at 1.8 cm again. His tumor markers are still ok, but she wants to check them next month. We opted not to do RPLND in the beginning, but of course, I always wonder if we made the right decision. His tumor markers didn’t start going up until it reached his lungs, so I’m not real sure I trust those being negative. She says if they are elevated next month he will need to have that lymph node removed and have chemo again.

Advice, please? Anyone have stage 3B 100% embryonal carcinoma that relapsed after chemo???

[biwi]

I would contact the experts and start being treated by them. It is important at this juncture to get this identified and treated properly. At 1.4cm post chemo with EC, RPLND should really have been mandatory and not optional.

I had 3a EC treated with 4xEP and relapsed in a single node with no markers 6 months later, and I then had an RPLND, where the one node ended up being Teratoma (a transformation from EC that is benign for a while before it can transform). I have been all clear after the RPLND for 2 years, with no further chemo.

At this juncture, assuming the node is in the retroperitoneum, it is prudent to get an RPLND asap. Chances are decent that what remains is teratoma, and if an RPLND finds that is true, no further chemo is necessary. If his RPLND shows viable metastatic cancer, then expert opinion really comes in to play. Depending on the exact scenario they may recommend surveillance or further chemo - but this is something that needs a very skilled TC oncologist to determine.

[Trekga]

I concur with BIWI. Dr. Lawrence Einhorn says that post chemo if lymph nodes are over 1cm = RPLND. Please email him immediately at [email protected]
Dr. Einhorn is one of the most distinguished TC Experts- he is the Oncologist who changed the course of TC from almost always fatal prior to late 1970s to a highly curable cancer.

https://cancer.iu.edu/news-publications/Einhorn.shtml

[biwi]

IU gets a lot of praise here, but there are other places that are very skilled in TC as well that may be closer to you.

Here is a list that has been compiled by another organization: http://thetcrc.org/experts.html

[jonahsmom]

Side effects? Guys, I'm terrified of them! He is so young, yet he is an adult! I can't make the decision for him, but I don't want to steer him in the wrong direction either! What have your side effects been with RPLND? I know I'm getting up in your business, but I have to know how to make the best decisions. As a mother, I'm worried to death and frankly, about to lose it! I don't care where we have to take him, I just want to spare his life with the best possible outcomes. Not losing the other testicle is a big priority as well. I cannot imagine how he feels as a teenager, and I already know certain girls have refused to go out with him because he only has one testicle and some of his "friends" make jokes about him being the "one nut wonder." I want to whip somebody! Sorry, Southern mama rant over. I am so thankful for your input and advice. I have a horrible feeling about "waiting" even though the tumor board consists of 9 experts, they have never dealt with his type of cancer.

[wielandk]

Jonahsmom-My 22 year old had Stage 3A and had his RPLND on Sept. 13 at IU. We live 8 hours from IN but wanted to work with Dr. Einhorn. My son had an excellent result from chemo, but we wanted to be clear and RPLND was the protocol recommended. They found no teratoma or live cancer which we know means he did not need the RPLND but the knowledge of this, we feel, is worth the procedure. The procedure is difficult. My son is still at home recovering after almost two weeks, but we have so much hope for the future that we can get through this. My son called chemo 'more complex' than RPLND. I think if you can get through chemo, you can get through RPLND. Just my thoughts...best to you!

Kat, Mom of Jacks
June 2018 I/O right testicle, Pre-surgery HCG = 257, AFP = 15
June 2018 Path = 95% EC, 5% Tert & FYS, Four nodes in lungs ranging 6 - 10 mm, 5 x 2.5 cm node/s in abdomen, two areas of liver density, Stage IIIA or C
July 2018 - Midway scans lungs clear, abdominal 2.5 cm x 2, Stage III-A, treating facility says BEP x 4 (IU says 'no metastases in liver' BEP x 3)
Aug 2018 - Completed BEP x 3, Post-chemo HCG = <3, AFP = <1.5
Sept 2018 RPLND @ IU
Sept 17 2018 –Einhorn says ‘no teratoma or live cancer found’ (14 lymph nodes removed)

[Davepet]

I just want to spare his life with the best possible outcomes. Not losing the other testicle is a big priority as well. I cannot imagine how he feels as a teenager, and I already know certain girls have refused to go out with him because he only has one testicle and some of his "friends" make jokes about him being the "one nut wonder."

Well, first off, no decision you make now will have any effect on whether he gets TC in #2. It is rare, but it happens to some of us. Nothing you do now will affect that. TC2 is always a second primary cancer, it just doesn't spread from one to the other.

Second, any girl that doesn't want to go out with him isn't worth dating in the first place. Any "friends" that make jokes obviously aren't friends ( unless it's good natured joking & doesn't bother him).
I agree with others, RPLND should not have been optional with a node that size in the first place, the surgery is needed, the side effects will be endured. I would fire the oncologist that allowed you to not have the surgery, they don't know what they are doing.

Dave

[jonahsmom]

Davepet, thank you for the reassurance about the other testicle. I totally agree about the girl and the friends, but he is a teenager and his "friends" are his world. I have talked to him about it, but he is technically an adult (whoever decided a kid was an adult at 18?) and will hang with who he wants.

I emailed Dr. Einhorn and he called me last night. I was over the moon and so thankful! He of course agrees with you guys about RPLND. Because my son trusts the doctor he currently has, I decided to ask her to talk with Dr. Einhorn. I believe she is in a position to help Jonah understand and trust that this is the best decision for him. He trusts her whole-heartedly. Plus, I would like her to administer his chemo after, if it is necessary. He already knows and loves the staff there and it is close to home.

Question about the surgery. I'm all for letting Dr. Einhorn do it, but what about MD Anderson? Opinions? I have read conflicting reports about them and RPLND.

[Chemin]

Hello,
Sorry you are going through this. My son had a RPLND after BEP x3 because one lymph node was still enlarged. His side effects: He felt better quickly and was back in college after 3 weeks. He did not have any issues with eating other then he had to have small meals for the first 2 weeks. He did too much too soon and 6 months later had to have a ventral hernia repair at his RPLND site above the belly button. He had no lasting side effects after that. It's never hard to make decisions about such an intrusive surgery. Good luck.