Relapse at the 3 Month Mark (100% Embryonal Carcinoma, LVI+)

[ByeByeMrRighty]

As it turns out, I relapsed at the three-month mark in one upper aortocaval node (1.3 x 1.3cm) and one lower aortocaval node (1.9 x 1.6cm). I knew my chances were 50/50 and at the time I made the right decision.

In the lower thorax portion of the abdomen CT, the report spotted 4mm nodule in the right lower lobe and was noted as "suspicious for a metastasis.” Apparently, the abdomen CT can sometimes pick up the bottom of the lungs. My onco scheduled a CT of the chest and pelvis and I got that done today. Nothing was found.

Right now, I’m scheduled to start 3 cycles of 5-day BEP on March 5th (bleo shot on Mondays). I've banked my sperm and had a PFT. I have a couple questions:

1) I'd like to keep on top of the side effects of BEP. I’m ordering cold therapy mittens and something for the feet (ice bucket?) to reduce Raynaud's during treatment. When I "chill" my hands and feet should that be during just the bleomycin portion or the entire treatment? Since each session is 6ish hours long so I couldn't imagine it would be possible to keep them cold that long.

2) Do we have any statistics on the need for post-chemo RPLNDs? Given that it's pure EC, I know teratoma being left behind is a possibility.

3) A question on the metabolic effects of chemo. Are the long term high blood pressure, cholesterol, heart problems, cardiovascular problems, etc. caused by damage to the veins during chemo or due to long term circulating platinum?

Thanks in advance for the help.

[Jackmandy919]

Hi I’m so sorry to hear about a relapse and praying for the best for you, Just a quick question.. did you do chemotherapy before? Or you went on surveillance? I didn’t see any info in regards to your situation such as what happened prior to this?

[biwi]

EC can indeed produce AFP and/or bHCG. It doesn't always though.

post chemo RPLND rates are something like 30% or so. The larger the nodes pre-chemo, the higher the chances I think. Your nodes are relatively small still, so there is still a good chance you will not need a post chemo RPLND.

[scotty808]

Good luck I also start 3×BEP on March 5th I was diagnosed with seminoma in both testicles last June my last CT scan start of February showed 1 two cm node and 1 just over one cm node in my abdomen so good luck

[ByeByeMrRighty]

Jackmandy919: I didn't do adjuvant chemo
biwi: Less than 30% sounds about right. Do you know what the average size of a node is at relapse? Interested how I size up.
scotty808: Good luck, man. Have you looked into cold therapy for your fingers and toes? I highly recommend it. That's what I'll be doing

[lautreamont]

.. , but I'm glad it came back sooner than later. I knew my chances were 50/50 and I made the right decision at the time.

p.

First of all sorry about the relapse but as you say, you did the right thing, checked on time and will take care of this. We are all with you!
Quick question: You said you knew your chances were 50/50. Typically surveillance is recommended for stages I with relapse rates around 15%. Did you have increased risks?
And might be silly but when one relapse (on nodes) is it always the same type as the original testis tumor?

[dcalandrelli]

50% is attributed to EC with LVI. There are multiple factors that can do this and these two are some that raise that chance. To ByeByMrRighty you are where I was about a year ago. I didn’t have LVI but did have lymph increased with biggest 1.9 cm and 100% EC. I talked to Dr. Einhorn before treatment and he told me in my case (very similar to yours) 3xBEP has a cure rate close to 100% and the chances of needing RPLND are close to 0. I imagine the same would go for you as well.

[ByeByeMrRighty]

lautreamont: actually, surveillance is a valid option for any stage 1 disease, non-sem or sem. I happen to have the most risk factors, one being EC and two being LVI+. The highest relapse risk for stage 1 of any kind is 50%. Most people with stage one disease are well below that number, especially for seminoma patients. The tumor is typically the same upon relapse minus some exceptions. EC, for example, can transform into specialized cells such as teratoma, yolk sac, and more. I'm sure there are others I don't know about.

dcalandrelli: Your lymph node is exactly my size. What did yours drop to post-chemo? Did it vanish entirely? I'd really like to stay clear of needing an RPLND. Also, how did you handle chemo?

[ByeByeMrRighty]

Just to be sure, RPLND wouldn't be an option here? AFP rose slightly, still 2A with 2 nodules under 2cm...

[Trekga]

There is no way of knowing what will present post chemo on CT Scan. Most types of nonseminoma respond readily to chemo and shrink below 1cm. However, Teratoma is chemo resistent thus the protocol in the United States to proceed with post chemo RPLND if post chemo CT Scan still shows enlarged nodes. There is no way to confirm if the enlarged nodes are still active cancer or Teratoma until pathology.
Good luck

[dcalandrelli]

They were still there but they had all shrunk. I’m going for my third check up in two weeks getting pretty nervous about it. I thought the first cycle was the hardest and got easier as it went. That’s not typical I feel, but I handled it as best as I could have expected.

[SchoolOnHold]

Checking in to this thread as my situation was similar to yours, though like DC I never relapsed just started at 2A-B. I was told no RPLND if tumor markers are high, you say your AFP rose but I don't know if it's high. Generally though my Urologist recommended against RPLND for type 2 EC because the risk of micro mets is higher and the chance of chemo after is greater. My latest CT results just say "no pathologically enlarged lymph nodes in the abdomen or pelvis" so IDK if that means they cannot see them or they just aren't above 1cm but either way, I'm just a statistic but pure ec seems to get wrecked by BEP.

[Ann]

My son is going for his 2nd post Chemo scan next Tuesday 3/13 and we meet with the Dr. on 3/15 to see if the .7cm lymph node is still seen on scan. They did advise if it was still seen they recommend RPLND. Scared that they are going to see he needs it. He is just getting back to being healthy, chemo bloat gone, hair coming in, working out at the gym, dating a new girl.

June 15, 2017 Emergency Visit
July 19 I/O surgery
Stage 2A 95% EC 5% Yolk Sac
lymph node para-aortic region 2.1-2.0 cm AFP 133.7
Sept 21 Start 3X BEP
Nov 21 Finish BEP
Post Chemo Scan lymph node .7cm
Markers all normal