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Embryoncal carcinoma. Relapsed after surgery. Did 3x BEP. CT Scan clear after chemo and first surveillance, but blood test revealed Beta hormones elevated at 400 from just a few days ago. Doctor said he doesn't know where it could be because CT scan was clear. Has this happened to anyone? What will happen next? I'm feeling mentally drained right now, so sorry for shortening this. I feel like I might die, but I'm only 23. Would surgery alone kill this thing if it's microscopic and not presenting on CT scans? I don't want to do anymore chemo and I can't emphasize that enough. Doctor called it a battle now and I'm be in contact with a specialist. I really feel doomed. Also, doctor mentioned it could be a "sanctuary" relapse, where the chemo doesn't go to certain areas (like the brain) and the cancer can regrow
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Last edited by dianbell; 10-12-19, 06:27 PM. -
Dianbell，
I am sorry to hear that you have the second relapse.
Can you explain a little bit more about yourself? How long after your BEP Chemo your bhcg elevates again?
But I know there is the second line chemo available, it can also cure you. Many of the people in this form we're treated by it.
EC is one of the most aggressive TC. WHEN the doctor can not see any mass from images, mostly you caught early. My son had his bhcg slightly elevated in his fourth months surveillance check-up, also CTs showed no change compare with earlier. But he started BEP CHEMO after one and half months and the doctor found out his one abdominal lymph nodes grown up from 0.7 to 1.8cm after chemo.
Now he is in ten months after chemo and seven months after RPLND. He is doing good.
I know your feeling, no one from this forum felt easy with this fight, we must stay strong, because we have no other way!
You should now go to a TC expert, EC is aggressive but normally good react to chemo. Don't loss your faith. You will beat it!
I hope some knowledge people can give more advice later!
Best wishes to you
Amy, Ran’s MomSon Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 2019@IU Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal
08/23/2019 Bloodwork, Abdomen CT and Chest X-ray all normal -
My last day of chemo was June 25th. Initial scans were clear, as were blood tests. It has just recently started to elevate. I was initially diagnosed with stage 2 Embryonal Carcinona. Did your son do only RPLND after post-chemo relapse?Comment
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Dianbell,
My son was not relapse. His lymph nodes were continued to grown up. So he need RPLND when the chemo was ended and the tumor markers were normalized. The RPLND pathology showed only teratoma. The he need no more treatment.
I think your situation is not the same. Your tumor markers is elevated, that means perhaps you have live tumor cells in your body, you need chemo first, after chemo maybe need another CT scan.
I am not a TC doctor, above is just my opinion. The most important thing I would like to suggest you going to a TC expert, you really need a good doctor to discuss and give you a good treatment plan.
I hope you can be treated asap.
BRs
Amy, Ran’s MomSon Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 2019@IU Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal
08/23/2019 Bloodwork, Abdomen CT and Chest X-ray all normalComment
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Have you had consecutive elevated tests? Or was it a single test that was elevated? Folks have had lab errors before, it isn't common but it isn't unheard of. If this was just a single test I would definitely be requesting a second blood draw and re-test of the tumor markers to confirm.
With no evidence of disease in any scans, surgery is not an option (where would you operate?).
An ultrasound of your remaining testicle is prudent if your markers remain elevated with no evidence in any scans.
Personally, for a relapse after chemo I would be seen by your nearest expert level TC center. TC recurrence after first line treatment is relatively rare, and with TC being fairly rare itself, most oncologists just don't have deep direct experience in treating these more critical cases.
Where are you located? There is an experts list here that you can consult: http://thetcrc.org/experts.html6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
7/7/15: bHCG 56, AFP 42, LDH 322
7/13/15: begin 4xEP, end 9/18/15
10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
4/20/16: RPLND @ IU - teratoma only!
10/22/19: all clears up to this date!
4/8/24: stopped monitoring something like 2 years ago, still all clear!Comment
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Sorry to hear this, dianbell. I think we had here similar situation with some guy recently, he also had elevated bHCG after BEP with clear scans, finally cancer occured in his bones after some time. Luckilly, there are well established second line chemo options for your situation with excellent prognosis, but let's wait for opinion from some expert.45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
Waiting...Comment
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I got another blood test today to make sure. I'll update this post on what happens. I'm also getting an ultrasound, a PET scan, and an MRI. I think the doctors suspect a sanctuary site in my brain. I find solace in believing whatever it is, it can't be large or extremely spread. Like I said, CT scans are clear.Comment
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Sounds like you are getting things checked out. Brain metastasis although possible, is pretty rare, so hopefully it isn't there. Keep us updated, we'll be thinking about you.6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
7/7/15: bHCG 56, AFP 42, LDH 322
7/13/15: begin 4xEP, end 9/18/15
10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
4/20/16: RPLND @ IU - teratoma only!
10/22/19: all clears up to this date!
4/8/24: stopped monitoring something like 2 years ago, still all clear!Comment
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Depending on the new test results, consider an email to Doctor Einhorn to get his opinion. You are not out of options yet.
DaveJan, 1975: Right I/O, followed by RPLND
Dec, 2009: Left I/O, followed by 3xBEPComment
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Just got a call. Second blood test was normal. One of these tests is an error, and it's probably the elevated one. I want a third test just to be sure, but this is terrific news!Comment
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Awesome, that is good news!6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
7/7/15: bHCG 56, AFP 42, LDH 322
7/13/15: begin 4xEP, end 9/18/15
10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
4/20/16: RPLND @ IU - teratoma only!
10/22/19: all clears up to this date!
4/8/24: stopped monitoring something like 2 years ago, still all clear!Comment
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I would also want a third test to be safe, but breathe a big sigh of relief. This is very good news.Jan, 1975: Right I/O, followed by RPLND
Dec, 2009: Left I/O, followed by 3xBEPComment
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