Thank you Dave
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I think it would be important to tell everyone where you are located so that if RPLND surgery is needed you can know the excellent surgeons for the job in your area. Unless I missed a post that says it?
I was just 2a. 1 enlarged node to 1.9cm. I went with the RPLND surgery since I had an expert near by that could do the surgery. They found 5 total nodes rather than the 1 that showed up on the PET/CT. The surgery can be curative on its own but given the correct circumstances like mine, it lessened the amount of chemo I have to do from 4EP or 3BEP to 2EP.
They will only allow the surgery if your tumor markers stay normal. As much as I donât want to have to do chemo (again) Iâm glad itâs not going to be 3 or 4 rounds and I can spare myself at least 1 round maybe 2.
Just something to consider. Hoping the best for you.Comment
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I live in El Paso Texas and I emailed Dr. Einhorn and replied saying that chemo would be best and his cure rate is still 99-100%. He did mention RPLND surgery as an option but not sure if my Husband’s urologist does those kind of surgeries. My husband’s tumor markers are normal and been that way since the beginning.Originally posted by surfhb View PostComment
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Hi, I read all of the above. Then I have a question, is it normal that doctors will restage patients because of enlarged nodes during surveillance? I thought patients get stages only when they got diagnosed. Everything comes later called recurrence or relapse, isn't it?
Sorry for my stupid question. I am trying to learn more about TC.
Many thanks for your input!
Best Regards
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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Hi...From Canadian semimoma protocol, surveillance seems to be the preferred method.....in my case there was surveillance after 2007 orchitectomy and in about a 1.5 years time (2009) the seminoma popped back as a 1 cm node in the para-aortic region (discovered by CT scan). I then had 20 days of radiation (took about 2 years to feel good after the bombing) . I was released from the program after 9 years of continued surveillance (blood work and x-rays). Wishing you and your husband health and happiness.
Aug 07 - Stage 1 - Pure seminoma - Right orchidectomy + surveillance
May 09 - Stage 2a - 1 cm node in para-aortic region
June 09 - 20 X RT (25Gy to full lymphs, extra 10 Gy to node)
Sept 09 - All Clear
Mar 10 - All Clear
Jul 10 - All Clear
Nov 10 - All Clear
Aug 11 - All Clear
Feb 12 - All Clear
Dec 12 - All Clear
Dec 13 - All Clear
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Glad you got a response from Dr. E. He is absolutely the man when it comes to this. I emailed him also and did exactly as he suggested. Chemo isn’t as bad as you read about. There are many posts on the site that can help you deal with the side effects.Originally posted by Violet0729 View PostComment
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Amy,
Technically, this is a relapse, but no matter what it's called it's the treatment going forward that is what is important, & that does not change.Jan, 1975: Right I/O, followed by RPLND
Dec, 2009: Left I/O, followed by 3xBEPComment
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Violet,
Glad you heard from doc E, I would follow his advise, he knows how to treat TC better than anyone.Jan, 1975: Right I/O, followed by RPLND
Dec, 2009: Left I/O, followed by 3xBEPComment
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Thank you very much, Dave.
I saw this word ”restage ” very often, but I couldn't read anything from papers. That confused me always.and sometimes it related to the outcome. So I want to know more about it.
Thank you again!
BRs
AmySon 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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Violet! Ugh, I am SO disappointed to hear about the relapse! I was just thinking about you the other day since both our husbands were diagnosed close to this time last year. So sorry for the relapse, but you guys are doing everything right! Hang in there. He will be okay. Keep us postedLast edited by melanie; 03-17-19, 06:11 PM.2/7/18- Husband diagnosed
2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
3/12/18-4/1/18 Adjuvant BEPx1
4/12/19- ONE YEAR ALL CLEARComment
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Thanks Melanie and I will keep you posted. Today he had the pulmonary function test done. So Friday the oncologist will decide which chemo he will get. We are nervous and a little scared but I know we will pull through.Comment
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Ok so we went to oncologist and he got mad because my husband was supposed to get the biopsy on his lymph node and we didnât schedule anything because we thought it was optional since thatâs what oncologist made it seem. We still have to see if thatâs possible because lymph node is on a main artery. But this week we will find out. Then pulmonary function test came back ok but with a mild obstrutive disease in one lung. He can get BEPx3 but if he runs into problems then i guess EPx4. We are nervous and full of anxiety now. Every time he gets a lab done something new pops up.Comment
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Hi guys I have a question..... where there is spread to a lymph node is that area supposed to feel tender? My husband is still waiting for biopsy appointment and now he says that area where para aortic node is feels like a bruise.Comment
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Probably not related. Those lymph nodes are not near the surface of your skin, they are pretty deep inside 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!
4/15/19: all clears up to this date!Comment
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Oh ok thank you biwiComment
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