Reply With Quotehow are his tumor markers?
Registered User
just got the call with the results of the CT scan, absolutely nothing has changed. None of the nodes have shrunk after 3 rounds of BEP. I want to die and dont' know what to do - please help with any advice - we meet with the oncologist tomorrow at 11:00
Stage IIB
12/29/11 - Diagnosed AFP-181,HCG-30,LDH - 181
12/30/11 - R I/O 40% EC,40% yolk sac, 10% chorio,immature teratoma with islands of immature & atypical cartilage
12/30/11 CT - 6 nodes largest is 2.8 x 2.2 cm
1/13/12 - AFP-24, HCG -7, LDH-389
1/24/12 - BEP x3 round 1 began
3/27/12 - BEPx 3 completed,6 nodes remain largest 2.9 x 2.2
4/26/12 - RPLND at University of Colorado,1dead, 5 teratomas
5/3/12 - All clear - surveillance
7/19/12, 10/1912 - all clear!
Registered User
how are his tumor markers?
Justin; http://www.facebook.com/justinkatuls
Stage IIIB with mets to lungs; 100%EC; BEPx4
http://youtu.be/hlsIwmtb0U8 Divine Romance, Phil Wickham
Registered User
totally normal
Stage IIB
12/29/11 - Diagnosed AFP-181,HCG-30,LDH - 181
12/30/11 - R I/O 40% EC,40% yolk sac, 10% chorio,immature teratoma with islands of immature & atypical cartilage
12/30/11 CT - 6 nodes largest is 2.8 x 2.2 cm
1/13/12 - AFP-24, HCG -7, LDH-389
1/24/12 - BEP x3 round 1 began
3/27/12 - BEPx 3 completed,6 nodes remain largest 2.9 x 2.2
4/26/12 - RPLND at University of Colorado,1dead, 5 teratomas
5/3/12 - All clear - surveillance
7/19/12, 10/1912 - all clear!
Registered User
It could be necrotic tissue in the lymph nodes after BEP. RPLND might be the next step.
JPM
JPM
March 2011: Right I/O, Stage IA classic seminoma, 5.0 x 4.5 x 3.5 cm
May 2011: Single-Agent Carboplatin
Currently ALL CLEAR
Registered User
originally they wouldnt do the rplnd because of the location of the lymphnodes, we were told they needed to be shrunk because one was too close to the vena cava, not sure what to do if they wont do it
Stage IIB
12/29/11 - Diagnosed AFP-181,HCG-30,LDH - 181
12/30/11 - R I/O 40% EC,40% yolk sac, 10% chorio,immature teratoma with islands of immature & atypical cartilage
12/30/11 CT - 6 nodes largest is 2.8 x 2.2 cm
1/13/12 - AFP-24, HCG -7, LDH-389
1/24/12 - BEP x3 round 1 began
3/27/12 - BEPx 3 completed,6 nodes remain largest 2.9 x 2.2
4/26/12 - RPLND at University of Colorado,1dead, 5 teratomas
5/3/12 - All clear - surveillance
7/19/12, 10/1912 - all clear!
Registered User
So it could be safe to assume that they could be scar tissue or teratoma. Surveillance versus RPLND at this point I believe.
Justin; http://www.facebook.com/justinkatuls
Stage IIIB with mets to lungs; 100%EC; BEPx4
http://youtu.be/hlsIwmtb0U8 Divine Romance, Phil Wickham
Moderator
While an occasional performer of the surgery might be less than confident in their ability to remove something near the inferior vena cava, you might want to consider going to a center of excellence. Nichols is closest to you (he is a med onc, I think) in the NW, but either MSKCC or IU are great options and if those nodes need to come out (there is a mention of 6 nodes in your signature - are there still 6 of ~2 cm each?), they are the places to go.Originally Posted by JoeysMom
Justin is right - with normal markers and unchanging nodes, there is a high chance what is there is teratoma, or perhaps necrotic tissue. If it is teratoma, surveillance to wait and see if things get larger might be mentioned, but the surgery is a much more likely (and better for Joey in the long run) option.
Tracy
Cancer pharmacologist, caregiver blog here
Wife to Kel, dx 12/30/11 Stage IIIc (poor) embyronal, AFP 13700, 10x11 cm retroperitoneal mass, 1 cm^2 lung met
Left I/O 12/31/10.
4xBEP 1-4/11, AFP=22, 5*7 RP mass, tx failed
1.5 x VeIP 5-6/11; tx failed, AFP/b-hCG rising
Salvage RPLND @Indy 6/29/11, metastatic mixed germ cell tumor with yolk sac, seminoma and teratoma
Remission! AFP steady since 9/2011; 1.5 years ALL CLEAR
Registered User
I can only imagine you are feeling lost right now. Try not to, I am sure there are options that your onco will go over. Plus there is always Dr. E.
Hang in there, thoughts and prayers!!
Doug
"There's no dollar sign, on a piece of mind, this I've come to know" Zac Brown Band
Registered User
I had some nodes next to that vein too. Made me nervous as all heck. I thought what if they hit that in rplnd. I will bleed out!
My sergon didn't seem to be worried. He said If it gets cut he can repair it. But he said he's sure he won't touch it.
I would talk to an expert. Don't loose hope. Not the end of the road!
I had teratoma initially. Had rplnd. Everything suspicious came up clear.
Registered User
I concur; this is very likely to be teratoma due to the lack of tumor shrinkage. RPLND is most likely the next step, and a high volume center should be used.
"Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
11.22.06 -Dx the day before Thanksgiving
12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! Final follow-up: 07/2014.
Please support my fundraising efforts for the 2013 Austin LIVESTRONG Half Marathon!
Registered User
Hi there,
Just wanted to respond because your situation is pretty much what we went through almost 2 years ago now (!).
After 4 cycles of chemo, Shaun's tumour was still almost 10cm and was literally stuck to his aorta, kidney and psoas muscle. While it didn't grow during chemo, it didn't shrink. Because of its size and shape, they assumed it was teratoma going in, and they were right. It was removed via bilateral, open RPLND by an expert surgeon, and after his recovery he's been fine ever since. Feel free to read all about it - our blog is still in my sig.
If your doctors are concerned about operating when the tumour is near the vena cava, this (to me) is a sign that they do not have enough RPLND experience. You should have a centre of excellence conduct the surgery in order to ensure the best outcome for Joey. If insurance is your concern, I believe RPLND is usually covered because there is proof that outcomes are better when an expert conducts the surgery. I'm sure those who have gone through a similar insurance experience will chime in.
Please don't worry - your son is still on the road to full recovery. It'll just take a little longer than originally anticipated.
Let me know if you'd like any specific info or would like to talk further about our experience.
Good luck tomorrow,
J
UPDATE: just read your signature and particularly given the immature teratoma and atypical cartilage they found in his primary tumour, this is even more reason to get him to an expert surgeon. You should also be aware that IU aims to do the RPLND within 4 to 6 weeks after the last course of chemo, while Memorial Sloan Kettering does so within 8 weeks. The point is, that surgery needs to take place ASAP to ensure the best outcome.
Last edited by julesTO; 03-28-12 at 06:56 PM.
Husband Shaun diagnosed March 2010. AFP 4571, HCG 3340.
6cm x 6cm x 8cm retroperitoneal mass + 1cm nodule in right lung.
Stage IIIb, Intermediate Risk.
Left I/O March 9/10: 75% EC, 20% Teratoma, 5% Yolk Sac + Seminoma.
3xBEP + 1xEP March 15 - May 21/10: markers normal.
Bilateral RPLND July 28/10: 9.5 x 7 x 4.5cm mass, teratoma only.
Chylous Ascites Aug/Sep.
November 2012 All Clear
Continuously monitoring 0.9 x 1.7cm omental nodule (possible fat necrosis)
www.teamshaun.wordpress.com
Registered User
thank you all so much, dr. einhorn just emailed me back and made me feel a thousand times better, he suggested dr. richard foster should do the rplnd and has already been in touch with our oncologist. our oncologist called him also. everyone seems to believe this is teratoma, tracy - originally there were 6 nodes, there are 3 remaining nodes that apparently have not shrunk, we are getting the official report tomorrow. i am happy that our oncologist immediately called dr. einhorn for advice, so now we are getting prepared to battle with our insurance company to figure out how to pay out of network. i will sell my house if i have to - i am just so happy that there is a "chance" out there that he will be okay, these boards are a life saver, i never would have know about dr. einhorn, indiana university, teratoma, etc. is there a board that gives advice on rplnd at indiana university and tips, etc.? we will probably be driving out there in a motorhome.again, thank you all so much! god bless all of you.
Stage IIB
12/29/11 - Diagnosed AFP-181,HCG-30,LDH - 181
12/30/11 - R I/O 40% EC,40% yolk sac, 10% chorio,immature teratoma with islands of immature & atypical cartilage
12/30/11 CT - 6 nodes largest is 2.8 x 2.2 cm
1/13/12 - AFP-24, HCG -7, LDH-389
1/24/12 - BEP x3 round 1 began
3/27/12 - BEPx 3 completed,6 nodes remain largest 2.9 x 2.2
4/26/12 - RPLND at University of Colorado,1dead, 5 teratomas
5/3/12 - All clear - surveillance
7/19/12, 10/1912 - all clear!
Registered User
Post BEP I had slight growth in the masses, one of which was described to me as wrapped around my vena cava. A year ago today I had my RPLND and as of my last check up I am all clear. You are in good hands with an experienced surgeon! It was hard to think of the positive side after I felt that Chemo "failed" but I like to think that it stopped things from spreading further than they did...All the best!
Last edited by Stewy; 03-28-12 at 07:19 PM.
Stewy
12 Dec 2010 - Diagnosed with Stage III TC
16cm x 10cm Retroperitoneal mass + 3cm x 1.5cm nodule in right lung
17 Dec 2011 - Left I/O - Non - Seminoma - Teratoma
Dec 28 to Mar 01 2011 - 3XBEP
28 Mar RPLND- 17cm x 11cm x 8 cm Mass Removed
28 Apr Thoracotomy - Lung Wedge Resection 2.8cm x 2.1 cm Mass Removed
April 2012 - All Clear
Registered User
I haven't had a RPLND (knock on wood) but Dr. Foster is my doctor and he is awesome!! Our first visit, post I/O, he sat down with me and my wife and explained all of the percentages and choices and took all the time we needed, until we felt comfortable. He recommended surveillance for my case, but he said no matter what I chose, he would support it and do his best. Everyone at his office has been friendly and helpful. You son is in great hands.
Doug
"There's no dollar sign, on a piece of mind, this I've come to know" Zac Brown Band
Registered User
Thank you Jules, Stewy, DC, etc., you have all made us, here at home reading this forum, feel much better. We were beside ourselves earlier and I apologize for the rambling posts, I was really upset. I am breathing again and now trying to plan our trip and hope we can get into see Dr. Foster asap.
Stage IIB
12/29/11 - Diagnosed AFP-181,HCG-30,LDH - 181
12/30/11 - R I/O 40% EC,40% yolk sac, 10% chorio,immature teratoma with islands of immature & atypical cartilage
12/30/11 CT - 6 nodes largest is 2.8 x 2.2 cm
1/13/12 - AFP-24, HCG -7, LDH-389
1/24/12 - BEP x3 round 1 began
3/27/12 - BEPx 3 completed,6 nodes remain largest 2.9 x 2.2
4/26/12 - RPLND at University of Colorado,1dead, 5 teratomas
5/3/12 - All clear - surveillance
7/19/12, 10/1912 - all clear!
Registered User
My son will be at IU on April 11 for surgery with Dr. Foster, and Mike Brady on this board is scheduled for surgery with Dr. Foster on the 12th. It would be terrific if you are also there at the same time. When Dane had his RPLND at IU 2 years ago, he went one day before surgery for all the scans and blood tests. He checked into the hospital very early the next morning for surgery. He was in the hospital about 5 days and flew home on the 6th day. I'll send you a private message later with tips and other info I can think of. The entire staff at IU is amazing. Lynn
Dane after Dr. Einhorn told him his tumor was gone. (4/10/12)
2/9/10 - left oriectomy. Tumor 3.8 cm; focal lymphovascular invasion.
EC - 35%; Teratoma with immature neuroectodermal elements - 35%; Seminoma - 20%; Yolk sac - 10%;
3/16/10 - Left RPLND at IU. All clear. Surveillance for 18 mos.
12/16/11 - LDH 476; AFP 1.1; HCG 6. CT scan: tumors in lymph node and on renal artery
2/27/12 - BEP x 3
4/11/12 - Surgery cancelled at IU. Cancer (seminoma) is gone.
Registered User
"Mike Brandy"? :-P Do you mean me?
As for options, I think Dr Foster/Einhorn are a fantastic resource and you are in good hands now that you have contacted them and they are aware of your case.
11/21 Diagnosis
- EC 45%, Yolk Sac 40%, Teratoma 14%, Sematoma 1% w/ LVI
- CT no remote mets, RPLNs largest 4.2cm, few <1cm, Liver/Kidneys/Lungs/Brain CLEAR!
11/25 - Left I/O AFP:2715,HCG:503,LDH:289
12/8 - Post I/O AFP:855,HCG:304,LDH:NORMAL!
2/20 - 3xBEP DONE! AFP:5.8 HCG:<1
4/15 - RPLND Residual Necrosis/Teratoma removed
http://takingcancerdownoneballatatime.blogspot.com/
Registered User
I have had Rplnd at IU w Dr Foster. He dissected my vena cava as part of the surgery. You are in good hands, if not the best hands and facilities in the world.
Jan '11 - Stage IIIc, Mets in lungs and liver, abdo 7*7, pulmonary embolism
Right I/O AFP 13,000, bHCG 110, Scrotal Hematoma
Vena Cava Filter placed
4*BEP, self-injected Lovenox
AFP 20 end of 4*BEP
May '11 - RPLND @ Indiana U - inferior vena cava dissected, necrosis, AFP<5
Filter Removed
Surveillance (blood & X rays) and all clear for 24 months
April '13 - AFP 26
Moderator
So glad you got in touch with Dr. E and will go see Dr. Foster. Kel had his RPLND done there, and didn't have any of the last complications with retrograde-ness, ascites, etc. And he still had a large mass of viable tumor (although it had receded from his IVC). You are in some of the BEST hands in the world!
Going to a center of excellence should be covered - it is by most insurances, since your "in-network" providers are not experienced enough. IU handled the insurance for us, I am sure they will try for you too!
T
Tracy
Cancer pharmacologist, caregiver blog here
Wife to Kel, dx 12/30/11 Stage IIIc (poor) embyronal, AFP 13700, 10x11 cm retroperitoneal mass, 1 cm^2 lung met
Left I/O 12/31/10.
4xBEP 1-4/11, AFP=22, 5*7 RP mass, tx failed
1.5 x VeIP 5-6/11; tx failed, AFP/b-hCG rising
Salvage RPLND @Indy 6/29/11, metastatic mixed germ cell tumor with yolk sac, seminoma and teratoma
Remission! AFP steady since 9/2011; 1.5 years ALL CLEAR
Registered User
great call contacting Dr. E. I know my situation looked absolutely horrible and he really cleared things up. The RPLND is rough, but nothing he can't handle i'm sure, plus he'll have an awesome scar he can show off. best of luck to you and your son!
Kick testicular cancer in the balls
9/2010 Pure Embryonal Carcinoma
10/2010 right orchiectomy
6/2011 HCG up to 300
7/2011 HCG up to 1500
8/2011 HCG down to 6
8/25/2011 mass in abdomen
9/23/2011 RPLND
11/2011 HCG up to 37 masses in lungs and lymphnodes 11/2011 1X TIP
12/2011 HCG up to 400
12/2011-1/2012 2x HDC carbo/etopiside with Dr. Einhorn 3/2012-5/29/2012 50mg oral etopiside
1/2012-present HCG >0.5
Registered User
Sorry Mike for the typo. Yes, I did mean you. I was typing on an IPAD as my brain was shutting down for the night. Lynn
2/9/10 - left oriectomy. Tumor 3.8 cm; focal lymphovascular invasion.
EC - 35%; Teratoma with immature neuroectodermal elements - 35%; Seminoma - 20%; Yolk sac - 10%;
3/16/10 - Left RPLND at IU. All clear. Surveillance for 18 mos.
12/16/11 - LDH 476; AFP 1.1; HCG 6. CT scan: tumors in lymph node and on renal artery
2/27/12 - BEP x 3
4/11/12 - Surgery cancelled at IU. Cancer (seminoma) is gone.
Administrator
On my phone an out of the country on vacation, but concur with the others that you should get this done at a center of excellence. If markers are normal that doesn't necessarily mean that "chemo failed". Yes, either dead tissue or teratoma are very likely.
My vena cava was torn during the RPLND by Dr. Sheinfeld and I lost 5 units of blood on the OR table. That's why you want to go to a COE, because they'll have a top notch vascular surgeon on standby just for "oh ****" moments like these. They would at a regional hospital too, but how good are they? Per my insurance records, the vascular surgeon at MSKCC was paid more to fix my vena cava than Dr. S was to do the RPLND. He still managed to remove 51 lymph nodes and described my op as being at the extreme end of the difficulty scale. Yes, a lot of surgeons can "do" the RPLND surgery, but I do believe there's a difference between one that's done a hundred in their career vs 100 *per year* like Dr. Sheinfeld and Foster do.
So I would definitely recommend going to a COE. Best of luck!
Steve - http://www.caringbridge.org/visit/stevep
February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
Dec 2012 - 1.5 YEARS ALL CLEAR!
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