Chemo vs Surveillance & Relapse %s

[cgd]

Thanks, Dadmo, Brian and Jim for your insight about my son. I appreciate your getting back to me. When we got the first tumor markers back post surgery, the HCG dropped to normal, but AFP remains at 30 (down from 92). The oncologist believes it will return to normal (>= .0.7) by the next draw (about 1.5 weeks from now). 2 options are on the table: 2BEP or surveillance protocol. As I mentioned, we're getting a second opinion from Dr. Einhorn (IU) on Tuesday, so we'll wait to make decisions until then. The KC oncologist said relapse was 15-20% but what I read in the literature says 30%. Curious about people's opinions about chemo vs. surveillance and variance on relapse %s. Thanks!
Carol
__________
Son Diagnosed 12/23/05, Left I/O 12/27/05
Mixed non-seminoma,pT1NXMX
CT Normal; Markers 1/3/06 HCG 0.6, AFP 30

[Scott]

AFP's half-life is five to seven days, so it is to be expected that it would take a few weeks to get all the way back down to normal from 92. Although I'm in that 30% of stage I non-seminoma patients that experience a recurrence, I'm still convinced that surveillance was the right choice for me. It's absolutely essential to stick to the schedule.

As for adjuvant chemotherapy, read the section of this TCRC page that begins, "Some countries in Europe..." before deciding. I don't favor chemotherapy "just in case."

[nzsteve]

Hi,

From memory the halflife of AFP (I think you mean this rather than ALF?) is around 7 days - That would mean that 1 week after the surgery in your sons case the AFP should be around 45, 22 after 2 weeks, 11 after 3 weeks and considered 'normal' after that, which ties in with what youve been told.

Surveillance vs treatment is a tricky one Ive gone through chemo and had an RPLND after going onto surveillance, but based on my original pathology report I think I made the right decision at the time (as stupid as that sounds now!). I should have been in the good risk group, <30% chance of reocurrance in first year. The side of that I looked on was I had a >70% chance of needing no other treatment, ever, which to me sounded a pretty good path to go down!

Do you have access to the path report from the surgery? The make up of the tumour removed, and signs of spread outside of the tumour itself will have some impact on your decision. Other angle is with surveillance you must keep every appointment (eg dont get complacent in 6 mths when the last 3 checks have all been clean), and be able to live 'knowing' there is a chance it will come back over the next few years.


Hope that helps,

Steve

[cgd]

oops on the AFP -
The path report shows "immature teratoma 50-60%, yolk sac tumor 40-50% and embryonal carcinoma 5-10%" and, if my interpretation is correct no spread outside tumor (invasion limited to testis; pNX and pMX cannot be assessed; spermatic cord & other margins = uinvolved; direct extension of invasive tumor and venous/lymphatic invasion are both absent). Fortunately, my son is pretty compliant kid but he's off to college in Chicago next year, so that adds a bit of complexity.

Comments on adjuvant chemotherapy were helpful; that the oncologist here in KC has reliatively little experience (40 cases/12 years), it's critical for me to learn as much as I can, get 2nd opinion, etc. - thanks.


Left I/O 12/27/05,
Mixed non-seminoma,pT1NXMX
CT Normal; Markers 1/3/06 HCG 0.6, AFP 30

[Scott]

Note that teratoma, which is technically a benign growth, doesn't respond well to chemotherapy and must be removed surgically. When you meet with Dr. Einhorn, be sure to also discuss a third option: retroperitoneal lymph node dissection or RPLND surgery.

[Jens]

Hi cgd.
I'm sure your son will be fine. And of course he will keep his surveillance scheme in Chicago or anywhere else...

I had biopsies taken from my enlarged lymph nodes prior to chemo. As my onco said, "we don't pour that amount of poisen into someone whitout being sure it's really needed!" So I'm on the side that says "no, but thanks anyway" to prophylactic chemo. The main reason is that, if it is really needed (metastases), it is highly effective. But it has it's costs.
Taking your path informations into account, I'm even more inclined to encourage surveillence.
I agree with Scott though, regarding the teratoma component and the hereof following potential need for RPLND. Whether or not one should have prophylactic major surgery is a difficult question.
But the path report really says "low risk of spreading"

This could grow into a long mesage, so I will cut it short and just say that I think life is to great to waste on worries about what may come. One could end up doing all kinds of drugs and sugery to (try to!) prevent... well, everything.

Best wishes
Jens

[Chris'Mom]

Hi...my son's initial path report also said no spread, contained and no cord involvement etc...everything you would want to hear...but after the first cat scan it had spread to three nodes in the pelvic area...he had four rounds of chemo and RPLND because in his original tumor he had a small amount of teratoma and it also spread...but of course, you have to explore every avenue, and having chemo is a tough call to make. Chris' AFP did not go down enough though, it was 40 when he started chemo, so that is why he needed it...hope this all helps...Mary Ellen

[cgd]

2nd Opinion Well Worth It

Thought I'd follow-up. We met with Dr. Einhorn - what a remarkable doc! He was very clear on his recommendation: Surveillance. He recommended that he follow NCCN practice guidelines (our local oncologist said months between markers/CTs about 3-4 months vs. guideline of 1-2). Most interesting was his discussion about relapse. He indicated that every 2 months over the 1st year, the chances for relapse would generally drop about 1/2. So ... my son's relapse % was projected at 25%, in 2 months, it will drop to 12.5% and so on. Math aside, he indicated the greatest chances for relapse are in year one. I don't know if this is true for all - anybody else hear this before?
We are cautiously optimistic and labs are due again later this week.

[Scott]

That's great, I'm very glad to read about your consultation. Good luck next week!

[Don]

Dr Einhorns information is what most other doctors reiterate everyday--his research and findings along with IU's research is what is taught and practiced in just about every cancer facility treating TC in the USA!!!! Before you know it your son will be back to a normal life. One day at a time!!!!!

Glad to hear that your son is doing well--Hope you get good results next week. Best of luck!!!!!! DON