Time for a decision

[Ski11181]

I went to see the oncologist today and found out my desicion may not be so easy. He is leaning away from surviellance due to the fact that my tumor makers where negative pre surgery. So now I can either go with rplnd or chemo. I am still trying to take it all in. I thought i had my desicion made before seeing the doc today. I am going to take a few days and process it and then try to decide what best suits me. Any advice would be great. I am also waiting on the 2nd pathology report. The first didnt specify vascular invasion or not. So I really cant make a desicion until I get that piece of the puzzle.

[tccancercop]

what is the pathology? What was/is your tumor markers before and after surgery? FYI i was 24 when Diagnosed (25 now). Chose survelliance (95% embryonal 5% seminoma). AFP fell from 210 before surgery to 4.2 after. Well a month or so later, it started to climb. Had to do 4 x EP. AFP went to 4.6. . .hmmmmm i was thinking. Well sure enough 6 weeks later after 4 x EP, AFP started to climb again to over 600 with the tumor showing up around my spinal cord. Time for a week of VIP, plus 17 radiation treatments. Tumor gone, and off to cincinnati for HDC of 1500 mg/ daily x 3 and 750 mg Carboplatin x 3. This was one transplant, always tandem is done.

Now 9 months later I am still at 3.1-3.2 AFP since the first transplant. Hopefully, the second transplant was "overkill." Now we know this number is my natural level of AFP, not 4.2 or 4.6. I'm lucky though AFP is the only tumor marker i've had trouble with. If BHCG played a role in my whole fiasco, I'd probably would have died a long time ago.

My point, I should have done chemo FIRST instead of survelliance while my AFP was low (post surgery for a short time). Its a hard decision, but chemo isn't all that bad. . .sure it was rough espeically towards the end of EP, but you may want to consider it. I would also favor 3 x BEP to 4 x EP (one less cycle, and some doctors i have saw say they feel that bleomycin is a "must")

[italian_tc]

I don't know your patology report, but i wanna tell you my experience...
I was very scared by rplnd, i take a month to take the same decision...with 95% embryonal and vascoular invasion...
I did rplnd and it's no so bad...in the first 2/3 days you have morphine and you don't fell nothing...you sleep a lot, then you can have some more pain drugs for a week...after a week you can go home...
now i'm 3 1/2 weeks after rplnd, i can drive, i did a concert few days ago, i can work...i'm tired, with a little diffuse pain but every day is really better.
And the best is that now i have some chanche to avoid chemo...i'm hoping it!
Even if you don't chose to have surgery remind chemo works very very well...
I can assume from your words that you are stage 1 and cure rate for this is 98%...with surveillance or with rplnd...

the difference is that with rplnd you have more chanche to avoid chemo and all the side effects and long period risks...
rplnd take only 1 months of your life, chemo seems to be longer and worst...

good luck for all! everything you will chose will be the right chose...at the end you will be cured!
davide

[petep]

I chose surveillance...same pathology as you...no markers pre surgery...during surveillance, 2 months out...bhcg went up and I showed an enlarged node....did 3xBEP....

but if no markers and no vasc. invasion, clear chest xray and clear CT scan....chances are approx 70% you are cured with the surgery....that's why I chose surveillance....most important, einhorn & benedetto said as long as I kept to the surveillance schedule, if I did have a recurrence, having the 3xbep my "cure" rate would be the same, as if I had 2xBEP immediately post orchiectomy....

einhorn said either surveillance, rplnd or 2xbep were all good options for me....

one thing to consider with rplnd, is that with embryonal, sometimes it skips the lymph nodes and goes to the lungs via the vascular system....so there is a risk of doing an rplnd, and still needing chemo....

but most important, your cure rate is 98% no matter what.

pete

[PD081]

Was your oncologist leaning more toward chemo or RPLND? Did he give you a recommendation for which option he thinks is best for your situation?

[Ski11181]

Original path 95% seminoma 5% embryonal didnt specify vascular invasion.

The doc said he was going to consult with the other doctors on the team but I kept pressing him to tell which way he would go. He said if he had to make the decision by himself he would go with the rplnd.

[dt22207]

Hi Ski,
My doctor told me that surveillance was a good fit for people who's markers were elevated before surgery because if your markers went up once, it's very likely they will go up again in case of a recurrence. I'm extrapolating, but it sounds like your doctor has the same opinion and because your markers never elevated they're concerned that they might not elevate again in case of a recurrence, which would let the cancer go undetected. I was a nonseminoma Stage 1 Pt2, by the way. It turned out chemo was the prefered option for me.

I think you're right that the vascular invasion is a key question to answer, along with understanding what type of cancer you're dealing with and how it spreads so that you'll know whether removing the lymph nodes is an effective treatment. I'd also ask them what are the time limitations for starting these treatments because you wouldn't want to lose out on an option simply because the decision making process took too long.

If you haven't seen it already, one of my favorite resources is the NCCN guidelines for treatment. It really helped me understand the processes I was going through. It's been posted in the cancer resources room at:

http://www.tc-cancer.com/forum/showthread.php?t=4589

That provides a nice decision tree that shows how the different stages are treated in general terms. After looking at that, I was able to go to the resource center's website and get a little more detail about each specific type of tumor and the treatment recommendations. It's at:

http://tcrc.acor.org/

Take care,
Dan

[Fed]

Ski,
The proportion of embryonal is very small compared to that of seminoma, which is probably why you haven't shown markers to begin with. Embryonal doesn't always show markers, so it seems that in your case, the bloodwork won't help much in the decision making.

Although I did not have any of the more aggressive embryonal component, the point that tipped the balance toward surveillance rather than other courses of action (after much consultation with multiple docs) was that 1) there was no evidence of lymphovascular invasion based on the pathology; 2) the viable tumor was < 1 cm; and 3) I have ready access to a medical facility that would aid in keeping close tabs on monitoring my surveillance.

The RPLND is a viable treatment option; however, as many have said before, embryonal has the ability to travel through the bloodstream and plant itself in the lungs, at which point, removing the lymph nodes would not be curative.

It will be a tough call, but you should consider all of your options and try to trace a logical path for your further treatment.

[Already Bald]

Original path 95% seminoma 5% embryonal didnt specify vascular invasion.

The doc said he was going to consult with the other doctors on the team but I kept pressing him to tell which way he would go. He said if he had to make the decision by himself he would go with the rplnd.

Ski,
You only have 5% EC- that is good news! EC can skip the nodes and go into the vascular system- which is what happened to me. And my RPLND was negative...
I recommend you have your path read again, maybe twice to answer the vascular invasion question. Then you can make a more informed decision on RPLND vs chemo.
In my case, RPLND was much easier to recover from, with less long term side effects- chemo is a much bigger animal, I hope you can avoid it.
Best,

[AdrianB1971]

Maybe you'll consider strange but I'm glad I had embryonal Carcinoma because it has skiped my lymph nodes directly to the lungs. So the RPLND was not needed[in EC case is very ineffective]. I think that RPLND is a major surgery with posible major psichological side effects and 3xBEP [4xEP] can be censidered as an alternative

[mstlyn]

Robert is right. My son had 4x EP and there is a residual mass. He will be having RPLND soon.

Tammy

[Ski11181]

Thank you all for your advice. I have decided that I am going to go with rplnd. I comes down to the fact that I want to know now where I stand and this is the best way for accurate staging. Without the markers I am afraid of the cancer implanting itself deeper before we detect it on a ct scan.

I also think the doc is going to send me for a brain mri. I have been having some dizzy spells and he wants to check it just in case. I dont think its anything but better to safe then sorry.

[jaybird]

SKI

I think you made a good decision. Check the private message I sent you, there is a doctor in Denver that has done a lot of rplnd's and is very good (he did mine). I would be more than happy to talk to you about it over the phone if you are interested.

[PD081]

RPLND isn't so bad...the whole thing goes by pretty fast. I barely remember it, with all the pain meds they gave me.

[tccancercop]

Embryonal doesn't always show markers, so it seems that in your case, the bloodwork won't help much in the decision making.

Are you sure of this or is it that Seminoma doesn't always show in bloodwork??? I had 95% Embryonal so how do you know if it doesn't always show up in blood work (AFP)??????????????????????????????

[Scott]

Are you sure of this or is it that Seminoma doesn't always show in bloodwork??? I had 95% Embryonal so how do you know if it doesn't always show up in blood work (AFP)??????????????????????????????The TCRC (http://tcrc.acor.org/dictionary.html#hcg) says hCG is elevated in 80% of, and AFP is elevated in 75% of, embryonal carcinoma cases. Markers do show up often, but this is why x-rays, CT scans, and physical examination are all important, too.

[dadmo]

I'm not a math geek but I believe that would give us about 5% that would have no elevation in markers. That's certainly higher then I would have thought.

[Fed]

Based only by the math, the likelihood of showing markers in a tumor whose composition is 5% EC and 95% seminoma is about 7% (for HCG and AFP combined).
Just to clarify, since the last three of posts refer back to one I made earliker in the thread:

Embryonal doesn't always show markers, so it seems that in your case, the bloodwork won't help much in the decision making.

My line of thinking was that with such an overwhelming composition of seminoma, it would be difficult to make a conclusive call on prognosis using markers alone, hence the reason I concluded that "the bloodwork won't help much in the decision making." Like Scott said, this is why there are additional components necessary for an accurate diagnosis (CT scans, X-rays) and subsequent treatment decisions. Hopefully this clears out the confusion.

[AdrianB1971]

I had 85%EC and only HCG where elevated. AFP always was uin normal range