Update on Status and Treatment

[Dave40306]

I found out today that the last CT scan (Monday 8/14) shows "all clear" in regards to the few lymph nodes that were enlarged before I started chemo back in May. The nodes were never that large - less than 2 cm - if I recall correctly and there was no spread found anywhere else.

The blood work with the exception of the LDH is also "all clear" and back to normal. The doc isn't putting much emphasis on the LDH because it can be raised just by the chemo and by the clot I have in my renal vein. My LDH was never even checked in the beginning.

So, now it's time to decide - RPLND or Surveillance. Based on my initial consult with Sloan, it sounded like they would push for the RPLND no matter what happened with the nodes after chemo just because it was a non-seminoma (100% yolk sac) and because there was some minor spread to the nodes. My doc also thinks they would say "do the RPLND" at this point. He doesn't completely agree and will consult with Einhorn and others at IU on Monday to get their opinion.

It really sounds like I could have different recommendations and the decision will be totally mine to make. I realize that the follow-up visits without the surgery are a lot more often, including more frequent X-rays and CT scans, but I'm willing to go through that to avoid the major surgery and potential complications.

Has anyone else here gone through a similar situation and NOT done the RPLND? If I decide to avoid the surgery but the Cancer does come back say 6 months to a year down the road, what kind of treatment options do I have then? Would I then be looking at High Dose Chemo w/stem cell and marrow transplants and/or surgery? (I will also be asking the doctor(s) these same questions when I talk to them next week hopefully).

The more I think about it, this could really be a tough decision if all the doctors and experts don't agree 100%.

No matter what happens, I do feel very fortunate that the chemo has done the job and right now I'm apparently Cancer free!

Dave

[Mom]

I really don't see the necessity of the RPLND. My son had one lymph node in question with LI and had 3 x BEP. Based on his results (markers were normal during second round of BEP) they saw no need for a RPLND. His CT scans so far have been clear. He had EC plus some teratoma. I think you will have to listen to what your doctors say and make the decision. Unless you were chemo refractory which it looks like you're not, what would they be looking for? Dianne

[Dave40306]

Dianne,

Sloan is most concerned with residual Teratoma and what it might turn into down the road. That along with any possible remaining Cancer is what they would be looking for, I guess.

I've read that 70% of the people that get the RPLND didn't actually need it but that, in most cases, there's still some theraputic value in it even if it only means a decrease in the required follow up doctors vists and CT scans. Kind of a piece of mind thing for some.

My AFP also went to normal after my second round of EP.

[IowaBrian]

I know my URO said if I ever needed chemo and nodes were involved that the RPLND would be in my future no choice. Well easy for him to say that. I would go with what Dr Einhorn thinks is the best choice for your situation since he has about the most knowledge of anyone in the field. Saying that I am watching and waiting after the I/O and it is stressful so I can't begin to understand how you feel after chemo I too would really wonder if it is really needed since I am not a big fan of surgery. As you know we will support you no matter what you want to do. Good Luck
Brian

[Mom]

Why would there be residual teratoma if you had 100% yolk sac? If there was live cancer, wouldn't your markers be raised? I would just hate to see you go through this operation for nothing. I don't mean to be argumentative, I just wonder why it is recommended in some cases and not in others. My son was on blood thinners throughout his chemo because of blood clots (arms). Watch the drinking while you are on the blood thinners. Dianne

[mikeygti]

Dave,

I too went through chemotherapy as a primary treatment for mets to the lymph nodes. I was told by the head Oncologist at the BC Cancer Agency,that RPLND would ONLY be a required IF there were any masses 1cm>remaining post chemo. PLEASE get a second expert opinion.

BTW...Congrats on finishing your chemotherapy !

Best Wishes

[DianeE]

Hi Dave,

I have to agree with "Mom" on this one. One of the primary reasons
my son (BREwing) was told that the RPLND was a good idea for
him was because of teratoma in the pathology report, which you
didn't have. If there's nothing there, what are they expecting to remove?

Diane

[Dave40306]

When I went for my consultation at Sloan they told me that teratoma can be present in the nodes after chemo regardless what the original path report states. I'm not sure how this happens but the doc said it several times.

Maybe I misunderstood them (I don't think I did. I was paying VERY close attention to every word.) and I will check back with them again.

It appears to me (and my Doc) that Sloan seems to recommend the RPLND a lot.

I had another Onc. tell me just about the same thing - That my need for the RPLND was based more on the type of my tumor (agressive non-seminoma) and spread to the nodes than what the post-chemo CT scan shows.

I will wait to hear what IU has to say and I will also contact Sloan to get their opinion on my situation.

Thanks for all the thought provoking input. It's just what I need to help me make the right decision.

Dave

[matthias]

There is something called chemically induced maturation: in simple terms, certain types of non-seminoma (but not pure seminoma) can mature into teratoma on treatment w/ standard chemotherapy.

Ultimately, transformation of mature teratoma has the possibility to get one into real "trouble", by, for example, progressing into sarcomas, PNETs, and "schtuff" you don't want to have to know about.

/M

When I went for my consultation at Sloan they told me that teratoma can be present in the nodes after chemo regardless what the original path report states. I'm not sure how this happens but the doc said it several times.

Maybe I misunderstood them (I don't think I did. I was paying VERY close attention to every word.) and I will check back with them again.

It appears to me (and my Doc) that Sloan seems to recommend the RPLND a lot.

I had another Onc. tell me just about the same thing - That my need for the RPLND was based more on the type of my tumor (agressive non-seminoma) and spread to the nodes than what the post-chemo CT scan shows.

I will wait to hear what IU has to say and I will also contact Sloan to get their opinion on my situation.

Thanks for all the thought provoking input. It's just what I need to help me make the right decision.

Dave

[Scott]

You'll notice the experts don't all agree on the best approach, in the NCCN guidelines. After chemotherapy for stage II or III non-seminoma, with normal markers and a clear CT scan, both options -- surveillance and RPLND -- are listed with a "category 2B" disclaimer, meaning "non-uniform consensus but no major disagreement."

[Lori]

Dave, can't help with the RPLND vs surveillance, but wanted to say a big congrats on completing the chemo and being cancer free!

[tccancercop]

Dave,

I was originally treated with 4 x EP. Markers normal after the second or third cycle.

6 Weeks later my AFP went to 22.... then 52. .102..150. .. to over 600!
I ended up with a tumor around my spinal cord inside the spine between shoulder blades. I was admitted to the hospital for lose of feeling in my legs and started ifosfamide,cisplatin, and vinblastine chemo along with radiation.

Now i'm doing a stem cell transplant. My latest AFP dropped to now 26.

My point, I was never offered an RPLND as an option.

I think that if I would have had one done, possible this reoccurence never would have happened!

[kollerjones]

My husband also had an RPLND after his second course of treatment when he was considered "cancer free". Pathology reports stated that the majority of they removed was necrotic tissue or mature teratoma (benign tumor growth). However, after 2 1/2 years. the cancer returned for a third time requiring the tandem stem cell transplants. (He is also non-seminoma.) Following the stem cell, they did addiitonal surgery to remove more tumors even though at that stage he was back in remission. The surgeon explained that 99.9% of a resiudual tumor can be benign. But that minute .01% left can still make a come back as active cancer down the road. It is not a minor surgery and will require some resolve on your part to deal with it. My advice, however, is to go after the SOB as aggressively as possible regardless of whether you are considered in remission or not. You do not want to have surgery with elevated tumor markers any way because exposure to air makes cancer spread. Better to be safe than sorry and take advantage of the normalized markers. It means your body is in the best possible state to manage the surgery Had my husband not had the RPLND he literally might not be here. As it is, the oncologists are suspect it may have come back a 4th time! Eliminate this burden from your mind as much as possible.

Best to you,

Kim

[Dave40306]

Well folks, my onc doc actually got to talk to the famous Dr. Einhorn today and he said that Einhorn completely agrees that an RPLND is not necessary in my case. Einhorn thinks that I have less than a 5% chance of recurrance and that an RPLND would be overkill. My doc said he sounded very confident about this and didn't hesitate one bit about making the recommendation for surveillance.

He said he based his recommendation on the fact that my AFP post-orch dropped to 135ish and that I never had any bulky nodes prior to chemo. Now that the nodes are back to normal and the AFP went to normal after the 2nd round of chemo, he thinks I'm fully cured.

Based on this new info, I told my doc, "OK, surveillance it is". He said, "I'll see you in six weeks".

As far as the clot thing goes, it's really just a matter of getting the coumadin dosage right and then waiting for the next CT scan in a few months to see if the clot is still there.

So, I guess I've officially been given the "all clear". I'm a happy camper right now!

[Scott]

That's really great, Dave! Congratulations on your decision!