Subjective question? RPLND vs. Chemo

[lcrew35]

Hi all,

As I am trying to make the decision between an RPLND and surveillance I am wondering which is worse to deal with. I realize that everyone is different, but some input from guys that have had to go through both would be helpful. If you had to choose one or the other, which would it be?
While I am hoping for the best, I tend to expect the worst so that I am not devastated if in fact I get bad news. It helps me brace myself, and if the news is good, the celebration is even better. So if I go on surveillance, even though the doctors are saying there is a 70% chance that I would be cured, in my head I look more at the 30% probability of not being cured.

Thanks!

[ecaron]

Hi lcrew35,

I have had both chemo (4xBEP feb-april) and the RPLND (July) within the last year. While I feel I handled chemo OK. I would opt for the RPLND any day (if its an option) over chemo. I recovered quickly from my surgery, but I am still feeling the effects of chemo now. But its a personal choice. Go with whats in your heart.

[Fed]

In your case, there are several things you need to consider. I looked back at your previous posts where you noted your pathology was I-A with 60% teratoma and 40% embryonal carcinoma. Given the I-A staging, you are correct in assessing a relapse-free rate of 70%. The more aggressive component is the EC, and since you didn't present with any markers, you would be relying entirely on CT scans to spot a relapse. If something shows up on the CT scan, then chances are you would get chemo, but any post-chemo residual masses would have to be surgically removed because they could be teratoma. On the other hand, if you do an RPLND now, you would get more accurate staging, but EC can spread hematogenously and bypass the nodes which would make the RPLND non-curative.

I'm a big proponent of saving the ammo for when you really need it. With a confined tumor and no evidence of invasion, I would go on surveillance keeping in mind that a) a relapse might mean further treatment such as chemo and/or surgery, but b) the relapse would still be highly treatable and carry an excellent chance of a cure. Note that this is what I would do, and you need to consider whether you are willing to endure the anxiety surrounding a surveillance management strategy.

Fed

[lcrew35]

Thanks for both of your replies. I had a second pathology report done at IU and it actually came back with 70% teratoma, 30% EC with none of the mutations originally seen by the pathologist here in Ohio.

Luke

[Fed]

Thanks for both of your replies. I had a second pathology report done at IU and it actually came back with 70% teratoma, 30% EC with none of the mutations originally seen by the pathologist here in Ohio.

Luke
Luke,

I think that the greater teratoma component is even more reason to go on surveillance. Teratoma grows very slowly, and because of the "confined" nature of your primary, chances are nothing ever got out.

Fed

[Jay68442]

I'm no expert but here is my thinking. With no enlarged nodes or evidence of invasion I would rule out RPLND. I think surveillance is your best option for now. If I had to make the choice between chemo and RPLND I would choose chemo. Chemo hits cancer cells in the entire body and as Fed mentioned EC can bypass the nodes.

[ATLfuzzy]

Perhaps 1 or 2 rounds might be a different story, but ....

4 x EP vs. RPLND? RPLND was much easier than the chemo. (or so Jerry says).

Regardless, most important of all, the best choice is the one that brings you best chance for cure & one that you are at peace with.






Hi all,

As I am trying to make the decision between an RPLND and surveillance I am wondering which is worse to deal with. I realize that everyone is different, but some input from guys that have had to go through both would be helpful. If you had to choose one or the other, which would it be?
While I am hoping for the best, I tend to expect the worst so that I am not devastated if in fact I get bad news. It helps me brace myself, and if the news is good, the celebration is even better. So if I go on surveillance, even though the doctors are saying there is a 70% chance that I would be cured, in my head I look more at the 30% probability of not being cured.

Thanks!

[Fish]

Even though I had an RPLND for my TC1, given your circumstances, I would have probably opted for surveillance. I had a test called an lymphangiogram - which is not used any more - that indicated abnormalities in my lymph nodes, hence the reason I did the RPLND. The abnormalities turned out to be natural defects in the nodes. If the lymphangiogram had not been used, I would have been on surveillance.

I believe in using the least amount of treatment possible to ensure a cure, and if there is no evidence of active disease, you don't take any treatment, Of course not everyone can deal with the waiting and uncertainty. Ultimately you have to go with what gives you the most peace of mind.

[MRMRSU]

Okay gentlemen, I'll be the odd-(wo)man-out here. Perhaps the oncologists we consulted with hammered home immature teratoma that we became so fearful of it. Andy's peace of mind was having the lymph nodes come out. Despite the complications, he has never looked back nor regretted his decision for RPLND. He felt compelled to be aggressive and as weeks passed while he mulled over the decision, the uncertainty and the unknown seemed much harder to bear, so surgery it was.

Hey Luke, I think maybe I'm thrown by the title of your thread...your oncologist is not suggesting chemo, is he? Or are you worried about chemo down the road if you choose surveillance now? I have no doubt that you will make the right choice that's right for you. I don't think you could go wrong with either surveillance or surgery.

[lcrew35]

You're correct, my oncologist (Einhorn) is not recommending chemo now, my two options are surveillance or RPLND. The reason I posed the question the way I did was because I was operating under the assumption that there was at least a 30% chance that I would need chemo in the future and the RPLND would drastically reduce that probability. I know it's only 30%, but I know myself well and the fact that 3 out of 10 guys would need chemo doesn't reassure me. So, I know it isn't either/or but it helped me to think of it that way in making my decision.

I really appreciate everyone's input. I've decided to go ahead with the RPLND and will have it done this coming week at IU. It was a hard decision but as soon as I made it (with the help of family, friends, doctors and you guys) I honestly felt great. If you have any suggestions in prepping for the surgery let me know.

Thanks again, wish me luck and I will keep you all posted!

PS - don't forget to vote!

[MRMRSU]

Hey Luke...I have no doubt that there was a sigh of relief after you arrived at your decision. Full focus forward. There are some great tips in the thread (http://www.tc-cancer.com/forum/showthread.php?t=8310) by "mike's mom" from other RPLNDer's that you should check out. Let us know when your surgery is scheduled.

[lcrew35]

I'm headed to Indy tonight for surgery tomorrow. Wish me luck! I'll report back here when I'm back home.

Luke

[smoothee]

All the best tomorrow, you're in good hands. Keep us posted.
Take Care,
Damian

[MRMRSU]

Good luck to you Luke! Hoping for the best and we'll talk to you when you're back in the comforts of home.

[lcrew35]

Change of plans - I was in the gown and ready to go and the doctors reviewed my latest CT and blood work and it turns out there has been some spread which would have made the RPLND pointless. Sooo I'll begin 3 cycles of BEP here pretty soon. Sort of a shock to the system after being ready to go with the surgery, but I'm doing good.
I'm still processing it all, but I'm sure I'll have lots of questions about the chemo. Right now the biggest thing on my mind is where to have it done. I'd like to do it close to home but can drive further for more reputable hospitals if that leads to a better outcome.

Thanks for the well-wishes!

[Margaret]

Best wishes for the start of your treatment. :)

[Paul54]

Sorry to hear you have to take a nasty detour. It just isn't fair.

Many guys get chemo close to home. It is very formulistic as prescribed by your oncologist and/or super-specialists like IU. IU may want you close by to run CT's and get immediate readings. This is all very secondary, but if you go locally, consider things like allowing visitors, wireless internet, cell phone service, privacy, etc. You want to be as comfortable as possible. Do your research on whether you would prefer standard IV (elbow, hand) or a port or PICC line. Some local infusion centers may not accomodate your choice. They should be aggressive with getting anti-nausea meds into you, and being quick to switch if something doesn't work. It sucks that we even need to think about this.

Our prayers and best wishes are with you.

[Fed]

Well, at the very least this was caught before you actually went under the knife. You should be able to fare well with this course of treatment, though. Hang strong,

Fed

[MRMRSU]

I'm with Paul on getting your chemo close to home. And I'm voting for a PICC line so they don't have to keep poking at you. The veins start to "hide" after a while. You will get through this Luke.

[Cricketer]

I'd go with the PICC line. I didn't have one for my two cycles of BEP but by the second day of the second cycle my veins where playing hide and seek!! I'm glad I wasn't having a third cycle by the end of it. I've no idea where they would find a vein:o

[lcrew35]

The PICC line seems to make sense. I don't mind needles too much but I have a feeling that I might after several days of this stuff. I was initially leaning toward doing the chemo close to home, but am at least leaving open the option of doing it in Indy which it seems Dr. Einhorn would prefer. In that case I suppose I would just stay in a hospital for the big weeks. I live in a fairly rural town and while there is a hospital here I'm not sure that the level of care would be as high as it might be in Indy. My family definitely wants to see me get the best care possible (I and I do too, within reason).
Also, if I have to be out of town on a day that I'm supposed to get the bleomycin does anyone know if it is possible to arrange to do that at a different hospital than you would normally go to?