Another new member: questions on RPLND versus Chemo

[Stuham]

Hello all

My name is Stuart, 32 years old, Englishman just back from six months walking across the US (long story, I got to Kansas City, supposed to do more next year . A week before I was due to return I noticed a swelling in my right testicle - in under a week I had been seen by a urologist at George Washington University Hospital and had had the offending article removed. I spent a week recovering in DC and am now back in England. Without my travel insurance I shudder to think what sort of position I would be in now...

Anyway, today I got my pathology results and, of course, have questions that I am desperate to have answered. Here is my situation (I hope I put this right, everyone else here seems to have it down

S/P: Right Radical Orchiectomy Nov 22, 2006
Assessment: Non-Seminoma germ cell tumour Clinical stage 1b
Histologic Type: Mixed germ cell tumour - Immature teratoma 95%/Yolk sac tumour 5%
Primary tumour pT2, tumour limited to the testis and epididymis with vascular/lymphatic invasion
Tumour size: 6cm in greatest dimension, Additional dimensions 4.5X4.0

Doctor in the US favours primary RPLND. I quote from his email:

"I recommend surgery RPLND, if not observation followed by chemo + RPLND if the disease recurrs (oods in our favor of u being cured).

Chemo upfront should be avoided since if there is any tumor it will likely have some teratoma component and that one will not respond to chemo, in addition, chemo is not a freebie and there will be a great body of literature coming showing association fo 2ry malignacies with chemo for lont term testis cancer survivors"

OK, all of this has me worried but even 30 minutes spent searching on this site tells me there are some strong people on here and therefore I decided to share. I have some questions, and if anyone has any preliminary thoughts I'd be glad to hear them!

1. I understand that RPLNDs are not often performed in England/Europe - is this correct?
2. If this is the case, will a course of upfront chemotherapy even do anything for me, in light of any found tumour likely being teratoma?
3. I strongly got the impression from my doctor that he was not keen on chemo at all and was an RPLND man through and through. Can anyone make anything of what he means by "association fo 2ry malignacies with chemo for lont term testis cancer survivors"? I wish his spelling was better (nb. he was a very helpful guy though )
4. Has anyone else had a similar experience? The thing I guess I am most worried to see is the vascular/lymphatic invasion...?

Any help greatly appreciated - even if it is just links to UK support groups...I haven't lived in the UK for 4.5 years (have been in Denmark) and yesterday registered with a GP. I should have an appointment with a specialist within two weeks now. I don't want to lose any time on this if something needs doing...

Cheers,

Stuart

[dadmo]

Stuart:
From what you have said I would have to consider surveillence. With such a large component of teratoma and no invasion I wouldn't even consider it at this point. The reason the doctor is pushing toward an RPLND is so they can check the lymph nodes for live cancer and if they found some then it would be 2 rounds of chemo. My thoughts are to wait for some enlargement and then only have the nodes removed when needed. Heck even your doctor said that you are most likely cured. His point about chemo causing secondary cancers is very valid but perhaps a bit overstated. I believe your chance of a secondary cancer are perhaps a bit more then twice the normal population which is still very low and the effects if any arent evident for many years. Don't even consider not getting chemo today because of what may happen in 25 years or more.
When you meet with your local oncoplogist see what he thinks about close surveillence. It seems like a good choice to me.

[Scott]

Welcome, Stuart. I know from our side conversation that your AFP was elevated, so the first thing is to see it return to normal, which should be before Christmas. Assuming that occurs, I agree that surveillance seems to be a good choice.

[Dave40306]

Like Scott said, IF AFP goes back to normal AND CT scans are 100% clear, then surveillance is a good choice.

If AFP does not come back to normal but scans are clear, then it will be chemo for you.

If AFP goes back to normal but any nodes show up on scans, then it will be RPLND with the possibility of chemo after.

If AFP stays high and nodes show on scans, it will be chemo and possibly the RPLND after.

As you can see, at this point it is extremely important to know what both the blood markers and CT scans show. That will determine what you need to do next, if anything.

The problem with Teratoma is that it can "hide" and then come back to haunt you later. The doctors are Memorial Sloan Kettering in New York City would look for ANY sign of lymph node involvement and would want to do an RPLND right away if anything showed, given the high percentage of teratoma in your primary tumor.

[Tatt]

1. I understand that RPLNDs are not often performed in England/Europe - is this correct?
2. If this is the case, will a course of upfront chemotherapy even do anything for me, in light of any found tumour likely being teratoma?
3. I strongly got the impression from my doctor that he was not keen on chemo at all and was an RPLND man through and through. Can anyone make anything of what he means by "association fo 2ry malignacies with chemo for lont term testis cancer survivors"? I wish his spelling was better (nb. he was a very helpful guy though )
4. Has anyone else had a similar experience? The thing I guess I am most worried to see is the vascular/lymphatic invasion...?

Hi Stuart

I like in the UK in Hertfordshire, and am booked in for RPLND sometime in January, after having chemo last summer. From talking to my oncologist, there are only ~10 surgeons that have performed RPLND in the UK, so compared to the US it isnt as common. That said, the consultant that i will be with has carried out ~150, and I think another memeber Davie mentioned his had ~300 experience. SO the skills are there - probably just clustered about london.

I'm needing the chemo because of a swollen lymph node that remained after the chemo - which might be teratoma or dead tissue. I have to admit the prospect of the surgery is scarign me more than the chemo did, but by all accounts it will be easier to recover from and live with. The impression i;ve had form my oncologist is that with any vascular invasion, he would use chemo, maybe only 2 doses instead of 3 if there is no sign of swollen lymph nodes. Another patient was on that very scheme at the same time i was having chemo. Not sure how standard thatg is, but that has been my experience

[Stuham]

re: questions on RPLND vs. Chemo

Hi again

Many thanks for your responses fellas, all the information I am getting is extremely helpful. One thing I didn't mention in my previous post is that I did have a CT scan and the results came back clear. Since I posted yesterday I have been put in touch with a local consultant oncologist (south of London, Tatt, near Maidstone) and I will hopefully be seen for an appointment (and hopefully blood tests) within the next few days.

Will keep you posted on how things turn out. Cheers,

Stuart

https://www.walkingthestates.com

[Lori]

A few comments on Teratoma - it is chemo resistent and must be removed surgically. My husband's AFP was all over the board during chemo. He had surgery to remove what we were hoping was teratoma (and turned out to be) when his AFP was still above normal. After the surgery, the AFP was back to normal. Not often, but sometimes, a large amount of Teratoma can yield above normal AFP - not high but above normal.

Obviously, this all only matters if the lymph nodes are infected.

Good Luck!