Seminoma: Surveillance or radiation?

[tc2006]

Hi,

I am a brandnew member in this forum, but have read several threads and found them very helpful. I've been recently diagnosed stage I seminoma (despite a couple of nodes <1cm on my CT which I was told were probably not cancer), have orchiectomy behind me, and am now looking for information that could help me decide whether to choose surveillance over radiation, or vice versa, after orchiectomy. I have been told surveillance is becoming more popular especially in Europe these days, but have yet to find somebody with seminoma who has done it; most urologists in the U.S. seem to recommend radiation. My tumor markers were negative pre-OP, and my pathology is fairly clean (tumor confined to capsule). However, the tumor was pretty large (>5cm), and so I wonder whether I shouldn't almost 'count on' a relapse and hence rather do radiation. Can anybody in this forum provide any guidance? Thanks.

[kurt Hansen]

Hi
Here is my storie I have lost both my testicles and both times seminoma stage 1 first time in 1984 and second time 2 years ago.
In 1984 I had radiation and this time I am on surveillance.
My tumor was 4 cm and the hospital told me that when the tumor is less than 6 cm they put you on surveillance, in Denmark you don`t get to choose
yourselves,they tell you what to do.
I have no problems with surveillance I wish that I had been on that in 1984 too, I know the risk but altso know that I can be cured if I get cancer again.
But ofcourse you must listen to your doctor they know best what to doo.

[Krokar]

Hi,
it depends from country to country what they recomend but surveillance is for someone with good nerves I think. You can find many many discussions also on this forum and research articles comparing all treatement methods. In practice you can choose between surveillance, radiation or chemo with Carboplatin, even it is not still very popular in USA. Result is always cure rate near 100% and this is the best to know.

I don't know why they said to you that those enlarged nodes are probably not cancer ? Did they made a biopsy or they are not enlarged anymore ?

[Eric]

I think you should choose surveillance.
Radiation does not garantee a 100% cure(maybe 97%).
You should wait and if cancer spread i suggest chemo that give you less chance of getting another cancer. In 2001 i had radiation and i thought it was gone but 4 years later i had to go on chemo. Now i am fine but i had both treatment that raise my chances to get a second cancer. I think that a lot of doctors have change their opinion about radiation because some reduced chemo protocol do the same results with less long term effect.
I think radiation should be used only if you know that cancer is localized at just one place in your body, but not in adjuvant treatment because the chances are high that you receive unnecessary radiation.

[IowaBrian]

Here is a good article or guidelines that is linked in the library section

http://www.nccn.org/professionals/physician_gls/PDF/testicular.pdf

It is in PDF format so it might take a little while to download but it is very good reading.
Brian

[tc2006]

Thanks to you all, it is so good to hear from people that have been in a similar situation. Sometimes, I find it just overwhelming listening to the doctors - not that they are not competent, but they all have their opinion, and at the end of the day, you are alone making the decision.

IowaBrian, thanks for the link. I will definitively check it out.
Eric, your comments are very interesting. I actually thought a lot about the long term chances of getting a second tumor, but then again some people are telling me not to worry about tomorrow .. just get the seminoma treated today. Did you have any cancer in the family when you decided to do radiation, or was that not an issue?
Krokar, I have been thinking about the psychological stress of doing surveillance (somewhere I read that with surveillance, you can't be sure for up to 10 years or more if the cancer returns) - and also about the chemo that may be needed if I do relapse. My doctors said that b/c of the large size tumor, I am probably at 'high risk' to relapse, so I guess I am trying to rationalize whether the radiation really reduces my risk to relapse or not. The enlarged nodes make me nervous too - the doctors tend to think they are not metastasis, but maybe merely enlarged due to the orchiectomy. But then again, they are only on the right side which is where the tumor was ... the problem seems to be that with nodes under 1cm, the CT can't really tell what it is. I've been thinking about getting another CT before deciding what to do next ... do you guys think that would make sense, 4 weeks after surgery?
Kurt Hansen, how big was your first tumor? And why did the doctors put you on radiation back then, was surveillance not an option in 1984? Was chemo discussed when your cancer came back? How are you coping with the psychological stress of surveillance?

How real do any of you think the long term risk of radiation to develop a second cancer really is? My doctors talk about a less than 1% chance, but I read a post from somebody in this forum (TSX?) who said the chances are really more like 10% !?!

Anyhow, I'd like to thank all of you (and the rest of this great forum) for sharing your experience and taking the time to comment on mine. I hope things will work out ok for every one of you.

[Fish]

Hi,

I've had TC twice. The 1st time was non-seminoma and I did RPLND and then surveillance. The second time, In 2003, it was a pure seminoma. I'm just over 2.5 years into surveillance.

You're correct that tumor size is correlated with risk of spread - larger tumor = higher risk. Two other factors are angiolymphatic invasion (this refers to tumor cell invasion of the blood or lymphatic vessels) and age. Over 35 = lower risk of spread, and no angiolymphatic invasion = lower risk of spread. I had a small tumor, I was 42, and had no vessel invasion, so I chose surveillance. But these factors are statistical correlations and not guarantees one way or the other.

Also, even after radiation, there will still be follow-ups, although they tend to focus more on the chest rather than the abdomen.

There are a number of reports of secondary cancers following radiation treatment - see threads in the Research Library Forum. I do think that modern radiation is probably less risky than treatments from 10 or 20+ years ago.

You certainly could ask for another CT scan to check on those lymph nodes. They should be watched closely.

Surveillance certainly can be stressful, but it helps to remember that if anything shows up it will be caught very early.

You don't have an easy decision, but remember, whatever you choose, you will ultimately be cured.

Best wishes,

Jim

[tc2006]

Fish, I am over 40 and the pathology report said no angiolymphatic invasion. It also said no infiltration of the rete testis, but the tumor was "adjacent" to the rete testis (any idea anybody whether or why this matters?). What worries me most is the size of the tumor. I am also worried about having to go straight to heavy chemo - now or in several years? - if I do relapse. Then again, with radiation, I am particularly worried about a second cancer in the abdomen. My grandmother died from pancreatic cancer, and the CT did note a 'dense area' in my pancreas - the doctors say it's probably a cyst -, but I am quite worried radiation now may set me up for a second cancer in the pancreas (which I heard is basically not curable) or somewhere else in the abdomen down the road. I know nobody (including my doctors) will make the decision for me, but it's good to hear what other people did in a similar situation, and why.

[tc2006]

Ok, to make things a bit more complicated, maybe I should add that my tumor was described as an anaplastic seminoma, which I was told doesn't affect the treatment options, but I was also told that it does tend to be more agressive than the classic seminoma. So we have the tumor size (>5cm) and the anaplastic going for the radiation I guess. However, I also have a gastrointestinal condition with a diagnosis that is close to what is called 'inflammatory bowel disease' (anybody on this forum had that combination of IBD and TC??), and two radiation oncologists told me that they do not recommend radiation for people with IBD .... which leaves me with surveillance, I guess, except that even my gastroenterologist to this date has not been able to clarify 100% whether it is IBD or not what I have. Sorry, I hope I am not boring people on this forum with all these details , but you may now better understand why I am finding it so hard to make the 'right' decision between radiation and surveillance.

[kurt Hansen]

I think I had radiation back in 1984 because they didn`t have ct-scanners
then and because at that time the chemo had so bad side effects that it
was to tough on young men, but I don`T know, I don`t know my tumor sitce then And I asked the hospital but the record dosn`t tell ethier.
About being on only surveillance this time, I`m surpriced myselves but I don`t worry more this time than last time, my doctor told me that the longer time goes the less chance of it will return again and after 5 years he has never seen it return.
I think you will altso learn that day by day you will worry less and less I feel much better now mentelly than I did 2 years ago

[Fish]

Hi:

Don't worry you're not boring us, these forums are based on exchanging information. The more info we all have the better we can make decisions. You definitely have a number of conflicting factors, and a tough decision to make.

One thing about surveillance, the CT scans will not only detect TC spread, but will give you a very early detection of any other problems. I thought that one of the reasons for the low success rate with pancreatic cancer was the lack of early detection, certainly with routine CT scans you would catch any new developments very early and thus significantly increase the success of any treatment.

Have you met with a radiation oncologist yet? I consulted with one and expected her to try to talk me into radiation, but she actually told me that she thought surveillance was a reasonable choice.

At any rate, you need to look at all the risk factors and try to do a risk-benefit analysis to come up with a plan that you feel comfortable with. If it would help, talk to some more doctors. Sorry I can't be more help. My desicion came down to the fact that there was no evidence of metastatic disease and I did not want radiation unless I knew for sure it was needed.

Best wishes,

Jim

[tc2006]

I have talked to two radiation oncologists who both strongly recommended radiation over surveillance in my case. Their reasoning was that if the two enlarged lymph nodes were in fact metastasis, the radiation would catch it. They also said that the long-term risks of developing a cancer due to the radiation were probably very slim, albeit not zero (they did confirm that several organs, including the pancreas, would likely get hit with some amount of radiation during the therapy, and that that was inevitable). A third opinion came from a medical oncologist, who told me he would be equally comfortable putting me on surveillance or on two cycles of carboplatin as an alternative to radiation, with a preference for the surveillance over the carboplatin.
I do like your point about looking at the frequent CT scans as a way to detect other things besides TC spread in the body; there have actually been a few 'dense' areas in my last CT (liver, pancreas, kidney) where the radiologist said not to worry about as they were likely cysts, but of course nobody knows for sure. The recommendation was to monitor these things... How often does one undergo CT scans with surveillance, compared to the CT after radiation therapy?

[Scott]

How often does one undergo CT scans with surveillance, compared to the CT after radiation therapy?

Under surveillance for seminoma, CT scans are typically every three or four months. The TCRC's recommended post-treatment surveillance schedules don't call for CT scans at all after radiation therapy, as a recurrence in the radiated area is extremely unlikely.

[TimsWife]

What About Carboplatin

My husband was diagnoised with a Seminoma, Stage 1A in March of this year and was terrified of Radiation. We did not want to choose the Survelliance Route so we chose to do the two doses of Carboplatin. This is a newer approach, but we did a lot of research and it was the best choice for us. If you have any questions, I woudl be happy to answer them for you via email or this forum. There are other people on thi site that have used it as well, it is more common in Europe I think.

Best of luck, I know it is really hard to choose!

[tc2006]

Where did your husband do the carboplatin therapy? I believe not too many oncologists in the U.S. have experience with that, so I am just nervous in case something went wrong. I have also been told that (but don't know if it's true) that the long term risks of a second cancer with Carboplatin may not be all that different than with radiation. I do know though that Carboplatin seems to come up more often in Europe than here. How were the side effects, if any, for your husband?