Seminoma: Surveillance or radiation?

[tc2006]

Eric, same question for you (sorry for repeating myself): what dose was used for radiation in 2001 and what was the radiation field - 'hockeystick' or smaller?

[tc2006]

Kurt Hansen, what dose did they radiate you with in 1984, do you remember? And was the radiation field what's referred to as the hockeystick' field? Also, I know you are on surveillance now, but I am curious: would doctors in Denmark even consider a second radiation for a new seminoma, or would they only offer surveillance and chemo so as to not increase the total radiation dose? Or was this not a concern? Sorry if my questions sound 'academic', but I am just wondering what the options are with a second seminoma, since I am worried too that my second testis might develop cancer.

[Eric]

Hi TC2006

I was out for the week-end. So i am back today.
I have almost no story of cancer in my family. My grand-mother died from heart problem at 80 and they found the a little tumor in her colon. My mother is still alive and in good shape even if she smoke 3 packs every day. I think that my cancer is due to my undescended testis when i was born(undescended and atrophied) so i consider it like a congenital cancer. Back in 2001 when i had my radiotherapy, the onco has talked to me about stomach cancer that can be at higher risk with RT. But at the same time another onco told me that this probability was low. So i have gone through my treatment without asking more questions and BTW RT is way easier than chemo because i had almost no side effects and continued to work. When i relapsed in 2005 i have discovered this forum and found a lot more info on TC on internet than what i found in 2001. Sometime you try to go on the net to raise your moral but you can also find some frghtening statistics even on this forum. There are some frightening statistic about radiation on this forum but you need to think twice before conclude. A lot of statistics include peoples who had radiation in the 50's 60's and 70's. I had radiation with brand new equipement and it was just adjuvant radiation(much lower dose and more controlled than the 70's). I think we are parts of statistic that will be on the net in 20 or 30 years and probably will be less frightening. But if i had a second chance to choose my treatment and go back in 2001 i would choose carboplatin but in 2001 it was not usual to do this. This year i had my chemo with a young boy of 20 who had a hodgkin lymphoma. He had a considerable amount of chemo and also a considerable amount of radiation in the chest and has been cured. My onco said to him that his chances of getting another kind of cancer are almost the same as another. He said almost the same thing to me but i prefer to be vigilant in the future and do what i can participate to some screening program to early detect other kind of cancer.

[Fish]

TC2006:

I'm not sure where you are located. Have you tried to get opinions from any of the big cancer centers. Indiana University, Sloan, Cleveland Clinic, MD Anderson, etc?

This link is to the TCRC experts list: http://tcrc.acor.org/experts.html

Good Luck and keep us posted.

Jim

[TimsWife]

Carboplatin Treatment

My husband and I went to a medical oncologist after visiting with a radiation oncologist. We live in Arizona and I have talked with other people in the United States who have done this. Our Medical Oncologist also suggested it. I believe Sloan Kettering has offered this as a treatment, we were going to fly there if we could not receive this treatment locally in Arizona. The secondary cancer rate is a little less than radiation therapy, which is one of ther reasons we chose it! He completed his second of 2 treatments two weeks ago Friday. There was some nausea, some tiredness and a little restlessness, but not bad. This is a new treatment, so do your research and ready studies- after I did this, Tim and I decided that there was no reason not to chosoe this option. It is not for everyone, radiation has been the standard treatment option for years, but the secondary cancer rate alarmed us. I would also recommend talking with people who have done this treatment. If you woudl like more info, let me know!
Take Care!

[tc2006]

I am curious: is there anyone on this forum who chose surveillance with stage I seminoma AND a primary tumor larger than 5cm? I am just wondering how 'real' surveillance in my case is, i.e. am I kidding myself and should just go with radiation (or chemo) and ignore any concerns about the effects of radiation?

[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?

[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!

[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.

[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?

[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

[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

[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.

[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.

[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