Seminoma: Surveillance or radiation?

[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?

[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!

[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

[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.

[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.

[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]

Fish, I am on the west coast, and initially I only talked to my local urologist and rad oncologist. Then I contacted a urologic oncology department in San Francisco for a second opinion, and while every piece of information helps understanding what's going on in the body, I also find it confusing sometimes as opinion among experts do vary. For instance, I tried to get clarification whether the enlarged (<1cm) lymph nodes are likely metastasis or not, b/c I think it would actually help my decision for the 'right' therapy; but I guess CT scans just aren't explicit enough under a certain size of the lymph node, hence no unanimous opinion there. I am curious: have people here on this forum consulted with many doctors and experts before deciding on their therapy, and if so, did the different opinions really help or confuse more?

[Eric]

TC2006

I have received 20Gy that is the dose for adjuvant therapy. Some peoples receive 40 to 50 when they detect a spread. And yes it was the hockey stick or a kind of dog leg that involve stomach colon pancreas, bladder. All these organs becomes at more risk to develop cancer after been irradiated.

[johnseed]

Radiation

Hello there,

Since I opted for surveillance when I shouldn't have and then had to go through chemo, I would say "Take a good look at radiation and consider it.

Of course, since I never had radiation, I don't know how it would go.

JS

[johnseed]

&quot;refusing treatment&quot;

By the way...

When I chose surveillance it was after a long consultation with the radiation oncologist. During that meeting I expressed a strong preference for surveillance but did hear all the options. The doctor, at the time, told me he thought I was making a good choice.

When I applied for life insurance three years later my medical record showed that I had "refused treatment." In other words, by wanting to avoid radiation I ended up with a kind of black mark on my record. That must be how doctors and insurance companies cover their asses.

Of course, since chemo has worked for me it was all OK in the end.

JS

[tc2006]

Apart from that insurance nightmare (what a bummer!), why exactly do you think you made the wrong choice going with surveillance? Was it b/c of the tumor size, or any other circumstances? Anything suspicious in your CT or your pathology report at the time that would have provided a stronger argument for radiation ? And I take it you probably also (like me) talked to doctors, some who suggested radiation, others who suggested surveillance? How did you arrive at your decision, was it the long-term effects of radiation? How old were you (if I may ask) when you were diagnosed?

[tc2006]

oh, JS, and any history of undescended testicle(s) or inguinal hernia(s) prior to the tumor in your case?

[johnseed]

my story

Yes, I did have an inguinal hernia a few years before.

Regarding radiation, if I had been paying more attention I would have taken the pathology report a bit more seriously as it told me that I had probable or possible vascular invasion. My father, who has his own views on medicine really felt that I should avoid radiation and on top of that I had spoken to a man that had come through surveillance clear and that made me want to take the risk.

You should ask yourself "Am I willing to risk needing chemo?" Chemo is very tough and you should consider what effects it might have on your life and health.

JS

[TSX]

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% !?!

Yeah, that was my post. The 10% figure is apparently from more recent research than the 1% figure that many oncologists mention. I believe the journal article was published in 2004 or 2005. Even 10% is not that bad - what concerned me most was research that showed the risk factor for second cancers increases by a multiple of 2 to 4 depending on the specific type. If you have a family history of cancer, like I do, the risk factor can be very high as a result.

The truth is, outside of surveillance there is no treatment that will leave your body the same as it was minus only the cancer. If your nerves can take it, I'd recommend surveillance without question.

-TSX

[UK Mart]

Yeah, that was my post. The 10% figure is apparently from more recent research than the 1% figure that many oncologists mention. I believe the journal article was published in 2004 or 2005. Even 10% is not that bad - what concerned me most was research that showed the risk factor for second cancers increases by a multiple of 2 to 4 depending on the specific type.
-TSX

Interesting reading (especially as I start my radiation treatment tomorrow!)... but a figure we hear over in the UK is that on average, one in three people will get Cancer at some stage in their lives.
My oncologist gave me 'the best report possible' following I/O and I believe by having radiation treatment i'm minimising the risk of TC recurring. I expect that after this I'll be back to a one in three chance.

Also, now I think that when i go back for regular check-ups, i'll be of a mind set that i'm clear and i'm just having a check-up whereas if i had chosen surveillance then i think it would be in the back of my mind that there is a possibility that it had returned.

Does this make sense to anyone???!