RT vs. Surveillance for Stage IS Seminoma

[cheitzig]

I was diagnosed on 2/28 with Seminoma. Had a CT on 3/1 and a right orichectomy on 3/2. CT was normal. Tumor levels of HCG and LDH were slightly elevated. AFP was normal (I don't recall the exact numbers, but both HCG and LDH were both just above the high limit).

In my case, the CT happened to identify that my appendix was inflamed. It took a couple of weeks to get in to see a general surgeon, and I had my appendix taken out on 3/27. (The urologist and general surgeon talked the day before my orichectomy, and left me a v-mail at work suggesting removing it same day, but I missed the message. Drat-- two surgeries instead of one)

Which leaves me where I'm at. Once I've healed for a couple of weeks, I can either go down the radiation therapy (RT) route or the Surveillance route. I'm already a few weeks down the Surveillance route

I'm very interested in feedback from folks who have similar cases and have decided on RT vs. Surveillance. Specifically, what are some pro's and con's associated with RT vs. Surveillance that people have seen. Note that I'm compiling a list, and have read some posts and certainly the http://www.acor.org/tcrc/radiation.html and http://www.acor.org/tcrc/surveil.html .

Best Regards,

Charlie

[dadmo]

Charlie:
Welcome to the forum. If your markers come down to normal and all your films show no spread it would seem that surveillance would be a great choice. Save the radiation for when you're sure it's needed.

[djmac]

Charlie:
Welcome to the forum. If your markers come down to normal and all your films show no spread it would seem that surveillance would be a great choice. Save the radiation for when you're sure it's needed.

Also factor in your pathology (tumor size, LV invasion, Rete Testis spread) and your age, and most importantly, your psychology. My first 3 months of surveillance were horrific because I'm a bit of a hypochondriac. It's getting much better now, however, and I'm glad I chose this path.

Regards,

djm

[rjs]

RT vs Surveillance for Stage 1 Seminoma with no spread really can boil down to a personal decision for each patient. The tumor size and elevated markers may be an additional consideration in your case, but you did not elaborate on those numbers. Your ability to easily get to the radiation treatments may also be a factor for your situation versus the regular follow-up schedule you will be required to keep if you choose surveillance. Take into consideration your mental state during the surveillance process. Ask yourself how you will handle the rigorous schedule and the watching and waiting game. I personally chose RT and have never had any second thoughts. I wanted to take all the reasonable steps necessary at the time and adjuvant RT is a very reasonable and proven course of treatment. Side effects were rather light compared to what one experiences with chemo, but they can hit you hard depending on your age and physical state. Nausea is common and extreme fatigue as you run through the treatment course. But I was able to keep working my office job through-out, stayed relatively active during the 4 weeks with some light work-outs, and made sure I got plenty of rest. Stage 1 Seminoma is a good diagnosis (if that is even possible with cancer), because the odds are highly in your favor. But it also presents the challenges that come with making choices on the next steps. Asking questions, talking to your doctors and family, and making the decision that is right for YOU is the only way to go.

[Fed]

RT vs Surveillance for Stage 1 Seminoma with no spread really can boil down to a personal decision for each patient.

This is totally true. After I was diagnosed with seminoma, I was dead-set on getting radiation mostly because I wanted the best odds possible to avoid a relapse (98% for RT vs. 80% for surveillance). Nevertheless, after lengthy consultations with my medical team, I opted for surveillance. The reasoning, which was shared by my urologist, two med oncs, a rad onc, and a second opinion from Sloan, was that in my case with a such a small viable tumor (ca. 1 cm), without markers or LV invasion, RT would likely be overkill. My docs at Dana-Farber noted that the newer trend is NOT to recommend RT unless you are staged at pT2 or higher because it has been documented in the literature that the incidence of secondary cancers is greater for people that have undergone RT (note that these are long term effects, say 20 years down the road or so). They did emphasize, though, that I need to stick to the stringent surveillance schedule of CT scans and bloodwork every 4 months for the next 3 years (every 6 months for years 4-7, and every year thereafter) so in the event of a relapse (between 12-20% probability according to my docs) I can catch it early enough to ensure a cure.

You really don't have any bad options, and that's one of the "benefits" (not really the right word, but nothing else fits here) of having a stage I seminoma diagnosis. By now you should have had your first set of post-op labs. If your LDH and HCG levels have gone back to normal, then surveillance is likely a good choice for you as long as you can handle the inherent anxiety and the lab and radiology schedule.

Feel free to write up more if any other questions arise. Best of luck,

[Karen]

Welcome, Charlie! What was you final path report as far as size of the tumor and invasion? My husband chose RT because the frequency of the follow ups, higher % chance of recurrance, and stress of waiting for results was something he didn't have the patience for. He had no lymphovascular invasion, but on the small chance there was micrometasteses he wanted to hit it fast and hard and went with RT. There's no wrong path; it's whatever you are most comfortable with.

[GAH]

Hey Charlie, welcome.

I went surveillance. I thought the odds were good (even with reoccurence and subsequent treatment survivability is very high) and I had a 'best case'.

I also knew I'd keep up on the appointments. The first several found me quite anxious the week of the tests, but that's subsided. Now, I may have a few thoughts fly through my brain as I'm waiting for the Dr. to enter the exam room but that's about it.

Like others have said, it's a personal choice. My markers never moved, so your situation is different. But, I will be happy 10-20 years from now knowing I didn't get pelted with radiation (except for the CTs and x-rays).

I'm now close to 20 months into it with no signs of recurrence.

Best of luck,

Glenn
________
indica strains

[SleepyGuy]

For me the decision to get RT was based mostly on the size of my tumor and invasion. The other factors that tipped my decision towards RT were just the circumstances I was in. I had found out I had TC just 1 day before I was about to leave town to finish my last semester at college. Once I got the pathology and talked to my Oncologist, who said I had a relapse chance of over 35%, I decided it would be easier for me to do the radiation now vs Chemo/RT later. I plan on going into grad school and I knew that taking off a semester then would be more difficult later on than it would be for me right now.

On the other hand, if my tumor had been small and confined, I would have opted out for surveillance. I know people, including myself, dont like the idea of surveillance because of the anxiety, but at least for me right now, I dont think my anxiety levels have really gone down that much knowing that I got RT.

[cheitzig]

I chose RT...

In the end, I chose RT. I've completed 14 of 17 treatments (final one next Wednesday!), so I'll end up with a total of 25.5 Gy's (1.5 Gy per day for 17 days). The Radiation Oncologist recommended just the retro-paritonieal (sp?) lymph nodes as oppossed to dog leg, and I went with his recommendation.

Not so much for the evidence one-way or the other, but more for a mental / future thinking. Thanks for all of your replies.

For anyone else considering this, the biggest driver that occurred to me is that I'm in a good position, employer-wise right now-- I have good support from my boss and my team. It occurred to me that a 20% chance (or so) of additional cancer five years from now might occur at a time in my life when I am (say) unemployed, looking for a job, working for a less-than-optimal manager or whatever, and given the similar results, going with the "bird-in-the-hand" approach seemed easiest. It was also the option that the

I got my post-op markers back last week (someone above asked about this): all back to normal, so that's good news. Also, someone asked about size: I don't recall exactly, but I think my tumor was around 4cm.

Overall, I feel okay with my choice. I almost sort of "passively" decided-- I just followed my docs recommendations in the end, with the additional thoughts above.

I don't yet know what the post-RT follow-up schedule is though. My oncologist is going to follow-up with me (as oppossed to urologist), and I meet with him in the next couple of weeks.

Any good articles on follow-up schedules?

[Scott]

You'll find follow-up schedules posted on the After Treatment page in the TCRC and on page TEST-3 of the NCCN guidelines.

The NCCN recommended follow-up after radiation therapy includes physical examination, tumor marker tests, and a chest x-ray every 3-4 months in year 1, every 6 months in year 2, then annually.

[leaffan-Dave]

I had RT March 2 - March 27. I still wake up thinking about cancer. Work all day... thinking about cancer. Eat supper with family...thinking about cancer. Go to sleep ...thinking about cancer.
My doctor says this will pass in time. Hope he's right!!

[Scott]

I have to admit I'm still pretty obsessed myself. I channel those feelings into supporting other survivors, and advocacy and fundraising for the fight against cancer.

[Matt_24]

I'm choosing RT.

I'm Stage IA Seminoma. Path and Pet scan were both clear - although they said there could be one node that is borderline, but far from definitive (well radiation doc said this, but urologic oncologist said "no definitive nodes")...but my Oncologist said he feels RT is the best option.

I go in for my radiation simulation today. Should be a barrel of fun. I have to pick up my prescription for Zofran and Immodium today.

In 2000 my Grandfather died of Liver cancer. In 2001 my mother (grandfather's daughter) died of liver cancer. Apparently she had hers in earlier stages when he was dieing. Neither of them drank.....just happened. My 83 year old grandmother has a mass in her kidney that is probably cancer. With all of this, I probably only thought of the word cancer once over the weekend. I'll admit though, I had kind of a rough time last week thinking about it - when I was waiting on PET scan results. I've decided that TC is the only cancer I'm going to get. Think that will work? LOL

Now, I just put all of my worries on God - and it really makes me feel much better. I'm learning quickly that stress and worry don't change anything. I can waste mass amounts of time worrying/obsessing about cancer (which won't change anything) or go on with life, and look at it as a "do what I have to do" situation. I'll let the Dr's diagnose and worry about it. That is their job. I can research and learn everything I can about the disease...but that only gives me enough information to increase my worry and stress. I'm still not a doctor and won't know anything definitive until I've been checked out.

Here is something for you:

A peaceful mind
> +++++++++++++++++++
>
> There is enormous power in peace. Seek to let your mind be filled with
> peace, and your life will benefit greatly.
>
> Worry wastes your precious time, resentment destroys your effectiveness and
> anxiety drains your energy. A peaceful mind, on the other hand, puts you
> firmly in control and out of the reach of the world's negative distractions.
>
> Peace comes easily and naturally when you stop fighting against what is.
> Accept the reality of this moment, let go of the need to need, and
> experience the peace that is already here.
>
> Peace is what you find when you let go of everything else.
> Peace requires no real effort other than the realization that you already
> have it.

Beneath the noise, beneath the chatter, there is beauty, and there is peace.
Visualize your concerns as moving quickly away from you, until they disappear into nothingness.

Empty your mind of the stressful thoughts, and peace will fill the space
left behind. Be at peace, and every thought, every action, every moment will
move you toward real richness and fulfillment.

Ralph Marston

[fuse929]

I had a 1A seminoma, and I decided on surveillance for the following reasons:
1. There was no invasion of any kind visible.
2. I never had elevated markers.
3. My post I/O CT was clear.
4. My urologist told me it was the earliest he has ever seen TC caught.
5. I'm fortunate enough to live less than a mile from the hospital. I actually drive past it every day on my way to the lab, so following up with surveillance protocol is not a burden.
6. I can deal with only a 15-20% relapse rate.

Bobby

[kellyrulez]

My docs at Dana-Farber noted that the newer trend is NOT to recommend RT unless you are staged at pT2 or higher because it has been documented in the literature that the incidence of secondary cancers is greater for people that have undergone RT (note that these are long term effects, say 20 years down the road or so).

you don't happen to have references for this statement, do you? I've read similar information, e.g., on the ACS website, yet w/o any references.

thanks.