Questions about radiation therapy.

**cts** · 02-02-06, 05:46 PM

History:
Orchiectomy mid Dec.
Stage 1 Seminoma (didn't spread, clean blood, ct scan)
Oncologist (and Urologist) recomend radiation therapy

So here I am today. I had my simulation appointment today. Next Fri. I go in for a test run and then start treatment the following Monday. I'm doing a 2 week, 5 day per week treatment at a little higher dosage than the 3-4 week treatment.

I've read about some of the side effects, tired, nausea, skin problems, etc. How common are these?

My appointments are 1st thing in the morning. Is it going to be tough to work after the treatment. I have a desk job so its not very physically demanding. Am I going to be able to go to the gym (weight train)?

Also, I've been doing some research and found that taking Glutamine can help during therapy. I already take it for weight training so I figure I'll continue. Anybody try Glutamine?

Any other tips or advice to make this process go as smooth as possible?

Thanks!

**dadmo** · 02-02-06, 06:43 PM

I'm not as well informed on radiation therapy as I should be so I have to ask a question. If you have had no spread why aren't you going into surveillance?

**Scott** · 02-02-06, 06:50 PM

In the NCCN guidelines, radiation therapy gets first preference over surveillance for treating stage I seminoma, largely because it reduces the odds of recurrence from 20% to less than 5%. On the down side, that approach does mean that many men get treatment they don't really need, and that treatment can have long-term effects.

**cts** · 02-02-06, 09:23 PM

Originally Posted by dadmo

I'm not as well informed on radiation therapy as I should be so I have to ask a question. If you have had no spread why aren't you going into surveillance?

Scott pretty much covered it but the Oncologist told me that with surveillance I had an 85% cure rate and with radiation it went up to 98%. After research, and talking with family/friends I chose radiaton.I figure its only 10 hrs (10 sessions) of my life and I would be pretty close to 100% cured.

**rjs** · 02-02-06, 10:11 PM

CTS -
The information you have about radiation is absolutely correct. My diagnosis was almost identical to yours and I also took the radiation route last summer. I did the 3 week session which I think is more common. Where are you being treated?

The side effects hit everyone differently. I had prepared myself for the worst, but luckily found it was not too bad for me. The fatigue will creep up on you over the sessions, but with the higher dosages you might find it hitting sooner. But there is definite fatigue...I had some of the deepest sleeps ever during treatments. You will probably find that you would like to take a nap all the time or just lay around. I also have a desk job and kept going to work the whole time with no real issues. I tried to keep working out during treatments. Keep in mind I am in Florida and it was July so everything with the heat seemed harder, but I did keep up a light work-out schedule and did some running and bike riding. I do triathlons so there was no way I could just not do anything. My advice is listen to your body, take it slow and you should be fine.

The nausea will also hit at some point. I never really got sick to my stomach, but there were times that I definitely felt like I was going to lose it. I actually found that eating (slowly) when nausea was at its worst seemed to help settle my stomach. The nausea would pass over the weekend, but then start right back once my Monday treatment was over. I had my treatments late in the afternoon so I usually went home and layed down for an hour or so before dinner or working out. You might find that allowing for some rest immediately after the treatments might help settle your head and stomach. I had a prescription for nausea meds, but neve took them. The nausea will pass within a couple of weeks after your treatments are done. The fatigue will take a little longer to pass, but it will. In hindsight, it was only after about 3-4 weeks when my energy levels were coming back that I realized how fatigued I really was during treatments.

Another side effect will be the loss of hair on the treatment area of your stomach (if you have hair). You will get a nice "block" of no hair that will last for some time. Even now I notice the hair grows slower there. I ended up shaving my chest and stomach so that it was not so obvious. And it helped keep up the markings they draw all over your stomach.

One more thing...not sure about your age or your desire to have children. But some doctors will tell you that the odds for infertility are very low because the treatment area is above the pelvis in most cases. But if at all possible you may want to consider banking sperm as a precaution. The higher dosages you will get may cause infertility either temporarily or in the worst case permanently. Its not the easiest thing to arrange for banking sperm in some cities, but it is something you can not take back if the worst case happens. At a minimum (and no matter what you decide on banking) make sure the treatment center places the "shell" over your remaining testicle. By now, everyone has seen and touched you so just suck it up and allow the staff to place your testicle in the shell before they shoot the rays. It is not fail safe, but it does help lower the amount of scatter radiation that can go to your testicles. Make sure you ask about this during your practice session next week so they can set everything up and mark your charts that the shell should be used. It only adds about 5 minutes to the session to set you up so its worth it. Some might considered it overly cautious, but this is YOUR treatment and YOUR body so make sure you let them know if this is what you want done.

Hang in there. These few weeks will pass and all will be normal soon. Once I put the sessions behind me, I got back to training. Since last August I did a triathlon and ran the Disney Half and Full Marathon. So this will definitely pass. I am now 8 months cancer free and moving on in life as a survivor! Above all, be strong!

**huckchef** · 02-03-06, 07:05 AM

dito on everything the previous posts have said! there will definitly be fatigue. probably after a few rounds. i personally had to take naps(2-3 hours) most days. sometimes whether i wanted to or not. i had 18 treatments monday thru friday and off on weekends. they did bloodwork each week to check blood cell count for infections. i had some nausea and vomiting but they were associated with smell. my sense of smell seemed to really increase and things like my wifes perfume and strong odors like cleaning supplies were the worst. i puked in the isle of home depot one day because of some orange scented floor cleaner someone had spilled. generally the nausea started (if i had it) about 2-3 hours after treatment. my neices and nephews got a real kick out of all the sharpie marks on my stomach. they just couldnt figure out why i could do it and they couldn't without getting in trouble!!! i real laugh!! just take it day to day and things will be better soon. best of luck, brian.

**Havok** · 02-07-06, 08:14 AM

The info posted here all looks correct. You will have fatigue but i do beleive if you keep active that it will be less of an issue(dont let yourself just sit around the house)

When i did mine i did 4 weeks of radiation 5 days a week. I continued to work my normal work week while doing it. The dr. can perscribe some meds to help with the nausea that that will help(i only had to use them once) For the most part just eatinv something very slow helped me out.

Do get yourself some aloe or skin lotion and start to apply it to the area that you are getting beamed. You will get what looks like a sun burn in this area and i think if you use it before it shows up it might not be as bad. The worst for me is there were times i felt as my skin was "crawling" It would last for about 10 mins or so at night and was a pain in the but!

For the most part though it was not as bad as i thought it was going to be and something that im sure you will be able to handel.

**cts** · 02-10-06, 03:18 PM

Thanks for all the info.

I went to my trial run today and it wasn't too bad. The worst thing is the 20 lbs lead ball... errr... shield... whatever they call it.

I can't believe they can't come up with something easier to use than that stupid thing.

I start next Monday so hopefully all goes well.

**Ken A** · 02-10-06, 06:16 PM

I think absolute cure rates are the same for both surviellance or radiation in many stage one seminoma situations. This seems well documented.

If the probability for ultimate cure of testicular cancer is the same regardless of whether someone chooses surveillance or whether they choose radiation therapy after orchiotomy, then the decision may be for patients during the decision processs may be to focus heavily on the risk of secondary cancer probabilities down the road that occur as a result of radiation.

Given chance of recurrence for these stage one surveillance patients is in aggregate about 20%, the probability of developing secondary cancers would have to be 5X that of the probability of this risk resulting from choosing radiation therapy immediately after orechietomy. This is quite a high threshold.

In instances where tumor size is small, rete testes involvement does not exist and/or vascular invasion is not present case becomes more compelling as the surveillance reoccurrence rate is likely materially below the 20% cited for all stage one seminoma instances.

This certainly ignores the lifestyle issues with surveillance, the piece of mind components.

**Scott** · 02-10-06, 07:24 PM

Ken makes a very important point. The cure rate for stage I seminoma is about 99%, whether you choose surveillance (and stick with the program!) or radiation therapy. The recurrence rate is what differs. If you're on surveillance and have a recurrence, you get treated and, almost always, cured.

**Andy Leftgone** · 02-14-06, 04:37 AM

Hi CTS

Just catching up with all the threads.. I would just basically confirm what all the others have said - I had 15 doses, I did get sick very quickly but apparently that was quite rare, to put it bluntly I threw up about 2 hrs after the 1st dose, the next day I started mild anti sickness meds and that kept it all under control. My rad was concentrating on the abdominal lymph node so perhaps thats why i felt the effects more - if you do have a bit of a weak stomach perhaps it might be worth asking if you can have an anti sickness med before hand? I carried on working throughout, leaving early to get to the docs for 5.00pm each night, personally i couldn't do any working out while this was ongoing.. by the 3rd week I was feeling a bit knackered generally but by then the end is in sight so you are feeling better anyway.

Good luck
Andy

**ballsup** · 02-14-06, 07:23 AM

I had 4 weeks of radium and extra doses on the abdominal scar,I did have nausea but not to the point of actually throwing up. More like dry wretching at times.I was lucky in one way because I worked at the hospital so there was no travelling apart from my days off which were Monday and Tuesday( pissed me off going in on my days off )

Apart from losing all my chest hair which grew back no problem I had no skin worries apart from slight burning over the abdominal scar where I had the higher doses.
I did have a problem with diarrhoea for some days but this was quickly cured with medication.
Keep in mind I had this back in the very early 80's and treatments have come a long way since then.
Keep us informed on how you are going.
Cheers Paul

**cts** · 02-18-06, 03:31 PM

Well, 3 treatments down 7 to go. The machine was actually down 2 days this week so I didn't get the full 5 in. So far, the only thing I've really noticed is fatigue but I did come down with a terrible cold mid week so it might also be related to that.

So far, so good. I can't wait until this is all over. Thanks for the replies.

**huckchef** · 02-21-06, 07:22 AM

its great that things are underway and going smoothly!!!! are they doing blood work weekly to check white blood count? this would help prevent other complications like colds and flu, etc.. its kinda creapy when they close that door and no one wants to be around you..isnt it??!! i thought man what is this stuff like.......two foot lead door, all these shields and i'm the only one in here!!!!! glad your doing good...stay positive and god bless! brian

**Neandertal** · 02-23-06, 02:14 AM

Originally Posted by cts

Well, 3 treatments down 7 to go. The machine was actually down 2 days this week so I didn't get the full 5 in. So far, the only thing I've really noticed is fatigue but I did come down with a terrible cold mid week so it might also be related to that.

So far, so good. I can't wait until this is all over. Thanks for the replies.

I was going to recomend a probiotic supplement in addition to the glutamine you're already taking so as to prevent a cold, but looks like I read this too late. The probiotics have helped me considerably in getting my digestive tract back to relative strength. I managed to catch a nasty cold too immediately after the treatments ended. Perhaps megadosing Vit. C (>2grams) will help. Best of luck to you.

**cts** · 03-01-06, 02:38 PM

Well, I had my last treatment yesterday. I did notice the fatigue after the 1st couple of treatments and I thought I was going to make it all the way thru without anything else but I didnt.

This past Saturday I started getting stomach aches and it has gotten worse each day since. Today has been the worse. The doctor said it could go away in a few days or it could take weeks. I have a call into him now to see if there is some over-the-counter or prescription meds I can take.

Other than that all went well and I'm happy to be done.

Thanks for the replies.

**huckchef** · 03-02-06, 07:40 AM

glad to hear it!! stay positive and move forward in life. the next best thing is to keep all your scheduled appointments for follow-ups and dont miss them. these are very important as to keeping this thing suppressed!! best of luck and god bless!!

**aliasarchangel** · 03-24-06, 03:22 AM

Ok, My case is the same as the guy who started this thread. ( stage 1 seminoma, clean blood test and ct scans)...You guys were mentioning survaliance and radiation and why is he getting radiation?....well since my case is the same as his, Should I be getting radiation? or just be watchful?....radation won't harm me will it?...like on a long term basis?...like, theres no harm in getting radiontion is there?....What should I do?...I havent started radiation but on monday I do.

**Fish** · 03-24-06, 06:50 AM

Stage 1 Seminoma is probably the best and also most annoying diagnosis you can get, particularly if you have no elevation in tumor markers. You're never quite sure what treatment path to take. Fortunately all the paths lead to a cure in 99.9% of cases.

MY PERSONAL OPINION
Too many men are being needlessly irradiated.
Radiation is not risk free and can increase the chance of other cancers later in life.

So how do you decide what to do? There have been some factors ASSOCIATED with increased/decreased risk of spread at the time of the orchiectomy. If I remember correctly the factors are age, size of tumor, and presence of lymphatic/vascular invasion.

Risk of spread for seminoma is lower if:
age is greater than 35
tumor is less than 4cm in diameter
there is no lymphatic or vascular invasion.
(someone please correct me if I got these wrong)

Of course any combination of these factors could be present and make the decision very complicated.

In my case, I was 42, the tumor was 7-8mm (very small) and there was no lymphatic or vascular invasion. My blood tests and CT scans were normal.
I chose surveillence. If I have a recurrence, then I'll get radiation (or maybe chemo). But before I subjected my body to any treatment, I wanted to know that it was absolutely necessary.

Ultimatley it's your choice, and I know it's not an easy decision. Surveillence requires an absolute commitment to stick to your schedule for tests.

Best wishes, thoughts, and prayers,

Jim

**aliasarchangel** · 03-24-06, 08:30 AM

Your saying, the thing that is suppose to make this cancer go away, can accualy cause more cancer?...GREAT....I Don't wanna get radiation, but I feel like I need to, just in case.you know?.....I think I am just gonna do it. I know its a small chance that it can come back but...I wanna get this all over with, This stupid thing has sorta derailed my life. Nothing is going right. It's messed up alot o things..SO after these 3 weeks everything can be normal again...I'v been to the doctors in the past 2 months more then I have been in my whole life, 8 strangers have felt me up, my balls gone!, my friends abandoned me, I can't go back to school cus I missed too much of class so this whole semester was a waste, my balls gone!...The stress from all of this has gave me an ulcer which hurts like hell and I have to take 20 freggin pills a day...and now I have to take this stupid radation.....and my balls gone!......sorry for this rant everyone...and hijacking this thread.

**rjs** · 03-24-06, 09:40 AM

First of all, as stressful as all this is, in order to make the best decision for you then you have to relax a minute and think clearly. Obviously, your doctors have recommended the radiation course as the next step in your treatment plan. There are risks associated with any treatment path. If you go with surviellance then you could have a recurrence and the treatment of radiation (or chemo) at that time will be stronger than what you will recieve now. There is a slight risk of cancer from the radiation, but my doctors assured me that the risk is very low. It seems to me from your comments that you might find the survellience route too stressful since it will require a very regimented schedule of follow-ups and tests. While you still must get follow-ups after radiation for a few years, they are not as often as surveillence. I chose radiation because it gave me peace of mind that I was doing something and not waiting for something to happen. My follow-up schedule is now every 4 months for 2 years and CT scans twice a year. (I do get bloodwork and x-rays at every follow-up). 4-6 weeks after radiation I was feeling good and have since gotten my life "back to normal". The comments in the above posts are accurate. Seminoma - Stage 1 is the best diagnosis and the most annoying because you actually have to make some tough decisions. But the good news is that there is no wrong decision (the only wrong decision would be to do nothing and not show up for follow-ups). While each choice may eventually lead you down different paths, in the end, they usually all lead to a full cure. Hang in there, stay strong, and keep your head up as you move forward. This will soon be a distant memory.

**Scott** · 03-24-06, 09:59 PM

Originally Posted by aliasarchangel

...and my ball's gone!...

Well, you're in good company here with that problem!

**aliasarchangel** · 03-25-06, 04:25 AM

yeah I am just gonna get radiation....thank you guys, even thought I don't know you, I am glad I can talk to you all about this...your the only ones, so thank you.

**johnseed** · 03-25-06, 04:43 PM

Hello everyone,

Well, I chose surveillance and BLAMMO cancer came back in the form of a fast growing tumor, and then I needed chemo. Although it is not an easy call to make, I think those of you who are opting for radiation are doing the right thing as it is quite a bit easier than chemo, at least from what I read here.

Might also mention, since I am now 4 years out of chemo, that my 2 year old born after cancer is thriving and we just found out we are pregnant again, so chemo didn't tamper with my fertility.

JS