Radiation Treatment Questions

[41FromMI]

I've mulled the decision for Surveillance or RT, and after long consideration I've changed my decision from Surveillance to RT. For a number of reasons.
Anyhow, those of you who have had a course of RT, I have some questions. I had a long meeting with my RT Oncologist. He basically told me everything I had already read here and at the other information sites. His opinion was that although Surveillance was a legitimate option, it was a newer concept that did not have widespread acceptance as a standard of care..yet. And based on what I've read his point of view has merit.
It is always a hedge against the odds no matter what route you take I guess. I decided I wanted to get this behind me as quickly and as decidedly as I could.

The questions. What is the "dose" that those of you who had RT recieved? My MD stated I would recieve a dose of 2000 over the course of the treatment, getting about 180 per dose. If I did not tolerate this well, he would reduce it to 150. What is this dose? Units of Radiation? Is this amount comparable to what others have recieved? And what about the area irradiated. He indicates that I will recieve a broad field over the abdomen, obviously to target the abdominal lymph nodes. Before this I had always thought radiation treatment was pinpoint, targeting tumors specifically. But I've come to understand that in our case, a broad field is needed to cover all seen and unseen lymph nodes in the abdomen, but this exposes us to more radiation over a larger area, bringing with it possible unhealthy side effects. I'm no fan of being at higher risk of secondary cancers.
Also, my MD is going to irradiate the abdomen only. I've noticed that at www.nccn.org the clinical practice guidelines in oncology for testicular cancer have updated their RT recommendation for Seminoma to include para-aortic and ipsilateral illac nodes. Has anyone with Seminoma had these areas included in thier RT? I had always thought it was the abdominal nodes only for stage I.

I have an initial pre RT appt on Monday, I'll have another CT and tatooing at that time. Any comments would be appreciated.

Mike

[rjs]

Mike -

I also opted for the RT. The information you have seems to be right and the dosages are pretty standard. How many treatments will you have? In the end, I understand it is the total amount and not necessarily individual dosages that are consistent.

My field was focused on the abdomen. A square field area that targeted the lymph nodes. They will hit you once from the front and then once from the back. The treatment will be relatively short. You may want to consider using the "clam shell" shield to protect your remaining testicle from any scatter radiation. Not sure what your family situation is, but this can be a good precaution from any side effects with infertility. Doctors will tell you the odds are low, but if you already are opting to play safe then you might as well take all the precautions. At least talk to your doctor and techs about it. The abdomen field is fairly standard now for Stage 1 patients with no invasion. Using the "dog leg" field really has no major benefits based on recent studies.

Good luck next week. Hang in there and take it easy. This will soon pass.

[41FromMI]

Thanks for the reply. He said I would need about 11 treatments. Shooting for 2000 units or whatever over 11 or so treatments, I may get more if I'm too sensitive and need the dose lowered.

[rjs]

I had 17 treatment days. So I am guessing that my individual dosage was slightly lower than yours. It seems I recall the doctor indicating the amount on your daily treatment can vary. My side effects were constant nausea and heavy fatigue. I will be interested to hear how the slighltly different daily dosage affects you.

Again, it will be fine. Good luck.

[QuantumSheep]

Hi there Mike! Congrats on selecting a course of treatment, I know the decision can be a very difficult one, I myself bounced between Surveillance and RT about, oh, 3 million times a day.

Now it's been almost 2 months since my last dosage (woohoo). I was originally slated for 17 treatments as well touching on the para-aortic plus "dogleg" pelvic field. Then halfway through the treatments the number was reduced to 14 treatments (which was like the best news I could ever have heard).

I got sick after my very 2nd treatment but that was the only time. I had my treatments in the late afternoons which meant that I basically crashed every evening but started each day feeling not-so-bad. (Although, with each passing day, I would begin it a little more tired than the day before). I wasn't constantly nauseous, but I definitely had a constant low-level queasiness which took a few weeks to dissipate. And the waiting room of the treatment center always had this hazelnut-flavored coffee and to this day I can't even think of it or the queasy memories come flooding back!! Overall I would say it was pretty flu-like: Headaches, aching muscles, and queasiness.

I had heard all sorts of advice on what foods to avoid and what would make me sick and what wouldn't etc. but in the end, I just ate when I was able to and for the most part, I ate the same things. I kept a few of those "Ensure" meal-replacement drinks in the fridge for the times when I knew I had to eat something but didn't feel like eating anything.

Good luck with your treatment and keep us posted ....

[Sans rt1]

I think the pattern, para-aortic vs. dogleg depends on your staging, meaning the size and whether you had vascular and lymphatic invasion - as well as the preference of your doctors. I had para-aortic, over 15 days. I was queasy and tired the entire time, but never actually got sick and still was functional - took it easy with naps and only worked 7 hour days. I was still feeling tired for about 4 to 6 weeks after ending treatment, and probably about 2 months after ending treatment was when I felt close to normal. All in all it was not bad. I am now 6 months post RT, and feel great.

All that said, you may have read some of my posts about my wierd side-effect from RT - which I have been told is extremely rare. About 3 months after treatment, I started having lower back discomfort and became very scared I was getting a recurrence. Luckily, a thorough follow-up check up with additional CT imaging showed nothing was there. So, after my oncologist consulted with several experts, it was decided that I have developed some internal adhesions from scar tissue that is causing these sensations. It is not pain, just a tightness and feeling of pressure in my lower back. Definitely something I can live with (now that I know it is not a recurrence). Hopefully it will get better over time. I am doing exercises to strengthen my core and that has helped a little, but I will probably start some targeted physical therapy after the holidays.

So, my advice is: Take care of yourself through and after RT. Eat well, take naps, drink plenty of fluids as your body is healing. Try to stay active - don't become a lump - even if you are tired, take walks, do stretches light exercises to keep everything moving. I tried to stay active, but really did not do as much as I had intended. Of course hind sight is always 20-20, but I really think if I had kept a little more active during RT and after, I might not have developed the adhesions (However, my doctor tells me that he really can't say if it would have helped or not).

Good luck to you. You will do fine. It will be over before you know it.

[41FromMI]

Upon reading more about RT Doses, it seems the average is 2500 - 3000 rads. Has anyone recieved less? My Oncologist wants to shoot for 2000, he seems pretty confident it is appropriate for me.

[cbuysse]

Yeah sounds like your field of radiation is pretty standard. I as well had the "dogleg" radiation field. I was given 1500rads over 16 treatments for a total of 24gy. My rad oncologist was the best he had been practicing for 35 years and was great with explaining everything in detail to me. He explained that he used to give 2000rads per day with testicular but had lowered it to 1500 about 5 years ago because patients tolerate it much better in lower doses over a few more treatments. By tolerate he meant far fewer side effects like nausea, diarrhea etc.
So my only advice would be if you feel as though you are not tolerating the treatments well just have him back it off to 1500 per day and it will just take you a few more days to reach your total dose.

Good luck

[cbuysse]

sorry just went back to your original post and noticed he said he would back it up to 1500 if you did not take well to 2000. You asked in your first post if 20gy which is what he has you scheduled for is enough. There was a article published recently showing that 20gy was just as effective as the 25gy that is normally given. As recently as a few years ago the standard was 30gy and they are now realizing that they can reach the same results with lower dosage like the 20gy you are being prescribed. I have attached a link to that article.

http://www.urotoday.com/39/browse_categories/testicular_cancer/adjuvant_radiotherapy_dose_for_stage_i_seminoma_medical_research_councileortc_randomized_trial_shows_decreased_morbidity_and_equal_efficacy_for_20_gy_compared_with_30gy.html