Treatment

[tlh]

I think I will also be reassured by the lower risk. It's just something I want to get done with and move on. I think that would be more difficult with a 20% chance of recurrence as opposed to a 2% (or less depending on the expert or article) chance.

[Sans rt1]

Sounds like you've made your decision. If so, relax knowing it is reasonable. Take care of yourself during the treatments and keep us informed. Hopefully you will have minimal effects from it.

I am glad you have a supportive wife to help you through this. Through my diagnosis, surgery, recovery, and treatment - my wife was amazing too. I think the whole ordeal actually brought us a lot closer together.

[tlh]

Thanks everyone for the advice and support. Although surveillance is a good option right now, I will have more peace of mind with the RT therapy. I go in next Tuesday for the marking and dry run and told I will start Thursday. I will keep you updated on the progress.

[Scott]

It's proven treatment, and you can feel good about your choice.

[Fish]

Best wishes for a smooth course of RT. It'll be over before you know it.

[tlh]

Some people that have gone through RT for one reason or another have told me not to eat the foods that I really like during the treatment. They have said that they will taste very different and even after the RT is done you will no longer have the stomache for them. Anyone else heard of this or have similar experiences?

[dadmo]

tlh:
When my son was on chemo he drank gallons of country time lemonade. When he drinks it now he almost gags. The taste reminds him of being sick.

[huckchef]

i didn't have anything change in what i had cravings before or after. i did though have certain foods that would up-set the stomach that didn't before. they can give you dietary guidelines if you ask for them. but the normal "healthy" foods should be good(fruit, whole grains, veggies, etc...)!

the most increased sense i had was smell. it increased dramatically. many things, like perfumes and household cleaners would make me call Buicks...... if you know what i mean!!

[Sans rt1]

I think everyone is different, but my nausea was not so severe that I had lasting aversions to any foods or drink. There were things that I craved or could not stand, but by a few weeks after finishing RT, my taste and food likes are back to normal.

During my RT, certain foods did not taste good to me - things like sandwiches or bread just turned me off - and forget coffee or wine. I really craved rich and spicy foods - things like heavy italian or mexican food. I let myself eat these things more than I usually would but tried to maintain a balance of fruits and vegetables.

I have no lasting aversions - but do report that my consumption of breads, coffee and wine is still far below my pre-RT levels - because I found I could live with less of these and think it is better for me long-term.

So, hopefully your nausea will be mild and your food tastes will be manageable. I think your body will let you know what it wants. If you need to, take the nausea medications (I never did). Drink lots of fluids as your body will be working hard to heal itself and you don't want to get dehydrated. Try to excercise regularly, but don't overdo.

[tlh]

question about radiation zone

I went to get my new tattoos today! During this visit I asked my Onc what areas he was looking at radiating. He told me the para-aortic region and down the right lower pelvis (right side orchietomy) kind of like an "L" shape. Does this sound about right? I go for the "dry run" tomorrow so if anyone thinks there are any other questions I should ask, please let me know. Thanks.

[Sans rt1]

That sounds like the dogleg. That may not be the current state of the practice, but is still done. Mine was the paraaortic only, just a rectangle from maybe about an 1-1/2 inches below the sternum to just below the navel, and is about 3 inches to 3-1/2-inches wide (a guess as I did not strip to measure it) with one side straight and the other kind of bowed. What I was told was that he designed this based on my body (the CT scans they did) layout to hit the lymph nodes and avoid major organs where possible.

My radation oncologist explained to me (and it was supported by the journal articles I have read since then) that the practice recently had been modified to omit the L part of the dogleg as most of reoccurences occur in the para-aoric lymph nodes. The benefits of this is that it reduces the radiation exposure overall to reduce the likelihood of future cancer (tumors and leukemia) from the radiation, and avoids the bladder and the prostate, so radiation is retained an option if needed for these areas in the future.

From my reading, the drawback not doing the dogleg is that the pelvic lymph nodes (the ones on the side of your I/O) are ommitted from treatment, and that a percentage (some studies have it in the 25-30%) of future reoccurences will occur in the pelvic nodes, not the paraaortic nodes. Hence, my followup will need to include periodic pelvic CT scans in addition to the chest X-rays because these nodes were ommitted.

I don't think your treatment is wrong, but many are doing it differently - it was the successful and proven method for years. I think some oncologists may not feel the para aortic only RT is fully proven yet. My radiation oncologist told me that it was the best option overall considering risks and success. I did not know about this site at the time and did not do a lot of research before making my decision, so I did not question any of this. You might want to question your radiation oncologist as to why he chose the dogleg pattern and how it might affect your chances for future radiation treatment to bladder or prostate in the future. There are risks and benefit to both patterns, but you should probably understand why he choose this for you.

[Sans rt1]

tlh - -

When do you start your RT?

I just had my first follow-up with the oncologist post RT, and got the expected "all clear".

After all of the agonizing I had done about the decision on treatment alternatives, my oncologist told me that he was glad I had chosen the RT alternative as it was the most reasonable choice for me all things considered. Boy, this is not how I remember our initial consultation (I wish he had made a strong recommendation as it would have saved me a lot of stress - but at least I did enough research to thoroughly understand everything for myself. )

We discussed his recommendations for my future post-RT follow-up. I was glad that it will include a yearly pelvic CT (because my RT was para-aortic only so the pelvic lymph nodes did not get zapped) in addition to the chest X-ray and blood work every 3 months for the first few years.

Anyway, keep us informed on how your RT goes. Hopefully you will have minimal side effects and bounce back quickly.

[tlh]

I was supposed to start tomorrow, but they wanted to wait until Monday so they didn't just go 2 days and then take 2 days off. We haven't really talked about post-RT treatment and follow-up. I'm not sure what the standard protocol for follow-up is so if you have any advice or suggestions I would be happy to hear them.

I'm glad to hear that your Oncologist said that RT was the most reasonable option. It makes me feel easier about my decision.

[Sans rt1]

That was probably a good suggestion - Waiting two days will not have any affect on your treatment.

Mine was just that way, started on a Thursday so 2 days with 2 days off for the weekend. It did kind of affect one extra weekend, but it worked great since my wife had planned a trip with friends to a cabin in the mountains for a long weekend months before my diagnosis, the schedule worked perfectly with my RT ending the day we were to leave (just stopped by on the way out of town for my last treatment - and it was good for her as she was able to see the facility and the others I had sat in the waiting room with each day - and the little ceremony they had when they gave me my "RT completion" certificate). So, eventhough I was a little tired and feeling a bit queasy, we were able to treat that weekend as a bit of a celebration.

You can think about follow-up later, enjoy your weekend.

[tlh]

Starting RT

OK, so I'm starting RT tomorrow and I'm more than a little nervous. How long (hours, days, weeks) does is take to start feeling the effects of the radiation? Also, they gave me a prescription for compazine for nausea. Should I take this before I start or wait until I need it? I realize that's its only 15 days of low dose radiation and that's not much compared to what many on this site have gone through, however, I've never had to do anything like this and I'm getting more nervous as tomorrow draws near. Thanks for listening and any info.