Newly Diagnosed...What to expect with radiation and hormone therapy?

IceCube,

Welcome to the site and sorry you have to be here. This site is great place to get support and compassion and to get and share information. Less so to get a direct advice, as most of us are not doctors and shy away from making recommendations.

I had chemo, surgery, radiation and hormone treatments so I can share some personal experiences, but remember that everyone is different and how people tolerate treatments as well as success of those differ from person to person.

Radiation was probably the least unpleasant of my treatments. The only side effects I had was fatigue towards the end and the occasional urgency to urinate. With radiation ED does not usually become a problem until months after (up to two years), but I already had problems in this department after a surgery a year prior.

I then had a year of hormone treatments and had the usual SE - loss of libido, low energy, weight gain, hot flushes, depression. I am now a year+ from HT and feel great. Energy is back, I lost weight, gained muscle, and have normal sex life (with help from little blue pill).

But before you jump into treatment decisions please seek second (and third and fourth) opinions until you are comfortable that you understand all the options, spoken to at least these docs specializing in PCa: urologist (aka surgeon), radiologist, and oncologist. If you are anywhere near a well known PCa treatment centers like MD Anderson, Hopkins, Sloan Kettering, Dana Farber, etc, talk to specialists there. If not, look for docs with a lot of experience in PCa.

Read books and research - some recomended reading can be found in the sticky threads on this forum.

Your stats do not suggest an aggressive form of cancer, so you can afford to take weeks if not months to make a decision. Take your time... and best of luck.

I am sure others will follow to welcome you and to provide their view points.

Greg.

Welcome,

Sorry you need to be here. You definitely need to get a good 2nd and perhaps 3rd opinion before embarking on a primary treatment. I would advise seeing a good quality onclogist, to get a more neutral opinion.

Please research as much as you can, as you are about to make a very important and complex medical decision.

My best to you,

David in SC

Take a breath, take your time, learn all you can, ask questions, explore all your options and find the best doctors you can find. Don't rush into any treatment.

Start a journal and take someone along with you to take notes. Having all your information one place will be a help to you.

I had radiation through the use of seeds. You can read what I went through by clicking on the link on my signature.

Good luck to you and as 142 said, the door is always open here.

Ice,

as others have said, be sure to get a second/third opinion. Looking at your numbers, you would seem to be a candidate for other options.

I have chosen neo-adjuvant HT with RT as my primary treatment.
I am half way through my 45 session IGRT (Calyso). I can personally report no side-effects from RT at this time.
Common immediate SE are, burning, urgency, frequecy with urination. Bowel issues with diarrhea, constipation. Fatigue.

I am 5 months into my HT, (lupron/abiraterone/prednisone). I have mild hot flashes, which I tolerate without additional medicine. I have zero libido, but I am still able to have an erection. With daily exercise I have avoided other HT side-effects like weight-gain, moodiness, fatigue.

As far as long term SE of RT, there are small possibilities for incontinence, sexual function, and bowel/rectum issues. These SE can appear several years after RT.

Good-luck with your decision, we have all been there and I know it is tough to wade through the options.

-Winter

Ice,
As everyone suggesed, get second opinions, especially on your biopsy slides. As to your question:
HT significantly improves radiation effectiveness according to many studies. I don't know how long your doctor is recommending it, but for a G6 or G7, 6 months should be more than sufficient.
I would also ask about just doing Casodex only instead of Lupron as it is just as effective for your purposes and has 20% of the side effects. The side effects of HT are loss of libido, you can get an errection, but just don't want to. Hot flashes and breast enlargment which can be eased by meds. All side effects go away in a few months. The main issues of HT such as bone loss and cardiac issues won't apply for a short course of 6 months.
The side effects of radiation can include impotance, 35%, bowel issues, 5%, incontinence is very rare.
I would also investigate brachytherapy as it is much easier, less costly and bowel issues are rare.
I had both brachy and IMRT (external radiation) along with a short course of Casodex. I have no permanent side effects. Side effects from Brachy disappeared in 4 weeks (urinary frequency and urgency), radiation had no effects at all, and Ht side effects disappeared in 2 months after stopping.
Hope this answers all you questions.
All short term side effects will not effect any of your normal daily activities and are very tolorable. The long term side effects are variable to each individual. It is important to get a radiologist that has done at least 250 procedures as this will reduce any effects you may have.
JohnT
JohnT

Ice, welcome to HW, sorry you have to join us. Second (and third or more )opinions are the next order of business. Investigate all options, then make a studied, informed decision. Good luck, stay with us during your journey.

Ice, good advice here, not much to add, but this: with surgery as your first course, if there is a recurrence down the road, you can opt for radiation. Conversely, if you opt for radiation as your first course, surgery (prostatectomy) down the road is not an option, because the radiation messes up the tissue to the point that it cannot typically be safely removed. When I was first diagnosed, I assumed that you would start with the mild treatments and then go progressively more aggressive, but this is not the way with prostate cancer.

I am not necessarily advocating for surgery in your case - just want you to be informed about what the choices mean.

Some research that I have seen declares that testosterone levels below 200 while receiving radiation makes it more effective. In my case, I had naturally low T levels (100-200 range, 500 being normal) and so I probably got the benefit without needing the HT. I don't recall whether the research applied to first treatment or only SRT.
Jeff

At 48, surgery MIGHT be a better option than radiation..If you go with radiation then investigate the combination of both beam and seeds which produces results equal to surgery...

with that volume of cancer there's a very good chance that the cancer has escaped the capsule.  so even if you opted for surgery you probably will need radiation too.  most of the guys who had problems with radiation received radiation as a salvage therapy.  once the prostate (target) has been removed the radiation can cause much more collateral damage.

while we are assuming i would caution you to be too laid back because of the G6....there's a 40% chance that you have a higher grade of cancer.  take a look at the volume of cancer and imagine it's G7.   or G8. 

i'd want to hit that beast with everything in the war chest, ASAP, right from the get go and in this case i would agree with Fairwind about combination treatment (like the treatment i had).  sure i had plenty of SEs but i've never been incontinent and the ED i suffer with is easily corrected with 10 mgs of cialis every other day.

good luck to you!

ed