Decided on Radiation therapy

[RBSW1]

How did you feel when you were diagnosed. I feel depressed lots of anxiety . I am scared of the treatment. I just couldn't do the surgery. Having to do it local cant afford the cost of housing to go to moffitt here in Florida. How many used your local health care centers.

[Tall_Allen]

I had so much anxiety that I used psychotherapy -- it helped a lot. I also learned to practice Mindfulness, which I still use. I was treated locally at UCLA.

[RBSW1 in reply to Tall_Allen]

Thanks

[Murk]

Yeah finding out that you have PCa impacts you. I first reacted like you, then I moved to an attack philosophy. I wanted to know everything including all the next steps to resolution. I went through the process cranking up motivational hard rock!

When I was a kid I use to dive off this high dive at our local swimming pool into 12 ft. of water. I learned that if I dove tentatively, I often would do it poorly and felt the effects. So I started running out and doing the biggest ass swan dive possible and no longer had the mishaps of belly flops pain or when the effects of over compensating. I applied this lesson to attacking my PCa.

I would check out local resources and see if they have done thousands and have a great reputation. I not, look into AirBNB, Vrbo or others which have better pricing then hotels. Also the major faculties have or use local short term housing since many of their patients travel there for treatment.

[WisdomSeeking]

You wrote that you have

"Psa 5.12 Gleason 3+3=6 3+4=7 only 2 cores out of 13 cancers . Intermediate favorable."

Will you go to SBRT? It's only around 5 sessions instead of 20 or more (when IMRT or EBRT).

I think Tall_Allen also went to SBRT.

[T911]

Do not feel bad you can not use Moffitt. I personally had a very bad experience with them and there are also some threads here that echo the same. I will say here that they are very good at advertising that they are very good. You can message me for my details. They do offer discount or complimentery dormitory housing if you meet requirements and live over forty miles away. What part of Florida are you in? I had a great experience with Baptist Health and the Miami Cancer Institute. They are allied with MSK. Very happy with my RO and his team. Great facility and they offer all forms of radiation. University of FL hospitals in Miami and Jax are highly rated. Mayo in Jax is highly rated. I rented a 40' RV on an online booking site that was parked in some ones back yard. Great neighborhood. Stayed there for five weeks, Drove home on the weekends. Super experience for one quarter the price of a hotel room. MCI does have an on campus Hilton hotel with special rates for patients but was too expensive for me during the tourist season. Online booking of long term rentals for RVs, Boats, Condos, Pool Houses, Tiny Houses and other alternate housing is extremely affordable.

[RBSW1 in reply to T911]

I live in melbourne fl . Space coast. My emai is [e-mail] . Would like to hear about your experience.

[CarverD]

Diagnosed 4 days before Christmas 2019 left me feeling shell shocked for ~2 weeks. Then I got on the computer and started 9 months of research before deciding on HDRB as a treatment modality. I couldn't/wouldn't do this locally so opted to drive 3 hours each way as an out patient at Wilmot Cancer Center (UR medicine) in October 2020. Here I am 4 years later and am driving 3.5 hours to Roswell Park Cancer Institute in Buffalo, NY as it appears based on PSA that my cancer is back. Scheduled for a PSMA PET and MRI end of March. Do what you can to get the best treatment available.

[RBSW1 in reply to CarverD]

Thanks

[drzaius]

I also had radiation and was very anxious and had therapy also. I also tried to give up the control and trust God more than I ever did. It’s all about the unknown but as time goes by you start to adjust to a new way of looking at things. You also feel vulnerable in a way that you never did before. In the end though it’s a growth opportunity, in retrospect.

[drzaius]

oh, by the way I did it locally in North Carolina. Key is to make sure they have a latest machine and your RO is experienced and you trust him.

[RBSW1 in reply to drzaius]

Thanks

[KenJamgo]

First off by choosing not to do RP you’re choosing a course of action and in control not the doctors. Next step is focus on your likely possibility of success not failure. You probably have more likelihood of serious injury in a car accident on the way to radiation than the treatment itself. Radiation sucks, all of this is f’d up but it’s not as bad as the alternative and for some it’s not to hard with minimal side effects so hopefully it will be that way in your case. Anxiety and stress quite possibly ia the driving force as to why a lot of us are here on this forum. So it’s understandable you have reservations but from experience like Mark’s comment prior you have to get the courage to just jump in “Swan” dive head first into this and trust yourself, then docs, family, friends, and probably last all of us on these forums haha. You can do it! The truth is that first session going in you think “how’d it all come to this?” And “how the F am I going to get through another seven weeks daily of this GD barbaric, insanely invasive monstrous machine blasting and burning away at some invisible material inside of my body that wants to destroy itself when it destroys me?” But after two or three days of it you realize all of the dedicated people involved from technicians and nurses and your oncologist and the scientists who created these machines are there in place for you and have your back. They will.help make it go smoothly and a success more than likely. There’s plenty of water in the pool you’re diving into -plus some lifeguards watching so you’ll be in good hands. You may also get an applause for good performance. My center surprised me upon completion a “certificate “ that resembles a Kindergarten spelling bee award signed by the staff/docs etc. and it looks cheesy but brought tears to my eyes because I realized like you there was a ton of anxiety all along. That five cent piece of paper is a treasure to me now and forever; plus it had a “Gold Star” sticker on it! Go for it! You can and will get way beyond your radiation treatment and for years looking back at it as one of the many challenges in life and it won’t be the worst. If it does the job as intended it might very well be the best challenge.

Ken

[RBSW1 in reply to KenJamgo]

Thank you

[tarhoosier]

For me the first order of business was to decide that my treatment decision meant No Regret. A business decision, in effect. Only forward. Deal with only The Now.

I used Zoloft to manage the anxiety and it was good until the anxiety subsided and some time passed. Help abounds.

[paladin7 in reply to tarhoosier]

Yes, it is so important to go all-in on a treatment plan without any misgivings. My treatment plan was best for me. Unfortunately, I have had serious side-effects. But I knew that was a possibility. I'm living with those side-effects today, and every day. But I know I picked the right treatment and rolled the dice. Came up snake-eyes. But no regrets.

[dieselbeagle]

Lots of great insight here. Best of luck to you and know that there are a lot of folks in your shoes unfortunately. Myself included. Diagnosed a few months ago, stage 4a. shortly after my 69th birthday. Gleason score of 8. Felt like getting hit on the back of the head with a 2x4. Been an emotional roller coaster. Started Casodex a week ago, then scheduled for Lupron shot in about a week followed by 2 years of Zytiga. Radiation supposed to happen in April. Not sure if this is the right course of treatment but putting trust in doctors for the most part. Scariest part for me is the radiation so anyone's insight on that front is helpful. Also decided to take charge as best I can. Hiking 4 times a week, doing some weight lifting at the gym a few days a week. The fact that I was in good health prior to this made it harder to take. Do what you can to take charge of your health, both physically and mentally outside of what the medical professionals say to do. Therapy can help.

[Murk in reply to dieselbeagle]

dieselbeagle, I had 5 days for 5 week of salvage radiation. After my first rads blast, I asked them if they really did anyting?? Even after the full treatment I barley noticed anything incluing side effects. Just keep active, exercise lots and keep a positive mindset.

[dieselbeagle in reply to Murk]

thanks Murk. gtk that not everyone has side effects from radiation. they are proposing 20 sessions after I start the Zytiga and after they insert the gold rods, I guess to better pinpoint the radiation. I keep reading about the whole full bladder, empty rectum thing. that doesn't seem very reassuring, that if you don't do that every day, they could be shooting radiation at healthy cells because they can't better pinpoint things

[Murk in reply to dieselbeagle]

That is true. I always scheduled visits later morning or early afternoon. This allowed me to have my bowel cleared. Then I would drink lots of water before I walked into the building allowing my bladder to be full. If they're delayed, then it is discomforting sitting around with legs crossed but manageable.

[WilsonPickett]

Hi there RBSW,

Sorry to hear about your diagnosis, welcome to the club. I’m with you. I found the thought of surgery much more frightening than radiation. And considering that the research confirmed that the success rate was the same for radiation as it was for surgery, radiation seemed a lot less worrisome.

Personally, I found the biopsy more uncomfortable than the radiation. The worst thing that I felt from the radiation was that I felt I was burnt down there. I wouldn’t even say that it was painful, just uncomfortable, and of course, the whole thing was a nuisance, but the universe never asked me whether I wanted it in the first place. Discomfort went away after not too much time. I’ve been able to get on with my life with very minor downsides, considering.

I am facing a reoccurrence which will likely require more radiation and maybe some hormone therapy. But any doctor that gives you 100% guarantee that you’re gonna be cured is a liar.

The one thing I would tell you is don’t fool around with little hospitals. Find the best cancer care in the area even if you have to travel. Do you live close to a city like Miami?

For referrals in your area check in with Tall Alan on this website. He’s an invaluable resource.

Best of luck to you

[Mgtd]

Your question was how many used a local place for radiation rather than travel.

I had it done locally. Piece of cake. Results excellent. Saved a huge amount of money and time and aftercare was really easy on me, my wife and my pocket.

I ski with my ROs husband. As our Chamber of Commerce says “ support your local community.” Seriously the care was amazing.

[RBSW1 in reply to Mgtd]

Thank you

[addicted2cycling in reply to RBSW1]

A different type of reply --

July 2014 my PCP did her DRE and TOLD ME about the LUMP in the right half of the prostate and said GET TO A UROLOGIST. Too much LIFE INTERFERENCE -- Ironman Triathlon, Marathons, Half Marathons, 5Ks, 100 mile overnight bike rides to 200+ miles a day rides. FINALLY went to Urologist in APRIL 2015 and knew his biopsy would show PCa. I researched before getting results and EXPECTED metastasized PCa so when told no Mets. but 5+4 I was prepared and had immediate Orchiectomy. Had an outside the box physician recommended by a friend, his biopsy was 5+5, had a Hemi Cryoablation + his experimental IMMUNOTHERAPY injection. Then began testosterone injections on and off. Off right now because 3+3 cores in left half of prostate that remains, PSA is 0.02 and LIFE IS GOOD. Just a different approach that is NOT SOC but has worked for me.

Good LUCK

[PrettyUnhappyGuy]

You're feeling exactly how a lot of us feel. There's always the "be a WARRIOR" mentality out there but I think that just masks fear. Prostate cancer wasn't even on my radar. No one in my family EVER had ANY kind of cancer.

Mine was caught by a very diligent general practitioner who sent me to a good urologist. I chose radiation also and had to do some ADT because I was 4+3.

Within the first month, I alternated between anger and planning to jump in front of the subway. As ADT took away more and more from me (memory, muscles, sexuality) my anger grew and grew, interspersed with such sadness that I had days where I didn't leave the house. I pushed away EVERY person I knew and just wanted to be alone. My brother didn't, though, and would call and text me endlessly until I talked to him just to get rid of him. He made me promise to see a therapist at least once.

I went to the therapist thinking it would be pointless and they'd either just say "how do you feel about that" or just give me sympathy and tell me to "have a positive attitude" and I told them this and they said "when you're done being angry at all the people in your life, the universe, and at yourself then we can work together to figure out a plan"). It was disarming but kind of the kick in the pants I needed.

TLDR: In short, you're grieving and that's normal.

[RBSW1 in reply to PrettyUnhappyGuy]

Thank you

[Stellabell]

I went far afield for my second and third opinion about treatment options (primarily Duke University medical center) but opted to stay local for my IMRT treatments after being assured about the equipment and expertise of the local facility. Much easier, less travel. This was 5 years ago and the standard at the time was 40 treatment sessions for someone like me in the high risk category.

[cancerfox]

Being depressed and anxious is perfectly normal when first diagnosed with PC. It will probably diminish as you proceed with treatment. I was treated at a local urology center in 2021 , not at one of the big name cancer centers, and so far, so good. 🦊

[Don717]

Use your fear as an asset!! Channel it into finding the answers...as you've done. Fear can be a positive as well. It makes us cautious so we can think about things instead of having knee-jerk reactions. You are normal to have this feeling. Lots of great local facilities out there as well. Again, use your anxiety as a motivator and seek out the best care within your insurance/region by looking at reviews and drxs that specialize in PC. For example, when I decided on RP I found a surgeon within my network that does almost all of the practices surgeries. He specializes in PC mainly and the uro's/OC's within his network refer patients to him due to his success rate. You can do the same by asking questions within your network and finding info on the internet about your care group. Don't be scared...be thankful you have a situation that is curable! Good luck to you sir. Chin up, time to move forward!!

[RBSW1 in reply to Don717]

Thank you