Perhaps a new perspective of treatment

[ulfhbg]

Hi !

Ulf from Sweden and new in this forum but after reading all incredible posts and seeing all fantastic members stories I felt, why not try to give you my story on my journey so far on the ’ prostate cancer train’

Regards Ulf

[Mike1971]

Hi Ulf,

Thank you for posting. Seems you have been through a lot of treatments and have a very positive outcome - well done!

I’m in Sweden as well and have looked into Docrates treatments in Finland - I might contact them too if my oncoming medications don’t turn out to be effective.

[ulfhbg in reply to Mike1971]

Hi Mike!

Looks like you have had the same and actually interesting to see your treatments so far because I suppose you have been treated in Sweden and it seems that you have been able to lovade a doctor that actually can think outside the operation track.

Yes, very professional and of course no waiting (private specilized clinic so they need to deliver for the money they want…)

Anyway, so far so good but, this cancer gives you the run for your life…

Best of luck to you and I Will of course check up on you, fellow country man

Regards Ulf

[Justfor_]

User Brysonal from the UK had a very similar treatment in Finland and the UK. He is ahead of you, so have a look at his bio.

[ulfhbg in reply to Justfor_]

Hi !

Thanks for the information Justfor_

Just by putting out a post you can get good heads up to look into so, a fantastic forum with fantastic members. It’s so good to be part of it and be part of a community of people with the same goal; fight the ugly Prostate cancer beast.

Thanks and BR

Ulf

[dude69]

Hi Ulf, eric from Sweden Lund. Urologist in Malmö and radiation therapy was done in Lund. Met with a surgeon and oncologist in Malmö at same time when they discussed my treatment plan. I had gleason 9 localized prostate cancer. THey both agreed due to positioning of tumor if I would have had the prostate removed permanent impotence probably then with incontinence. They said prostatectomy or radiation/brachy would likely give same result so I chose radiation/brachy/hormone therapy. Found by slump when I had a colonoscopy to check my stomache since i had some blood in my stools. Otherwise no symptoms. Excercise diligently and a runner before and after. Colonoscopy was clear but they felt a tumor and my journey began. As my profile shows 25 radiation treatments followed by Brachy. Still on hormone therapy with Pamorelin shots every 6 months. PSA <0.10 as of a test a few weeks ago. Reading your profile you had Gleason 7 same kind of treatment as me but then you had a mestatic cancer and went to Finland for further treatment. Where were you getting treated in Sweden? For me so far so good...

[ulfhbg in reply to dude69]

Hi dude69

I’m from Helsingborg so same region as you. I had initial contact with URO in Helsingborg and then had a brief contact with ONCO in Lund. Because of my initial diagnos they (Lund) would only offer external radiation therapy and the only time they complemented with Brachy where if you had more advanced stages. But never Brachy mono therapy

I did my own research and found out that Örebro did 2 x HDR Brachy as mono therapy so this is was my first stop on my cancer treatment rodeo, then Bicalutamide and finally Finland. Next stop, i don’t know and time will tell.

Nice to hear that everything is under control so far and lets hope it stays way

Best regards Ulf

[dude69 in reply to ulfhbg]

Thanks for response Ulf. In my profile you can see: Curative radiotherapy 50 Gy/25 fractions to the prostate gland and vesicles bilaterally combined with 1 brachytherapy treatment of 14.5 Gy. In addition, prophylactic mammillary irradiation. So Lund did not offer you the brachy? They put me out for 4 hours to do the brachy on me. An experience and stayed at patient hotel for a night with a catheter for a day. walked home the next day...

[ulfhbg in reply to dude69]

Hi !

Yes, saw that and no, I was a T1C with gleason 3+4 so no brachtherapy boost what so ever. Only external beam.

In Örebro they used local anesthesia both the times ( eq no lights out but not feeling half your body).

Actually my MO theorised that even if you have local anesthesia and don’t feel there are studies that have shown that you perhaps do some body position changes that may impact the prostate positioning which may affect the target area. His words and anyway; future will tell.

You seem to do very well and it’s always good to hear success stories.

// Ulf

[dude69 in reply to ulfhbg]

thanks ulf...they offered a brachy boost to me since Gleason 9 but localized. they considered it curative care and it seems now i am cured..doc told me last time stats show i will die of something else with the results so far. but who the hell every knows..cancer sticks with you...all of my best to you...

[ulfhbg in reply to dude69]

Hi

I understand from your bio that you are only planned for 1 year of ADT. When is that finished and what adt have you been on?

Same to you my friend

[Yzinger]

Hello Ulf - not much to add from disease standpoint except hope goes well for you.

I had to reply as years ago I was a big fan of hockey player Ulf Samuelsson.

[ulfhbg in reply to Yzinger]

Hi !

Saw your profile and first of all, thanks and time will tell.

Second, from reading lots of posts from fantastic members I have seen incredible results, fantastic curies, long time remissions and etc. So, fight one and take comfort that there are lots of people in this forum that shares knowledge and comfort on your journey my friend <3

best regards Ulf

[ulfhbg in reply to ulfhbg]

Upps Yzinger

Did miss out on all of your posts and it seems that things are working out compared to Bio. Great and fantastic and hope for the best my friend.

// Ulf

[Yzinger]

Yes, its unfortunate that we are here - but my goodness, what a great group of members!

[j-o-h-n]

You've come to the right place..... keep posting..

Good Luck, Good Health and Good Humor.

j-o-h-n

[ulfhbg in reply to j-o-h-n]

Thanks John and I really think this forum and it’s members is fantastic. Lots of warriors

Time to start living between the PSA tests. We don’t seem to measure down to more then <0.1 as a standard in Sweden but after reading up here on this forum and knowing that there are more specific tests it puts more of a nervous twist regarding PSA tests

Anyway, thanks John

[Teacherdude72]

URO docs are surgeons and they think that is the ONLY successful option. They are so very wrong and actually hurt many men's QOL.Mine said operate, I then saw a Radiation Oncologist that gave the the actual stats that supported both equal given my G9 and local.

So it's a personal choice and never look back and second guess.

[ulfhbg in reply to Teacherdude72]

Hi !

So true for me as well. My totally private experience is that in Sweden URO and ONCO is not working optimal for patients best which means lots of extra energy, research and sometimes guessing what’s best.

My wife is also a cancer fighter, doing 10 years now since diagnosis. From day one here MO(s) have been on top of everything and she really trust the team around her.

But, true. Always look forward and make a active choice to live the best live you can live

[Scout4answers]

Glad to see you taking control of your PCa care.

This is a great place to share ideas and info.

Welcome.

[ulfhbg in reply to Scout4answers]

Hi

Thanks and from what I can read you really are trying to be on top of your cancer. Amazing !

Yes, i have noticed that and now I felt I wanted to have a more active part in this forum.

[Dadyrabbit]

So I am in the United (well maybe not so United these days) States. I am interested in the side affects from each of your treatments? Right now I have good quality of life and really don't relish the thought of side affects ranging from incontinence, loss of sexual function, etc. Do I really want to chance those side affects now or just wait and deal with the end of life side affects maybe 10 years or more down the road. Will have PSMA Pet Scan next week. That might help me decide. Good luck to you.

[ulfhbg]

Hi Daddyrabbit!

Nice to here from you and i suppose you mean any lasting side effects that may impact quality of life like you mention; incontinence, lack of sexual function etc.

Since I started my journey with treatments I have grown more tired both physically and psychologically and living with cancer diagnos have marked me mentally and I live much more in the present and less in the future. Was more of a half full glass and now more half empty type of guy.

But, let me try to recap lasting side effects:

- Brachytherapy: The main lasting side effect was almost total lack of ejaculation when having orgasm. The orgasm was totally normal and everything felt normal but, no ejaculation at all

- Lutetium-177: Not any bigger lasting side effects besides more tiredness

- VMAT / RapidArc: Sometimes i feel soreness when I pee. More bloating (probably more from Medication) and more stool and a little more constipated (also probably more from medication)

My medication; first Firmagon and now Orgovyx (the ADT) together with Abiraterone / Prednisolone has had the most effects with fatigue, mentally with more ups and downs, the libido and the sexual function. I would say the medication has had the most impact but then of course, it’s very much easier to live with it and accept when it’s even a bigger motivation to live, be with your family and friend and try to enjoy life.

Very good help in mitigating side effects are working out (yoga, aerobic workout, strength / resistance workout), good food and well balanced meals is essential and of course, try to live a good life with family, friends and enjoy the privilige of being alive.

Good luck with your exam and I hope for the best

// Ulf

[dude69]

Hi Ulf, it was May 2023 ADT started where they gave me my first pamorelin castration injection shot to kill the testosterone which as you know stops the cancer from spreading and contains it. latest testosterone measurement 0,5..sucks losing libido and i using viagra which helps but not the same. never had to use viagra before. but heck if it stops the cancer from spreading then fine with me. Have had 2nd pamorelin shot in May and 3rd one scheduled for November then one last one May 2025. then that is it for ADT. They tried Bicaltumide on me at the beginning but was screwing around with my liver values so we decided to stop it and just continue with pamorelin shots. as said so far so go..take care, eric

[ulfhbg in reply to dude69]

Hi !

Mmm, had the same with Firmagon and now also with Orgovyx. Tadalafil on a lower daily dose and then Sildenafil for the intimate moments and, like you said, it’s not the same. But, still greatful because lots of our ’brothers’ in the same situation is not even helped even if using these medication so, like you say, if adt helps out stoping the cancer then fine by me.

Sounds good then, if everything goes according to plan you will go of ADT and then, cross your cancer is gone and life returns my friend.

Yes, take care

// Ulf