Dealing with emotional and physical side effects of prostate cancer

Please seek another provider if that is possible. Seek God as well. Praying for you and your husband now🙏🏽

A prostate cancer diagnosis can be very scary. In the vast majority of cases, people end up with it being a chronic disease, not a deadly disease. I’ve had it for 16 years and have a very aggressive, genetic problem.

You need to tell us a lot more about his case in order for us to really say much.

What was his Gleason score? What was his PSA at diagnosis? What is it now?

Were any of these things found in the biopsy intraductal, ductal, large cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.

What is going on now and what treatments did he have already?

What drugs is he on and has he had his PSA rise, even though he is on the drugs?

As we all find out, one of the hardest parts of this whole nightmare is the waiting.
Waiting for an appointment date, waiting for results, waiting for the next procedure... it never ends.
And while waiting, we feel in limbo... helpless... forgotten.

As I frequently say here... the emotional side of this whole experience is not talked about enough.
Be we have this place - and we're grateful for it.
I can only say from experience that although the wait between procedures is torture, we're able to look back later & realise that actually quite a bit has been done.

Until then.... both of you remember this:
It's his health/life.
Now is not the time to worry about "not wanting to bother" someone.
Nag them mercilessly for updates.
I do.
It's their job - and with so many patients, it's easy to forget how painful the wait is for each patient.

@bkind2bj, you are working hard to advocate for your husband, but not getting the support you need from his team. That is really hard.

What treatment is your husband on? Is he trying to reach his oncologist?

Sadly, this type of thing is getting worse in the US or at least in my region. Healthcare providers and staff are burning out and there are fewer doctors. What used to take a month to get an appointment now takes up to 6 months in my area. Diabetes, GLP's due to obesity and weight loss is dominating the field. My T has dropped to 175 and trying to get in front of an Endocrinologist is looking like a 6 month wait and many of them are no longer taking insurance.

@chippydoo

Same in California in the Bay Area . Impossible to get any app. for anything !!! My whole family resorts to going to local small urgent care for infections of any kind or use "telehealth" online "make believe" doctor services lol I waited 6 mos to have a mammogram , luckily it is just for annual screening BUT, I darn made sure not to miss it since the next one would be in December !!! 😠 Now trying for a month to get teeth cleaning and exam - nobody is even answering a phone lol , just "leave the message , please " and of course nobody calls back ever.
I always laugh when people on "managed care" in other countries complain 🤣 - they get it faster and for FREE !!!

@surftohealth88
I’ve been going to the same dentist for over 20 years. They sold their practice and a new person moved in about three years ago. I get cleaning every six months. When I get my cleaning done, I then make an appointment for the next time. They don’t really have much of anything for three or four months at six months. It’s pretty easy.

It really helps to have a continuing relationship with a dentist office.

I definitely have much shorter Wait times at Kaiser to see specialists. Had trigger fingers I needed to see the hand orthopedist for, Emailed him and in two weeks I was in the office getting my steroid injections.

They can’t take a couple of months for some doctor visits, Not nearly as bad as you describe for your experiences.

It's like our hand guy is on speed dial. He did major stuff on my wife and two trigger thumbs for me. Took me two weeks to get the apt for trigger pinky which I will also get release. Now to serious stuff got my 1 year post radiation end of adt report yesterday and finally after 4 years I have one full year of being undetectable. Very grateful. My T is now the problem down to 175 and it will be 6 months to get into see an Endo. Always something on the 7th floor.

I feel especially lucky, at least so far as it goes with my radiology oncologist. On day one, he gave me his personal cell phone number and told me not to hesitate using it. Not so much with my medical oncologist if/when I try to use the patient portal to contact him, it is a “crapshoot“ as to whether or not anyone will get back to me, without a second attempt at contact.