Should I be concerned? Trying to talk myself out of overreacting!

[Lynsi13]

I have a tendency to “go dark“. It’s a joke in my family that I take every small incident to the worst possible scenario in a blink of an eye. So I’m trying to put that into context with my current concern! 😜😜😜

My dad just passed four years since his diagnosis with stage four PC. When he was first diagnosed, his tumor was so large that it had caused his kidneys to go into failure and he had double nephrostomy tube‘s for nearly 2 months. His cancer had metastasized to a single nearby lymph node. He immediately began chemotherapy and hormone therapy. He ended chemo in November 2015 and has remained successfully on hormone therapy since.

He goes in for his three month testing on July 5 so it’s been a while since we had a PSA test completed. The last time he was tested, it was .07.

He just told me this morning that he had an incident where he had some pain/“pulling sensation” in his bladder when and after he urinated. He also said that he experienced it a few times afterwards but that his urine stream remains strong and he is not having any problem with urine flow. No presence of blood or anything, either.

When I had asked our oncologist what we should keep an eye out for in the day to day, he said urinary problems. Does this constitute urinary problems? Does this constitute a reason to be concerned or am I “going dark” again?

[Tall_Allen]

I'm glad the chemo+hormone therapy worked so well for him. That has a good prognosis for living with the disease for a long time. You didn't say what his original PSA was, but if it was high and now it's so low, he has the kind of prostate cancer where you can monitor PSA for progression. If the cancer grows and obstructs the urethra, he can consider a TURP then - but no need for it now.

If all he had was one lymph node met, he can consider whole pelvic radiation, which can be curative. He has to discuss this with a radiation oncologist (not a urologist).

[Lynsi13 in reply to Tall_Allen]

Thank you for replying, Allen! Yes, his PSA at diagnosis was quite high- 257. So the plummet has been quite a relief for us!

Regarding whole pelvic radiation, the word “curative” is music to my ears. Would you mind pointing me to the study that suggests that whole pelvic radiation is beneficial for men such as my dad? My dad’s oncologist is not eager to jump ship: A- when his current treatment is working without too many side effects and B- unless the treatment/study shows the conditions and participants were very similar to my dad’s case; similar Mets, chemo early on, hormone therapy, etc.

And also, would radiation be something he should pursue now, while his PSA remains low and he seems to be responding to treatment? Or should/could he wait until there has been an upward tick in his PSA? My dad is a caregiver to my mom who had a stroke, so he would be reluctant to bring on another treatment and potentially more side effects when his current treatment is working so well!

Again, thank you for your reply and my apologies for my many questions. I like to be armed with a lot of answers before I propose something new!

[Tall_Allen in reply to Lynsi13]

This review has links to all the relevant published studies:

pcnrv.blogspot.com/2017/12/...

You should talk to a radiation oncologist now. Do not wait for the cancer to progress until it gets away from you. He will keep taking his hormone therapy throughout his radiation treatment. The highest cure rate is using brachy boost therapy -25 external beam treatments (5 weeks) + one day for the brachytherapy. He should talk to a radiation oncologist who specializes in brachytherapy.

[Lynsi13 in reply to Tall_Allen]

Excellent. Thank you for the additional info. I’ll check it out and see what my dad and his oncologist think. My dad watched his mother battle cancer in the late eighties so his idea of radiation is quite tainted by the archaic and devastating radiation that was used on her. I’ll need to read up on this form of radiation to be able reassure him that it’s a different ball game! He is seen by Cleveland clinic doctors at a branch of the clinic in another town. I assume this sort of therapy would be available to him. I’ll certainly check it out! Thank you again!

[Tall_Allen in reply to Lynsi13]

Yes, radiation oncology has come a long way since then. IGRT/IMRT has mitigated toxicity considerably, and enabled dose escalation. For some reason, Cleveland Clinic is not big on brachy boost therapy, at least in their Cleveland facility. Where is he located?

[Lynsi13 in reply to Tall_Allen]

Dad’s oncologist is located at the Wooster Ohio branch. We have a new cancer facility at the Wooster hospital that boasts the latest and greatest in treatment equipment. I could always see if it’s available through them, as well.

And yes, thankfully radiation has improved tremendously! My grandmother had a terrible experience.

[Lynsi13 in reply to Lynsi13]

A quick check shows that you’re right, the Cleveland clinic is not on the brachytherapy boat yet, but the Wooster hospital does offer it. So it’s available locally!

[Tjc1]

Evey pain diffent feeling etc im sure make us all think that this could be the monster rearing its ugly head again. It nevet hurts to get it checked out. I give eveything about 3-4 days to go away brfore getting worried.

[Lynsi13 in reply to Tjc1]

Exactly! It’s a mind battle as much as it is a physical one, that’s for sure! But thank you, the 3-4 day policy sounds like a good one for this kind of pain! I’ll give it some more time before I get too excited! Take care!

[Magnus1964]

You have a history of Pca in your family so all of the men should take care of yourselves.

[Lynsi13 in reply to Magnus1964]

I agree! Fortunately I am one of four daughters so PC isn’t a concern! 😊 However dad did undergo genetic testing on our behalf to determine if there were any responsible genes that may cause cancers within us girls and none were detected, thankfully!

[Magnus1964 in reply to Lynsi13]

Great, there are about 4 cancers that are genetically connected with prostate cancer, breast, ovarian, uterine. Glad you are in the clear.

[Lynsi13 in reply to Magnus1964]

Yes! Thankfully we’re in the clear!

[Lynsi13]

Thank you Bill! That’s exactly what I keep trying to remind myself. He is nearly 78 years old but is very physically active in his yard so it’s quite probable that he pulled something!

And I truly hope that you don’t have to battle cellulitis again! One battle is more than enough!

But yes, I’m trying to keep the light on these days... or at least a night light! 😆

Thank you and good luck!!

[j-o-h-n]

Got a flashlight? if yes, turn it on..... if no, then sit in the dark and kvetch....

Anyway thank you for being a loving daughter....

p.s. Probably strained himself in the garden, check for hernia?

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 06/18/2019 2:27 PM DST

[Lynsi13 in reply to j-o-h-n]

Hahaha! I’m opening the curtains a bit... he told me that he’s been feeling good today. I just need to learn to keep the lights on! Thankfully folks like you help shine some light in. 😊

[Hidden]

Please don’t go dark again . He needs your positivity .. Urological discomfort happens . Serious pain must be addressed .. his Psa trend is good . Keep it going for years . I too had the e tubes for a year .. we aren’t ever going to be normal , more like abbynormal . I too ,have just over four years I with APC . Let’s get another four .. Peace good daughter .love him .. hope the discomfort passes , if not ask doc ..

[Hidden]

You are by his side . That’s all that matters . You’re there for him . Priceless .😂. There are no mistakes with love ... You are a jewel ..