Looking for any sort of advice or to hear if anyone has been through anything remotely similar to my dad (75)
He was diagnosed with T3b prostate cancer in September 2024 (gleason score 9 and spread to 2 lymph nodes in pelvic region, PSA 35). He had one shot of firmagon (Sept 2024) but this caused a pituitary apoplexy. He had brain surgery (transsphenodial surgery) but then proceeded to have 2 major abdominal bleeds - all of this made worse by the fact he was on blood thinners. Anyway, 3 months later and he's finally been discharged from hospital and the focus is back on the prostate cancer.
We had his first follow up appt last week and his PSA has dropped down to 1. The doctor basically said the pituitary surgery has removed the part responsible for regulating testosterone, so the surgery has done what the hormone injections would be doing. However, because of the pituitary surgery, he is now not allowed to have the hormone injections, but could potentially be suitable for hormone tablets, such as bicalutamide. The doctors want to do a watch and wait approach for now though, while he gets stronger and just keep monitoring his PSA, but dad is beside himself thinking he's going to die because he's not being treated with anything.
He is on hydrocortisone tablets for his pituitary.
Thank you in advance for any comments/words of advice. I appreciate he's a very complex case and we're lucky he's still here with us after everything he's been through. We all just presumed he would be put on some sort of treatment for the prostate cancer, so a little worried he's not and the thought of it spreading further etc.
To note as well, he has a catheter, but otherwise has no symptoms relating to the prostate cancer
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StaceyMac
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In my opinion- an opinion formed from my treatment as well as being with others who are dealing with medical issues, I think your Dad has gone through a lot in a relatively short time. Lots of stress on his body as well as his emotions. It appears from your narrative, that his med care givers are addressing the situation and " watch and wait " is not unusual or unreasonable. His PSA drop is a good response.
Share your/his concerns with the med care team but while he is getting stronger if he can rest from stress, that may be best. I find that staying present to all the good stuff in life can be pretty good medicine.
Hello, thank you so much for your reply, it's much appreciated and has given me some comfort.
We're pleased and surprised with the drop in PSA as I don't think we were expecting it. Does PSA tend to rise slowly with prostate cancer? This is something I haven't really been able to find an answer to online.
Why was he on anti coagulants and is he back on them? I ask because his background medical health also plays into decision making. Other meds too?
I sense that the oncologist is going slow because your dad is not in the best of health and they are balancing risks of drug side effects against potential benefits.
Waiting 2 or 3 months to regain his health and strength is unlikely to make much difference in the overall scheme if things.
Maybe another discussion with oncologist or nurse specialist to go over risks and benefits, and his anxieties might help him? I tend agree with pjd. I don’t think any of us can really be definitive.in this situation.
After the original prostate cancer diagnosis they incidentally found a blood clot in his lung so he is still currently on blood thinner injections but will hopefully be stopping them at the end of Feb, and by the sounds of not needing any further treatment in regards to that. His other meds are cholesterol tab, laxatives, a water tablet and an antibiotic, as he has had his spleen removed.
Does PSA tend to rise slowly with prostate cancer? This is something I haven't really been able to find an answer to online.
I'll be speaking with his med team this week hopefully. His has most certainly been through a lot and needed to learn how to walk again, but he's been fully discharged from hospital/physio and is now walking really well and back to gardening etc. He just gets tired a bit more easily and has lost a lot of muscle. We were all feeling quite optimistic about the future after everything that happened, until now really.
Getting fitness back is really important. When he does start on PCa treatment, the reduction in testosterone will affect his muscle and fitness. There are other potential side effects to treatment which your doctors should explain - these include cognitive effects, osteoporosis and metabolic syndrome (weight gain, abnormal blood lipids, type 2 diabetes) - and advise how to mitigate.
So the fitter he is before starting treatment will help. Using light weights to exercise upper limbs is worth mentioning.
You ask about how quickly the PSA rises. It varies hugely between individuals and some repeat results to get an idea of rate change is useful - “ the doubling time”. Your docs can advise on this.
It's true that he doesn't need the hormone injections because of the pituitary surgery. It's a plus for your dad. It means he is already on ADT. Simply said: all the hormone injections do is block the pathway, which in your dad's case was severed. Still, the doctors should monitor testosterone levels in blood, it should be at very low levels.
Bicalutamide is a weaker form of tablets, I don't know why the doctors recommend it - whether your dad has so bad health or because of other reasons.
Nowdays there are much potent 2nd-generation hormone tablets like abiraterone(Zytiga), enzalutamide(Xtandi), darolutamide(Nubeqa) and apalutamide(Erleada). These tablets are similar in function but have different side-effects profile. You should consult with the doctors if any of these would be best for your dad - for example abiraterone(Zytiga) may cause hypertension and that's why it is usually taken with prednisone. But your dad is already on hydrocortisone, so maybe the dosage of hydrocortisone would be increased. If your dad couldn't tolerate one form of 2nd-gen-HT then he could switch to another.
You and your dad need not to worry. If he has the most common type of prostate cancer - adenocarcinoma - which is almost certain, then it is one of the slowest-growing cancers. See links below from Tall_Allen's blog.
PSA rises slowly, but PSA is not the cancer, it's only a marker. Prostate cells release PSA to blood and are fueled by testosterone - without testosterone some prostate cells will die. But some cells survive and mutate so that they can live without testosterone. That's why you should ask the doctors about the "doublet-therapy", meaning adding a 2nd-gen-HT tablets to ADT.
Why does he need a catheter?
We don't know full details of your dad's health, so it's hard to make recommendations.
Thank you so so much for your really helpful and insightful reply, it's much appreciated and you've reassured me a fair amount. I'll look into everything you've said. Thank you again
I agree with WisdomSeeking about looking into the 2nd generation drugs. You may want to supply more info about your dad's diagnosis and treatment in the bio section. If he does not have a medical oncologist well versed in prostate cancer on his "team", you may investigate that.
To relieve his worries about dying from prostate cancer you might facilitate his viewing of the many videos from Dr. Scholz on PCRI.org
May want to discuss transdermal estrogen patches (TEP) as an option. Been on them for nearly eight years after PSA did not go to zero following RP. Had full prostate bed radiation (35 sessions) and been on high level TEP for seven years now and very successful with PSA <.008 and Testosterone <.001 and stable.
No bone density loss, no night sweats, no heart palpitations only slight man boobs which are not a concern to me as PC is technically in full remission.
What I have learned first in practice and later found it documented within the initial research document on Bicalutamide, is that the sensitivity of men to the drug can vary by more than 20:1. I am on the sensitive group and 1/10 the standard dosage is enough to maintain my PSA at the borderline of detectability.
I hope your doctor is keeping track of his thyroid function. The pituitary surgery has probably created a hypothyroid condition. This can cause the patient to forget who he is, what his job is, what medicines he should take.
I wonder what his testosterone level is now? I assume he still has his prostate? PSA of 1 with an intact and functioning prostate seems to me (this layman) appropriate for watchful waiting.
Hello, thank you for your reply. Not actually sure what his current testosterone level is, but yes he still has his prostate. Thank you for giving me a bit of reassurance
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