Hello everyone. We got what i think is good news this past week at my father’s oncologist appointment. His back pain seems to be lessening considerably. After six months on Lupron and zytiga, the docs think the tumors have gone dormant. My father had previously been in so much pain, he could not get off of the couch or put his shoes on without assistance (awful to witness). He’s now able to walk the track at the gym and lift light weights. The oncs said they feel, given his response, that he will have a long and successful run against his advanced diagnosis.
The only troubling thing, is that after the visit, we
Checked into his chart and his psa has risen slightly. He went from a .03 to a .09. Doctor friends and other professionals have said we shouldn’t worry in that psa levels can change throughout the day and that this isn’t necessarily representative of an actual elevation.
His psa was in the 160 range when diagnosed 10
Months ago.
Thoughts ? Has anyone had a similar experience ?
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Stumpgirl
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That is a GREAT PSA response to the hormone therapy! And it is great that he got so much pain relief from it. There's nothing to worry about from tiny amounts like that - he still has a very favorable prognosis because the levels are so low.
A difference of 0.06 is easily due to lab error. Rejoice! My oncologist works at both a private hospital and a VA. She insists that I always get my PSA testing done at the same place due to the wide variance in test results at different locations.
Yes - always get tests at the same place. It's not going to vary that widely, but when you are in the hundreths and even tenths, the different calibrations can be less predictable.
That's a pretty small change in PSA. What they always look for are trends -- several months of changes in the same direction, but under 0.1 is great! Even better -- wow - he's not in pain and going to the GYM!!! Embrace this!
I'm a little concerned about the "doctors think" though. In addition to the PSA, your father should be getting bone scans and either MRI or CT to follow what's happening on the insides. The symptom relief surely says A LOT! but that can get pretty subjective (not with the dramatic change here but smaller increments).
Also -- get a copy of his blood results and his scan reports every time. They are his to have. And it's not about not trusting the docs. They usually will not give them to you until they have reviewed them, that's fine, but once you've got the results, get a copy and keep your own file. This is very handy if you want to look something up -- when was his last bone scan? If you talk to another doctor, maybe about a different ailment. If you decide to see a specialist/second opinion down the road. And also -- if you see something in the report that you don't understand.
The first time we got scan results, the doc gave us the info and then we left, with copies. We looked at the copies and we got alarmed by how some things were written against what the doctor had said -- so we got it clarified. It was fine, but we understood better what was going on. Now, we get them to print a copy of the results (blood and scans) while we are waiting. They know us (after 4 years!) and we have a medical background, and so we can have a better conversation when we (finally) get in to see the doctor.
I’m having a very hard time convincing my father to get new scans. He’s claustrophobic and hates the mri. He’s nervous about all of this and also prefers the “would rather not know” strategy. They were deeply concerned he might have fractures or impingement on his spinal cord with as great of pain as he was in and while under treatment. It’s definitely lessened but i am still concerned. The doctors seem to go by symptoms more than anything and feel confident that tumors are going dormant . Thank you so much for your response and advice ! It’s appreciated
That a typical male response. I have friends that say the same. They don’t want to know. With APC we (DO) need to stay vigilant. No bad side effects That’s the good part. It sounds positive.such small fluctuations . Keep him in good spirits. Have a great day!
It is ultimately your dad's choice, and letting him know that is important. You can, however, talk to him about how his choice affects you and your family. The answers that scans can provide are so helpful with treatment and could make a big difference in his quality of life.
Only the MRI is claustrophobic (and I'm with him on that one!). He can take valium ahead of time. But also - the CT is just a donut, and also the bone scan is a much more open machine. I don't know about the PET (but I think it's more like a CT?) Maybe he could start with one of those?
This is the most difficult part of being the one not having cancer -- having to let go and let the patient be his own person.
I hope you can convince him to get something done to get a better picture, literally!
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