Looking for hope in similar situation with parent (new to forums)

nagem11
nagem11 Member Posts: 1
in Prostate Cancer #1

Hi there,

First off I'm so appreciative of any one taking the time to read this and offer their thoughts or similar experiences - it really means a lot. My Dad was diagnosed just last Oct. 2018 with prostate cancer. I scoured through these boards then and reading other's stories really helped. But a recent setback with my father's diagnosis/treatment prompted me to sign up and gain some further insight.

As a background my Dad is only 61 years old has pretty good health all things considered. But he is a type 2 diabetic, and a former smoker. I was just so grateful that he decided to quite smoking because that was no easy feat and then shortly after he gets this diagnosis. Frown Prostate cancer does run on his side of the family. When my dad was first diagnosed - it was a very scary time. I believe his PSA 12.4 and his gleason score of the various core biopsies were between 7-9 indicative of an aggressive cancer. I'm not too sure of the specific details but the highest gleason score listed was a 9. He had CT scans, a bone scan done several weeks later and nothing alarming was brought to our attention. His results made it seem like there was no visible spread so first step from here on out was surgery. He did opt for a radical prostactemeny (robotic type) which he had just back at the start of this year, Jan. 2019.  Surgery went well. His urologist/surgeon did say that he removed a lot of surrounding tissue though around the prostate as well as 45 lymph nodes.  I think after surgery, the surgeon said that 3 out of the 45 nodes tested positive for cancer.  So from there he had follow up testing to see what further treatment would be needed. My dad had his follow up PSA test several weeks after surgery and the results came back very low (0.034) but still had a recommendation of radiation. So he went to see an oncologist and he had his first Lupron shot.  The plan was to start radiation in a couple of months - but they wanted to determine where it should be targeted so my dad just had his first MRI this week. And this is where I come for answers/similar experiences & some hope. His doctor said that the lymph nodes looked OK but there was a spot on his spine that looked a bit 'suspicious'.  He didn't say for sure that it was his prostate cancer -- but he wants my Dad to have another follow up MRI so they can look into this area a bit more.  Now I should note, back when my Dad had his bone scan prior to his surgery; there was a call out of an area of my Dad's spine that had a typical appearance of Spondylosis. It wasn't a 100% confirmation of it but whatever the scan showed - that's what the results made it seem to be.  I did a quick search of that and it seems it more arthritic?

However now that his oncologist mentions that there is this 'suspicious' spot on his spine with his recent MRI - I'm trying to hold out hope that it is actually "Spondylosis" and his prostate cancer hasn't actually spread to his spine/bones because I would be devestated if that was the case.  The doctor did say he wasn't so alarmed given his PSA was a really low level but they just want to be proactive and check out this area some more before he is supposed to start radiation.

So has anyone out there had a similar situation? I really don't want to be the one to worry but its been so much waiting for results>more testing>waiting some more and I don't know how everyone does it even has a family member, let alone the person on their own cancer journey.

Thank you so much again for taking the time to read & respond 

Comments

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #2
    Hard to tell

    Hi there,

    It is very hard to tell what it is.
    Your father has a very low PSA but an metastase can produce very little PSA while it is small but there are some cancer cells present.
    He has a high Gleason score so they are likely to be quite aggressive.
    If it is a cancer then it may be treatable with spot radiation and hormone therapy.
    The urologist could try treating him with Lupron, Casodex or Firmagon as a first step, if the spot is cancer it could shrink.
    It is possible that radiation and hormone therapy will cure him or put the cancer so far into remission that he will have at least five years or a decade without serious problems.
    Coping and waiting is hard, I have started to view my case as a game of chess with the Ankou, the Breton embodiment of death.
    My wife is convinced that I am cured and I hope the same for her sake as she is not well also.

    Best wishes,

    Georges

  • Clevelandguy
    Clevelandguy Member Posts: 1,180 Member
    #3
    Keep up the course

    Hi,

    Just keep on the investigation with the doctors.  As George stated if there is a spot they can treat with radiation which should knock it down. Unfortunately you will just have to take this one step at a time and see what developes via various scans and psa tests. Test and react, test and react, etc.  Hopefully you will get to a point where his psa is relatively stable for a long period of time. Don’t be afraid to get a second opinion from another doctor just to be safe. 

    Dave 3+4

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #4
    Clevelandguy said:

    Keep up the course

    Hi,

    Just keep on the investigation with the doctors.  As George stated if there is a spot they can treat with radiation which should knock it down. Unfortunately you will just have to take this one step at a time and see what developes via various scans and psa tests. Test and react, test and react, etc.  Hopefully you will get to a point where his psa is relatively stable for a long period of time. Don’t be afraid to get a second opinion from another doctor just to be safe. 

    Dave 3+4

    Welcome

    Welcome, nagem

    When your father tested post-Davinci at 00.034, that was clinically undetectable, meaning that it indicated no detectable disease activity. (Almost all labs in the US regard a result of less than 00.04 as 'undetectable.')  But, with the two positive nodes, and some Gleason of 9, most oncologists would indeed schedule adjuvant RT.   I am surprised that HT was begun prior to the RT; this is backwards from what most guys report.  HT WILL make the PSA go to zero (when so little is present to begin with), but most doctors would not artifically try to induce that at this point, preferring to monitor PSA changes for a time instead.  Summarized, RT usually preceeds HT.     It is within the realm of possibility that, with the removal of the nodes, your father is in fact PCa free now.  But oncoloigst will (and really should) proceed as if there was escape.

    We all write here as laypeople, and cannot give medical advice. But we can share our thoughts.  As a man who has had massive orthopedic trauma, and a LOT of PET and CT scans for other diseases, my intuition, which is NOTHING more than a guess, is that the spinal spot is NOT PCa on the bone.  Usually, for detectable bone tumors, the PSA has already gone sky high.  This is almost always what men with bone metastasis report, and what I have seen to be the case in friends. I just don't think it is, but the doctors must determine exactly what it is in this situation. I hope you share what they determine.

    Get a copy of your father's surgical pathology report.  It will state whether or not there were 'positive margines' in the gland capsule, whether there was perineural invasion, and whether or not the urethera and seminal vesicles were clear of PCa.  You want all of these to be negative. Any one of them is a possible avenue for disease escape.

    You father's situation currently sounds minor but undetermined.  He should be heathy and very well for many, many years, regardless of what the testing determines.

    max

Discussion Boards