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Post hormone and brachytherapy

DztBlk
Posts: 5
Joined: Mar 2020

Hi

Newbie here!  I am 6 months post last luepron shot to treat my prostate cancer.  Like many, you think that's not going to happen to me. I should have known better. I lost my first cousin at 39 to metatstatic breast cancer and my best friend at 44 to metastatic breast cancer 3 months apart.  To give a little history, I am 49.  I was diagnosed at 47 with prostate cancer and a gleason score of 9.  I am something of a statistic, though many primary care doctors seem unaware.  I am or was fairly young and African-American.  The advice is to test us early, especially if there is a family history.  I could not provide any family history to my providers.  However, after spontaneously losing 25 pounds and not having much of an appetite,I went in for a physical.  I asked to have a PSA done because of a health fair I attended where a physician encouraged men like myself (AA with known family history or lack of family history in general) to get tested because if it hits, it tends to hit early and hard.  The first primary care provider (PCP) I visited simply refused to do it.  Thank goodness I was persistent and went to my old PCP who was reluctant, but ordered the test. My PSA came back at 35 and never decreased after several followup tests.  To make a long story short, I had 3 different scans (including an expriemental one all indicated it was still contained in my prostate THANK GOODNESS), a few panic attacks, some tears, and a failed prostatectomy because it was so inflamed the surgeon (one of the best UCLA) was afraid I would end up with a colostomy.  I underwent brachytherapy, external radiation, and hormone therapy. So far, post treatments my PSA has been along the lines of 0.1.  So, I'm lucky at this point.  I worry because he was not able to remove the prostate.  However, the same awareness that got me through the process still applies, which is be in the moment.  I cannot worry about tomorrow.  Enjoy today and today I feel fine.  I wished I had known about the forum.  I scanned the site, but I think I was just trying to get through each day and focus my attention on other things.  Some part of me felt like I would be an outlier.  When I attended a local prostate survivor group, I was the youngest, the only one with a gleason score higher than 6, and the only African-American (that is only relelvant because of the statistics regarding the disease and my race).  It has not been too long for me since treatment ended, but I hope I have many more years to go as I'm still not 50.  I will continue to read the stories of others, keep anyone who is intested in my case updated, and contribute where I can.  I do not know much and some part of me still doesn't want to put a lot of energy into it, but life has a way making choices for you.  I do wonder how long it will take to feel more like myself post hormone treatment and when will my....virility return (please say it will).  However, those are minor concerns for me.  I am alive.  I just wanted to share some hope and plan to continue contributing.  

 

eonore
Posts: 89
Joined: Jun 2017

Welcome,

I am glad you are here, despite the reasons why.  Thank God you were persistent about getting tested.  I can only imagine what might have been if you followed you doctor's advice not to get tested.  This is the reason we must study this disease and advocate for ourselves.  My understanding is that a Psa test costs $11.00.  There has been a lot of misleading information about the usefulness of Psa testing, however ask anyone who has been diagnosed with prostate cancer about the test and they will certainly recommend it.  I hope you have communicated the outcome to you PCP so that maybe he can learn from his mistake and not harm anyone.

Just out of curiosity, have your post treatment Psa tests been less than .1, expressed as <.1?

Eric

 

 

DztBlk
Posts: 5
Joined: Mar 2020

I suppose I should say 0.1 and not less than.  They have been super low so far.  Fingers crossed.  I did communicate my experience with the PCP to upper management for the organization.  I don't know what the outcome was from the contact.  Yea, even my new/old PCP who was reluctant asked me why I felt I needed one and was thankful I had pushed for it.  The general concensus is that it is stil a disease for men over 50.  I hope no one younger has had to suffer or die because of this mentality.  

 

Josephg
Posts: 220
Joined: Jan 2013

You should start to feel less of the hormone therapy side effects within 3 months after your last injection, and the effects for most folks should lessen over time toward none within 6 to 12 months after your last injection.

DztBlk
Posts: 5
Joined: Mar 2020

Thank you.  It as pretty horrible being chemically castrated.  I'm not sure those close to me really understood what it meant, but I knew the minute my providers suggested the treatment.  You do what you have to do right?

Josephg
Posts: 220
Joined: Jan 2013

People around you, while you are on hormone therapy, will most likely notice some changes in you.  I went out of my way to let family, friends, and close associates know that I was on hormone therapy.

I found subtle, and not-so-subtle, changes in my perceptions, thoughts and actions, while I was on hormone therapy, which I believe, was attributed to my having more estrogen in my system than testosterone.  I was more emotional than normal, and I made comments based more on the first thought that entered my brain, than on thoughtful, calculated logic, and that was not normal for me.  I cried watching some movies, something that I never did before in my life.

But, after the hormone treatments ended, and all of the temporary side effects went away, I returned to my 'normal' self.  I do, however, have some permanent side effects, which I attribute to the hormone treatments.

Each person's PCa journey is different, but I am still here, enjoying a robust quality of life, one day at a time.

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