Post RP and SRT journey - oh joy

hewhositsoncushions
hewhositsoncushions Member Posts: 409 Member
edited July 27 in Prostate Cancer #1

Hi all

I thought I would start a fresh thread as things have changed dramatically.

My PSA has rised to 0.24 and I have now started HT (casodex with two three monthly injections of Triptorelin).

Back story.

PSA rose to 4.0 early last year.

Biopsy suggested G7 (4+3).

RP surgery (bilateral nerve sparing) confirmed the Gleason with staging marked as T2c, with 3% of organ marked as tumour.

PSA rose to 0.17 at the end of Feb and 0.24 at end of March. Total 7 months

Aww crap.

Saw the onco on Tuesday.

Quite direct, told me straight out I was going on HT (6 months) and RT (months 4 and 5).

Flatly refused to discuss PSADT / nomograms / outcomes / forecasts on the grounds that "every case is different". Basically "we will treat you and respond / react / change treatment according to your blood tests as and when". Told me no scans as it would be too small to detect and could never tell if local of spread. I worry that he is pessimistic but won't let on because my records note my anxiety.

Got given all the info about side effects which I already knew.

Basically I feel on a conveyor belt now.

Unfortunately I am a high functioning pessimist at the moment so I have written myself off given the early (ish) relapse and the (relatively short) PSADT.

I need someone to shout at me and tell me to stop being a worrier and get on with it.

Cushions

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Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,737 Member
    edited May 2018 #5
    Great !
    I loved that line, Hewho: "A high functioning pessimist." I would add a man with insight, also.

    It is good for you that you got a doctor willing to be a bit dictatorial, since his responses mirror Best Practices for your particulars in the US. I also agree that imagining in cases such as yours is usually a wast of time.

    Better getting cured now than hand-wringing for months and months. Be glad you have the doctor whom you have,

    max
  • Josephg
    Josephg Member Posts: 317 Member
    Now on SRT with HT - What to Expect

    Hi Cush,

    I'm sorry to read that your RP failed.  I know what you are going through regarding the emotional roller coaster ride, upon hearing the news and then looking forward to the next phase of treatments.  I've been there, and I'm still around.  :-)

    I believe that your medical team is recommending good next steps, with an aggressive approach (simply my layman's opinion, based upon my similar experiences, and not as a medical professional).  In terms of what you may expect to encounter/experience during this next phase of treatments, I offer you to view my experiences located in the link below, and you can add them to your inventory of collected and reviewed information.  Of course, every instance of PCa is somewhat unique to each individual, and one's experiences do not necessarily fully map to another's experiences.

    http://csn.cancer.org/comment/1414101#comment-1414101

    I wish you the best of outcomes on your journey.

  • Steve1961
    Steve1961 Member Posts: 301
    Hope this isn’t a bad question

    i am seeing mt surgeon Tuesday with many questions before I decide.on surgury   One  question will be if RP fails would I or anyone be kicking themselves in the butt for not just doing radiaction treatments .

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,737 Member
    Steve1961 said:

    Hope this isn’t a bad question

    i am seeing mt surgeon Tuesday with many questions before I decide.on surgury   One  question will be if RP fails would I or anyone be kicking themselves in the butt for not just doing radiaction treatments .

    Steve,

    Everyone reacts differently to things, successful or unsuccessful. The only person who can say what you would do is you. If you think RT better, do RT.

    For non-metastatic PCa, surgical removal is the best thing available toward achieving cure; I read this at the Harvard Medical School oncology site recently (it said that first-line RP has a minor, better chance of 5 year freedom of disease than RT).

    No treatment has any guarantees. None of this has a warranty.  But a trace of optimism never hurt anyone, and might do you a world of good, regardless of what decision you make,

    max

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    Thanks for the input folks.

    Thanks for the input folks.

    i am happy with the treatment plan and so far side effects from the pills are limited to a change on body odour and mood swings.

    I am very aware of what is to comes side effect wise. Have mixed feelings but better this than the alternative!

    The fact that I was t2c n0 m0 3% yet still had a psa rise bothers me but as the Prostate Cancer UK nurse said it could well be just a few escaped cells. It could be worse. Who knows?

    I am led to be they do not do diagnostic scans as micro mets are too small. They will do planning scans for the IMRT when ready.

    I just have to press on.

    cush

     

  • cf
    cf Member Posts: 3
    SRT with HT

    Hi Cush - definitely sorry to hear that your RT failed.  I think that happened to a lot of us, and it is kind of a drag.  I think that you are taking the right approach, but maybe that is just wishful thinking since I have been in the same boat.  I got diagnosed 6 years ago, Gleason 4+3 and it was a T3bN0M0.  Well I was one of those who said, "at least I got the good kind of cancer." :-).  Did an RP and hoped that it was over.  But hey, 4 years and 10 months later it reared its ugly head again.  I went of for 33 days of RT and 6 months of HT (Lupron).  At the end of the RT,of course my PSA was  about zip, but so was my Testosterone and libido!  Woo hoo! 

    Anyhow, the place where I had the radiation done, has a program that is truly wonderful and maybe you can find one where you are.  Basically they call it BfitBwell (google it).  It is an exercise program for cancer patients and it really is great for you physically as well as mentally.  The program had a personal trainer assigned to you twice a week for an hour for three months.  The PTs were all cancer PT specialists.  It really has changed me a lot since I am now in the habit of going to the gym 5 days a week to work out. There is a lot of research being done with respect to cancer and exercise, and all of it says it really can make a difference.  And yes, all of the lupron side effects are a drag, and the radiation was not particularly fun either.  And sometimes I feel a bit down but I am  a lifelong optimist with a great outlook on life.  My understanding is that the residual effects of the drug will wear off within a year so no worries.  Keep the faith bro, and carry on!  Try some exercise if you are not doing it already and it will help!

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    Hi all

    Hi all

    Got sidetracked :)

    @cf - yeah - it seems to be about 30%? Problem that stresses me is that I did it in less than a year which doesn't look good for 15 years. It sucks because I am in a horrible grey area with a G7(4+3) T2cN0M0 with no margins but a relapse within a year. I understand that <6 months and you are really stuffed but <1 year with what seems to be a quick PSADT (the onco refused to tell me what he thought it was but to be honest, there were only two data points - 1.7 at 8 months and 2.4 at 9 months-ish) I feel like t is Russian Roulette. As you say thought it was caught quick. Just have to pray it is localised. Got too many thoughts going on in my head at the moment :(

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    What I find hard is so many

    What I find hard is so many people saying "don't worry - you will be fine" when I have at best a 50/50 chance of RT working - does anyone else find other peoplea optimising hard to take?

  • RobLee
    RobLee Member Posts: 269 Member
    They want to be supportive

    Those who haven't had cancer - and know little about it, want you to know that they care, but don't know what else to say. "Be strong, and you'll be fine" is what's usually said. I suppose it sounds better than "ugh, glad that didn't happen to me!" I know cancer patients get so sick of hearing recommendations like "don't eat sugar or dairy" and "avoid red meat".  And of course there are those who will try to convonce you to drink only alkalized water or go on a ketogenic diet.  And my favorite is "you should see my friend's oncologist, he cured her".

    In the end they want to help somehow. Maybe we should just say, "want to help? Remain my friend even when I'm sick".

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,737 Member
    Title

    Hewho,

    Rob's last caption summarizes it all: people are trying to be encouraging.  Most people have no familiarity with cancer, just as they have no familiarity with medicine generally.  Hence, the common statement that they were "shocked" when they learned they had cancer.  Why ?  25% of all people get cancer, so why is it shocking ?  Some cancers kill n a few months, some usually never kill.  A basal cell skin cancer, for instance, is so minor as to be almost irrelevant.  But they are ready to faint.... Studies have shown that about half of all Americans cannot name the Vice President. Over 33% of Americans cannot came the three branches of US federal government (Executive, Legislative, Judicial), and a significant number cannot name ONE.

    I was in a graduate school history class one day (a course toward the M.A. Degree), and a girl next to me asked, after the teacher said someting about St. Francis, "Excuse me -- that 'St., Francis' the professor mentioned: Would he have been a Catholic ?" She was 100% sincere, and 100% clueless.  Gun critics in the US routinely propose legislation, when they overtly know nothing about gun specifics -- NOTHING.  Journalists are similiar; most routinely cannot differentiate between a semi-automatic verses automatic weapon at all. Most don't know a revolver from a semi-automatic, for that matter.  Profound ignorance is the norm.  But they are the "experts," and shape public opinion.

    My former boss, retired Army, recently let it slip that he was "sorry I was castrated." I asked what to hell he meant, and he said "You had your prostate removed, right ?"  He thought that meant removing the testicles. I have heard other men say this also.  Most men cannot tell you where the prostate is, or what its function is.

    My mother-in-law tells me all the time what to eat to be healthy, and says I should not be taking statin drugs....this from a woman who has never had a medical class in her life, not even a biology course.  But she knows better than my doctors.  And, she is 100 pounds overweight.  She won't use a cell phone, "because they cause brain cancer," but uses a cordless phone all day long, despite the fact that the cordless phone has more wattage than the cellphone. I find it hard to deal with morons.

    What I find most difficult is dealing with are people whose first question after hearing that someone has cancer is, "How long does he have?" As if every cancer is fatal.  No wonder these intellectual giants are ready to believe that reefer cures everything, or that someone got leukemia because their neighbor put out some Roundup one day, back in 1997,or because they had a chest X-ray once....  A judge in Los Angeles ruled recently that California must put Black Box warnings on COFFEE, "because it causes cancer." [Superior Court Judge Elihu Berle. AP article from 30 March 2018, later run by CNN and all the other major networks]  The judge's lunacy is being appealled, of course.   Coffee, one of the most ancient foods known to mankind, and evaluated to actually have numerous helath benefits.  My brother bought a pocket knife recently, -- a piece of steel. The label said "This product contains materials known to cause cancer in California." When I go to the hardware store, half the power equipment has tags saying, "Not legal for sale in California."  Areas that make reefer legal, or that give out free needles to heroin addicts, warn us that coffee is fatal. 

    In 2010. a US Congressman (Hank Johnson, D-Georgia) was questioning an admiral about the desire to put more military personnel on Guam.  The congressman seriously and repeatedly expressed his concern that too many people on Guam might overload the island and cause it to tip over.  This is readily available on YouTube.  He later tried to backtrack this, when he learned that islands aren't like icecubes floating in the ocean.

    Beam me up, Scotty.

    max

  • MK1965
    MK1965 Member Posts: 231 Member
    Coffee

    Even if coffe is cancerous, I will still continue to enjoy it, black and strong without sugar, like I always did.

    I work for company from CaliforniA. That state has different rules on almost anything.

    I am glad, I live in Texas.

    Mk

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    @ Vasco - On my side of the

    @ Vasco - On my side of the water we had people that chose to leave the EU and believe the curent incumbents has their best interests at heart :) You ought to alert the Californians to the lethal dangers of dihydrogen monoxide as a public service. Deadly stuff. Everywhere. Can't escape it, yet fatal!

    @MK1965 - I too work (contract) for a CA company. It is a different planet out there, even ignoring Hollywood, which is a different planet even within CA.

    Thanks for raising a smile to these stressed chops!

  • RobLee
    RobLee Member Posts: 269 Member
    Max!

    Thanks, I literally LOL'ed. Seriously!

    Truth is stranger than fiction... sadly.

  • Grinder
    Grinder Member Posts: 487 Member
    Ditto

    Ditto to everything you guys just said. :D

    The public's general knowledge about cancer, firearms, survival, politics, etc is appalling. Yet with our "everybody gets a trophy" mentality, everyone EXPECTS to be treated as a knowledgable authority on ANY subject, especially celebrities. Just bevause they pretended to be someone else in a movie, they are experts about everything now.

    Even though you guys piss me off sometimes... I have learned a LOT from this forum, and reading into the archives. After listening to you guys, I realize how much disinformation is out there... and cancer snake oil and sideshow barkers.

     

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    Hey guys

    Hey guys

    Quick update - have an early August date for my second jab. No other medical involvement as yet.

    Physical - tiredness comes and goes usually at unexpected times. No other issues.

    Mental - all over the shop. I wake up every morning thinking "DUCK, I have cancer" and stressing that having micro-mets is a given. The only times I feel freedom are when I drink (red wine once or twice a week with consequential negative emotional impact several days later) or when I do Qi Gong and meditation. I cannot work out if this is the HT messing with me or just a proportional reaction to how badly I am DUCKED.

    Trying really hard on the health regimen but self sabotage sometimes ("what's the point?").

    Any suggestions to keep afloat?

    C

  • Grinder
    Grinder Member Posts: 487 Member
    1) Inside the head

    I can only tell you how I handle crises in my life, HWSOC...

    I do not drink anymore, I dont do drugs, I dont need anti-depressants... not because those things are unnecessary, I just do not need them.

    I deal with mental stability from both the Inside the head and Inside the brain and the Outside of myself.

    From the Inside, I have learned through meditation from various disciplines how to focus off problems that cannot be solved, and "blank out" thoughts that drive negative emotions. You may have heard the expression that your emotions are like baby ducks. They follow whatever train of thought or experienve is before them. If you watch a scary movie you get scared. If you watch porn you get horny. If you even think avout porn you can get horny... so if you think depressing thoughts, you will get depressed. 

    The trick if inside tge head is to control your thought. Simple meditation teaches you to focus on nothing. You start by dismisding a thought as soon as you think it. Just stop. Make your mind blank again. Some people use a mantra to focus away from thought, but you can effectively blank your mind just by stop thinking. Then when another  thought comes into your head, blank it out again. If you find you need to focus on something else to keep from thinking depressing tgoughts, that's ok. Some people read books. I know Catholics that pray the Rosary as a successful mantra, though I would never do that. But you get the idea? Dont let  thoughts that create depressed emotions into your head and get them out as soon they do by FOCUSING on something else.

    Then there's the inside the brain. Next comment

  • Grinder
    Grinder Member Posts: 487 Member
    2) Inside the brain

    There are neurotransmitters in our brain we call happiness chemicals. The most commonly recognized one is dopamine. Dopamine levels can affect mood and general feelings of pleasure and happiness. Here is s description of low dopamine levels...

    "Low dopamine levels can lead to a lack of motivation, fatigue, low libido, sleep problems, and memory loss.  Low dopamine plays a role in depression, ADHD, and addictive behavior."

     Well, that doesn't sound good!  Notice it said "addictive behavior". Meth users are especially vulnerable to addictive behavior. The body functions best when dopamine levels are consistently moderate. But certain drugs trigger an inordinate amount of dopamine and other "happiness chemicals" like serotonin and "pleasure centers". Eating a chocolate bar can trigger a couple. Sex can trigger more. Cocaine can trigger more. But Heroine and Meth can trigger an avalanche. The danger though, Meth eventually disables the body's own ability and the addict cannot stimulate these pleasure centers without meth... then you have the classic and sad case where the meth addict is a paranoid delusional nut case hiding inside his house with lights off and curtains drawn, waiting for his next fix of meth so he can feel happy again.

    BUT this just illustrates my point about dopamine, etc. I have to wonder how ADT chemicals affect dopamine production or its action. 

    My first thought is to increase dopamine levels. EXERCISE is a big one... It increases dopamine, serotonin, endorphins... which is why exercise is always encouraged. Of course we dont feel like exercising... but when we do we are glad we did.

    Then there is diet, of course...

    "Of the chemicals that make up dopamine, none are more important than tyrosine. In fact, tyrosine is considered the building block of dopamine. Therefore, it is important that you get enough of this protein. There’s a large list of foods that increase Tyrosine, including: Almonds, Avocados, Bananas, Beef, Chicken, Chocolate, Coffee, Eggs, Green Tea, Watermelon, Yogurt." 

     But all this may not help if the chemical used to suppress testosterone production in ADT is also supressing dopamine and serotonin production. Therd are probably naturopathic remedies that can increase  these levels. There is also a lot of snake oil remedies out there that claim to increase them. If you find one that works please let me know.

    Maybe one of the other guys knows how Hormone Therapy interacts with dopamine et al production and processing? It is worth a discussion since mood seems to be an issue in ADT.

  • Grinder
    Grinder Member Posts: 487 Member
    3) Outside of myself

    We all know where this is going... Relationships

    That includes relationships with other people of course. But as a Christian the focal point is in my relationship with God.

    I should probavly speak to that since most people have a distorted view of Christianity.

    Quite simply, it is a relationship with God in Christ. Its not about sin, or hell, or especially the Ten Commandments...

    Jesus said this...

    Come unto me, all ye that labour and are heavy laden, and I will give you rest.

    Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls.

    For my yoke is easy, and my burden is light.... Matthew 11

    This is no illusion on my part. I have discovered this to be true... It is the third wheel on my tricycle, and when I have reached the point where I am at a complete loss to meditate my way out of something, or fail to raise my dopamine levels, I can sense the "Comforter", as Jesus called the Spirit, lift me up and buoy my own spirit through. It doesn't happen all the time, just when it's necessary.

    I have a lot more to say about this subject, but the last time we discussed spirituality, the administrators moved the conversation to another forum. So I will just leave at at this...

    Also my relationships with family and friends is very important... my wife is an incredible woman, so that helps a lot... BUT it is hard to maintain healthy relationships in this messed up world, so I treat them as a bonus when I am lucky enough to know godly, contented people. 

    Hanging out with miserable angry people wont make us feel better, that's for sure.

    I don't know if any of this helped, but I do think it's worth a discussion how Hormone Therapy affects dopamine, sertonin, and endorphin production.

  • RobLee
    RobLee Member Posts: 269 Member
    Grinder said:

    2) Inside the brain

    There are neurotransmitters in our brain we call happiness chemicals. The most commonly recognized one is dopamine. Dopamine levels can affect mood and general feelings of pleasure and happiness. Here is s description of low dopamine levels...

    "Low dopamine levels can lead to a lack of motivation, fatigue, low libido, sleep problems, and memory loss.  Low dopamine plays a role in depression, ADHD, and addictive behavior."

     Well, that doesn't sound good!  Notice it said "addictive behavior". Meth users are especially vulnerable to addictive behavior. The body functions best when dopamine levels are consistently moderate. But certain drugs trigger an inordinate amount of dopamine and other "happiness chemicals" like serotonin and "pleasure centers". Eating a chocolate bar can trigger a couple. Sex can trigger more. Cocaine can trigger more. But Heroine and Meth can trigger an avalanche. The danger though, Meth eventually disables the body's own ability and the addict cannot stimulate these pleasure centers without meth... then you have the classic and sad case where the meth addict is a paranoid delusional nut case hiding inside his house with lights off and curtains drawn, waiting for his next fix of meth so he can feel happy again.

    BUT this just illustrates my point about dopamine, etc. I have to wonder how ADT chemicals affect dopamine production or its action. 

    My first thought is to increase dopamine levels. EXERCISE is a big one... It increases dopamine, serotonin, endorphins... which is why exercise is always encouraged. Of course we dont feel like exercising... but when we do we are glad we did.

    Then there is diet, of course...

    "Of the chemicals that make up dopamine, none are more important than tyrosine. In fact, tyrosine is considered the building block of dopamine. Therefore, it is important that you get enough of this protein. There’s a large list of foods that increase Tyrosine, including: Almonds, Avocados, Bananas, Beef, Chicken, Chocolate, Coffee, Eggs, Green Tea, Watermelon, Yogurt." 

     But all this may not help if the chemical used to suppress testosterone production in ADT is also supressing dopamine and serotonin production. Therd are probably naturopathic remedies that can increase  these levels. There is also a lot of snake oil remedies out there that claim to increase them. If you find one that works please let me know.

    Maybe one of the other guys knows how Hormone Therapy interacts with dopamine et al production and processing? It is worth a discussion since mood seems to be an issue in ADT.

    How Hormone Therapy interacts with dopamine et al

    I don't know if they interact or even if ADT affects dopamine, but when I first read the beginning of your post, "Low dopamine levels can lead to a lack of motivation, fatigue, low libido, sleep problems, and memory loss.  Low dopamine plays a role in depression..." the first thing I thought was "wow, that sounds just like ADT".

  • VascodaGama
    VascodaGama Member Posts: 3,515 Member
    ... I don't know if any of this helped, but .......

    Grinder,

    Your above posts are GREAT. I think you have helped many reading it, even those that do not participate in the forum. And, yes, ADT disturbs many of the regulators at our brain, which enter into a vicious havoc cycle trying to balance what is lacking in its natural behavior. Brain uses hormones to trigger signals/commands that will travel throughout the body, and ADT disrupts these. The one most noticed by the majority of patients on ADT are the hot flashes due to disruption of our body temperature clock. Now you have it ... now you don't, now you have it .... now you don't. This is the brain trying to fix the problem.

    I like the way you explain the meaning of "Meditation". After my surgery in 2000, I sort out my emotions by blanking out the thoughts that were driving me negative ideas. It was my wife that at the hospital told me to think of the cancer as balloons that I would seek out bursting them one by one with needles. I follow the tactic and it worked. I never thought it to be part of meditation but I learn it now from your above post.

    Thanks,

    VG