Not a survivor (yet) but seeking advice

hewhositsoncushions
hewhositsoncushions Member Posts: 409 Member
edited March 2017 in Prostate Cancer #1

Hi all

I've been on PSA surveillance for a year (3.9, 3.3 now 4 with low T) and my GP has arranged an MRI. Asymptomatic apart from needing to pee more at night which is probably age related as much as anything.

My GP says I am either fine or caught early but the low T bugs me as that may be a marker for more aggressive tumours according to the dreaded Google.

I've been rattled (who would not be) more about the range of probabilities of PPV with my stats and the fact that PSA tests are a guessing game.

I know that I have steps to go through (most likely leading to active surveillance) but my question is more about headspace.

How does one keep one's head and not rattle / lean on loved ones (I have a rule about this) whilst in the grey area I am in whilst plodding to a diagnosis / all clear?

Cheers

 

«13

Comments

  • RobLee
    RobLee Member Posts: 269 Member
    edited March 2017 #2
    Suvivor, yes, but feel so alone

    I'm new here myself... signed up last month but only started posting last week. In fact, it never occurred to me that "I am a cancer survivor" until reading a few posts here. My symptoms appeared a few years ago and I had surgery six months ago. I was originally scheduled for radiation this month but that has been postponed due to, uh, issues.  Anyway, been so "busy" with this that it never hit me to use the term "survivor", though I deal with effects of the PCa every hour of every day.

    A couple points in response to your query. Do not allow yourself to be lax in dealing with the possibility that you may have cancer.  I was frantically concerned for the first year when symptoms first appeared. But after a series of negative tests I just said to myself, oh well, maybe if I wait, it will turn into something they can find and treat. The possibility was always in the back of my mind, but I trusted my doctor. Turns out he was himself in failing health and I guess probably dealing with his own issues and after my negative tests did not want to send me to someone else. It wasn't until he retired that I saw another urologist who found a small, aggressive tumor that had already begun to spread.

    If you suspect that there is something there, do not give up easily. If you are getting a second opinion, I would NOT tell the 2nd doctor "here's what my doctor said". They always agree with each other, even if it is wrong. Get an independent evaluation.

    Second, you are the only one who can see the whole picture, and you alone. And you are alone in this, no matter how many people are close to you. I have been married for nearly forty years and have adult male children. I have never been secretive, but if you have done research into prostate problems, they will not know anywhere near as much as you do. They will not be able to give you any advice other than "you should see a doctor". Only you know what happened when.  The whole time that I was dealing with my own condition, the one thing my wife kept telling me was "you're depressed"... like this was something that could be treated with a pill. And now when someone asks how I'm doing (just to be polite or something) if I start to tell them about the decisions I must make regarding getting an implant or undergo radiation (and when to do these things) their eyes just glaze over and say "oh".

    So about the headspace, that is probably the most difficult thing to control. My family was great once I knew I was having surgery (DaVinci RP), very supportive. But they may believe that it's a once and done thing... like once you've recovered from the surgery then you're good to go. But it sticks with you. "I am a survivor". We don't see that much, among us guys. I meet guys all the time who had the same surgery, are dealing with the after effects quietly in their heads, and just don't say much about it. There are no ribbons, no marches or bumper stickers. No "find the cure" campaigns like there are for, lets say, some more "popular" forms of cancer. But if a guy lives long enough, there's a 50-50 chance he'll eventually have prostate cancer. It's no joke, especially when YOU are the one who has it.

    As you age (your age is not mentioned in your post) you begin to have more and more health issues. For guys, prostate is almost a certainty... whether it's difficulty urinating - check out the number of pills sold for issues related to that part of male anatomy. Cancer of some form is probably a certainty also, if not prostate, then skin or colon. Personally I consider myself fortunate that the "real serious" health problems... heart, diabetes, arthritis... appear to have skipped me, at least for the time being. My signature line on another cancer forum I frequent is "everyone you meet is fighting a battle you know nothing about". In other words, everyone has some problem(s) they are dealing with, probably quietly, and those problems are consuming them from the inside. In that you are not alone. But you alone are the only one who must address your own problem. It will in all likelihood NOT just go away on its own.

     

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    edited March 2017 #3
    RobLee said:

    Suvivor, yes, but feel so alone

    I'm new here myself... signed up last month but only started posting last week. In fact, it never occurred to me that "I am a cancer survivor" until reading a few posts here. My symptoms appeared a few years ago and I had surgery six months ago. I was originally scheduled for radiation this month but that has been postponed due to, uh, issues.  Anyway, been so "busy" with this that it never hit me to use the term "survivor", though I deal with effects of the PCa every hour of every day.

    A couple points in response to your query. Do not allow yourself to be lax in dealing with the possibility that you may have cancer.  I was frantically concerned for the first year when symptoms first appeared. But after a series of negative tests I just said to myself, oh well, maybe if I wait, it will turn into something they can find and treat. The possibility was always in the back of my mind, but I trusted my doctor. Turns out he was himself in failing health and I guess probably dealing with his own issues and after my negative tests did not want to send me to someone else. It wasn't until he retired that I saw another urologist who found a small, aggressive tumor that had already begun to spread.

    If you suspect that there is something there, do not give up easily. If you are getting a second opinion, I would NOT tell the 2nd doctor "here's what my doctor said". They always agree with each other, even if it is wrong. Get an independent evaluation.

    Second, you are the only one who can see the whole picture, and you alone. And you are alone in this, no matter how many people are close to you. I have been married for nearly forty years and have adult male children. I have never been secretive, but if you have done research into prostate problems, they will not know anywhere near as much as you do. They will not be able to give you any advice other than "you should see a doctor". Only you know what happened when.  The whole time that I was dealing with my own condition, the one thing my wife kept telling me was "you're depressed"... like this was something that could be treated with a pill. And now when someone asks how I'm doing (just to be polite or something) if I start to tell them about the decisions I must make regarding getting an implant or undergo radiation (and when to do these things) their eyes just glaze over and say "oh".

    So about the headspace, that is probably the most difficult thing to control. My family was great once I knew I was having surgery (DaVinci RP), very supportive. But they may believe that it's a once and done thing... like once you've recovered from the surgery then you're good to go. But it sticks with you. "I am a survivor". We don't see that much, among us guys. I meet guys all the time who had the same surgery, are dealing with the after effects quietly in their heads, and just don't say much about it. There are no ribbons, no marches or bumper stickers. No "find the cure" campaigns like there are for, lets say, some more "popular" forms of cancer. But if a guy lives long enough, there's a 50-50 chance he'll eventually have prostate cancer. It's no joke, especially when YOU are the one who has it.

    As you age (your age is not mentioned in your post) you begin to have more and more health issues. For guys, prostate is almost a certainty... whether it's difficulty urinating - check out the number of pills sold for issues related to that part of male anatomy. Cancer of some form is probably a certainty also, if not prostate, then skin or colon. Personally I consider myself fortunate that the "real serious" health problems... heart, diabetes, arthritis... appear to have skipped me, at least for the time being. My signature line on another cancer forum I frequent is "everyone you meet is fighting a battle you know nothing about". In other words, everyone has some problem(s) they are dealing with, probably quietly, and those problems are consuming them from the inside. In that you are not alone. But you alone are the only one who must address your own problem. It will in all likelihood NOT just go away on its own.

     

    Cheers

    Cheers

    That pretty much sums it up.

    I have rapidly become very aware of the modalities of diagnosis and treatment of PCa and am more than willing to push as needed. My GP is a decent chap and puts up with a lot of sh*t from me but has always been there.

    I agree about dealing with it - all men are an island. Good thing I have started studying stoicism recently!

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    edited March 2017 #4
    Proper medical attention

    The PSA is an indicator only. There are various factors that affect the PSA levels, namely sex, riding a bike and other exercise and evern a hard stool  before the blood draw

    I wonder what your age is; what promted your doc to place you on surveillance; whatdid your digital rectal exam reveal.. 

    Does the MRI that your GP recommends use a T3 magnet?

    Did you undergo any other tests. ie PCA3, etc

    Suggest that you see a urologist, prefably one who specializes in Active Surveillance to manage this situation. 

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    edited March 2017 #5
    RobLee said:

    Suvivor, yes, but feel so alone

    I'm new here myself... signed up last month but only started posting last week. In fact, it never occurred to me that "I am a cancer survivor" until reading a few posts here. My symptoms appeared a few years ago and I had surgery six months ago. I was originally scheduled for radiation this month but that has been postponed due to, uh, issues.  Anyway, been so "busy" with this that it never hit me to use the term "survivor", though I deal with effects of the PCa every hour of every day.

    A couple points in response to your query. Do not allow yourself to be lax in dealing with the possibility that you may have cancer.  I was frantically concerned for the first year when symptoms first appeared. But after a series of negative tests I just said to myself, oh well, maybe if I wait, it will turn into something they can find and treat. The possibility was always in the back of my mind, but I trusted my doctor. Turns out he was himself in failing health and I guess probably dealing with his own issues and after my negative tests did not want to send me to someone else. It wasn't until he retired that I saw another urologist who found a small, aggressive tumor that had already begun to spread.

    If you suspect that there is something there, do not give up easily. If you are getting a second opinion, I would NOT tell the 2nd doctor "here's what my doctor said". They always agree with each other, even if it is wrong. Get an independent evaluation.

    Second, you are the only one who can see the whole picture, and you alone. And you are alone in this, no matter how many people are close to you. I have been married for nearly forty years and have adult male children. I have never been secretive, but if you have done research into prostate problems, they will not know anywhere near as much as you do. They will not be able to give you any advice other than "you should see a doctor". Only you know what happened when.  The whole time that I was dealing with my own condition, the one thing my wife kept telling me was "you're depressed"... like this was something that could be treated with a pill. And now when someone asks how I'm doing (just to be polite or something) if I start to tell them about the decisions I must make regarding getting an implant or undergo radiation (and when to do these things) their eyes just glaze over and say "oh".

    So about the headspace, that is probably the most difficult thing to control. My family was great once I knew I was having surgery (DaVinci RP), very supportive. But they may believe that it's a once and done thing... like once you've recovered from the surgery then you're good to go. But it sticks with you. "I am a survivor". We don't see that much, among us guys. I meet guys all the time who had the same surgery, are dealing with the after effects quietly in their heads, and just don't say much about it. There are no ribbons, no marches or bumper stickers. No "find the cure" campaigns like there are for, lets say, some more "popular" forms of cancer. But if a guy lives long enough, there's a 50-50 chance he'll eventually have prostate cancer. It's no joke, especially when YOU are the one who has it.

    As you age (your age is not mentioned in your post) you begin to have more and more health issues. For guys, prostate is almost a certainty... whether it's difficulty urinating - check out the number of pills sold for issues related to that part of male anatomy. Cancer of some form is probably a certainty also, if not prostate, then skin or colon. Personally I consider myself fortunate that the "real serious" health problems... heart, diabetes, arthritis... appear to have skipped me, at least for the time being. My signature line on another cancer forum I frequent is "everyone you meet is fighting a battle you know nothing about". In other words, everyone has some problem(s) they are dealing with, probably quietly, and those problems are consuming them from the inside. In that you are not alone. But you alone are the only one who must address your own problem. It will in all likelihood NOT just go away on its own.

     

    Well said . . .

    Well said, RobLee.

    Personally, I treated my diagnosis of PCa as a problem to be "solved" and didn't let my emotions come into play.  This is fairly typical of men and is something women often complain about but it's how I normally deal w/adversity of any kind.

    I was divorced and lived alone at that time; still am divorced and live alone now.  I had (and still have) a GF and my sister who I confided in about the "problem" but they each left it to me to decide what course of action to take, didn't try to give me advice and just provided as much "emotional" support as I was willing to accept.

    My HMO at the time -- Kaiser NorCal offered me only 2 choices -- surgery or low dose brachytherapy.  After doing research on those options, I was NOT convinced that they were the best for me.

    After doing further research on the other available options, decided that I wanted to be treated with CyberKnife (CK is a form of stereotactic body radiation therapy) which represented the same prospects for a "cure" and the least risk in terms of side effects. 

    I had to change medical insurance carriers from Kaiser to Blue Shield, which delayed my treatment but I was finally treated at UCSF w/CK 9 months after diagnosis and the results confirmed my choice. 

    I've been cancer free for over 6 years and experienced no side effects whatsoever during or following the treatment. 

    That said, all of us survivors live with the possibility of a recurrence.  Personally, I don't dwell on it and just live my life w/o regard to it.  I am back on a once a year PSA test schedule and the next one is due in Aug/Sep of this year. 

    That's the only time this year that I will be "worried" about it again -- going to the lab and waiting for the PSA result, hoping that it confirms the continuing decline of the trend in results over the past 6 years (or at least not indicate a rise).  

    Such is life for we who have been treated and remain survivors of prostate cancer.  

  • VascodaGama
    VascodaGama Member Posts: 3,547 Member
    Either fine or caught early

    Cushions,

    I guess you live in Europe (I do). Your sense of humor and the GP story is typical in our European health care systems. The first guy you meet is the one you shouldn't ever meet. We trust them because they have the title of doctors but when cancer is the case the only help we may expect from them is a simple referral letter to see a specialist (you couldn't get to one without them). The way you describe your PCa screening, recommended by the GP, is out of context. I wonder your age but note that a PSA of 3.9 ng/ml in a young 60 years holder is high enough for being concern with something more problematic.  Surely you need to consult an urologist and having an MRI image in the pocket is helpful as the uro will advance with some more strategic. In any case the three PSA readings already warrants a biopsy which would be the ultimate prove to prostate cancer diagnosis.

    I wonder if you should continue your screening with the recommendations solo by your GP. His comment about "...either fine or caught early..." is totally base less. It shows how much responsible he feels about your case. Even with state-of-art diagnosis one is never sure if the cancer exists or even if it has already spread. I think it better that you do your own researches and take the lead in commanding your screening. Can you share details on other issues for us to opinion. What is the T level? Have you experienced urine retention? what about the results of a DRE? How far apart were the tests done?

    I hope you never get such dreaded title of a PCa survivor.

    Best,

    VGama  

     

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member

    Either fine or caught early

    Cushions,

    I guess you live in Europe (I do). Your sense of humor and the GP story is typical in our European health care systems. The first guy you meet is the one you shouldn't ever meet. We trust them because they have the title of doctors but when cancer is the case the only help we may expect from them is a simple referral letter to see a specialist (you couldn't get to one without them). The way you describe your PCa screening, recommended by the GP, is out of context. I wonder your age but note that a PSA of 3.9 ng/ml in a young 60 years holder is high enough for being concern with something more problematic.  Surely you need to consult an urologist and having an MRI image in the pocket is helpful as the uro will advance with some more strategic. In any case the three PSA readings already warrants a biopsy which would be the ultimate prove to prostate cancer diagnosis.

    I wonder if you should continue your screening with the recommendations solo by your GP. His comment about "...either fine or caught early..." is totally base less. It shows how much responsible he feels about your case. Even with state-of-art diagnosis one is never sure if the cancer exists or even if it has already spread. I think it better that you do your own researches and take the lead in commanding your screening. Can you share details on other issues for us to opinion. What is the T level? Have you experienced urine retention? what about the results of a DRE? How far apart were the tests done?

    I hope you never get such dreaded title of a PCa survivor.

    Best,

    VGama  

     

    Hi

    Hi

    Some details:

    Age 50

    Test (nmol) - 9, 12 and 9 over a year

    Psa - 3.9 (1 year), 3.3 (9 months), 4 (last week)

    DRE - negative a year ago

    Symptoms - wake up at 4am to pee quite often and occassionally have very mild slower peeing but no stop start. Also have IBS on a regular basis.

    I suspect my GP is using the MRI as a gateway to further tests.

    Have no idea how it works - is it just have a scan and go home or talk to a uro then and there? How would I puh ths forward? Any takers?

  • VascodaGama
    VascodaGama Member Posts: 3,547 Member
    edited March 2017 #8
    Use diplomacy confronting the GP or get really mad

    With these added info I would think that the peeing issue is not age related. Have you though in UTI? Such could be the cause behind the urge for urination and it could justify the high levels of PSA (constant within two years). Probably I would start with one-month protocol of antibiotics/anti-inflammatory medication (at the recommendation of the GP) followed with another PSA test, before seeing an urologist, or you can request for the referral letter to see an Uro straight and discuss on the above with him directly.

    At the moment do not skip the proposed MRI (use diplomacy). The image exam can provide details regarding the size of the prostate gland and may detect existing hyperplasia (a benign condition that causes high PSA). The cancer can be found only via a biopsy that is ordered by an urologist. Cancer could exist even with a PSA lower than the present levels of yours.

    The testosterone is at the lower limit of what it is considered normal (>245 ng/Dl ; >8.5 nmol/l). You may be experiencing some symptoms of menopause (hypogonadism) but these levels of T do not link the stuff to aggressive type of cancer or even to the urination issue.
    You need to consult a gastroenterologist for your gut disorders. IBD (Inflammatory bowel disease) may include a series of disorders like stomach cramps, bloating, diarrhea, etc, but these are not related to PCa. In any case, if any of your symptoms are due to existing ulcerative colitis, then you should know that treatments involving radiation at the lower abdomen (ex; prostate cancer) becomes conditional.

    Having a MRI at the age of 50 is recommendable. Image studies are helpful when used in comparison with other previous images. Apart of that, this MRI suggested by your GP will also help in checking part of your gastrointestinal tract ((Killing two birds with one stone).
    After the MRI the GP will probably give you the referral letter to see a specialist at a local hospital. You should insist in having referrals for the two specialties (uro and gastro). If he/she doesn't attend your request then confront him in high voice, if needed. The police will be on your side.

    Best wishes.

    VG

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    edited March 2017 #9
    Cheers

    Cheers

    It could well be a chronic UTI or BPH.

    I am comfy going for the MRI (next week) but confused as to the modalities. Do I just go in for a scan and get an offline review and follow up or do I talk to someone then and there? Never made clear. I am going to try and clear that up. Typical British administration mentality - chuck you on a pathway and don't explain it. What you are saying is that it may be scan > review > GP > next steps ...???

    Was worried about the low T thing but you are suggesting that these levels (very low "normal") are not likely to be linked to aggressive PCa if I read you? You are correct about HypoG - I have been fighting that battle for a year and was due to see a private TD specialist this week before all this lot blew up. Bahaaha! God has an evil sense of humoir :D

    I could try and push on the IBS but frankly I suspect it is stress related - I am a total wuss and get bad stress over small and big things and the IBS always flares when I am stressed. Given that the biggest producing area of the body or serotonin is the gut this is not a surprise. Funny how we all become experts in our own particular malaise :)

    Cheers

    Cushions

  • RobLee
    RobLee Member Posts: 269 Member

    Hi

    Hi

    Some details:

    Age 50

    Test (nmol) - 9, 12 and 9 over a year

    Psa - 3.9 (1 year), 3.3 (9 months), 4 (last week)

    DRE - negative a year ago

    Symptoms - wake up at 4am to pee quite often and occassionally have very mild slower peeing but no stop start. Also have IBS on a regular basis.

    I suspect my GP is using the MRI as a gateway to further tests.

    Have no idea how it works - is it just have a scan and go home or talk to a uro then and there? How would I puh ths forward? Any takers?

    You get the scan and go home.

    A specialist will examine the images and forward a report to your doctor, who will then discuss the results with you.

    If offered an MRI, do take it by all means. It will reveal all kinds of things that give no hint from the outside. I'm not sure if I mentioned it earlier, but MRI's were instrumental in identifying both my own cancer and my wife's.  In my case, both DRE and ultrasound biopsy were negative. Two years later an MRI revealed the tumor, and a second biopsy guided by the MRI identified its severity (stage 3).  In my wife's case, she had severe back pain which the doctor was treating as a muscle strain.  Eventually we paid CASH for an MRI, bypassing the insurance for expediency. That MRI revealed a tumor on her spine.  Ultimately the diagnosis was stage 4 primary bone lymphoma.

    They say a picture tells a thousand words. Without the MRI they are just shooting in the dark.

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    Doh

    Doh

    Posts out of sync :D

    So thanks for the clarification - looks like I turn up, make sure I take my keys out of my pocket, dive in, get scanned and wait and see.

    Thanks for the kind support!

    Smoke me a kipper :D

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,765 Member
    Perspective

    hewho,

    It seems to me you are flying in the dark.  Very little data to proceed on, yet of the view that PCa (if present) is "minor or caught early."  As Vasco noted above, such a view at this point is BASELESS; nothing more than an assumption.  "Assuming" that it could be this or that is not medicine.  Medicine is determining what it is

    Regardless of health care system, until you have a biopsy you really know nothing definitive about the heath of your prostate or what sort of cancerous involvement may be present.  Do not become fixated on the T-level, since it reveals very little.  I had RP two years ago, but have never had a T-level test in my life that I am aware of, and it certainly was not determinative of anythng if I did -- never mentioned by a doctor.  T is seldom mentioned in most diagnostic guides.   A negative DRE also proves little, since it checks only the rear/base of the gland, not the other side.  Many, many men have Stage II PCa with completely negative DREs.  "Stress",  like anger, in some situations, is normal and a survival reaction to an animal that is threatened. 

    Attitude postive or negative or cheery wit won't affect any of the above one way or the other,

    max

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    Agreed which is why I will

    Agreed which is why I will take this step by step working from what is known

  • VascodaGama
    VascodaGama Member Posts: 3,547 Member
    Chuck to a pathway

    Cushions,

    We all will cheer at your negative diagnosis. Apart from the PSA, nothing of your shared info is suggestive of prostate cancer. All these would be looked differently if anybody in your close family (father mother, brother) has or had prostate or breast cancer. These bandits use the same genes to proliferate turning the holders at higher risk for contamination. In any case, your condition needs to be addressed by an urologist and the PSA level warrants that.

    I image you being that polite gentleman taught to follow the cradle-to-grave system of British health care without contesting but you need to take the leadership of your health. Nor the GP or anyone else will know exactly what is happening or even bother to find problems with such affinity. You need to know the basics, inquire when in doubt, act on the problem and relax once satisfied.

    Typically, the GP is the first person we meet. He tries to identify the reason of the problem (that took us to him) and then he moves us up to a specialist (in an hospital). This new guy is then our pivot within the system through whom we have access to real health care. This specialist can also attend your other requests for consultations in different specialties (gastro for instance). You need to use diplomacy when talking with them but shouldn't feel coarsen. The best is to be prepared with a list of intelligent questions to expose to the physician we are visiting. They usually converse more and spend more time with a patient that knows a little about the issue.

    Here is an idea you can modify to fit your case;
    http://www.cancer.net/navigating-cancer-care/diagnosing-cancer/questions-ask-your-health-care-team

    A practical guide to prostate cancer diagnosis and management;

    http://www.ccjm.org/index.php?id=105745&tx_ttnews%5Btt_news%5D=365457&cHash=b0ba623513502d3944c80bc1935e0958

    Best,

    VG

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    edited March 2017 #15

    Chuck to a pathway

    Cushions,

    We all will cheer at your negative diagnosis. Apart from the PSA, nothing of your shared info is suggestive of prostate cancer. All these would be looked differently if anybody in your close family (father mother, brother) has or had prostate or breast cancer. These bandits use the same genes to proliferate turning the holders at higher risk for contamination. In any case, your condition needs to be addressed by an urologist and the PSA level warrants that.

    I image you being that polite gentleman taught to follow the cradle-to-grave system of British health care without contesting but you need to take the leadership of your health. Nor the GP or anyone else will know exactly what is happening or even bother to find problems with such affinity. You need to know the basics, inquire when in doubt, act on the problem and relax once satisfied.

    Typically, the GP is the first person we meet. He tries to identify the reason of the problem (that took us to him) and then he moves us up to a specialist (in an hospital). This new guy is then our pivot within the system through whom we have access to real health care. This specialist can also attend your other requests for consultations in different specialties (gastro for instance). You need to use diplomacy when talking with them but shouldn't feel coarsen. The best is to be prepared with a list of intelligent questions to expose to the physician we are visiting. They usually converse more and spend more time with a patient that knows a little about the issue.

    Here is an idea you can modify to fit your case;
    http://www.cancer.net/navigating-cancer-care/diagnosing-cancer/questions-ask-your-health-care-team

    A practical guide to prostate cancer diagnosis and management;

    http://www.ccjm.org/index.php?id=105745&tx_ttnews%5Btt_news%5D=365457&cHash=b0ba623513502d3944c80bc1935e0958

    Best,

    VG

    Cheers

    Cheers

    You are correct - just the numbers (flatlined on the borderline) and everything else can be explained away by old age amd imagination :D

    Prostate and breast cancer has never been a think on either paternal or maternal line.

    Will keep you posted!

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    edited March 2017 #16
    So GP says he is booking an

    So GP says he is booking an MRI - the clinic say I have a biopsy (I started writing autopsy for a moment - triggered, hell yea) and I have not had any consultation or disussion about that or the risks. No one knows anything.

    As always the finger of blame points to the other party and I am the one having to sort it it.

    FFS!

  • Will Doran
    Will Doran Member Posts: 207
    edited March 2017 #17
    T Levels

    H-W-S-O-C

    I'm not sure about your concern with your Testosterone levels.  The lower the testosterone levels the slower prostate cancer grows / spreads. Do I understand that your level is in the 9 - 12 range?  If so that's where they want your testosterone levels after treatment to stop the spread of any cancer left after treatment.

    When Diagnosed, I had no symptoms of Prostate Cancer.  It was found by accident when I had an internal bleed.  My PSA was 69, and my Gleason score was 3+4=7. I had Robotic Surgery in December of 2013. One lymph node was involved and 40% involvment of the prostate.  I was diagnosed as a Stage pT3bN1.  I was treated as if I were a Stage 4.   I was treatred with Lupron and Radiation (8 Weeks) as clean up.  I was on the Lupron for two years.  They had my Testosterone level at 11, which is where it had to be to stop any spread of cancer cells left after the surgery and radiation.  Right now, My testosterone level is back up to 380, which is still concidered low. Normal is something like 250 - 1,100.   My PSA was at <0.010, and has now come up a little to 0.145.  If my PSA continues to rise then I will have to go back on Lupron, full time or intermitent,  for as long as that works to keep my testosterone low to stop the redevelopment of any cancer. 

    So, If I understand what you are saying, having your "T" Levels at 9 - 12 should work in your favor.                                                                                    I'm not a doctor and can only tell you what I have learned over the past 3 years as I've been fighting this battle.

    Good luck, get many opinions and study and learn all you can, so you can make the decisions that you think are right for you.

    Love, Peace and God Bless,

    Will                                                                                                                                                                                     

     

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    edited March 2017 #18
    Hi Will

    Hi Will

    My concern was only that very low T can be a marker for more aggressive PCa. Low probabilty so going to not worry aboyt that.

    As for T and PCa my understanding is that the latest thinking is that there is less of a relationship between T and PCa than first thought as the original Higgins study was done on castration rather than managing T levels.

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    Update - GP says *is* MRI

    Update - GP says *is* MRI whatever they say. Smoke me a kipper.

  • Will Doran
    Will Doran Member Posts: 207
    edited March 2017 #20
    Next Move

    H-W-S-O-C

    My next move, when the time comes that Lupron, Eligard, etc. Stops working to lower my "T" Levels, is Orchiectomy.  We have already talked about that and I had resigned myself to that.  I was fully prepared to have that surgery, two years ago, But my doctors talked it over and we decided to wait and try the cycle we are on now, before doing the surgery.  They talked about the Testosterone levels and, to cut and paste your statement, that there is less of a relationship between T and PCa than first thought as the original Higgins study was done on castration rather than managing T levels.  There are other medications that we will try before we go into the surgery.

    Good Luck

    Will

  • RobLee
    RobLee Member Posts: 269 Member
    Orchiectomy

    FWIW my PCa appeared just about one year after losing my right teste (to be more exact, my PSA began to double).  By all rights, my T level had probably taken a dive. Not sure one really has much to do with the other.