Not a survivor (yet) but seeking advice

2

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,581 Member
    Disease progression and aggressive cancer are different matters

    Cushions,

    You are correct, the original Higgins study was done on castration rather than managing T levels. Dr. Abraham Morgentaler study on testosterone provided a series of reports from oncologists because it contradicted their opinions on hormonal treatments. However, Morgentaler fidings related to the risk of having PCa when T is low than when it is high. His "low level" in terms of total T in circulation does not correspond to the levels considered and recommended by the Endocrine Society. In other words, these opinions on testosterone levels have no meaning when trying to classify a cancer as aggressive or indolent. It may be influential when considering the progression of the disease.

    All the doctors involved in PCa rsearches agree that androgens (T in male) is what drives prostate cancer to survive and proliferate. But it is not clear if exogenous testosterone (injected) is as well involved in disease progression as it is endogenous testosterone. Zero T (castration) surely will turn PCa indolent and this bandit will try all means to survive to the extent of starting to produce its own androgens (Darwin principle on survival of the species).

    Your T is low but above the normal low limit, which level has been fixed in basis on several health factors and symptoms. If for any reason you are pondering T injections to get you out of menopause-like symptoms I would suggest you to consider estrogen patches more than TRT if PCa is diagnosed.

    Try all means to get a copy of the MRI report. We can help you to understand the results.

    VG

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    edited March 2017 #23
    @Will and RobLee

    @Will and RobLee

    Sorry to hear about your challenges. I hope you kep on fighting! I am as confused as you are about all this :)

    Hi VG

    This is a fascinating topic - I am not sure I am reading the same as you about T driving proliferation of PCa. Quite a lot of the more recent studies appear to show no correlation and some people argue that even very low levels of T are enough to feed PCa anyway and that high(er) T ay be of more benefit fighting cancer and for general health and longivety. I think there was something about the difference between feeding and starving. Once I get the tests done I am going to engage with my GP, T specialist and urologist to see what is best to do but I do need something to get my balls back out of wifey's purse :D

    http://www.cancernetwork.com/oncology-journal/new-concepts-regarding-testosterone-and-prostate-cancer-breath-fresh-air was the report that summarised this.

    Also https://www.sciencedaily.com/releases/2016/06/160621112103.htm.

    Caveat emptor, big pharma :D

    Not sure about gels - I have lurked on various T forums and they seem to have a lot of side effects whilst being less effective.

    Will keep you posted!

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,767 Member

    @Will and RobLee

    @Will and RobLee

    Sorry to hear about your challenges. I hope you kep on fighting! I am as confused as you are about all this :)

    Hi VG

    This is a fascinating topic - I am not sure I am reading the same as you about T driving proliferation of PCa. Quite a lot of the more recent studies appear to show no correlation and some people argue that even very low levels of T are enough to feed PCa anyway and that high(er) T ay be of more benefit fighting cancer and for general health and longivety. I think there was something about the difference between feeding and starving. Once I get the tests done I am going to engage with my GP, T specialist and urologist to see what is best to do but I do need something to get my balls back out of wifey's purse :D

    http://www.cancernetwork.com/oncology-journal/new-concepts-regarding-testosterone-and-prostate-cancer-breath-fresh-air was the report that summarised this.

    Also https://www.sciencedaily.com/releases/2016/06/160621112103.htm.

    Caveat emptor, big pharma :D

    Not sure about gels - I have lurked on various T forums and they seem to have a lot of side effects whilst being less effective.

    Will keep you posted!

    T

    In the diagnosis of virtually every man here, T-levels were irrelevant to their discussions.  Later, with metastatic disease or during HT, it does become relevant.

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    Max

    Max

    I agree T is irrelevant diagnostically. I got that :D

    What I am simply saying is that the latest research I have read suggests that artificially elevating T levels from low to normal when someone has PCa may not have a detrimental affect on risk factors / metastising / growth / outcome so it may be safe to go on TRT regardless now whereas prior to this research it would have not been recommended and indeed chemical or surgical castration would be a consideration. That is all I am saying - there appears to be a change in the wind with regards to T levels and PCa as a whole. Since like many I do have low T and may have prostate issues if this is true then this is a better situation for me because otherwise I would have to not go on TRT which would really suck whether I was on passive monitoring or undergoing any form of treatment. Quality of life due to something you do have is just as important a condideration as safeguarding against something you may have. I will be researching further with my specialists and will post what I find.

  • kim lakeforest
    kim lakeforest Member Posts: 1
    edited March 2017 #26
    Experience Robotic Prostate surgeon at KaiserSouthern California

    Anyone knows of any good Experienced Robotic Prostate surgeon at Kaiser Southern California ? Or how to check for one from Kaiser list ? Does Kaiser let us check the back ground and credentials of their surgeons ?

    Thank You so much for any comment

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member

    Experience Robotic Prostate surgeon at KaiserSouthern California

    Anyone knows of any good Experienced Robotic Prostate surgeon at Kaiser Southern California ? Or how to check for one from Kaiser list ? Does Kaiser let us check the back ground and credentials of their surgeons ?

    Thank You so much for any comment

    Kim, please start a new thread

    ....with the history of your case, so inputs can be given.

    PS I live in So Cal as well, and can direct you to support groups where this will be known, but please start a new thread so as not to infringe on the current one.

  • VascodaGama
    VascodaGama Member Posts: 3,581 Member
    edited March 2017 #28

    Cushions,

    I would very much appreciate if you dedicate time in “exploring” the intrigues of the Testosterone in regards to the values of T in PCa therapies, and post your findings. Not many here know the details or have enter into such theme exactly because of the lack of existing evidence to point to the contrary of what is informed by our oncologists.

    In fact, my above post resumes to what is known at the moment. The Resolution 8 set by Dr. Luiz Torres in the link you provide, identifies these facts and ends by saying “…Although large, long-term studies are lacking, the available evidence does not support increased PCa risk with T therapy ….”. In other words doesn’t support either way. The study of the 1966 Nobel Prize winner Dr. Charles Huggins regarding hormone dependent cancers is still the only valid evidence.

    By experience, I had low levels of testosterone (close to yours) in 2000 (50 years old) but such did not affect my drive for sex (very active always ready for the fight) nor my fitness. The bandit was there too producing a substantial amount of PSA serum of 22.4 ng/ml (at PCa diagnosis). When recurrence was verified after radiotherapy in 2008, I engaged in researches on hormonal therapies. I read many clinical papers on drugs and on their effects on Pca. Chemical castration (T lower than 30 ng/dL) drove the PSA to undetectable levels and these climb out of undetectable as soon as my testosterone increased surpassing the 50 ng/dL (clinical castration level). From there T climbed to a maximum of 450 and then plateaued at the 300 range. The PSA also plateaued at the 1.5 ng/ml level.
    I wonder if any additional climbing of my endogenous testosterone w
    ould influence the bandit and make the PSA to climb further too.

    You are correct. The ones patronizing the above Resolutions are all tainted by the big pharmas (refer to Potential Competing Interests in the same article). We can expect a number of newer TRT drugs on sale pretty soon.

    Best,

    VGama

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    edited March 2017 #29
    VG - that is very much my

    VG - that is very much my intent - I will engage with my specialists and research that way. That being said, it is important that I don't cloud the fact that this is a prostate cancer forum not a T one so please call me out if i get tunnel vision :D

    As you say, the jury is out, the evidence swings both ways and vested interests are in play, but that is the case with all medicine and indeed all scientific research, after all tenure and grants are what matters :D

    Cheers!

  • Deacon1007
    Deacon1007 Member Posts: 1
    SurvivorPost op biopsy showed it to be nine

    I, of course do not know your age but, I was 61 when I was diagnosed.  I, like you no doubt, was given a short list of treatment possibilities from surgery to "wait and watch".  I wanted no part of having this disease in me and immediately opted for the surgery.  There is a scale (sorry but I can't remember the name) that runs from 1 to 10 With 10 being the worst.  Post op biopsy showed mine to be a 9.  They also removed lymph glands in the area just as a precaution.  Seven years cancer free and counting.  Be sure to share your concerns with your family and cancer survivors when possible.  Oh, and be sure to pray!

     

  • DavidH1958
    DavidH1958 Member Posts: 4
    edited March 2017 #31

    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?

    Hi

    hewhositsoncushions, Those urinary symptoms are not an age related issue. You are only 50 for gods sake, not 70 or 80. I think you should be persuing this like your life depended upon it (it does). I was 52 when I was diagnosed with PC. I sought out a urologist because I had two urinary symptoms not normal to a 50 year old. Frequency where I had to get up multiple times a night to go pee. Urgency that was like a five alarm fire. I would run to the bathroom as fast as I could all the while not sure I would make it there before peeing in my pants. Six months of that was driving me nuts. I told my GP who sent me to a urologist. PSA of 5. This was followed by a DRE where he found something firm he did not like. Then the biopsy had 6 out 12 cores cancerous with a Gleason score of 7 (3+4). My staging was T2c.  From my first discussion with my GP to RP was 6 months. Morphology of the prostate on removal was T3a. You are too young to be diddling around with this. 

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    edited March 2017 #32
    Hi Deacon

    Hi Deacon

    Thanks for commenting - sounds like you are doing great :)

    I am early 50's.

    You are talking about the Gleason scale when you mentioned the 9, which from what I have seen here is more severe than not severe.

    I've finally talked to a urologist (having orignally been booked cold for a biopsy with no preamble at all, which I said Noeeeoowwww to!) and am due to have an ultrasound assisted biopsy shortly. Will have a better idea of the lay of the land then.

    Don't worry about me praying - I argue with God on a daily basis :)

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    edited April 2017 #33
    Quick update

    Had TRUS biopsy on Monday after all the toing and froing to ensure informed consent.

    Procedure not as grim as made out (was making Carry on Doctor jokes throughout) but side effects a bit.... lets just say I know how women feel wrt TOTM now!

    Results discussion due in a few days.

    Scan showed prostate was normal size and seond DRE fine.

    I asked about penis shortening after RP and the consutant said that was not really an issue. Hmmmm....

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member

    Quick update

    Had TRUS biopsy on Monday after all the toing and froing to ensure informed consent.

    Procedure not as grim as made out (was making Carry on Doctor jokes throughout) but side effects a bit.... lets just say I know how women feel wrt TOTM now!

    Results discussion due in a few days.

    Scan showed prostate was normal size and seond DRE fine.

    I asked about penis shortening after RP and the consutant said that was not really an issue. Hmmmm....

    Penis shortening not an issue ??

    Don't believe him.  That's what one urologist said to me.  He actually said the penis does not get shorter and technically he is/was correct.  But although this may an issue for the urologists, it definitely is for all of the men who have had surgery and have been willing to admit to it.

    It is physiologically IMPOSSIBLE for the penis NOT to appear shorter following surgery.  The degree of shortening in appearance will vary but will generally be around 1" of flaccid length because that's about the diameter of the prostate, which they always say is about the size of a walnut but the size of walnuts varies.

    The prostate is positioned between the top of the penis and the bottom of the bladder.  There are urinary sphincters located at each end which if damaged or weakened by surgery is at least one reason why men always experience incontinence following surgery -- usually temporarily until sphincter strength recovers but sometimes permanently.

    In any event, when you take the prostate out by means of surgery, a gap is created and the top of the penis has to be connected to the bottom of the bladder to fill the space causing the shortened appearance of the penis.

    That is a fact.  Whether this an "issue" for the man concerned depends on the man but there is no doubt that, although technically your **** will not BE shorter than it was before surgery, it will defintely "appear" shorter after surgery than it did before.

    That mattered A LOT to me because my equipment when flaccid was/is not that long to begin with.  Every inch (or fraction thereof) counted to me and it was one (of many reasons) why I chose to avoid surgery.

     

  • Clevelandguy
    Clevelandguy Member Posts: 806 Member
    edited April 2017 #35
    Porn star?

    Hi,

    Caution:  Young children & highly religious people do not read this, LOL..................

    Unless you are going to be a Porn star or nude model the length of you non erect penis should not be an issue.  When you get an erection the same amount of tissue in your penis is still there after surgery.  Your uretha will stretch an inch or two so what's the big deal?  Some people try and scare other people away from surgery because of this point.  As a post RP survivor it's the most distance thing that should concern you.  Don't worry your partner will not leave you or your dog will not growl & run away because you had a RP.  A very weak arguement in my opinion for not having a life saving surgery.Wink

    Dave 3+4

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    So I saw the Urology

    So I saw the Urology consultant and got "it's good news but..."

    ASAP cells detected so have to have another biopsy to refine the diagnosis, ith possibly an MRI to follow.

    He says that it is likely to be either nothing (60%) or low level PCa (40%) as anything serious would have been picked up by now.

    Talk about needing the patience of Jove!

  • RobLee
    RobLee Member Posts: 269 Member
    Patience of Jove!

    Typically they like to have 6-8 weeks healing between procedures. I assume that would also be between biopsies.

    It's good that you seem to have either something small or perhaps nothing. You dodged the bullet.

  • VascodaGama
    VascodaGama Member Posts: 3,581 Member
    ASAP cells

    Cushions,

    ASAP cells can go either way, benign or cancerous. It depends if other cell structures (in benign environment) are missing. Some pathologists are suspicious on these atypical acinar proliferations found in biopsies because of the high percentage (40%) of ASAP cases that turn into positive cases after repeating the boring at close tissue. In fact one core (⌀ 1 mm x 2 cm) draws only about 1/800th of the gland. It easily can miss cancer.

     I would appreciate if you share the complete report of the pathologist: How many cores/needles were taken? Did they find hyperplasia or calculi that could justify the high level of PSA? In which region did the ASAP exist?

    Can you substantiate on the urologist's opinion That "... anything serious would have been picked up by now". What kind of image (color doppler ?) was used or data that leads him to state the above?

    I hope this suspicious is found to be benign.

    VG

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    edited April 2017 #39
    Hi

    Hi

    Not had any of that fine level of detail first time round. First time I had the diagnostic consultant who was mire laid back. This chap is a surgeon and more old school I suspect. I'll grill him nest time. Was too stressed and nervous to do it properly this time.

    The % numbers you mention tie in with what he said.

    The biopsy was a TRUS one, 12 cores. Prostate was standard size and shape. He did not mention any other diagnostic considerations as to why the PSA was high.

  • VascodaGama
    VascodaGama Member Posts: 3,581 Member
    Stressed and nervous to do it

    So far you have not been diagnosed with Pca. Even if such becomes the case you have time to educate on the details and then decide on what to do next. PCa takes a sluggish pace to develop and progress to affect the holder. Other similar bandits, like breast cancer, are much faster and risky. Everybody gets nervous in front of the doctor when cancer is the subject. In any case one does not need to decided in just one visit. Listen and take notes, and then schedule the next appointment in a way that you have time to digest what was told.

    Now it is time to relax and enjoy life as usual.

    Best,

    VG

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member

    Stressed and nervous to do it

    So far you have not been diagnosed with Pca. Even if such becomes the case you have time to educate on the details and then decide on what to do next. PCa takes a sluggish pace to develop and progress to affect the holder. Other similar bandits, like breast cancer, are much faster and risky. Everybody gets nervous in front of the doctor when cancer is the subject. In any case one does not need to decided in just one visit. Listen and take notes, and then schedule the next appointment in a way that you have time to digest what was told.

    Now it is time to relax and enjoy life as usual.

    Best,

    VG

    contact the doctors office

    ...and ask them to send you a copy of the pathologist report, so, you can post the results if you wish. Additionally ask for a copies of all medical information about your case, so it will be available as you pursue opinions from various specialists.