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Not a survivor (yet) but seeking advice

hewhositsoncushions
Posts: 261
Joined: Mar 2017

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

 

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

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
Posts: 261
Joined: Mar 2017

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!

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

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.  

hopeful and opt...
Posts: 2218
Joined: Apr 2009

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. 

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

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
Posts: 261
Joined: Mar 2017

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?

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

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.

DavidH1958
Posts: 4
Joined: Mar 2017

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. 

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

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
Posts: 261
Joined: Mar 2017

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

hewhositsoncushions
Posts: 261
Joined: Mar 2017

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's picture
Max Former Hodg...
Posts: 3228
Joined: May 2012

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
Posts: 261
Joined: Mar 2017

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

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

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
Posts: 261
Joined: Mar 2017

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
Posts: 261
Joined: Mar 2017

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
Posts: 207
Joined: Sep 2015

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                                                                                                                                                                                     

 

sleepless in california's picture
sleepless in ca...
Posts: 2
Joined: Sep 2017

Will, how long ago was your diagnosis and surgery?   What does your urologist tell you in terms of life expectancy?   Especially with lymph involvement.   My husband looks like he will be much like you, although he hasn't had surgery yet.   His stage so far: T1C (doesn't mean much I know).   Gleason 4+3 = 7, PSA 19.   He's between intermediate and advanced and his doctor is giving him a 10% chance that his cancer is stage IV.  The stats look so bad.  

How are you responding to the hormone treatment?   Remember, the cells that kill you don't respond to Lupron nor do they produce PSA levels.  Have you read Walsh's book?

hewhositsoncushions
Posts: 261
Joined: Mar 2017

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
Posts: 261
Joined: Mar 2017

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

Will Doran
Posts: 207
Joined: Sep 2015

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's picture
RobLee
Posts: 259
Joined: Feb 2017

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.

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

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
Posts: 261
Joined: Mar 2017

@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's picture
Max Former Hodg...
Posts: 3228
Joined: May 2012

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
Posts: 261
Joined: Mar 2017

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
Posts: 2
Joined: Mar 2017

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 opt...
Posts: 2218
Joined: Apr 2009

....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.

sleepless in california's picture
sleepless in ca...
Posts: 2
Joined: Sep 2017

Kim, my husband and I belong to Kaiser and Joe will be undergoing surgery there soon.   We were assigned Dr. Choy, who is supposed to be quite good with robotic surgery.   We'll see him tomorrow.  There's little choice here, and I'll ask him about his years of experience.   Joe's cancer is intermediate to advanced so this will be critical for him.

Are you in Lake Forest?   We're in Laguna Woods.

hopeful and opt...
Posts: 2218
Joined: Apr 2009

I also live in Southern CA. There is a local support group that i highly recommend that meets at First Presbyterian Church, 838 North Euclid Street, Fullerton, CA 92832.

The name of the group is Prostate Forum of Orange County. 

The next meeting is September 28. There will be a speaker at 7 PM, however, come at 5 PM since there is a orientation group for newly diagnosed.  

http://prostateforum.org/

This is a great forum which i attend from time to time, where you and your husband can receive information about local resources. I might be there as well.

.....................................

suggest that you post to start a new thread with all pertinent information about your husbands case, so you can receive input that is directed to your husband, and not disturb this current thread that is directed to the benifit of   the original poster

 

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

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 would 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
Posts: 261
Joined: Mar 2017

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
Posts: 1
Joined: Mar 2017

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!

 

hewhositsoncushions
Posts: 261
Joined: Mar 2017

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
Posts: 261
Joined: Mar 2017

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
Posts: 1013
Joined: Mar 2010

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 dick 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
Posts: 415
Joined: Jun 2015

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
Posts: 261
Joined: Mar 2017

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's picture
RobLee
Posts: 259
Joined: Feb 2017

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's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

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
Posts: 261
Joined: Mar 2017

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's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

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 opt...
Posts: 2218
Joined: Apr 2009

...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.

hewhositsoncushions
Posts: 261
Joined: Mar 2017

Went in for second biopsy and asked about detailed breakdown of ASAP results by core and was shown that they only record left and right and not coer by core so information was a but vague. When I had the second biopsy itself the (lovely and helpful) nurse showed them to me. Two pots full of small white threads with a red end - no way of telling them apart. Hey ho. Will get more when I see them for results next week.

Biopsy itself was worse than the first on which had little discomfort and virtually no side effects. I bled like a stuck pig on the way out and had to go back for an afternoon of obs. Slight tachy and BP up and down but eventually stabilised. Day after was just as ropey so taking it REALLY easy. I suspect this was a shock / stress reaction rather than an actual acute critical event but it was so not nice.

Reviewed what I did during that time and realised:

A) Probably not enough carbs in my diet during this / not eating regularly enough (blood sugar low)

B) Being too energetic after two biopsies is a bloody stupid idea

C) My hind brain is a lot more stressed than it is letting on to my fore brain. Logically I feel that there is nothing to worry about re. the situation and side effects but that little lizard at the back of the head isn't having anhy of it.

So I am going to rest, be kind to myself and take it far steadier than I was.

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

That is a good idea. Take a rest and wait. The results will unlock the mystery.

Regarding the biopsy report, I think that the nurse told you what is writen in the urologist's request. Typically it says; A, B, C Right and E, F, G left. But the pathologist report will detail what was received at the laboratory (the number and length of each sample/core), and what was found in each core. These information is in the hands of your urologist (filed) or recorded in the computer's files of each patient.

I wouldn't bother with the results of the initial Biopsy (negative) but I would want to know the details of the second one. Surely this will be testing different areas of the prostate.

Best

VG

hewhositsoncushions
Posts: 261
Joined: Mar 2017

Hi

Yes - rest, plenty of fluids, good food and a little liquid cheer - that is my prescription.

I have the review middle of next week.

Cross fingers...

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