Any prostate cancer survivors out there. Little help

[dilligaf]

My PSA numbers have slowly risen to 7.6 these past several years.  A biopsy showed 4 cores positive for Gleason 6 and Gleason 7 cancer.  The doctors are recommending Intensity Modulated Radiation Therapy (external beam therapy).  Have any of you had any experience with this therapy and what was the outcome. Thanks.  :BEER:
Matt

[jrt]

IMRT is hell of better than previous methods.  I didn't have prostate cancer, but went through quite a bit (understatement) of IMRT. 
The good thing about is that the beam is shaped so that radiation overlaps with the tumor, but rapidly drops off outside the target area.  The discrimination between tumor and normal tissue (that it avoids) can be as small as a few millimeters.  Usually the source is moved around the patient so that beam enters/exits from several (10 or so) directions to form a three-dimensional overlap.  There are a number of videos on youtube that show how the beam is shaped.
Of course the surrounding tissue still gets affected by the beam to some degree- shaping the beam minimizes unnecessary radiation in two dimensions.  Moving the beam keeps collateral exposure down in the third.
The effects of radiation are cumulative.  The first 3 or 4 treatments won't seem like they are doing anything.  Depending on how sensitive you are, you will become progressively more tired and weak as the treatments continue.  If you are doing chemo and radiation, the the results are multiplicative.
BUT- force yourself to keep eating and keep your strength up.  You don't want a feeding tube.  Drink water.  Drink and drink and drink.  It helps purge your body of accumulating toxins, particularly if you are taking chemo, and just helps the healing process.  Drink, drink, drink and drink more water.
Damage to the tissues continues past the last treatment- I felt worst about 3 weeks after the last one.  The nurse said that the 'radiation stayed in you'.  That's bs- I'm a scientist and quite familiar with radiation.  It is the slow nature of cellular division that makes it seem like the damage keeps coming after the radiation stops.
Recovery depends (again) on the individual.  It can take two years to get back to baseline.  I'm over a year out and still have a fair amount of damage- probably never get back to my old self.  But I am upright ;).

Do some research- which organs are going to be exposed?  How much (usually given in Grays or Gys) is each dose?  How many doses?  What is the cumulative dose?  How many Gys before specific tissues are damaged? For example, how much radiation can the small intestine take before irreversible damage?  You'll need to talk to your radiation oncologist to get an idea of the treatment plan and which organ systems might be affected.
If you are scheduled to get a large cumulative dose, then plan now to take some time off work at the end and just past the end of treatment.
And- don't stop treatments.  They seem like overkill, but if you let one cancerous cell survive...you get to go through the whole thing again.

I don't know if it did me a bit of good, but I drank a lot of  green tea while having therapy.  It supposedly has good anti-oxidant properties (radiation is oxidizing).  I can't stand it now, so also be careful of aversion conditioning. 

Good luck!

[lucydad]

Matt,

I will say prayers for you buddy.  Had my "welcome to 60" physical a week ago and doc noticed a bit hard prostate.  Did the blood work etc and fortunately blood score PSA was one.  I have no real symptoms.  My dad passed of prostate cancer complications.  My only advice is to get the best docs available and stay positive.

blessings,

Lucydad and the poodles

[oceanluvr]

My 70 some year old neighbor is doing great and it has been 10 years since his procedure   ;-T

[Sasquatch Jim]

  Izzat where they put the phazers on stun and shoot you in the fundament?

[PeteS]

Not me but a best friend just finished therapy. He had minimal side effects throughout the procedure and has been declared cancer free. Medical technology has come a long way.

Pete

[V7Record]

I go for a biopsy next week, my PSA has been slowly rising and is up to 5.4 now.  I'm just concerned now with how bad the biopsy will be.  :-\

[dilligaf]

The biopsy will take about 10 or less minutes and isn't all that big a deal.  :BEER:
Matt

[guzzi4me]

I go for a biopsy next week, my PSA has been slowly rising and is up to 5.4 now.  I'm just concerned now with how bad the biopsy will be.  :-\

As I have posted before my wife nagged...errr...sug gested that I go and have blood tests taken because it had been
a long time. Didn't want too because I felt fine.

Her insistence saved my life.

My PSA was 16.5. Went in for a biopsy and 10 of 12 cores showed cancer.

I am only 55 with no family history of prostate cancer.

If this cancer is caught early, like yours, treatment options are many. My only option was prostate removal.
Just got my first follow-up blood test and my PSA is undetectable. I hope it stays that way!

Everyone PLEASE have blood work done so if anything is amiss it can be dealt with properly and possibly
without prostate surgery. This cancer is occurring earlier in men and usually has no symptoms.

This board is not only great for Guzzi stuff (THANKS Luap!!!!) but also for moral support with many
different issues.

The biopsy procedure really isn't that bad...just do it and then you and your Doctor can decide a course of
action.

Ride safe and often,

Jeff

[Steve Cas]

Interesting topic,

Has anyone had any success using supplements that are designed to reduce your prostate?
There a lot of over the counter options. Just had my annual and was told the prostate was "slightly" enlarged.

Good luck to all who are going through this.

[Orange Guzzi]

I have not been diagnosed with cancer, but have other prostate problems.  The doctors told me it is most likely cause by brain injuries/head trauma (pituitary gland).  The doctors told me I can take medicine, feel better and die or I can not take medicine feel bad and die.  I laughed and said, so I am going to die?  The doctor said yes.  I told him I was going to get a second opinion.  The next doctor told me the first doctor was correct, I was going to die.  As I have gotten older, 56, I have realized and been told by doctors that living a extremely active life style actually shortens a persons life.  As I have read here on WG, many of us are/were extreme risk takers. I have 5 brothers.  Between them and all of our friend through out the past years, we have lived up to many dares that have left many life long scars.  I have preached to young people that getting hurt doing something fun will lead to suffering in the future.  Just the other night, I almost killed myself while riding my motorcycle too fast.  My family would have been extremely upset if I were to kill myself doing what I enjoy after spending many thousands of dollars at the doctors treating other heath issues.  Good luck, continue to enjoy life, it yours first and take time to understand your condition, keep us updated. 

[StuCorpe]

I had a very low PSA score but the Dr. found a problem with digital exam.  That always seems to work.  Had prostate remove 12 years ago, still showing zero on PSA test last year.  Not going to have another PSA test done ever.

[centauro]

My PSA numbers have slowly risen to 7.6 these past several years.  A biopsy showed 4 cores positive for Gleason 6 and Gleason 7 cancer.  The doctors are recommending Intensity Modulated Radiation Therapy (external beam therapy).  Have any of you had any experience with this therapy and what was the outcome. Thanks.  :BEER:
Matt

Matt,
when I got diagnosed 10 years ago, I was 50 and my Gleason scores were very similar to yours. What your doctors should have been concerned is the "doubling velocity" of your PSA scores. If the number doubled in value in a year, the odds are that the cancer is aggressive enough to be treated.
The choice of treatment should be decided only by you after obtaining enough info about your situation. This means that you should absolutely seek a second, or even third opinion before you decide on your treatment, or even to consider "active surveillance" instead of treatment.
Has your cancer metastasized (expanded) beyond the prostate edges already? in this case, surgical removal is probably advisable, with possible radiation later if the PSA readings show a tendency to rise following surgery.
Mine was right at the edge, and just to be sure, I had it removed. I fired a couple of urologists before I decided who was going to treat me. Realize now that there are 3 flavors of oncologists out there: radiation oncologists want to nuke you in different ways (including IMRT), surgical oncologists live by the knife and want to cut you open, while medical oncologists want to treat you with poisons. No matter what treatment you choose, they all have side effects.
As of today, I have not had any detectable PSA readings. Your numbers are not high enough right now to rush to immediate treatment.
I highly recommend you carefully read the book "A Primer on Prostate Cancer: The Empowered Patient's Guide " by Dr. Stephen B. Strum, Donna Pogliano before you consult other doctors.
Wishing you the best, and keep us posted.... we are all pulling for ya...

Val Barone

[redrider90]

I had a very low PSA score but the Dr. found a problem with digital exam.  That always seems to work.  Had prostate remove 12 years ago, still showing zero on PSA test last year.  Not going to have another PSA test done ever.

It is not a good idea to stop having PSA tests. I have belonged to a couple of groups of PCa survivors. It is not that unusual to see recurrence 10-15  years after treatment.
I STRONGLY suggest you never stop having tests. If you had a recurrence it might be very  treatable if caught early. One is never cured of PCa until they die from something else. Which reminds me I am over due for my tests.

[redrider90]

My PSA numbers have slowly risen to 7.6 these past several years.  A biopsy showed 4 cores positive for Gleason 6 and Gleason 7 cancer.  The doctors are recommending Intensity Modulated Radiation Therapy (external beam therapy).  Have any of you had any experience with this therapy and what was the outcome. Thanks.  :BEER:
Matt

I assume you have  12 core biopsy. How much cancer was found in each core. I am curious as to who has recommended IMRT. Most men have had biopsies and the urologist push surgery as the only option even at age 75. There is NO such thing as surgery is the only option.  I had Image guided 4D IMRT radiation for a G-7. I moved to Florida for 3 months and was treated at Dattoli cancer center:   http://www.dattoli.com/prostate-cancer-treatment-options/what-is-4d-ig-mrt/i/22  They specialize in PCa  using their own adaptation called DART. I also combined hormone therapy with radiation which can improve the outcome.  I am not suggesting you need what I had. You do not provide much information and maybe if you like you can PM and take this off the list; unless the guys here are really interested in it. I know a couple of guys on the list and they may have PM you already.
Whatever your treatment option make sure you try to are treated by an experienced clinician. A G-7 is considered a borderline aggressive cancer. Short of truely aggressive G-8-G10 but more aggressive than "moderate" G-6.
There is a great website YANA http://pub2.bravenet.com/forum/static/show.php?usernum=154144579&frmid=42&msgid=0 that has the stories of many men. It is worth looking their stories.
AT age 75 Active surveillance is as possible option depending on the presentation.

[redrider90]

Matt,
when I got diagnosed 10 years ago, I was 50 and my Gleason scores were very similar to yours. What your doctors should have been concerned is the "doubling velocity" of your PSA scores. If the number doubled in value in a year, the odds are that the cancer is aggressive enough to be treated.
The choice of treatment should be decided only by you after obtaining enough info about your situation. This means that you should absolutely seek a second, or even third opinion before you decide on your treatment, or even to consider "active surveillance" instead of treatment.
Has your cancer metastasized (expanded) beyond the prostate edges already? in this case, surgical removal is probably advisable, with possible radiation later if the PSA readings show a tendency to rise following surgery.
Mine was right at the edge, and just to be sure, I had it removed. I fired a couple of urologists before I decided who was going to treat me. Realize now that there are 3 flavors of oncologists out there: radiation oncologists want to nuke you in different ways (including IMRT), surgical oncologists live by the knife and want to cut you open, while medical oncologists want to treat you with poisons. No matter what treatment you choose, they all have side effects.
As of today, I have not had any detectable PSA readings. Your numbers are not high enough right now to rush to immediate treatment.
I highly recommend you carefully read the book "A Primer on Prostate Cancer: The Empowered Patient's Guide " by Dr. Stephen B. Strum, Donna Pogliano before you consult other doctors.
Wishing you the best, and keep us posted.... we are all pulling for ya...

Val Barone

Val,
I agree with much of what you have said except for the meaning of "metastasized (expanded) beyond the prostate edge. When the cancer has expanded/extended beyond the edge of the capsule it is called extracapsular extension. It means the cancer is outside the capsule. The extension is measured in mm and can be as little a 1 mm or quite a lot like 12 mm ECE. Metastatic cancer is when it has spread to another area like bones or liver or more rarely like lungs and brain. ECE is not uncommon but it usually means that someone does not do active surveillance. PSA doubling time, velocity and PSA density are all important values. If he had 4 or 12 cores with low volume cancer with a slow doubling time one could consider AS as an option. John Hopkins has an AS program but they consider a G-7 a non starter and do not allow men in their AS program with a G-7. I had a G-7 and waited 5 years before being treated.

[dilligaf]

Yes, it was a 12 core biopsy with four of the samples positive. The values were 3,3,3 and 4.  Not sure I understand the system. The cancer appears to be restricted to the prostate.  Digital exams have, over the years, reviled nothing amiss.   Currently, at the recommendation of a friend with many years in the medical profession and my  primary care physician we are seeking a second opinion.  Also my prostate is 58 grams(?) where normal is about 30 making it to large for seeds without shrinking the prostate first. Active surveillance is a consideration but the G 7 presents a concern. The current physician has ruled out surgery.  I'll make a decision sometime this winter.

One of the guys I have ridden with when I visit in Texas was diagnosed with prostate cancer 15 years ago.  He is 92 and still riding.   :BEER:
Matt

[redrider90]

Yes, it was a 12 core biopsy with four of the samples positive. The values were 3,3,3 and 4.  Not sure I understand the system. The cancer appears to be restricted to the prostate.  Digital exams have, over the years, reviled nothing amiss.   Currently, at the recommendation of a friend with many years in the medical profession and my  primary care physician we are seeking a second opinion.  Also my prostate is 58 grams(?) where normal is about 30 making it to large for seeds without shrinking the prostate first. Active surveillance is a consideration but the G 7 presents a concern. The current physician has ruled out surgery.  I'll make a decision sometime this winter.

One of the guys I have ridden with when I visit in Texas was diagnosed with prostate cancer 15 years ago.  He is 92 and still riding.   :BEER:
Matt

I am no fan of surgery but your numbers are do not rule out surgery; even though I would not have surgery you should learn more about it and make the choice yourself. What is the docs rationale for no surgery? Is this a primary care MD ruling out surgery? That is highly unusual as they are not specialists.  My prostate was 112 ccs and it shrunk to 75 ccs after one year of hormone therapy. Gleason scores represent how well or how poorly differentiated the cells are. So each core is studied and there is a score given to the cells in the core.
There is also a percentage of how much of the core has cancer. So the core could have 10% or 40% or 90% cancer. Obviously the more the worse it is.
The Gleason score represent how normal the cells look. The more normal the better differentiated they are. So a well differentiated cancer cell will be given a score of 3 and as the cell starts to look worse and less like a normal cell then the number goes up from 3 to 4, and then 5. In each core the cells are added up. If all the cancer cells are well differentiated and of the same structure then they would say that is a Gleason 3+3=6 in that core. So the next core could be 3+4=7. That means the most of the cancer cells were a 3 and lesser amount of worse cells are a 4. But you add them up and get a G-7. You can also get a G-7 with a different scenario. More cells are poorly differentiated and they are given a number of 4 and then the less amount of cells are a 3. So you have a Gleason 4+3=7. A Gleason 4+3 is worse than a Gleason 3+4 even though they both add up to 7. Then you have the total volume of cancer cells present in the core sample tube.
Learn Learn learn and take your this on as it is your life and your treatment. 
You are not generating a lot of PSA given the size of your gland.  That is generally a good thing. This is not applicable to you but very very aggressive cancer ( some variations of G 5+5= 10) cells do not produce much PSA.

[dilligaf]

This discussion has been very informative. Thank you.

My primary care guy is the one pushing for a second opinion. So far three doctors have given me the "finger wave" exam and found nothing wrong. However lab results don't lie.

Son in law called and is going to meet me at TWO for the GA Rally and then it's off to Canada. Then it's time for Barbers Vintage Meet. After that we will be doing Swamp Scooters in November-and then- I hope I have all the information I will need to make a decision-or-be totally confused.  :BEER:
Matt

[redrider90]

This discussion has been very informative. Thank you.

My primary care guy is the one pushing for a second opinion. So far three doctors have given me the "finger wave" exam and found nothing wrong. However lab results don't lie.

Son in law called and is going to meet me at TWO for the GA Rally and then it's off to Canada. Then it's time for Barbers Vintage Meet. After that we will be doing Swamp Scooters in November-and then- I hope I have all the information I will need to make a decision-or-be totally confused.  :BEER:
Matt

Wow have a great time. I failed to mention (again I have a personal bias against surgery for myself) that 75 is generally considered the cut off for surgery. But many men > 75 have opted for surgery.

[krglorioso]

I shake my head in wonderment...

The other forum I'm involved in is the "Suzuki SV-1000 Portal".  The SV-1000 is a very quick, aluminum-framed 1000cc V-twin sport bike and most are quite modified for speed and handling, as is mine.  At almost 78, I am far and away the dinosaur of that worldwide group.  In maybe 8-10 years on that forum, I don't recall much about medical health problems.  Maybe which brand of acne treatment is most effective...  Totally different perspective on life and health.  They all are immortal.

Ralph

[Archangel]

Might be worth your time to go to this site and review some of the dozens of medical journals on the causes of prostate issues, and the alternatives to radiation, chemicals, and cutting.  Information is a powerful weapon, and there is more than you would think outside the typical range of therapies offered. You can do many things to help yourself the doctor will not share with you. Good luck.


http://nutritionfacts.org/topics/prostate-cancer/

[wildebube]

Might be worth your time to go to this site and review some of the dozens of medical journals on the causes of prostate issues, and the alternatives to radiation, chemicals, and cutting.  Information is a powerful weapon, and there is more than you would think outside the typical range of therapies offered. You can do many things to help yourself the doctor will not share with you. Good luck.


http://nutritionfacts.org/topics/prostate-cancer/

I, for one, will definitely be taking a look at that.  I don't have cancer, but I'm concerned.  My prostate is roughly twice the normal size and in three consecutive tests, my PSA went from 3.5 to 6 to 10.  I've had two of the 12-core biopsies, one when it was 6 and another when it was 10, and they didn't find cancer in any of them, but obviously I find all of this pretty troubling.  The doctor started me on Avodart about six months ago and my prostate has shrunk some and my PSA was down to 4.5 at the last test.  If there are things I can do to help, I'm all over them.

[Rough Edge racing]

 I eat like what's on the link above for about the last 4 years. We do cheat on one meal a week sometimes. I don't know if it'll prevent cancer but we feel full of life and energetic.And blood work has good numbers...My PSA is very low and has dropped a slight bit since the diet...But it's no guarantee due to hereditary, environmental and  lifestyle factors...

 I know six brothers from age 63 to about 50. Five of them have gotten prostate cancer in the last 5 years..Three had radial surgery,I don't know about the other two....I do know the three used to eat a lot of eggs....Supposed connection between egg consumption and prostate cancer.... Ya just never know I guess....

[redrider90]

I, for one, will definitely be taking a look at that.  I don't have cancer, but I'm concerned.  My prostate is roughly twice the normal size and in three consecutive tests, my PSA went from 3.5 to 6 to 10.  I've had two of the 12-core biopsies, one when it was 6 and another when it was 10, and they didn't find cancer in any of them, but obviously I find all of this pretty troubling.  The doctor started me on Avodart about six months ago and my prostate has shrunk some and my PSA was down to 4.5 at the last test.  If there are things I can do to help, I'm all over them.

What are you concerned about? You do not have cancer. Like a lot of men you have a large prostate and large prostates generate lots of PSA. So with 2.... 12 core biopsies you have covered/tested well over 90% of the gland. I had a gland 4 X normal but I drew the short straw and also had cancer. My brother has had 3.... 12 core biopsies and no cancer. Since Avodart his gland has slowly shrunk and is now stable for 5t years. Remember to double your PSA when you get the results because you are on Avodart. As long as you are stable or trending downward do not worry. You can even get some inflammation and PSA can increase during the time. There is no scientific proof yet suggesting that having a large gland leads to cancer.

[Rough Edge racing]

I had a very low PSA score but the Dr. found a problem with digital exam.  That always seems to work.  Had prostate remove 12 years ago, still showing zero on PSA test last year.  Not going to have another PSA test done ever.

.          I have read that in Europe PSA  scores don't carry the weight they do in this country. The finger of a skilled doctor is very valuable

[Sasquatch Jim]

  Eat lots of high octane chili.  Then you can just blow it out your ---

  

[amamet]

A little off topic but same subject, check out  the http://www.gentlemansride.com/about/riding-for-prostate-cancer. It's a fund raiser for prostate cancer research. A little bit on the hipster side but a good cause

[redrider90]

.          I have read that in Europe PSA  scores don't carry the weight they do in this country. The finger of a skilled doctor is very valuable

A lot of men including myself have a negative digital exam.

[Sasquatch Jim]

  I think prostate cancer is genetic.  Some are more predisposed to get it than others.
 Other than taking precautions to not expose yourself to harmful radiation, which can effect genetics, there isn't much
 you can do to avoid it if you are born with those genes.
  Testicular cancer is definitely brought on by electromagnetic radiation.  It is a traffic officers occupational hazard.
  After an over representation of cops in the testicular cancer numbers, it was found that they would sit in their vehicles with the radar gun
 resting between their legs until a car appeared. then they would aim it and get a reading and if no violation, return it to its' resting place between their legs.
  If your job requires you to sit on a radio transmitter you might be affecting your prostate too.