Recently diagnosed - questions about treatment

LannyP

Getting a second pathology decision

Hi greenteaguy, I certainly agree with you about more information being better. I've decided to have my biopsy samples examined by the pathologists at Johns Hopkins. Gotta thank VascodaGama for the link.  I'll be scheduling a multiparametric 3T MRI soon also.

I feel like I can trust my urologist. Researched carefully before choosing one a few years ago. He's with the urology group at a large, well-respected university teaching hospital and has been in practice more than 25 years.

Also couldn't agree more about lifestyle choices having a strong bearing on health. Seems to be a lot of evidence piling up that the typical Western diet is a strong contributing factor to the prevalence of prostate cancer in American men.

Hard for me to believe 25 years ago I weighed more than 300 pounds. I topped out at 306. In addition to being morbidly obese, I had high blood pressure, severe acid reflux and the onset of type 2 diabetes. I was eating lots of junk food, sugary snacks and drinking 12 cans of Coke a day.

Finally got sick of feeling sick all the time and decided to lose weight. Over the course of 8 or 9 years lost 126 pounds down to 180 by simply giving up junk food and stopping drinking Coke. One thing all morbidly obese people seem to have in common is drinking an overabundance of sugary soda water. The stuff will kill ya.

My wife start buying and cooking only the healthy foods we love. Tomatoes, green beans, corn on the cob, avocados, turkey, salmon, etc.  We also started drinking spinach, kale or collard green smoothies several times a week. We'll put collards and broccoli in the blender with oranges, blueberries, pineapple, etc. and it makes 'em taste good.

When the pounds began falling off all my other medical maladies began to disappear.  The high blood pressure, acid reflux and diabetes magically cured themselves. Amazing what a person's body can do if given the chance.

Been keeping up the same healthy diet for a long time now and haven't eaten at McDonald's, Burger King, Taco Bell or any other junk food restaurant in more than 20 years. No steak, roast or any red meat in 20 years either.

This may sound tough for some folks but junk food, red meat and refined sugar are simply addictions. Like smoking and alcohol.

Can't help but think eating healthy and living healthy has helped keep my prostate cancer from being worse than it is. My dad died of colon cancer in 1990 and my mom and sis are both breast cancer survivors so I think cancer was in the cards for me anyway.

Don't mean to preach. Everybody's going to do what they want to do and that's fine. But living healthy is really not depriving a person of anything. Quite the opposite.

 

Hi Georges, yes sir, I count myself as lucky for being able to pretty much breeze through my gallbladder surgery. Of course gallbladder surgery has no where near the complexity and difficulty of radical prostatectomy.  Hope you're doing well.

Lanny

 

Georges Calvez

Carbon dioxide

Hi Lanny,

Yes, they pumped a lot into me for the prostatectomy.
The day after the operation I was supposed to go for a short walk to disperse the gas but went further than I should have.
The gas bubbled up and I fell down with the pain just as I was about to get back into bed.
There were about four nurses looking at me as I picked myself up and got back into bed.
After that I was more cautious, it was gone in a few days with some epic burping and farting.
They gave me ketamine as well that resulted in horrible post op constipation.
Doctors like to keep these little fun things to themselves!

Best wishes,

Georges

greenteaguy

Right Track

You are on the right track Lanny IMHO.  Keep up the good work.

LannyP

PCa update

Hello, I'd like to take a moment to again thank everyone for sharing their experience and knowledge. It means a great deal to so many of us.

I had my biopsy samples sent to the pathologists at Johns Hopkins and was relieved to see their results were very similar to my original pathology report.

1 percent and 3 percent core volumes and all Gleason 6.

I also had a MRI and got the report back Thursday. The MRI examined my prostate, seminal vesicles and bladder. The report said "no lesion detected".  What a relief.

Although relieved, I'm a bit baffled the MRI wasn't able to detect cancer when it's a fact I have cancer.

I'm planning to proceed with Active Surveillance.

Many thanks again to everyone and best of luck to all the survivors out there.

Lanny

 

Sw1218

LannyP said:

PCa update

Hello, I'd like to take a moment to again thank everyone for sharing their experience and knowledge. It means a great deal to so many of us.

I had my biopsy samples sent to the pathologists at Johns Hopkins and was relieved to see their results were very similar to my original pathology report.

1 percent and 3 percent core volumes and all Gleason 6.

I also had a MRI and got the report back Thursday. The MRI examined my prostate, seminal vesicles and bladder. The report said "no lesion detected".  What a relief.

Although relieved, I'm a bit baffled the MRI wasn't able to detect cancer when it's a fact I have cancer.

I'm planning to proceed with Active Surveillance.

Many thanks again to everyone and best of luck to all the survivors out there.

Lanny

 

To Answer Your Question

"I'm a bit baffled the MRI wasn't able to detect cancer when it's a fact I have cancer."

because MRI's aren't perfect. they can sometimes over look lesions that are very small. i 4got the size it will miss. plus, keep in mind, it's not the MRI that's reading the prostate, it only scans. that job is done by a human who can also over look lesions that may be too small for the eye. i had a PI-RADS 4 that turned out to be benign. so, this is why a biopsy is important. it's the only thing that will confirmed cancer and even THAT'S not perfect. GOOD LUCK!!!!

VascodaGama

False negatives

Lanny,

I have a similar situation with a false negative result from a PET scan. The 68Ga-PSMA I suggested you in the previous post, did not detect my cancer/lesions or it did but the reader (a nuclear physician) did not identify it in the image. Your case is more relevant than mine as you got a positive biopsy of tissues lined up in the negative image. In my case I have just an increasing PSA (no gland in place since 2000) telling me about an existing cancer.

MRI images are ruled by the size of tumours. Those smaller than 7 millimeters are hard to be detected by the typical MRI (4 mm in 3T-MRI). PET is better because it is not dependent on the size but on the activity of the cells. These must firstly digest/absorb the contrast for it to be discoverable at the image. The PSMA is the best in prostate cancer and surely it will glow in the picture but the reader must have high experience in distinguishing cancer from normal tissue, in particular at areas where the tracer could accumulate due to both types of cells (malignant or benign).

I think you doing well in choosing AS for the momment. I wonder your family's opinion. You should be attentive to any divergence in terms of the present findings. The PSA may not be enough to judge your status in the future. Can you share here the protocol used by your doctor. What is he recommending?

VG

Max Former Hodgkins Stage 3

LannyP said:

PCa update

Hello, I'd like to take a moment to again thank everyone for sharing their experience and knowledge. It means a great deal to so many of us.

I had my biopsy samples sent to the pathologists at Johns Hopkins and was relieved to see their results were very similar to my original pathology report.

1 percent and 3 percent core volumes and all Gleason 6.

I also had a MRI and got the report back Thursday. The MRI examined my prostate, seminal vesicles and bladder. The report said "no lesion detected".  What a relief.

Although relieved, I'm a bit baffled the MRI wasn't able to detect cancer when it's a fact I have cancer.

I'm planning to proceed with Active Surveillance.

Many thanks again to everyone and best of luck to all the survivors out there.

Lanny

 

Imaging

Lanny,

A PET or CT not finiding PCa is not surprisng, it is the norm.  Any competent urologist should have told you this going in.

LannyP

Thanks to all for their knowlegeable input

Gentlemen - thank you all again and hope you all are well. Been consumed with work projects the past several days thus the delay in posting.

Vasco - just like me, my family is very happy that my cancer was detected at an early stage and appears to be non-aggressive. My wife, mom and sis feel the same way I do about AS. It doesn't bother me to know I have cancer as long as it's not threatening my health and future. I'm prepared to have surgery if and when it ever becomes necessary.

My urologist's AS program calls for PSA blood tests every three months from the date of diagnosis, digital exam every six months and MRI one year from the date of diagnosis. Repeat biopsy (MRI/TRUS fusion) at 1-2 years, determined by MRI results. A rapidly rising PSA, abnormal digital exam or positive MRI changes the whole ball game. I expressed my wish to him to have an MRI performed now and he said sure and gave me a referral.

Every decision he's made so far has been 100% accurate so I'm gaining reassurance in his experience and skill.

My next visit is on April 16 for a PSA test and I'll talk to him about the 68Ga-PSMA PET scan then.

Good luck and wishes of good health to all.

 

t3zureislnz

Father with PSA 477.4 ng/ml and Gleason 3+4=7

Been researching since I saw my father’s dxs couple of days ago. He has nuclear med appt nextweek and CT Scan the week after.

We’re all in shock bec my father is healthy, does not smoke, drink and no other vices. Don’t know where to start ;( 

What treatments, survival rate, cure??? We’re all heart broken esp he just retired from work lastmonth. We threw a surprise party for him, and we’re all excited that he can finally spend more time with is ;(

hewhositsoncushions

t3zureislnz said:

Father with PSA 477.4 ng/ml and Gleason 3+4=7

Been researching since I saw my father’s dxs couple of days ago. He has nuclear med appt nextweek and CT Scan the week after.

We’re all in shock bec my father is healthy, does not smoke, drink and no other vices. Don’t know where to start ;( 

What treatments, survival rate, cure??? We’re all heart broken esp he just retired from work lastmonth. We threw a surprise party for him, and we’re all excited that he can finally spend more time with is ;(

Please create a fresh new

Please create a fresh new thread with all the details in you have to date. Without that it will be hard to go into detail.

Max Former Hodgkins Stage 3

LannyP said:

Thanks to all for their knowlegeable input

Gentlemen - thank you all again and hope you all are well. Been consumed with work projects the past several days thus the delay in posting.

Vasco - just like me, my family is very happy that my cancer was detected at an early stage and appears to be non-aggressive. My wife, mom and sis feel the same way I do about AS. It doesn't bother me to know I have cancer as long as it's not threatening my health and future. I'm prepared to have surgery if and when it ever becomes necessary.

My urologist's AS program calls for PSA blood tests every three months from the date of diagnosis, digital exam every six months and MRI one year from the date of diagnosis. Repeat biopsy (MRI/TRUS fusion) at 1-2 years, determined by MRI results. A rapidly rising PSA, abnormal digital exam or positive MRI changes the whole ball game. I expressed my wish to him to have an MRI performed now and he said sure and gave me a referral.

Every decision he's made so far has been 100% accurate so I'm gaining reassurance in his experience and skill.

My next visit is on April 16 for a PSA test and I'll talk to him about the 68Ga-PSMA PET scan then.

Good luck and wishes of good health to all.

 

Converse

Lanny,

An argument for A/S is that you can delay curative treatments and their side-effects.  The other side of that coin is that the older you get, the less able a patient is to tolerate the curative treatment, and the harder the side-effects will be to recover from.  Also, there is a remote, slight chance that the A/S period will allow the disease to depart from the gland, even with careful routine checks.

You are correct in noting that your doctor is saying and doing all of the "right stuff."  A/S is a common choice today, and the protocols have good rates of success, so bless your choice, whatever it may be,

max

ASAdvocate

LannyP said:

Thanks to all for their knowlegeable input

Gentlemen - thank you all again and hope you all are well. Been consumed with work projects the past several days thus the delay in posting.

Vasco - just like me, my family is very happy that my cancer was detected at an early stage and appears to be non-aggressive. My wife, mom and sis feel the same way I do about AS. It doesn't bother me to know I have cancer as long as it's not threatening my health and future. I'm prepared to have surgery if and when it ever becomes necessary.

My urologist's AS program calls for PSA blood tests every three months from the date of diagnosis, digital exam every six months and MRI one year from the date of diagnosis. Repeat biopsy (MRI/TRUS fusion) at 1-2 years, determined by MRI results. A rapidly rising PSA, abnormal digital exam or positive MRI changes the whole ball game. I expressed my wish to him to have an MRI performed now and he said sure and gave me a referral.

Every decision he's made so far has been 100% accurate so I'm gaining reassurance in his experience and skill.

My next visit is on April 16 for a PSA test and I'll talk to him about the 68Ga-PSMA PET scan then.

Good luck and wishes of good health to all.

 

Lanny, That sounds like a

Lanny, That sounds like a good plan. I have been in Johns Hopkins' AS program for ten years, and your protocol appears similar, except that we use PHI tests every six months. PHI includes PSA and free PSA, and another prostate cancer marker.

Good luck to you, and keep us informed.

Max Former Hodgkins Stage 3

ASAdvocate said:

Lanny, That sounds like a

Lanny, That sounds like a good plan. I have been in Johns Hopkins' AS program for ten years, and your protocol appears similar, except that we use PHI tests every six months. PHI includes PSA and free PSA, and another prostate cancer marker.

Good luck to you, and keep us informed.

A/S Study at M. D. Anderson

Lanny and A/S,

 

I found this pretty recent report informative about much regarding current A/S decision-making.

 

https://www.mdanderson.org/publications/oncolog/active-surveillance-for-prostate-cancer.h16-1591413.html

lighterwood67

Active Surveillance vs Active Termination

Looks like you have done your homework.  In my opinion, it boils down to life expectancy and disease risk. Low disease risk and high life expectancy, in some cases, equals AS.  It is your decison based on the facts presented to you.  Good luck on your journey.

LannyP

Gentlemen, many thanks to all of you for your reassurances. There's not enough good words in the dictionary to describe the service you're all providing to so many out here who are filled with uncertainty.

Forgive me for the long delay in posting back. The past three weeks have been an avalanche of work projects that I'm finally beginning to get a handle on.

Since I first learned of my elevated PSA last December, I've been researching prostate cancer with a passion. Literally hundreds of hours spent studying everything from scholarly medical papers to the simple anecdotes of the average Joe.

From what I've read, there's mounting evidence that diet and exercise play a strong role in the progression or lack of progression of prostate cancer.

During the last week of February I embarked on an almost all plant-based diet and at least an hour of vigorous daily exercise.

For breakfast whole grain cereal with plain soy milk, glass of green tea and a cup of blueberries. For lunch a large serving of cooked tomatoes then vegetable stew with onions, barley, beans, mushrooms, corn, red bell peppers, carrots, etc. Two tangerines and a banana for dessert. More green tea. Broccoli and blueberry smoothie in the afternoon. Large serving of cooked tomatoes with multigrain crackers for dinner. Wild salmon, trout or sardines three times a week. Lots of water. Plus a good hard hour or more on the bicycle every day. Weight is down from 192 to 178.

Last December and January my PSA was steadily climbing and I recently learned it had reached 7.1 on January 11, the day of my biopsy.

Just had my first follow up PSA test on April 16, got the results on April 23 and couldn't believe it had fallen to 5.5!

I know it's possible for PSA results to vary for different reasons but I can't help but think diet and exercise are contributing factors. I sure hope so!

Scheduled to have the next PSA test in July and hoping upon hope to see a continuing downward trend.

Many thanks again to all of you. Hope you're all doing well.

 

Lanny

greenteaguy

Great work

Great work Lanny.  As you know I am on much the same course as you and will post more details later.  My PSA started higher than yours and has ranged from 7.9 to 10 during the last year.  Is at about 9.2 now.  Also this web site has been a gold mine of useful information for me, nutritionfacts.org.