CSN Login
Members Online: 1

You are here

Recently diagnosed - questions about treatment

LannyP's picture
LannyP
Posts: 32
Joined: May 2018

Hello, I'm new to the prostate cancer forum and would like to start out by thanking all the members here for their kindness and generosity in helping out so many in need.

I was recently diagnosed with prostate cancer.  I'm 61, don't smoke, don't drink, eat a healthy diet, get a moderate amount of exercise and maybe about 10 pounds overweight.  No problems with urinary function, feel pretty much the same way I did when I was a young guy.

I've been getting my annual PSA and DRE exam with a urologist for the past 3 years. In December of last year my DRE was still normal but he noticed my PSA had gone from 4 to 6.5 so he ran some more tests and decided to schedule a biopsy for me in January 2019.

He called me a couple of weeks ago and said the pathology had revealed a tiny amount of cancerous cells in 4 of 12 cores and he would discuss all the details with me when I come for my follow up visit. 

He said he wanted to have a genomic test performed before our consultation to get a better idea of the level of aggressiveness of the cancerous tumor in my prostate.

I believe he's ordered the Prolaris genomic test because the other day I noticed an entry from Myriad Genetic Laboratories on my health insurance which I check online.

My follow up consultation is scheduled for next Monday morning February 18th.  I'm hoping for the best but preparing for the worst.

Question - If I have to have immediate treatment, is surgery or radiation better? How does a person decide between the two? I've been trying to educate myself and it seems both surgery and radiation have fairly equal outcomes success-wise but both can also involve some pretty negative side effects.

 Many thanks to all, hope to hear from you soon.

 Lanny

 

cralco
Posts: 7
Joined: Feb 2019

Hi,

I am in the exact same place as you and having a tough time picking between the 2.  The surgeon told me to have surgery (big surprise) as this is the only way to get the cancer out of your body and avoids the chance of secondary cancers (rectal, bladder etc given the intense radiation).   The radiation person told me surgery has big risks, and incontenence and impotence are  likely, and the chance of secondary cancers are minimimal.   So as i investigate, i am finding at the end of the day its just a personal choice.  You will hear a lot about making sure you go to someone who has done this alot but finding hard data on a dr. is hard, its almost all anectdotal.   My concnern is the lack of 15+ year out data on the heavy does radiation.    Please let me know if you hear anything differently, and feel free to email me directly at cralco@aol.com

greenteaguy
Posts: 35
Joined: Feb 2019

We have similar circumstances.  The urologist should explain what "tiny" means on the 18th by way of telling you what  the Gleason score of the four positive cores are.  If they are a 6 then you have options. I think it is odd that he didn't have an MRI performed before the biopsy.  Before you make any decision have the MRI done along with a CT and bone scan.  If by chance he strongly suggests surgery or radiation before doing all those then run out of the office.  After having all that done I chose AS.

Clevelandguy
Posts: 461
Joined: Jun 2015

Hi Lanny,

A couple questions to ask your doctor on your follow up:

What was my Gleason score? The doc should give you a x+y number.  The first number is what the majority of the cells were and the second is the least amount of cells. A 3 number is not as agressive as a 4  or 5 number.  So a 3+3 would be better than a 4+3.

Next ask where the cancer was located, deep inside the Prostate or say right next to the bladder neck, that could tell you how much time before the cancer “breaks through” possibly to other organs or bones.

In my opinion if the cancer is contained and verified through an MRI or other diagnostics tests, surgery is a good option, if it has escaped the Prostate then some form of radiation might be better to stop it’s spread.  Both surgery and radiation have side effects, study them well so you know what your getting yourself into.  Good luck and let us know more info from your follow up visit.

Dave 3+4

VascodaGama's picture
VascodaGama
Posts: 3030
Joined: Nov 2010

Lanny,

Treatments options for prostate cancer (PCa) are many and the choice depends on the location of the cancer and patient health status. Radical treatments (Surgery or Radiotherapy) are the ones that can provide cure. However, cure is better assured if the cancer is whole contained in the prostate gland. The gland becomes the target so that dissecting it or "burning it whole inside us" would eliminate the bandit for good (contained case). When cancer has spread cure is less assured. One needs to think wider as the treatment must include the gland plus those affected spots (localized case or systemic). When the spread is found at far places, doctors typically treat with palliative intent using chemotherapy, hormonal treatment, immune therapy or a combination of those. Other modalities like cryosurgery, Laser, thermal and HIFU exist but have lesser number of cases to assure better results than the traditional radicals. Active Surveillance (AS) is used to postpone an attack on the cancer. It consists in a regimen of periodical tests and vigilant exams, to check for any progress of the disease. In my opinion, this is the best one can choose if the cancer is sort of indolent and the situation permits it. Many guys found with PCa may live with the unwanted guest forever and die from other causes. Prostate cancer is a slow growing bandit when compared to other forms.

Your next step is to identify its aggressivity (Gleason grades), locate the hidden cancer and get a clinical stage. This is attributed to you by your oncologist based on retrieved information. So far you got a PSA value, the location of 4 positive out of 12 needles (in the gland) and a negative DRE. The genomic test will tell if the type of cancerous cells belong to the group of those more prune to spread or lesser hormonal dependent. The genomic test does not quantify its aggressivity. Now you need a series of image studies to check for extraprostatic issues (localized or at far places) and additional health indicators to verify that you have no impeding case that would prohibit one of the options in treatment. Cardiovascular issues may influence surgery and ulcerative colitis may prohibit radiotherapy.
The best in image exams is PET scans (that include bone and soft tissues). CT is the worse because it doesn’t identify small lesions. MRI is also limited but better than a CT in diagnosis of PCa.

I recommend you to read about the risks and side effects of each treatment which will prejudice your quality of living. You are young and there for with a long life expectancy. Treatment may be needed but quality of life is something you want to keep as much as possible. Do your researches, get second opinions and act coordinately and timely. Do not rush to a treatment without knowing the details involved even if your doctor suggest that to you. Surgeons recommend surgery as much radiotherapists recommend radiation.

Here are some links that may help you to prepare a list of questions for your next meeting;

https://www.cancer.org/cancer/prostate-cancer/detection-diagnosis-staging/talking-with-doctor.html

https://www.cancer.net/navigating-cancer-care/diagnosing-cancer/questions-ask-your-health-care-team

A sort of compendium on Prostate Cancer and care;

https://www.lifeextension.com/Protocols/Cancer/Prostate-Cancer-Prevention/Page-01

Best wishes and luck in your journey.

VGama

LannyP's picture
LannyP
Posts: 32
Joined: May 2018

Gentlemen - many thanks for your knowledgeable comments. I'll certainly take them to heart and will ask my doctor the questions you've outlined on Monday's visit.

cralco - I've read your thread with great interest. I appreciate your advice. I'll be researching surgery and radiation and will contact you if I run across information you've expressed interest in.

greenteaguy - I really do want an MRI. I'm very curious about the size and location of the tumor(s).  If I'm lucky enough to have a Gleason 6 and low Prolaris score, should I still insist on a CT and bone scan?  Is it best for any and all men who are diagnosed with PCa to have CT and bone scan performed?

Clevelandguy - thanks for the questions you've outlined. I'm leaning pretty heavily toward surgery (if the cancer is still contained). Although erectile dysfunction is a worry, my primary concern is incontinence that won't improve even after a year or two. From what I can gather, incontinence can be a problem after radiation too.  This makes it tough to choose between the two.  My best hope is that I'll be a candidate for AS but I'm not counting on it.

VascodaGama - many thanks for your comprehensive reply. Your insight and knowledge are greatly appreciated.  I find myself constantly searching for information that can be interpreted as reassuring in my case.  For example, Myriad Laboratories describes Prolaris as a test that can help guide doctor's decisions between treatment and AS for their PCa patients.  This gives me hope that I at least have a chance for the AS option.  Am I on the right track here?

Many thanks also for the links you've provided. I'll be reading them carefully.

Thanks again to everyone. You're making this worrisome problem a lot less bewildering for a lot of people.

Lanny

 

Tech70
Posts: 53
Joined: Nov 2017

Lanny, just be aware that it is possible to have PCa that doesn't show up on an MRI.  My two biopsys showed two cores positive, each less than 10% of the core.  I have a multiparametric 3T MRI with contrast with the results showing "no lesion of concern".  If the Gleason scores of all cores are 3+3 and the genomic testing shows a nonagressive cancer, discuss active surveillance with your urologist.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3308
Joined: May 2012

Welcome to you Lanny, in a land you never wanted to visit.

I agree with every single post above, so will not rehash what you've already read.  I had DaVince R.P. and it went great, but I was luckier than some, I realize.   Be aware that "high intensity" radiation (this is usually a reference to Cyberknife, which is SBRT) is not the only radiation option, and is not even the most common.  The most common is fractionated RT, almost always IMRT/IGRT.  IGRT is totally as effective as SBRT, and more widely available. Delivery is just a little more inconvenient, with about 40 one-hour trips to the radiation facility required, with weekends and holidays off.   I nearly did IGRT myself, and never considered the "convenience" of 5 treatments verses 40 even relevant.

With surgery, you WILL be impotent for a time, in every case.  Resuming sex usually takes a month or more to a year or more, but tends more toward a year than I month.  My sexual recovery was slow, but three years out today, I no longer even need pills for assistance; everythng is spontaneous, like before surgery.  If several months to a year with ED or partial ED is ok, it is another argument for surgery.  I was 58 at the time, and didn't feel like a break from sex was going to be such a radical change anyway !  I marvel when I read guys here in their 70 worring about "reduced performance."  Huh ?

max

greenteaguy
Posts: 35
Joined: Feb 2019

greenteaguy - I really do want an MRI. I'm very curious about the size and location of the tumor(s).  If I'm lucky enough to have a Gleason 6 and low Prolaris score, should I still insist on a CT and bone scan?  Is it best for any and all men who are diagnosed with PCa to have CT and bone scan performed?

Lanny.  I live in Japan where on the national health insurance program testing and screening of this nature is standard and encouraged.  I think that as much information as posible is better in helping me make an informed decisions, which helped my peace of mind a lot.   As a result I will pay out pocket for an Oncotype DX test in the very near future.

VascodaGama's picture
VascodaGama
Posts: 3030
Joined: Nov 2010

Lanny,

The Prolaris test is added information that will help your doctor in formulating a clinical stage but it will not be the reason to look into AS as the best option for your case.

Surely, Myriad Laboratories would like that doctors start using the Prolaris test in their decisions but this is still a preliminary tool in the diagnosis process without certified reliability. The test identifies genes found usually in patients with certain status in cancer progression. It does not certify that the cancerous cells are indolent but just that they are lesser prune to spread. Surely it provides hope for those guys found with Gleason grades lower than 3. In fact I would prefer to know the Gleason grades of the cells analyzed by the pathologist under the microscope to use it as prime information in a decision for AS. The lower G grades of 1 and 2 have been abolished since 2005 so that what is classed as Gleason score 6 today could be a Gleason score 2, 3, 4 or 5. These are in fact the low risk cases. I doubt that a doctor would recommend AS to a guy with a Gleason score of 9 or 10 even if Prolaris would verify that the genes in those cells were not related to cases of progression. On the other end, a doctor may avoid recommending AS to a patinet with a Gleason 6 and positive Prolaris test but it wouldn't do so if in fact the Gleason 6 were classed lower {ex: Gs4 (2+2) or Gs5 (2+3), now considered as almost a benign issue}.

In your shoes I would feel that I was more on the right track in choosing AS if a secondary reliable laboratory/pathologist confirms the results of the biopsy. The same thinking goes with the image studies. I would prefer to receive a clinical stage based on multiparametric information from a 68Ga PSMA PET/CT scan plus others (CT, BS, MRI, CD, etc) than to get a prediction from a genetic test in metastases. I would look into all variables before laying back on the issue and continue life as it was.

Here is a link to JH;

http://pathology.jhu.edu/department/services/secondopinion.cfm

Each case is unique to the holder. We are similar but different and what we decide is for sure the best we could have. Trust yourself. You will find that best too.

Best wishes and luck.

VGama

LannyP's picture
LannyP
Posts: 32
Joined: May 2018

Tech70 - thanks for the information about MRI.  I was completely unaware of that.

 

Max - thanks for the explanation of radiation.  Good information to know.

Got  a couple of questions -

What made you decide on surgery instead of radiation?

What about urinary incontinence?  Were you able to get over that relatively quickly also?

The risk of chronic incontinence is my biggest worry if I go the surgery route.

 

greenteaguy - thanks for the wise words.  You're right. The more information a man has, the better.

 

VascodaGama - many thanks for the strong information. Helps me see things more clearly.  I'll definitely be getting imaging scans before deciding on treatment. I'll know a lot more after my visit with the doctor on Monday.

 

Thanks again to everyone. I'll be posting back soon.

Lanny

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3308
Joined: May 2012

Lanny,

I considered my choice over a period of about a month, reading and seeing doctors.  Every man should at a minimum see both a surgeon and a radiation oncologist to hear their views.  I was very ambivalent and undecided for some time, which is NOT uncommon here.  

I chose surgery because (1) it allows more recourse to secondary treatments than radiation does.  That is, if you have relapse following surgery, you can virtually always then have IMRT, hopefully toward a cure.  At that point, SBRT (Cyberknife) is usually not used, for technical reasons. I have heard that Cyberknife is being tested in some areas to see if it can be FDA certified for salvage therapy, but results from such studies take a long time to process.    Some guys will state that "surgery IS possible following R.T."   True, but with severe liimitations.  MOST surgeons in fact will NOT operate on a radiated gland, and doing so is vastly more difficult than a non-irradiated gland.  So, a few surgeons will do some form or other of surgery, but finding such a surgeon will be difficult, and will occur only with poor prognosis going in.

(2) A second reason for surgery vs. radiation if there is little or no evidence of escape (metastasis) is if you have urinary stricture (something blocking flow).  Radiation will commonly make this worse. Certainly not always, but a real possibility.  Radiation damage to flow after radiation treatment CAN be fixed via minimal surgical techniques in some cases.

(3) A third reason is that scans are of poor value verses PCa, since the tumors are frequently just too small to be seen on a CT, a PET, or an MRI.  Worth doing in many cases, but for a PCa tumor to be large enough to spot on PET or CT, it ordinarily has to be quite significant (large, relatively speaking).  But with surgical removal, the guy knows exactly what he was dealing with.  The gland is completely dissected by the pathologist after he receives it, and he will document precisely where cancer was and was not.   Of course if he determines that there WAS metastasis, IMRT is almost always begun after the incision area heals.  But there is certitude about what was going on "down there."

Men are born with two urinary spincters. R.P. (prostectomy) removes one of these, which is why some incontinence is common after surgery.  There are excercises you can do prior to surgery to minimize this (called kegels).  You will wear a cath for about a week post-op, and when the cath is removed be advised to bring an adult male diaper.  I wore diapers two days, and it was no longer needed.  I did wear a pad for an additional week or two, and then a "liner" for some time beyond that.  But I had pretty good urinary control within a week or two of cath removal.   Urinary control returns sooner than sex for almost all RP men these days.  Diaster cases are much rarer now than they were in decades past. A guy with good urinary control pre-surgery and who does not have complications in surgery (rare) will ordinarily regain continence relatively fast thee days with a good surgeon.

These are all generalities.  Surgery and R.T. both have their perfect outcomes and their diaster stories also, as with any medical proceedure whatsoever.

max

 

.

Josephg
Posts: 165
Joined: Jan 2013

Welcome to the Board, Lanny.  You have received great perspective and initial advice above from some great folks in this forum.  I found this forum and members ESSENTIAL to me in my PCa journey.

Items to note: (1) you have options regarding treatment protocols, (2) all treatment options have their own plusses, but they also all have risks of potential side effects, (3) everybody's case is unique to them, but similatiries in patient experiences exist (folks in this forum), and these experiences can be helpful to you in selecting your own treatment protocol, (4) nothing is guaranteed in any treatment protocol, however doctor experience in executing any treatment protocol is critical to its ultimate success, and (5) at the end of the day, the decision regarding the selected treatment protocol is yours to make, and yours to own.

So, like the other folks above, I recommend that you continue to do your research.  Ask any and all questions that you have right here in this forum, and you will receive honest answers, based upon patient experiences and previously curated research by the folks in this forum.  We are not doctors, but we all have real patient experiences in fighting PCa.  Take advantage of the links to information that folks in this forum provide to you in their responses, as part of your research activities.

I've personally had surgery, radiation, and hormone treatment protocols, as well as surgery to counteract permanent side effects, and I have documented my experiences in this forum.  I have experienced just about all of the potential side effects associated with these treatment protocols, and while some of the side effects were temporary, others are permanent.  Most important, I am still here, still on my PCa journey, living one day at a time, and I still enjoy a high quality of life.  I believe that you can, and will, as well. 

You can find my story and links to my experiences about 7 or so topics down in this first page of topics, titled 'Checkup Status'.  For brevity, you can scroll down in my posts to the post titled '66 Month Checkup', dated 2/11/2019 for the latest information and links.

I wish you the best of outcomes on your PCa journey, and we are here to assist and support you in any way that we can.

LannyP's picture
LannyP
Posts: 32
Joined: May 2018

Max - thank you sir for the clear and concise information. The more I read and learn, the stronger I lean toward surgery as an initial treatment.

Josephg - many thanks to you and all the members for making me feel welcome. I've been reading your posts and can see you've been through a great deal. Your ability to keep a sunny disposition through so much adversity is admirable.  Hope you're doing well.

Lanny

Steve1961
Posts: 249
Joined: Dec 2017

find a surgeon that has done 1 thousand or more .lmake the date .stay off this sight until you are done .then report back if you wish u know everything  u need to know ..good luck u will be great ..I say this because I went tooo far ...DO NOT read any other posts..unfortunately most of them are not pleasant at all ...by the time I made my decision which was the wrong decision I was so freaked out I didn’t know what I was doing ...Oh I also regret telling so many people ...lo should have only told my family and maybe my closest friends ...one perso; told another then another ..then you hear one horror story after another ....it is unreal ....make your decision ..if u are married stick close to your wife and family and not this sight ......peace 

hewhositsoncushions
Posts: 279
Joined: Mar 2017

LannyP

Bear in mind that only a minority have severe side effects and this can often skew how they feel about the overall picture.

H

Georges Calvez
Posts: 295
Joined: Sep 2018

That is definitely the case.
Any medical procedure has risks, you do not know what will happen.
90% of men will recover from the incontinence and 60% will recover some erectile function if the nerves are spared after a prostatectomy
There are bad cases in prostatectomy where the stitches joining the bladder to the urethra rip, just like with radiation where a fistula opens up.
Even serious cases of prostate cancer live for longer than most other cancers.
Don't forget, it is not crucifixion, but for me the gas effects after the prostatectomy were more painful than falling down a small cliff!

Steve1961
Posts: 249
Joined: Dec 2017

Never mind I thought better 

LannyP's picture
LannyP
Posts: 32
Joined: May 2018

Steve - thanks for posting.  Everything's going to be okay.  There are some horror stories but there's also a lot of inspiring stories and good news here.  I'm gathering as much information I possibly can reading everything from scholarly medical papers I can barely understand all the way through the stories of the "man on the street". And everything in between. Hope you're doing okay. Every day above ground is a good day.

hewhositsoncushions - thank you sir, you're right. Positive outcomes are increasing as time goes on and technology gets stronger and doctors gain more and more experience.

George Calvez - thanks for posting the positive statistic on recovery from incontinence. I realize less than positive outcomes from surgery, radiation and related issues are unfortunately part of the imperfect world we live in. It's good to know that even though prostate cancer is common among aging men, only a small fraction actually die from it.

p.s. - when you mention gas, are you talking about the carbon dioxide pumped into your abdomen during laparoscopic surgery so the surgeon can more easily see and work inside you?  I experienced that when I had my gallbladder removed last summer. After surgery when I would stand up I'd have pain in my shoulders from rising gas bubbles.  That was probably the worst part of the entire experience.  It went away in a day or two.  Luckily that's the only time I've had surgery since I had my tonsils out when I was 6.

Lanny

LannyP's picture
LannyP
Posts: 32
Joined: May 2018

I received what I consider to be good news at the consultation I had with my urologist yesterday.

Turns out my four positive cores contained 0.5 percent, 1 percent, 1 percent and 3 percent of adenocarcinoma. All were Gleason 3+3=6.

I guess this is what the urologist meant when he said a "tiny" amount of cancer was detected when he called me a few weeks ago.

The location of the cancer was all on the left side of my prostate in the mid and lower sections.

In addition, the Prolaris genomic test came back as very low risk on the NCCN scale with a 1.2 percent chance of DSM (Disease Specific Mortality) within 10 years with conservative management and a 0.7 percent risk of metastases in 10 years following surgery or radiation.

The Prolaris findings place me in the category as a candidate for Active Surveillance.

I also asked the doctor if the cancer is confined to my prostate and he said there's no indication to think otherwise.

Although I'm a lot less worried now, it still bothers me.

From what I gather, a blind TRUS-guided biopsy will miss other significant cancers 20-30 percent of the time.  Not good.

I'm thinking strongly about getting an MRI even if I have to pay for it out of pocket.

I asked my doctor about it and he said he would have scheduled imaging studies for me if my pathology and Prolaris showed higher risk.

Any thoughts?

 

Edit: 

VascodaGama - I've been re-reading previous posts and realized you addressed my question earlier --

"In your shoes I would feel that I was more on the right track in choosing AS if a secondary reliable laboratory/pathologist confirms the results of the biopsy. The same thinking goes with the image studies. I would prefer to receive a clinical stage based on multiparametric information from a 68Ga PSMA PET/CT scan plus others (CT, BS, MRI, CD, etc) than to get a prediction from a genetic test in metastases. I would look into all variables before laying back on the issue and continue life as it was."

Thank you again sir.

greenteaguy
Posts: 35
Joined: Feb 2019

Lanny

You know I have stated my opinion that more information is better.  Some, perhaps many will disagree with me, including your urologist.  He/she sort of reminds me of my twin brother's gatekeeper GP.  We both have high blood pressure.  In Japan I immediatly went to the cardioligist of my choice who in one year has done two sonograms of my caritoid artery, performed a test that measured my blood flow and arranged for a brain scan.  My brother's GP has done none of this. 

I share your concern about the limitations of a biopsy which is why I will have an Oncotype DX test performed soon.

I had a visit with another cardiologist whose office set up and advice I didn't like before choosing my current one.  I can also easily change my urologist but he is doing a good job for me.  You deserve the best medical care and peace of mind possible.

Since being diagnosed last July I have changed my lifestyle by consuming mainly a plant based diet along with other positive changes.  I think that prostate cancer is a symptom of a weak immune system and sick body.  My previously not so good lifestyle habits caused my condition, which I hope to change.  No surgical procedure or any amount of radiation or chemo can completely cure cancer except in a small amount of cases.  But our immune system can.  Being on AS affords you the opportunity to cure your own cancer.

Georges Calvez
Posts: 295
Joined: Sep 2018

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

LannyP's picture
LannyP
Posts: 32
Joined: May 2018

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

 

greenteaguy
Posts: 35
Joined: Feb 2019

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

LannyP's picture
LannyP
Posts: 32
Joined: May 2018

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's picture
Sw1218
Posts: 55
Joined: Jan 2016

"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!!!!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3308
Joined: May 2012

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.

VascodaGama's picture
VascodaGama
Posts: 3030
Joined: Nov 2010

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

LannyP's picture
LannyP
Posts: 32
Joined: May 2018

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.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3308
Joined: May 2012

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
Posts: 116
Joined: Apr 2017

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's picture
Max Former Hodg...
Posts: 3308
Joined: May 2012

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

t3zureislnz
Posts: 12
Joined: Mar 2019

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
Posts: 279
Joined: Mar 2017

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.

lighterwood67's picture
lighterwood67
Posts: 209
Joined: Feb 2018

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's picture
LannyP
Posts: 32
Joined: May 2018

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
Posts: 35
Joined: Feb 2019

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.

Subscribe to Comments for "Recently diagnosed - questions about treatment"