Hi, I am 59 years old, married 40 years, two children and three grands. I was diagnosed two days ago with localized Prostate Cancer. My Gleason Score is 6, Prognostic Grade Group 1 on the right side of the prostate. I am trying to educate myself on treatment options. My number one personal value is not to have to live with incontinence (quality of life would be zero for me if I had to wear a diaper the rest of my life). Second value is to avoid ED and loss of sexuality. Some of these symptoms may be unavoidable at least temporarily. Some of you have been through this process and have recommendations. I would appreciate any advice based on your experiences. I live in Central Florida.
59 Yrs Old just diagnosed with Prosta... - Advanced Prostate...
59 Yrs Old just diagnosed with Prostate Cancer seeking recommendations
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jazz2cool
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DarrylPartner
If your second opinion on your biopsy confirms the first, then consider active surveillance
Good news is that you now have 5,000 new brothers here
Here's a really good patient resource:
nccn.org/patients/guideline...
The first thing to consider is Active Surveillance. You may have the kind of prostate cancer that never needs treatment. You have to find a good AS program, possibly at Moffett to learn more
If you want to investigate treatments, I'd recommend in Central Florida...
• Vipul Patel for surgery - he's done more than anyone.
• Debra Freeman for SBRT
• John Sylvester for seeds
• Matthew Biagioli for high dose rate brachytherapy
• Gary Onik for focal ablation
(I do not recommend protons or IMRT, and mention focal ablation only with certain misgivings).
What about Dr. Dattoli in Sarasota?
I’ve used him since 2015. He radiated all my pelvic lymph nodes. He treats only PCa and is extremely vigilant and precise. Wonderful doctor and very experienced staff. Does brachytherapy and IMRT . Treats guys from all over. But has not adopted SBRT . He believes in low dose to eliminate collateral damage. Maybe too careful?
He does IMRT - which I do not recommend because there is no reason to go through 40-44 expensive treatments when you can do it in just 5. He also does brachy, but Sylvester is world renowned for that.
Thanks
Do you know of a good MO who specializes in PC in the Orlando, FL or central FL area?
No one comes to mind- I would expect Moffitt to attract some good ones.
What are your misgivings about focal ablation either FLA or HIFU? Reoccurrence?
I think that dr. Onik's cryo which utilizes the dead cancer cells as an immunotherapy or vaccine type of treatment to be an advance over focal treatments that completely destroy the cancer cells. A very high rate of success even for the Gleason 10's. I would be concerned about impotence as that was understood to be a consequence of cryo in the past. It seems he has found a way to prevent impotence as a side effect of his treatment.
I had a focal Chris procedure in Ventura California with a dr Bahn for my Gleason 8 that obliterated about 40% of my prostate. No real side affects at all although 7 years later my cancer has come back but interestingly no sign of it in my prostate indicating to me that it had escaped before the treatment and even complete removal of my prostate would not have helped. Often Gleason 6 is a watch a wait scenario. However, I recommend an mri and an mri guided biopsy to be sure there is nothing else there. My first random 14 needle biopsy found nothing and my mri guided biopsy found three positive Gleason 8s all right where it showed up in the mri. 0-14 vs 3-3. What’s your PSA been doing the last few years. A fast doubling time could indicate a more aggressive PC
Schwah
I was given a 20 core, Artemis biopsy in January of 2017. A free and total PSA a week prior to the biopsy was 9.33 with a 12% chance of prostate cancer. Three months later my PSA was 14.28. A year after the biopsy my PSA was 24. I became vegan this year. My PSA is declining with every test since the first of the year. It was 17.2 in July.
My misgivings are spelled out here:
pcnrv.blogspot.com/2016/12/...
I didn't say I'm against it. We just need a LOT more data, especially long-term metastasis-free survival (which might take 15-20 years). It is experimental and should only be done in the context of a clinical trial. Here's what the AUA says about it in their current guidelines (#50-60):
"A very high rate of success even for the Gleason 10's." How do you know that?
I referred to the article in lifeExtension about Dr. Gary Onik and his cryo. June 2016 I believe. I believe that I also noted that he hasn't done that many. That talking to some of his long term successes would be reassuring. Supposedly by leaving the cancer cells intact but dead, an immunotherapy or vaccine type of effect occurs killing cancer throughout the body. Cryo in the past has left men impotent. That would be a reason to talk with former patients. His official site has few testimonials. The patients are identified by initials and the year they were treated. Not enough for me.
At this point I like to be reassured by numbers and facts.
Thanks for the links. Here is one for you. Copy both lines. Schilling writes on Quora occasionally.
___________________________________________________________________
New Prostate Cancer Treatment - Medical Articles by Dr. Ray
askdrray.com/new-prostate-c...
____________________________________________________________________
Currumpaw
The original article from LifeExtension:
_____________________________________________________________________________
Screening and Treating Prostate Cancer | Life Extension
lifeextension.com/Magazine/......
_____________________________________________________________________________
There are studies cited at the end of the article. I know that you like to reference the sources which always makes what you post more credible in my opinion.
What is your opinion of Dr. Onik's cryotherapy? If I had it to do over again I would find out as much as I could about Dr. Onik and maybe try it.
Currumpaw
I think that you have to take EVERYTHING you read in a commercial site like life extension with a big grain of salt. If he had anything useful to add to the conversation, he would publish in a peer-reviewed journal. I don't look at articles not subjected to peer review (even then, there may be issues), and I don't believe that any patient should.
I agree about the salt shaker. Who would be his peers though? His peers in the ablation arenas would be the FLA and HIFU docs. I doubt that he will get glowing recommendations from them. At this time they are all trying to establish their practices.
In my opinion, with any focal ablation the patient must also make lifestyle changes. If they don't the remaining prostate is subject to the same conditions or exposures that may have been the cause of or contributing factors to their cancer.
Currumpaw
The Ahmed/Emberton group in the UK, who do many clinical trials of focal ablation in the UK regularly publish in European Uurology, The Lancet, J of Urology, Cancer, New England J. Of Medicine, etc. All of those top publications ask top names in the field of urology and research to review the data, the statistics and the write-up. The authors must respond to all questions and challenges before their article gets published. Reviewers are mostly academicians at teaching hospitals who are seriously trying to get to the truth of the matter.
Hmmm--speaking of our friends across the pond, have you ever seen this study?
medicalxpress.com/news/2008...
To my knowledge there hasn't been another similar study done to verify or disprove this study. Were the findings in another study to reinforce this study it would be inconvenient I imagine.
Currumpaw
As I just replied that I think that unless it is peer-reviewed journal article, it is not worth my or your attention. Why did you link to yet another one?
I had a PSA of 1.4 to 1.7 for 14 years. Within 20 months after the last of 23 ex-rays using the old, higher level radiation ex-ray equipment to monitor a back injury my PSA was 7.6. I was diagnosed with a Gleason grade 8, T1c tumor. 19 of the ex-rays were in the first 3 1/2 months, the last four over another 3 1/2 months. One ex-ray in the left, lateral, lumbar position in the initial ex-rays, 11 in the anterior position, 11 in the right lateral position. My MRIs showed a darkening of my prostate on one side noted by both urologists. One young and talented, the other a master who teaches other urologists. I noted during the time I was being ex-rayed that my libido dropped off. It would seem that my prostate doesn't heal normally after biopsy procedures of which I have had my share. I got in touch with University Urology when my PSA went up on the advice of my urologist. He suggested testing. I had a bone scan the results of which were clear. University Urology is associated with Brown University in RI. They aren't slouches.
But as for ex-rays, it is becoming apparent that they are indeed dangerous. Taking that tool, the ex-ray, away from doctors not only makes them work harder but in the case of dentists don't you think that their malpractice insurers feel warm and fuzzy when they have an ex-ray to prove it wasn't the dentist's error?
A link below:
Dental X-rays Linked to Brain Tumors - WebMD
webmd.com/cancer/brain-canc......
I have noticed an incidence of thyroid cancer that I never heard of when I was young. I would think that there could be a link to the dental ex-rays. In a company I worked with employing about 125 people, amazingly, two of the younger employees aged mid 30's and early 40's developed thyroid cancer. They have very nice teeth!
The thyroid is a gland as is the prostate.Glands are sensitive. DNA damage would be easier for a gland to sustain from an ex-ray than muscle tissue.
I think you misunderstood. They use ultrasound for most biopsies. MRIs for some - never X rays.
I am well aware that a MRI image is superimposed on an ultrasound screen for an Artemis biopsy. I have had 3 Artemis biopsies, a 27 core, September 2013, a 32 core, December 2014, and a 20 core, January 2017. I have also had one TRUS, 12 core biopsy, using ultrasound only in July of 2013. The drawback to the Artemis is that the 1.5 MRI is used. That urologist told me while my MRI was on the computer screen that he couldn't distinguish between a scar and a lesion. He then superimposed it on the ultrasound screen for an Artemis biopsy, 32 cores. I had previously been biopsied 39X. Perhaps 39 sites where there would be scar tissue? In December 2015 a 3.0 MRI showed that I was free of cancer, no biopsy. The 3.0 has enough definition that the doctor who read it could distinguish between a scar or lesion. He saw nothing suspicious. In January of 2017 I am given a 1.5T MRI in preparation for another Artemis biopsy. It was a 20 core biopsy.
I understand that the FLA docs and Dr. Onik do biopsies and their treatments in bore, while the patient is in the MRI. The ex-rays I had were to "monitor" the progress of a lower back injury. The lumbar ex-ray is the ex-ray using the greatest amount of radiation.
The ex-rays I had were because I had a lower back injury in late October of 2010. Between then and the middle of February of 2011 I was ex-rayed 19X to monitor the progress of my recovery. I was ex-rayed again in March 2X and May 2X for a total of 23 lumbar ex-rays using the old high level radiation equipment by an elderly orthopedic surgeon who had hung up his scalpel. He kept his office open with the ex-ray machine. I felt a loss of libido during the time I was being ex-rayed. 22 months after the last ex-ray my stable PSA of 14 years, 1.4 to 1.7, increased to 7.6 and I was diagnosed with a Gleason grade 8, T1c tumor. Both urologists when reviewing different MRIs noted a darkening on the side of my prostate where I had been repeatedly ex-rayed laterally. At the initial appointment I was given 1 ex-ray left lateral lumbar ex-ray as well as 1 anterior and 1 right lateral ex-rays. I had a total of 11 in the anterior position and 11 right lateral lumbar position as well the 1, left lateral lumbar totaling 23. One of the urologists looking at an MRI was the head of one of a Boston hospital's urology department at that time. Again note, the MRIs were taken at two different imaging facilities and read by two different urologists who both saw an unusual darkening on one side of my prostate. By the way, the 1.4 to 1.7 PSA? My prostate size was measured to be in the 70's. In 1991 after a DRE I was told I had an enlarged prostate. It really didn't bother me much. I could go 5 hours in PPE with a full face respirator working with a drug that if one ingested 80 mg it could cause a fatality.
To my understanding, the FDA doesn't regulate imaging techniques. They have allowed The American College of Radiology and a couple other colleges to establish "guidelines". Do "guidelines" have any teeth? "Guidelines" can more or less be interpreted with impunity by a physician. From 2008 the "guidelines" state that when a patient presents with a lumbar injury the first "guideline" is to wait for six weeks to see if the injury resolves itself. The next step is a MRI without contrast if possible--hmmm--they must have had an idea about gadolinium deposits back then!--Near the bottom of the list of "guidelines" are lumbar ex-rays.
I was the chief of an emergency response team for 4 years, an elected position. I had the confidence of the roughly 80 members. Hazmat response and confined space rescue were our specialties. During a physical after I had cancer with the doctor who gave the ERT members physicals, I told him about the prostate cancer. He was shocked that the elderly doctor had ex-rayed me that many times exclaiming, "I can't believe he did that to you! It isn't as if he could treat your back injury with the radiation! Who did it? The father or the son?" The son, following in his father's footsteps, had become a part of the business. I replied that it was the father. My doctor friend shook his head and said, "That is old school". This doctor once taught at Brown University. He and partners are the owners of a large urgent care clinic that also has a large business doing company physicals as well as general physicals for the public.
Next a radiologist at one of the noted Boston hospitals when I told them of the frequency and number of ex-rays I had been given blurted out, "That's malpractice! You should sue!". I told the radiologist that no law firm would take the case. Successful law firms haven't filled their coffers by using "guidelines" as a basis for a law suit. There is too much room for interpretation. If there were regulations--YES!
Interestingly my veterinarian at the time, an experienced surgeon who is sometimes called upon to do surgery on the zoo animals told me that radiation is cumulative. That I have concerns about DNA damage.
That is part of my tale of woe! The damage done to me by fluoroquinolones is another. Cefdinir should have been used after I reported severe adverse reactions to the fluoroquinolones. It is interesting what bone scans show before fluoroquinolones damage joints and after!
TA
What’s your opinion about Dr Friedman’s book on new PCa treatment method using trt with AI? It sounds very convincing yet apparently has not taken root due to continued fear of testosterone impact on PCa by the urology community.
There are lots of theories. It's clinical evidence that counts.
I think active watchful waiting is a good plan. That is what I am doing and by “active” watchful waiting, I mean that I am following a number of protocals from the alternate medicine universe. Otto Warburg won the Nobel prize for showing that cancer loves glucose, so I have eliminated sugar completely and only eat 15grams of net carbs and less than 30grams of protein per day. It also seems that cancer does not like oxygen, so I am spending a lot of time trying to increase tissue oxygenation by doing breathing exercises. Many of the alternate folk state that it is essential that cancer patients come to grips with their psychological baggage. At first, I poopooed this idea but as I spend time on breathing exercises and enter meditative states, I realize that releasing anger is super important. The beauty of doing these “activities” is that they are all good for you and I believe that the LowCarbLowProtein diet improves surgical outcomes if it comes down to that. Best of luck, if You want more info, let me know.
David
I am very interested to learn more about breathing exercises. Do you per chance have a web link to the regimen that you follow? Any further information much appreciated.
Here is a good link which provides a good theoretical background. normalbreathing.com/downloa...
You can buy a Frolov Breathing device on Amazon. Or you can build your own for a few pennies. Google “frolov” or “butyeko”. I have only been doing this breathing fir a couple of weeks but I am gradually able to identify the measures he refers to and i find that attending to all of the breathing parameters is a great meditative exercise. Will write more but now have to get moving.
Oxygen? I have done many LIVE O2 sessions. Partly for the same reason but also as LIVE O2 has been shown to be beneficial in healing soft tissue damage. All the old athletic injuries I had, tendon and ligament, that were nicely healed years before came back with a vengeance after repeated exposure to fluoroquinolones for biopsy procedures. It started in August 2014. I was biopsied twice more, December 2014 before I had healed and was still doing therapy exercises and supplements to try to rebuild a shoulder, then again in January 2017. More damage, the final old injury returned after the 2017 biopsy. I am still trying to rebuild. I have found the LIVE O2 sessions to be helpful. My flesh has a rosy tint for hours after I finish a session. My tissue gets flooded with oxygen.
Vibration plates also help heal soft tissue damage. I first saw vibration plates in a YouTube video. They were being demonstrated in Sarasota. It was found that elderly folks that were unable to exercise to maintain bone density could get much the same effect by standing on the plates. It was also found that those that had surgery were healing much more quickly than expected. Funny how within a year or so after I saw that video that the major sports teams use vibration plates to heal and help their players recover from workouts isn't it! Also when I visited Gym Source they were selling the vibration plates.
You are starving the cancer with your diet. Have you heard that Metformin has been found to be an excellent drug to inhibit cancer? Especially prostate cancer. LifeExtension makes a supplement, AMPK, that mimics Metformin. Berberine, a natural supplement also acts in the same way.
Have you looked at Dr. Greger's YouTube videos about diet and which foods aggressively kill prostate cancer? He talks about a combination of pomegranate, curcumin, green tea and resveratrol and their effectiveness in killing cancer cells. None of them alone but the combination. Some Kyolic Immune Formula #3 added and black pepper and a bromelain supplement to drive the supplements would also be helpful.
Broccoli sprouts are the #1 prostate cancer killer according to Dr. Greger. I purchase them alive, still growing in a container from Whole Foods. I also read that mustard increases their effectiveness. They are an acquired taste!
Very interesting tips, thank you. I saw Dr. Mercola makes a power plate. My son introduced me to the “poor man’s power plate” which is to stand on one foot only whenever possible. Will check out references you mention.
Standing on one foot will not provide the benefit that a plate does. A plate sends vibrations through the skeletal system. Bone density isn't all that happens in our bones. Our red blood cells and immune cells start in the bone marrow. The plate or running by the impact of your feet on the ground stimulates both bone density and the immune system. Riding a bike, using an elliptical or a treadmill eliminates what personal trainers term, "form follows function". Your body's response to the impact of your feet on the ground while running causes your body to deposit minerals in your bones to strengthen them.
Hi jazz2cool,
I was 54 when diagnosed. Had PSA. 6.9 also low grade, Gleason 6. It took me 3 months before deciding to go with radiation (back in 2004).,.had little side effects (fatigue in about 5 week mark). Had 8 weeks of it and no seeds! Now 68 y.o.
Anyway, no one can absolutely tell you your best option unless I suppose you get some tests, MRI, etc.
"AS" may be the best for now as others have suggested. I like your thinking about diet and meditation, etc. I am trying to eat more veg. and fruits as well as organic...
I took my time to decide before going with radiation. I took that course because I was very impressed by the radiologist oncologist at my local hospital in Upstate (Small town) in New York. He spent an hour with me and my brother to explain everything...he probably repeated things a lot since I was probably not always listening...a lot of info that was medical, etc.
I also talked to some other guys to hear the results of their treatment choices and subsequent stories after the fact, etc....it was good to do this!!!
Bill
If you would like to read a really good book about dealing with psychological issues, get the book by Dr Andrew Roth titled "Managing Prostate Cancer-A Guide for Living Better". He is a psychiatrist, and the book was written recently in 2016. I found it at my local library.
Welcome jazz2cool.
I was diagnosed with PC in 2013 (Gleason 9). I have been dealing with incontinence ever since. I was embarrassed at first but now I am pretty content. I wear a diaper every day and I am extremely active here in California. We support 100%. I hope you will not wait too long in making a decision on your PC.
Talk to your wife. She might understand more than you think, Stage 4 here. Won’t remove the prostate as the cancer is already in my bones and lymph nodes. Ed is going to happen no matter what treatment you choose, the incontenace will only happen if the remove the prostate. The guys here are a lot better at giving you options. Fight the good Fight
I was diagnosed in 2016 with a PSA of 69 then 6 out of 6 positive cores. My Gleason was 7 but the PC was in seminal vesicles but not lymph nodes...i had it removed. I am not incontinent but do have severe ED. 37 beams of radiation only caused the runs and light fatigue..PSA started rising again and spot on hip bone was deemed bone mets...started Lupron at every 3 months and now PSA is udetectable...i am 56 next month a d planning on fighting the best fight..this info I give you so you can have as much info as possible for you to decide on a plan! Good luck!
Good Sunday Morning jazz2cool,
As part of your research, consider the book, Prostate Cancer for Dummies. Sounds silly, but it is constantly updated and provides a wealth of information.
I have been in this battle for six years (please see bio for complete treatment history). You have many options, but most important is to locate a Medical Oncologist who specializes in prostate cancer. A Urologist will recommend surgery and a Radiation Oncologist will recommend radiation, so you need an unbiased "quarterback" to offer various treatment plans.
Best wishes. Never Give In.
Mark, Atlanta
I had it 5 year ago , 59 years old. I was a Gleason 7 (4+3)
Did surgery with a great surgeon but came back 5 years later. Just finish salvage radiation with 6 months Lupron when PSA reach .12
Results up to now looks very good.
My advice to you is why wait for this monster to get more aggressive and loose the opportunity to be cured.
I would find the best Surgeon with a great record and remove that monster as soon as possible. My side effects from surgery were very small. My Dr. was Dr. Samadi in NY. Salvage Radiation was at Sloan Good luck.
I would look into Proton radiation. It has less affect on QoL and should not affect the issues you are concerned with. If you are Gleason 6 and your cancer has not breached the prostate gland this is very viable for you.
I have had PCa for 11 years now, I m 73 years old. My Gleason was also 7=4+3 and my PSA 72. At first I had 42 radiations and for active watching for 4 years until PSA went up and metastases were found. I had 30 more radiations and started Lupron for 6 1/2 years. Now I am off of Lupron with active watching again, my PSA is 0,00 for 6 1/2 years now. Just so you know I have erections again and all is well. Best of Luck!!
Jazz2cool, I too was diagnosed with PC, gleason score 6. I was 72 and was suggested to wait and watch. I couldn't do that so I did some research and found Provision Proton Therapy in Knoxville, TN. Three years out I am cancer free and no side effects. My PSA as of 7/2 was 0.12. I saw one reply where they wouldn't recommend Proton but I highly recommend it over Photon or any other treatment.
I'm a "tad" older at almost 71.. Gleason 3+4=7, 3T MRI showed one tumor area on the left side, right side just BPH. Bone scan negative. Have been sorting out treatment options for two months -- a lot of info comes your way. The complication possibilities of each treatment option weighed heavy with me. I've not firmly decided, but, surgery (at my age) has no appeal. Radiation options seem to have about the same success rate (very high like surgery) but again, complications/retreatment could become necessary. One radiation Doc wanted me on ADT right away -- then I'd never be able to fly -- maybe ever again -- part of my QoL is flying my airplane! The idea of never flying again is a bummer with me. ADT is basically chemo, so if absolutely necessary, I understand, but my Gleason is not too high yet (IMHO.)
The new stuff? FLA and HIFU? Lots of guys say it's not proven yet. If it takes 10-15 years to be "proven" I doubt I'll be here to try those options. The new stuff ... you have to pay for because Medicare only pays for the proven stuff (surgery and radiation ... and not all types of radiation.)
It can be a bit trying, to decide what you want to do. One week it's this, the next week it's that. Some Docs will gently steer you to their speciality (and into more tests.) You'll come to the point, as I have, that it is MY decision (with my wife) and whatever I go with, I'll do so with a positive mind set.
I'm leaning toward FLA even though it's a relatively new procedure. If we all wait for 10-15 years for the results of clinical trials on FLA and HIFU, to consider using it, they might as well ban it. At one time, even surgery and radiation were new. Were they not performed because there were no clinical trials that proved they were dependable? Of course not, they just "did" them. All the fine guys here have an opinion ... when all is said and done (and read, and discussed) ... be at peace with YOUR decision.
You could certainly try active surveillance with a tight anti-cancer diet (and maybe some anti-cancer supplements.) I mean a really tight diet, to not "feed" the cancer.
All the Best to you, jazz2cool.
l really appreciate this forum and thank all the others that contribute.
Iocalized is great! Consider active surveillance under an experienced medical oncologist. I go to a Florida Cancer Institute clinic of which are numerous across Florida. My MC is a young woman called Dr. Luna who practices in Venice Florida. I'm very pleased with her. The Moffett Center in Tampa is an American Cancer Institute site which is also very creditable.
If surgery is needed and you don't want lasting ill effects of radiation go for a prostatectomy. Yours might be small enough to be nerve sparing surgery. There would be some temporary impotence but not forever. It could also be a good age to get an implanted pump and be proud like a teenager. Prostatectomy will result in retrograde ejaculation but orgasm is the same. I learn some things now and then from this forum but please don't avoid a good oncologist and think that supplements, special diets and various snake medicines which have NO proven empirical value can be a substitute. No problem with alternative medicine so long as your primary interventionist is a medical oncologist. Don't freak out, you got it in time
Could not find Dr. Luna who practices in Venice Florida. Found a man but not a woman as you stated in your note.
Sorry, she uses Juna because she is Indian by marriage or first generation. She's Mehnaz Junagadhwalla, MD practice limited to Hematology & Medical Oncology, Florida Cancer Specialists & Research Institute. Office locations are Venice Island, 901 Tamiami Trail at 941-486-1701 or Englewood, Fl at 941-460-1306. Now probably a good time to get an appointment before we are inundated by snowbirds. I believe there is also a man who practices with her. Since Cancer Specialists employ over two hundred oncologists across the state they have access to great resources and there is no reason to drive all the way to Tampa to the Moffett (sp) Center. She is young, smart, accessible. I have been very pleased. I made a mistake in staying with my urologist too long but she has me on Xtandi which is working very, very well.
Sorry you are in this boat, but you are in shallow waters! You have a lot of options, and you do have some time to make some decisions. Take the time. Do your research.
You might try a prostate cancer support group. In our limited experience (only one group by us) - the majority of the men in the support group are or have been in your position, deciding what to do. Watchful waiting/active surveillance is definitely an option for you -- note emphasis on "watchful." And at least it does give you more time to consider everything. At this point, taking a deep breath could be a really good thing for you!
A word of caution -- this online group has a bit of a focus on advanced prostate cancer -- "out of the capsule" and into other annoying places, so realize that you may not be in that particular boat. (Sorry - stuck on the boat metaphor today.)
Talk to your urologist (or oncologist if you are there yet -- you might not be) about your concerns. If he/she is not responsive to your concerns -- consider a new doc. There are a lot of options from where you are. Understand the +/- of all of them.
Getting a second opinion is also a good idea -- right now, or down the road if things change. Any good doctor will welcome a second opinion/consult. You can consider a research-focused urologist/oncologist -- someone who doesn't treat patients as their "job" but works with patients and their doctors and is really in touch with everything going on with just one kind of cancer (this nasty one).
This moment of your life is a tough one. There is so much research and *progress* going on with Prostate Cancer these days, though, there is a lot lot lot of hope out there.
Best wishes.
I had radical prostatectomy done at the end of March. And I’m down to one thin pad a day, only cause a drippel. Like a heroine addict on payday, when I laugh and even now I laugh (A lot) do the kagel work. And let your body and mind heal you can get tru this. “An’t nothing but a thing.”
I want to thank everyone for their posts on this thread. I reviewed all posts and did tons of reading. Due to a high Prolaris score, my decision was for laporascopic robot assisted radical prostatectomy using the latest nerve sparing techniques with Dr. Vipul Patel at what is now Advent Health in Celebration (Kissimmee, Fl). My tumor was not upgraded on pathology (still G6) and was localized to 5% of my prostate. I was lucky. Dr. Patel recently made improvements to his technique (he has done 12,000 of these procedures, more than anyone in the world). My surgery was on Dec 18. I could have used a small pad the day after Cath removal on Dec 26th. I had an erection on New Years Day, and after 4 weeks I stopped wearing pads. I did go to pelvic floor rehab, I take a 3 day a week dose of viagra for a year, and use a vacuum erection device to ensure daily blood flow occurs since spontaneous nighttime erections are still rare to non existent but needed for the health of the tissue. At my 6 week checkup January 30, my PSA was non-detectable.
For those facing advanced disease, I don’t want to flaunt my good fortune. I want to say that this group’s posts frightened me away from trying to manage a chronic disease and chose to try to be cancer free while I was still young, and risk the incontinence and ED, but had to fight my insurance company to pay for it to reduce those risks as much a possible by getting the doctor of my choice, who was local to me.
Thank you for all your responses.
Now I switch over to the Ovacome site to monitor that thread, because 3 days home from surgery, with my catheter still in, my wife was diagnosed with stage 3 Ovarian Cancer. Another fight, and fortunately my wife is a fighter.
Folks, you never know what kind of year you are going to get. But we have to work to stay in the game. We are frightened but taking things a day at a time and staying positive. I think of you and what you are going through and see the posts from concerned spouses and say a little prayer for all of you. You have been helpful to me in ways I know you already understand. When you first get a diagnosis and want to be proactive and don’t know where to turn, the support from those who have been there is incredibly sustaining. I hope my post will give hope to those with early diagnosis and low scores who fear the side effects but are not emotionally suited to watchful waiting, and I highly recommend Dr. Patel.
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