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Just diagnosed 4/29/16

Leghorn95's picture
Leghorn95
Posts: 8
Joined: May 2016

I'm still a bit shocked.I am very spiritual and a Christian.So that helps and comforts beyond words.My numbers psa 6.5 and out of 12 samples in the biopsy 4 had cancer Gleason scores 3+3,3+3,3+4,4+4.So a 6,6,7 and 8.I have no symptoms at all that I'm aware of.My urologist says the oncologist will probably recommend hormone therapy and the radiation pods.He doesn't think it has sprea.Will find out for sure hopefully this week with ct and X-ray.I have a vacation scheduled for this month.He said go ahead don't cancel as it's not critical do do anything immediatel.Any thoughts from any of you with similar diagnosis would be appreciated thanks.....Randy

Will Doran
Posts: 207
Joined: Sep 2015

Leghorn,

Fight Hard. 

I was a PSA of 69, with a Gleason of 7. Stage pT 3b N1. I had DaVinci robotic assisted surgery in Dec 2013, followed by  8 weeks of radiation, & two years of ADT (Lupron).  My PSA is and has been at<0.010 since two months post surgery.  I am going in today to have blood work done to check my Testosterone & PSA plus a bunch of other things my doctors check.  I've been off Lupron for three months.  Hopes are I will still be a big "0" (PSA) with no need for further ADT at this time.

So, there is hope. It's a shock when you hear the words that you have cancer.  But fight like the devil and don't back down.  Best of luck in your Journey.  We will all be praying for you.

Peace and God Bless

Will

Leghorn95's picture
Leghorn95
Posts: 8
Joined: May 2016

thanks will...after I found out about this I'm shocked at the high psa levels....I do feel I have more than just hope...I have faith in God that I will be healed...But not without an inconvenient struggle.At least I'm retired with good insurance.So I'm blessed more than most...One thing that's really frustrating is just over a month ago I got cured of hep c on the new medication Harvoni.Now this.When I found out about the hep c virus it actually scared me much more than this.At the time the treatment was at best 50-50 and I had friends that went through the interferon that were nothing but horror stories.Yes I'm a recovering alcoholic and druggie for now over 20 years.And I lost my fiancée to lung cancer a little over 25 years ago.So I guess I'm prepared better than most for this challenge in my life.

FlyFisher
Posts: 4
Joined: Mar 2016

Leghorn,

Sorry to hear about your diagnosis.  I recently started this fight also.  Your situation is similar to mine, just about same numbers, no symptoms.  Here is what I have done; (1) Start exercising, I walk 2-3 miles a day; maintain a proper diet, (2) Keep your plans for vacation, early in this fight you can schedule things around appointments, later on it will be more difficult.  I made a 4 day fishing trip in April and will make a 10 fishing day trip in May, then things get busy for me; I get first Lupron injection today, 5/2/16, radiation in summer.  This early scheduling is possible because of time delays for taking medicines, healing from biopsy, and your decision making as to treatment.  (3) Keep a log book with your questions for doctors and other facts.  (4) Read the many comments/threads on this CSN website; there is a lot of valuable information; go to your library and get books (I read books written by Johns Hopkins Hospital doctors), (5) Talk with multiple doctors about which of the many treatments is right for you.

Keep up the good fight, keep active, and stay positive.

FF

 

Leghorn95's picture
Leghorn95
Posts: 8
Joined: May 2016

Thanks fly fisherman...I go up to Colorado myself every year for the trout.Conejos River mostly,guess I'll have to put that on hold till next year...Guess I'll be staying closer to home and playing more golf instead this summer and add a lot more miles on my Harley if the doctors allow it as it puts more pressure on the prostate area...

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

Randy,

I am sorry for the diagnosis

generally those of us who are diagnosed go through shock and all those negative feelings for a few months. To cope it is a good idea to associate with positive people so for example at the religious Services you attend, it is best to find an upbeat clergyman.

Please provide more information about your case. Please let us know the percent of cancer in each of the cores that were taken, so for example what was the involvement of cancer in the core that was 4+4.

The American Urological Association recommend a bone scan for men who have a recent 8 and above so it is appropriate as your doctors are doing for you to have this scan. 

 

There is a test call the 3T MRI that can show extracapsular extension. This multiparametric MRI is is the most effective test to diagnose cancer outside the prostate it has very fine definition hand is much better than a CT scan. I strongly recommend that you speak to your medical team about having a 3T MRI.

Determining Gleason scores are subjective there can be Errors By The the pathologist who initially did you pathology so I recommend that you get a second opinion of your pathology by a world-class pathologist. Two such institutions are Johns Hopkins and Bostwick Laboratories you can't simply ask your doctor to send your slides to the to one of these institutions for a second opinion. If you were not covered by Insurance there is about a $250 charge. 

I also wonder that on your pathology report if there was any mention of anything else going on?

 

 

By the way you did not mention your age.

 Each of our cases are different and the treatment as well so for example in your case all of the information is not available now however many times those with a Gleason 8 if it is extensive may receive initial hormone treatment and then some form of radiation

It is important for you to research at this time read books internet research and local support groups there is an organization called us to which you might go to to find a support group in yourarea

Please feel free to discuss questions and concerns that you have at this site we are here for you.   

 

 

Leghorn95's picture
Leghorn95
Posts: 8
Joined: May 2016

I'm 62 years old.......Percentages....0ne of the 6's is 10%-1.0mm,other 6 shows 90%-8.0mm,7 is 65%-7.0mm and the 8 is 95%-11.0mm....I'm planning on going to Baylor Charles A. Sammons Cancer Center – Waxahachie,TX.They have just built a state of the art new hospital with it's seperate cancer center.I am well covered with my insurance through Federal Employess Health Benefits as I'm a retired postal worker.I will for sure ask about the multiparametric MRI technology as I also was referred to a Dr. Matthew Cavey over in Ft. Worth.But it's over an hour away where as Baylor is 20 minutes plus my wife is president of the auxilary there so it would be convenient for her too.She is so supportive......Thanks again for everyones comment.....Randy

Leghorn95's picture
Leghorn95
Posts: 8
Joined: May 2016

I checked Baylor does have 3T mri technology.However I may have to go to big Baylor in Dallas still much closer.In fact the doc in Ft. Worth refers some of his patients to Baylor for the exact thing.Since his office hasn't got it.So obviously it's a no brainer to go with Baylor....thanx again...

Now I just read about a clinical study at UT Southwest and Parkland over in Dallas on direct comparisons between 3t mri and 7t mri this was on brain tumors however...Some of this is getting redundant for people like me...But I will not stop educating myself...I think information for myself is as important as the technology and my faith in the defeat of my disease....

http://www.utsouthwestern.edu/research/fact/detail.html?studyid=STU%20062010-160

 

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

Randy it's great that you are proactive

 At this time I suggest that you do some research to determine a radiation oncologist and a medical oncologist that you might wish tointerview. There are different forms of radiation that you may wish to discuss with a radiation oncologist guest name Ms sbrt AKA CyberKnife novalis this is a relatively new procedure around about 10 years and it takes four or five procedures to administer this it is the most accurate of all the radiation types another radiation type that you may wish to discuss with the doctor is imrt and this has been around a long time and many people use it so you may wish to get his Viewpoint that leads to radiation types at this forum some of us are inclined towards sbrt.

The medical oncologist is the one who administers the hormone treatment if necessary also  the medical oncologist will be less biased than the radiation oncologist or the urologist in determining atreatment type. 

You want a rockstar to manage your case, the very best so if you need to travel, be open to it

find the very best there is a difference between Drs. Success and failure.

success and failure.  you were probably going to a very fine institution , however I suggest that you be open to going to another location if necessary in order to find the very best doctor that will do the job for you you want an artist a rockstar. Not saying that you need to travel but just remember that this is in Your Arsenal.

 

w

 

 

 

 

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

Randy it's great that you are proactive

 At this time I suggest that you do some research to determine a radiation oncologist and a medical oncologist that you might wish tointerview. There are different forms of radiation that you may wish to discuss with a radiation oncologist namely AKA CyberKnife novalis this is a relatively new procedure around about 10 years and it takes four or five procedures to administer this it is the most accurate of all the radiation types another radiation type that you may wish to discuss with the doctor is imrt and this has been around a long time and many people use it so you may wish to get his Viewpoint that leads to radiation types at this forum some of us are inclined towards sbrt.

The medical oncologist is the one who administers the hormone treatment if necessary also  the medical oncologist will be less biased than the radiation oncologist or the urologist in determining atreatment type. 

You want a rockstar to manage your case, the very best so if you need to travel, be open to it

find the very best there is a difference between Drs. Success and failure.

success and failure.  you were probably going to a very fine institution , however I 3 that you be open to going to another location if necessary in order to find the very best doctor that will do the job for you you want an artist a rockstar. Not saying that you need to travel but just remember that this is in Your Arsenal.

 

w

 

 

 

 

 

Leghorn95's picture
Leghorn95
Posts: 8
Joined: May 2016

Ok I'm doing my research.Am I a candidate for proton therapy as they have a fresh facility over in Irving.If I don't feel at ease at Baylor I'm thinking of going to Houston to MD Anderson.We have a 5th wheel so we can stay maybe at a near by lake.Might as well have pleasant surroundings and sure it will give a positive feel for our emotions.Call it a mini vacation.

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

The name of organization that you can reference ID ustoo.com

 They sponsor and list local support groups. 

 

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

Ustoo.com

Sorry my computer is down and I've been using a smart phone which I am having difficulty writing posts.

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

Randy,

There is an organization,  us news and world report that ranks hospitals by specialty. You can look up the various instutions that you are considering. MD Anderson is top notch and I believe that Baylor is also first class.

There have been studies that indicate that Proton Beam is not better than other radiation treatments. There has not been any documentation to indicate that proton is any better than other radiation treatments. Additonally many insurance companies have issues with Proton Beam, since I think that they charge more.

Yes make lemon-aid out of lemons. Enjoy the time in the 5th wheel. In fact enjoy the moments of every day. 

I am now using a regular computer, not the smart phone, which I have a lot of difficulty with. I am sorry for my broken English in the previous posts.

You will be fine; you are doing research and going to great institutions. 

 

Leghorn95's picture
Leghorn95
Posts: 8
Joined: May 2016

Thanks so much I'm already feeling a lot of the weight of this burden has been lifted since starting this thread early this morning while tossing and turning.It has made me reflect on my colorful past for lack of a better description.Some of the things I've done in my previous lifestyle maybe I'm living on borrowed time or playing with house money.As my sister says I don't deserve the wife I have and the life I have.She is right.

Leghorn95's picture
Leghorn95
Posts: 8
Joined: May 2016

Well I go tomorrow for consultation at Baylor with Dr. Rufus Mark.He just joined them in March.From my research maybe he is as good as they get.....Any opinions would be appreciated or has anyone heard of him,he has been around.....thanks.....Randy

http://www.zoominfo.com/p/Rufus-Mark/80415076

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