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Just Diagnosed Gleason 8

Kitafloyd
Posts: 12
Joined: Dec 2019

Hello all,

I'm new to the forum and here looking for anything that's going to help me down the road.

About a month ago I finally went to go see a Primary Physician after feeling only what i can describe as "off".

I'm 48 yo and pretty active and usually felt pretty healthy for the most part.

Aches and pains and a slight discomfort in my lower left abdomen.

Bloodwork came back with a PSA of 39. Ok.

Went to a urologist ASAP and got another blood test.

Comes back with a PSA of 38.

Got the biopsy right after.

Was told the bad news (Gleason 8) on 12/10.

Hoping to get the Bone Scan and CT by the end of week.

Pretty freaked out by all of this, at the same time just trying to maintain a positive attitude.

Is there anything I can do or start ASAP?

I've already started a drastic diet shift. No red meat, no dairy.

Thank you in advance for any and all comments/suggestion/tips.

icemantoo's picture
icemantoo
Posts: 3278
Joined: Jan 2010

Had the Surgery with Dr Patel on September 30 Six week PSA weny from 7,6 to undetsctable. I am 76. Also a 17 year survivor of Kidney Cancer/ Make sure your Urologist us a n experienced Prostate surgeon or can refer you to one. May the force be with you.

 

 

 

 

icemantoo

Kitafloyd
Posts: 12
Joined: Dec 2019

Thank you for your reply iceman.

eonore
Posts: 96
Joined: Jun 2017

Hey,

Sorry to have you join but welcome to the forum.  The first thing you must do is to not freak out at this point.  You are at the beginning of the road, and the immediate future is for gathering information, deciding on treatment and who will provide it.  I don't know where you are located, but I strongly reconmend getting yourself to a cancer center of excellence if you have not already done so.  This type of facility is best equipped to provide the very best in diagnosis and care.

The other best thing you can do at this time, is get into the best shape you can prior to treatment.  Exercise, weight loss if necessary, etc.  Makes it easier to recover from whatever treatment you decide on.

Keep us posted about the results of you scans, etc.  Also, fill us in about Psa history and anything else pertinent.  There are some very knowledgeable members her who can really provide a lot of very useful information.

 

Eric

Kitafloyd
Posts: 12
Joined: Dec 2019

Thanks for your reply Eric. Yeah the news was a bit unsettling. I'm in pretty decent shape but working on a more regimented fitness plan. Doing some pretty instense research in regards to treatment and local specialists. I'll have more info to post after next week hopefully.

VascodaGama's picture
VascodaGama
Posts: 3234
Joined: Nov 2010

 Floyd,

Welcome to the board. Just like you we all in this forum have experienced that sensation of "freaking out" when diagnosed with the cancer. The first thing I recommend you is to calm down and do some researches before taking any decision. You should know what prostate cancer is about, details of the diagnosis process and the pitfalls of treatments. Take your time, prepare a list of questions to your next meeting and get second opinions on the suggestions. Prostate cancer (PCa) does not spread overnight. Changing diets now is great for your health but it will not affect the course of your PCa case. Please understand that you are not at falt for having PCa. Do things coordinately and discuss all maters with your family. You will do fine.

The PSA is high but it could be due to other causes or a mixture of cancer and benign hyperplasia. Gleason 8 cases have attached risks for spread and such requires image exams to guess the cancer location. However, CT is not very reliable in PCa issues (it provides false negatives) so I would suggest you to add an MRI exam. This image study is important in the process of the diagnosis as this is used to attribute a clinical stage, from which the doctor will recommend a treatment.
In any case, Gleason score 8 with ten positive needles out of 12 has high probabilities of being a non contained case. Can you tell the results of the digital rectum examination (DRE)?

Typically surgery is recommended for contained cases and radiotherapy to localized but not contained. Both treatments have side effects that will prejudice your quality of life so that you should get the details and be choosy.

I would recommend you to check on this link for reading materials;

https://csn.cancer.org/node/311252

Here are ideas for your List of Questions;

https://www.mayoclinic.org/diseases-conditions/prostate-cancer/diagnosis-treatment/drc-20353093

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

 

Best wishes and luck in this journey.

VGama

 

Kitafloyd
Posts: 12
Joined: Dec 2019

Hi VG, Thanks for your reply and the reading list.

Meeting with my Primary on Monday and will see about having an MRI done.

More infor as it comes.

Thanks again.

 

Kitafloyd
Posts: 12
Joined: Dec 2019

I wanted to add that my urologist wanted to start me on Lupron ASAP depending on the results of the Bone and CT Scans.

VascodaGama's picture
VascodaGama
Posts: 3234
Joined: Nov 2010

Floyd,

This last comment may have deep meaning. Your doctor may be thinking that you got an advanced prostate cancer which typically is treated with neoadjuvant hormonal therapy (ADT). However, in your shoes I would not get the Lupron shot without the MRI and without pondering and deciding on the type of treatment you like best. Your future quality of life is much dependent in your present decisions. I recommend you to get second opinions on his suggestions. Lupron will affect the results of any image study you plan to do and it wouldn't work lesser if administered later.

VG

Clevelandguy
Posts: 591
Joined: Jun 2015

Hi,

Dido on what Vasco says. It was me before I started any medication I would get the MRI, bone scan and CT. Then I would talk to your Urologist and also a Radiation Oncologist who specialize in Prostate cancer.  On your Gleason score was it a 3+5 or 5+3 or 4+4.  Each combo has a little different meaning.  Also before I did anything I would get a second opinion.  Need to do your homework as it will effect what type of treament you recieve plus your future quality of life down the road.  Great doctors and great facilities = great results in my opinion.

Dave 3+4

lighterwood67's picture
lighterwood67
Posts: 264
Joined: Feb 2018

Well, welcome to our forum.  You will certainly be exposed to more information than you thought you would ever need, but you do need.  Take your time.  Do your research.  There is always that sense of urgency that I have to do something.  You know, oh my Lord I have cancer.  Let me go look in the mirror.  Well, I do not look like I have cancer.  I look just like I did yesterday.  Imagine that.  So, my friend, with a common enemy you have defined your cancer (biopsy);  you are looking to see if it has spread (scans, MRI's);  is it contained?  Again, take your time.  The decision you make is your decision.  Try to keep Quality of Life issues in front of you.  What can you do now?  Well, you are already doing somethings.  Absolutely, you need to get in the best shape that you possibly can.  You will hear about kegel exercises for men.  So, I will leave you with this about me:  69 years old; Gleason 4+3=7;  RARP 3/18;  Status:  PSA undetectable;  Fully continent; ED 75% recovered no add-ons (Viagra, Cialis).  Good luck on your journey.

Jim1961
Posts: 12
Joined: Sep 2019

Welcome to the group no one wanted to join.  But we're very fortunate to have many experienced cancer survivors who can share their experiences and stories.  Dave and VG make excellent points in getting additional testing.  I was diagnosed 9/4/19 with a Gleason 8 (4+4) Gleason 8 (3+5) and a Gleason 6 (3+3).  PSA 4.5 with BS and MRI negative.  Had surgery 11/25 and I'm in the process of healing.  For what it's worth, I would research to find the best treatment facility and get a second opinion.  It's devastating news at first but take a deep breath, get further testing and decide on a team that has had success in dealing with PCa.  I'm 57 and lighterwood67 makes some great points in his response.  We are all here for you and wish you the best!  God Bless!

Jim

Josephg
Posts: 229
Joined: Jan 2013

I fully agree with the recent comments on NOT getting a Lupron injection at this time.  Please note that none of us in this Forum are medical doctors, and the suggestions or recommendations that we give are purely layperson suggestions and recommendations, based upon our own research and personal PCa journey experiences.

My recommendation is that you FIRST find and consult with an Oncologist, one who specializes in Genitourinary Oncology, if possible.  An Oncologist is best suited to help guide you through the decisions that you will need to make in the near future regarding your treatment options and plans.  Typically, the Oncologist won't be heavily leaning toward either surgery or radiation treatment options, as they do not have a vested interest in either treatmant option.  Further, they will be able to provide you with information that you can use (in addition to your own personal research, as recommended by folks responding to your post in this Forum), in order to make the decisions that you will need to make.

Last, your Oncologist will remain with you for the long term on your PCa journey, whereas the prostatectomy surgeon or radiation doctor, will in many cases only be with you during the treatment phases themselves.  I have been through prostatectomy surgery, salvage radiation, and hormone therapy (Lupron), all administered by different specialists, but the one constant on my PCa journey through it all and into the future has been my Oncologist.

Try not to freak out, as folks in this Forum have recommended (I know, a lot easier said than done), as the best decisions are made with a clear and open mind, and based on the best available information.

I wish you the best of outcomes on your PCa journey, and the folks in this Forum are ALWAYS available to give you their layperson thoughts and recommendations, based upon their own research and personal PCa journey experiences.

Georges Calvez
Posts: 463
Joined: Sep 2018

Hi there,

As I say above, wait and see, after the scans you will know where you are and you can make decisions.
I would not begin any hormonal treatment before the scans or making a decision on treatment and I would try and do them as quickly as possible.

Best wishes for the results,

Georges

Kitafloyd
Posts: 12
Joined: Dec 2019

Wow guys. Thank you all very much for your replies. I'll share the results of the scans or any other info and keep you all posted. It's good to know that there's others who've had to travel down this road.

lighterwood67's picture
lighterwood67
Posts: 264
Joined: Feb 2018

Leuprolide is a Gonadotropin Releasing Hormone (GnRH) agonist (or LHRH agonist). Leuprolide is available under the brand names Lupron® and Eligard®. It is indicated for use as a palliative treatment option for individuals with advanced prostate cancer.  In my opinion, make sure you get second opinions, especially on the Lupron.  Just don't think you have  had a thorough evaluation to get a Lupron shot.  Good luck on your journey.

ufknkidding
Posts: 45
Joined: Aug 2019

Hello Kitafloyd.  Sorry to hear about your diagnosis. We all shared a similar moment in our lives and it was incredibly stressful.  It's great you found this board and all these survivors, so rest assured, you are NOT alone.  One other good resource to those already mentioned is http://yananow.net

I am early 50s, had RARP in 09/2019, and on the road to regaining urinary continence and erectile function.  Good luck on your Monday meeting.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3489
Joined: May 2012

Kit,

You have received a huge response above.  There is nothing stated that I disagree with.  A rough, partial summation is as follows:

(1) Presumption that you have metastasis given your particulars would be the norm among most oncologists; 

(2) Beginning HT would be a nearly automatic response, but if the guys say wait on the bone marrow scan, it is undoubtedly good advice, but your doctor, of course, will make the decision.  It won't take long to get into an emergency bone marrow scan anyway. 

(3) Scans of ALL types are of limited use for PCa (prostate cancer), and FALSE NEGATIVES are very routine; a scan seeing PCa tumors means signifiicant metastasis;   

(4) the curative therapies for PCa are surgery and/or radiation, but in cases of metastasis, radiation (RT) is much more effective than surgical removal (RP), which is usually regarded as only palliative and secondary in effect to area radiation.   HT also is palliative and neoadjuvant, as stated above; it is not by itself curative;   

(5) fear or rushing matters is counterproductive and unnecessary in PCa, because a few weeks wait for other testing and results is clinically usually of no detriment or additional risk. Ten years ago, I was diagnosed with advanced, widespread Lymphoma, and it was over two months of testing, meeting experts, etc., before I ever received my first chemo infusion, which is the only form of treatment for most Lymphomas (Note:  chemo is a relatively RARE treatment against PCa, and like HT, palliative only against PCa); 

(6) a second opinion and selecting an expert in PCa is critical in cases of advanced disease.

(7) We are not doctors or certified medical professionals.  You must choose an expert whom you trust and go from there.  But most guys value the support, feedback, and friendship they receive here deeply.

max

Kitafloyd
Posts: 12
Joined: Dec 2019

Thanks again to all who've responded.

I've been doing the HCP dance for most of the day to get the best Urilogical Oncologist that i could find.

So now another PCP visit (new one) on Wednesday so I can hopefully get an expedited referral to see the guy I want as well as the MRI/CT/Bone scans.

The waiting is the most excruciating part while I'm trying not to freak the hell out everytime I feel any lower back pain or some other weird feeling "down there".

I did get a copy of my Biopsy results.

A - F) Right Side - Benign

G) Left Base - Adenocarcinoma, Gleason 8 (4+4) involving one of one core and 25% biopsy

H) Left Mid - Adenocarcinoma, Gleason 6 (3+3) involving one of one core and 80% biopsy

I) Left Apex - Adenocarcinoma, Gleason 6 (3+3) involving one of one core and 35% biopsy

J) Left Lat Base - Adenocarcinoma, Gleason 7 (3+4) involving one of one core and 75% biopsy

K) Left Lat Mid - Adenocarcinoma, Gleason 7 (4+3) involving one of one core and 75% biopsy

 

On a personal note, I had a vacation planned the day after Xmas to go to Thailand and Cambodia (Angor Wat) with my better half. Planned on staying until mid January. PCP says to go because who knows when I'll get the chance to again. Oof. Staying generally positive though and super thankful for the support.

lighterwood67's picture
lighterwood67
Posts: 264
Joined: Feb 2018

To me, taking that trip would be quality of life adventure to me.  Go.  Been to Thailand many moons ago when I was in the Air Force.

 

Kitafloyd
Posts: 12
Joined: Dec 2019

It is by far one of the most beautiful places I've been. The Thai are among the kindest friendliest folks I've ever encountered. This will be my 6th time there. I count my lucky stars that I've been able to travel extensively in my lifetime.

Steve1961
Posts: 301
Joined: Dec 2017

what exactly does the percentage involvemdnt mean ..some are 20 % some are 40 some are 80 ..I know the higher involvement is not good but what does that mean exactly..does anyone know .i thought it meant that the needle hit the tumor directly the % would be higher instead of close around it ..lam I wrong 

VascodaGama's picture
VascodaGama
Posts: 3234
Joined: Nov 2010

Floyd,

I would follow the recommendation of your PAP and go visit the Indochina. Your present status wouldn't change till your return and now you are free from the side effects of treatments. You can try doing the scans before the trip and get a final answer from the doctors on your return with the results of the image studies in hand.

In the above biopsy report, the Gleason 8 (4+4) found at the base of the prostate (just under the bladder) is the area close to the seminal vesicles. This makes me wonder if the vesicles are infested. Gs8 guys with SV invasion have high probabilities for spread. The MRI may provide the answer.

Best wishes,

VG

Kitafloyd
Posts: 12
Joined: Dec 2019

Yeah I've been wondering about that possibility as well. Just accepting it and moving forward as the info comes in.

Georges Calvez
Posts: 463
Joined: Sep 2018

Hi there,

On the basis of that biopsy I think a score of 8 is a bit high.
There is only one core that got an 8 and the proportion of that core was not very high.
If the core had been shot in a different place it could have come out differently.
Biopsies are not an exact thing, we have had people on here that have had one or two negative biopsies before a positive one, etc.
You obviously have a fairly extensive tumour but it seems to be restricted to the left side of the prostate.
I think a fairer score would be a 7, most likely a 7b (4+3) but maybe a 7a (3+4).
You have a lot of grade 3 material and only a comparatively small amount of grade 4.
I would stop worrying about pains here and there and wait for the results of the scans.

Best wishes,

Georges

Clevelandguy
Posts: 591
Joined: Jun 2015

Hi,

Another vote for going on the trip, sounds like a good thing to do before the test results & decisions. You could get a second opinion to re-grade your biopsy samples if you think that is needed.  With that said I would trust the  x+x numbers you get from your doctors and compare. We are not doctors on this board and a trained professional will be able to give you the proper answer based on their expertise and not a "I think" guess.

Dave 3+4

Kitafloyd
Posts: 12
Joined: Dec 2019

Thanks for the reply Dave. I'll bring it up to the Doc and see if a reassesment of the biopsy is possible.

 

Josephg
Posts: 229
Joined: Jan 2013

I agree with the folks recommending that you keep your plans and make the trip to Thailand and Cambodia.  In my own case, when I was initially diagnosed with PCa, I already had a week-long camping trip planned for the next week, a camping trip that I made every year for 36 straight years.

Sitting on the shore of the island that I had reserved exclusively the folks joining me on the camping trip, I watched the sun rise in the morning and set in the evening for a number of days.  I reflected on my newly discovered PCa diagnosis, and I had plenty of uninterrupted time to think about things, sort them out, prioritize them, and put them into the proper perspective with everything else going on in my life.

I found this contemplation time, in a place far away from home, to be invaluable in achieving my peace of mind, and it helped me tremendously to shift my life's perspective, and accept the fact that I would be embarking on this PCa journey.

Go on your scheduled trip.  I guarantee that you won't regret it.

Georges Calvez
Posts: 463
Joined: Sep 2018

Hi there,

Sadly Gleason Scores can be interpreted in different ways and pathologists have changed those ways often upgrading the scores.
Thus Kitafloyd is a Grade 8 on the basis of the highest needle biopsy sample found but he would be a Grade 7 on the basis of a Global Score which takes into account all of his scores.
There is also fairly poor agreement between the score found by biopsy and the score found when the pathologist has your prostate in hand and is slicing and dicing it.
If Vasco was to be graded today he would be given a 6 instead of a 5, grade 2 has been abandoned so he is grade 6 ( 3+3).
I suspect that my report would be ungraded from a 7b to an 8 as I think they have used a global grade instead of a per needle basis, I will have to take this up with Tigger the next time I see him!
http://www.pathologyoutlines.com/topic/prostategrading.html
https://www.ncbi.nlm.nih.gov/pubmed/30080706
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4779758/

Best wishes,

Georges

Kitafloyd
Posts: 12
Joined: Dec 2019

Thanks for the reply and links Georges (pronounced Hor-Hay right?). Just beginning to understand the Gleason Score grading process.

ufknkidding
Posts: 45
Joined: Aug 2019

It all depends on your personality.  If you tend to worry more than others, have OCD or anxiety, then a trip might just add to the stress you are experiencing from the diagnosis and uncertainty. If you manage worry fairly well, then a trip could be beneficial to help you re-focus.  The PCP commenting who knows when you will be able to go on another trip just added another stressor.  On a totally side but important note, if you have a healthy sex life and trips with your significant other lead to romance, relationship building, and lots of intimacy including intercourse, I'd consider the trip even with the worries.  Partly because some of the treatments you may elect in the future could disrupt your sexual function and the trip will build some wonderful memories that will help you through the recovery phase post treatment.

Georges Calvez
Posts: 463
Joined: Sep 2018

Hi there,

My best advice is to go on your holiday and enjoy yourself.
Prostate cancer treatment is not as bad as some cancer treatments but it can affect your life quite a bit for a while or long term.
So look on this holiday as the calm before the storm and make hay while the sun shines.

Best wishes,

Georges

Trew
Posts: 920
Joined: Jan 2010

Floyd, it takes at least 6 weeks after the gleason nail-gun experience for your prostate to heal.  I remember at the start of that biopsy the doctor telling me to "Relax."  

 

My PSA was never over 12, but my Gleason was 4+4 and 2 months later at the time of surgery it was a 5+4.  

I had positive margins, and had to have radiation, then a year of hormone treatment.  

 

Right now this Dec/Jan I am 10 yrs out from radiation.  It might be helpful to know that.  Take courage.  You are going to meet a lot of interesting poeple!   

Kitafloyd
Posts: 12
Joined: Dec 2019

Thanks for the reply Drew. Good to meet you. Yeah... "Relax" he says. I was bucking like a bronco during mine. 10 years out is fantastic. Good for you. Very helpful, thank you.

Trew
Posts: 920
Joined: Jan 2010

Kit, I have some even better news for you.  

I just read through all the replies to you, all the terms, treatments, and I don't remember even 50% of this stuff.  What used to be everyday terminology for me, I am forgetting it, it is no long vocabulary I use.  I consider that a positive.  Those first 2- 3 years, surgery, radiation, hormone shots, AUS installed- doctors all the time.  After radiation I peed blood for like 5- 6 yrs!  And I couldn't get the AUS until a scaring problem in the urethra was solved.  I was getting scoped up into the bladder every 3 months for over a year, had to do the self-cath routine after surgery to get the scar tissue removed, and .....    I was referred to the U of Michigan and my urologist was a woman.  What an experience, and as I type this I am realizing, all that nightmare treatment stuff is pretty much behind.  I did have some scar tissue problem return last year and had an OR procedure to open up the passageway again, but over time, your vocabulary should return to normal.

 

 

 

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