Just Diagnosed Gleason 8

Kitafloyd
Kitafloyd Member Posts: 12
edited December 2019 in Prostate Cancer #1

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.

«1

Comments

  • icemantoo
    icemantoo Member Posts: 3,360 Member
    Gleason 8 on August 1, 2019

    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

  • eonore
    eonore Member Posts: 125 Member
    edited December 2019 #3
    New diagnosis

    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

  • VascodaGama
    VascodaGama Member Posts: 3,512 Member
    "Is there anything I can do ?"

     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
    Kitafloyd Member Posts: 12
    icemantoo said:

    Gleason 8 on August 1, 2019

    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

    Thank you for your reply

    Thank you for your reply iceman.

  • Kitafloyd
    Kitafloyd Member Posts: 12
    edited December 2019 #6
    eonore said:

    New diagnosis

    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

    Thanks for your reply Eric.

    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.

  • Kitafloyd
    Kitafloyd Member Posts: 12
    edited December 2019 #7

    "Is there anything I can do ?"

     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

     

    Hi VG, Thanks for your reply

    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
    Kitafloyd Member Posts: 12
    Kitafloyd said:

    Hi VG, Thanks for your reply

    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.

     

    I wanted to add that my

    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
    VascodaGama Member Posts: 3,512 Member
    Kitafloyd said:

    I wanted to add that my

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

    Lupron ASAP... .. for what?

    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
    Clevelandguy Member Posts: 767 Member
    Moving too fast

    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
    lighterwood67 Member Posts: 324 Member
    Welcome

    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
    Jim1961 Member Posts: 14
    Welcome

    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
    Josephg Member Posts: 317 Member
    Next Step

    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
    Georges Calvez Member Posts: 546 Member
    Wait and see

    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
    Kitafloyd Member Posts: 12
    Wow guys. Thank you all very

    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
    lighterwood67 Member Posts: 324 Member
    Lupron Palliative

    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
    ufknkidding Member Posts: 45
    That word - cancer

    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
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member

    That word - cancer

    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.

    Summation

    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
    Kitafloyd Member Posts: 12
    Thanks again to all who've

    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.

  • VascodaGama
    VascodaGama Member Posts: 3,512 Member
    edited December 2019 #20
    Have a good trip

    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

  • lighterwood67
    lighterwood67 Member Posts: 324 Member
    Kitafloyd said:

    Thanks again to all who've

    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.

    Quality of Life

    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.