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Just Diagnosed with Prostate Cancer

Bill325
Posts: 5
Joined: Feb 2019

I just came back from the doctors today and my biopsy shows I have prostate cancer.   My PSA is at 9, but my gleason scores came in at 6,8 and 9.  Getting a CT scan and Bone Scan to determine if it has spread.  I have not any any issues nor has my PSA been above 4 prior to last October when it came in at 6, the 7 and now 9.  No other health issues and this came as a surpise .  

Georges Calvez
Posts: 158
Joined: Sep 2018

Hi Bill and welcome to the club that no one wants to join,

Could you tell us a bit more about your Gleason scores and any other details that you may have?
Have you got an MRI scan scheduled as well?
You will need treatment with scores like that but what kind is dependent on other factors like your age and the results from your CT and bone scan but you probably know that already.

Best wishes,

Georges

Bill325
Posts: 5
Joined: Feb 2019

I am getting a CT scan scheduled for my prostate and bones.  The report has 12 diagnosis on it.  5 have prostatic adenocarcinoma of 9 (Grade Group 5), 2 with Prostatic adenocarcinoma of 8 Grade Group 4, 1 prostatic adenocardnoma of 6 Grade Group 1, 3 with Benign Prostatic tissue and 1 with adjacent to high-grade prostatic intrapithelial neoplasis.

Since this is all new to me, I have no idean what this means.  The DR, said we have caught it very early, but you never know.   Surgery is an absolute, we just have to see if it has spread.   I have no other health issues, age 66 and am very active.

Georges Calvez
Posts: 158
Joined: Sep 2018

Hi Bill,

That is pretty much the long and the short of it.
Gleason 9 cancers are very invasive so it is an if to see if it has not formed metastases anywhere else.
Radiation may also be a possibility and you will find the pros and cons of prostatectomy versus radiation endlessly discussed in the prostate cancer survivors communities as most of us have had one or both of them and some like myself have managed to do the double.
You may be able to have nerve sparing surgery that may leave you able to have an erection if you still have that ability although at your age it is around 50:50 that you will recover this ability.
Incontinence is a bit of a luck of the draw, most of us leak terribly for a few months then get better so that 90% are completely leak free after a year, a few continue to leak and need pads or further treatment depending on the severity.

Best wishes,

Georges

Bill325
Posts: 5
Joined: Feb 2019

Thanks, we will see what the the ct scans say.

Georges Calvez
Posts: 158
Joined: Sep 2018

Hi Bill,

I hope that it is confined in which case you should be home free after treatment.
Even if it is not confined there is still an excellent chance of a cure or holding it for many years.
The vast majority of men, even very serious cases, that have prostate cancer die with the disease rather than of it so no need to worry yet.

Best wishes,

Georges

SantaZia
Posts: 64
Joined: Apr 2018

Bill sorry that you have to go through this.  I would receommend that you continue to get as much information as you can. I would have John Hopkins review your biospy and provide you an additional pathology interpretation.  This is only $250 and should be cover by your insurance http://pathology.jhu.edu/ProstateCancer/NewGradingSystem.cfm Also you can use those biospy slides for genetic testing. I would recommend at least a TPEN test as that will let you know if you have an agressive cancer.   I used a couple of tests and both were covered by insurance. As was a T3MRI to find locate and rate the tumor.   Now there is a broadspectrum test for more targeted treatment for advance cancers However you won't need this right now, but just so you know.  In 2018, a new genetically based drug was approved by the U.S. Food and Drug Administration to fight cancer: Vitrakvi, a medication for adults and children whose cancers have a genetic mutation called TRK fusion. Also late last year, Keytruda, an immunotherapy drug, received expanded approval by the FDA to fight malignancies that bear a specific genetic signature. Oncologists will have to know the genetic makeup of a tumor to prescribe these drugs, but only 12 percent of patients with late-stage metastatic cancer are getting the tests, according to a report on the genetic testing company, Foundation Medicine, in the MIT technology review. Also pick up a copy of The Key To Prostate Cancer https://www.amazon.com/Key-Prostate-Cancer-Experts-Explain/dp/0999065211 Even if you have an advance form of PC it is much better to take some time now to understand what your best treatment options might be. Good Luck!

 

 

lighterwood67's picture
lighterwood67
Posts: 152
Joined: Feb 2018

Welcome to the oh crap club.  There are a lot of options that will be presented to you.  You have time to weigh them out.  I selected what I call the AT option (Active Termination).  I selected the RP Davinci procedure because my surgeon felt the cancer was contained.  In fact, he biopsied some of the prostate where he had concerns prior to proceeding with the actual removal. They removed my prostate; performed a bladder neck reconstruction; and pelvic lymph node dissection. I am 68; my gleason score 4+3=7; surgery 03/20/2018.  Be sure that you understand the potential side effects of the treatment option you select.  I can speak to the RP.  Initially incontnient; ED; urethra shortening (permanent)..  Coming up on my 1 year point.  I am fully continent;  I am weaning myself off of Viagra/Cialis.  I am able to have sex at this time.  More importantly,  my PSA is undetectable and there is no evidence of disease.  You are going to hear success stories and horror stories on this site.  But I can tell you this.  There are a lot of very knowledgeable folks on this site.  Much more than me or probably much more than I will ever be.  I have a lot of respect for these folks who day in and day out take the time to comment, provide insight into this cancer.  I can only comment on me.  I am the expert.  I experienced the surgical (RP).  I pass my info on as much as I can.  Just remember the decision you make for treatment is yours.  Good luck to you on your journey.

VascodaGama's picture
VascodaGama
Posts: 2911
Joined: Nov 2010

Bill,

Prostate cancer is usually a surprise to the many of us that went through the screening via PSA blood tests. It is rarely linked to symptoms unless the situation relates to wide spread probably already affecting other organs. The CT and the Bone scan will provide you with more information on the situation but these exams do not identify small size lesions/metastases. In other words, the results from these scans may be false negatives of a more advanced case. Gleason grades 4 and 5 (Gs9) are in fact risk cases that need wise decisions. Surgery is proper when the cancer is contained otherwise the procedure would only debulk the big tumor (the whole gland) leaving untouched areas that may be also affected. Radiation therapy could be more apropriate.

In your shoes I would get second opinions from other specialists before making a decision.

Best wishes and luck in this journey.

VG

graycloud
Posts: 28
Joined: Jan 2018

I know your emotions are all over the place right now.  Breath, start your research to find the best prostate cancer treatment centers.  My husband was diagnosed fall of 2017.  Initially Gleason 7.  But additional testing from John's Hopkins, Memorial Sloan Kettering, and Mayo upgraded to a Gleason 9.   His was caught early - with no involvement outside the prostate or lymph nodes.

After research, our decision was to go to Memorial Sloan Kettering in NYC (We live in the SE).  Dr. Behfar Edhaie was my husband's surgeon/oncologist.  At MSK,  had access to bladder specialist and ED specialist both pre and post surgery.   Robotic,  nerve sparing surgery was done 1/31/18 to remove the prostate, lymph nodes, bladder neck reconstruction, etc. 

My husband is doing great - he's cancer free!  Incontinence issues were temporary.  He walks 5-7 miles daily, weights 3 days a week, rowing, back to riding a bike now.  Super active.  ED issues - he's fine now.  As his doctor said, it's a process after surgery that takes patience and time for healing. 

Read my one year story I wrote a few days ago.

Do you research, talk with multiple high volume prostate cancer treatment centers.  Look at their protocols for pre and post surgery. 

Also, start walking every day - get healthy/in shape now - best physical shape of your life.  Not only will it increase blood flow to the areas you need pre-surgery, it will ease your mind.  Also, another word of advice - keep you loved ones close.  Include them in your conversations - your lows and your highs.  I don't think I've ever mentioned this online, but my  husband starting writing letters to me some daily/some weekly.  These letters expressed his feelings and gave him an outlet.  It gave me a new perspective too.  We both started walking together to get him in shape - he's lost 60 pounds/i lost 20 pounds.  But mostly it brought us closer together on an emotional level too.

Keep the faith.  Stay focused on getting healthy and getting your body and mind ready to fight!

VascodaGama's picture
VascodaGama
Posts: 2911
Joined: Nov 2010

Bill,

I read your other thread but I will comment here in your initial thread as it got more of your story. You have inquired about the differences between chemo and radiation, and Max gave you a good opinion that "Radiation is potentially curative against PCa ... ... Chemotherapy is not curative against PCa, and is mostly used against it as a palliative treatment".

However, you also describe in the other thread that your doctor told you;

" ...  he felt it was wise to go ahead (with surgery) and remove the nerves as well.  Also, probably to do radiation, but would know more once he does the surgery. I know this is just the beginning, but I felt much better know that it has not spread (for the negative CT and MRI results). He felt we caught if very early."

In such regard I wonder what another urologist and/or radiotherapist would suggest to you. In my opinion your doctor's comments tells me that he is not sure that surgery is your best choice, so that he recommends his trade as a surgeon. This is in fact typical of urologists in recommending surgery as much as radiotherapists recommend radiation. We the patients are the ones to decide on an option which should be done consulting various specialists. Remember that whatever you chose you will have to sign an agreement before the intervention, relieving the doctor from any wrong result from the choice one made.

Surgery is preferred when the cancer is whole contained or when the case shows to be much aggressive so that one tries to remove the bigger tumor (the whole gland) that is followed by adjuvant radiation plus ADT (Max's comment in your other thread). In your shoes I would request from your doctor a clinical stage with more precise information now not as vague as he comments in "... would know more once he does the surgery..." 

Treatments all have side effects prejudicing the quality of life of the patient forever. One should be wise and do the less harm possible. Your case may be proper for radiation alone, avoiding the risks from surgery. I would get second opinions and better exams before deciding.

Best wishes and luck in this journey.

VGama

 

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