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Prostate removed -gleason 9- mestastasized to bone- to begin radiation

swiet3
Posts: 6
Joined: Apr 2021

Hello,

My husband has had his prostate removed but upon the 7 week blood test it had mestastasized to 2 locations in the bone.  He has been diagnosed with an agressive form of prostate cancer and has been placed on the generic of Zytiga, is taking hormone shots & is to begin radiation for the 2 locations in the bone next week.  He has lost hope and belives he only has a 30% chance of living for another 5 years as he saw this on the American Cancer Society site.  he is only 61.  I am hoping to get some informatio from anyone who has been through this and can give us more information.  What to expect, Hope, Successes, Treatments ect.   I am new to this discussion board thing.  I have suffered losses due to cancer throughout the years (mother -breast cancer, cousin - stomach cancer).  My jusband and I have been married for 33 years and I am lost.  I am trying to be positive and strong for him but thinking beyond the daily is too difficult and overwhelming.  I would appreciate any assistance you can provide.  Thank you.   

CMO2021
Posts: 28
Joined: Feb 2021

Hi Swiet3,

 

I am 55 yo with Gleason 9, starting my journey and making a final decision on treatment on Friday.  I would encourage you to get a consult with a  major cancer center in your area if you haven't already done so.  I encourage you to have hope the ACS numbers are just statistics and each person is different. With having only two bone mets depending where they are they maybe spot treat them with radiation with the other external beam radiation. I would also suggest  that you have genetic marker testing done on your husbands prostate tissue samples; depending on the results it could provide additional opportunities for treatment with some of the new immunotherapies. I am not an expert at all or nearly as knowledgeable as others on this forum, but just some of the things I have done as I an evaluting treatment for my aggressive Gleason 9.  I wish you well as you and your husband move forward with your fight against prostate cancer.

 

Best regards,

Chris

swiet3
Posts: 6
Joined: Apr 2021

Hello Chris,

Thank you for your reply.  I greatly appreciate it.  My husband's oncologist did suggest him to have genetic testing (which he has had 2 appointments for now.  I am hopeful that the radiation will eliminate the two spots on the bone and the oral medication they have him on will prevent it spreading further.  They have mentioned that he will be on this medication until numbers start to rise at which time they will switch him to another medication.  I was shocked when he received this diagnosis.  His annual blood test for the prior year showed an elevation in his PSA and this past year it jumped up then COVID hit and everything closed and he had to wait to be seen.  He is very healthy (thin, always active) and I thought "yeah, go get it checked but you are fine".  I was shocked!   I am so sorry you are also being faced with this.horrible disease.  Did you have surgery?  What sort of treatments are you currently using?  Thank you again for sharing.  I am extremely grateful. 

Claudia 

swiet3
Posts: 6
Joined: Apr 2021

Hello Chris,

Thank you for your reply.  I greatly appreciate it.  My husband's oncologist did suggest him to have genetic testing (which he has had 2 appointments for now.  I am hopeful that the radiation will eliminate the two spots on the bone and the oral medication they have him on will prevent it spreading further.  They have mentioned that he will be on this medication until numbers start to rise at which time they will switch him to another medication.  I was shocked when he received this diagnosis.  His annual blood test for the prior year showed an elevation in his PSA and this past year it jumped up then COVID hit and everything closed and he had to wait to be seen.  He is very healthy (thin, always active) and I thought "yeah, go get it checked but you are fine".  I was shocked!   I am so sorry you are also being faced with this.horrible disease.  Did you have surgery?  What sort of treatments are you currently using?  Thank you again for sharing.  I am extremely grateful. 

Claudia 

swiet3
Posts: 6
Joined: Apr 2021

Hello Chris,

Thank you for your reply.  I greatly appreciate it.  My husband's oncologist did suggest him to have genetic testing (which he has had 2 appointments for now.  I am hopeful that the radiation will eliminate the two spots on the bone and the oral medication they have him on will prevent it spreading further.  They have mentioned that he will be on this medication until numbers start to rise at which time they will switch him to another medication.  I was shocked when he received this diagnosis.  His annual blood test for the prior year showed an elevation in his PSA and this past year it jumped up then COVID hit and everything closed and he had to wait to be seen.  He is very healthy (thin, always active) and I thought "yeah, go get it checked but you are fine".  I was shocked!   I am so sorry you are also being faced with this.horrible disease.  Did you have surgery?  What sort of treatments are you currently using?  Thank you again for sharing.  I am extremely grateful. 

Claudia 

CMO2021
Posts: 28
Joined: Feb 2021

Hi Claudia,

I am still in the beginning of my PCA journey.  My PSA was 2.5 ng/ml  in March of 2020 up from 0.9 ng/ml a year early.  I also had blood in my semen around the same time. My primary care thought it was  prostatitis and with COVID raging suggested a follow-up PSA in 6 mo.  Follow-up PSA was 4.1 ng/ml.  Fast forward through URO consult,  MRI and Fusion MRI Biopsy and I was diagnosed with Gleason 9 PCA with multiple G9 cores at the end of March.  I have spent the last month meeting with Radiation Oncologists, Medical Oncologists and Surgical oncologist at Memorial Sloan Kettering. Today,  I have made my decision regarding treatment and will have hormone therapy  with high dose brachytherapy followed by external beam radiation.  I have genetic marker testing pending via MSKs Impact genomic testing  I admit I am nervous but as the surgeon said to me earlier this week the only bad decison you can make is not to do anything.  I am fortunate to have a very supportive wife and family.  Your husband appears to be very fortunate as well to have a caring and supportive wife.   I wish you and your husband well as you move forward in your journey.  In the short time I have been on this board they members have helped me to stay positive and calm.

Best regards,

 

Chris

VascodaGama's picture
VascodaGama
Posts: 3356
Joined: Nov 2010

Hi Swiet3,

Welcome to the board. The genetic test you comment above may help when judging if a treatment is more or lesser effective in fighting his type of cancer. I wonder the extent of the cancer found in the pathological report (after surgery). Can you tell us his PSA histology and the type of image exams done along his diagnosis? How long ago was the prostatectomy done?

PET exams are now the best way to locate PCa metastases. Did his doctor recommend this sort of scan before starting the spot radiation?

Please do not believe those publications predicting life expectancy. I do not know how far your husband's case is advanced but even those with PCa metastases in the lungs (late status cases) manage to live over five years. Survivors here can help you understanding the situation if you provide the particulars of his case.

Best wishes and luck in this journey.

VGama

curren
Posts: 5
Joined: May 2020

Hi Swiet3, I am 63 and was diagnosed about a year ago with gleason score 9  and two bone mestastasies in pelvis area also an agressive cancer. I've gone through the same feelings that you and your husband are going through now. The first thing I would like to say is that the 5 year survival  for our diagnoses is very high and getting better as time goes on. The first thing I did was go to a well known cancer center ( I went to and am still going to the  Mayo Clinic) and got the newest and best treatment avalible. Just the knowing that you are doing the best you can will put your husband in the wright frame of mind for his body to fight the cancer along with the treatments and live a long life. These doctors will be the first to tell you that there is no cure yet for this stage of PC cancer but that does not meen that you can't  live with it for the rest of your life. I encourage your husband fight the fight in his journy.  Aloha,  Peter

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