Dad just diagnosed

monica302009

Tiffany... my dad was 53.

Tiffany... my dad was 53. Gleason score 10 stage 4 pc. Psa 198.... when we found it the cancer was already in all bones knees up. Spinel fluid and bone marrow. I would like to chat more with you. Offer some advice. I miss my dad everyday. Will be a year in august. 

flyerette65

estranged spouse diagnosed with prostate cancer

My estranged spouse was recently diagnosed with prostate cancer.  He does not know Gleason or PSA scores he said his daughter knows all of that.  His daughter had told me that the tumor was well contained and that "they got it all" but then said something about possible liver involvement. She referred to the tumor as a "goombah".Of course I am very concerned but I am especially concerned because of his lackadasical attitude towards his cancer and potential treatment. And I am concerned because his daughter (we both have adult "children" from a prior marriage), may not have enough knowledge to ask the correct questions.

I am a cancer survivor myself. I know that you have to be your own advocate and if a doctor's recommendation doesn't resonate with you then demand another scan, biopsy, whatever.  The radiologist I saw after my chemo treatment ended tried to tell me that a lympocele was unresolved cancer and that I would need 35 external and 3-5 internal radiation treatments.  I demanded a PET scan which showed NED so I declined the radiation.  If I had been a "good little girl" I would have gone ahead with treatment I didn't need.   My husband's attitude that his daughter will take care of everything worries me because he needs to participate in any treatment decisions that may need to be made and I'm afraid his "why do I need to know" attitude might get him into a treatment that he neither needs or wants.  Knowledge is power! I was diagnosed with USPC in May, 2011, which is a rare, aggressive type of endometrial cancer.  My oncologist told me that only 10-12% of women diagnosed with endometrial cancer get USPC. I've had problems in the past year but so far so good.  Since we are still legally married but separated I wonder if I would be out of line in asking to accompany him to his post op appointment.  We are speaking and are talking about a possible reconciliation and went out to dinner before his surgery.  I don't consider us "old", although we are both in our late sixties.  Any advice would be appreciated. Thank you all.

Old Salt

flyerette65 said:

estranged spouse diagnosed with prostate cancer

My estranged spouse was recently diagnosed with prostate cancer.  He does not know Gleason or PSA scores he said his daughter knows all of that.  His daughter had told me that the tumor was well contained and that "they got it all" but then said something about possible liver involvement. She referred to the tumor as a "goombah".Of course I am very concerned but I am especially concerned because of his lackadasical attitude towards his cancer and potential treatment. And I am concerned because his daughter (we both have adult "children" from a prior marriage), may not have enough knowledge to ask the correct questions.

I am a cancer survivor myself. I know that you have to be your own advocate and if a doctor's recommendation doesn't resonate with you then demand another scan, biopsy, whatever.  The radiologist I saw after my chemo treatment ended tried to tell me that a lympocele was unresolved cancer and that I would need 35 external and 3-5 internal radiation treatments.  I demanded a PET scan which showed NED so I declined the radiation.  If I had been a "good little girl" I would have gone ahead with treatment I didn't need.   My husband's attitude that his daughter will take care of everything worries me because he needs to participate in any treatment decisions that may need to be made and I'm afraid his "why do I need to know" attitude might get him into a treatment that he neither needs or wants.  Knowledge is power! I was diagnosed with USPC in May, 2011, which is a rare, aggressive type of endometrial cancer.  My oncologist told me that only 10-12% of women diagnosed with endometrial cancer get USPC. I've had problems in the past year but so far so good.  Since we are still legally married but separated I wonder if I would be out of line in asking to accompany him to his post op appointment.  We are speaking and are talking about a possible reconciliation and went out to dinner before his surgery.  I don't consider us "old", although we are both in our late sixties.  Any advice would be appreciated. Thank you all.

Flyerette: Please start a new thread

Your situation is complex and warrants its own thread to prevent confusion.

Thanks!

Max Former Hodgkins Stage 3

flyerette65 said:

estranged spouse diagnosed with prostate cancer

My estranged spouse was recently diagnosed with prostate cancer.  He does not know Gleason or PSA scores he said his daughter knows all of that.  His daughter had told me that the tumor was well contained and that "they got it all" but then said something about possible liver involvement. She referred to the tumor as a "goombah".Of course I am very concerned but I am especially concerned because of his lackadasical attitude towards his cancer and potential treatment. And I am concerned because his daughter (we both have adult "children" from a prior marriage), may not have enough knowledge to ask the correct questions.

I am a cancer survivor myself. I know that you have to be your own advocate and if a doctor's recommendation doesn't resonate with you then demand another scan, biopsy, whatever.  The radiologist I saw after my chemo treatment ended tried to tell me that a lympocele was unresolved cancer and that I would need 35 external and 3-5 internal radiation treatments.  I demanded a PET scan which showed NED so I declined the radiation.  If I had been a "good little girl" I would have gone ahead with treatment I didn't need.   My husband's attitude that his daughter will take care of everything worries me because he needs to participate in any treatment decisions that may need to be made and I'm afraid his "why do I need to know" attitude might get him into a treatment that he neither needs or wants.  Knowledge is power! I was diagnosed with USPC in May, 2011, which is a rare, aggressive type of endometrial cancer.  My oncologist told me that only 10-12% of women diagnosed with endometrial cancer get USPC. I've had problems in the past year but so far so good.  Since we are still legally married but separated I wonder if I would be out of line in asking to accompany him to his post op appointment.  We are speaking and are talking about a possible reconciliation and went out to dinner before his surgery.  I don't consider us "old", although we are both in our late sixties.  Any advice would be appreciated. Thank you all.

Indeed

 

Unless you get the clinical specifics of your ex's biopsy and treatment(s), there is next to nothing of insight that the guys here can contribute toward understanding his situation. 

For instance, the statements "they got it all" but "possibly has liver involvement" do not logically go together at all regarding prostate cancer.

max

flyerette65

Max Former Hodgkins Stage 3 said:

Indeed

 

Unless you get the clinical specifics of your ex's biopsy and treatment(s), there is next to nothing of insight that the guys here can contribute toward understanding his situation. 

For instance, the statements "they got it all" but "possibly has liver involvement" do not logically go together at all regarding prostate cancer.

max

Thanks Max.

Thanks Max. I know from my own experience how important pathology reports, staging and grading are. I can't believe that the ex would be "playing ostrich" by sticking his head in the sand and not being at all concerned about his disease.  I will start a new thread. And good luck to all of you. 

Tiffany you have my prayers and thoughts for your dad.  He is very lucky to have you!

 

tiffany2015

monica302009 said:

Tiffany... my dad was 53.

Tiffany... my dad was 53. Gleason score 10 stage 4 pc. Psa 198.... when we found it the cancer was already in all bones knees up. Spinel fluid and bone marrow. I would like to chat more with you. Offer some advice. I miss my dad everyday. Will be a year in august. 

Would like to chat more

Hi Monica302009,   I would love to chat more with you and receive and advice you can give.  I am sooo sorry for the loss of your dad.  I cant imagine but unfortunately it is something I am afraid I will have to endure.  My prayers and thoughts are with you!

tiffany2015

Been away for a while

Hi all, I am sorry I havent responded lately. I truly appreciate everyone taking the time to provide insight, words of encouragement, advice and just being someone to go through this unfortunate journey with.  I pretty much just took time away from the internet and been spending alot of quality time with my dad and family.  My father is getting ready to start his 4th round of taxotere next Tuesday.  I am actually taking him for scans on Friday to see what is going on with the cancer.  We will get the results on Tuesday before his chemo begins.  I have went through every stage imaginable during this process with my dad.  My dad seems to be ok with what he is dealing with and still has continued to keep an upbeat spirit, while i tend to be angry with the whole situation.  But I do not reflect my unhappiness of him having to go through this to him.  The chemo has really just beat him up.  He was always this big strong man that worked in construction and would work from sun up to sun down.  Since being on this chemo I have seen him go from that man to a fraile, out of breath, sick man.  It literally breaks my heart.  We have had to discuss death in very candid conversations.  My grandmother (dads mom) died from breast cancer several several years ago and he told me that as he watched his mother go through chemo he told himself he would not if he got cancer.  Well here we are and hes going through it.  I once asked him why he chose to do chemo and he told me because of his kids and grandchildren.  He said he feels like if he doesnt do it then hes giving up.  The selfish part of me wants him to do it whatever it takes to keep him here, but the unselfish part of me told him that if he couldnt go through chemo anymore that I would understand and would know he fought like hell to overcome this.  I am rambling at this part I am sure so I will let you all go.  I hope that each of you are having a wonderful day!

tiffany2015

flyerette65 said:

Thanks Max.

Thanks Max. I know from my own experience how important pathology reports, staging and grading are. I can't believe that the ex would be "playing ostrich" by sticking his head in the sand and not being at all concerned about his disease.  I will start a new thread. And good luck to all of you. 

Tiffany you have my prayers and thoughts for your dad.  He is very lucky to have you!

 

Thank you flyerette65! 

Thank you flyerette65! 

tiffany2015

Rakendra said:

Toxic drugs

No one can really give sure advice.  One can only give opinion and personal experience.  Mine is that in this case (NOT harmsgal), I would not accept any treatment until i personally investigated all the side effects, what per cent of patients are helped, what per cent of patiens are killed by the treatment, and every aspect of treatment.  Treatment with these highly toxic, unproven, and expensive drugs is chancey at best in your father's situation.  Sure, some are going to be helped, but many others are going to suffer horrible side effects and possibly have curtailed life.  And if the severe pain starts extended life is not going to be an asset.  Whether help or not, these drugs WILL decrease quality of life, but are sold on the basis of (maybe false) hope of a cure or life extension.  Sure, there maybe some who are very much helped, but the many more who suffer and die are not here to refute the success stories.

   My experience having very advanced stage 4 bone matatstases is to do nothing with the doctors but a lot with diet, meditation, exercise, and spiritual inner work.  I am not looking at or for the future.  My goal is to make every second, every minute, every day full of gratitude for all I have been given and to spend as much quality time as possible not only with my loved ones, but also with all my brothers and sisters in the Family of Man.  I live totally in the moment  and totally in the love space.  My suggestion is to not be much concerned with doing things which may be negative and only add false hope and suffering,  but, rather than doing, concentrate on being - being in the moment, being in the love space, being in harmony with nature and loved ones and being grateful for all that is happening, even if you do not like it.  love, Rakendra

Thank you so much Rakendra

Thank you so much Rakendra for sharing your story and experiences.  I have tried to show my dad all the results and research I found regarding chemo and hormone therapy but he feels that if he doesnt do chemo he is giving up and I cannot make him see otherwise.  So at this point I am just trying my best to respect his wishes and live in the moment.  At this point we are three rounds in with fourth round coming up and the three weeks in between each chemo session I see his health deteriorate.  He only has about 5 good days and then he starts chemo again. 

flyerette65

tiffany2015 said:

Been away for a while

Hi all, I am sorry I havent responded lately. I truly appreciate everyone taking the time to provide insight, words of encouragement, advice and just being someone to go through this unfortunate journey with.  I pretty much just took time away from the internet and been spending alot of quality time with my dad and family.  My father is getting ready to start his 4th round of taxotere next Tuesday.  I am actually taking him for scans on Friday to see what is going on with the cancer.  We will get the results on Tuesday before his chemo begins.  I have went through every stage imaginable during this process with my dad.  My dad seems to be ok with what he is dealing with and still has continued to keep an upbeat spirit, while i tend to be angry with the whole situation.  But I do not reflect my unhappiness of him having to go through this to him.  The chemo has really just beat him up.  He was always this big strong man that worked in construction and would work from sun up to sun down.  Since being on this chemo I have seen him go from that man to a fraile, out of breath, sick man.  It literally breaks my heart.  We have had to discuss death in very candid conversations.  My grandmother (dads mom) died from breast cancer several several years ago and he told me that as he watched his mother go through chemo he told himself he would not if he got cancer.  Well here we are and hes going through it.  I once asked him why he chose to do chemo and he told me because of his kids and grandchildren.  He said he feels like if he doesnt do it then hes giving up.  The selfish part of me wants him to do it whatever it takes to keep him here, but the unselfish part of me told him that if he couldnt go through chemo anymore that I would understand and would know he fought like hell to overcome this.  I am rambling at this part I am sure so I will let you all go.  I hope that each of you are having a wonderful day!

Hope and Attitude

Tiffany,

Sounds like your dad is taking it all in stride. Looking back now, it all seems surreal and we just have to deal with the hand we're dealt in life, as much as that sucks sometimes. I know how chemo can "knock you to your feet" as I have been throught it myself.  Had to get "hydration" "treatments, Neulasta injections and got pneumonia 3 times during the course of treatment.  The tiredness is the worst and nothing was done to help me get through that aspect.  You are giving your father a lot of what he needs,  by loving him, hugging him and talking to him.  I just lost my 94 year old mom to metatastic breast cancer back in June. She was diagnosed at age 82 and had a metastisis to her small bowel in 2013. I have to tell you that I'm so grateful I was there with her and kept her in my home until the end.  We had some great conversations and I encourage you to just keep the communication going.  I know how hard it is watching anyone suffer with cancer.  I would leave the room and cry.    Looked like a rabbit sometimes with my pink eyes and Tammy Faye Baker with streaks of eye make-up running down my face at others. Try to keep your spirits up as well.  I know you just want to cry sometimes and that is ok. I hate cancer so much and I wish a cure would be found for all cancers.  I do know someone who had aggressive P.C. and it was all ready in his spine when it was discovered but he lived (and I know this is almost impossible to believe) for almost 10 years and enjoyed life and had good quality of life until about a year before his death so there is hope.  Only God knows what will happen with your dad.  I'm not a particularly religious person but there is comfort to be found in believing.