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Being candid vs being evasive

flyerette65
Posts: 65
Joined: Oct 2014

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.  I do know that "getting it all" and possible liver involvement do not make any sense.  If there is indeed liver involvement that's not a good situation. 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 two weeks ago. I don't consider us "old", although we are both in our late sixties. Any advice would be appreciated. Thank you all.

Swingshiftworker
Posts: 1013
Joined: Mar 2010

I you still love your husband and are concerned about his well-being (even if you are still separated), it certainly seems to be that you have a "right" to be involved in the diagnosis and treatment of his PCa.  Of course, that all depends on whether your husband wants you involved or not.  All you can do is express your concern and desire to be involved and see what he says.

As Max said in the other thread, it makes no sense for his daughter (your step-daughter?) to say that the PCa is contained and then say there is liver involvement.  If there is liver involvement, the cancer has spread beyond the prostate and the prognosis is NOT good.  If this is the case, he is probably a Gleason 9 and very likely has a highly elevated PSA but. at this stage, treatment is pretty much limited to chemo and hormone therapy.  Localized radiation treatment may be possible but not very useful if the cancer has already spread throughout his body. 

But rather than speculate about his condition, it would be best for you to speak directly with his physicians to get a precise explanation of his status.  As a cancer survivor yourself, you should know what info you need and what questions to ask.  Good luck!

flyerette65
Posts: 65
Joined: Oct 2014

Thanks for the advice Swingshiftworker.

You are correct, I do know the information that's needed and the questions to ask.  That is why I should be the one to go to his follow-up appointment with him.  I also just lost my mom to metatastic breast cancer in June.  I was her sole caregiver for much of the time, with an assist from Hospice at the end. I was also her advocate and accompanied her to her doctor appointments, tests, etc. So I probably have more knowledge than the average person, especially someone who has never dealt with cancer.  I will offer, we'll see what happens.

Old Salt
Posts: 720
Joined: Aug 2014

Privacy issues (HIPAA) play a role here. I am not sure that a spouse (whether estranged or not) has rights in this context without (oral or written?) approval of the other spouse. I recommend that you research this issue further.

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