Stage 4 prostate cancer

Hi i have joined this group as i have a partner who was diagnosed with stage 4 prostate cancer in March and would like to have more understanding so i can support him.

[Rich_Rad]

Hi there! Welcome to this group of bravehearts! It is helpful if you can post some specifics of your partner’s diagnosis in your profile. That way you don’t have to post every time. There are so many variables and many different markers to describe prostate cancer. Knowing things like Gleason scores, PSA levels, location and type of metastasis, etc. look at others profiles as a guide.

Wishing you both well. There is a tremendous amount of rich information here! The more you can share, the more you will receive!

Rich

[Hidden in reply to Rich_Rad]

Thank you Rich i will update my profile but to be quite honest the information we were given was very limited and i think it was becaus there was so much focus on the Corona Virus Pandemic.

Take care

[fluffyfur in reply to Hidden]

You need to demand answers from docs and educate yourselves as much as you can. JMO.

[Hidden]

Welcome! And heartfelt good wishes to you both.

[Hidden in reply to Hidden]

Thank you, much appreciated.

[Magnus1964]

Welcome, your partner is at a scary time. First Diagnosis brings on a lot of decisions and making the right ones are crucial.

Can you give some details on his diagnosis/treatment so far?

[ctarleton]

As a medical foundation, this Patient Guide might be useful to you both as time goes by.

nccn.org/patients/guideline...

In my experience, the feelings, mental aspects, coping with side-effects, etc., have been just as important as the purely medical stuff. This forum is a good place to deal with all those "other side of the coin" types of things.

Of course, all the obvious and not so obvious things will be coming up in your partner's life and in your relationship. I found that the more I could talk, express emotions, give big hugs, do practical things, etc. the better. Typical topics that came up for me (and my Spouse) were:

"Mortality" and dealing with an incurable diagnosis.

Initial sadness, fear, anger, etc. that any such diagnosis would trigger.

The counterpart emotions for one's primary caregiver and loved one(s).

"Shoulda-woulda-coulda" ruminations about a Past that is now gone, and which generally tend to increase suffering.

Learning the benefits of appropriate Forgiveness in one's life, ... for others, and sometimes for one's self.

Comparable overly-Anxious Speculation about what may or may not happen in an imaginary Future that is not real and has not happened yet. (I remember suffering way too much worrying about whether or not I would have some kind of horrid pain, or perhaps a "skeletal related event" in a relatively near future, or toward the end. The reality is often different. Treatments often reduce symptoms. Palliation often puts pain in its place. Etc.)

"Body Image" and "Self Image" issues of who one is in a changing Sexual / Masculine context before diagnosis, during initial treatments, and in later times. This can be a Really Big Deal for some men.

Open communications and better-shared Empathy and Compassion for one another was something I found to be a learning experience. Adding a dash of humor seemed to help, too.

Reevaluations of Roles and Capabilities as life continues with eventually progressive disease and associated changes in physical capabilities.

Routine End-of-Life Estate planning & Health Care-related documentation, hopefully sooner rather than later. (I was surprised by how much just going through this process with a good mediator/trust attorney helped to reveal some latent, unaddressed emotional issues about "what life would be like" for those in an extended/mixed family who would someday survive me.)

A "sorting-out" of what was important and no longer so important in Daily, Weekly, Monthly, Annual life in the revised scheme of things.

A renewed focus on revised Goals and Purpose in one's life and Living More in the Present Moment. Etc. Etc.

Just some thoughts.

[2dee in reply to ctarleton]

What Charles said.

This is the "advanced" group. Over 10,000 men here with experience to help you.

Complete your profile information, educate yourselves, ask specific questions about anything, get useful helpful actionable answers.

2Dee

[MarkBC]

Welcome to the group. The first months after diagnosis are difficult. Lots of emotions, fear, disbelief, sadness, crying, It does get better once you learn more about the disease. It has been over 2 years for me now. Life will never be the same as it was before my diagnosis but it is still quite good. I'm feeling great and loving every day.

You are in a good place here. I am so grateful for the people here who have shared their knowledge and stories. It is comforting to know that I am not the only one dealing with this cancer.

[Scoofer33]

ctarlton could not have done a better job giving you resources and tips on what to expect moving forward! When I was diagnosed in 2015 with Gleason 9 prostate cancer, I was told that only 1 out of 3 men in my same situation would survive beyond 5 years. I was wisely counseled by a friend to make plans for the next five years and when I’d survived those, to make plans for the next five, etc. Thankfully, I’ll have to begin planning again soon!

I say these words to give you hope since the landscape of prostate cancer diagnosis and treatment has changed radically in the past five years. I can only imagine how much further the knowledge base will increase in the next five years! Hold on to hope as things are not as bad as they might seem right now. There will be discouraging losses along the way but you may find that an “attitude of gratitude” can lighten your load and help you bear the grief. Blessings to you and your husband from me and probably all the other guys on this site. We’re glad to have you with us!

[Muffin2019]

Welcome to the warriors of cancer, this site will give you information they do not tell you.

[dadzone43]

I will add my welcome. I do not have advanced PCa but I lead a support group here in Providence RI. HealthUnlocked is loaded with information, often overwhelming rivers of information. This forum is also strong on self-advocacy, on the importance of partners/spouses/SOs in dealing with the medical world and its sometimes opacity. Inform yourselves. I am partial to Mark Scholz The Key to Prostate Cancer (2018). MaleCare.org is an excellent resource. Start a file of medical articles you can share with your oncologist and use as the basis for questions. Ask questions. They are experts on *treatment*. You and your partner are experts on his body. Do not permit the oncologist to be dismissive of your concerns and dismissive of the side effects of treatment. You have to live with those; the oncologist does not. Find a support group. The sharing of information and experience is invaluable as you both tread this pathway.

[j-o-h-n]

to Hidden,

More info needed: age? location? scores psa/gleason? treatments? treatment centers? doctor's names? All info is voluntary but it helps us help you and helps us too. Thank you!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 08/13/2020 6:22 PM DST

[Hidden]

Welcome aboard! It fascinates me how many mostly wifes that we have joining for their man . I appreciate a partners love . This is love and caring. I’m here on my own . I’m surprised a bit that many men don’t look into this cite for themselves. A lot of us are stoic and not much for social media . I understand that . I didn’t find this cite until years after dx.?Great job on his behalf finding us early on. The fear of the unknown is very real initially. But soon by getting info here you won’t be in the dark. Whatever your guy has we have many many with the exact same and many much worse . He can live with an advanced PC for many years if things go right.Time for a health kick for him in my opinion. Please don’t buy into the fear syndrome. Everything he does now is important. The initial phase of treatments for a stage#4 pc is the crunch time leading towards survival . . There is much to be done to increase his odds . The heavy ness of a # 4 dx Can knock us around pretty good .. Anything to limit stressors is needed now. We were in a tail spin until we got on top of the pc... The emotions of hormonally driven cancers are difficult for most to adjust to .. With good professional advice he shall survive . With your love he’s already blessed . Good luck proceeding. Scott 🌵

[NecessarilySo]

Just google it, to start. I just did it and got 5 million results including sites on advanced prostate cancer, metastasized prostate cancer, stage 4 prostate cancer, etc. Also, hunt for books on the subject in online bookstores. Buy a few general ones and scan them for the information you feel is pertinent to your partner's case. Ask specific questions on forums such as this. You will never learn enough.

[Hidden]

Welcome 🙏. I am a spouse too. It’s scary at the beginning of a diagnosis but I promise you if you focus on what is good it eases the angst. Take care of yourself so that you are strong enough to help support his way.

There is so many new approaches and research changing the way APC is being treated. Read reliable science based sources. Ask questions!

These men ( and their partners) are a fountain of knowledge that is so kindly shared to anyone that asks.

Mind and soul maintenance is so personal and unique to each person. Mediation, spending time in nature , losing your self in art or a project or a puzzle etc is essential too.

Mind, Body and Soul healing will give you both the best chance to make it through this.

One day I know you too will share with a new member how you made it thru this uncertainty

Love and light.