Dad diagnosed with prostate cancer. w... - Advanced Prostate...

Advanced Prostate Cancer

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Dad diagnosed with prostate cancer. what do I do? hindsight is 20/20 and it wasn’t my battle to fight.

Hereformydad2022 profile image
22 Replies

For those of you who are newly diagnosed or have been diagnosed for a while or caregivers of those who are newly diagnosed or been diagnosed for a while and overwhelmed and confused and you need a care team but maybe lack the resources or support .

go to your nearest hospital that also has a radiology center. Check into the emergency room. Get an MRI.

From there they will admit you and your whole cancer team will walk into your room the next day and guide you on your journey.

Maybe this is fucking obvious? But I wish I would have read this post at the beginning of our journey. Because it was so fucking hard to think straight. May god bless you all. 💗

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Hereformydad2022 profile image
Hereformydad2022
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22 Replies
FormulaRob profile image
FormulaRob

Oh man.. we waited months for my dad to get anywhere here in Canada. This thing blindsided us and we had no idea how to deal with it or where to start. Biopsy, scans , results, treatment .. what a process.

doc1947g profile image
doc1947g in reply toFormulaRob

I was 72 y.o. when I was diagnosed blood cancer and prostate cancer.

Prostate cancer was treated with VMAT-RT 3Gy X 20fx and ADT(Lupron Depot 22.5mg/12weeks X 2).

Blood cancer became Imunoglobulemia deficient.

Was on W & W until November26th 2023 when they started GAMMA IV with 45 g of IgG (Privigen every 4 weeks.

mrscruffy profile image
mrscruffy

Not the path I took but it is doable. My path was far more controlled an systematic in nature

Jimbo47 profile image
Jimbo47 in reply tomrscruffy

Do you mind sharing the path that you took. I received the results of my PSMA/Pet scan this week. I have cancer in the seminal vesicles and it has migrated to the lymph nodes. I have an appointment with a urologist next week. I'm in the shell shocked stage. Any advise that you can offer would be helpful.

mrscruffy profile image
mrscruffy in reply toJimbo47

diagnosis, removal 1 month later, ADT with occasional radiation(3 times), a few supplements not for cancer but heart health. Daily workout with muscle building supplements. My cancer has been confined to spine and pelvis. Also, I fired my Urologist after some bad advice and went to MO in first 6 months of treatment. May want to consult Oncologist. I also eat nutritiously(no fast food) and watch my weight closely.

maley2711 profile image
maley2711

Sorry, but I'm confused. Your Dad was diagnosed...I assume by an urologist. But that same urologist gave you little or no guidance as to how you should proceed after the diagnosis??? Or, you were given guidance, but lacked financial ability to proceed?

ellie2211 profile image
ellie2211 in reply tomaley2711

Sometimes the guidance is not clear. Doctors are not always available or have acceptable bedside manner and information is not freely given. When my dad was diagnosed everything was as if it was our fault and we should already know what to do. Unfortunately we didn't and it was difficult and I wish someone would've held our hand at the start. In order to learn the drugs, biomarkers, types of doctors, types of scans, grapple with this news, etc. It always remains a scary journey but having help (especially at the start) can demystify it and alleviate some of the fears

mrscruffy profile image
mrscruffy in reply toellie2211

Sounds like you have had some bad doctors. Mine will spend an hour with me answering questions

Hereformydad2022 profile image
Hereformydad2022 in reply tomrscruffy

His doctor was dealing with cancer himself and disappeared for months at a time.

mrscruffy profile image
mrscruffy in reply toHereformydad2022

If it were me I would fire him and go to an Oncologist. Him dealing with cancer is a him problem and not a you problem

ellie2211 profile image
ellie2211 in reply tomrscruffy

We have very well respected, top of the field medical oncologists in LA. It's just the reality of healthcare unfortunately

mrscruffy profile image
mrscruffy in reply toellie2211

Guess I have been lucky. I have not had any real problems with my healthcare

ellie2211 profile image
ellie2211

We had the same experience. We were shell shocked. It took months to sink in and begin to cobble together what the next steps should be. This group has helped a lot.

If you are new, reach out to people. It helps.

Hereformydad2022 profile image
Hereformydad2022

my dad is a single man who didn’t want to burden his children so didn’t tell us many details.

When people have spouses they can mull it over and be smacked around a bit more when they don’t understand something.

He was trying to protect us by not bothering us with his care. All the doctors were disjointed and a million phone calls.

I just feel like for situations like that get your family together and convince your guy to just go to emergency room. Get mri and the whole team shows up with resources and can get you care immediately.

Hereformydad2022 profile image
Hereformydad2022

I feel like I failed him is all. And I deep dived for ways I could help when I could.

ellie2211 profile image
ellie2211 in reply toHereformydad2022

my dad is the same way. I have to read the doctors notes for information. It's overwhelming for them. It's not always possible to do things for them. I am in a similar situation in feeling feeling guilt. I constantly go over how I could've pushed him to get a diagnosis sooner. But we couldn't and can't take over for them unless we are able to completely drop our own lives and they are willing to accept it. There are others who also depend on us and doing the best we can IS our best. I think the deep dives are what we can do.

cancerfox profile image
cancerfox

I had to do everything for myself and yes, it can be a bit overwhelming at times. Your dad is lucky to have your help. 🦊

j-o-h-n profile image
j-o-h-n

Just hearing the word "Ca" leaves you speechless and causes you to stain your pants.............

Good Luck, Good Health and Good Humor.

j-o-h-n

Hereformydad2022 profile image
Hereformydad2022

lastly, I just want you all to know that my dad is the toughest, wittiest, and most loving person that I know. He is looking into the eye of the tiger now and with grace and bravery with a long happy life lived. I’m happy that we can fulfill his last wishes of him staying in his house. He was released from the hospital on hospice this week and will enjoy the rest of his journey where he is happiest, at home. Wishing you all the best. Thanks for being here for us.

Worked_the_World profile image
Worked_the_World

Like is support, not liking diagnosis.

dmt1121 profile image
dmt1121

First, take some deep breathes and know you can handle this.

Then, do your homework on the disease. I really found Dr. Patrick Walsh's "Guide to Surviving Prostate Cancer (October 2023 Edition) (available on Amazon in paperback) very useful in understanding the various tests (i.e. PSA, gleason score, doubling time, etc.), also look on reputable websites like Johns Hopkins, UCSF, Sloan Kettering, etc, MD Anderson, etc.).

Use this to identify where your father/brother/ husband is in his disease. If he has had not treatment or diagnosis yet, investigate the best urologists for prostate cancer within travel distance. They will perform a PSA test, if it hasn't been done and if it's high enough , they will do an MRI and/or biopsy of the prostate. This will result in a Gleason score between 2 and 10 (10 is most high risk). Then you will be offered options for initial treatment, including a radical prostatectomy, radiation treatment, brachytherapy, etc.

Ask what the pros and cons are for each (i.e. some have higher incidence of impotence and incontinence, some make it harder to go back from follow up treatment of prostate bed, etc.). Select a treatment or get a second opinion to make you comfortable with your decision.

After the initial treatment, he will likely be placed on androgen deprivation therapy, such a Lupron or Eligard. This may be combined with chemotherapy through an medical oncologist. If radiation is being considered as a follow up option, you will need to speak with a radiation oncologist. Any follow up treatment that might be needed will depend on his specific case and condition and whether the tumor is confined and totally removed or otherwise neutralized, or if it escaped the prostate into adjacent lymph nodes , which they find out during surgery or through monitoring the PSA post-treatment.

TAKE IT ONE STEP AT A TIME based on a solid understanding of the process for diagnosis, identifying who is truly an expert in your area for treating prostate cancer and understanding treatment options, their benefits and side effects.

You can get through this but you and he should educate yourselves before charging ahead. Prostate cancer is generally a slow progressing disease, so spending a couple of weeks figuring a path forward is definitely worth it. Be his health advocate during the process and insist on attending doctor's appointments (even if he objects) because he needs to be listening and asking questions while you write down the answers. Also have your questions written down in a notebook in advance to be sure they all get answered. Without you there, he is likely to just do whatever the doctor tell him without understanding the ramifications.

You and he can do this but remember that there is no need to panic and take it one step at a time to be sure your are getting the right treatment and are comfortable with your choices.

Keep us posted and we can try help along the way. There are some very knowledgeable people in this forum.

Good luck!

Elbers123 profile image
Elbers123

Prayers to you and your family.

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