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
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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.
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.
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.
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?
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
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.
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.
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.
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.
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.
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