Tips: Preparing For Your Doctor Visits |

November 4 | Free In-Person Conference Prostate Cancer Patient & Caregivers Conference Hosted By CancerABCs | 8am - 4:45pm EDT
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Jan's Story | Her Husband's PSA Was 7,000 | • Advanced Prostate Canc...
PCRI's CEO, Alex Scholz, interviews Cancer ABC's Executive Vice President, Jan Manarite, about the ins and outs of planning your doctor's visits, how to ask the right questions, who should you talk to, and much more.
Visit Cancer ABC's website cancerabcs.org.
Cancer ABC's is a non-profit organization in New York City whose mission is to provide education and other resources that bring tangible improvements in the lives of cancer patients. Although the organization provides support to people afflicted by all types of cancer, it has always had a special focus on prostate cancer.
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The Prostate Cancer Research Institute (PCRI) is a 501(c)(3) not-for-profit organization that is dedicated to helping you research your treatment options. We understand that you have many questions, and we can help you find the answers that are specific to your case. All of our resources are designed by a multidisciplinary team of advocates and expert physicians, for patients. We believe that by educating yourself about the disease, you will have more productive interactions with your medical professionals and receive better individualized care. Feel free to explore our website at pcri.org or contact our free helpline with any questions that you have at pcri.org/helpline. Our Federal Tax ID # is 95-4617875 and qualifies for maximum charitable gift deductions by individual donors.
The information on the Prostate Cancer Research Institute's KZbin channel is provided with the understanding that the Institute is not engaged in rendering medical advice or recommendation. The information provided in these videos should not replace consultations with qualified health care professionals to meet your individual medical needs.
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[@colemant6845]

I am going through this at 65 years old. Re-current after 8 years and PSMA uptake in 2 Lymph nodes. My wife has early Alzheimers, so no Caretaker capability. I take it as a challenge ... but does wear me down. I have no further radiation options... Cryo Treatment on my prostate is my Urologist next action... My Lymph treatment is still unknown. Wish I had help. Most of us are on our own. You Women are a Godsend.

[@keithgolinski9535]

No mate, you might feel like ur on your own but there are a lot of great people out there who are of great help. I’m not sure what support groups you have there but that was the best help for me, I’m sure you would have similar things. It’s always good to talk. You can always drop a line so don’t hesitate. I’ll help if I can.

[@danielstevenson-francis974]

I’m 61, I’ve had a slowly rising PSA , negative DRE. Early this year I went for an MRI because my PSA had risen more sharply, which showed a tumor. I went and had a biopsy which resulted in a 4+3 Gleason. Had a radical prostatectomy in August . In October I had a follow up PSA at 1.43. Next week I go for a PMSA scan. My feelings are that if I could have had a PMSA scan up front , instead of all the previous tests. After everyone telling me everything looks good , we caught it early, your young I’m looking at radiation and ADT. I’m crushed, I was already depressed enough with the incontinence and impotence . I’ve researched ADT , much of it done on your channel and the side effects are ridiculous. I feel I’ve been fed a line throughout this ordeal.

[@tomjgrant]

are you going to take ADT?

[@danielstevenson-francis974]

@@tomjgrant depending on how long, I don’t understand why they don’t do chemo and actually try to kill the cancer. My understanding is there are a couple chemo drugs out there. ADT may help you live longer, but are you really living? I won’t know anything until they do the scan on the 31st. I have an appointment with the radiologist and ADT people a week after

[@keithgolinski9535]

Hi Daniel I’m in Aus and just read your comments. Your story is very similar to my own except that I am 78 and I have 5 metastases in the pelvis. I was diagnosed around 15 months ago and I do remember the feelings of shock, anxiety, fear and many more. I’ve been on Eligard for 12 months and have good numbers and I’m not too worried. The chances are you will be clear and the treatments are more precautionary and likely temporary. I get some hot flushes (flashes in your part of the world) but doesn’t interfere with life too much. I’m having acupuncture and I think that will help. Not everyone is the same so you can’t judge by what some others experience. When I look back, I can see that a lot of my worry was unnecessary but understandable as it hits hard. The word cancer is frightening but I have learned that not all cancers are created equal and we are lucky that we now have quite an arsenal of weaponry at our disposal and that grows every year. If I can say one thing it would be just take it one step at a time and try not to worry about wot ifs because they likely will never be. The best thing my doc said to me was you’ve just got to think of it as another chronic disease that we treat and manage. All the best. Keith

[@danielstevenson-francis974]

@keithgolinski9535 Thanks for your story, I hope for all the best for you. I won't know anything for a couple of weeks, so I'm just taking it day by day

[@robwells230]

Demand FULL DISCLOSURE about ADT before they coerce you into ADT. Demand the hoped for or imagined benefit to overall survival and carefully weigh that against the horrific quality of life destroying and life threatening side effects, including the real risk of permanent CASTRATION. Up to twenty percent of older men will NEVER RECOVER their testosterone levels above castrate level and suffer the rest of their miserable lives as ZOMBIE EUNUCHS. Only then, can you give your FREE AND FULLY INFORMED CONSENT to this cruel and barbaric treatment. ADT may be your only or best option, but just know ALL THE FACTS. Read carefully the information sheets that come with this toxic medication and it states in the fine print.. TESTOSTERONE RECOVERY IS UNDETERMINED.. GOOD LUCK

[@georgefitzhugh6455]

Thanks for sharing your story

[@nasirmughul1]

Thanks for sharing your experience

[@nasirmughul1]

PCR Thanks for great information

[@sgtbosshog2182]

Great info keep the great work up

[@JustaReadingguy]

Great discussion!

[@gvet47]

The day I was told I had prostate cancer I was told it was beyond being treated as it was in most lymph nodesbot then said hormone theropy my extend my life so he had me get one shot that day. No time to really know about it. At 10 months now I really know very little. Just a lot of pain that a palliative nurse helps me with pain meds. Why do I never have review with a doctor and more scans to see what is going on.

[@cindyulrich4788]

Hello I am trying to get an answer on using Lupron vs a medication to stop the synthesis of Testosterone vs dropping it. After PSA returned at 0.5 2 years after RP and negative PSMA pet scan

[@robwells230]

You will never get the truth from your doctor who only parrots the BIG PHARMA SALES PROPAGANDA. Read the info sheet that comes with the shot., that doctor's never give you and don't want you to see. It clearly states... TESTOSTERONE RECOVERY IS UNDETERMINED Consider ADT exactly the same as surgically CASTRATION as ADT can be permanent in up to twenty percent of older men. The side effects can be horrific. Do not believe the bullshit that ADT is generally well tolerated.. The side effects are quality of life destroying and life threatening. Many men like myself found the effects to be insufferable and refused further ADT. Insist on full disclosure of both the small benefit to overall survival vs. the horrific side effects. One six month shot of Eligard that I was Coerced, deceived, and extorted into getting has continued to suppress my T well below castrate level almost a year after that shit expired with little hope of ever recovering, and has aged me over ten years with horrific side effects. ...Now I know why Allan Turing committed suicide.

[@keithgolinski9535]

Hi It’s Keith in Aus. Lupron and Eligard are pretty much the same. I have been on Eligard for about 12 months and life’s still good. Not everyone is affected the same way. I’m a bit old for some of the other options which I believe can knock you around a bit but if you go on ADT it will at least shut it down until you explore other options. You can go off it if you decide to go another way. If you opt for another treatment, they will often put you on ADT for a time anyway as it tends to “shrink” the cancer by up to 30% or so. As I was told, without testosterone, the cells that are still mutating are not able to survive. I’m not qualified so don’t take my info as gospel so please check further but that’s as I understand it.

[@keithgolinski9535]

Just one thing, my Doc explained to me that it was far better to go on ADT and keep other meds up your sleeve for down the track should the ADT stop working. Some things, at least here, you can only get if you have tried ADT first. Hope that helps.