Talking Frankly about Living with Advanced Cancer

I received a radical robotic Prostatectomy via the da Vinci method 15 years ago this month. On November 12, 2021 my PSA was tested at 7.6. On January 31st I received the results of a PET Scan executed on January24th and the results of a PSA test drawn on January 13th. The PSA came back as 2.83 and the 'remnants' from the Prostatectomy were shown to have metastasized. Can someone please explain to me how this is possible without any medical intervention? Thank you.

By the way I am 84, will be married 67 years in October (21) and my husband has his own set of probllems. He will be 90 In Oct 27. He has a full time catheter which is changed monthly. He has asbestosis and is on oxygen 3/4 of the time. With our age to fight along with our problems we still go out to play bingo at the nearest casino. We talk to others there too. Bob also has a walker. So the "fog" is there too for him. Life is meant to "live". Don't lose yourself in your problems, voice yourself here, you would be surprised on what you can say,and
and hear/read so try to voice your fears here. Don't allow them to kill you sooner than what is meant to be!. Shortshot80} Nancy

Hi Dutchman, Sometimes, high PSA levels in the blood are not due to cancer cells, but other causes. You may wish to ask the PSA specific part of your question to fellow prostate patients in one of these discussions:
- Detectable PSA 9 years post prostatectomy https://connect.mayoclinic.org/discussion/detectable-psa-9-years-post-prostatectomy/
- Post prostatectomy: What do rising PSA levels mean? https://connect.mayoclinic.org/discussion/post-prostatectomy/

It must've been a blow to hear that cancer is rearing its ugly head again after 15 years. How are you doing upon hearing that news?

I have leg pain only one leg sometimes pain travels s up and down my leg i am taking Lupron 6 month shot and will be starting abirtoone-ZytigaDoes anyone have this similar leg pain I was told i have advanced metastatis cancer How could i know if this pain is caused by my cancer

Thank you for the two links. It was kind of you to answer my post. I was mainly trying to find out how the PSA reading can go from 7.6 to 2.83 in two months without any treatment. The private practice Urologist I found on the Internet tried to tell me the reason was because the Cancer has Metastasized which I find difficult to understand since I always thought the more Cancer the higher the PSA reading. Naturally it was horrific news to find out the Cancer was back but it has bounced up and down quite a bit over the 15 year period since the Prostectomy. At present I can't even talk about it and just want to hide somewhere and make the world go away!

I get that, Dutchman. Wishing reality to go away sounds like a pretty normal reaction to me. It takes time to accept that the cancer has come back. I know you just said that you felt like hiding and make the world go away.

But I ask, what part of the world do you want to welcome back into your life? You’re here now. What brings you joy? For me today it’s very simple. I want to stay cosy and warm while the wind howls outside. I’ve got a warm cup of tea and a new book that is soon to get my full attention. It’s called Agent Sonia, a true spy novel.

What’s your simple pleasure today?

Very interesting question, Colleen. I guess my simple pleasure today, and any other day right now, would be the ability to sit by this computer without the dread of Tuesday's second appointment with the Urologist constantly occupying the back of my mind. On November 12th I went for a PSA test (results were 7.6) and subsequently asked my Primary Care to refer me to a Urologist since my last encounter was a Lupron Injection on April 2nd and I cancelled the followup appointment due to the Pandemic. I secured a Urology appointment with a Dr. Jenkins on December 17th (with a different facility) but when the doctor found out I had a Prostectomy 15 years prior I was referred to Dr. Dunshee. This doctor told me the imaging company would call me for a PET Scan appointment. I waited 2 weeks before calling about the appointment myself and found out Dr. Jenkins had failed to order the PET Scan appointment. I was so disgusted I found another Urologist, Dr. Choi. He suggested I get a PET Scan performed and on January 31st he told me my PSA was 2.83 (lower because it had Metastasized) and that I should go back to see Dr. Dunshee. Hense, Tuesday's appointment. In my eyes, THREE MONTHS have been wasted because of this Three Stooges type organization my Primary Care found! And in my layman's mind, the Cancer keeps growing! The past three months, Colleen, seem fairly ridiculous, but I really couldn't make this up! Hope I didn't use up all your patience in deciphering this episode.

@dutchman09 Frustrating as all get-out, isn't it? We expect that when our medical professionals tell us they will do something, it will get done. I know for myself, and I'll bet many others here, we have had to do the follow-up ourselves. Only to find out something fell through the cracks, which causes yet more anxiety and wait time. Since we are closest to our health issue, it feels magnified, right?

I will be interested to hear what the urologist says tomorrow, as no doubt you will be, too. Meanwhile, what are you doing today to help you relax a bit, take the edge of the "what ifs" you are feeling? Would taking a walk outside help?
Ginger

Let's see; to relax today (relax, ha!) I've spent most of the day researching the Internet and I've come to the conclusion that Google is SEVERELY overrated! I ask one question "Is a Gleason score reading possible after a radical prostectomy"? All I get is advertisements for lowering male PSA. (Google, Big Oil, Big Pharma, Facebook and the rest are all in it for the BIG BUCKS!) This country has the most expensive healthcare in the world and what do we get for it? (I heard that!) I could probably spend weeks on this stuff and still not be ready for tomorrow. Probably by Wednesday I MIGHT be ready to talk with a few people about my prognosis.

My recommendation? Step away from Dr. Google, @dutchman09 🙂

I might suggest (only if you want a suggestion) focusing your time writing down your questions and organizing them for your appointment tomorrow to get the most out of your time with your oncologist. Once you've written them down, put the paper aside and try to calm the never-ending loop of "what ifs" and questions that are whirling in your head. Easier said than done, I know. But writing them down can help.

Just know that we're ready to listen when (if) you're ready to talk about your prognosis and what you learn. Wishing a good night's sleep tonight.