Talking Frankly about Living with Advanced Cancer

I am very glad yesterday is over! I didn't really expect much to come from this doctor meeting but after all was said and done it worked out for the best. He read my print out on the effects of Chemo on Peripheral Nephropathy and my thoughts on radiation and then finally suggested (after a simulated 'strip search' while dictating to his Scribe) Hormonal Therapy in the form of an injection of Eligard, leuprolide acetate, every three months with a prescription of Bicalutamide to help with the hot flashes. He also did lab work to measure my Testosterone which to the best of my knowledge had never been performed on me. So in three months I will walk in his office with fingers crossed to see what has developed. I did ask him why in November my PSA was 7.6 and in January was 2.83 and his only response was "One of them was a lie"! Knowing the circumstances I can guess which one.

I only had a few months free and when I was to begin radiation they found lesions in the liver..so no radiation. I tried a clinical trial for my rare genotype but that too failed after a couple of months. Now on Onivyde chemo combo and will find out next week if things are stable. I know what you say about anxiety for the future and like you try to find as much joy in the present. As my Oncologist told last week, "LIVE Brenda, live, don't put off enjoyment, however you define that. We all put off things, enjoy life now." Let's keep each other in a positive attitude. I would like to continue to hear about your status,

Hello everyone i have been living with a pancreatic cancer reoccurrence after chemo and surgery and more chemo with clean margins but had no radiation for a year and a half. (i mention radiation because my daughter a geriatric and internal medicine doctor at UCLA, told me radiation is now the standard of care after surgery ,as well as chemo ) i have had this reoccurrence with mets to the lungsfor about a year and a half. The mets in lungs which when big enough can be ablated and disappeared but now too many small ones are there. i have been lucky that everything is slow growing and try to focus on that. it is however anxiety producing knowing the other shoe will drop any second but not this one. i realize i still feel good enough to do a lot but feel dragged down also so it's a battle. i am lucky to live with my grandchildren whom i still care for 12,9, and 5 year olds. They give me lots of love and support as does my son and daughter. I used to be a teacher and enjoy being around children. Even with cancer there are things to feel lucky about and I try to focus on those things. I'm 72 so not young and am thankful for getting it now instead of earlier. Still the other shoe will drop hence anxiety in back of my mind always.

Hi @dutchman09 - Have you tried Dr. Google's smarter little brother - Google Scholar (https://scholar.google.com/). Not only is "she" smarter but she also has the ability to sort all the search results so that you can see the latest and greatest. Here's the search results for your previous search with all the Dr. Google ads. I use it all the time looking for medical research information.
https://scholar.google.com/scholar?hl=en&as_sdt=0%2C24&q=Is+a+Gleason+score+reading+possible+after+a+radical+prostectomy&btnG=

Your absolutely right about dumping Dr. Google! I do have a small list of questions but after the hassle of the last three months I really don't have any faith that this appointment is going to go anywhere. I do want to thank you for the good night sleep wishes. I think I've got one of the best reason's in the world to just want to stay in bed tomorrow. I live in rural Arizona and it's an hour plus drive to the office that I've never been to.

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.

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.

@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

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.

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?