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Be your own advocate? YES

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Posted 6/3/2022 3:46 PM (GMT 0)
After reading JNFs post to me about being my own advocate and getting a MO onboard, I was relentless. Starting with my insurance, I was told I had to have a referral from my primary care doc. The one that wanted to increase my Testosterone. I spent several days trying to get him to call me back. He never did. I called the insurance again and was told my URO could do it. I spent several days asking him to call me back. It took a week of phone calls to get him on the phone. He said that I needed to wait to see a pattern of PSA and Testosterone checks to see how the ADT was working. I told him of others on this forum that had much lower testosterone after a few weeks on ADT and I was into my 7th month. He said, maybe we should switch to Firmagon injections. I asked him, do you remember I had a very bad reaction to Firmagon and the reason for the switch to Orgovyx? He said let me look at your history and I will call you back. Three days later his MA called me and said he moved up my blood work to this coming Monday and after that regardless of the outcome he would refer me to a MO. This post should be on the rant thread, but I wanted a new thread that I could keep updating if anyone wanted to give me guidance.
So, it looks like Prato and I have something to look forward to on Monday and thanks to JNF for getting me to move on the MO My testosterone history: 12/9/21-25.88 01/25/22-20.62 03/16/22-23.98

On a side note: I loved the link on Dumb and Dumber To. The catheter removal scene was a great laugh. All of this talk about who removes the catheter. After my TURP, my Uro told me I could take it out myself and gave me instructions. After much thought and a sweaty brow, I walked into the shower. My wife was there to give me encouragement, but looked away. I disconnected the tubing and deflated the balloon. I gave a little prayer and gave a slight tug, it didn’t budge. By now the sweat was dripping off my head. I then gave it yank and yelled “Holy s###,” as everything gushed to the floor. My wife screamed, but didn’t look. Funny thing is it didn’t hurt and saved me a trip to my worthless URO’s office. If had to do it again, I would do it myself without my wife present. My best to all,
Jack
Posted 6/3/2022 4:24 PM (GMT 0)
IMHO THE most important thing to learn on this forum is to be your own advocate.
Ten years ago I had a period of steadily rising PSA to 4.1. My regular GP actually took me into his office and gave me a bs talk about not worrying about it, it is no big deal. Three month later I self-referred for another PSA, and it was 6.7. I immediately self-referred to a urologist I had seen before, where I was diagnosed.
I wrote a scathing and brutal handwritten letter to my regular GP regarding his lack of concern regarding rising PSAs and his competence and sent it to him. Never heard from him or saw him again. Got new GP.
When I told my urologist what I had done, he laughed and couldn't believe I actually sent the letter. darn straight I sent it.
Posted 6/3/2022 5:41 PM (GMT 0)
A good Twitter article by a urologist on shared decision making (SDM) practice in medicine. Speaks to what you are talking about.

https://twitter.com/giuliailane/status/1532166312268472320?s=21&t=p4HVRGp3E28zfhZ1T3svkQ
Posted 6/3/2022 9:27 PM (GMT 0)
Being your own advocate is important in every aspect of life (except criminal defense law lol).

This is especially true in medicine where the stakes are the highest.

I really don’t do well with paternal physicians. I need too much information for their taste.
Posted 6/3/2022 10:07 PM (GMT 0)

island time said...

I really don’t do well with paternal physicians. I need too much information for their taste.

I didn't really like my first MO because he didn't like me asking questions. It really seemed to irritate him when I would ask just a few basic questions. He looked at me and told me not to worry, and to let him do the worrying. Hmm, okay dad. Fortunately, he soon moved his practice to another city.

My second MO was completely different. His treatment plan was essentially the same as the first guy, but he always had time to discuss my questions. Sometimes we would just shoot the breeze for a while. I loved that guy but he retired. MO no.3 has been good too. I think he appreciates that I try to keep up with the newer treatments and technologies.

If your doctor has little interest in your thoughts concerning treatment, might be time for a new doctor.
Posted 6/4/2022 2:15 AM (GMT 0)
Hello, Jack64 ~

You have become the QUARTERBACK of your medical team. Hurray! Hurrah!

That being said ~ LUPRON & then FIRMAGON didn't consistently suppress my testosterone, so there were spikes & flares in my PSA.

Third time was the charm - ZOLADEX injections. Each case is different, but ZOLADEX flatlined my testosterone, which has helped me keep my PSA in check.

ZOLADEX is easier for me ~ it's a small pellet, injected in my gut, each month. No pain ~ thanks to a tiny shot of LIDOCAINE first. No pain or swelling or injection site reactions later ~ like I experienced with LUPRON & FIRMAGON. It's a possibility to discuss with your doctor!

You might also ask about the possibility of ZYTIGA or XTANDI.

I'm glad you will be consulting with a medical oncologist. For me, that was a GAME CHANGER.

As I have stated ~ it was surprisingly easy to try different forms of ADT. For my case there was a REASON, and my doctor felt we could ultimately find one that helped control my PSA to a greater degree.

Slowly, but surely ~ ZOLADEX ended up working the best. I benched my original urologist who flatly refused to use anything but LUPRON.

It was my oncologist who held all the "keys to the kingdom."

Nothing ventured, nothing gained.

I think you can be better served, by meeting with that new oncologist you mentioned.

Sending you my very best ~ keep us posted!

CYCLONE ~ # Iowa State University
Posted 6/4/2022 12:11 PM (GMT 0)
Yes, being your own advocate is imperative, especially with the changes occurring in the healthcare system. At the clinic/hospital we use, I think they are gradually shifting to a DIY model. For example, when I had my prostate biopsy a few years ago and an ultrasound for a hernia a few weeks ago, in both cases I heard NOTHING from the doctors and had to pull the results up in the portal and use Dr. Google to explain what I was reading. In the latter case, the hernia issue, I contacted the doctor through their email system and asked what the results indicated and all he said was to contact general surgery for an appointment and he gave me the main appointment desk number.

In a much more DIY example, my wife just had Mohs surgery on her face for skin cancer. They sent here home with a “suture removal kit.” Yep, it’s DIY on suture removal these days.

My guess is that in the near future they’ll be giving a kit to handle our own procedures and a link to a YouTube video.
Posted 6/5/2022 2:16 AM (GMT 0)

VinceInMT said...
Yes, being your own advocate is imperative, especially with the changes occurring in the healthcare system. At the clinic/hospital we use, I think they are gradually shifting to a DIY model.

Its sad, and scary, but i believe you are correct. Everything now seems to be done through the portal. My wife had a breast MRI recently, and we had to see the results on the portal. They are released immediately as available and in fact, the website says that, and states "please give your Dr 3 days to look at the result before calling"
Can you imagine seeing a scary result on an MRI and having to wait 3 days? Well, i know some can, they just have the abilitiy to remain calm, but some (moi) cant.
My primary care Dr used to call me back at 8 o'clock on a Friday night . Now i get a call from his PA.
Its a brave new world. I don't like it.

RamonV said...
IMHO THE most important thing to learn on this forum is to be your own advocate.
Ten years ago I had a period of steadily rising PSA to 4.1. My regular GP actually took me into his office and gave me a bs talk about not worrying about it, it is no big deal. Three month later I self-referred for another PSA, and it was 6.7. I immediately self-referred to a urologist I had seen before, where I was diagnosed.

The worst thing about this, is that in so many cases, when a man hears that from his GP, or any Dr, its what he wants to hear, so even if on some level he knows its wrong, he will accept it.

Jack64 said...
Three days later his MA called me and said he moved up my blood work to this coming Monday and after that regardless of the outcome he would refer me to a MO. This post should be on the rant thread, but I wanted a new thread that I could keep updating if anyone wanted to give me guidance.
So, it looks like Prato and I have something to look forward to on Monday and thanks to JNF for getting me to move on the MO My testosterone history: 12/9/21-25.88 01/25/22-20.62 03/16/22-23.98

Jack, good thread.
Good luck on Monday.
Yeah, something to "look forward to". Almost 7 years after diagnosis, and in fact 10 years since my rising PSA started me on the road to regularly scheduled blood tests. And still, i am a crazy person for 3 days before the test.
Posted 6/5/2022 3:14 PM (GMT 0)
If you're dealing with the VA it is absolutely necessary to be your own Advocate. If your own reasoning fails then get support help from your Congressman and local community leaders to send in support letters.
Posted 6/5/2022 5:45 PM (GMT 0)
Agreed to being your own best advocate for health. Only after I was diagnosed with aggressive PCa did I learn that my capable primary care doctor overlooked a two-year-long spike in my PSA. He only flagged it after it went above 4. Had he or I had a sharper eye perhaps we would’ve caiught the cancer earlier. Now I read all of my medical records myself very closely….
Posted 6/5/2022 6:29 PM (GMT 0)
I was lucky with my catheter as it slipped out via gravity with nary a tug.
Thank goodness as I was fearful about having to yank it. I didn't want my innards coming out Lol
Easy peasy.

Glen
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