Newly diagnosed. Conflicting treatment options.
I was newly diagnosed with Stage IV prostate cancer January 27 at age 65. Was never told by my doctor before that I should have my PSA checked. At diagnoses it was over 500. That's as high as the lab test went. I have had an MRI, prostate biopsy, bone scan, CT, bone biopsy and I can't get in to get a PSMA until May in Mayo. My local oncologist said I need that test to see where it has spread before I start any treatment. I told my doctor I would like to be seen in Mayo and he agreed I should go to Mayo to be able to get in on any clinical trial they have. Now my doctor is telling me that he talked to the Mayo oncologist and they both agreed I should start treatment locally until I can be seen in Mayo. My question is does Mayo suggest treatments without seeing the patient first?
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
@sandg, I'm repeating some of the message that I wrote to you in the discussion in Visiting Mayo Clinc here: https://connect.mayoclinic.org/comment/842874/ because I think other men with stage 4 prostate cancer might have some good insights to offer like @kujhawk1978 @stebro @donaldhill9258 @waynen @kayak461 @hammer101 @norske46 @dandl48 @jimcinak @jb2buckwater and others.
I suggest asking your local oncologist for clarification. Here are some of the questions I would want to understand better:
– What treatment are you recommending?
– Is this standard care for stage 4 prostate cancer?
– Could the results of a consult with Mayo experts and the PET scan alter the course of treatments?
– Is my prognosis improved by starting treatment immediately?
What other questions would you ask? Are you able to contact your local oncologist?
Hi Colleen. The trouble is my doctor does not communicate things with me. The plan was for me to go to Mayo beginning of May and see an oncologist there to get the best care. Then I am informed by my nurse that my doctor and the doctor from Mayo had talked and I was supposed to start chemo now. Would a doctor from Mayo tell my local doctor to start treatment before even seeing me at Mayo? I have never been there before.
Your local oncologist has a lot of information given the tests you have listed. You have asked him to refer you to Mayo. Mayo has certainly reviewed your case given the information from your local oncologist. They don't have to do a deep dive or see you immediately if you are stage 4 to get you started.
It would not be unusual for your doctor and the Mayo physician to confer on the best course for you given your advanced stage. Time is of the essence in getting you started on treatment. There are things that can be done independent of the information you get from a PSMA Pet scan.
After discussing your case, and given the resource constraints of both treatment centers, they might likely agree on a reasonable course of immediate action. It would be highly unusual for an Oncologist from Mayo to tell your doctor what to do.
Starting a course of chemo would not be an unusual place to start and I know it is sometimes recommended by at least one Oncologist at mayo. It's aggressive, but you are stage 4. After consultation, the doctors could certainly agree to a course of action that would precede your appointments at Mayo. And, it would be reasonable to do so.
Mayo is one of the top centers for PSMA Pet Scanning and demand for time on the machines is very high. But, you don't need to go to Mayo for chemo or ADT or other broad spectrum treatments for metastasized cancer. The scan will help guide the type and order of treatment that your physicians recommend. Hormone therapy (ADT) is part of the standard of care. Chemo is becoming more prevalent.
You've had a nasty surprise and people don't often get an initial diagnosis of stage 4. At age 65 you have a choice between aggressive treatment and palliative care. If Mayo has agreed to take you as a patient and you have elected to follow aggressive treatment, what you have experienced is reasonable. It would be nice if you had better communication with your local physicians and you need the answers to Colleen's recommended questions. Prostate cancer treatments are numerous and complicated. Be pro-active and educate yourself as fast as you can.
Mayo: After reviewing your test results including the PSMA Pet scan your team at Mayo may recommend further testing, re-examine past testing and help you decide on a course of treatment. They will recommend a treatment plan. This may be done on a remote video consultation.
You can give yourself a head start by learning about the different treatments. The prostate cancer videos done by the Prostate Cancer Research Institute on Youtube were helpful to me to begin to get a handle on all the choices available. You need to educate yourself as quickly as you can because things will happen fast once you start at Mayo.
Since you were diagnosed in January, I'm sure you've begun. And you may not need these suggestions. They may be helpful for others who have similar questions.
Use the Mayo website in your research. There is a lot there. If you have been accepted as a patient at Mayo, learn to use the Mayo Patient Portal.
You will not be disappointed in the care you get at Mayo and I've found communication to be quite good usually. You have a tough row to hoe, but you will get state of the art care at Mayo. I hope this has been helpful.
Good luck on your journey and may God bless you …
Sandg: you might want to go to https://www.nccn.org/. It is a website written by doctors for doctors AND patients. It covers treatments for all levels of cancers and should give you a basis of what treatment you may choose to discuss with your doctor to do right away to try and immediately impact your cancer.
The pcri youtube video suggestion was also good. Really helpful doctor and cancer discussions.
You should be able to get an order for the psma pet scan from any number of doctors based on the tests and results you have already taken. Those test results can be sent to any doctor you choose to have them review and analyze. Any expert radiation oncologist that has the skill set to read it accurately should be able help you start a local treatment. The more expertise you can tap into immediately to start treatment, the better off you are.
If you are looking for a good, comprehensive book on prostate cancer that explains a lot in easy-to-understand terms, I’d recommend Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer. I found it very informative and helpful.
Sandg: Our Stage IV Prostate Cancer paths have some similarities. I was age 66 when I was diagnosed. I will never forget these words from my oncologist, "You can never be cured, you can only be treated." I was in shock, totally shocked. Stage IV Prostate Cancer was not in my plans, after 2.5 years now it is. That first year was emotionally and physically brutal, amazed I survived it. Thankfully I did. My first oncologist, local one, called the shots: Radiation, Chemo, ADT, in rapid succession. What an amazing job she did. Forever grateful to her and her team. It took about a year for me to stabilize and adjust to my new "Living with Cancer" life. We moved to be closer to our kids and granddaughter while dramatically downsizing our life style.
After the move I learned that not all cancer treatment organizations are on the same track. Let's just say I moved from a hopeful treatment plan to a hopeless one. I consulted with a reach oncologist, she was epically helpful, great investment on my part. She informed me Mayo is the best for me. But we don't live near one. She suggested a research university closer to home, OHSU (Oregon Health Science University). I transferred my treatment there which put me back on the hopeful track.
Next, based on my oncologist consultation, I assembled my own palliative wellness team. Here's my team: (1) MSW, for help managing the emotional highs and lows of this joinery. (2) Acupuncturist, to help manage bone and joint pains, (3) Wellness Coach who keeps me on a specially designed nutrition and exercise track, (4) Primary Care Doctor, (5) Palliative Care doctor, (6) OHSU oncologist, and supportive resources which are amazing.
Sandg my friend, there is hope. This journey we are on is amazing. Frustrations will occur, but so will incredible enlightenments and insights. The wisdom of our friends on Mayo Connect are both meaningful and purposeful.
@sandg Are you waiting until May to get a PET scan at Mayo? Here's a pro tip. Mayo does not have a waiting list for cancelations, but if you call each day, they will tell you if there has been a cancellation. If you'd like to get in sooner, I encourage you to call each morning first thing or at the end of the day and ask if there have been any cancellations. I did this and got in sooner. After having a PET scan done there, they recommended a second one using a different marker and we scheduled it for the next available time before I left the appointment. The scheduling clerk explained the process. I had some other business at Mayo before I left that same day. When I was finally leaving about 5:30 pm, I called from my car in their parking ramp, and asked if there were any cancellations. There was and I got in much sooner.
@sandg If you are going to Mayo for a PET scan, I encourage you to get a second opinion from their urology team while you're there. I live within walking distance of a large university medical research center. I researched who was the best in the U.S. for prostate cancer and it came down to MD Anderson, John Hopkins, and Mayo Rochester. Mayo Rochester was closest and went there, even though it is Minnesota Viking country. I've been there seven times, have Stage III prostate cancer, have been there seven times, plus Zoom conferences, and am delighted with their diagnostic expertise, making sure they fully understand my case before rushing into treatment, and the treatment plan. Plus they're genuinely good people all around. For me it felt like the difference between high school football and the pros.