I am considering getting a second opinion about my treatment plan. I have delayed doing so for silly but understandable reasons: confusion, anxiety and cost to seek another opinion. My profile is available on this site. I am most interested in hearing from those who have done so.
Getting a second or third opinion. W... - Advanced Prostate...
Getting a second or third opinion. Was it helpful? Did It Change Treatment Course?
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ronton2
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58 Replies
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Find a hospital or clinic that is highly rated for prostate cancer, perhaps one that has a number of clinical trials available and request an appointment. Your current doctor should be fine with you trying your best to suppress this disease. Second and third opinions are good.
I agree about peace of mind, noirhole. Thanks for taking the time to respond. I suffer from intermittent anxiety!
My primary oncologists are at MD Anderson in Houston. I had all my records/films sent to Moffitt in Tampa. The MO I met with had far less knowledge about my PCa than I do. Waste of time but that will be highly dependent on the MO you meet with. I think best 2nd opinions are found here in this forum,
I received a second and third opinion from 2 hospitals that excel in prostate cancer. Northwestern and University of Chicago both concluded the treatments I was receiving was the most effective for my diagnosis. If anything it gave me peace of mind.
Who did you get to see? Higano, Yu? Doesn't your insurance pay for second opinions?
I did so two years ago. As has been suggested by many on this site I expanded my care team to a research urological oncologist (RO) for my second opinion. Fortunately my only cost was my co-pay and the cost of a plane ticket.
The results have been actionable, several times. The first time was when my research oncologist told me to delay the start of abiraterone, something my urologist was pushing me to do. I followed my RO's advice.
The second time my RO suggested that I could TRY radiation therapy to three new mets that appeared on scans, but it was noted that there's never been a proven benefit to doing this. (I did it anyway.)
The third time I should have listened to my RO, who said it was a waste of time and money to do Provenge immunotherapy. The RO went on vacation before I could ask for the rationale. I learned through this forum that the NCCN guidelines were updated mid-2019 to exclude mets to lymph nodes from the recommended uses of Provenge. (Two of my three detectable mets are to lymph nodes.) Had I or my urologist been aware of this I would have saved a lot of time and money ($50K charged to the insurance company).
And finally, my RO told me last fall that I am now ready for abiraterone, and suggested that I consider enrolling in a clinical trial that includes abi and a study drug, apalutamide.
I started on this Phase II trial today. My urologist could not have helped me with this clinical trial.
If this isn't enough to suggest you seek a second opinion, please message me!
Blessings on your journey.
My husband has had surgery, radiation, lupron therapy, and now abiraterone. Each therapy delayed progression by years. And he has endured all treatments with manageable side effects except the last one. He was on it 8 months and is taking a break from it. It was effective at lowering psa but devastating to his muscular structure and brain. We want to look into other therapy but his doctor is resistant. Please share how you found your research urological oncologist and the location if possible? Much appreciated and thanks to all who share here.
My story is similar except I also had taxotere chemo. I am 2 days on abiraterone with no side effects that are obvious. I appreciate you mentioning your husband’s side effects and will be watching for them.
I found my Oncologist by reading clinicaltrials.gov. I knew that abiraterone was next for me and searched for a trial that incorporated it and something else that might help me and other men. I found 3 or 4 and contacted all 4 organizations. I am willing to travel. And my insurance works in all 50 states. MD Anderson Cancer Center in Houston invited me to visit two years ago. After a battery of tests (paid for by my insurance) I was told I wasn’t ready for the trial. Fast forward to this fall and my cancer progressed with new mets. I am now in that trial. BTW another factor in my decision was that I have a close family member that I can stay with each time I go to Houston, which is now once a month “for the duration.”
I got a couple second opinions shortly after my initial dx. I did wind up changing doctors, and my new guy suggested zytiga over chemo, so I switched. Of course I’ll never know if it helped my overall outcome, but I felt more comfortable with the new MO who specializes in PCA. I never looked back, never plan to. If you can, check out that second opinion. Best of luck!
ronton2• in reply to
I hope you are doing well now, keeping the disease at bay. I do so appreciate the time you took to respond.
GET ON WITH IT, DO NOT delay further. The boys here have given you excellent advice so you need to move quickly, as some treatment options may otherwise close. Putting your head in the sand is NOT what one should do in this war. good luck
I started my journey through this horrific storm almost 4 years ago, went to NY, had my biopsy done, 2 bad cores, worse was on the bottom of my prostate which they wanted to remove, I knew from hundreds of hours of my own research that because the bad core was at the bottom of my prostate the cancer would have already have spread below the prostate so I didn’t have it removed. A fellow musician was facing the same dilemma , he chose removal. Drs said he should be fine .it had not metastasized. Talked to him last week and his cancer had metastasized to his lymph nodes stage 4, so do your homework. I have stage 4 metastasis to bones, I’m on Zytiga Lupron. Xygeva, prednisone, Vicodin. Psa 0 or below , have poor energy, and bouts with depression. But that seems to go with the treatment. Good luck everyone this no fun! But still interested in LU 177.
I do appreciate you taking the time to respond. I wish you the best going forward. I heed all the advice. Keep at it!
ALWAYS get other opinions concerning your treatment options.
My first MO told me to get my affairs in order. He said that with a PSA over 1300 and rapidly rising that I had less than 6 months and that at 75 I was too old for any trials or special treatments.
I got a second opinion. I'm now over a year past my use by date and going strong.
2Dee
Equip yourself witha primer on Prostate Cancer, Treatments, Survival Rates, etc. NCCN.org...look for patient guides > Prostate Cancer. Knowledge is power.
I have some references. Do you have a resource you use often?
The two resources I rely on the most are the NCCN guidelines and the Prostate Cancer Foundation handbook (free to download or they will mail it to you for free). If you are seeing a research urologic oncologist he or she is likely helping to write these guidelines.
Best wishes!
I completely understand getting second opinion. SCCA has several excellent MO;s. Is it appropriate to get a 2nd opinion there or does it need to be outside SCCA. I also need to check to see if my primary MO ever has meetings with a 'panel' of others at SCCA for advanced cases or am I dreaming?
Parscore• in reply to
Ok so I have been thinking very hard about going to SCCA alliance for a second opinion and maybe switching there for treatment. Currently Swedish. Who would you recommend at SCCA if you do not mind.
• in reply toParscore
I left Swedish for SCCA simply due to it being a Center of Excellence and it was only a mile down the road. Celestia S. Higano or Evan Yu....however there are probably others there that are highly qualified.
Parscore• in reply to
Thank you. I am only about 5 miles from Edmonds Swedish which is why I have stayed there plus have only done ADT, but I know that soon I will have to make another choice in treatment and yes SCCA is considered the best. Wish they were a little closer.
ronton2• in reply to
I will send you a private message soon. We are both at SCCA.
I had a very nice MO here in Bend OR some 10 years ago whose knowledge and approach was limited to SOC "guidelines". When I asked about cutting edge alternatives (supported by research but not yet incorporated into the guidelines) he was amused but not knowledgeable. So I arranged to consult with Tia Higano at SCCA (Seattle) whom I consider my go-to "hired gun" for making the big treatment considerations. Together we crafted a plan specific for me and my cancer that included an alternative approach to ADT and also got me into a Provenge sequencing trial at Virginia Mason to receive Provenge for free.
The ralationship and her knowledge (that also keep in check some of my own outside-the-box ideas) has proven invaluable. Bless her and those dedicated and very smart urologic oncologists like her!
I tried to see her a few months ago but she was not seeing any new patients. How long ago did you get to see her. I have heard very good things about her.
MateoBeach, Tia Higano is the name most often referenced. Thanks so much for responding.
I did, for Stage 4 Metestatic disease, mostly for the pathology. It was both helpful and confusing on different subjects. I read the book Surviving Prostae Cancer before seeing my oncologist so I went into it fairly educated. I went to a second opinion because the book said get treatment at the best known cancer center possible and my local hospital has almost no rep and the second opinion was from a very highly respected CC and I paid out of pocket for it. The most important thing I learned about was the NCCN guidelines. They are followed by most doctors and insurance companies and will play a role through all stages of your disease.
Beware
I requested of my Urologist, a referral for a second opinion.
Unbeknownst to me, I was sent to someone that was in his same network. Told me the exact same thing so I thought my Dx was confirmed.
That was then and this is now. If I knew one half that I do now, that would not have happened. Not insinuating that it was malicious in intent but in hindsight, seams shady!!!
Except for the ADT, which I would have insisted in modifying the SoC, I’m no worse for the wear.
Jc
Agreed, it often feels like walking down a hallway and not knowing which door we should knock on. Thanks
I saw 3 top specialists in NY. 2 Recommemded the same treatment. The 3rd, a highly well known respected doc in the field recommended removing my prostate , which the other 2 docs thought was crazy. I was only his 13 th patient with met PC that he recommended this for. This was more than 7 yrs. ago. My understanding is that this has become a much more acceptable thing to do
Wow and such good results. Thanks for responding. I will certainly follow advice on getting a second opinion.
Yes- I have had a very good result. I was dx at 54 and otherwise, pretty healthy. My doc explained that although the common thinking was that removing the prostate once the cat was out of the bag was not the way most, if any other docs were proceeding at the time. However- he explained to me the 2 theories on how he believed cancer might spread, and also told me that in other cancers, such as lung and breast, the area where the cancer has originated is removed, so he thought it was worth a try. He had ONLY done this with 12 previous young and otherwise healthy men, and fully explained the risks of prostate cancer, but I was willing to take the risks if it had any chance of improving my treatment. So- I went for it. I think recent studies have either shown it is helpful to remove it or it remains unclear. Regardless, I am glad a took what I thought was a reasonable risk to do what I could to fight this nasty disease. BTW- he also had me do ADT intermittently for the first 5 yrs, which I believe was agst protocol at the time too. Now, I see many others are taking "vacations" from their treatments.
Best of luck with your 2nd opinion and with your health.
Also- my brother was just dx and I suggested he get a 2nd opinion, which he is going to do
I got 2nds on my biopsy slides , RP surgery and Radiation treatments. And of course asking questions here and reading everything you can about this disease is very important.
Bob
14 years ago my hubby was diagnosed with PCa, went for a second opinion on treatment options. Found that the biopsy was misread as PCa when it was Pin2. Not yet PCa. He got 13 additional good years before the PCa emerged as Gleason3+4, had radiation and ADT last year. Always get a second opinion on biopsy as well as treatments.
That is wonderful. I, too, think that I had very little time to "think" before I was assigned to my current MO. He and I have no rapport, though perhaps my anxiety at times puts him off. I want to make sure I am doing what is most up-to-date and accurate. Many thanks for your replay, Okayjan
I see patients from 40 states. 400 patient visits/ month. Located Omaha, NE....Urology Cancer Center. Patient last week was a physician from Venezuela. If insurance doesn’t pay I wont charge you . Our main focus are clinical trials and thinking outside the box. Happy to give you my cell phone number. Check out my reviews on healthgrades or vitals.com
Dr Luke Nordquist
Dr. Luke, I so appreciate your response. Please send your cell #. I plan to look at the websites you referenced. This is a disease that needs creative thinking.
4026592819 happy to help anyway i can
It initially helped me eliminate doctors I didn’t have rapport with or who didn’t provide the service I wanted.
As the author of three successful books on PCa, I can tell you that it is very important to get two or in some cases, three opinions. This is particularly important when the first DR only recommends Guideline SOC treatments. The approach saves many men, but sadly sees probably even more men succumb to the disease. My brother succumbed two weeks ago, when there were still non - SOC treatments available to him. I am confident that he would be alive today and probably ongoing, if his oncology team had allowed treatment with Veyonda, etc.
Thank you, Alan, I will heed your advice and look for one of your books, too. I am surprised by the refusal to give him Veyonda. That is hard to fathom given what I have read--based on your postings--about this new treatment. I appreciate the time you've taken to respond.
NIKE - JUST DO IT!
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 02/02/2020 11:26 PM EST (The Palindrome day)
Thanks, Fairway, I appreciate your response.
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