Newly Diagnosed Prostate Cancer

[kiyo]

Hi, I am new here. I came to this site because my husband was just diagnosed with prostate cancer last week. MRI PI RAS 5 with an extracapsular extension, cores 4/12 positive, Gleason 7 (4+3), and PSA 4.8 (PSA 2.2 in 2022). No involvements with lymph nodes and bones on MRI.

All of these seem to put my husband in the category of locally advanced prostate cancer. Because of ECE, we are told surgery will not be his best option and the risk of recurrence is high. We are devastated by his diagnosis because the cancer seems to be very aggressive.

Right now we are trying to get a consultation with a radiology oncologist as soon as possible. But the wait time is several weeks away. Meanwhile, I am scared whether the cancer is spreading quickly while we are waiting to be seen. In particular, I am very concerned that by the time when he sees a radiologist, the cancer may look differently from his MRI done 2+ weeks ago. Right now we have no medical oncologist and, other than what we are reading on the web, we have no idea about his treatment options and plans.

So I wonder if there should be an updated imaging before planning out a radiation treatment and if we should get a medical oncologist on board at the same time.

Any thoughts and suggestions would be greatly appreciated.

[Tall_Allen]

He can start ADT now, which will stop all possibility of progression. The RO will require imaging to do his plan.

[kiyo in reply to Tall_Allen]

Thank you for your suggestions. We hope to consult with a medical oncologist to start the ball rolling ASAP. But, we have to have referrals to make these appointments and they are typically several weeks away. Very frustrating when needing treatment for an agressive cancer.

[GP24]

A Gleason 4+3 is the lower border of high risk prostate cancer. Most members in this forum have more aggressive cancer and seem to live ten years or longer.

Prostate cancer grows slowly so you do not have to worry that anything changes in the coming weeks or even months. Therefore there is no need to update the imaging before your appointment.

I think you can get surgery too. The ECE can be removed by the surgeon during the removal of the prostate. Then you do not have to get ADT for quite some time.

[kiyo in reply to GP24]

Thank you for your suggestions and advice. We will check out all the possibilities you mentioned. Besides ECE, my husband also has cribriform present in one of the cores, which is indicative of a very agressive cancer and high risk of metastases. We really want to get a consultation on how much time he can afford to wait while we decide on a best course of treatment and to avoid any further spreading. But so far the waiting time to get a oncologist's consultation is several weeks away. It frightens me to think about the consequences from delaying treatment in his situation.

[Nusch]

As TA said, most important is starting ADT immediately, which will stop the train. Then you don’t need to hurry. And before radiation the do a planning CT scan, so don’t worry about that. With the GS of your husband a long life is still possible. Try to find good radiation oncologist - you can also ask for suggestions in this forum if you provide your city of living.

[kiyo in reply to Nusch]

Thank you so much for your information and encouragement. I pray that there are still more years for my husband. We have an appointment with his urologist next Monday and we will ask for a referral for medical oncologist. Hopefully they will start him on ADT or something to stop the train. We just got a radiologist an appointment also next week at Swedish. But before seeing the radiologist, we really would like to see a medical oncologist specialized in treating prostate cancer. We are living in Seattle and we have called around including UW, Swedish and Fred Hutch. Nearly all of them have a long waiting time. Very frustrating. Thanks again!

[Nusch in reply to kiyo]

You can also ask for good doctors here in this forum and most likely you’ll get a fast response.

[Derf4223]

My non-doctor $.02. He must start seriously exercising now, 1-2 hours daily if possible, every other day at the least: resistance, aerobics, cardio. He must get a DEXA scan and his T levels now. The biggest killer of men with PCa is a cardio-vascular event (CVE.) Exercise cuts the odds of dying from PCa up to about 60-70% -- better than any drug or surgical intervention.

How did I hook up with an oncologist? Largely the luck of finding a PCP in a regional hospital/clinic group who referred me to a good urologist there, who in turn referred me to their oncology clinic. Said oncologists turned out to be employed by Mass General Brigham and are extremely knowledgeable and have good diagnostic and treatment tools to apply.

Last not least, stress is a big factor in health under the best circumstances, and even more so when one has cancer. Long walks work well for me (it doesn't hurt that my wife and our dog likes them too.)

[kiyo in reply to Derf4223]

Thank you very much for your postive thoughts and advice. Stress is definitely not good in particular during this time. Both my husband and I are long-time avid hikers, so we are still trying to get out when we are able. Maintain our physical and mental health is a must no matter what happens. Thanks again for your suggestions and best luck with your treatment!

[Concerned-wife]

is he scheduled for a PSMA scan? Thought that was standard of care now but there’s will comment. Isn’t it good to do now at his PSA level ?

[kiyo in reply to Concerned-wife]

Hi, Thanks for your reply. He has no PSMA scan scheduled. When we ask for it, his urology said it is not neccesary. I would disagree if he may end up doing either surgery or radiation. That's why we are trying to get to a urology oncologist, but we have to have a referral and waiting time seems to be always several weeks away. His PSA level tested a month ago was 4.8. I am sure it has increased by now. We are very anxious to get the ball rolling, but everyone else here does not seem to be concerned about the speed of his care. Very frustrating.

[JazzPoet in reply to kiyo]

3 different local Urologists minimized and delayed treatment for my husband for YEARS (5) until I finally pushed for another MRI…tumor was up against the margin of the prostate and 4 of the six quadrants showed tumors…doc STILL told him he could delay having his prostate removed for up to a year 😳 he had surgery 4 months later and it had already spread beyond the prostate…well DUH…that’s why up against a margin is a critical factor. Keep advocating! I used the line “go ahead, PROVE me wrong” to the last urologist …and of course he couldn’t. My husband was very sick and the care was negligent. I beg people to advocate, listen to your instincts and follow through. These doctors don’t have to live with the negligent consequences, we do.

[kiyo in reply to JazzPoet]

JazzPoet, Thanks for sharing your experience. I am very sorry to hear what you and your husband had gone through. You absolutely did the right thing to speak up and advocate for your husband. Our loved ones and our families know the best about our own perspectives and goals than anyone else on this difficult journey, so we have to speak up and advocate for our loved ones and ourselves. Keep up your advocacy for your husband. I will do the same for my husband, so that he will get timely and best quality of care. Wish your husband best luck with his treatment and at same time take care yourself. Positive thoughts to your way.

[Concerned-wife in reply to kiyo]

Perhaps look atNCCN guidelines. If, indeed, the PSMA scan is now standard of care, show this to the urologist And insist on the scan.

Ps UroToday is an excellent source of info

[kiyo in reply to Concerned-wife]

Hi, Thank very much for reminding me to check the information on standard care. I see PSMA is recommended, so we will request again with his radiologist before the treatment. Thanks again for your help!

[JazzPoet]

go to MD Anderson hospital in Houston, get a consult. Where you go first matters. My husband couldn’t be seen for 12 weeks locally and that is just unacceptable. He was seen in 22 DAYS from our first phone call.

[kiyo in reply to JazzPoet]

Hi, Thank you so much for your reply and suggestion. Glad MD Anderson could see your husband much sooner. Waiting with unknowns and with an agressive cancer are frightening. Did you have to travel to Houston? Do you know if they have telehealth consultation? We are in Seattle, Thanks very much for any information. Wish you the best luck with your husband's treatment at the Anderson.

[JazzPoet in reply to kiyo]

We did travel to Houston…35 sessions of radiation …they found mets following a prostectomy …that the local pathologist completely missed…it is terrifying how much misinformation and a whole lot of bullsh*t is out there in the medical community. I got fed up, my husband is retired and I switched to working remotely for 8 weeks. It was the best decision we ever made.

MD Anderson just announced that they are teaming with Rush hospital and will have a Chicago satellite hospital soon.

[NanoMRI]

As you asked for “Any”…. Nine years ago, I was 4+3, PSA 10.4, spread likely, and after many consultations had surgery, based on multiparametric MRI findings indicating to radiation docs my tumor was just too close to critical bits for safe radiation margins. I remain grateful the primary tumor burden was removed, for several reasons. I did have lymph node involvement, confirmed two years later by salvage lymph node surgery.

Yes, time is a factor but not in days, weeks nor months. Based on my experiences use this time to get genomic testing, blood biopsy and a PSMA PET; and possibly fluciclovine PET for comparison. (Based on my experiences with three MRIs, not likely an updated MRI is needed at this time – so long as it was multiparametic (hopefully was).

Also, I decided nine years ago and since to defer ADT as long as possible, despite being recommend ADT and chemo Stampede Trial. So far, this has been realized. I am post RT, salvage RT to prostate bed and salvage lymph node surgery. Hope this helps. All the best!

[kiyo in reply to NanoMRI]

Hi, Thank you very much for sharing your experiences. I am very glad your choices of treatment are working out for you. Due to the complexity of prostate cancer and many treatment options, it is so important to have a personalized treatment plan to give a patient the best shot. Right now we are doing a lot of reaserching and reading, so we hope we can make the best informed decision on my husband treatment plan. Thanks again for sharing. We wish you the best luck with your treatment,

[NanoMRI in reply to kiyo]

Thank you This is indeed a challenging beast and we face many disparities on diagnosis and treatment options. I found my way to my personalized treatment plan by being a patient detective, patient scientist and strong self advocate. All the best!

[Tony666]

if you want to put a damper on any further cancer growth while you wait for appointments and scans and decide a course of action, a more mild alternative to adt would be bicalutimide. That’s what I did for about 6 weeks before deciding on a course of action. Just a suggestion.

[kiyo in reply to Tony666]

Hi, Thanks for sharing your experience and for your suggestion. We will check out bicalutimide for sure. Tomorrow my husband will meet with his oncologist and we will discuss with him about options on bicalutimide or an adt. Thanks again for your help and best luck with your treatment!

[kiyo]

I want to thank those who responded to my first post, and I appreciate many good suggestions and advice; they are helpful. I am reporting back that we met with the urologist today to discuss my husband's diagnosis and treatment plan. His urologist recommended Lupron injections before starting RT. We were told that the goal is to reduce the risk of cancer spreading and to make RT more effective, just as what Tall_Allen suggested.

Now I have another question ---- does anyone know if Lupron is relatively more effective and more tolerable than other types of hormone drugs like LHRH antagonists?

I read Lupron can cause a flare in testosterone levels for a few weeks, whereas LHRH antagonists don't. I am concerned if such a flare could encourage cancer cells to grow, even temporarily.

Thank you very much for any information.

[CaptainKrunch]

Hi Kiyo... 62 yo G9 w/Lymph node spread w/cribiform DX. Receiving treatment at Kaiser on Capital Hill. It took 3 months (mid Oct 22 through mid Jan 23) to complete all diagnostics and start my 2 year Lupron/Abiraterone/Prednisone journey (w/8 weeks of M-F radiation therapy last Sep/Oct). Deepest apreciation for the anxiety inducing time between awareness and treatment. Happy that you're advocating for hubby... he's blessed to have you. Reg. Lupron T spike, mine lasted one blissful day (and I think they prescribed something prior to the first every 4 months shot to minimize the bliss). PSA dropped to undetectable within 30 days of starting ADT. Discovered I've been B-12 deficient for decades a few weeks ago. Falsely blamed 14 months of fatigue and fog brain on the ADT... which has cleared since starting 1000 mcg of OTC B-12.

[kiyo in reply to CaptainKrunch]

Hi CaptainKrunch, Greetings from Seattle! Thank you so much for your reply and for sharing your experiences. My husband and I have always been advocates for each other throughout the years, and we have to. Thank you for your kind words. My husband is currently with the Swedish on the 1st Hill and will consult with a radiology oncologist on Wenesday to discuss options. We will contact his urologist asking for something to releive the T flare when he starts on Lupron. Best luck and wishes with your treatment and hope you can get out as much as you can to enjoy the beautiful spring in Seattle. Thanks again!