New here and to this disease

[Grateful4this]

A 2nd blood test in late Oct confirmed my PSA suddenly rose to 17. This was first time it exceeded 1, with last prior low score test in Jan. My Gleason's are 9 in 4 areas and 7 in others. I am getting a bone scan and MRI within the next week. My urologist suggested Dr Samir Taneja, who i have heard great things about, or Dr William Huang, both of NYU, and feels I should have a prostatectomy within 30 days if possible, and maybe followed by radiation. I will seek a second opinion although in my limited knowledge his suggestions seem to make sense. Any feedback, especially regarding the practitioners will be appreciated

[Javelin18]

Hi Grateful, so sorry to hear about your diagnosis. It sounds like you are getting good referrals.

I’m glad you found this site so quickly after your diagnosis. This is a knowledgeable and compassionate group. There is active discussion and a good deal of healthy disagreement, but I think that’s a good thing.

[Grateful4this in reply to Javelin18]

Thank you for your response Jav18. Feeling not alone is important and helpful. Also, the knowledge found here astounds me each time

[Tall_Allen]

I know the shock of that kind of diagnosis,and the immediate emotional reaction to "just cut it out." But that is not your best option. There is a very high risk of leaving cancer behind if you have a prostatectomy. And the toxicity of following it with radiation is much higher than if you just had radiation in the first place.

Pending bone scan/CT results, you seem to have what is called "high risk" localized prostate cancer. You should also check for distant metastases with a new kind of PET/CT scan called a PSMA PET/CT scan.

The kind of therapy with the best record of cure is called "brachy boost therapy."

prostatecancer.news/2018/03...

Brachy boost therapy for you would entail about 20-25 treatments with external beam radiation to the whole pelvic area AND treatment of the prostate with brachytherapy (called a "boost") and about 18 months of androgen deprivation therapy (ADT).

I also suggest you discuss with your radiation oncologist the PREDICT-RT randomized clinical trial. This new trial uses the results of a genomic test called "DECIPHER" on the biopsy tissue. Those with a lower Decipher score are offered a less intense treatment whole pelvic radiation with either 1 or 2 years of ADT, while those with a high Decipher score are offered whole pelvic radiation with either 2 years of ADT or 2 years of ADT+ Erleada (a new hormonal drug).

nrgoncology.org/Home/News/P...

I suggest Memorial Sloan Kettering in NYC. It may be difficult to see Michael Zelefsky with short notice, but I know Sean McBride there is very good.

[Grateful4this in reply to Tall_Allen]

Thank you TA, this is so insightful and helpful. I was about to reach out to MSK for a 2nd but will now target these 2. In the meantime I will research these scans and therapies to gain some direct knowledge and will pursue. I am very appreciative of your, and everyone's response. Thank you so much for helping today

[Concerned-wife in reply to Grateful4this]

If MSk isn’t available, We have been pleased with the care at NY Presbyterian. Drs Nagar and Tagawa. We live in SC and travelled there for my husband’s radiation. Now video consults

[Grateful4this in reply to Concerned-wife]

Thank you, i will definitely look into both and what Columbia has to offer

[Hailwood in reply to Tall_Allen]

The difficulty post radiation with out RP is that the prostate can be much more difficult to remove without damaging bowel/bladder and other areas. It is such a difficult decision and the advice you receive here is so vital in helping you come to a decision. In my case, it appeared as though the prostate could be removed in its entirety, with still a slight risk of spread and indeed distant metastases have been found in the belly via a PSMA PET/CT scan and so Lupron/Erleada has been the treatment with some side effects but I'm well enough to continue to work full time and some of the other treatments may not allow that continuation of employment. If you have a good RO/MO, then their advice is paramount and can help with your decision along all of the wonderful contributors here. Good luck my friend.

[Tall_Allen in reply to Hailwood]

That's the half-truth that surgeons often say. In truth, there are salvage treatments post-radiation that do not involve surgery, with much better results than salvage surgery:

prostatecancer.news/2017/09...

However brachy boost is so much better than surgery, that local salvage is usually not necessary. There may be distant metastases that were too small at the time of treatment to be detected, but that can be true no matter what primary treatment is chosen.

[Hailwood in reply to Tall_Allen]

Absolutely and sometimes it just comes down to who you see and how you weigh up different opinions. I’m happy with my decision but I also appreciate all of the info that you provide and what a wonderful asset you and the others are to individuals with this bloody annoying issue. Thanks for taking the time to answer.

[Tall_Allen in reply to Hailwood]

Brachy boost is the gold standard - they've been using it since the 1980s. I know that Mt Sinai offers it, and possibly others. Experimentally, you may be able to do it all with SBRT at MSK. Is there a reason you don't want to use MSK? - they have an excellent brachytherapy dept - Zelefsky is a master at LDR brachytherapy. They also offer HDR brachytherapy, and have a super SBRT facility. It's as close to one stop shopping as it gets.

[Grateful4this in reply to Tall_Allen]

I would love to speak with the Docs at MSK but time seems to be an enemy. I am hoping to resolve and get on their calendar today for a near future appointment. I asked to accelerate my knowledge of the alternatives

[Tall_Allen in reply to Grateful4this]

I really like Sean McBride, if you can get to see him.

[Grateful4this in reply to Tall_Allen]

Again, thank you TA. I can't say it enough.I am reading a lot of good things here, many are regarding Brachy boost. Do you or anyone know if MSK is the only center offering this type of treatment in NYC area

[Grateful4this in reply to Hailwood]

Thank you Hailwood. Your experience is another piece of knowledge for me which I am extremely thankful for. I appreciate all the advice, especially regarding RO/MO . Glad you continue to work, as it is encouraging to me

[Schwah]

Listen to TA. I’ve read everything I can and talked to many people in the know. He is 100% right. Interestingly every specialist you talk to will make you feel like you’ll die without their treatment. Is it the money or their bias? I don’t know.

Schwah

[Grateful4this in reply to Schwah]

Thank you Schwah. I was hoping he would respond, and I will pursue all his suggestions. I don't know their motivation and it's a shame when you have to consider where they are coming from

[maley2711 in reply to Schwah]

this has not happened at Kaiser???

[Darryl Partner]

Grateful4this Welcome to our community. You mention that you did not do an MRI yet....are you saying that your biopsy was conducted prior to an MRI? Your high Gleason and many positive cores suggest a conversation with a (prostate cancer focused) oncologist would be a good idea. Doctor shopping at the main NYC hospitals gives you the opportunity to request consults with a variety of specialists. Your Christmas gift is to have caught this, and your New Year's resolution is to take care of this. And your life gift is that you found our Malecare community. You now have over 14,000 brothers you have yet to meet.

[Grateful4this in reply to Darryl]

Thank you Darryl, your advice and comments. I appreciate your optimism while I push to doctor shop as quickly and thoroughly as possible. this site provides so many benefits on all sides of the patient spectrum and is a blessing to have access to everyone's feedback

[Boywonder56 in reply to Darryl]

Well done darryl.....ty for all you do...i for one am so grateful i found this site...i know my onc is a little miffed i ask so many questions but...by being a member here i feel i ask the right ones... i encourage all members to support your team by donating....even a little$ ....merry christmas D.....b.w.

[Grateful4this in reply to Darryl]

Sorry i didn't address the MRI. biopsy was first followed by a cat scan. Tomorrow is the MRI, next week is the bone scan

[Scout4answers in reply to Darryl]

Thanks Darryl for organizing this form, I put some $s in your Xmas stocking a few days ago. Keep up the great work. I have felt like an informed consumer since finding you guys.AMP

[Costarica1961]

I had a radical prostectomy in August 2016, then salvage then androgens for a couple years, then metastatic cancer, a rising psa. Wish i would have did more extensive thoughtful research. In retrospect i like Tall_Allens approach. You choose through thoughful informed research.

[Grateful4this in reply to Costarica1961]

Thank you for sharing your experience. It is extremely helpful

[Hidden]

All the best going forward bro,walk steady.

[Grateful4this in reply to Hidden]

Thank you Kiwidave

[Omairtde]

To echowhat Javelin18 has written, I'm very glad you have joined the group and am very hapy to see that Tall Allen had reached out so quickly. There is so much good advice and support to be found here. Good luck on your journey.

[Grateful4this in reply to Omairtde]

Appreciate your thoughts and echo regarding TA

[Cooolone]

TA always provides a clear path and good suggestions, spot on!

You can't go wrong at MSKCC, and he is correct that getting an audience with Zelefsky on short notice I think will prove almost impossible. But keep in mind that these Oncologist all work together as a team, they don't exist in a vacuum while standing shoulder to shoulder. If he can't see you, it's not like you're getting any inferior care there. You might also consider seeing a Medical Oncologist that has a wider field of view...

For an advanced patient, there may be benefit later with the gland removed, but that benefit may be marginal when considering early treatment with aggressive therapy (radiation) and extended (2-3 year) hormonal therapy has shown great results.

I shied away from my original RO who suggested Brachytherapy and RT along with 2-3 years of ADT because I was terrified of the ADT based upon what I had found as I researched it online. He was way to aggressive for me at the time. He was probably spot on though in his guess that I was T3b and more. Anyways...

I went with RP in the hope of falling into a very small percentage of patients in my stratification that would benefit from it, and with the notion that I wanted the cancer OUT! Unfortunately, I had positive margins and persistent PSA and went into immediate salvage therapy with ADT anyways, lol. Only benefit now is knowing that IF PSA shows itself, I know it's not in the Prostate, hahaha, a small, very small benefit at this stage because it doesn't change anything in regard to what may come next.

Now everyone is different, so my story is my own! I just share it to allow a glimpse into my state of mind as I recall. We all need to educate ourselves and advocate for our own care. You have done well to find this forum early and seem to be doing just that very thing. Don't be afraid to ask questions, and make sure you get an answer you understand. Don't be afraid to ask 2x or 3, until you DO understand, even if it requires another appointment. Write everything down, or audio record your consults. Bring someone with you because it's very weird as discussion is taking place, you hear differently than someone else in the same conversation. So those notes and recordings come in handy when you want or need to review information.

Check the NCCN website as well, as it has a great section for PCa that will walk you through everything from diagnosis to treatment.

Best Regards

[Grateful4this in reply to Cooolone]

This is all very sound advice and you struck a nerve regarding my fear of 2-3 years of ADT. But fear surrounds this situation so research is the key. thank you Cooolone

[westof]

Welcome,

Hi, I totally agree with Tall Allen.

3 years ago my dx was G9, PSA 28.

My urologist NEVER suggested a method of treatment and referred me to a local radiation oncologist.

Met with him and decided that his plan was insufficient (I did my homework).

On to Memorial Sloan Kettering!

Dan Shasha was my RO and after reviewing my fusion biopsy, he provided me with a bit of assurance that I could beat this thing.

Dan did HDR Brachy and 25 days of IMRT.

Bottom line: my August scans indicated the absence of any metastasis (Hmm... I posted my skepticism of the results 🤔).

However, I feel great and recent blood work looks good!

Since this is your maiden post, I'll show you mine:

healthunlocked.com/advanced...

The members of this forum are amazing and provide a huge shoulder to lean on.

Best,

AJ

[Grateful4this in reply to westof]

Your story gives me hope and confidence. Thank you for sharing it!

[Darryl Partner]

Nice to read that Dr Shasha was your doctor. He, along with Joe Wagner MD, and I, started the first Malecare group, in November 1997.

[j-o-h-n]

Greetings Grateful4this,

Don't Panic..... If you're in the NY area I also would recommend Memorial Sloan Kettering cancer center. One of the best if not the best. Post here and ask questions, lots of smart guys here (excluding me)to answer your inquiries..

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 12/02/2021 10:18 PM EST

[Grateful4this in reply to j-o-h-n]

I am embracing all the knowledge that is here even when it scares me, it still helps. Thank you

[Javelin18 in reply to Grateful4this]

It can be scary, but I’m convinced knowledge is power. Every research paper starts with a summary of the odds. I skip past that, and keep in mind that the average includes people that don’t take an active role and some that give up at the start.

I think of the scene in Star Wars where their heading into an asteroid field, and Luke Skywalker tells Han Solo the odds of navigating an asteroid field. Han Solo says, “Never tell me odds kid.”

[Grateful4this in reply to Javelin18]

Giving up isn't an option and the guys on this site give me the courage to believe that

[j-o-h-n in reply to Grateful4this]

To G4T,

Hope you have large shoes..... cause all of us were in those shoes when we heard the C word. With knowledge and support you eventually will settle down and be one us boring guys. Take a deep breath and try to smile.... We are here to help... Keep posting we need you as much as you need us......

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 12/03/2021 12:21 PM EST

[Grateful4this in reply to j-o-h-n]

Can't wait to get there j-o-h-n. Thanks for your positivity when it is much needed

[Burk]

Hi Grateful, Welcome to this group. Amazing knowledge available here. I found myself in your shoes last year. G7 in 11 of 12 N0M0. I consulted with multiple Dr and was weighing the choice of RT vs. RP. I was afraid of the SE of RP - No nerve sparing & 28% chance of permanent incontinence.What clinched my decision was a comment from Dr Han a renown Dr from John Hopkins. He said to me, "Surgery will not fix your problem". I chose RT with ADT and am very glad that I did.

Of course, the results of your scan will weigh heavily on your treatment options. Comparing your DX with mine, if I was beyond a cure from RP you probably are to. This disease is very systemic. Note all of the men on this site who have had RP and then a recurrence.

Wishing you the very best outcome! We're in this together!

[Grateful4this in reply to Burk]

Thank you Burk. The knowledge I am gaining is sometimes as paralyzing as it is empowering at this stage but without it i was stuck in the paralysis . This group is a tremendous help in so many ways

[BigTom123]

Sounds like your PC is aggressive and I followed the RP with radiation treatments and ADT. Vaya con dios

[Grateful4this in reply to BigTom123]

Thank you Tom, the best to you on your journey

[Scout4answers]

Greatful 4I had a similar diagnosis in June and like you I wanted info. and I wanted to get something done yesterday

Something to consider.

First find a Medical Oncologist or perhaps an Urologist to get you started on ADT and one of the second generation drugs like Zytiga. This is Standard of Care almost everywhere. This will give you plenty of time to decide about what kind of radiation or surgery you want done and who you want to do it .

I have been told The optimum time for radiation is 3-6 months after starting ADT which will shrink your tumors and put them too sleep.

Take your time and meet with several Radiation Oncologist's, 2nd and third opinions are very common and good ones will not be offended.

You have tapped into a wealth of knowledge here early in the process, like me you got lucky.