Just Diagnosed and Searching

[UncleBud]

Hi, I was just diagnosed with prostate cancer. I'm digging into research, taking copious notes, educating myself. Seeing radiologist oncologist soon. Signed up for this to learn from others who are further along in their treatment.

[Javelin18]

Welcome to the group. It sounds like the cancer is still localized to the prostate. If that is correct, they may be able to irradiate all of the cancer.

[UncleBud in reply to Javelin18]

Hi Javelin, thanks for the welcome, much appreciated. Yes, still localized. I THINK it's a mild-ish case but I'll know more after Dr. visit next week. Nobody wants this and I sure don't but it's. helpful to connect with others who're farther along re: knowledge and experience than I am! Thanks, Uncle Bud

[Aodh]

Hi there, you’re welcome here. First thing, take a deep breath and exhale slowly. You have time; you don’t need to rush into any decisions yet.

You are really helping your yourself by gathering as much information as you can. Give your self time to absorb it too. Ask plenty of questions and keep asking if in any doubt.

There are plenty of people on the site who are willing to share their experience from diagnosis through treatment and recovery.

Getting a cancer diagnosis can be overwhelming, working through the potential treatment options can also be mind blowing.

I found it helpful for me to write down the options available, their likely side effects and the pros and cons as I saw them for me.

It’s useful to note that urologists often recommend surgery, radiation oncologists recommend radiation. It’s what they are trained to do.

I had to decide what I could, would and would not tolerate from treatment, it was my decision and I would hopefully live with the consequences of my decision!

You’ll need to do the same for your self. We are all different and our prostate cancer profile is unique. Our view of the side effects of the different treatment options will also be unique to each one of us.

Whatever specialists you consult, ask them all that you need to know about all aspects of your life before, during and after treatment and how both cancer and its treatment will affect you and your relationships. You will need all this information to make an informed decision.

Also, you are not alone; there are many here who were/are in your current position and are moving forward with appropriate support.

Please ask any questions no matter what they are; all questions are valid.

Hugh

[UncleBud in reply to Aodh]

Hi, Hugh.....thanks for your note. I think everything you wrote is right on. I'm new at having this diagnosis (new to this kind of posting, too) and will know more once I see the radiologist oncologist in a few days. Right now, I'm thinking my case is on the low end of all the trouble that's possible. But we shall see! Thanks for reaching out, it's helpful to connect with folks who're farther along in the same situation. It's calming. Thanks! Uncle Bud

[fishrocky in reply to UncleBud]

Hi UncleBud...I was on the same path as you...when I met with the RO she recommended radiation...I asked 2 questions--> If I were your Brother would you remove prostate or Radiation?? She said Remove! 2nd question..."Do you like your brother"? true story.Tim

[jdfamily in reply to fishrocky]

Sounds like a good radiologist!

[esperandrich]

There are many different ways to go depending on your PSA, biopsy results etc.

No clue what your tests results are but I recommend the book Keys to Prostate Cancer by Dr. Mark Scholtz; also get more than one dr. opinion about anything. Also, check into Tall_Allen's info. He can lead you to a lot of good info. Not quackery like some of the posts I have seen in the past few days.

[UncleBud in reply to esperandrich]

Hi, Thanks for your note and the good tips. I will check out the book and "Tall_Allen's" postings. It's helpful to connect with others with the same issue. Thanks, Uncle Bud

[addicted2cycling in reply to UncleBud]

UncleBud wrote for Bio --- " ... Just diagnosed with prostate cancer. Overall group is Group 2 Gleason Score 3+4=7. Had biopsy - 12 samples taken. 9 were "Grade Group 1". Two were 3+3=6, one was 3+4=7. Seeing radiation oncologist in a few days ... "

Researching is the PRIME DIRECTIVE as far as I am concerned and your *Bio* information would seem to indicate you had a TRUS biopsy. Please be aware that the TRUS method is *OLD SCHOOL* and samples very little of the prostate leaving much untouched and possibly containing higher GLEASON Score cells. IMO, a 3TmpMRI would be a next step with the added *Targeted Biopsy* if indicated and a *SECOND OPINION* by Dr. Jonathan Epstein. -- hopkinsmedicine.org/profile...

Good LUCK and keep us updated

[UncleBud in reply to addicted2cycling]

Hi, yes, I had a "needle" or "TRUS" biopsy. First visit with radiology oncologist tomorrow, will discuss treatment plan. I assume CT and/or MRI will be part of the plan...thx for the heads. up!

[Tall_Allen]

If you are seeing an RO, you are well on your way to becoming an empowered patient. That's a lot further than many ever get. With that many positive cores, I think treatment is a good idea. Know that you have plenty of time to make a decision:

prostatecancer.news/2016/08...

You may find the questions at the end of this article useful as you meet with doctors:

prostatecancer.news/2017/12...

And you may find this article useful too:

prostatecancer.news/2018/10...

[Gabby643 in reply to Tall_Allen]

Thanks again T A

[UncleBud in reply to Tall_Allen]

Hi Tall Allen, good timing especially re: "Finding Right Doctor"; I'm seeing RO tomorrow. Will "interview" him while he's interviewing me! Thanks, Uncle Bud

[MarkBC]

Welcome to the group. I was so glad I found this forum after I was diagnosed. I remember clearly all the emotions I went through at the time ... questioning, anger, disbelief, crying. The passage of a few months and the tremendous knowledge I gained from places like this made things so much better. Feel free to bring up any questions or thoughts you are having. There are so many good people here who know exactly what you are going through.

[UncleBud in reply to MarkBC]

Hi Mark, thanks for the welcome and reassurance. I'm optimistic at this point. I've done a lot of reading and research on sites my urologist calls best info sites: National Comprehensive Cancer Network nccn.org and Prostate Cancer Foundation pcf.org . Seeing radiology oncologist for first visit tomorrow...will know more then! Thanks, Uncle Bud

[HopingForTheBest1]

Start with pcf.org website and get their Prostate Cancer Patient Guide. It will provide you with a lot of answers.

[UncleBud in reply to HopingForTheBest1]

Thanks, I downloaded the guide and requested a hard copy. Also went thru their website word by word. You're right, lots of good info, easy to understand. Thanks

[A0007720]

Hey UncleBud, Read your bio. Please do give us your PSA value. Your situation seems readily curable, so don't let worry consume you. Cheers

[UncleBud in reply to A0007720]

Hi, thanks for the encouragement. Here are my stats: Grade Group 2, Gleason Score 3+4=7. PSA 7.78, up from 6.44, 3.92 before that. Seeing radiologist oncologist tomorrow, I have prepped a list of questions for him - did a lot of research online, too. Thanks, Uncle Bud

[Vynbal]

I am confused by your bio information. You write "Had biopsy - 12 samples taken. 9 were "Grade Group 1". Two were 3+3=6, one was 3+4=7" But Grade Group 1 is 3+3=6. So it would be more consistent if the 9 we're benign, no cancer found, 2 are GG 1 and 1 is GG2.

If that is the case, it affects your choices, as you may be a candidate for AS, depending on the amount of 4 in your one GG2 sample, and your overall health and family history. Further review (Dr Epstein, genomic risk) would make sense.

[UncleBud in reply to Vynbal]

Hi, thx for your note. I'm seeing radiologist oncologist for the first time tomorrow. I'll ask all about stages, grades, and a lot more. Hoping for "AS" Active Surveillance as the treatment plan. Thanks, Uncle Bud

[CHPA]

One of the very worst parts is the waiting between each step. You have read that Prostate cancer grows slowly. Okay got it. Doesn’t mean I don’t want to get answers fast.

I found the prostate cancer foundation website invaluable. Beyond that I had surgery 2 years ago at 58 and am just fine now.

[UncleBud in reply to CHPA]

Thanks for your note and congratulations on your recovery! I'm just starting out following biopsy, seeing radiation oncologist tomorrow. I'm 72 and have always been healthy as a horse. Just starting to get little health glitches - and this C-word diagnosis was certainly unexpected. Hoping for the best, though. Thanks, Uncle Bud

[Pintor]

I highly recommend the book Guide to Surviving Prostate Cancer by Patrick Walsh MD. The foremost Urologist in the US out of Johns Hopkins. He has videos on You Tube on the MaleCare channel. Good luck to you.

[UncleBud in reply to Pintor]

Thanks, I'll check out all you suggested.

[Steve507]

Welcome!

This is a great resource. Lots of us well understand where you're at with your disease. Take your time and know that from the sounds of it, you have curative options before you. Vaya con Dios

[UncleBud in reply to Steve507]

Thank you for welcoming me. Others have too. Much appreciated. Helps to be in the company of others with the same problem.........and who are finding solutions.

[Metaldraft]

Welcome in my opinion MRI-guided biopsy to verify if or what type of cancer is present. MRI-guided biopsy is performed under an MRI which allows the team to guide a biopsy needle in real-time and target exactly the area of the prostate that looked suspicious under the screening mpMRI. This approach can ensure a more accurate sampling without damaging healthy prostate tissue compared to more traditional approaches.

[UncleBud in reply to Metaldraft]

Thanks, Metaldraft. Good advice. I'm seeing a radiologist oncologist tomorrow and will ask about a treatment plan and will include "MRI-guided biopsy" in the discussion. Thx, Uncle Bud

[Teacherdude72]

The "Take a deep breath" comment is so very true! A Cancer diagnosis is scary but know this: More survive Cancer than don't! Prostate Cancer can be treated successfully as long as you get treated.I am 7yrs out on Prostate G, aggressive Cancer. Choose Radiation. Rad Onco when asked the choice question said Rad and Brachy. When told that surgeon had said "after radiation can't do surgery" she said "I have seen him do it!"

At one point she stated "You will die with prostate Cancer NOT of it.

So my advice is: you need to like and trust your doctors. If not you will second guess them. What ever treatment you choose is the best for you - keep that in mind and do not second guess.

Follow the doctors instructions to the T but question and understand the why, when, and effects of treatments and medicines. Stay active, start gym activities regularly and stick to it!

Stay in contact with this site, PM me anytime for info or support.

Biopsies can be done with 3D ultrasound probes in either method. Ask for another biopsy using the system that the Brachy treatment uses.

Be strong, live your life because its the only one you have.

ps; i am also 47 yrs out from my first Cancer

[UncleBud in reply to Teacherdude72]

Thanks, Teacherdude72, Excellent advice. We do have terrific medical infrastructure here including cancer care. I know this because my wife had a bout of cancer a year+ ago and we got to know her "team" very well. She fared great and I trust I will, too. God bless you. Uncle Bud

[GrnPndr]

Welcome to the group. One comment that was made to me was, “Don’t make your treatment decision based on convenience.” Very good advice!

[UncleBud in reply to GrnPndr]

Good advice. I'll see the radiologist oncologist for first visit tomorrow and will be asking about the plan. We're 30 miles from an excellent hospital plus a local hospital in the same network. I drove my wife that 30 miles for radiation when she had her bout of cancer - every day for weeks, up at 5am, and out the door. I will take your advice to heart. Thx, Uncle Bud

[Scout4answers]

Scholz book is a very good first read. He lays it out so you will understand your optionsMy advice Exercise! Exercise! Exercise!

Best chance for LT positive results. Start now!

[UncleBud in reply to Scout4answers]

Hi Scout4Answers, I'll google Scholz book. And I'll take the advice re: exercise. (What's "LT positive results? "Long Term"?) Thx Uncle Bud

[Scout4answers in reply to UncleBud]

Yes, long term survival. Someone said if it was a drug it would be a home run.

[j-o-h-n]

Hello Uncle, nip it in the Bud.....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 04/24/2022 11:26 PM DST - Orthodox Easter

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

Good advice, will do! Good attitude goes a long way in any situation.....particularly appropriate in this one. Thx

[j-o-h-n]

The sooner the better but make sure you've got notch doctors.....Also ask here, plenty of info.....Why re-invent the wheel.....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 04/26/2022 5:59 PM DST

[Scout4answers]

Another thought ... You might want to consult with a MO as well as an RO before you go forward. ROs are specialists and all nails look like something they should hammer .You need a team.

[Fairway]

You’be come to the right place. This site, and the group — very helpful to me. Great good luck. Fairway