Just got pc diagnosed - worried and lost

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three 5's and a jack
Regular Member


Date Joined Jul 2017
Total Posts : 180
   Posted 11/14/2017 7:06 AM (GMT -7)   
Metta to you and hoping for good outcomes
Looking for the 4th 5
69yo weight 7/1-283# on 10/17 216# projected 200# by treatment time
PSA 6.01 6/17 & 6.07 on 10/11/17
BX 8/04/17 DX 8/11/17 5/16 cores positive all on left
L mid/base 4/6 4+3=7 25%
L apex 1/2 3+4=7 30%
Sec opinion from UofW same GS7 but called overall 3+4=7
Markers and scans Dec 7/8 SBRT Dec 18-22 Swedish in Seattle Dr. Robert Meier

Cyclone-ISU
Veteran Member


Date Joined Oct 2014
Total Posts : 971
   Posted 11/14/2017 3:15 PM (GMT -7)   

Hello Microchip,

You've found a tremendous group here --- members contributing from every corner of the globe ---

Our common goal? Supporting each other --- sharing first-hand experiences --- sharing news about new breakthroughs --- offering advice, when asked --- and through it all --- friendship, fellowship, and a tremendous sense of camaraderie emerge for readers and members who gather here.

You're already educating yourself --- asking important questions --- getting the preliminary tests and scans taken care of --- and from there, a TREATMENT PLAN will emerge. You're already taking a proactive approach --- and that's the main goal.

Once you've gotten a plan of action in place, you'll feel a sense of relief --- because then you're getting STARTED on your "battle plan" --- and there's a feeling of empowerment and hope that emerge when that happens.

Fortunately, with so many dedicated members --- we have members here who have insight into all treatments that might be in your future.

I was diagnosed when I was in my 40s, as my treatment history reveals below, at the end of this message. I now stand alongside my father, who is also a prostate cancer patient, and he is about your age, Microchip.

Ironically, the doctors who have been treating my father for the past few years now take care of my case, as well.

I feel fortunate to have already benefited from some of the new treatment approaches and breakthrough medications which have been F.D.A. approved within the past few years. These new treatments and medications are helping many of our members here on this forum.

The treatment "arsenal of weapons" against prostate cancer has greatly increased in the past decade. Cheers to the ongoing research for future breakthroughs, as well!

Along the way, you might find encouragement from the thread entitled LETTERS TO THE NEWLY DIAGNOSED, which you can easily find by typing that title into the search bar located in the top right-hand corner of your computer screen. All of us have stood, at that point in time, where you now find yourself standing --- with the sudden, unexpected news of a health diagnosis.

We're here to support you --- encourage you --- and welcome you here as a comrade.

Let us know how you are faring --- stop by often for a visit --- we'll leave the front porch light on for you, Microchip. We're all in this ... TOGETHER!

Handshake of support, from across the miles,
"Cyclone" ~ Iowa State University
PSA At Diagnosis In Year 2013 : 138
Initial Diagnosis: Advanced Prostate Cancer, With Metastases In Both Lungs
Age At Diagnosis: 48 years
ADT Treatments: LUPRON, FIRMAGON, and currently ZOLADEX
Subsequent Treatments: Chemotherapy (TAXOTERE) & now ZYTIGA
Additional Consultant - Dr. KWON - Mayo Clinic
Current PSA Level: < 0.50, Treatments Ongoing

microchip
New Member


Date Joined Nov 2017
Total Posts : 14
   Posted 11/15/2017 6:24 PM (GMT -7)   
Thanks Saipan,

I will need it. I still have not learnt much about all this but I am
trying. There is a ton to lean all about these abreviations etc.
It seems like you are doing well.

Micro
Age 75 - diagnosed Nov-2017
PSA 7.8, Gleason 10 (5 + 5)
Biopsy High Grade
11/14- full body bone scan & CT scan

microchip
New Member


Date Joined Nov 2017
Total Posts : 14
   Posted 11/16/2017 5:43 AM (GMT -7)   
This is a great site but I am too overwhelmed;
- So many things to learn.
- so many acronyms.
- so many therapies
- so many medications
- thousands of posts
- thousands of replies.
- lots of special threads and blogs

I could not possibly read all this info yet alone absorb it.
How does one go about following advice or being able to tell
a doctor what choice they want or what they should do.

I am concerned with the could of, would of or should of dilemma.Since I am so new,
how have some of you handled this issue. I want to make the right choices.

Saipan Paradise
Regular Member


Date Joined Sep 2017
Total Posts : 60
   Posted 11/16/2017 7:24 AM (GMT -7)   
A few suggestions if you’re feeling overwhelmed, Microchip.
— Since you’re G10, focus on the “Gleason 9 (and 10) Crew” thread.
— Slow down, take your time. You don’t need to be perfectly informed before you talk with the Dana Farmer team. Well informed, yes, but don’t drive yourself crazy. You don’t need to understand everything at once.
— Make a list of questions and bring it with you to your appointments at DF. Ask anything — there’s no such thing as a silly question.
— After you listen to what the DF team have to say, come back to HW with questions, I’m sure those with much more experience and knowledge than I will be happy to answer them for you. Also, don’t be shy to call DF or any other physician you consult with followup questions. The availability of a team to respond to your personal needs and make you feel taken care of is an important factor in deciding who to trust with your treatment, IMHO.
—At DH or elsewhere, consult a radiation oncologist and medical oncologist as well as surgeons to get a variety of perspectives and treatment options.
—Once more, SLOW DOWN. Go to the movies, play with the grandkids, whatever floats your boat. Don’t stop living your life. Set aside time each day to learn about your PCa, but leave time to live.
Best wishes,
SP.
Age 60 at dx
Dx July 2017 after biopsy G8 (4+4), 5/13 cores, bone scan clear
RARP Aug 11, 2017 (Dr Patel)
Post surgery pathology: pT3a, tumor 30% of gland, ETE, seminal vesicles and 3 lymph nodes clear
PSA 1/2016, 2.9
4/2017, 7.2
9/25/2017 (first post-RARP), 0.13
10/10/2017, <0.05

Michael_T
Veteran Member


Date Joined Sep 2012
Total Posts : 2512
   Posted 11/16/2017 7:26 AM (GMT -7)   
Yep, there is a lot to learn. And in all truth, I've learned more from this site *after* I made my treatment choice than before. But I do think one of true keys in moving forward is to find a doctor(s) that can explain your options to you in language that makes sense to you.

But if I could provide an overly-simplified decision tree for you, here it is along with some basic acronyms to learn. (And keep in mind, I'm not a doctor.)

You're high risk due to your G10 diagnosis. But if your scans are clear, you have the ability to try for a cure. So let's follow the cure path...

Your main options are surgery and radiation. Urologists are surgeons and they are the ones to discuss your surgery options with you. Surgery could be curative, although as a G10, there's greater risk of local spread (which wouldn't show on the scans) and the chances you will need SRT (salvage radiation). Many high risk guys (myself included) chose not to have surgery since it meant the possibility of having side effects from both surgery and radiation. Also, you're 75 and that's on the older side for surgery since it could take longer to regain continence.

If you go radiation, there are two main paths: brachytherapy and external beam therapy. In brachytherapy, radiation is inserted directly into the prostate. Even then, there are two types: LDR (low dose radiation), which are radioactive seeds that are permanently implanted in the prostate and HDR (high dose radiation) where they insert the radiation and withdraw it. Certain doctors practice each type.

For external radiation, there is IMRT (intensity modulated radiation therapy) and SBRT (stereotactic body radiation therapy). I'm over-simplifying, but the latter is higher dose and requires less treatments than the former.

And...as a high risk guy, it's common to have a combination of brachytherapy and external beam radiation, which is what I had. In fact, there are some stats indicating this has the best results for high risk guys.

Lastly, high risk guys generally have hormone therapy (HT), which is more correctly called androgen radiation therapy (ADT), in which drugs take away your testosterone to make the radiation work more effectively. (PCa cells need testosterone to grow in the early stages.)

Of course, it's the doctors that can really inform you of all of this. At the same time, the more you can absorb the framework and your options, the better prepared you'll be. Come back and ask questions and we'll try to help.
Age 56, Diagnosed at 51
PSA 9.6, Gleason: 9 (5+4), three 7s (3+4)
Chose triple play of HDR brachy, IMRT and HT (Casodex, Lupron and Zytiga)
Completed HT (18 months) in April 2014
3/17: T = 167, PSA = 0.13

Dogdays
Regular Member


Date Joined Jan 2017
Total Posts : 114
   Posted 11/16/2017 8:16 AM (GMT -7)   
Excellent advice from Saipan and Michael T. Relax and breathe. We know how overwhelming and confusing this diagnosis of cancer can be. Its one day at a time. Don't let the I should have done that bug get to you. Meet with your doctors. Surgical and radiation. Each treatment carries its own set of side effects. You will need to decide what you will be able to accept and live with. As Michael T said, being high risk, GS9, what is referred to as "triple play" is an option for you. I also followed that treatment plan although mine was a little different. ADT began in March, LDR (low dose radiation) brachy in July, followed by SBRT (stereotactic body radiation) in late August. i will continue with ADT for at least another year.
BTW......you mentioned abbreviations. On the forum page, there are a couple of stickys. Give them a look. There is a lot of good advice, abbreviations, and support from your brothers and sisters there.
Best of luck
Age at Dx. 63
PSA 1/08 1.4, 12/16 12.17, 4/17 3.8, 7/17 1.05, 10/17 <.05 (HT)
GS 9 (4+5)
CT Scan and bone scan 1/17 both negative
2/2/17 prostate MRI.
2/27/17 pelvic bone biopsy done. No mets
3/7/17 Started HT. Degarelix, 4/17 lupron (1-2 years)
7/7/17 Brachy (Zelefsky MSK)
8/25/17 SHARP (SBRT) finished at MSK

Tall Allen
Veteran Member


Date Joined Jul 2012
Total Posts : 8827
   Posted 11/16/2017 10:58 AM (GMT -7)   
You do have time to make a decision. Even high risk PC is slow growing. there was a study that showed that even for high risk guys, those that waited 3 months between diagnosis and radiation treatment had the same outcomes as those who rushed to treatment. Take your time.

Focus on what is at hand, instead of what may occur in some distant imagined future. Take it one step at a time only.

The first thing to do is to confirm your diagnosis. A bone scan/CT will detect any large tumors that have grown in bones , and the CT scan will detect any enlarged lymph nodes that may have been invaded by cancer.

With confirmation that it hasn't spread beyond the pelvic area, the next step is to decide on which curative treatment to pursue.

I think Michael-T broke it down very simply and elegantly. if you want to know the numbers attached to your two options...

(1) External beam radiation to the whole pelvic area with a brachytherapy boost to the prostate alone.
(2) External beam radiation to the whole pelvic area only

Option 1 is quite a bit more curative than option 2. 83% of high risk men seem to have been permanently cured with option 1, compared to 62% with option 2.

However, there are more urinary side effects with option 1. Late-term serious urinary side effects (late term means they show up more than 6 months after treatment) occurred in 1 in 5 men with option 1, and 1 in 20 men with option 2. So if you have a history of urinary difficulties, you may prefer option 2.

There are two stickies at the top of the HealingWell's prostate cancer forum. One is a list of all the abbreviations. The other is an explanation of all the medical information you are likely to run into.
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
SBRT 9 yr onc. resultsSBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog

microchip
New Member


Date Joined Nov 2017
Total Posts : 14
   Posted 11/16/2017 11:27 AM (GMT -7)   
Thanks everyone,
This clears up a lot of my anxiety. There is plenty off time.. Relax and take
the time I need, OK, I know it won't take three months for me to have a action
plan. Maybe a week or two. We are waiting for the two scan results, today or tomorrow
I expect it would be great if I could do the cure path. If not, I will need the advice for
the path with both scans being positive.
I have put my life on hold while I study and research my situation.
You all and this site have been a god sent. We will survive. I am also spending time on the G10 thread,
great place for info.
I am also learning the talk. I still have to walk the walk as they say.

Microchip
Age 75 - diagnosed Nov-2017
PSA 7.8, Gleason 10 (5 + 5)
Biopsy High Grade
11/14- full body bone scan & CT scan

microchip
New Member


Date Joined Nov 2017
Total Posts : 14
   Posted 11/16/2017 11:48 AM (GMT -7)   
Thanks Cyclone,
Thanks for the support. It sure helps to know so many
are there for me. Your thoughts and advice are appreciated.
I will use this site as my log to keep you all informed and ask for help.

Microchip
Age 75 - diagnosed Nov-2017
PSA 7.8, Gleason 10 (5 + 5)
Biopsy High Grade
11/14- full body bone scan & CT scan
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