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Posted 9/16/2013 5:07 AM (GMT 0)

Just diagnosed with PCa...

Scheduled for bone scan next week.

Have been reading through your experiences and have to say you are a stalwart, courageous and helpful group. Am decidedly freaked out by this situation. I have lost 12 pounds in the past three weeks perhaps from anxiety & worry. It may be good for possible surgery though, yes? Have read that surgeons prefer less girth to cut. Reading many articles on the net that reference my G4+3=7 score as being almost equivalent in risk to G8-10 scores. That weighs very heavily on my mind. Anything that your experiences have brought you that can be potentially uplifting would be greatly appreciated... Trying my best to keep a dry eye, chin up, and whenever possible... a smile on my face.

Posted 9/16/2013 5:13 AM (GMT 0)
Almost forgot...

Right side was diagnosed as carcinoma of the prostate...

Left side was diagnosed as adenocarcinoma of the prostate...

Posted 9/16/2013 5:34 AM (GMT 0)
Welcome to HW, sorry you need to be here.

It's more than a bit of a shock to hear the words, "You've got PC." Worry, anxiety, depression, anger are emotions that all of us hit after DX. It's easy to say but try not to worry. Do something nice for yourself and try to distract your mind from this for awhile. It may not be manly but a good cry or a deep loud primal scream might make you feel a little better.

At G7 and your PSA the biggest problem you'll have is deciding which treatment to chose. Surgery is a great option - don't rule it out till you've talked to a surgeon. Yes, they get cautious with the bigger folk but that isn't always a deal breaker.

I'd suggest you also look into the radiation options - brachy and beam (IGRT or IMRT) as both can be curative. Find a good RO and have a chat.

The real question is: Is the PC confined to the prostate? That's part of the thinking behind getting a bone scan. As long as the PC hasn't escaped you can have every expectation of a cure. It won't be fun getting there and normal will change but I suspect you'll be around a very long time.

Now, get your tests, talk to your medical team, do some research and make a decision.

There - I got your life planned out for the next six months. ;)

Hang in there and keep us updated on your progress.
Andrew
Posted 9/16/2013 5:54 AM (GMT 0)
Andrew,

Am 5'9" and 171lbs as of today. BMI is down to 25.5. So I am thinking the weight thing for possible surgery will not be an issue. Been worried about bone issues. Both wrists have been hurting much more since March '13, Have had osteoarthritis issues and tendonitis from lower thumbs to forearms that was likely caused by antibiotics (according to my primary care MD). Am praying that this disease has not travelled anywhere else in my body.

Thanks for the good advice, tips and "6 month planning". Very uplifting.
Posted 9/16/2013 6:08 AM (GMT 0)
Hi Nav,

Most likely your weight will NOT be an issue if you happen to choose da Vinci surgery. Losing as much as possible beforehand, of course, would not be a bad thing. But I don't think a bit of extra girth will stop them from agreeing to do surgery if this is your choice.

Also, there is quite a difference between Gleason 7 and the more aggressive 8, 9 and 10. Gleason 7 (whether it is 3+4 or 4+3) is still classified as an intermediate risk form of PC.

In addition, your PSA is actually very close to the high side of normal. They begin to suspect metastisization when the PSA is in double figures. So the chances are excellent that your scans will be normal and that the PC is still confined to the prostate.

In the Shop gave you great advice in getting info on all forms of treatment. Chances are that radiation could cure you the same as surgery.

While I am kind of a "surgery guy," I would advise that you consult with a top radiation oncologist AND a topflight uro/surgeon and get the pros & cons of ALL forms of treatment. Once you've acquired all the necessary information, you can sit back & decide which option makes you feel most confident & comfortable.

And keep your chin up!!! You are probably dealing with a very treatable form of PC. You will soon deal with it and then get back to living a very long life.

Hang in there!
Chuck :)

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, 9/9/13 PSA <0.1. PSA tests now annual.
Semi-firm erections now happening 14 months post-op & VERY slowly getting a bit stronger.
Posted 9/16/2013 8:41 AM (GMT 0)
Hi and sorry that you have had to join us
I was in your boots back in May of this year, except I was diagnosed G9, freaked out is one way of putting it, My thought train was totally taken over by PC, but I needed to learn about this beast, so to do that you need take stock of the situation, and as said above deciding which treatment to chose is the tough bit with lots of information out there.
With my limited knowlege I would say that you are very treatable, and with your PSA levels Im thinking your PC is still organ confined. All my scan told me was that both shoulders are stuffed, I didn't know whether to laugh or cry, thank goodness it hasn't spread! and what the hell else have they discovered!
So it will an emotional ride, educate yourself, select a great team around you, chin up, and the best of luck.
Posted 9/16/2013 9:25 AM (GMT 0)
Hey Nav0,

Welcome to HW. You've come to the right place.
Read a little and you will see that you are not the first one to go through this. Read some more and you will see that you are not in the worst of shape. Read a little more and you will see that any time of day or night if you need someone there is a guy who has either been through it or is in the same position as you, sitting at his keyboard willing to help.
i know it sounds trite but in the words of Douglas Adams: "Don't panic." You will get through this.
Good luck.
Jeff
Posted 9/16/2013 10:41 AM (GMT 0)
Hi Nav,

Sorry you are here, but glad that you found us.

I highly recommend reading the links in my signature for folks newly diagnosed with PCa.

Hang in there.

-Gedman
Posted 9/16/2013 10:45 AM (GMT 0)
nav0,
Take a few deep breaths, take your time, but do your research. Be your own advocate. Don't be sold on your first treatment option, there are many ways to kill this beast. This decision is up to you and you must live with your results, there are no do-overs. So when you make your decision, be at peace with it and go forward. Don't second guess yourself. Good luck with whatever you do choose.

Regards,
Kris
Posted 9/16/2013 10:54 AM (GMT 0)
Hello, Nav and welcome. Sorry you have to be here but I'm sure you will find this is a great place for help and support. In addition to the links that Gedman provided, may I also suggest you read the "sticky" thread at the top of our forum that is designed for newly diagnosed patients. www.healingwell.com/community/default.aspx?f=35&m=2652250

Your scans are unlikely to find anything given your PSA level. In fact many doctors wouldn't even bother with them - but some like to have a base line.

As others have said, at this point you should begin to educate yourself about our disease and to seek options. A couple of good books are Walsh's, Guide to Surviving Prostate Cancer" and Scholz', "Invasion of the Prostate Snatchers". You should also make sure you seek multiple options for your treatment from experienced surgeons and radiologists, including brachytherapists. Changes are very good that you have curable cancer but you will need to do the hard work yourself to make sure you make a good treatment choice. We are here to help you.

Jim
Posted 9/16/2013 3:53 PM (GMT 0)
Hoping for the best for you. Keep us posted.
Posted 9/16/2013 5:53 PM (GMT 0)
I really appreciate all the kind responses and good advice. Have done a lot of research and have been sorting through the options. I have even watched an entire RRP operation online. This is a tough cookie to crack, but I have a feeling it will be doable. I'd like to relate that weirdly this is possibly the very best forum I've ever taken part in because it truly deals with real life issues and heartfelt support from other sufferers and their caregivers. An oasis of compassion, hope information and support in what would otherwise (in its absence) be a desert of despair.
Posted 9/16/2013 5:58 PM (GMT 0)
Nav0,

Take your time making your decision. You only get one shot. Concider all your options and get the best surgeon and radiologist you can find. Interview them and take good note (and having someone along always helps a lot).

We probably all felt the shot to the gut feeling when we got the news.

Take a breath and enjoy your treatment free time. You are going to be okay. You can read what I went through by clicking on the link jn my signature.

Good luck to you.
Posted 9/16/2013 6:57 PM (GMT 0)
With your low PSA it is extremely remote that your PC has escaped beyond your prostate. AS everyone has said, talk to a surgeon, a radiologist and a brachytherapist before you make any decisions. Your risk is lower than one with a G8 or G9. these would be considered high risk and you are a low intermediate risk, with a high probability of cure.
Posted 9/16/2013 7:36 PM (GMT 0)
Navo,
Welcome aboard Healing Well. Comes as a rather shock to hear "You have cancer', but you are not alone any more. We have members from all over the world who have had many degrees of PCa and most of us are doing fine now. Learn all you can, make your choice of treatment and don't look back.

As far as surgery and girth, I had a man have is surgery the same day as I had mine and he was about 260 lbs and 5'7". I didn't want to take any chances so I worked out, watched my diet for 6 weeks and lost 15 lbs.

Good luck, come back often and ask any question you have, someone here will have the answer.

Bill from Florida cool
Posted 9/16/2013 7:54 PM (GMT 0)
Nav,
Keep a stiff upper lip. Four years ago, my stats were very similar to yours. Today, I rarely think about cancer....maybe twice a year when I get the psa test. There is quality life after a pc diagnosis.
God Bless.
Posted 9/16/2013 8:28 PM (GMT 0)
Unfortunately it's not enough to just talk to a single surgeon and a radiation oncologist -- each specializes in their own preferred treatment and will typically recommend that, forsaking all others. Your location, ability to travel for treatment, and insurance will also impact which doctors and treatments are available to you.

If you haven't gotten a second opinion on your biopsy, that's definitely a good idea. Upgrading or downgrading of your Gleason score may change your treatment options.

Surgeons will specialize in robotic, laparoscopic, or open, and they will also champion different techniques. Experience counts more than anything. Surgery is a great option if the most important thing to you is getting a post-op pathology report that gives you the assurance that it was contained and removed, although that is not the case 30% of the time.

In radiation, there's HDR brachy (temporary implants), LDR brachy (seeds), SBRT, proton, pencil-beam proton, and IGRT/IMRT. With a Gleason 4+3, pretreatment with hormone therapy may be beneficial for all but HDR brachy and SBRT.

HDR brachy and SBRT have the highest rates of sexual function preservation, typically around 75-80% and the lowest rates of urinary side effects. Surgery has about 40% sexual function preservation on average if nerve-sparing is possible, and about 10% of men will have lasting incontinence.
Posted 9/16/2013 8:38 PM (GMT 0)
Hello Nav, sorry you have to join our club. You have received a lot of information and recommendations. I just want to add my voice to support you and wish you well in deciding which treatment to choose. If you decide on DaVinci surgery make sure that your doctor has done several hundreds if not thousands. The doctors experience is very important. Good luck.
Posted 9/16/2013 9:13 PM (GMT 0)
Hello Nav,

Sorry you have to be here. I'm very new to HW so can't give much advice and so glad you've found us. Take it a day at a time and read....read....and learn all you can about PC.

Praying for you and your family. Keep us posted.

Dave in Bartlett, TN
Posted 9/16/2013 9:19 PM (GMT 0)
Hi Nav -

I'll join the others in welcoming you to the club no one wants to have to join - and by the way, flattery will get you everywhere with us.

Can't believe you have to wait a week for your bone scan - that's a drag - I got mine right away, but even the three days I had to wait was too much! It is unlikely with your numbers that you're looking at a spread - but I think it's good to have the scan to rule it out - much better to know. Try not to let your imagination run away with you while you're waiting - I know...good luck trying NOT to think about something...

I agree about getting a consult with both a surgeon and a radiation oncologist. However, in my highly biased opinion...as a G7, a consult with a medical oncologist is probably overkill if your cancer hasn't left the prostate. Still, if you're someone who needs to leave no stone unturned, it can't hurt - worst thing is you might get confused. Many might (and probably do) disagree with me on that one.

If you go the surgery route, I also agree that it is incredibly important to choose a surgeon with hundreds (if not 1000+) procedures under their belt. Don't worry about hurting someone's feelings - MUCH more important that you give yourself the best shot at a cure with the fewest side effects. Depending on what part of the country you're in, we may be able to give you some suggestions if you like.

And most of all...try to spend some time picturing the BEST possible results along with all of the doom and gloom thinking you're probably doing - after all, it is entirely possible that your outcome may be superb. Positive thinking helps.

Best of luck to you!

Doug
Posted 9/17/2013 12:17 AM (GMT 0)
Bienvenidos,

7 of 12 both sides, similar to my stats, except I had tumors in the Apex and PNI noted.

At my third consult, I had a CDU(color doppler ultrasound) that showed extra capsular extensions.

Even the surgeon at the 2nd consult admitted surgery followed by radiation would be the protocol. So I opted not to go the surgical route.

My point being, more research is needed, as you want to match the best treatment to your particular strain of this insidious nasty little creature
Posted 9/17/2013 5:50 AM (GMT 0)

All of your responses have brought me much solace and hope. Have been to an in-person support group (over thirty participants) where I was grilled and chided for "not bucking up"... These guys knew one another and I knew no one there. Basically, I was the "outsider" and it was their "clique", their territory. I was upset and full of anxiety & worry. I had not been sleeping well. I rattled off all these things I had researched on the net and it just seemed to raise the ire of the participants. They did not care to comment on what I had found. The discussion became a roast (of me) rather than a support situation. The psychologist in charge stated (within the 1st ten minutes-"Perhaps you are not a good fit for the group"... When he said that it took the wind right out of my sails, but in retrospect he was correct. I did not fit.

Within a couple of days you folks have welcomed me into your "club". I know no one wants "membership" in it, but I am grateful to be one of your newbies. I am feeling much more certain that I can get through this now. I know it won't be easy, but it may be more bearable than it would have been without the "club". A heartfelt thanks & a big hug to all of you !

Turning in now. Thanks to you folks I think I will actually get some sleep (and rest) tonight.

:-)  

James

Posted 9/17/2013 11:17 AM (GMT 0)
Welcome James.
Looking at your stats you have plenty of time to consider your treatment options. Now really is the time to learn everything you can about all the options and it will be very empowering once you feel able to make an informed decision.
Sending you a hug from ‘over the pond’.
Susan
x
Posted 9/17/2013 7:55 PM (GMT 0)
Hey nav welcome to this exclusive club!

I'll be 70 in Jan. Had open RP 10 days ago and doing fine. I was Gleason 9 at Dx in June after PSA elevated from 2.0 to 6.0 over two years. I had suffered with BP for over ten years so I thought that's what I had now but symptoms worsened (frequency, dribbling). I also had ED caused by finasteride and flomax which I was taking for BP, and I had low T which I was treating with androgel! So I had a few things masking the underlying issue of cancer.

You just have to deal with what you have and not second guess.

I was not a candidate for brachytherapy  due to pre-existing BP. I thought hard about IMRT but when I heard I also needed adjuvant hormone therapy, and that the process could take years, I said "no way"!   With a high Gleason score the risk of spreading is there and I firmly believe that open RP is best so they can get in and see and feel what you have. I was worried about losing ability to orgasm (albeit dry) so I wanted my doc to spare the nerves if he could, and finding no cancer in that area, he spared them. So after the pathology report came back,  I had cancer in the seminal vesicles, none in ten lymph nodes removed, and extra capsular extension (positive margin) of 4mm. with Gleason score 7.

My next step is adjuvant IMRT in 3-4 months.

With your stats, as everyone has said, your options are wide open it seems, and that makes it difficult for you. With GL 7 you are on the bubble. Be sure to get a second opinion on that. My initial was with Bostwick Labs which came up with 4+4=8, then Johns Hopkins (Epstein)which came up with 4+5= 9.

One thing I would say is 100% of the decision should be based on the quality of the practitioner and the institution, not the method chosen. I chose to travel to Johns Hopkins, the number 1 urology hospital  and have no regrets. They were awesome.

Good luck and stop worrying: you'll be fine!

Bob

 

Posted 9/17/2013 7:57 PM (GMT 0)
BTW, forgot to mention that if you go the surgery route, please get your BMI down first! It will make it easier for both you and the docs!
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