New to the Forum

JimB · Posted: Mon Mar 09, 2009 10:18 pm Post subject: New to the Forum

Hi all,

I've never joined a forum before but I have to say that I am really impressed with the stories and responses I have seen here. I was diagnosed with locally advanced prostate cancer approximately 4 years ago at age 49. I had a PSA of 11.53 and a gleason of 4+5. I did radiation and stayed on hormones for approx one year. After radiation and hormones, my PSA stayed level at around the .50 rate. Approx one year ago it started to increase at a "concerning" velocity. It went from .47 in Sep 07 to 1.23 in Feb 08. Then to 1.82 in May 08, 2.26 in Aug 08, 3.98 in Nov 08 and finally 5.81 in January 09. I had a PET bone scan in late November 08 along with a CT and MRI. They found one spot on the pelvic bone and one enlarged lymph node that was "worrisome for prostate cancer given my history." Right now I am planning to have another bone scan, CT and MRI later this month or early next month to determine course of action. Wish me luck.

Jim B

Hawk · Senior User Joined: 22 Nov 2006 Posts: 425

Good luck Jim! You are in our thoughts and prayers.

Time to look for a few trials and make sure you have a top shelf medical oncologist that specializes in prostate cancer.
_________________
History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

sophia · Posted: Wed Mar 11, 2009 2:56 am Post subject: Re: New to the Forum

JimB good luck with your tests. I wish you all the best.

I agree with Hawk. Waste no time, find a good oncologist that specializes in prostate cancer for there are tricks to keep prostate cancer under control that seems to me, based on my rule of thumb, that only a good oncologist can perform. My father wasted some time while being treated by an urologist.
I have some information on trials that are currently taking place so take a look at my recent post or contact me or even better ask your doctors about them.

Stay healthy, do not stress as possible as that can be, stay active and all will go well.
_________________
"I have been guilty of kicking myself in the teeth...
I will speak no more of my feelings within.."

Replicant · Moderator Joined: 01 Nov 2006 Posts: 860

Sorry to hear about the rising PSA. Hawk's advice is solid. Best wishes and please let us know how things go.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

wedwardes · New User Joined: 14 Apr 2009 Posts: 6 Location: London UK

My PSA had risen from 1.7 to 3.1 in 6 months and the rise concerned my Urologist so he organised a prostate biopsy.

I was diagnosed with Prostate Cancer and undergoing Da Vinci Robotic Prostatectomy next Monday 20th April in St Mary's Hospital, Paddington, London by Mr Vale.

My biopsy result showed 1 case of cancer out of 12 samples

My Gleason Score 4. My hospital only scores 3-5.

There is only 1 score not a sum because only 1 case of cancer was found.

Most of the other samples had Prostatic intra-epithelial neoplasia (PIN, or intraductal dysplasia) considered a precursor of invasive carcinoma

I was told

3/4 hours surgery
3/4 days in hospital.
Catheter 10 days

How long before I could take a 2 hour flight from London to Madrid?

I am pretty calm about it all but my wife is concerned.

Age 55
_________________
Warren Edwardes, London UK
Born 1953
PSA rose from 1.7 to 3.1 in 6 months
Gleason 4. One sample of 12 on biopsy had cancer. Others had pre-cancer.

Replicant · Moderator Joined: 01 Nov 2006 Posts: 860

Wedwardes,

I think that you have Gleason 8. (If you had Gleason 4, you wouldn't be undergoing surgery).

"If a tumour is comprised of only a single pattern it constitutes both constituents of the grade or score (e.g. 3+3=6)." Shappell, S.B., et al, in "Prostate Cancer", edited by Abel and Lalani (Imperial College Press, 2003, accessed via Google Books)

"Another slippery area involves small amounts of cancer limited to a specific area, with a single Gleason pattern. Different pathologists report this finding in different ways. Some may assign a total Gleason score, while others may note only a single pattern. Others may not score it at all." http://www.healthline.com/sw/hr-nl-understanding-your-prostate-pathology-report

I would strongly consider getting a second opinion on the biopsy. I believe Bostwick, a lab that specializes in prostate cancer, has an facility in London.

Before surgery, I would want to know that I really had Gleason 8 (or maybe less) and NOT Gleason 9 or 10. If I had Gleason 9 or 10, I would seriously consider not doing surgery, and going straight to radiation and hormones.

When would you be ready for a 2 hour flight? If at all possible, I would put it off until you're free of the catheter. To me it would seem like a huge uncomfortable hassle going through security, sitting in a cramped airplane seat, etc. You will have a urine collection bag strapped to your ankle, don't forget. If you can't wait that long, then you would probably be able to manage the flight within a few days of leaving the hospital, but it won't be fun.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

wedwardes · New User Joined: 14 Apr 2009 Posts: 6 Location: London UK

Thanks replicant.

A friend had been treated with Bracchytherapy. My urologist said because of my high Gleason this was not appropriate.

I really don't have the knowledge or expertise to decide between different treatments and it is a bit late now for further analysis.

One thing I picked up here and elsewhere is go to and stick with a surgeon with expertise and experience.

Thanks. I won't book any flights until I am feeling fit.

Interesting you say higher the Gleason move to radiation rather than surgery. I got the opposite view.
_________________
Warren Edwardes, London UK
Born 1953
PSA rose from 1.7 to 3.1 in 6 months
Gleason 4. One sample of 12 on biopsy had cancer. Others had pre-cancer.

Marathon Man · Posted: Wed Apr 15, 2009 2:39 pm Post subject: Re: I'm another newbie

[quote="wedwardes"]

I was told

3/4 hours surgery
3/4 days in hospital.
Catheter 10 days

How long before I could take a 2 hour flight from London to Madrid?

I am pretty calm about it all but my wife is concerned.

[/quote]

Hi Wedwardes,
I asked my surgeon more or less the same question last May. I had a full RP and was planning a holiday in the Algarve, flight from Cork, Ireland to Faro, Portugal - flight time 2.5 hours. The surgeon was adamant "No flights for 3 months!" Maybe the Da Vinci, being not as invasive as an RP, will enable you to travel sooner, but I doubt it. I understand that the risk is thrombosis. Your regular GP should be able to give sound advice too.

Regards,
MM
_________________
Marathon Man

PSA May 06, then 6 monthly; 4.3-4.9-6.8, Dx Feb 2008, PSA 9.4 @age 54 - Biopsy Gleason 4+3
RRP 22 May 2008 - Gleason 4+4, Tumour Vol 5%, T2a, N0M0, Negative Margins. Aug 08, PSA <0.01, Feb 09 <0.02, Sep 09 <0.02, Mar 10 <0.02

http://prostaterunner.blogspot.com/ Irregularly updated & months behind!

wedwardes · New User Joined: 14 Apr 2009 Posts: 6 Location: London UK

Thanks John.

Just had a look at your blog. Will go through it.

Wel I am up at 04:40 because I have got a very nasty cold and can hardly breathe.

So I have put my steam machine on and going to try and clear it.

I often get a chest infectoon after a cold.

Into hospital on Sunday 19th for the Robotic Prostatectomy on 20th.

I will have to phone the hospital as I hear that surgery is dangerous on patients with colds.
_________________
Warren Edwardes, London UK
Born 1953
PSA rose from 1.7 to 3.1 in 6 months
Gleason 4. One sample of 12 on biopsy had cancer. Others had pre-cancer.

wedwardes · New User Joined: 14 Apr 2009 Posts: 6 Location: London UK

The anaesthetist advised postponement. So the hospital is going to revert with a new date in 2 weeks or so.
_________________
Warren Edwardes, London UK
Born 1953
PSA rose from 1.7 to 3.1 in 6 months
Gleason 4. One sample of 12 on biopsy had cancer. Others had pre-cancer.

wedwardes · New User Joined: 14 Apr 2009 Posts: 6 Location: London UK

Update:

I was in hospital on 17 May ready to go for a robotic radical prostatectomy when I was woken up at 01:00 and asked if I had been shot in the chest.

err. no.

Apparently a button on my shirt when I had the chest Xray looked like a bullet.

Ok then go back to sleep.

Woken up at 02:00 on the day of the operation.

Have you just had a heart attack?

Who me?

Well the ECG pattern shows a change and it looks like you have had a heart attack and the anaesthetist does not want to take a risk.

So the operation was cancelled.

Now I am with the cardiologists having various tests and hopefully soon if all clear back to the urologists.

Just read about the sympathy for Phil Michelson because his wife has just been diagnosed with breast cancer.

I hope they can handle it.
_________________
Warren Edwardes, London UK
Born 1953
PSA rose from 1.7 to 3.1 in 6 months
Gleason 4. One sample of 12 on biopsy had cancer. Others had pre-cancer.

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