Good news and bad news

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English Alf
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Date Joined Oct 2009
Total Posts : 2217
   Posted 3/18/2010 6:06 AM (GMT -6)   
The GOOD NEWS is that I'm going out with my wife and some very good friends at the weekend for a meal at a very good Indian restaurant.

The BAD NEWS is that this will probably be my last spicy meal for a while, as I am going to need radiation therapy and my urologist said that my bowels will react badly to spicy food for a while.

I went for my latest PSA results yesterday and I was up to 0.4 from 0.1 in November 2009. (I'm now about 8 months after surgery) He didn't do a proper calculation to work out my doubling time, but we both could see that it is about two months, which is not good either.

So I have an appointment with the radiological oncologist next Tuesday (I vote we call them "radiators" or something easier to type and say). This will be for what my sister - a nurse - described as the "complicated and uncomfortable" appointment, so I'm guessing it's about working out whereabouts inside me they are going to attack etc.

A bit of a shock, and I also noted that when the receptionist from uro phoned up radio to make my appointment she asked for it to be as soon as possible.
I'm not that surprised though, given I had seminal vesicle invasion and some tumour in the bladder neck. This is also the "Plan B" that the very first uro I saw told me would be used if surgery wasn't 100% successful.

I asked my uro yesterday if there was any way of telling if my PSA was being generated by one large clump of cells in the prostate bed or by several individual cells spread about all over the whole area and he said no. He said this much PSA would be being produced by tumour cells that would be too small to be detected on a scan, but if they waited till it was big enough to be detectable on a scan then it would be too far advanced to respond well to radiation.
The radiotherapy is thus almost be being used as a detection tool. If after radiotherapy the PSA drops then the conclusion will be that the tumour was in the area treated, if the PSA stays up then it would mean it was somewhere else, and we'd have to work on "Plan C".

The uro said that the "radiator" will also deal with the question of hormone therapy.

I go up and down to the hospital by train, so it looks like I'll become a radiation commuter during the coming months, and am very grateful to have read about those of you at HW who have been there before me, as it helps me appreciate that I'll get through it even if it may not be too pleasant at times.

Alfred
(On my computer my profile has been appearing in code so I hope I have been able to corrected it)

Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 3/18/2010 6:24 AM (GMT -6)   
Best wishes, Alfred

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/18/2010 6:57 AM (GMT -6)   
Alfred,

So sorry to hear the news. Definitely have some strong and quick recurrance going on, but more imporantly, sounds like you are get spot-on advice from your doctors. Now is the time for agressive salvage radiation, with or without HT if reccomended. How long a train trip each way? Trying to visualize that point.

Once they have that first visit with you, the rad. oncl (hows that for shorter) will work up the treatment plan for you, and you will know how my gys' they want to deliver over how many treatment periods.

Good luck, ahead brother, and let's hope this radiation can knock out the rest of the buggers from you.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, Caths #13 & #14 same time, 3/6 Cath #13 out - 4 days


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 3/18/2010 6:58 AM (GMT -6)   
Alfred:
sorry you had to go to plan B -
wishing you all the best -
hugs
BRONSON
.................
Age: 54 - gay - with spouse, Steve - 59
PSA: 04/2007- 1.68 - 08/2009 - 3.46 - 10/2009 - 3.86
Confirmation of Prostate Cancer: October 16, 2009 - 6 of 12 cancerous samples , Gleason 7 (4+3)
Doctor: Dr. Mohamed Elharram -Urologist / Surgeon - Peterborough Regional Health Centre
Radical Prostatectomy Operation: November 18, 2009 , home - November 21, 2009
Post Surgery Biopsy: pT3a- gleason 7 - extraprostatic extension - perineural invasion - prostate weight - 34.1gm -
ED Prescription: Jan 8/2010 - started daily 5mg cialis - girth back to normal -but not much length - will go for trimix in April when I see doc
Incontinence: 3-5 pads/1-2 clothes changes/day- finally seeing improvement - March 3, 2010 - week 14 after surgery -
location: Peteborough, Ontario, Canada
Post Surgery-PSA: to be announced - April 8, 2010
............


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 3/18/2010 7:19 AM (GMT -6)   
Alfred, so sorry to hear of your news...my heart dropped when I read your post. I believe that you will get through this just fine...

Keep us posted please.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 3/18/2010 8:17 AM (GMT -6)   
Alfred,
Enjoy that spicy meal to the hilt, but sorry to hear about the need for radiation. You will have a cheering section for you here at HW so please keep us posted as possible. Just finished my IMRT and it will be awhile until I find my normal again, but I am getting there, and you will to. I ate a lot of yogurt and whole wheat bagels the entire time, plus all the fruit I could find. No citrus fruit as that might increase the urination frequency. Best to you Alfred.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Starting IMRT on 1/18/10, Completed 39 tx at 72 gys on 3/12/10
Great family and friends
Michael


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7080
   Posted 3/18/2010 8:28 AM (GMT -6)   
Alfred,
You and I will be going down that road together. I'm just now trying to get an appt. to have the calypso markers put in, then have to wait two weeks for the start. Let the fun and games begin.

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 3/18/2010 8:55 AM (GMT -6)   
Darn guy. I sure hate to hear this news. Good luck with treatment.

Cajun jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1 pre cancer core
10/08 Nerve-Sparing open radical
Surgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clear

3 month: PSA <0.1
6 month: PSA <0.1
10 month:PSA <0.1
1 year: PSA <0.1
16 month:PSA <0.1

ED - Started Cialis at 3 months, tried all 3, 6 months added pump, 9 months Tried MUSE (YUCK) Bad experience.
1 year mark Found new Urologist visit was at 14th month post surgery
Started Injections, Caverject! (Success)
17 month: ED making improvements : Oral Meds gets me 85%


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 3/18/2010 9:43 AM (GMT -6)   
Alfred, not the news you wanted, but you already know what is ahead, as so many here have gone before you. Keep us close during your treatment..
James C. Age 62
Co-Moderator- Prostate Cancer Forum
Gonna Make Myself A Better Man: www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
32 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN

Post Edited (James C.) : 3/18/2010 8:55:15 AM (GMT-6)


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2217
   Posted 3/18/2010 9:50 AM (GMT -6)   
Michael. Interesting to note the yoghurt and bagels citrus fruit aspect. I like yogurts and breads, so that should be okay.

Sephie. Hey please pick your heart up (you need it undamaged). I'm feeling fine about this latest develpment - really!

142: does it have to be calypso? Can't I have a bit of Elgar?

David. The train journey is quick and simple. Even though The Hague to Amsterdam and back sounds like it ought to be similar to New York to Washington and back. There are two direct trains between the right two stations every hour.
Yesterday we left the house at 11.55. There is a tram/streetcar just round the corner from where we live and it's about ten minutes to the central train station.
We caught a train at 12.28. The train goes via Leiden and Amsterdam Schiphol Airport and arrived at 13.10 at the station in the suburbs of Amsterdam near the hospital.
There is a bus service direct from that station to the hospital that takes about three minutes, but it was warm and sunny yesterday so we walked and that only took about ten minutes. And I was seen by the uro at 13.36 even though my appointment was for 14.00.
We had cappucinos in the hospital cafe at 14.00 (one normal one decaff) then after using the bathroom walked back to the station past canals lined with crocuses to catch the 14.51 train home (The hospital is in a modern part of the city built in the 1970s an 80s, so don't imagine 16th century canals like Rembrandt etc.).
The return train was about 2 minutes late leaving but we got back to the Hague on time at 15.30. And we were home by 16.00. So a four hour round trip.
When I went to get my blood sample taken last week I left home at 12.55 and was back home exactly three hours later.
The total cost of the trip is about 21EUROS, but I've just bought a discount card that will make that cheaper in the future.


Now how about this:
My wife asked the uro if we were ever going to see any bills and he said: No.
He explained that the hospital and has a standing agreement with the company we are insured with that all treatments for prostate cancer at the hospital will be paid for by the insurance company so they hospital sends all the bills direct to them. (My wife may still telephone the administraor to find out what the costs are/were though)


Alfred

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7080
   Posted 3/18/2010 10:14 AM (GMT -6)   
Alfred,
The "calypso" is an implanted marker system to use with the radiation equipment. My urologist says no HT at this point (the Rad. Oncologist wants to use it, I don't, two against one).
Reading the "diary" of the train trip brings back memories - I used to work often in Amstelveen and took the train from the airport / around the area. Maybe again some day.

JB71
Regular Member


Date Joined Nov 2009
Total Posts : 206
   Posted 3/18/2010 10:34 AM (GMT -6)   
I'm not far behind either English Alf and 142. Starting IMRT on April 26 while still on Lupron.

Not to happy about that combination.

JB71.
Age, only 71.
 July 2009, PSA 9.1, free ratio 0.16
September GLEASON 4+4=8, T2A
Prostate 44cc.
 Calcium: 2.46  (range: 2.20 - 2.65 mmol/L)
25 Hydroxy Vitamin D: 102 (range: sufficiency:
76 - 250 nmol/L)
 Bone Scan: Negative
CT Scan scheduled for Dec. 1st. Negative.
 Started Casodex 50mg. on Nov. 6, first pill of 30.
Got Lupron 22.5mg ( 90 day ) on  November 19.
 No real side effects as of Dec. 15 except dry skin and hair but getting quite 'porky' in the belt area even though now I go to the gym, three times a week. Also I dont have a need to shave anymore so now I can save my 'shaving' allowance and direct it to my stash of Depends !
 
Christmas Day got my first hot flashes. Thanks Santa!
 
Open surgery done on Jan. 20th. by Dr. J. Chin at London's University Hospital.
 
Cath removel scheduled for Feb. 8th. Yes, I know,
that will be 19 days. Dr. is out of country until then.
====================================
Pathology Report:
 
Gleason Score: cannot be determined due to hormone therapy effects. ???????
 
Extraprostatic Extension:
present, left radial, multifocal
present, left basal, multifocal
 
Resection Margins:
Apical: involved by invasive carcinoma, multifocal
Bladder Neck: involved by invasive carcinoma, unifocal on left side.Other: non-tumoural prostatic present at resection margin.
 
Perineural Invasion: present.
Seminal Vesicle Invasion: absent
Lymphovascular Invasion: absent
Lymph Node Status: no malignancy in regional lymph nodes
 
Additional path. findings:
high grade prostatic intraepithelial neoplasia
 
Pathology Stage: yp T3a NO MX
==================================
Radialogist appointment was on Friday Feb. 26 with Dr. Glenn Bauman in London.
 Got another Lupron 90 day shot today and he wants to start IMRT soon. CT Scan plus measure scheduled in about 3 weeks. ( march 15)
 
First PSA test since surgery on March 25th.
 
Next appointment with the surgery Doc is April 13.
 
IMRT to start approx. April 26.
 
.


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2217
   Posted 3/18/2010 10:59 AM (GMT -6)   
A friend in England emailed me today after I'd told her about my latest news.
Her husband is my age and he also had to have salvage radiotherapy aftyer an RP two years ago follwed by rising PSA.
She says he had hormone therapy before and during radiotherapy and has now been <0.1 for over a year, but that the side-effects of hormone therapy were quite tough for a while.

(And I'm already developing a "tummy" since the da Vinci.)

PCa Calypso:

"You wake all night and you pee all day
HW brothers are the ones who know.
Hey Mr Oncologist make me get better
Radiation come and da PSA go!"


Alfred

Ricky2
Regular Member


Date Joined Dec 2009
Total Posts : 97
   Posted 3/18/2010 11:04 AM (GMT -6)   
Best of luck Alfred! My prayers are with you.

Ricky2
Age 70

PSA 5/2008- 3.6, PSA 7/2009- 6.1, retested 9/2009-5.1.
Biopsy 9/2009. 4 of 12 positive. Gleason 3+4=7
CT and bone scan negative.
Robotic De Vince Surgery 10/29/2009. 1 night in hospital. No pain. Cath out on 11/6
Pathology Report: Gleason score 3+4. Margins slightly involved <.1mm to .25mm. Perineural invasion present, stage pT2c. Tumor 18%. Seminal Vesicle - absent, Lymph Nodes 0 of 6.
Continence- first 4 weeks after cath out Dry at night, rest of time, bladder held nothing. 6-7 pads per day. as of 12/30 no pads most of time. almost dry except for a few drips. I keep doing Kegels.
ED. Started VED on 12/17/2009. Every other day for 15 min. Cialis .20 mm twice a week
PSA 02/08/2010 <.1
02/22/10 Trimex injection .2ml less than 50% just a little discomfort.


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 3/18/2010 4:53 PM (GMT -6)   
Alfred,

Truly not the best news of the day, but with your attitude, it will certainly make it easier for you. Besides,you really meet some nice people on the train. Maybe you should start a blog about radiatior commuter experiences.

Best of luck, and keep a stiff upper lip eh ?
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01


bcc
Regular Member


Date Joined Oct 2009
Total Posts : 46
   Posted 3/18/2010 5:16 PM (GMT -6)   
hi e/a sorry to hear your news but think about the power of positive thought ..think good. think you are free of this and buy lance amstronges book [its not about a bike].this guy had it all over the place but thought he could beat it and did .ok you cant cycle like him but you can think as positive as him.god bless, hope all .goes well, barry from brighton
PSA Aug 07 was 3, Mid 08, 3.5, mid 09, 7.27

First biopsy july 09 - t2a on left . 11 samples taken from 6 blocks. 4 blocks show positive for adenocarcinoma. 1 block 10%, 3 blocks 5%, overall gleason 3 plus 4. No perineural invasion seen. Seminal vesicles clear.

End Oct 2009, bone scan all clear, MRI shows 6mm lesion on bottom left and rest of gland diffused image. Late Nov 2009, a template biopsy of 32 from 20 sites adenocarcinoma, gleason 3 plus 4 at 10 sites; unfortunately spread over both left and right.had planned hifu treatment but spread of cancer reduced possible benefits.robotic radical undertaken by prof r kirby at the london clinic 16/2/10 in hospital 3 days .cath out 25/2/10.pathlab report -margins clear,gleason now 4/3 .tumor weight 62g tumor vol 1.7. stage now pt3a as carcinom invaded left posterior aspect 2mm .dry at night from when cath out ,completely dry from 2 weeks first post op psa due 1/4/10.


Red Nighthawk
Regular Member


Date Joined Oct 2009
Total Posts : 289
   Posted 3/18/2010 6:28 PM (GMT -6)   
Alfred, better now than in five years. At least they'll know pretty much where to attack this demon.

You will come out of this Ok. Try to stay positive and put it all in God's hands.
Age: 62
Pre-op PSA: 4.1
Post-op pathology:
Gleason grade: 3+4=7, present in both lobes, at least 1.1 cm, and occupying less than 5% of prostate by volume. pT2c NX MX
No lymphatic/vascular invasion present.
Seminal vesicles and extraprostatic soft tissue free of tumor.
Inked margins are free of tumor.
High grade prostatic intraepithelial neoplasia is present
Robotic RP: Sept. 15th, 2009 1 day in hospital, cath out on 9th day
Post-op PSA: at 4 weeks ---> .04
three months -> .03 (the trend is my friend!)
ED: Improvement is very slow but there are positive signs. Doc has NOT put me on ED drugs yet.
One pad/day for the first six weeks. Two pairs of underpants now just to play it safe.
Surgery: Dr. Jim Hu. Brigham & Women's Hospital, Boston


cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 3/18/2010 6:51 PM (GMT -6)   
English Alf,

You have a cheering section right here in Bradenton Florida. I know that's tough news but you'll get through it as have so many on HW before you.

Best wishes,

Steve
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