newly diagnsoed

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polfred
Regular Member


Date Joined Dec 2009
Total Posts : 62
   Posted 12/22/2009 9:00 PM (GMT -6)   
My husband was diagnosed with Prostate cancer a few days before Thanksgiving.  PSA-10, Gleason score 4+3=7 CT and Bone Scan Negative. We are scheduled to start radiation treatments in January. I would appreciate in advice anyone can offer.  I'm very new to this. My husband and I have only been married 5 years.  He was diagnosed with Parkinson's 3 years ago. Thanks

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 12/22/2009 9:07 PM (GMT -6)   
miltdav, I am so sorry that you guys are needing to be here. I am sure you will find the support that I have in the past year. I wish you the best for you husband in his treatments. You probably need to fill out a profile on him so that members will be able to address his specific needs. Do hot hesitate to ask questions.

Merry Christmas
Jeff T
Cajun Country
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 12/22/2009 9:11 PM (GMT -6)   
Hi miltdav,

Sorry you have to be here. You'll find lot's of good people here.

Can you post your husband's test results and other info in a bit more detail, like in the "signature" below my response?

Mike
-Nov/Dec 07, March 08 and Dec 08: Severe perineum pain . Septra/Bactrim for 8 months for diagnosed prostatitis.
-PSA start of 2008: 5.3..... PSA June of 2008: 7.3
-14 DRE all benign or nothing felt
-TRUS Biopsy Nov 08: 5 of 8 cores positive GS 3+3 or 6. 30-65%. Perineural invasion.
-General Health: pretty good, 5' 10", 180 lbs, slim.
-Open RP surgery: May 09 both nerve bundles spared. Bilateral lymph node dissection performed. Discharged 48 hours after surgery.
-Post Surgery Pathology: pT3a N0 MX, extraprostatic extension (EPE), stage III prostate cancer, lymph nodes clear, seminal vesicles clear, Gleason upraded to 3+4 GS 7. EPE within surgical margins. Other than prostate and EPE, all tissue removed negative for cancer involvement.
-Bladder control within 48 hours of catheter removal
-ED ongoing but improving significantly with Trimix at 7 months post-op. Oral ED meds didn't do much.


Geebra
Regular Member


Date Joined May 2009
Total Posts : 476
   Posted 12/22/2009 9:20 PM (GMT -6)   
Miltdav,

Welcome to Healing Well. You came to the best place on the Net to get your questions answered by non-doctors.

The docs define a high risk disease as Gleason 8 or more, PSA 20 or more, or clinical stage T3a or worse. None of those seam to apply in your husband's case. There is little other info that you shared to comment on. How old is your husband? Why is Parkinson important? Where do you live? What are the biopsy results? What kind of due diligence did you do? And so on.

Best of luck to you and your husband and once again welome.

polfred
Regular Member


Date Joined Dec 2009
Total Posts : 62
   Posted 12/22/2009 9:27 PM (GMT -6)   
Thank you for prompt response.
PSA 8 on-09-09
After treatment w/ Antibiotics for 1 month PSA 10
Liver biopsy done on 11-18-09
10 of 12 positive/ Gleason score 4+3=7
CT/Bone Scan negative
radiology oncologist and urologist suggested radiation and hormone therapy
Unsure of stage/ surgery not an option
markers placed on 12-09-09
Will start radiation treatments late January 2010

polfred
Regular Member


Date Joined Dec 2009
Total Posts : 62
   Posted 12/22/2009 9:30 PM (GMT -6)   
My husband is 58 years old

MrGimpy
Veteran Member


Date Joined Jul 2009
Total Posts : 504
   Posted 12/22/2009 9:54 PM (GMT -6)   
Welcome,

What other health issue does he have that you mention that surgery was not an option
Stats:
Age: 52
PSA (2008)=1.9
Biopsy on Jan 09, 2009
One (1) out of twelve (12) cores was positive, plus external nodule found
Gleason Score = 3+3
Surgery (Da Vinci, robotic prostatectomy): 4/7/09
Removed Catheter: 04/19/09
100% bladder control - Pad free 7/09
PSA 7/09 undetectable, under .0


polfred
Regular Member


Date Joined Dec 2009
Total Posts : 62
   Posted 12/23/2009 12:10 AM (GMT -6)   
Thank you.
The cancer has spread outside of the prostate gland. My husband also has Hepatitis C. Thanks again for your comments.
Have a Merry Christmas!

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/23/2009 12:18 AM (GMT -6)   
Welcome miltdav,

We are always sorry to welcome someone here, but glad you found us.

I am assuming the Parkinson's is the main reason that surgery was not a choice, and I am sure the Hep C is a factor too (my wife dealt with that for over a year long ago, total cure so far).

Are they going to add Hormone Treatments to his radiation or just straight radiation? Do you already know how many treatments he will be getting, how many grys, and what method, i.e. IMRT?

Please keep us posted, and you have our 100% support for both you and your husband.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA:
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 in place


Rolerbe
Regular Member


Date Joined Dec 2008
Total Posts : 235
   Posted 12/23/2009 12:25 AM (GMT -6)   
Miltdav,  Sorry to have you here.
 
All of various treatment options h have similar statistics, so your selected treatment option has equally good outcome chances, so you don't need to worry about that part.  Each treatment has different short and longer term concerns (e.g. incontinence, etc.).  Others here who chose similar treatments to your husband will be able to give you good input on these.  Best of luck.  Hope the treatments go smoothly.


51 YO
PSA at Dx: 8.2
DaVinci RALP: 10/31/08 -- Great MD in New Haven, CT
Negative margins, no extra-capsular involvement
One nerve spared
PSA at 0 for just over a year now.
 
 

Post Edited (Rolerbe) : 12/22/2009 10:28:09 PM (GMT-7)


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 12/23/2009 7:01 AM (GMT -6)   
Miltdav. I too am a wife of a PCa man. Did the CT scan show that the cancer had spread outside the prostate as mentioned in your last post? The clinical stage - that's the stage assigned at diagnosis - would be III if the spread has been confirmed but there are different levels of stage III (IIIA = extraprostectic extension, IIIB = seminal vesicle involvement, etc.) I don't know much about Parkinson's disease or hepatitis so can't address these.

Please come back and keep us posted.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (single small EPE in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV 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. Thank you God!


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 12/23/2009 7:26 AM (GMT -6)   
Jan,

I see you made it over here from the other site. As you can see this is a very active, supportive and extremely knowledgeable site.

You will find lots of answers to your questions here and very comforting support. Those are the things that we all need most when we are in the discovery phase after diagnosis.

Bless you and your husband. Have faith in success and try to look for the silver lining in every cloud that comes your way; as there may be many as you and your husband travel this journey together.

"Every Day is A Bonus", we just have to treat it that way.

Sonny
61 years old
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative
da Vinci 9/17/09
Post Surgery Pathology:
Gleason: Changed to (4+3) = 7
Stage: T3a
Tumor Volume 12.5%
NERVES SPARED-positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT scheduled to begin Nov 30,2009 (74 days post surgery)


polfred
Regular Member


Date Joined Dec 2009
Total Posts : 62
   Posted 12/23/2009 10:22 AM (GMT -6)   
Sonny,
Thank you so very much for referring me to this site. It has been so helpful. Bless you.I will keep you and your wife as well as the other members in my prayers. Have a Happy Holiday.

polfred
Regular Member


Date Joined Dec 2009
Total Posts : 62
   Posted 12/23/2009 10:30 AM (GMT -6)   
Sephie
I definitely will have a list of questions for the radiation oncologist at our next appointment. We were told that the CT and bone scans were negative. He stated that the cancer had spread only spread to the area outside of the prostate, but not to other organs, or in the lymph nodes. He did not mention what level the cancer was in other that the intermediate stage. I will keep you posted. Thank you for your comments. Have a Merry Christimas

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/23/2009 10:52 AM (GMT -6)   
Well, if it is outside the prostate itself, we can assume it is at least some degree of a Stage III situation. But even with that said,still lots of avenues of help and hope.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA:
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 in place


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 12/23/2009 12:27 PM (GMT -6)   
Welcome, we are sorry you are here but glad you found us.

If you feel a bit deluged by questions and requests for information it is because the people here are very committed learning about PC and understanding our options. If you look at the permanent links at the top of the topics list you will find links to many good sources of information, including several good books.
And of course we are here for any questions.

As others have said, with stats like your husband's, radiation has a very good success rate and many men tolerate it with only minor side effects. We extend our hopes to you and your husband in the new year.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day


polfred
Regular Member


Date Joined Dec 2009
Total Posts : 62
   Posted 1/4/2010 2:24 AM (GMT -6)   
turn Can you'll share with me what side effects you've had from radiation therapy? Thanks and bless you'll
jan

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/4/2010 8:38 AM (GMT -6)   
There is alot more to radiation(s), types, choices, dosemetrics, max. exposure levels, types of machinery and delivery and targeting...etc. Than most of us (including myself) even know about concerning radiations. They are not all the same, might end up with same results and may not...is also true. Not easy to comprehend the details and comparisons within all this, in case you were that interested, but it is worth considering the level of education you might want to get.

As for side effects some patients say literally had none...(maybe???)...commonly fatigue sets in during the sessions or right after and goes away after awhile. The skill of the radiation-onco is paramount, just like in surgery and seeds etc. Most likely you will do well with this, it is uncommon to have nasty effects as heavy as David (Purgatory) did herein. Myself had fatigue that went away, did not have urination problems or burning etc. (and I was found with total urinary blockage at diagnosis). I also had a rarer protocol of radiations and received the maximum 'safe level' and max. delivered type of ray you can find, which is Neutron the next in power is Proton and then Photon. Photon is very commonly available with IMRT machinery delivering such. The Proton machinery is huge, expensive and not to many places(maybe 8-10??). The Neutron machinery (Cyclotron) is the rarest, huge, expensive and probably a night mare for repairing and is at 2 or 3 places in the USA. I would say I did pretty well on this and do not regret doing this at all, doesn't mean I am telling you what to do. So if you have modern radiation equipment and a skilled doc this should be easier than you believe. Not true with older outdate machinery and less skilled docs, of course. Read about how this works and post radiations how you monitor your success, it is different than surgery parameter.

(the usual scans are not nearly definitive enough thus you cannot rely totally on them, the doc's cannot know for certain where PCa is in ones body, it can travel in micro amounts and show up much later..."contained to any area" is an opinion and not total fact) Example: combidex scan(Holland) or doppler color ultrasound scans have found PCa where the bone and ct scans did not, John T herein even did other scans that are possible in the USA...showing how they lack, reknown PCa oncologist Dr. Strum writes about such in his book- A Primer on Prostate Cancer (worth your time to read covers all treatments and patient histories included etc...)


Youth is wasted on the Young-(W.C. Fields)

Post Edited (zufus) : 1/4/2010 7:17:24 AM (GMT-7)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/4/2010 8:55 AM (GMT -6)   
While most men here that have underwent radiation treatment report few serious side effects, its important to know there can be exceptions. I just completed 39 sessions/72 gys of IMRT delivered by Tomalis hardware for the purpose of salvage radiation.

You should know that I was ultra sensitive to radiation in general ,based on a very enduring episode of radiation treatments I underwent 10 years ago. So my dr. knew I would have a harder time with this. Also ,due to other post surgery complications, I underwent my radiation wearing a Suprapubic Catheter in place the entire time. That's another unusual complication.

My treatments were 5 days a week, Monday - Friday, for 8 weeks, minus 1 day for Thanksgiving day.

I started feeling fatigue and burning and enflamed swollen feelings by the end of the first week. First couple of weeks, bothered by nausea, really bad at first, but that side effect seemed to pass away after then, only mild feelings from that point on.

By 2nd week, in the evenings, would be overcome by waves of deep bone felt faitgue. Only rest was able to help with that. I continued to have a lot of burning pain in the treated area, especially where the catheter tube exited my body. Towards the end, I would leave the clinic with severe bladder spasms (from the catheter) and a bruised burning feeling down the length of my penile shaft.

The dr. agreed that it was from "scattering", no matter how tight they direct the radiation, some scatters into surrounding area. The one side effect I didnt get was diarrea or burning while going #2. I was fortunate there.

For 2 weeks after the radiation ended, the pain described stayed the same and the fatigue was overwhelming at times. Mild pain meds and rest helped.

I am now a little over a month out of radiation. Much less pain, but some every day, still have fatigue, but not like when I was undergoing it. Seeing my radiation oncologist today for a checkup and see my first post radiation PSA.

Don't let my story scare you, but all procedures have rists, potential complications and side effects. For some men, they will say radiation was a piece of cake, for others, like me, it was a living nightmare for two months.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA:
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 in place


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 1/4/2010 9:33 AM (GMT -6)   
Jan,

David and I are on opposite sides of the same coin. As you can see David's journey through RAD was not a fun nor easy one by any means. I on the other side of the coin have just completed treatment #25 of virtually the same type as David and I have encountered almost no side effects. I have only 10 more to go.

My average time of treatment is about 15 minutes. It takes longer to drive there and back than the treatment itself.

I have a little more frequency in my trips to the john (although it may just be the great new coffee system I bought) and maybe a little tired in the afternoons (I always did appreciate a good pm nap), but nothing other than that.

As Zufus mentioned, there are many and varied forms of radiation treatments for PCa. And just as many various ways individuals react to it.

The primary concern at this point is to find a quality dr, that you have confidence in and a plan that addresses your husband and his complications as a whole and not just the PCa part of it.

As others have said there is a really good chance that RAD will take care of the PCa and it would appear that your husband has a leg up by having you as his partner in this journey. Many times many of us have said it very loudly, we could not have made this journey without our partners at our side.

Bless you and your husband,

Sonny
61 years old
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative
da Vinci 9/17/09
Post Surgery Pathology:
Gleason: Changed to (4+3) = 7
Stage: T3a
Tumor Volume 12.5%
NERVES SPARED-positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT scheduled to begin Nov 30,2009 (74 days post surgery)


polfred
Regular Member


Date Joined Dec 2009
Total Posts : 62
   Posted 1/4/2010 11:08 PM (GMT -6)   
turn Thank all of you for your responses. You'll have really been a blessing to me in this short period. I will continue to keep each of you and your families in my prayers. My husband and I live in Louisiana.  We went away for the weekend before we prepare to go through the treatments. I will keep you'll posted as things progress. Again, thank you from the bottom of my heart. Sonny, I so admire the strength and bond that you and your wife share.  I've attempted to get my husband involved with this new found family, but I don't think he's ready. Thanx! Thanx!

polfred
Regular Member


Date Joined Dec 2009
Total Posts : 62
   Posted 1/4/2010 11:12 PM (GMT -6)   
I forgot to ask. Has anyone with prostate cancer had any problems eating meat.  My husband does not have any interest in eating in type of meat other that luncheon meat.  I asked him if he had a problem with the texture, his response is always, I have problems chewing and swallowing it. We have an appointment with the doctor on the 18th. will keep you'll posted.

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 1/4/2010 11:17 PM (GMT -6)   
Jan, I am from Louisiana as well. Shoot me an e-mail. My address is open in my signature.

Jeff T
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.


polfred
Regular Member


Date Joined Dec 2009
Total Posts : 62
   Posted 1/4/2010 11:57 PM (GMT -6)   

Jeff T,

I new to this, what is your email address


Jim B
Regular Member


Date Joined Mar 2009
Total Posts : 45
   Posted 1/5/2010 12:48 AM (GMT -6)   
Jan,

I'm one of the guys who tolerated radiation treatment in a relatively easy fashion. During the last couple of weeks or so I was a little fatigued but that was about it. My treatment facility was right down the street from where I live and work so I didn't even need to miss any work. It did seem to me that I had to urinate much more frequently while going through the radiation (notice it has been over five years ago now so I may have suppressed some of this).I wish you husband good luck with his treatments and offer thanks to you for supporting him so well. We all look forward to talking to him when he is ready.

Jim B
Dx age 48 PSA 11.58
Biopsy Nov 04
4 of 6 specimens positive
gleason 4+5=9
Perineural invasion at two locations
40 radiation treatments Jan-Mar 05
PSA May 05 0.07
Aug 05 - 0.15; Feb 06- 0.92; Oct 06- 0.55; Sep 07-0.42; Mar 08-1.13 Aug 08-2.26
Nov 08-3.98; Jan 09-5.81; Mar 09-9.02
Bone scan in Nov 08- one spot in pelvic region 1.9cm with SUV of 11
Bone scan in Mar 09-two spots. Original now 2.5cm with SUV of 22 and 2nd spot less than 1cm with SUV of 7.8
Bone scan in Nov 09 - NO CHANGE WOO HOO!

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