Strange experience (+ 6 month update)

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creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 10/12/2007 5:28 PM (GMT -7)   

Hi Everyone,

 

We had a strange experience this week (nearly 6 months post op) so I thought I would share it to ensure that "it is not just me" (who considers this weird and unexplainable!!). Sorry if this is long-winded!  yeah  

 

My husband went to the GP (family doctor) last week, for PSA, general checks - you all know the sorts of overall men's health tests – and then was then REFUSED a script for Levitra 20mg, from the GP, and came home without it. He saw a men’s health specialist about 3 months ago (different doctor), for confirmation of what we were doing ED recovery-wise,  and all went relatively well, so we had an informed plan and we were not expecting any resistance not based on anything. He (CJ) had had a break of about 4 weeks and was now wanting to try another regime of meds. We have researched this as well as we could,  for many months. There was no written communication between family doctor and men’s health doctor as we self referred on specialist’s advice after 3 months earlier.  

 

Anyway, I was flabbergasted with this recent  “non-action” by our family doctor (GP) for just a script,  as she was the one who referred and initially diagnosed my husband. She received the reports and referrals from his Pca. (He was diagnosed on his 49 birthday last year). She referred him for biopsy and phoned him at home twice last year when he was pre-diagnosis, as she knew he tended to procrastinate at times, and she wanted him to see a urologist immediately. She had been previously co-operative in prescribing the ED meds to now. No reason, just said it would not work. My husband, who went alone to this family doctor, did not seem to come back with any explanation at all, but just a sense of depression, so I guessed she had disillusioned him in some way re his recovery.

 

I tried to not panic but felt angry at the fact that the GP seemed to know less about the experience of prostate cancer recovery than we do. I asked my husband (who is much quieter and calmer than myself), if this time, I could advocate solely on his behalf as he did not want to do anything to challenge this himself!

 

He said “yes”, so while he went out fishing on Thursday, I emailed our Surgeon's nurse with a description of the problem and what I saw as the reasons, and the fact that this needed urgent medical assessment and some education to our GP one way or the other.  She (nurse) showed the Surgeon the email within 2 hours, who advised that he would send a prescription to take us through the next 6 months in our own time, and confirmed our personal plan with a good piece of additional information.  It (Leitra script) is now on its way to us by mail, so problem resolved in the exchange of 3 emails. Hubby is now happy and we continue on our own ED recovery plan – it was actually a bonus to have some contact with the Surgeon for reassurance at this time (in an indirect way!). I should be over it as it is now resolved, but I still reckon it is weird, and not acceptable really… my husband is intending to resume 20mg each second day for 3 months.

 

As I said, our GP has been with us for 15 years and I am due for my annual female health check too now. I do not want to argue or explain any of our decisions, so am actually thinking of missing my appointment (!! - this is a most irrational choice), or finding a new doctor after 15 years!  I hate conflict, but am still a little uneasy. I cannot imagine how or why a doctor (GP) we know well would, after caring for my husband, refuse to support him in his ED recovery now?  Anyway, friends... any reflections on this would be appreciated just for a little perspective. I could of course mind my own business, but it is out of the question here!

 

I will probably have to say something and advise her that he is taking the medication anyway (or he will have to – for health reasons if nothing else). Anyway, that’s the weird experience. Not a  life-threatening one in anyway, but I still find it a little perplexing which is why I thought I would share it. I realize it does not compare with important issues which are posted here, so hope this rather trivial posting does not offend anyone!

 

Consider it one of those “vents”_ I do not have many!

 

OUR 6 MONTH UPDATE (Oct, 2007) follows: My husband, CJ IS 49.8 years old, 6 months post open Sx, no continence issues, previous PSA June was 0.01.  

Overall, we are well after 6 months. My husband feels 85% back to his previous self (overall estimate he says). He has the referral for a PSA check and will have his 6 month PSA test down at the local pathology clinic,  in a few days. That is a LITTLE frightening. However, he had complete containment in April, and an excellent post op report thankfully to now, so we remain hopeful of 0 (zero) PSA’s in future.

 

I am about to enroll in a Part-Time Doctorate of Nursing (also known as a Professional Doctorate). These degrees are relatively new here in Australia, but I understand pretty well established in the US Nursing Faculties. I am looking forward to the challenge, although it will take several years to complete! Thus, next year there will be 3 out of 4 members of the family still at “school” so to speak (adult daughter is at Uni, 7 year old son in primary school). We must be a little mad, overall – the dogs, cat, bird, fish and hens we share our yard with agree, but we have survived prostate cancer, so I am starting a garden of colour to celebrate this as we move into the warmer weather, and moving on with my career. Why not? We have been very lucky. And it does not matter if all of us fail our respective schooling courses!!!! We have our husband and father back healthy; nothing at all to loose, and a whole life to continue now. So I am now actually happy for the first time in 10 months aside from being happy at the outcome of my husband's tests etc. There is a lengthy and arduous application process which I am currently struggling with, so fingers crossed that they will take me on next year as a student.

 

We continuing renovating our old house (CJ’s current full-time interest), and when finished hopefully CJ will resume his own business of restoring old cars. There is now a new cubby house out the back – we have become a popular house with 7-10 year old boys in the neighbourhood.

 

Anyway, it is always good seeking advice here. Thank you for reading our update and current (minor) concerns. Overall, we remain blessed and safe, which is what we also wish for you all, in all stages of recovery and living. We continue to pray for those experiencing incontinence, which was something we did not have to deal with thankfully, and understand the pain and shock of the newly diagnosed and treated. Therefore, if it is OK, we will continue to contribute here and there. I still keep a diary and in time may contibute further in terms of the ED recovery, however for the moment no different to most,  just not taking the injection path yet as CJ does not want to at this stage.  

 

Kind regards, Lana (forum member for 10 months)

 

PS I will update our signature after the next PSA. I am hoping CJ will go on Monday for the PSA and will let you know as it will be his 2nd test. It is now Saturday morning. I warned you this was long-winded!!

 


Creed_three
Lana posting for husband CJ (49 years). First PSA 3.5 (Nov 06). Open Radical Prostatectomy on Tuesday 17th April 2007. Gleeson 3 + 4 = 7. Confined to prostate. PSA 0.01 (June 07).


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 10/12/2007 5:38 PM (GMT -7)   
Lana ~ don't you even think about deleting any part of this post!!! I know you... you'll re-read it and think to yourself that it's too long! It isn't.... It is a wonderful insightful posting and one that is well worth sharing.. I'll be back.. Hugs to you dear friend... xoxo Lee & Buddy

mama bluebird - Lee & Buddy… from North Carolina

 

v          We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

3rd PSA 08-07-2007 Less than 0.1 Non-Detectable :)


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 10/12/2007 7:21 PM (GMT -7)   
Hi Lana and CJ,

Great update! Thank you for filling us in on CJ's and your progress.

Doctors just don't get it when it comes to ED recovery. They probably never experienced it and apparently the education they recieve isn't very good. The only other explanation is that they just don't care, which I doubt.

My first uro's PA was the ED guy in the office. He made a joke out of our dilemna. On the day he took the catheter out he told us to go have sex 4 times in the next week. He gave us some pamphlets on ED and that was it. In the next few months I changed uros (not an ED problem) and told my new uro that I wanted to try penile injections. He showed me how to inject and told me to take .1 ml of Trimix which he prescribed. I did and had a 5 1/2 hour erection with lots of pain. I have since experimented with smaller doses and now have no problem with it. Also, I think that not being in action for an extended period of time makes the erections more painful. After several experiences I no longer have any pain and things are almost like pre PCa.

The point is that in my experience and that of others here on the forum, you are pretty much on your own with ED recovery. The most valuable information is right here. You get the first hand accounts of our successes and failures in this area.

I too had a problem with our family doctor after being in the urologist's care. He was afraid to prescribe anything that had anything to do with the uro's area. He called it "standard of care". They are so concerned with practicing medicine that they forget about the patient.

So I think that doctors have their place and can do great things for us. But we have to take charge of our recovery and make the decisions based on what is best for us. Everything from diagnosis to treatment options to ED recovery is in our hands. They work for us.

Anyway Lana, I hope you keep us up to date with your progress. Take care...

Jim


Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2C. Gleason 3+4. Cancer confined to prostate.
PSAs from  1/3/07 - 7/18/07 0.00. 
T level on 4/2/07 - 48     On 7/16/07 - 613
Started Tri-Mix on 8/7/07.  .02 ml and 50 mg Viagra.  It works!!!
Next PSA and T tests on 10/17/07
 
"Patience is essential, attitude is everything."
 


M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 10/12/2007 7:49 PM (GMT -7)   
Lana, thank you for sharing your experience. yes, it's really weird! who knows what the reason is your doctor did not want to prescribe ED drugs for CJ. if you like this doctor except for this experience, you might want to call him/her and find out why. but then I don't even know if they'll discuss this with you because of privacy act laws. I'm sure CJs PSA test will be a big fat ZERO!! take care, kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test <0.1, 2nd post-surgery PSA test <0.1, 3rd PSA <0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06
3/07 - occasional dribbles and erections with Cialis and pump
8/07 - 1 yr PSA <0.1
9/1/07 - achieved erection with Viagra - no pump!


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 10/12/2007 9:08 PM (GMT -7)   
Hi Lee, Jim and Kat,
 
Lovely to hear from you all. I am not editing you can see! I was wondering Lee if you could remind us all of the instuctions for activating the healing-well email? I have looked for the previous instructions and cannot seem to find how to do it although it seemed easy.
 
Also, once activated, if we change our email address how does this affect the subscription (or re-subcription activation) to the forum?
 
I am currently paying a heap for a service provider I am about to change to another one, and unfortunately this means my only personal email address will change too. In the meantime however, how can I activate my email as you instructed when you took the position of moderator?
 
Thanks for your words of encouragement. I am listening to Elton John and doing my housework today, thinking of you all. Now, I have actually opened a can of  "Bundy & Coke" which I believe you do not have there in the USA, but it is actually rum (very diluted). If you DO have it there (from Bundaberg, QLD) it is very nice drop. CJ is back out on the boat today (He also rennovates old boats!)..Like many people who are close, we actually enjoy time apart if that makes sense, so back to my bundy and Elton's harmonies!  
 
Thanks for your instructions re activating the email for other members Lee when you have a chance to reply.
 
cheers xx Lana
Creed_three
Lana posting for husband CJ (49 years). First PSA 3.5 (Nov 06). Open Radical Prostatectomy on Tuesday 17th April 2007. Gleeson 3 + 4 = 7. Confined to prostate. PSA 0.01 (June 07).


GreenAcres
Regular Member


Date Joined Jul 2006
Total Posts : 474
   Posted 10/13/2007 6:44 AM (GMT -7)   
Lana - so wonderful to hear all your news. The scrip refusal is an odd one, for sure. We've had our local doc say "it's all in your head," but he still didn't refuse to do it. I, too, would want to know exactly why.

Sounds like you're heading in wonderful directions! And well deserved after the last few months. Please keep posting - maybe even after a few more bundy & Cokes. I'll join you.
Husband age 66
PSA on 5/1/06: 4.2 (had doubled in 13 mos. and rising monthly)
DaVinci Surgery 8/2/06 - Austin, TX w/Dr. Randy F.A.G.I.N.
T2a (at biopsy)
At pathology - cancer cell leakage into fatty tissue
Post-Surgical PSA on 10/06, 4/07 - undetectable!
Update: 11/1/06 - perhaps bladder neck involvement; 30%-50% chance of recurrence
Future: PSA tests twice-yearly for now - Next one: 10/16/07
 


puget
Regular Member


Date Joined Mar 2007
Total Posts : 237
   Posted 10/13/2007 9:26 AM (GMT -7)   
Lana -- I just shake my head when I hear stories like yours. You'd think in this day and age, ALL family drs would be up to date on ED problems generally and post-PCa surgery specifically. How could she say "It won't work"? You're husband's only 49 and the drugs sure seem to work for guys well into their 70s. Jeesh . . .

I'd find a new gp. If she's as clueless on this issue, one has to wonder about other issues. Hang in there, and stay in touch!
Puget
60 years old
Dx March 2007
Pre-Surgery Gleason 3+3 = 6
Clinical Stage: T1c
Biopsy: 1 in 10 positive
Da Vinci: June 7, 2007 
Post-Surgery Gleason 3+3 = 6
   Clear at margins
First Post-PSA Sept 07 = <.01 (Hooray!!)


Pete42
Regular Member


Date Joined Mar 2007
Total Posts : 114
   Posted 10/13/2007 9:53 AM (GMT -7)   
Agree Lana- time for a new doc. If you have been reading my posts you will see that I am in the same boat (so to speak) as CJ in terms of the ed issue. My wife and I decided to be very pro-active about this issue. The pump was cumbersome and annoying for me, the oral meds didnt seem to work. The injections do, still in the process of finding just the right dose but the progress is clear. As relatively young men, whether we know it or not, the ed thing has a big effect on our self-esteem and probably effects our daily lives more than we want to admit. My suggestion is to find a doc who will work with you and CJ on this, you'll be gald you did.

Diagnosed 1/26/07
Stage Tc1
Gleason 6
PSA 3.8
12 samples, positive in one 15%
Biopsy - 1% involvement, no bladder neck, Gleason 3+3, Tc1
Age 51
Surgery (robotic) May 4 2007 City of Hope
Final pathology - fully contained to prostate, TC1, Gleason 3+ 3
Fully continent one month
First Post op PSA - Undetectable
Second Post Op PSA (8/22/07)- Undetectable
Still no luck with ED start injections 10/06/07
 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 10/13/2007 6:50 PM (GMT -7)   

  tongue     Communicating with members via.... HW web-based e-mail **

 

Hi ~ Lana,

 

We have used the healingwell.net e-mail for the past 4 months and it has worked well.  Making contact with forum members and members making contact with us.  I did not wish to use our personal e-mail so this was a wonderful alternative. 

 

It does not impact your HealingWell Forum or Chat Room sign-in at all…  It is its own entity.  Located on the yellow line above.

 

Once you sign-up… don’t forget to go into the Control Panel and edit your e-mail address and click on the radio button to “show e-mail address”.  The envelope will show color and you will then be activated for “members only” to see your profile.

 

J Hope this helps!!!  In Friendship ~ Lee & Buddy


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 10/15/2007 5:16 PM (GMT -7)   
tongue  Hi ~ Lana,
 

Trivial posting??  Definitely not!!!  This is a real concern that many will face and the more open we are with it the more “knowledge” we can share with each other as to how to deal with it.  I guess my first reaction is… If the relationship with your GP over the past 15 years has been a good one ~ which you’ve state it has been… then why not “educate” her to the “mental state that our guys and gals are in ~ in fighting this disease.  There are 3 “mountains” we have to get over.  This doesn’t have to be a confrontational meeting at all.  Point blank ask her.  Why would she take your hands so caringly ~ helping you to traverse the slippery stepping-stones that this disease places before us…  and then to make a judgment to just let go ¾ of the way through the high water…. as she stands back and watches you struggle… to reach solid ground?  It truly doesn’t make since does it?  Go for it!!! You may well educate her…. And in the long run help someone who doesn’t have your “strength”…

 

It is so heartening to hear the excitement in your voice.  The past 10 months have forever changed us in such powerful ways.  The flowers are brighter, the smells are richer, and life is more precious than we ever thought it could be.  And yes ~ it’s time to move forward in our “new norm”.  I’m excited for you and your new adventures into the Doctorate of Nursing program ~ my fingers, toes, and eyes… str vtpddrf  (oops translation “are crossed”…better un-cross the eyes so I can type)  Good for you!!!!  Get that application in and enjoy each and every moment as “you” move forward.  Thank you so much for sharing this with all of us.  I know you’re very private ~ so it means even more to us that you would share this.

 

Partial quote from above posting by Lana…if it is OK, we will continue to contribute here and there…  Staying close is important ~ for all of us.  Even when we get back to our regular routines… dropping by to say hi! and a little update is “so important and appreciated”….

 

We’ve kept you guys tucked very close over the past 10 months and I’m sure the Kookaburras won’t mind an Eastern Bluebird continuing to hover close by…  tongue

http://i206.photobucket.com/albums/bb179/mamabluebird1955/mamabluebird.jpg                      

 

Take care of you and yours... and enjoy the beautiful “gardens”.. filled with love. 

Along the way ~ Take time to smell the flowers… 

Take some time to do whatever makes a happy you!

 

Give CJ, your daughter, and your little guy....big hugs from all of us!!!  Your family has traveled this path well and you are all stronger from it…  It’s time to move on….  Gentle Hugs filled with special warmth coming to "YOU"!!!  Our thoughts and prayers will remain close as well… and we will be right here waiting for updates… 

 

In Friendship ~ Lee & Buddy


mama bluebird - Lee & Buddy… from North Carolina

 

v          We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

3rd PSA 08-07-2007 Less than 0.1 Non-Detectable :)


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 10/16/2007 1:06 PM (GMT -7)   
Hi Bluebird, 
 
Thank you so much for your interest and thoughts. Please don't think I am going anywhere however (!!) :-) . Moving forward or "moving on" for me at least, will not involve loosing contact here..It is too important for us!
 
CJ has had the blood taken (PSA) now, and I also insisted he have his testosterone checked (thanks to this forum - Biker and friends). We are both quite depressed now (seems delayed??) - comparative to our usual selves and moods,  but really we have not that much reason to be depressed now - For example, I am usually quite within my correct weight for height (size 10/12) and have now gained 11 kg (sorry not sure what that is in pounds) since April!!! Can you believe that?? I actually can, as it has almost been a steady process of finding comfort in food of all kinds for me! This is NOT good, but more a reflection of a hard journey. We do not share it with anyone else outside of this forum and the support groups just did not work for us. However the fallout seems to be our current moods. Unfortunately CJ followed right through with the weight gain too,  and has gained the weight he lost prior to surgery. We are as bad as each other more so now in middle age!!  Anyway, we have re-joined the gym, but have not been yet...fortunately both children remain active & healthy, and have not gained any weight at all, unlike us...!
 
Anyway, part of my improvement program is a mind/body one so tackling it on a few fronts. I just want to rule out testosterone as a cause of CJ's ? depression. It is not serious for either of us, just something to be corrected, so we will certainly remain in touch here. I have learnt in the last 10 months that it is not good for me to read everything here,  but I do get a lot of help and support still from this site, and read most of the postings each day.  
 
Thank you to you and Idaho for the excellent moderation of the board. It makes such a huge difference, and has a great balance of support (when needed) and information (always).
 
Anyway, just a message Lee, that we are not going anywhere!  I am just careful of what I write to others as the side effects of prostate cancer recovery are pretty new for us still. I find it hard sharing my emotions, but greatly appreciate the support of other wives and those who share their experience here. Our ED recovery plan is going quite well believe it or not - there are very promising signs of a natural recovery much the same as our Surgeon predicted, so I will take your advice about a quiet education session with our GP as a start.  It is still a very hard road to negotiate nevertheless.
 
Love to you Bluebird as the Kookaburras laugh loudly at the moment! (Along with a few "Bell Birds"- ie. birds which sound exactly like a bell chime). I will post again with the PSA - a few days I guess. cheers,
 
 
Creed_three
Lana posting for husband CJ (49 years). First PSA 3.5 (Nov 06). Open Radical Prostatectomy on Tuesday 17th April 2007. Gleeson 3 + 4 = 7. Confined to prostate. PSA 0.01 (June 07).


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 10/16/2007 2:21 PM (GMT -7)   
Ms. Lana,

Thanks for the postings.  They hit all the bases.
During my recovery from RP surgery, I missed an entire spring of gardening.
Good luck with yours!

I sort of feel sorry for your G.P......
In my line of work, I often get to "train my boss" on some topic.
I can appreciate your hesitancy to make your next appointment! :-)
Between your education and personal research on this topic ....
  - she should hire you as a consultant!
As she changed her mind (some won't) when you made your position clear,
I feel certain you can find a way to get past her reflexive response
  - and how she was oblivious to this male patient on a male topic....
  and continue your relationship - if you choose.
Still, an E.D. specialist might be a better choice on this topic!

Thank you for all of your input here.
Your perspective from Down Under is invaluable -
  - and always so insightful and kind.

Your friend,

CCedar
ICTHUS!

creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 10/16/2007 3:19 PM (GMT -7)   
Cedar - You are a classic and you have made me laugh - thank you!!
Creed_three
Lana posting for husband CJ (49 years). First PSA 3.5 (Nov 06). Open Radical Prostatectomy on Tuesday 17th April 2007. Gleeson 3 + 4 = 7. Confined to prostate. PSA 0.01 (June 07).


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 10/17/2007 8:09 PM (GMT -7)   
Hi Everyone,
 
Hope this below is helpful to some.... an update on the issues generally to 6 months:
 

This (below) was written on 12th Sept (4 weeks ago), but I never quite had the courage to post it. However if it helps others, this account is of ED recovery after (radical/small vertical incision) open surgery, described at the time as “nerve-sparing micro-surgery”.  We chose this treatment over other options due to husband’s age, the Gleeson 7 identified at biopsy, and Surgeon’s reputation and consultation. We could have chosen other treatment, including robotic surgery, however we chose the above. Biggest concern in choosing options apart from recovery, was potential for ED. I worried about this more than my husband.

 

My husband had full potency prior to surgery, and I fully expected it would return quickly after surgery. He had strong pelvic floor muscles.

 

After 5 or nearly 6 months now, with the help of others on this forum, it IS slowly returning, or seems to be….  However we have only had actual sex three (3) times (about 65% - although he says 50% - and a little difficult to maintain, but did it!!).  As some would say, ä “usable” function occurred at these times. However three times seems to be quite incredible in 6 months without a pump or injections . This was once with an ED drug and twice without (recently).  The issues we were well prepared for and we anticipated that any depression had to be actively fought, so we have fought mild depression in various ways together, simply by acknowledging it to each other.

'

Initially, these ED meds (cialis, levitra) did not actually seem to be working for my husband (who has a large frame) early on, however the manual rehabilitation, lots of rest, no stress, take as it comes, celebrate each victory, and no jokes about it between us (that’s important to me – not something I consider funny), has worked somewhat. As others have reported, there are now encouraging signs at 6 months, and there have been previously.  Just slow at times, and we did not recognize the improvement slowly.  We have been told repeatedly it is a slow process, and now there are signs and they are good. It has been somewhat difficult however I think it has all been emotional ups and downs rather than physical ones. Husband is starting back on the ED meds again now to see if any further improvement, and since there has been some improvement without meds in the last few weeks, that is why we have had a break and now starting another regime. My main quote these days to him is “Its all about blood flow!” Not too romantic, but this may come later when I get the new nightwear!

 

This is simply a wife's perspective; My husband had no continence issues, so his ED recovery does not seem to be correlated with this. Overall, his ED progress is similar to other men here. However, I can see now see how it could improve over 6 – 18 months in the future as well from the current 50-65% usability so to speak… . The choices we have made to manage it have simply been personally ours after researching the possibilities.

 

With nerve sparing therefore, recovery seems to be happening for us. Not as quickly as I expected given my husband's previous potency, but certainly I can see the nerves repairing in my mind now. Just takes some thinking through to have the patience to recovery fully. I also have not commented on this much before as it would have to be the hardest thing to articulate. Hoping this gives other some hope in similar situations.


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 10/17/2007 8:34 PM (GMT -7)   
tongue   Lana,
 
You are quite a lady... thank you!! for everything... Your kind words are heartfelt.
I looked up the "Bell Miner" bird and listened to their song!!!  It truly resonates through the trees.  What beauty we have that surrounds us.  Ahhhhhh Mother Nature.
 
Good that you moving to find out about the depression.  And the weight gain will go now that things are settling down.  Plus ~ your new schedule will have you hopping... : )
 
Take care dear friend ~ it's good to see you staying close. 
Warm Thoughts and Gentle Hugs... from Lee & Buddy
 
 

biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 10/17/2007 10:15 PM (GMT -7)   
Hey Lana I'm really glad you had the courage to post your experience. You will definitely help and give hope to others on this journey.

ED becomes the big deal after we find out we aren't going to die from cancer yet and we dry up downstairs. Most (if not all) doctors have no "hands-on" experience with it and, as you found with your family doc, sometimes mislead and misinform us. Think of all the poor souls that don't come here to find the real story. If I had believed my family doc and first uro, I'd be a vegetable now. Its only through reading the real experiences of you folks here that I have a really good life now. And MaryLu is a happy lady.

Our life is in our hands - we must take control of our own recovery...

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2C. Gleason 3+4. Cancer confined to prostate.
PSAs from  1/3/07 - 10/17/07 0.00. 
T level on 4/2/07 - 48     On 7/16/07 - 613
Started Tri-Mix on 8/7/07.  .02 ml and 50 mg Viagra.  It works!!!
Next PSA and T tests on 1/15/08
 
"Patience is essential, attitude is everything."
 


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 10/19/2007 12:38 AM (GMT -7)   
Dear Lee & Buddy (+ Murphy of course), Jim & MaryLu, Cedar, Puget, Pete42, "Green" (my dear cyber-drinking partner), Kat and others,
 
Guess What!  Another undetectable test with 0.02 PSA today - 19th October!
CJ hung the washing out, vaccumed and cleaned the bathroom before he rang up for the results today!  I rang him at 11am today from work to ask him what it (PSA) was and he told me he had not rung up yet....  Anyway, thank goodness he finally did ring ....(and I have a really clean house!)...
 
It (the test)  was 0.02 (19/10/07), and since the tests are ultra sensitive these days, we are happy with that, as is still undetectable for CJ,  for which I thank God sincerely. yeah
 
Thank you all for your kind words of support in the last few weeks. It has lifted my mood immensely,  so I guess I should get out more now, and share with a few friends closer by! We are going out to dinner tonight with our son to celebrate soon. Love to you all, Lana & CJ.
 
PS. The updated signature is a little over-the-top! However, you know me Lee, I WILL edit this one a little in a while! In fact have already done so once... cheers....


Creed_three (Lana & CJ)
Parents of 7 yr old son, and share 2 adult kids (30 and 22 yrs)
Married 7 years.
 
Husband CJ aged 49 yrs. 
First PSA 3.5 (Nov 06). 1 x (5%) core of 12 positive at biopsy. 11 cores negative. Open Radical Prostatectomy with nerve sparing, on Tuesday 17th April 2007 (Sydney, Australia). Gleeson 3 + 4 = 7.  Cancer confined to prostate. Margins all clear, including bladder neck and seminal vessicles. 2 x small cancerous lesions near R. Apex identified (Gleeson 7 - intermediate). Size of larger lesion was approx 1/5th of a sugar cube. Smaller lesion was smaller than that.
In good health 6 months post-op. No continence issues to 6 months.
1st PSA 0.01 - undetectable (June 07)
2nd PSA 0.02 - undetectable (Oct 07)
 
Very thankful to many friends on this "healing well" prostate cancer forum!

Post Edited (creed_three) : 10/19/2007 6:50:35 AM (GMT-6)


GreenAcres
Regular Member


Date Joined Jul 2006
Total Posts : 474
   Posted 10/19/2007 7:12 AM (GMT -7)   
Hey, Creed - it's PARTY time! That's the best news - and while no excuses are ever needed for tipping a glass or two - here's one for you! We just got our undetectable, so I think this calls for a "double."
Husband age 66
PSA on 5/1/06: 4.2 (had doubled in 13 mos. and rising monthly)
DaVinci Surgery 8/2/06 - Austin, TX w/Dr. Randy F.A.G.I.N.
T2a (at biopsy)
At pathology - cancer cell leakage into fatty tissue
Post-Surgical PSA on 10/06, 4/07 - undetectable!
Update: 11/1/06 - perhaps bladder neck involvement; 30%-50% chance of recurrence
PSA test "Un-zero-detectable" on 10/16/07.
If it stays that way for 7 years, recurrence rate drops to 9%.
Future: PSA tests twice-yearly for now.
 

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