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RRP followed by PSA Rise

hewhositsoncushions
Posts: 279
Joined: Mar 2017

HI all

So I went in on Thursday morning for my RP.

Spinals and catheters were a bit of a drama but got there in the end. Don't even remember going down or waking up.

Felt woozy for the remainder of the day which made getting used to the catheter fun.

Consultant said the surgery went well and that he managed full nerve sparing on the left hand side and the rest went perfectly. Six weeks to wait for the biopsy review.

Had lots of chats about after care and have a load of meds and laxatives to work through plus 28 days if blood thinning injections.

Have got massive bloating but not where I expected. Face was fine, abdomen slightly distended and getting floating gas in my shoulders but the suprise was, well... lets just say the word cantaloupe describes my current underwear containment needs :)

Had one porthole leak on me but we are managing that.

No sensation loss anywhere that I can feel (bloody toes hurt this morning being stuck in the DVT stockings overnight) and Mr Willy doesn't appear to have lost any feeling. No pneumatic reaction though which was not surprising.

Feel worse today I suspect as the operation meds are wearing off. Working really hard to take it easy.

Constipation is going to be my big battle - I have not gone yet and ever time I try it feels like I am tearing my innards up. Need to be patient!

Only big hit I have had was the job offer I was waiting for got pulled due to budgets. Gonna have a fight to get back to the real world soon.

I have to say I attribute a lot of the success outside of the medical team skills to the fact that I lost over a stone (more to go) and went on a hardcore training regime for two months before the op. My fitness levels are now the same as someone a lot younger, but I will need some work to recover what I am going to lose over the next month of recovery. Something to bear in mind!

Thanks for all your support, folks!

Cushions

PS - watch out for laughing and coughing.

Lucky64
Posts: 29
Joined: Jun 2017

Hi Cushions,

I'm leaning towards surgery, I'm a Gleason 4+3, what is your age and #? Was it robotic? My surgeon says I can stay two nights in the hospital, did you need two? What excecise prep did you do to help with surgery? Why will it take 6 weeks for the biopsy?

All the best,

Nick

paulc59
Posts: 10
Joined: Dec 2017

exactly 3 weeks recovered today--gleason 4+3 locally contained but 6 of 7 samples positive--after a month of second opinions decided on davinci--no thank you to hormone therapy and 9 weeks of radiation.  Spent one night in hospital--had no issue with foley at all,actually liked not having to get up 3 times a night to pee. Belly pain lasted 2 and a half weeks,but right now i feel great. Ive noticed its a little painful during bowel movement but i believe its hemoroids,i was constipted for about 3 days after surgery and was worried,but i stuck with stool softeners and coffee and alot of walking around house and it worked. Absolutely nothing from down below despite saving half my nerves-not worried yet----time will tell. my penis defeintely looks different--i lost an inch--not happy about it. Leaking is an issue!! my bladder doesnt seem to be totally emptying, thus afterwards if ii sit down or tilt forward i leak-again ill give it some time--psa test still 3 weeks away-if it reads zero-iwould have to say it was worth it

Old Salt
Posts: 720
Joined: Aug 2014

But glad to hear that the surgery appeared to have gone well. 

Hope that the catheter bags (and multiple diapers) will be a thing of the past before too long. In the USA, the advice for most prostatectomy patients is to start walking ASAP, but be gentle to yourself, for obvious reasons.

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

Congratulations on pulling thru without complications. The constipation thing is always a problem. Give it three or four days. I've had three abdominal surgeries in the past year (two in recent weeks) and start with a stool softener immediately, first night add a stimulant and another the next morning. Increase the dose each day, morning and night. If by day four still nothing (including your post-op day) then do something drastic like magnesium citrate, double the normal dose. I always hate having to deal with this, but it is unavoidable.

BTW Lucky, my robotic involved only one overnight in the hospital.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

Cushions,

I'm glad you are along the path toward sitting wheresoever you wish, on whatever you wish.

Two facts you shared intrigued me:

1. Why will the pathology report take 6 weeks ? In the US, men get a pathology summary in the recovery room when they wake up (if they ask).  I asked, and the doc shared that the tumor(s) size was different (larger) than thought, and had been adjusted to Stage II.   He gave a great deal of detail, which had come to him from the pathologist.  Why on earth six weeks ?  I got a surgeon's summary of the whole proceedure (per my request) within two weeks or so following discharge.  It is good to have this; questions will arise later that have not even occured to you yet.

2. You said nerve-sparing was successful on one side. What occured on the other side ?

Urinary: In the US, post-op hospitalization is usually over the next day.  Cath time is usually under one week, and because of when the weekend hit, I got mine removed by the RN on Day 4 post op.  Cath removal is painless.   I took a disposable adult male diaper per direction for cath removal, and wore it the remainder of that day. Uncertain how things were working, I wore a diaper most of the next day also, but by then I transitioned to a large pad, and never wore a diaper again.  I had relatively good urinary control by three days following cath removal. Pad use can easily last weeks, and sometimes much longer.  Pads and liners come in an assortment of sizes to tailor to your needs.    I have much better urinary contol post RP than I had before, and will never have stricture issues.

Sexual:  My pelvic region was TOTALLY numb for some time thereafter (well over a month), but I was having sex via injections by I believe within two months or less (this is from memories of 2.5 years ago).  Sex was not good prior to the surgery, due to the disease -- some particulars that the tumor caused that I do not feel ok sharing here.  Sex was encumbered post-surgery, but it was encumbered pre-surgery also, so how could I blame surgery ??

Pelvic sensation to touch can easily take several months to a year or more to return.  As I have written here many times, I was in ICU decades ago following massive trauma, mostly to my chest, but also had a surgical incision on the side of my hip a foot long for rod insertion of the femur and wiring together of the hip.  My pelvic region, including all of the genitilia, was totally devoid of sensation for  OVER A YEAR.  But sensation returned to normal.   The only doctor I was routinely seeing at that time was the orthopedic surgeon, and he said he did not know what had caused the loss of sensation (I was 30 years old then). 

I asked my urological surgeon about this history two years ago during an office visit following the RP, and he said his best guess was that it had been drug induced, since I was on a morphine and muscle relaxers IV (Darvon and others) for 24 days.   My point is that the pelvic region can be numb a long, long time and then recover, as mine fortunately did.

But what any given individual's does only time will reveal to them.  I simply suggest tht if you have no pelvic feeling for months, do not dispair.   Sex returns much more slowly than continence. Get on Cialias as soon as possible to maintain blood flow to the vascular tissue in the penis, this is critically important.

Wishing you well,

max

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

Max - That's called "socialized medicine". There are probably ay least a dozen offices that need to sign off on the report before the patient is allowed to see it.

After all, they've got to give the bureaucrats something to do!

hewhositsoncushions
Posts: 279
Joined: Mar 2017

@Lucky

I felt RP was the logical option as I was 51 with four cores G7 (4+3) at T2. It seems to be the consensus that for younger (ish:)) people RP followed by other treatment is better as doing salvage RP after radiotherapy etc. is harder. I stayed one night and was discharged mid afternoon. I could have gone earlier but I had a slightly elevated temperature. Trust me - one night in a 4 person ward cube is enough. I had to be woken every hour overnight for obs. Prep wise I hired a personal trainer and dietician team two months in advance and tried to hit 2-3 sessions a week (HIIT / Tabata with high rep mid level weights as well) with the trainer, kept calories below 2000 per day (with some fasting) and aimed to get as much above 10,000 steps a day as possible. I doubled my fitness levels over that period! I lost over a stone and am convinced that the dient and training made things go far easier and will also make recovery easier. The follow up meeting is six weeks standard for the NHS.

@Old Salt

Thanks. I have no idea why they canned the role but it happens a lot in my trade. I seem to be doing OK with the catheters - my wife has been an angel with all the messy fundamentals. I owe her big time! I am moving around and keep getting told off for trying to overdo it. Need to be patient!

@Rob

Thanks for the advice. I have a washbasket full of meds to take which include two different types of laxative. They only kicked in today when I tried to pass an elephant. My son was mercilessly ribbing my screams of pain from the bathroom (but he did give me a well done hug afterwards :)) I hope this means things start flowing normally now!

@Max

I think you pressed submit too early :)

 

 

 

 

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

 Cushions,

Thanks for the report. As you can see many guys are interested in your story and reading your posts. It is petty that you did not maintain them in a single thread. In any case for those interested, they can follow your story in these links;

https://csn.cancer.org/node/308573

https://csn.cancer.org/node/309415

https://csn.cancer.org/node/310010

https://csn.cancer.org/node/309464

So far all seem to be in your favour. The PSA in one month will verify the treatment success. It should be less than 0.06 ng/ml. The pathologist’s findings on the whole gland will be important for future interventions if needed. You should get a copy of the report.

Best wishes for a final good conclusion on this bad chapter in your life.

VG

 

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Vasco

I wasn't being petty - I did not know that was standard protocol. Thank you for clarifying that. I will try and tie everything up going forward.

I'm just settling back and seeing what happens now.

C

Grinder
Posts: 441
Joined: Mar 2017

Maybe VdG meant to say it is a pity (???) and spell check changed it.  Glad to hear you made it through. I was also dealing with a GI infection during my RP. After what you want through, maybe it was a blessing that I did not recognize. :) 

Be patient, it took me longer than the expected three months of incontinence, but eventually this amazing creation of our bodies adapts. Sometimes it takes longer than usual.

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Hi all

I've been TWOC'd (Trial without Catheter not Taken without Consent!) and have been suffering some nerve pain for a few days so I gave things a break but am back now.

I thought it worth (bearing in mind the suggestion aboove to have a single story thread) to roll up my progress todate. Here goes...

"The story so far", to the tune of https://www.youtube.com/watch?v=2X_2IdybTV0 (those of you who watch Supernatural will get this :))

Chapter 1

Arguing with Gp about T therapy led to me getting a bunch of blood tests, which led to him noting my PSA was 4. Two more tests over the following year gave similar numbers so I got sent into the Urology department.

Chapter 2

After some shenanigans about being dropped into a biopsy with no preparation, I eventually had two biopsies. The first (plain sailing) came back with ASAP cells and the second (bled like a stuck pig) came back G7 (4+3) intermediate with normal sized prostate.

Chapter 3

Went for an MRI which put me at T2 likely contained. Had a long chat with the consultant and we ended up where he wanted (and I knew was inevitable ) - Da Vinci RP.

Chapter 4

Surgery (a week and a half ago now) went well although I was terrified beforehand as I have bats in the belfry (GAD etc.). Canula insertion issues meant I needed two of the damn things. Ditto spinal. Don't remember a thing from the moment they touched the syringe to the canula to waking up in recovery. Surgery went well and the consultant said I had full nerve sparing on the left and a good clean job overall. An overnight stay in the ward and I was home the next afternoon. Totally spaced out and very stiff and sore, wired up to a catheter for the win and loaded down with enough meds to fill an "Oxy bus"!

Chapter 5

A week on catheter and drugs dragged especially as the cather balloon made me feel like I wanted to pee all the time. Had massive swelling in my nether regions (think small coconut) and my hips looked like they had been hit by steel pipes. My cuts started to heal but as the superglue fell off, some leaked a bit which meant new dressings every day or more. Generally stiff and sore. Three days after my surgery I had my first BM. Ohhh Godddd!!!!!! Never again!!!!!

Chapter 6

Had my catheter taken out a few days ago. That was another "never again!" moment. Amazingly (I should not put the mockers on) I was pretty much fully continent from the get go. I leak when I cough, laugh, sneeze or whatever but otherwise pretty good. Main downside is bladder sensitivity and shrinkage meaning frequent trips to the loo and it hurts like hell when the peeing stops. I am trying to keep up with my kegels but keep forgetting. I'll pay the price if I don't pull my finger out! Bowel taking a battering due to the laxatives but hey ho. The blood thinning jabs are a pain in the stomach :) I hate doing them and they cause mini bruises due to the thinners. On the bruising front, I blossomed on my arm and sides for a good few days before they started to fade. Other annoying side effect is nerve pain started yesterday mainly on the outside of my thighs at hip joint level, mainly on the left with some random traversing pain, especially as my innards do their thing. At (short) times this is crippling. I will monitor and get it checked it it continues or worsens. I also (ahem) got a semi yesterday (terrified me!) so that is a good sign but I am not pushing it! Biopsy review in August.

EDIT: Forgot to mention I reckon I've lost an inch flaccid but hard to tell due to swelling.

EDIT: Also not sure if swelling has any lymphodaema elements yet.

Positive takewaways

Losing weight and getting fit was what got me through in the state I did.

Negative takeaways

My fear and negativity was far worse than it should have been (I think the consultant thought I was a big wuss) and I keep getting dark thoughts about job prospects, family issues and long term health. My only cure at the moment is to soldier on. At least I have job prospects on the boil now. I am slacking off on med timing and walking - getting complacent. Need to sort that out along with the kegels.

 

 

Thanks for all the support folks!

Cushions

Grinder
Posts: 441
Joined: Mar 2017

Only an inch?

Partially continent already?

Mr. Happy is starting to smile?

That was fast... Here's some more positives to add to your RP list...

No more fingers up your keester. By the time I had a biopsy, I had had more fingers up my butt than Boston Pops has fingers playing instruments. 

No more Foley catheters. I had five Foleys inserted, occasionally in humiliating circumstances. I never got used to it. It is probably the most hated but necessary invention. Emergency room personnel often screwed it up, but the urologist office PAs were much more proficient. One time I had one male and two female ER nurses struggling to get one in while I laid there in naked misery, as I started bleeding all over them and myself since they couldn't get it past my ginormous prostate. After thirty some minutes they gave up and the head ER doctor called up Urol of Ind and said I was their problem and they better do something about it. And people wonder why I opted for RP. I

No more UTIs... I don't know if you had this problem, but mine are gone. The urinary tract always got inflamed when the prostate got infected. Much worse inflammation than an STD, which makes it all the harder to get any stream of it burns like hell. And with the inflamed UTIs, it makes the Foley, or worse the self catheter, feel like a hot poker going up your business. 

No more fingers in your butt, no more Foley catheters, no more inflamed UTIs...  No more Flomax either. No more prostate biopsy, that's supposed to feel like a little sting but the last six weren't numb yet and felt like Excalibur being run through your rectum.

That's a lot of "no mores" that are worth celebrating, come what may.

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Cheers Grinder

Lots of positives as you say but I am struggling to not dwell on the negatives.

Being unemployed (I paused work as a contractor to get this sorted and am now trying to get a gig which is a worry even though I have some cash), having lots of stomach / GI pain and some nerve pain now the painkillers have run out and generally feeling like a whiney burden to my family is a hard nut to crack.

I am also still getting very tired after pottering around or even a twenty minute walk and have slept really badly the last half week.

Any advice on getting over this hump? Is it normal?

Cheers

C

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

Cushions,

Something seems not right in your posts. I understand that all the fuse of the diagnosis and operation was a pain in the neck. The recovery is underway positively but your wording makes me think that you are not satisfied. Something in your mood is not right. You worry too much. Have you checked the testosterone levels? At low levels menopause sets in and the symptoms could be playing a trick without you noticing it.

I hope you recuperate fully the soonest and that you find a job.

Best,

VG

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

I do not know if this relates, but being tired is also a problem on the Keto Diet.  The first cause can be not drinking enough water.  This may relate to you.  Strangely, another problem is not having enough sodium or a deficiency of Vitamin b5. Anyway, just a few ideas for you.  Best of luck in your recovery.  Your story makes me feel grateful that I only have Stage 4 bone cancer.  Ha Ha!!

Love, Swami rakendra

Grinder
Posts: 441
Joined: Mar 2017

He's right... It could be a vitamin deficiency. You could try sublingual B12 and B complex vitamins. Often mood swings are B vitamin deficiency. Also you can eat foods with mood enhancers. Turkey has tryptophan which the body converts to serotonin. You should also avoid red meat. But you need certain vitamins and foods for your body to produce endorphins which improve your mood. And you want to avoid foods that have or will produce fear and flight hormones like adrenaline. Like red meat that hasn't been bled kosher style. 

Anytime you have mood swings that can't be explained environmentally, I would look at diet and vitamins first, and the resulting production of mood enhancing brain chemicals versus the trauma fear and flight hormones. And like VdG said, add lower T-levels just makes it worse. 

And then what Paul the Apostle said... Contentment with godliness is great gain.

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Hi folks

Thanks for replying!

I feel a bit of a wuss complaining over trivial things like leg and gut pain as so much has gone well but MH issues are part and parcel of my baggage from prior to the PCa game so I guess I am stuck with them and have to keep hacking away :)

@Vasco - you are right. I'm off my game mentally. And you are correct about my T levels. That was what started this bloody thing. I had a running debate about my T levels with my GP because they were right on the borderline of hypogadism and the only picked up the PSA because he added that to the battery of tests I was having during that debate. I have the same T levels as an 80 year old man. Problem is that at the moment there is not a lot I can do about that as it is playing Russian Roulette until I get the all clear. I suspect my low mood is directly related to the low T but will have to take other means to get my head straight!

@Rakendra - I was on keto for a long time before diagnosis and yes, it did make me struggle as I was in and out of ketosis all the time. I also don't drink enough water (I live on black coffee). I may well have vitamin deficiencies but I need to be careful about addressing that as there are contra-indications about some vitamins. I need to do some research and review my vegan / pescatarian diet. And somehow I think I got off lightly compared to Stage 4 bone mets!

@Grinder - you are confirming the above. Diet and vitamins. I'm pretty much vegan / pescatarian but frankly sice the operation I have been winging the diet planning because I have been so wiped out.

Overall, I suspect I need to up my game with regards to self care. The first step was that I've consulted the ward and resupplied myself on painkillers and anti-constipation meds so hopefully I will start getting some sleep and a clearer head.

Cheers

C

Will Doran
Posts: 207
Joined: Sep 2015

Cushions,

Aaaa,  I don't know about the "no more fingers deal".  I had my RP in Dec. 2013.  Followed by 8 weeks of daily Radiation and two full years of Hormone Therapy.  At my yearly physical at Radiation Oncology, I still have to have a DRE to check that there is no swelling or lumps in the empty cavity.  They check because of the radiation treatments to the prostate cavity area, that was done as follow up.  I hope you don't have to have any more DRE's.  That would be great.  Again---we are all different and all of our cases are different so you might avoid the further exams.

The hormone treatments and the radiation treatments will pull you down.  I went through the mental thing as well.  Now after being off the hormone treatment (Lupron) my testosterone is back up in the middle of the normal levels.  I feel like a different person.  Thank God my wife was an is very understanding.

As to the constipation problem, My doctors told me to take Benefiber every morning.  I eat my wife's home made whole grain bread every day and lots of fruit and Veggies, and cut back on the red meat.  Still eat a little, but not like I used to.  By doing that, I was back on solid food the day after my surgery and had no problems.  In fact Dr. M insisted they take away my semi solid diet at lunch, the next day, and he made me eat a full solid meal before he would let me go home that afternoon.  I Had no BM problems.  Again---our cases are all different, So, can't tell you what to do.

As to your pain, I can't relate to that, becasue I didn't have that and never took any of the pain medication they sent home with me.  I was back on my Aleve and Arthritis Tylenol two days after (doctors orders) so I geuss that took care of any pain.  But I did not take any of the Opioids they sent home.  I had been warned about the removal of the Catheter, so I took two of those pills before I went in to have the catheter removed.  I walked in with my catheter bag in a State Liquor Store Bag and they all laughed.  I was on "the table", looked at the nurse and sadi, Let's get this over with."  She held up the catheter and it had already been removed.  I didn't feel a thing.  I was in La La Land, they had a good time, and to this day tease me about that day.

An Inch?  Yep, I understand completely.  I was warned about that.  However now that I'm coming up on 4 years post surgery, things are getting almost back to "normal" ( for me).

Best of luck

Peace and God Bless

Will

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Cheers Will

Your experience puts me to shame :)

You are right - no Prostate, no DRE which is a relief - just the dreaded ongoing PSA tests for the rest of my natural.

I have three weeks to go before I get my final results. I'm getting a grip on my anxiety so I'm not catastrophising the situation as much anymore.

With regards to hormones, I'm lucky in that I have just had RP - the hormone issue I have is very low T (like I'm 80 hormonally) which really does eff with my moods and confidence. This on top of being a total burn out case (work issues) prior to the diagnosis pathway meant I have been a total wuss oved the course of the diagnosis and treatment. I'm really rather ashamed at myself but I finally decided what I did or what people think of me doesn't matter now. I just have to (excuse me) nut up and get on with it.

Constipation wise, I extended my post op treatment with the pills and powders and I seem to have settled down a lot. I need to get my diet back on track as although it has not been bad, it has not been on point.

What I find really interesting is that post surgery even with no calorie tracking I still continued to lose weight. I wonder if the recovery process burns calories?

Pain wise, I can now live with the twinges and aches and am just monitoring them.

I'm still finding it hard to decide how much length I have lost as I have a lot of lymphodaema around my meat and veg and the semis seemed to have died down. I'll just have to be patient and see whats happens.

Thanks again for your input!

C

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Literally a moment after saving the above I had a call from my consultant.

My first words (typical me) were "do I need to panic"?

He said "No!"

He said the gland had a lot of tumour (need to find out how much at the consult) but the margins were clear and so were the vesicles and glands. I see him in three weeks for the details but I am so glad he rang up to tell me know. I suspect I may have had a significant upgrade but we will see.

I'm shaking right now!

Thanks for all your support!

C

FinishingGrace
Posts: 83
Joined: Apr 2017

So glad to hear your good news. :)

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

Congrats Cushions... negative margins and SV keeps you out of the SRT realm, and I assume the negative glands refers to lymph nodes? If so, even better!

hewhositsoncushions
Posts: 279
Joined: Mar 2017

HI Rob

Yes, clear lymph nodes. The consultant was very brief as he was squeezing a call in between lists but the gist was large tumour, fully encapsulated.

I struggled to take it in because I was taken by surprise but it is a damn nice surprise.

I suspect if it had been bad news he would not have rung me and would have waited for the face to face.

Just got to get my head in the game now and get the rest of my life sorted :)

C

Grinder
Posts: 441
Joined: Mar 2017

Sorry you are still getting DREs. At least it is only once a year. I had a conga line of six different GPs and urologists taking turns to check out what I affectionately called "Godzilla". Even after thousands of RPs, the personnel at St. Vincent hospital said it was one of the largest they had ever seen. But now Godzilla is no longer around to terrorize the villagers. 

hewhositsoncushions
Posts: 279
Joined: Mar 2017

@Grinder - could have been worse - could have been "Mothra" - those wings would sting coming out :):):)

Grinder
Posts: 441
Joined: Mar 2017

Now that you mention monster movie trivia... I often had a inflamed urethra as well, and you know who breathes fire.... Surprised

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Where does the time go!?

I had my continence review and got a pat on the head but a mild telling off for drinking too much coffee and not doing Kegels enough.

Still waiting for the official review - I reckon I'll go from a 7 to an 8 but not losing (too much) sleep over it. Brain gets in the way occasionally but I just slug it out.

I have one question - fatigue. Four / five weeks out and I am still mentally and physically low battery (afternoons are a wash out) even with reasonably good diet and sleep (nor walking enough though!). Anyone know if this is common?

C

Will Doran
Posts: 207
Joined: Sep 2015

Cushions,

I can understand catching "H" for not doing your Kegels,( I still do mine after almost 4 years)  But Too Much Coffee?  I never heard of such a thing.  In fact when I was in the hospital, they gave me coffee with my liquid supper the evening of the surgery. And the next day at  Breakfast & Lunch, I also had coffee. My Urologist/Surgeon also told me that a little Kentucky Bourbon (his favorite) or my beloved Vodka were good three or four times a week.  Just one drink.  As to Coffee, I drink all of that I want.  Doctor said that was fine and helps clean out kidneys and baldder.  I'm coming up on 4 years post diagnosis, and have hardly any control problems.  Just when I lift heavy things, laugh really hard or after I've been on my indoor trainer / spinner bike for like 40 minutes or more and then get off the seat.  Then I do my weights and get back on the bike for another 20 - 30 minutes in the morning.  Then after lunch time back on the bike for another 30 minutes.  I was a road cyclist and really miss being out there, but I was encouraged to keep up with the Spinner Bike.  But other than that, I really have very few leak problems.  Now, I admit this is almost 4 years post diagonis.  So, I'm sure things will settle in for you.  

DO YOUR KEGELS  Laughing

 

Take Care. Love, Peace and God Bless

Will

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Hi Will

All I need to do is work on the Kegels and exercise to minimise leakage - that is just down to me.

It is the tiredness that is the pain in the arse as it feels out of my control. I just can't seem to shake it at the moment. I have no idea if it is physical, in my head or both :(

Steve

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Hi all

Formal post op review today.

No change to biopsy rating - G7 (4+3), T2, S2. Some cells were of some form of sub-type which he said he would include in the letter to my GP that I get a copy of.

Regardless, bottom line is that as far as he is concerned, medically I am as "cured" as I can be at this stage - he quoted the standard 10 years / 85% figure for BCR.

Near perfect continence and some erectile function, no lymphodaema and some mild nerve impediments which he said should fade, which puts me in the top 10% of patients for this stage post op (2 months - which has flown by!!)

I have had my first post op PSA blood draw and am looking at the regular cycle of reviews with 0.2 as the gold standard for BCR.

I can now start exercising as normal and I also have a ton of Viagra to deal with now :)

I told him I was vegetarian / pescatarian / teetotal (ish) and following guidelines for what I can and cannot eat with respect to BCR but interestingly he shrugged and said "you are as good as cured - you can eat and drink what you want now". I intend to stick with the clean living apart from the odd drink now as it has given me a 2 stone weith loss.

I'm a bit shamefaced about how much I flapped about all this but you guys have been very patient. I appreciate all the support and advice and kind words.

I'll update you when I get the PSA results but otherwise will take a break. As I said to my Mum, this has ruled my life for over six months now and I want this to be a background thing not my whole life.

All the best

C

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

Super reports, cushions !

Me, I would be headed to a prime rib and some fine English grog, but I read your post !

Congrats,

max

Old Salt
Posts: 720
Joined: Aug 2014

reading how the system 'works' (or not) on the other side. So far, so good; congratulations!

Grinder
Posts: 441
Joined: Mar 2017

Shamefaced? No sir! Speaking for myself, I want to hear everything about everyone's experiences. The Good the Bad and the Ugly. I have learned more from this forum in six months than 10 years of urologist consultations. I

Even if a procedure was routinely successful, I want to know everything about it. Even if a procedure was a disaster, I want to know everything about it. Every person's experience seems to have a peculiar component that is different, and the info provided today I expect may help another patient reading this a year or more from now.

So flap away. But this is really great that your GP says you are "good as cured". 

And someone may read your post in the future and breathe a sigh of relief to know that "good as cured" is possible. So thanks for flapping, and God bless!

FinishingGrace
Posts: 83
Joined: Apr 2017

Wishing you the best!

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

Cushions,

I am glad for reading about your good recovery and your positiveness in confronting the situation. The news from your urologist provides peace of mind though I am septic about his standards for judging cure. I hope that he is correct and that you get a remission level in the PSA test this time. I think that the review you comment above regards the pathologist's report on the analysis of the gland and SV specimens. No positive margins and no invasion are the best news one can get. The additional finding on cells with a  sub-type are irrelevant because they are thought of being dissected away with the whole gland (contained case).

In any case, just to clarify the many (and Old Salt's comment), the way to describe "cure" in Europe follows the same principles as those in USA. Probably Cushions' doctor uses this statement with a different degree of importance. I believe that he will provide his final opinion once a series of PSA results are out.
The first test is highly significant. Any PSA level below 0.05 ng/ml, in RP guys, indicate treatment success. A continuous PSA level below 0.05 indicates remission. Increases after a nadir indicate biochemical failure and a PSA above 0.2 ng/ml declares recurrence. These are the standards used by urologists on this side of the Atlantic. Some doctors treat according to arrising symptoms and disregard earlier interventions. I think that Cushions' doctor expects him to have 10 years free from wories and treat if ever the bandit becomes troublesome .

 

Best wishes,

VG

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Thanks for the kind words all. It is a relief I can tell you!

I am going to have a tipple tonight to celebrate (in moderation of course :))

As for the PSA test, he said the NHS limit is 0.2 as per the states. He did suggest (and as i thought) that sometimes the first test might be higher due to residual PSA in the body but it should fall. Wait and see....

As far as I see it, it is better to use NED as the term - No Evidence of Disease until either I get it again or die of very old age in company of a near empty bottle of Jack, the remains of a couple of lines of coke, a dozen exhausted buxom tattooed ladies of the night and with "Who wants to life forever" playing in the background :):)

He did also say that in very rate cases, people present with PSA at or above the limit with no actual cancer (I read something about some base of the bladder cells being involved but may be wrong). I see this as an edge case and nothing to worry about.

From here on in, the conversations with be with a key worker and not the consultant unless things change so that will be a change of dynamics.

A very relieved C

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

Yes, I like the way you see the positiveness of the situation. Your choice for the end of life is Excellent. LoL ......

In the end what makes us happy is the quality of life we get. For me quality is first; quantity comes in second. However, I become apprehended at each PSA. I see it as the threatening of my quality of living. My wife groups with the NED's style in treating according to symptoms. No doubts that they live better than me (and probably much longer), but for me to follow that principle is difficult if you know what is happening or know what will occur. After so many years with the unwanted guess I feel a sort of responsibility and wouldn't sleep well if not caring about the situation. This is like living a handicapped life.

With the NED's approach, you do not need to care about any development in the future until the PSA reaches the threshold of 0.2 ng/ml, except if a symptom arises firstly. To look for the in-betweens you must rely on the NHS vigilant doctor. You just have to remember in getting the due periodical tests.

I will join you for a bitter. I like the Ashbourne's Porter.

Best,

VG

 

 

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Hey all.

Had to ring the hospital to prod them for the results of the post op PSA test from last week.

It was 0.05 which makes me a very happy bunny.

Looks like I will have to act as ringmaster for all the follow up because although they are very good and very nice people in isolation, the joinedupness and proactive communication is .. lacking.

Now, where is that beer?

C

contento
Posts: 76
Joined: Jul 2017

Congrats !!! waiting for those  PSA results is just nerve racking..

Let's hope this trend continues !!

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

Yes, where is that beer?

I am happy for the news. This is the result we all want to hear. In three months get another one and celebrate. That is the begining of remission and continuous party.

Enjoy,

 

Will Doran
Posts: 207
Joined: Sep 2015

Cushions,

Congratulations on the news.  Yes, waiting for PSA Test results is the hardest thing. Mine went down to <0.010 and stayed there until a year ago.  Now that my testosterone is back up to normal my PSA has come up but is still less than 1.0.  By your next test I'll bet your PSA will be even lower and you will be a "Happier Bunny".  I'm coming up on all that in two weeks.  Then have appointments with my surgeon/urologist, My new chemo doctor, and also my dermatologist for my melanoma checkup.  I have had 14 melanomas removed since my Prostate Cancer diagnosis.  Had Melanoma over 15 years ago, and then it came back during my Prostate Cancer recovery and treatments.  You may want to talk to your doctors and see if you should be checked for melanoma.  I was to a specialist in Hershey, PA who is working on Melanoma as it is related to other types of solid tumor cancers.  I am checked every 3 months.  The last year, I have been free of melanoma, again.  Of course I am a blond haired, blue eye guy of German background (all sides of the family), raised on a farm and out in the sun all the time.  

I had told you that I had some leaking problems when I lifted weights and got off my indoor spinner bike.  As of Last week, that has all stopped.  I have had no leaks for almost two weeks.  It will be 4 years next week since I wasd diagnosed.  I'm very happy right now.  I am back to "going commando".  Hadn't worn underwear since I was in Jr. High.  The last almost 4 years have driven me nuts.  I had forgotten how uncomfortable briefs are.  Had to get briefs to hold my "pads".  I'm to the point that even after I shower I 'm not in much of a hurry to get dressed.  I never was before and now I'm back to "my good old self" as my wife says.

So it takes time, have patience, and things will improve.

Good Luck

Love, Peace and God Bless

Will

Grinder
Posts: 441
Joined: Mar 2017

I wore boxer briefs with my pads. Tidey Whitey briefs are for mommy's little angels. Wife agrees, I look better in boxer briefs without clothes instead of briefs or boxers. There is no way in h*** she would let me visit the in-laws going commando. :D

This is just my opinion, I am not a professional fashion designer. ;)

Will Doran
Posts: 207
Joined: Sep 2015

Grinder

Oh, you have in-laws to please as well?  I've given up on trying to please the mother-in-law.  My whole situation is what's keeping my wife from having to run 100 miles, one way, everyother day just to please.  All the rest of the family lives on neighboring properties on the farms.  So, mother-in-law has all of them running as well.   Wife has given up as well.  We go every other Sunday.  And if there are home, college football games we don't go away from the place because of all the hung over drivers on the road.  We've taken the attitude that life is too short and we have limited time left together so we do what we want and live our lives as we want.  I tried boxers with the pads, and they got all twisted and that sticky part was rather uncomfortable when it was stuck to my body hair.  Boxers just didn't work.  I didn't think of the boxer briefs. That probably would have been better.  But I really don't care now, I'm back the way I like to be.  Commando.  They are the "family" members that drive me nuts.  They think I'm all over this cancer fight and all is done , since I had the surgery and treatments.  I can't get it through their thick heads that this is never over.  It's always hanging over your head and you have to keep fighting until your last day.

So, off to the mother-in-law's----Comando.  It's my life and I'll live it as I wish.Cool

Love, Peace and God Bless

Will

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Hi all

Got the final letter with the butcher's bill this week.

  • Robotic assisted radical prostatectomy with unilateral right sided nerve sparing and bilateral extended pelivic lymph node dissection for primary pattern for Gleason 7 prostate adenocarcinoma
  • Gleason 4 + 3 (50% mucinous subtype) Pt2c specimen
  • 7 negative lymph nodes
  • Negative surgical margins
  • Organ confined
  • Tumour volume 3% of total
  • PSA 0.05

It all makes for good reading but I am a bit annoyed at the consultant when he said over the phone "there as a lot of tumour" when he gave the informal brief. Am I missing something or is 3% a lot of tumour or was he being dramatic?

I have researched the various subtypes and it seems I am a special snowflake with the mucinous subtype as it is rare and some think it is more aggressive and harder to treat but more recent research suggests otherwise. Since I am organ confined I am not too worried.

Also Pt2c implies both lobes involved but at only 3% I assume that the cells are scattered rather than being one big mass?

Finally no mention of the seminal vesicles that were removed - do they come under the lymph nodes or are they just being ignored because they are clear?

Any advice gratefully received.

Cheers

C

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

A simple note on your query; If invasion of seminal vesicles were verified then your pathology stage would be pT3bN0.

I am sorry for the short answer but I believe that the CSN administration is not satisfied with my comments/posts to the many. They just deleted one entire thread addressed to me resently.

Old Salt
Posts: 720
Joined: Aug 2014

I don't think the report states that seminal vesicles were invaded. And, as I read backwards, the July 17 post of Cushions states 'no vesicle invasion'. Good!

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Hi Salty

Yes it was T2c - no invasion of the vesicles but it is an annoying no win situation in that my chitlins had to be chopped out to prove it but could have stayed in. No porn career for me :( :):)

FinishingGrace
Posts: 83
Joined: Apr 2017

The deletion of any thread that is faithful to the sharing of experiences and information is a great loss to this entire community. I hope you aren't discouraged Vasco as your input is greatly valued by many. Please continue to share your knowledge.

CSN_Simone's picture
CSN_Simone
Posts: 62
Joined: Nov 2013

Hi Vasco, 

 

If you can let me know the author of the thread via the 'Contact Us' form we can research it further, but I can let you know that we do not delete threads in general as we are then deleting many members' contributions. Many times members will edit out their own threads or ask us to remove them. We do sometimes remove threads if they are in direct violation of the Terms and Conditions. The most common violation of this is the 'medical advice' clause I've shared below. As you guys know, it is a fine line between sharing your own experience and providing direct medical advice towards someone else's unique situation. We always appreicate everything that our members bring to these boards and the site in general, but we do also have to enforce the Terms and Conditions that allow the site to exist. If you ever have any questions, please reach out to us here as we are always happy to help.

 

Best Regards,

 

Simone

CSN Support Team

 

"No User shall advise other Users about medical care or attempt to influence their medical care decisions. Medical advice to others is strictly prohibited, regardless of a Member's medical education, credentials, or experience."

Old Salt
Posts: 720
Joined: Aug 2014

The lawyers appear to rule the Forum, not common sense...

Cry

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