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Just diagnosed at 41

User
Posted 13 Apr 2023 at 01:29

Hello from the US.  My Veteran's Administration GP doctor "accidently" had my PSA tested this January and called me to tell me that evening to tell me my PSA was 12.6 and what all that entails.  I had another test a couple weeks later that came back 10.8.  One more again 3 weeks later was 11.1.  Had a biopsy and just got the results on the phone this afternoon.  Gleason 3+4 which the urologist called Gleason stage 2 but it concerned her that almost all the cores came back with positive results. 

 

I had prepared for and even expected a positive result, but the bit about so many positive cores (she didn't say how many out of how many) and her concern on that subject has me more wound up than I was expecting.  I'm calling tomorrow morning to schedule the needed scans for ASAP.  Lots of thoughts going through my head at the moment.  I just got this call on the way in to work so I haven't even told my wife the results yet.  Just had to tell someone.  I have been reading the forum a bit over the past couple of months and really appreciate your community.  I was hoping I wouldn't need to create this post but here I am.

User
Posted 13 Apr 2023 at 12:23

Welcome to you across the pond, ATC.

I've been diagnosed recently too and it is a shock to the system. This is a great place and I'm sure you'll find lots of support and advice from people more experienced than I am.

All the best

Nick

User
Posted 13 Apr 2023 at 14:10

Well all my cores came back positive with 95% involvement and Gleason 4+5. My PSA was 25. Now five years later, after RT, my PSA is 0.1 . No one knows what the future holds, but you are a long way from death's door.

Dave

User
Posted 13 Apr 2023 at 14:47

Hi, first thing is to try and get your cup half full. i was diagnosed 2021 (  im 73) ,my PSA was 21.4, with a Gleason of 9 I must admit that i had some scary thoughts, the treatment  i have had from the NHS has been fantastic, i was worried about side effects but they have not been as bad as i thought they would be, i  have had hormone injections and three months of radio therapy, none of it was great but none of it was really bad.

i am now on three monthly hormone jabs and my PSA is now 0.16. do your best to be positive as much as possible.

im sure you will come through it OK.

best wishes

User
Posted 16 Apr 2023 at 00:31

Thanks for the update. I'm glad cores weren't quite as bad as first thought. I'm also glad you have access to good health care. 

Dave

User
Posted 16 Apr 2023 at 21:14

Sorry to hear you have had to join this forum. I was a civil Air Traffic Controller for over thirty years in Scotland ( en-route as you chaps like to call it😂) I am beginning to create a half baked theory that a lot of air traffic controllers seem to get PCa. I don’t know if it’s the shift work, bad diet or the odd drink to relax.

It could be we are all just getting older.

It certainly was not due to cathode ray tubes as I never worked one in anger, all my equipment was digital.

I was retired when I was diagnosed with cancer ( click on my avatar to see my bio ) although some controllers did get it earlier in life.

I’m sure the FAA will make life easy for you🤔

Just find out as much as you can about your treatment options.

Rgds
Dave🛫

Edited by member 16 Apr 2023 at 21:15  | Reason: Not specified

User
Posted 04 May 2023 at 12:51
Good to see the treatment plan is progressing. I was going to ask if you the FAA would give you a non Ops job. The company I worked for was the biggest ANSP in the U.K and it was part privatised ( I know that is an anathema to to guys in the USA ) however it’s works pretty well ( we always get our monthly pay check, it’s never withheld 🤔😂 )

When we were a 100% government department we had a very good medical branch, now the company has a very good Occupational Health department.

ATCO’s with medical problems were traditionally placed in Documents and Procedures or the training section to develop and run simulations. Generally they were treated well and then were sent back to re-validate on sectors once they got their medical back.

Having seen what sort of shifts you guys work ( most of which would be illegal in the U.K ) especially the split early/mids, the sooner you are on 9-5’s the better.

You will probably find that a routine is going to play a large part of the first few months after the operation. Although I had LDR Brachytherapy I could not do without my morning routine.

BTW it is extremely bad manners to yell at pilots 🤬😂🛫

Rgds

Dave

User
Posted 04 May 2023 at 20:49

I can't see the logic in these medical rules. I wouldn't want an airline pilot with a heart condition sitting up front, but I can't see prostate cancer leading to a medical emergency. 

One of my friends an airline captain was forced in to early retirement due to prostate cancer. Two years later he's still on active surveillance and flying light aircraft for pleasure.

Dave

User
Posted 23 Jun 2023 at 13:10
Pathology post surgery, I was upgraded from T2b to T2c, yet psa remains undectable Perhaps your next appointment the margins will be discussed. It will be the PSA values returned in the blood tests over the coming year/ 18 months that will provide a better view.

Continue healing .

P.

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User
Posted 13 Apr 2023 at 12:23

Welcome to you across the pond, ATC.

I've been diagnosed recently too and it is a shock to the system. This is a great place and I'm sure you'll find lots of support and advice from people more experienced than I am.

All the best

Nick

User
Posted 13 Apr 2023 at 14:10

Well all my cores came back positive with 95% involvement and Gleason 4+5. My PSA was 25. Now five years later, after RT, my PSA is 0.1 . No one knows what the future holds, but you are a long way from death's door.

Dave

User
Posted 13 Apr 2023 at 14:31

Thank you and that is encouraging.  I just scheduled my PET PSMA for May 1 which is the soonest they had available, but told them I'll drop everything and head over if they get an opening last minute.  While I'm not looking forward to the side effects of an RP, I was already mentally preparing myself for it and my focus is being around and healthy for my wife and two young boys so I'm at peace with that.  You can probably guess my career by the screen name and this will definitely impact that.  I guess this kind of things really gives one perspective.

 

On a side note, I had not been to the VA hospital since right after I got out of the military 13 years ago.  They have a pretty bad reputation for quality of care with the public.  I was shocked at how great their service has been.  It's the quickest, most communicative care I have ever received.  When I quizzed them on what equipment they have, they said it's the newest of everything (MRIs, Da Vinci machine, PET PSMA stuff, etc).  Since I served in Iraq, this will all be considered service connected and I shouldn't have to pay a dime.  So at least there's a little bit of a silver lining.

User
Posted 13 Apr 2023 at 14:47

Hi, first thing is to try and get your cup half full. i was diagnosed 2021 (  im 73) ,my PSA was 21.4, with a Gleason of 9 I must admit that i had some scary thoughts, the treatment  i have had from the NHS has been fantastic, i was worried about side effects but they have not been as bad as i thought they would be, i  have had hormone injections and three months of radio therapy, none of it was great but none of it was really bad.

i am now on three monthly hormone jabs and my PSA is now 0.16. do your best to be positive as much as possible.

im sure you will come through it OK.

best wishes

User
Posted 15 Apr 2023 at 23:43

Just a small update. I spoke with one of the urologists yesterday morning and they said 11 of my 20 cores came back positive.  60% of the positive were +3, 35% were +4, and less then 5% were +5 but that was supposedly insignificant?  I asked if all that was the reason the other urologist expressed concern about it possibly being aggressive.  He said he wasn't as worried about that, but that my PSA of 12.6 and young age made him think it WAS aggressive.  He said he unless the PSMA scan indicates it's metastisized, he'd be pushing me for RP.  I said I totally agreed and he could sign me up for asap even before the scan results come back.  I also asked if poor results from the scan would preclude the RP.  He said normally yes, but they do sometimes still do it if they think it could help and somebody at my age and relative fitness would be exactly who they would consider it for.

User
Posted 16 Apr 2023 at 00:31

Thanks for the update. I'm glad cores weren't quite as bad as first thought. I'm also glad you have access to good health care. 

Dave

User
Posted 16 Apr 2023 at 21:14

Sorry to hear you have had to join this forum. I was a civil Air Traffic Controller for over thirty years in Scotland ( en-route as you chaps like to call it😂) I am beginning to create a half baked theory that a lot of air traffic controllers seem to get PCa. I don’t know if it’s the shift work, bad diet or the odd drink to relax.

It could be we are all just getting older.

It certainly was not due to cathode ray tubes as I never worked one in anger, all my equipment was digital.

I was retired when I was diagnosed with cancer ( click on my avatar to see my bio ) although some controllers did get it earlier in life.

I’m sure the FAA will make life easy for you🤔

Just find out as much as you can about your treatment options.

Rgds
Dave🛫

Edited by member 16 Apr 2023 at 21:15  | Reason: Not specified

User
Posted 17 Apr 2023 at 00:53
We did a bit of (not very scientific) data collection on this forum a few years ago - the number of motorbike riders, mechanics and aviation people at the time was really quite staggering. We theorised that there may be something to do with oil or grease?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Apr 2023 at 00:57
I think with a tertiary G5 in the mix, it would make sense to get it all cut out. Unfortunately, PCa does seem to be more aggressive and more persistent in very young men, particularly those in their 30s and early 40s

If you were planning to have children (or to have more children) ask about having your sperm frozen before the op.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Apr 2023 at 14:17

Originally Posted by: Online Community Member
It certainly was not due to cathode ray tubes as I never worked one in anger, all my equipment was digital.

I’m sure the FAA will make life easy for you

I did actually have the opportunity to enjoy the warm yellow glow of CRT scopes from 2002-2009.  Yeay Air Force!!😕

I can sense the sarcasm dripping from the FAA reference.....and I completely agree and expect exactly that unfortunately.  Nice to meet another controller on here!

 

And @LynEyre, I am a bit of a car nut and have bathed elbow deep in greases, oils, and any number of other substances you probably shouldn't.  I do wonder if those eye roll inducing warnings from the state of CA only have a bit of validity now.  The US guberment is of the opinion all the burning of poop in Iraq had finding to do with it.  At least I've already had 2 beautiful little boys ands and much as I love them, I got "fixed" several years ago so no more little ones planned. 

User
Posted 03 May 2023 at 17:50

I have a very positive update; PSMA scan says no metastasis.  Nothing in lymph nodes, bones, seminal vesicles, or anything outside of the prostate from what they could observe.  I haven't gotten the official feedback yet, but the doc called me literally before I had even gotten home from the scan to briefly tell me the results looked good with no spread.  I then went in to my online records and snooped around until I found notes on the subject.  I did note that they referred to my diagnosis as "intermediate risk & high volume disease" for whatever that's worth.

The FAA pulled my medical as soon as they got the biopsy results, but I'm hopeful that after the latest PSMA scan, they will let me go back to yelling at pilots until it's time for the RP.  Then I'll be in the back shuffling papers until I'm pronounced cancer free.

Edited by member 03 May 2023 at 18:17  | Reason: Deleted doctor's name

User
Posted 03 May 2023 at 18:15
Naming doctors is against the forum rules, ATCer - best to edit your post or ask the moderators to do it for you
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 May 2023 at 18:18

I was not aware. Thank you and corrected!  

User
Posted 04 May 2023 at 12:51
Good to see the treatment plan is progressing. I was going to ask if you the FAA would give you a non Ops job. The company I worked for was the biggest ANSP in the U.K and it was part privatised ( I know that is an anathema to to guys in the USA ) however it’s works pretty well ( we always get our monthly pay check, it’s never withheld 🤔😂 )

When we were a 100% government department we had a very good medical branch, now the company has a very good Occupational Health department.

ATCO’s with medical problems were traditionally placed in Documents and Procedures or the training section to develop and run simulations. Generally they were treated well and then were sent back to re-validate on sectors once they got their medical back.

Having seen what sort of shifts you guys work ( most of which would be illegal in the U.K ) especially the split early/mids, the sooner you are on 9-5’s the better.

You will probably find that a routine is going to play a large part of the first few months after the operation. Although I had LDR Brachytherapy I could not do without my morning routine.

BTW it is extremely bad manners to yell at pilots 🤬😂🛫

Rgds

Dave

User
Posted 04 May 2023 at 13:52

Originally Posted by: Online Community Member

BTW it is extremely bad manners to yell at pilots 🤬😂🛫

 

Exactly.  That's why I do it (when earned) 😉😆

User
Posted 04 May 2023 at 20:49

I can't see the logic in these medical rules. I wouldn't want an airline pilot with a heart condition sitting up front, but I can't see prostate cancer leading to a medical emergency. 

One of my friends an airline captain was forced in to early retirement due to prostate cancer. Two years later he's still on active surveillance and flying light aircraft for pleasure.

Dave

User
Posted 05 May 2023 at 06:10
It's because cancer diagnosis makes people do strange things, you don't want an air traffic controller being distracted by the implications of hormone therapy, vacuum pumps and pissing himself!
User
Posted 05 May 2023 at 11:56

Francij1 has the correct interpretation. The UK ( formerly European rules ) medical rules are very strict. The initial examination to get your class 3 medical certificate is very strict, once you have one the renewal is slightly more straightforward. I’m a bit out of touch however there were restrictions that you could not work if you took a lem sip. Air traffic controllers are also subject to random drug and drink tests and some over the counter medicines can affect that. If you wear glasses you must always have a spare pair available.

As I mentioned the Occupational Health department of the biggest UK Air traffic service provider is very good and they usually work from the position of trying to get your medical back.

If you are on any meds you will be offered a non safety critical office position.

There are also not enough spare bodies to give random breaks to let you go to the toilet.The hours worked and break plan is very strictly regulated by law.

It would be interesting if someone brought a vacuum pump into the Radar Room ( just for show and tell, not a practical demo 😳)

With your body awash with cancer/hormone drugs you would probably be a bit unpredictable. It was bad enough when I had to work with unpredictable colleagues who were not on any medication😂

Rgds
Dave

Edited by member 05 May 2023 at 12:12  | Reason: Not specified

User
Posted 22 Jun 2023 at 23:20

Okay, RP completed on 13th.  Almost zero issues with controlling my bladder after removing catheter on 19th.  Things were actually great the day of removing the catheter but have gotten much more sore and flow is very slow.  I also feel like I have to go almost constantly but nothing much is there which I find disconcerting.  Maybe UTI or maybe just sore?  I hope I didn't pop a stitch or something.

So follow up is on there 30th but I have been checking my records and my pathology report just dropped (I don't think they intend me to be able to see it yet but I have found where I can).  I think maybe it's not catastrophic news but not very good either?  Help me decipher it if you could:

 

"DIAGNOSIS

 PROSTATE AND SEMINAL VESICLE, RADICAL PROSTATECTOMY:

 ADENOCARCINOMA, GLEASON GRADE 3+4 (SCORE = 7, 

 GRADE GROUP 3), INVOLVING APPROXIMATELY 15% OF 

 PROSTATE BY VOLUME.

 SEMINAL VESICLES AND VAS DEFERENS UNINVOLVED.

 RIGHT POSTERIOR AND RIGHT ANTERIOR MARGIN POSITIVE.

 PERINEURAL INVASION.

 SEE SYNOPTIC REPORT.

 

 PROSTATE GLAND: RADICAL PROSTATECTOMY

 Procedure: Radical prostatectomy

 Prostate size:

 Weight: 53 g.

 Prostate size: 5.4 x 5.2 x 2.8 cm.

 

 Histologic type: Acinar adenocarcinoma.

 Histologic grade: Grade group 2 (Gleason score 3+4 = 7).

 

 Percentage of pattern 4: 10%

 Cribriform glands: Not identified.

 Treatment effect: No known presurgical therapy

 Tumor quantification:

 Estimated percentage of prostate involved by tumor: 15- 20%

 Extraprostatic extension: Not identified.

 Urinary bladder neck invasion: Not identified.

 Seminal vesicle invasion: Not identified.

 Lymph vascular invasion: Not identified.

 Perineural invasion: Present/identified.

 

 Margin: Invasive carcinoma present at margin.

 Margins involved by invasive carcinoma: Right anterior 

 and right posterior.

 

 Regional lymph nodes: Not applicable

 Distant site: Not applicable

 

 Pathologic stage classification (pTNM, AJCC eighth edition)

 TNM

 pT2: Organ confined

pNx: Not assigned (no nodes submitted or found).

 pMx: Not applicable."

Edited by member 22 Jun 2023 at 23:22  | Reason: Not specified

User
Posted 23 Jun 2023 at 02:16
Hhhmm, a mixed bag. Good news is that there is no cribriform and no mention of the tertiary 5. Bad news is those positive margins on both sides. It will be interesting to see whether your urologist refers you straight to oncology to discuss adjuvant RT or whether they wait to see what happens to your PSA.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Jun 2023 at 12:48

The bit about it being organ confined, no extraprostatic extension, and pT2--is that a favorable finding from pathology, or was that an established fact going in to the RP based on my PSMA scan?  I'm just trying to reconcile organ confined with positive margins meaning something likely escaped.  I just started researching adjuvant RT and resulting reoccurrence rates.  Not super encouraging as I had hopes to be done with this forever 🫤

User
Posted 23 Jun 2023 at 13:10
Pathology post surgery, I was upgraded from T2b to T2c, yet psa remains undectable Perhaps your next appointment the margins will be discussed. It will be the PSA values returned in the blood tests over the coming year/ 18 months that will provide a better view.

Continue healing .

P.

User
Posted 23 Jun 2023 at 16:31

Originally Posted by: Online Community Member

The bit about it being organ confined, no extraprostatic extension, and pT2--is that a favorable finding from pathology, or was that an established fact going in to the RP based on my PSMA scan?  I'm just trying to reconcile organ confined with positive margins meaning something likely escaped.  I just started researching adjuvant RT and resulting reoccurrence rates.  Not super encouraging as I had hopes to be done with this forever 🫤

The organ confined / no EPE / T2 just confirms your diagnosis from the biopsy and scans. 

There are two kinds of positive margin - interior and exterior. An exterior positive margin means that the cancer had broken through the gland covering and can be seen touching or passing the inked / wax edge. An interior positive margin means the surgeon has accidentally left a bit of the prostate behind - a medical error.

Statistics for recurrence are different depending on whether it is an interior or exterior margin. A positive margin does not necessarily mean that some cancer has been left in your body or that you will need further treatment - your PSA results over the next couple of years will tell you. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Jun 2023 at 18:36

Got it, thanks.

I also called them this morning about my discomfort and slow stream.  They suspected UTI and sent me a prescription of antibiotics.  I also mentioned I saw the pathology report.  The PA I spoke with said she heard my 2 main docs talking about me earlier today and heard the one who ran most of my surgery say that something ruptured during the procedure and that could have caused a false positive margin.  Not sure if they are just trying to make me feel better but she said we would talk more about it next Friday so I guess that's possibly encouraging I guess.

 
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