Post RP and SRT journey - July 3023 PSA test update - - Page 5Localised cancer

User

Posted 26 Oct 2018 at 17:13

Thanks all

I suspected this may be the case. My Fitbit showed a significantly raised resting heart rate during the treatment period so I can see it had a measurable effect on me.

I just need to look after myself and move on.

Ian - I have a four week course booked starting in November similar to yours. it wil be useful as I have little niggling feelings like "am I strong enough to deal with what is to come?"

Press on...

User

Posted 05 Nov 2018 at 08:57

Still struggling a bit with the brain cells.

Week one was depression and week two was what I call biochemical anxiety in that I wasn't emotionally anxious on the surface but my brain had the wearisome symptoms dialled up to 11.

I noticed that my armpits were starting to smell a bit after exercise which suggests I am returning to (a new) normal. I wonder - as It is three months since the HT jab are there withdrawal side effects that can impact mental states?

I've also dropped my anxiety meds from 100 to 50 mg as they were giving me bad side effects at that dosage. I wonder if it systemic and cumulative withdrawal?

Press on...

User

Posted 05 Nov 2018 at 09:32

When are you starting the Maggie’s course PP?

I can relate to the keeping a brave front look but deep inside the mind is in overdrive.

It will be interesting to see how things go now you are off HT.

i will be having last HT jab 3/1/19 so will be a few months behind.

Hopefully others will come along with their experience. Lyn’s John came off HT but not sure how long he was on it.

I'm sure Lyn will update you.

Ian

Ido4

User

Posted 05 Nov 2018 at 10:14

Hi Ian

I start the course on Monday. Four Monday evening sessions in a row. Should be useful.

Yes, I am looking forward to being off HT. I read an interesting article today that says men are choosing QOL even if it adds risk. Not sure I will go that far but I will be damn glad when the side effects wear off.

One issue is that I am in a quandary - I need some decent time to myself (whilst not being zapped) before going back to work (it has been a very very hard last two years with PCa plus some very challenging jobs) and I have enough cash to do so but I feel guilty doing so and I know my OH worries about this. I think this is a big stressor.

Press on...

User

Posted 05 Nov 2018 at 12:15

I’m STILL on the QOL only route and am 3 1/2 yrs post op. Mentally it will always be tough , but I’m totally recovered from the surgery and have refused any further treatment until they actually see something somewhere. I’m G9T4 N1M0.

I’ve been living life to the full as well as working. Loads of treats and holidays for everyone and plenty of date nights for me and Mrs as everything is working and I’ve DREADED losing it. It might tip me over the edge tbh. Psa expected over 100 in January and maybe scans. Running the gauntlet but making the most of every day. I feel more scared of not living than the certainty of dying of this disease.

User

Posted 17 Nov 2018 at 12:10

I did not want to hijack another thread so here is something on micious adenocarcinoma which I have.

Half of my biopsy (3% volume) was mucinous. I have to be honest and say this scared the ship out of me but the studies are confusing but there appears to be some light at the end of the tunnel.

The list below suggests that it may not be as bad as first thought and that it is Gleason score at diagnosis and staging that are the key factors.

That being said, I feel quite angry that neither my urologist or oncologist saw fit to mention the potential risks associated with this. They have me flagged as a professional worrier so I wonder if they withheld this deliberately?

Worst case I have a variant that does not respond to HT or RT. Best case I am in the same boat as everyone else

Links removed - a bad idea including them - I am really sorry about that.

A lot of the time I feel like the tunnel is bricked up :(

Edited by member 19 Nov 2018 at 20:59 | Reason: Not specified

User

Posted 17 Nov 2018 at 13:22

I think there is a difference between a) majority mucinous and b) elects of mucinous in a majorly adenocarcinoma. Majority mucinous gives off little PSA so is likely to be diagnosed very late, often when bone mets lead to fractures or SCC. Majority adenocarcinoma with elements of mucinous give off PSA and have more chance of being diagnosed with curative options. Also, if mucinous PCa is missed at diagnosis and the man opts for radical RT/HT his outcomes may be very poor whereas a man with undiagnosed mucinous events who opts for radical RP will probably do just as well as if he had pure adeno.

In your case, the mucinous element was very small and did not prevent you from being diagnosed at a point where curative action was still a possibility; the fact that it was spotted at all allowed the medics to plan for it. So in theory, your outcome should be no different to a man with pure adeno.

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

User

Posted 17 Nov 2018 at 13:42

Lynn

Thank you.

I was Dx with 50/50 at 3% tumour volume (G7 4+3 as you know) with PSA of 4. This suggests that although prevalent it is not the majority. The 50/50 thing follows an annoying trend in my life - things that may or may not bite me in the Khyber are never black and white.

I am confused as to why they never mentioned it but I guess I can ask the question next time I meet.

It is a bit rough at the moment - both me and my wife are at that "it's been a rough road" stage and it does not take me much to wobble as you can see here. The hardest thing is learning to keep the wobbles internal to protect my family. Sadly I am not brilliant at that.

On a lighter note, thank you for your advise and support. I envisage you in a secret base somewhere like Bruce Wayne in his batcave checking a wall of forum topic monitors and diving in to help where needed Same thanks goes to all the other folks who have helped me too!

A wobbly Pete

User

Posted 17 Nov 2018 at 20:23

I wobble. The only people I know who don't wobble are my husband and my dad!

Not sure that your family need 'protecting' - I am sure they know that you are only human.

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

User

Posted 17 Nov 2018 at 20:41

Hi Lynn

You are right - I set very high expectations of myself which I know is not good. Unfortunately I have to deal with a lot of baggage on top of PCa and it affects how I react. Oddly I react worse to facing unknowns than facing death.

Still this link below makes things sound better. In 2014 the US decided that mucinous was the same as adeno and was to be graded according to pathology not getting a 4 + 4 by the mere fact that it is mucinous. Just going to have to ride this bad boy out I guess.

http://www.cdha.nshealth.ca/system/files/sites/116/documents/prostate-cancer-grading-2014-isup-concensus-conference.pdf

Edited by member 17 Nov 2018 at 21:41 | Reason: Not specified

User

Posted 18 Nov 2018 at 09:57

Further digging also suggests that mucinous by itself is not so bad but mucinous + signet cell/ring is very bad. My post RP path mentioned mucinous but not signet cell (there have only ever been 11 cases reported so I am sure they would be telling me!) so applying some CBT logical thinking:

I have a G7 (4+3) found early and BCR was found and treated early

My tumour volume was low (3%)

Mucinous was reported on my path report (not as a majority) but not signet (I have to assume they would report if it was there)

My onco did not raise any concerns at my review about very high risk levels (I have to assume he would be duty bound to do so)

Mucinous is now treated as per regular grading

Reports on the effectiveness of RT/HT are mixed but seem to be much worse for MC+SC/SR

Reportrs suggest that RP as an intial treatment for MC is good

All reports suggesting a poor outcome for mucinous are old(er)

Most if not all recent reports suggest mucinious is no worse than regular

Some recent reports suggest mucinous by itself may have better outcomes

Probably more....

Given that I have to asssume that my uncertainties are no better or worse than anyone else in my boat so I need to stop overthinking, shut up wittering and get on with recovery

User

Posted 19 Nov 2018 at 18:08

Having read a lot of the links I started reading about the intraductal cancer I had in my prostate in addition to the adenocarcinoma (“normal” or most common PC).

It didn’t make for good reading. I’m going to stop looking and try and deal with things as they happen rather than the what ifs. Easier said than done.....

A feeling low and shaky Ido4.

Ido4

User

Posted 19 Nov 2018 at 20:41

Damn

Sorry Ian - I didn't mean to set you off worrying. I'm just trying to get my head around my own situation not make anyone else worse.

Really sorry about that.

User

Posted 19 Nov 2018 at 22:00

Please don’t apologise. You didn’t set me off, I did it all by myself. It’s really difficult to get your head around this shjjty disease.

We’re all in the same boat. I’ve been out at community choir, that took my mind of things.

If we can’t vent here or try to articulate how we are feeling on this forum then that’s a sad day.

Carpe diem,

Ian

Ido4

User

Posted 19 Nov 2018 at 22:14

Ian

I appreciate that - I felt really guilty (still do a bit but that is my problem not yours ). Glad you enjoyed your choir. So do the three tenors have competition from you?

What I realised is that I have been circling the drain on this issue so earlier tonight I broached it with the radiotherapy nurse specialist hosting the cancer survivors course I am on (HOPE course is a great course by the way) and she said they would not hold things back unless they thought I would top myself and might not mention things if they thought them not important. She said she would get my onco nurse specialists to ring me tomorrow.

It made me realise I have been nervous about contacting them as I felt I was wasting their time / felt intimidated. I now know it was better all round to bite the bullet.

Anyway, feel free to vent or PM me if you need to let off steam.

Positive vibes sent your way.

User

Posted 20 Nov 2018 at 08:37

The last few days have made me realise that over-digging into the science actually causes more harm than good. Getting so much information from so many sources is overwhelming and stressful. I think it is also a form of avoidance behavoir in my case (avoiding contacting the hospital).

I have addressed that by requesting a chat with my uro onco nurse to hash it all out and draw a line under it. After that I'll try and focus solely on wellness.

I'm not comfortable with this approach but that probably means it is the right one. I'll try and keep my posts on wellness and general questions and sending good vibes other people's way from now on.

Wish me luck.

User

Posted 20 Nov 2018 at 15:33

It does get easier eventually. At the beginning of my journey my wife and I explored the death out of the disease and treatments. The PCUK leaflets were a life saver. But yes whilst we got very wise we also got very scared , to the extent I delayed a decision a good while which may have led me to being in the situation I’m in now. I had a full breakdown in hospital and ended up 14 nights in , instead of the one or two as expected. They know I’m bipolar and very on the edge in general and I think whilst they despair me not even trying SRT , they totally get that it’s MY cancer and my decision and they know QOL was ultimate to me. I’m very much thinking they may hold some things from me that aren’t relevant , for instance I can’t believe my liver tests are fine all the time as I’m consuming well over the weekly allowance these days with the stress of it all. My rock has been Southampton hospitals PCa specialist nurses. They are worked off their feet but are always there to chat and discuss and even hold your hand and listen to how you actually feel. Despite my incurable predicament and wondering where my mets are , they actually left me six months this time because 3 monthly was wrecking my life , my relationships , and general well being. January is going to be a big decider. I’d be a liar if I said the fear wasn’t mounting again , but generally I stow it and just want to enjoy Xmas mostly. Good luck to all

User

Posted 21 Nov 2018 at 09:38

Morning everyone,

For me personally, distraction helps, but not always. I had one of my grandchildren stay overnight on Monday and right in the middle of fun and laughter (I was Spiderman v his Ironman) I had a strong feeling of melancholy sweep through me, you'll all understand it, will I see him become a teenager ? an adult ? Anyway...I let Ironman win ! Another kind of reaction happened a week or so ago whist watching a Man City game. I always look for Brian Kidd, one of the team coaches who was treated for PCa back in 2004, and when I see him I'm always boosted somewhat..but, he wasn't there and I even had a pang of low level panic !! Just look what this disease does to us. As I write, I'm looking out at very miserable, bleak day, the type that can bring people down a good few notches, but I know that I'll feel different when I've been to the gym, have my lunch out, then have a pint with a few of the lads in the pub. None of these fellow pub goers know about my cancer nor would they ever be able to tell with my happy demeanour in the boozer. I prefer it that way as I need certain areas of life to be a PCa free zone. I'm seriously considering driving for a local charity transport service that takes people for treatment to Sheffield, one that I used for SRT and was absolutely invaluable. Now, I know this sounds contradictory after writing the above except that I believe helping others and being proactive helps a lot, something you as contributors on this site will understand. Take care all and lets keep trying to ride that wave.

Paul

User

Posted 21 Nov 2018 at 11:45

Hi all

Thanks for the kind words. I appreciate them. I do need to get that separation of time away from the disease I think.

One last update on the main issue before I close down this topic.

I had a chat with the very kind and helpful rad onco specialist nurse just now and she was very good at helping me ease my worries.

She said that the pathologist who did my prostate is know for getting interested and working late over anything out of the ordinary and flagging it up. That did not happen which is good.

She also said that anything small cell or signet ring related would have been called out.

I had one larger 4+3 and one smaller 3+3 tumour.

She said she would email me the path report. The fact that she is doing this when she knows I am a worrier is probably also a good sign :)

There was some confusion over the relative volume - the GP letter said 3% and the path report said (I think nearer 10%).

She did admit that she had never come across mucinius but had looked up the same research as me and could see where I was coming from with the more recent better news. She had come across signet ring patients and they had all had their risk factors made clear to them up front. I did not have that.

She said basically I have to see what happens. I think from this I can assume that I am in the same boat as everyone else in terms of my diagnosis.

What this means is that I am going to try put this aside and take the advice of the kind peeps who just posted and start looking at the positive things in life.

Thanks all for your patience with my wobbles.

Edited by member 21 Nov 2018 at 11:47 | Reason: Not specified

User

Posted 30 Nov 2018 at 12:38

Hi all

I got my path report today with the prescription form.

Interesting reading.

Prostate 34g
Tumour type microacinar adenocarcinoma with 50% mucinous
Largest tumour 1.13 cc 4 + 3 grade group 3
Secondary tumour 0.14 cc 3 + 3 grade group 1
PNI yes
Extraprostatic PNI no
Vascular invasion no
Extraprostatic invasion no
Seminal invasion no
All margins clear
High grade PIN
Other comments large focus of cribiform (edit - some sites mention invasive cribriform but my report just said cribriform)
Conclusion - RP
Final rating 4 + 3 grade group 3 pT2 pN0 Margin negative

Only thing of note is the cribiform which was made as a passing note.

I've only seen one reference in the forum which confirms my quick check that it is defaults to G4, is aggressive and can spread so fast action is needed. Some reports suggest it is an indication of existing mets.

I talked to the nurse specialist just now and we both agree that all possible action has been done.

I guess I just wanted to add this information to see if anyone else can comment on whether the cribrform is something to keep an eye pn.

Edited by member 30 Nov 2018 at 12:42 | Reason: Not specified

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