I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Raised PSA fears

User
Posted 13 May 2021 at 08:22

Sad but grateful to be back here asking for support 

Husband Dave 57 year old, 3 years post treatment Brachytherapy, LHRH and Bicalutamide

November 2017 PSA 27, Gleason 4 + 5 = 9,  Grade 5,  T3b spread to seminal vestibules,  Truss showed cancer in all cores.

December 2020 PSA 0.01

Review last week, PSA risen to 3.8. Consultant wants to wait 3 months to repeat, I've done lots of googling and understand there is the question of bounce (after 3 years ?) or relapse and that cancer can be slow growing but still here we are once again SCARED!

Looking for advice and others experience please, thank you Karen 

 

User
Posted 13 May 2021 at 12:58

Sorry to read this, I would ask for a quicker retest if hot were me, say 2 weeks or so. What do others think? Three months seems a long time to wait when a rise like that has been recorded. 

Ido4

User
Posted 13 May 2021 at 17:05
We don't know, that I can see, when hubby came off HT and intermediate PSA results which would be helpful to know.
Barry
User
Posted 13 May 2021 at 17:59

Okay, the fact that PSA has gone above 2.1 is worrying and suggests that there has been a recurrence although it is not absolutely certain yet. There is such a thing as bounce which nay come after any form of RT but 3.8 isn't just a bounce.

After the next PSA in 3 months time, there will be some discussion about potential next steps. Ideally they will offer a decent quality scan to identify where any active cancer clusters are. The skill of a good oncologist is in knowing how long to wait before restarting the hormones - some oncos say when the PSA reaches 5 while others would recommend waiting until it reaches 10 or even higher.

Edited by member 13 May 2021 at 18:00  | Reason: Not specified

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

User
Posted 14 May 2021 at 11:07

Thank you so much for your prompt and responses. I was quite assertive with the clinician, I asked if the delay was covid related, did they have back logs to clear etc. Reassured not at all as a purely cancer hospital and unaffected by covid in terms of waiting lists.

I think we have to wait till July and trust in the consultants expertise and experience, Ive researched him fully and his credentials are reassuring... he's the director of clinical oncology at our cancer hospital with 20 plus years in oncology.

Dave isnt losing weight or suffering back pain or other telltale fighteners, however he is always, always tired, wakes up tired. But not in anyway lazy and gets on with life. We’ve got to do that whole thing again of trying to put it to the back of our minds, focus on enjoying the present and staying positive.

I’m going to revisit this before July to ask for guidance around questions to ask etc ....

Thanks again 

User
Posted 21 Jul 2021 at 16:16

So here we are 3 months on and PSA result today was 12.6. We have our review with the specialist nurse on Friday. Could you help me with questions to ask and procedures to expect. Husband thinks he will go back on hormone therapy. Appreciate any support and I’m strong so don’t hold back. Hoping others have walked this road and can help ? Thank you

He has ulcerative colitis, that is becoming more controlled after restarting infusions. A very healthy appetite, no weight loss, only other niggle is neck shoulder pain but he put that down to work and computer screens all day.

Edited by member 21 Jul 2021 at 16:19  | Reason: Not specified

User
Posted 21 Jul 2021 at 17:15

Sorry to hear how things are. I can't offer much help or advise, hopefully someone else with more experience will.

My main interest in this thread, is that the diagnosis, the time frame, the hospital, the treatment, the age, even his first name, are all pretty much identical to mine. The only difference is I'm about six months behind him. I hope my roll of the dice has been successful, sorry to hear for your OH it hasn't been. 

I guess if I were in his position I would want to know, if a scan can confirm if it is still localised or metastised? If it is localised can any salvage treatment be offered? If it is now advanced, is it better to slow it down early with HT or leave it as long as possible, so QoL is preserved and HT may work for longer before cancer becomes castrate resistant.

Edited by member 21 Jul 2021 at 18:10  | Reason: Not specified

Dave

User
Posted 21 Jul 2021 at 18:23

Hi Karen,

I can see the rise in you Husbands Psa is a worry as it would with all of us.I had my Brachytherpy in 2016 with different numbers and it took coming up to five years to get my Psa down to 0.08 as it is at the moment and next Psa in September but i did not have a bounce in that time maybe because it has taken five years to drop.

I think three months is a long time if like me you are a worrier so maybe ask if you could have a earlier Psa test as it is only a blood test and doesn't tie the health up too much.

Regards John.

 

User
Posted 21 Jul 2021 at 19:02
Your husband is correct in thinking that the most likely treatment is that he'll go back on HT. That's the standard treatment in these circumstances.

Best wishes,

Chris

User
Posted 21 Jul 2021 at 22:35
That is a rapid rise - I would be pushing for a PET scan to see whether the recurrence is in the prostate bed or furthercafield. Next steps depend on the results but restarting HT is almost certain as the doubling time is around 7 weeks and it needs to be slowed down as quickly as possible. If they talk about early chemo, don't rule it out without careful consideration.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Jul 2021 at 23:02

Thank you Lyn for such a helpful response. Can I ask why particularly PET, so I have my argument ready and also can I ask why some might be unsure about Chemo, my thinking was probably naively that it has been saved for this scenario and I would be hoping they will throw everything at it now, why would there be reluctance, because it’s so debilitating ? Also prostate bed ? Not heard that term before. 
Hope you don’t mind all these questions 

User
Posted 22 Jul 2021 at 00:16

A PET scan may pick up active cancer clusters wherever they are ... prostate bed, lymph, soft organs or bone. There are a number of different tracers used now in the UK for PET scanning; choline was the bees knees until recently but has been overtaken by Gallium, F18, 18F among others. You will hear some of these referred to as PSMA scans.

The prostate bed is a common place for recurrence; either cells left behind after surgery or new tumours in an irradiated prostate. Prostate bed just means the space where the prostate is/was and immediately around that space. 

Until fairly recently, chemo was only offered at the end stage because chemo doesn't kill prostate cancer. More recently it has been realised that chemo given early can make the hormones much more effective for longer. Many oncos are up with the game and will offer it if they think appropriate but there are still some old fashioned practitioners out there who seem unaware of the research. Why would some men resist? It is a dangerous treatment - most men seem to cope very well with docetaxel (the most common prostate cancer chemo) but like any chemotherapy, an infection can kill so important to monitor temperature, stay away from the public at key times, etc. For obvious reasons, chemo is more dangerous during a pandemic and some hospitals have simply not offered it. NICE has approved an alternative to chemo during the pandemic so that may also be part of your conversation with the onco.

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

User
Posted 22 Jul 2021 at 08:21

Well I couldn’t ask for more help than that. So very grateful to you all but particularly to you Lynn. I feel armed with all the necessary questions and ready to assert our needs if they aren’t forthcoming. I will update the thread this weekend. Sending my very best wishes to you all, thank you.

User
Posted 25 Jul 2021 at 07:40

Just to follow up we are now waiting for bone and CT scan (I asked why not PET and can’t remember why it’s a no) and repeat bloods and then appt with oncologist so by my thinking we will be in the dark for at least another month. 
Husband bought a new bike and has put some miles in the last few months. Apparently the seat aggravates the prostate, could explain things … grasping at straws maybe … hey ho ! 
Thank you your support. I’ll update once we have some results.

User
Posted 25 Jul 2021 at 10:28
Serious cycling can lead to a small temporary rise in PSA but it is thought to be less than 10%, research shows that it falls back to normal levels within a few hours and it would only happen in a man who still has a prostate.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Jul 2021 at 06:46

From a consultant family friend Lynn. Let’s face it you mention prostate cancer and everyone’s a bloomin expert. The number of people who’ve said my dad, brother, Uncle Tom Dick and Harry has had it and they’re ok ! Youve got to laugh. 

 

User
Posted 12 Aug 2021 at 09:18

We went for Dave's CT and Bone scan results on Tuesday and were told it is now in his pelvic bone. They showed us the scan and there it was a black blob. Only one blob, but a blob non the less. Advised to get back on hormone therapy which will be lifelong and then other fun things will be introduced when it stops working. 

We were kind of prepared for bad news and it could have been worse, hate that response but its true. We didnt cry and we are people who cry, the consultant mentioned 5 years but probably not 10 I think … it gets a bit blurry and the next minute they leave, your bloods get done, you pick up your drugs and its over and you know.

Appreciate anything you’ve got folks, not miracles or pity just your knowingness I guess as its a well trodden path I’m sure.

Thanks Karen

User
Posted 12 Aug 2021 at 11:31
Sorry to hear your news, Karen. Your consultant is perhaps being rather pessimistic; there are quite a few members here who are still around more than 10 years after a diagnosis of advanced prostate cancer. Survival rates, by their very nature, are based on historic treatments. Prostate cancer is a field where new treatments are constantly becoming available, and survival rates now are vastly better than they were 20 or 30 years ago.

Very best wishes,

Chris

User
Posted 12 Aug 2021 at 11:38

Hi Karen

I echo what Chris says, we were told 5 years when diagnosed wirh advanced prostate cancer in 2019.

But I have heard of people doing much better with at least one chap diagnosed 10 years ago and only just added enzalutamide to the  hormone therapy. 

It's very upsetting to hear a timescale as you can't help thinking about it, but really everyone is different, some will do better and others not.

Wish you all the best. 

Edited by member 12 Aug 2021 at 11:39  | Reason: Not specified

Mrs MAS

User
Posted 12 Aug 2021 at 14:21
Next time you have an oncology consultation, you might consider asking the doctor if it’s OK to record the conversation on your phone, so you don’t miss anything that was said.

Best of luck.

Cheers, John.

User
Posted 12 Aug 2021 at 16:13

been talking to a lovely chap at my local hospital who was given a 5year timescale with advanced prostate cancer in 2004 with new treatment is still looking well and just booked a cruise to America.    treatment getting better all the time keep positive. 👍

User
Posted 14 Aug 2021 at 19:43

Thank you all for your responses and kindness. Looking forward to the PSA numbers going down and we’re just staying in the present as much as possible. Daves rejoined the gym, anticipating hormone treatment wreaking havoc with his weight etc and hes cycling around 60 miles a week so all that helps his head/mental health. It would be nice to plan a lovely holiday, maybe in the New Year the whole covid travel thing will be easier 🤞

Best Wishes to all, Karen 

 
Forum Jump  
©2021 Prostate Cancer UK