What does this all mean?

User

Posted 05 Sep 2018 at 23:31

My Dad is 69 years old, had a blood test 2 weeks ago at his GP and had a PSA score of 51. Based on this his Dr and Urologist he met with last Thursday informed him that it is most likely PC. During the visit with the urologist they took more blood tests and also a biopsy of the prostate, which has left my Dad suffering with blood in his urine, severe constipation and taking antibiotics on and off for almost a week. During his visit on Thursday he was booked in for an MRI scan tomorrow and a follow up appointment on 19th September to (I assume) get all test results, his glieson score and discuss possible treatments. I say 'I assume' because my dad is dyslexic and not the best communicator/retainer of information and my mum suffers with mental health issues which also makes it hard for her to communicate effectively. So my assumptions are based on the information they have given as well as research I've done on this and other sites. On Mondayy dad received a call, which my mum took, saying that he had been booked in for another appointment this Friday but the reason for the apointment/venue was not confirmed however that a letter would be sent confirming everything. Based on the fact that blood tests and a biopsy have been carried out and an MRI is taking place tomorrow does have any idea what the Friday appointment could be, such as another test that might need to be done? Do the steps that my dad has gone through so far and the speed that everything has happened so far seem unusual to anyone? Any thoughts/advice that can provide would be so greatly appreciated. Thank you so much to anyone who has taken the time to read this post. Kind regards, steve

User

Posted 16 Sep 2018 at 19:36

Hi Steve,

I know the “what ifs” are very difficult but you can’t start to deal with them until you have all the info from tests and scans. It’s great news that everything is being carried out quickly for your dad.

I was diagnosed with PC just over two years ago with a Gleason of 9 and a PSA of a little higher than your dad of 67.

My cancer had spread to my bones but two years down the line after chemotherapy and on lifelong hormone therapy I still have and always will have cancer but you wouldn’t know there was anything wrong with me.

I hope this can reassure you a bit. It’s great that you are supporting your dad and attending appointments with him.

Take care

Dave

User

Posted 21 Sep 2018 at 13:05

Hi Steve,

I’ll give you a rundown of how my procedures/schedule went with chemotherapy. I completed it 18 months ago but if your dad is being offered Docetaxel I don’t expect much has changed although it might be worth mentioning different hospitals will no doubt differ slightly.

The Docetaxel is given from a drip through a cannula inserted into the back of the hand. There are also other drugs involved in these procedures. Steroids are given to take the day before and the morning of each cycle then before the chemotherapy is administered more steroids and an anti-sickness drug are put through the drip. The whole procedure takes several hours (mine in general were around four hours) so a good book, earphones & music or iPad are all a good idea. All this isn’t as daunting as it seems. I actually found it quite relaxing once “the scared out of my wits with what was wrong with me and what was happening to me” wore off. The nursing staff, although extremely busy couldn’t have been more kind or friendly. There was actual tears when I went to say goodbye after my last cycle!

As well as the chemotherapy your dad will be given a different steroid to take everyday throughout the treatment cycles. These help with the side effects and also help fight the cancer. On top of that there will be anti-sickness tablets to take when required. Sickness and nausea are side effects; I took them for the first few days of each cycle just to be on the safe side but although had bouts of retching I was never sick.

Here are some of the side effect associated with chemotherapy - nobody gets them all. The main thing to watch out for is any sign of high temperature and infection as this can be particularly dangerous during the times the white blood cells count is right down. Your dad will be told when the “at risk” periods are and will be given a card to carry. I got into the habit of taking my temperature regularly even though I felt ok. If he still has his own hair then that and any body hair will thin a fair bit but probably not all disappear. Mine went pure white as well! A metallic taste will almost certainly develop but usually goes away after the first 10 days or so only to return after the next session. Nails can be effected by a change in colour and forming ridges. Bouts of fatigue are almost inevitable but some people fare better than others - this is also true of all side effects. The best thing to do with fatigue is just give into it. It’s nothing like being just a bit tired and you really can’t fight it. I know I will have missed things but get back with any questions at any time.
On a lighter note the steroids can have side effects as well. Although I was always tired and slow to get started in the mornings I was literally bouncing with energy by late afternoon. One of my sons suggested my wife would need tranquillisers to cope! 😀😀

Edited by member 21 Sep 2018 at 17:43 | Reason: Not specified

User

Posted 22 Sep 2018 at 13:32

Thanks Lyn,

That makes sense but I find it odd that Steve cannot reply to a message I have sent him though!

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User

Posted 06 Sep 2018 at 00:43

Hospitals have targets that they have to meet - if someone is referred with suspected cancer and it is turns out to be, they have to start treatment within 30 days of the referral. So it sounds like your dad lives in an area where the referral pathway is really well managed.

The appointment might be for a bone scan. Some hospitals do a bone scan for all newly diagnosed men while others only do it if they have reason to think the cancer might have spread. It might be that this is routine in your dad's area.

The blood in his urine may last for a couple of weeks - he may have blood in his ejaculate for longer.

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

User

Posted 06 Sep 2018 at 08:35

Hi Lynn,

Thank you for taking the time to reply and the information provided, its really helpful. Hopefully the appointment on Friday is for another test and not to confirm that the cancer has spread.

The new about my Dad is very new and has hit all of us for 6 but I have found reading through other people's stories on here to be very informative/inspirational/comforting.

I will continue to post about my dad and keep up with other stories as I feel it is vital in a lot of ways.

Many thanks,

Steve

User

Posted 06 Sep 2018 at 16:46

The appointment for tomorrow is a bone scan, I am impressed and grateful with how fast things seem to be moving.

Fingers crossed for some positive news on the 19th September!

Many thanks,

Steve

User

Posted 16 Sep 2018 at 19:20

Hi everyone,

There's no updates, all results still due to be given in appointment on the 19th, but I'm starting to freak out a bit.

My dad has asked me to go with him to the appointment on Wednesday which I'm happy to do to support him and also get the whole story. I've been feeling positive about everything after all that I've read here and on the NHS website and speaking to people who've been affected by PC, I understand what the potential treatments are and how (hopefully) dad might be one of the many who live with this disease. The weight of the news he will potentially receive on Wednesday is dawning on me though, all the 'what ifs' are swirling around my head and I'm scared.

I'm generally a glass half full type of person and my dad has a strong faith and is a very patient person so he's taking everything in his stride and remaining calm but what if... Its extremely bad news, its spread, its terminal, there's nothing they can do?! I know how irrational those thoughts are but they're happening right now and they're quite strong.

Many thanks,

Steve

User

Posted 16 Sep 2018 at 19:36

Hi Steve,

I was diagnosed with PC just over two years ago with a Gleason of 9 and a PSA of a little higher than your dad of 67.

I hope this can reassure you a bit. It’s great that you are supporting your dad and attending appointments with him.

Take care

Dave

User

Posted 16 Sep 2018 at 21:55

Hi Dave,

Thank you for your message and reassuring words. You're completely right I know and I have calmed down now it just all seemed to build up there for a bit. Bring on Wednesday is all I can say!

Your story is very reassuring and inspirational and I'm glad to hear how well you are doing.

Many thanks again.

Steve

User

Posted 17 Sep 2018 at 10:05

Although it is two years since I started treatment and things change all the time (and with location) I’ll be happy to pass on any info you may find useful when your dad’s situation and treatment plan becomes clearer.

Dave

User

Posted 19 Sep 2018 at 20:12

Hi everyone,

Firstly Dave, thank you for your last message and I certainly will take you up on that,much appreciated.

So Dad's gleason score is 7 but he has a very aggressive form of PC which has caused the high PSA of 51 and it to spread to his spine, pelvis and lymph glands. They started him on hormone medication today, he has a 3 week course of them and will receive a hormone injection in 2 weeks, another one month later and then every 3 months. He has also been referred to the oncologist who he will see in the next few weeks and the nurse and Dr we saw today said to not be surprised if the oncologist suggests chemotherapy. They also said that because of the aggressive nature of the PC it will be monitored closer than perhaps it would for a typical patient with a gleason of 7.

The other main takeaway was that it is very treatable, manageable and won't stop dad from living his life normally.

Me and dad both came out feeling positive about the news and the treatment, especially the fact that we picked up the meds there and then and dad had taken his first one before we left the car park. Dad's got a strong faith which is helping deal with everything and he summed it up by saying 'it's just a new part of my life that I need to make room for'... I would be delighted to hear from anyone who has any thoughts on the above info and what dad was told, if they've received similar diagnosis and how things progressed when treatment started. Many thanks for reading. Steve

User

Posted 20 Sep 2018 at 00:01

Chemotherapy is now offered soon after Hormone Therapy starts. This used to happen when hormone therapy started to fail but during trails it was discover that if given early then it helped hormone therapy to work for longer and help prolong survivability. This is given as six cycles of Docetaxel, one every three weeks. There are side effects with chemotherapy but I don’t want to jump the gun as these will all be fully explained at the time. I can of course give that info if you’d rather know sooner.

Dave

User

Posted 20 Sep 2018 at 10:21

Just an addition to my above post. Your dad looks as if he’s going to be on a similar if not the same treatment as me. Take a look at my profile - it’s not exactly detailed - but is up to date.

Dave

User

Posted 20 Sep 2018 at 13:16

Hi Dave,

Thank you for your messages.

I have taken a look at your profile and it has definitely been helpful.

If you could possibly provide me with some information about the chemotherapy that would be amazing.

Many thanks,

Steve

User

Posted 20 Sep 2018 at 22:45

Just to let you know I’ve seen your latest message. I’ll send you some details tomorrow.

Dave

User

Posted 21 Sep 2018 at 13:05

Hi Steve,

Edited by member 21 Sep 2018 at 17:43 | Reason: Not specified

User

Posted 21 Sep 2018 at 19:46

Hi Dave,

Thank you so much for all of this information.

I spoke to my dad today and the gravity of the situation is starting to hit him and he's feeling a bit scared and I think he'd like to speak to someone who has had PC. I mentioned that I'd been communicating with you on here and he asked if you might be willing to speak with him on the phone perhaps please?

I just tried to private message you but because I'm new I'm unable to do this yet. Would it be something you might be open to?

If so and you would be willing to arrange something my email address is Stevepdoyle68@gmail.com

Many thanks,

Steve

User

Posted 21 Sep 2018 at 20:47

Hi Steve,

Have sent you a direct message. If you have any issues retrieving it just let me know and I’ll send it by email.

Dave

User

Posted 22 Sep 2018 at 00:22

Hi Dave,

Thank you for your message, unfortunately I'm unable to reply as the site won't allow it.

I understand everything you said in the message and appreciate where you are coming from.

If you are happy to, please could you send me your number via a private message and I can then drop you a text to arrange a convenient time for a call?

Many thanks,

Steve

User

Posted 22 Sep 2018 at 09:45

Have sent another PM and also contacted the moderators.

Dave

User

Posted 22 Sep 2018 at 13:20

If you make another couple of posts you will magically find you are allowed to send PMs. It is a safety feature to stop people joining the forum and then immediately sending spam to members.

Edited by member 22 Sep 2018 at 13:20 | Reason: Not specified

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

User

Posted 22 Sep 2018 at 13:32

Thanks Lyn,

That makes sense but I find it odd that Steve cannot reply to a message I have sent him though!

User

Posted 23 Sep 2018 at 08:39

Hi Dave,

Thank you for the other messages you ent through to me. I dropped you a text yesterday afternoon, hopefully you received it. I'm still unable to reply to your private message unfortunately.

Many thanks,

Steve

User

Posted 23 Sep 2018 at 09:37

Awfully sorry Steve. I’ve only just noticed I had finger trouble with number. The last digit should be a 2.

Sorry

Dave

User

Posted 24 Sep 2018 at 12:44

Hi Steve,

I’ve just had a message back from Carol, one of the administrators. I’d asked about you not being able to respond to my private messages. The reason, as Lyn quite rightly pointed out, is to protect genuine members receiving spam. Carol has checked the thread and tells me that you have either just reached the threshold or another post should do it.

Dave

User

Posted 26 Sep 2018 at 13:29

Hi Dave,

Thanks for this, your text and private message. It's all very greatly appreciated.

Hopefully I will be able to message you back soon.

I will certainly keep yourself and everybody else updated on how dad is doing.

Many thanks,

Steve

User

Posted 27 Sep 2018 at 18:03

Hi Steve,

Just sent another PM

Dave

User

Posted 27 Sep 2018 at 18:29

Hi Dave

Just read your chemo advice for Steve's dad which was very helpful for me as well as I'm about to embark on the first of my 6 Chemo sessions on Monday 1/10.

Many thanks

John

User

Posted 27 Sep 2018 at 20:08

Hi John,

Glad it was of some help. You start exactly two years after my first cycle!

Dave

User

Posted 08 Oct 2018 at 22:25

Hello everyone,

Just an update regarding my Dad.

He had his appointment with the oncologist today which mainly focused on the recommendation to start Chemotherapy treatment. The oncologist broke down the reasons why chemotherapy is recommended at this stage, how the process will work and all potential side effects involved, possible infection being highlighted as one to be mindful of especially.

Dad consented to the chemotherapy today and will receive a phone call in a week or so to book in the first of cycles 2/3 weeks after that. My dad is very scared about having chemo, the impact it will have on him and how it will affect his life so he is actually still debating about whether to have it or not. I think/hope he will go ahead with it.

One of the big things that I took away from the appointment today was the Dr saying that the average life expectancy after diagnosis of metasticised PC is 3-5 years and that early use of chemotherapy can extend this by up to 15 months. I already knew the average benefit of chemo but the average life expectancy did come as a bit of a shock. I know that there are people who have lived much longer than that with PC and it is only an average number but just hearing that struck a strong chord with me.

I hope everyone else out there is doing well and enjoying life as much as possible.

Many thanks for reading and as always any thoughts/feedback/comments are greatly appreciated.

Take care,

Steve

User

Posted 08 Oct 2018 at 22:26

Hi John,

How is everything going after your first cycle of chemo? Are you keeping well?

Steve

User

Posted 09 Oct 2018 at 07:29

Hi Steve,

Just a quick one for now as am still lazing in the sunshine in Cyprus!

That average figure that shocked you scared the hell out of me when I read the results of the STAMPEDE trial that resulted in the recommendation of early chemotherapy. That figure doesn’t take into account the men with prostate cancer who would be/are still alive after the five year period anyway. I hope you can make sense of that.

I’ll send you a longer message in a couple of days but for now - Paul told me he was reasonably fit and healthy so that puts him in at a good starting point for chemotherapy.

Take care

Dave

User

Posted 10 Oct 2018 at 00:23

Hi Dave,

Thank you for your message and reassurance. I look forward to hearing more from you.

Enkoy the rest of your holiday and speak soon.

Many thanks,

Steve

User

Posted 18 Oct 2018 at 17:56

Hi everyone,

Just another update, dad's first chemo cycle has been booked in for Monday 29th October.

Many thanks,

Steve

User

Posted 07 Nov 2018 at 10:00

Hi Steve,

How is your dad doing after his first chemotherapy cycle? That will be just over a week now won’t it? I didn’t want to ring him in case he’s feeling rough.

I had my usual three monthly check up yesterday. After my PSA being undetectable for around a year now it was still below 0.1 but detectable three month ago and now is at 0.2. There could be several reasons why but my consultant tells me that he’s not the slightest bit concerned and nor should I be. As he is one of the country’s leading authorities on prostate cancer I’m happy with that.

As I said to your dad last time we spoke I’m happy to hear from him anytime.

Cheers

Dave

User

Posted 08 Nov 2018 at 16:12

Hi Dave,

Thanks or the message. Dad's struggled with the side effects after his first cycle of chemo. He was in hospital for a couple of days last week. He's at the 10 day mark now so is starting to feel better.

If you have a chance to drop him a line in te next couple of days I think he'd really appreciate it.

Thank you for sharing your news and I'm glad to hear that your Dr is positive about your results. Let's hope it stays that way as long as possible going forwards!

Many thanks,

Steve

User

Posted 08 Nov 2018 at 17:30

Hi Steve,

Sorry to hear your dad hasn’t been well. My first cycle saw me at the out of hours doctors resulting in antibiotics and specialist oral gels and mouthwash. One of my sons reckoned my tongue looked like something out of Alien! That was quite unpleasant but nowhere near bad enough to be hospitalised.

I’ll certainly drop your dad a line. What’s going to be the best way to contact him? Probably best if let me know that via PM.

Dave

User

Posted 09 Dec 2018 at 22:45

Hello everyone,

I just wanted to pop the latest update of my dad's treatment to this thread.

My dad has had one course chemotherapy which was at the end of October which unfortunately he suffered quite a severe reaction to. Due to the reaction it was decided by his oncologist that he should not have his second round of chemo in mid November. Throughout this time he has continued to have hormone therapy and regular blood tests.

He met with his oncologist on Wednesday last week and was advised that having more chemotherapy was unproductive due to te reaction my dad suffered with. So he will continue with the hormone injections every 3 months and has also been prescribed hormone medication to take. His oncologist also informed him that his psa level has dropped down to 10.

I didn't go to this appointment with my dad but he was very positive when telling me how it went, relieved that he didn't have to have any more chemo (for now at least) and it's obviously very good news that his psa level has dropped from 51 to 10 in 3 months. Fingers crossed it will continue in a downward trajectory and with close monitoring from his gp and oncologist any negative change in psa level will be acted upon swiftly.

Many thanks,

Steve

User

Posted 10 Dec 2018 at 09:37

Hi Steve,

Thanks for the update. I’m away visiting family at the moment but your dad and I had a chat just before his oncologist appointment. It was like talking to a different person, he sounded so much better and more relaxed. It shows how much of a battering he took from that one cycle of chemotherapy! He texted me after his appt to say he wasn’t going to be getting anymore chemotherapy.

Brilliant news about his PSA. Everyone feels more positive and more at ease with a drop like that don’t they?

Take care & all the best

Dave

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