Newly diagnosed yesterday

User

Posted 21 Aug 2018 at 20:30

I was diagnosed with Advanced Prostrate Cancer yesterday. My PSA is 14 and I've embarked on hormone treatment(bicalutamide 50mg). I'm 63 had no symptoms apart from having to wee more frequently which I put down to age and slightly enlarged prostrate.

The cancer has spread to my hip bone, urologist told me they can't cure it but with drugs can control it which left me numb and unable to take in the rest of the stuff he was saying.

I'm waiting for an appointment with the Oncologist who is currently on holiday, likelihood is I'll be starting chemotherapy in a few weeks.

Still in a state of shock about the speed of events, my wife and two boys are devastated but finding this site has given me a bit of hope after the initial shock of yesterday.

Any tips to walk me through the next few weeks from you folk who've been on this unenviable journey would be really helpful.

User

Posted 21 Aug 2018 at 23:33

Hi Jasper,

So sorry to hear about your diagnosis. I can well remember just how shocking it is when you first hear it from your consultant.

The first piece of advice, I would give you is not to panic. There are lots of treatments available to you, which while not curing your condition, will ease it and keep it at bay for a number of years.

It will take a while to come to terms with the diagnosis, but eventually, you will realise that life does go on, for you as well as everyone around you. You will develop a new "normal" and will settle into living with the limitations imposed on you. Its not ideal, but it is living.

Keep in touch with this forum and and ask as many questions as you need to. Someone on here will be able to help you.

In the meantime, good luck with the oncologist.

Peter

User

Posted 22 Aug 2018 at 10:57

Sorry you have joined as said previous lots of treatments next meeting ensure you have someone with you so they can remember the answers. Also make a list on what you want to ask. All the best Andy

User

Posted 22 Aug 2018 at 14:17

Hi Jasper,
Nothing we can say can will relieve your shock for a while but your on the right site for everything Q&A. Likewise I had no symptoms apart from not being able to pee during the day and having to pee more at night. My PSA was 392 and gleason 9 with mets in bones. I started the HT immediately and soon after had the chemo which went much better than expected. It does take a while to get your head round it and I found talking to OH the best way. When it comes to consultation I taped it on my phone which I found useful to playback at a later stage. Once a plan of action is in place I also found it easier. From here on in I tried to just eat, exercise and have fun in a sensible way, although sometimes you do need to break out of that!

good luck

steven

User

Posted 23 Aug 2018 at 15:08

As 'tip for next few weeks', perhaps there's value in this...

Having a view contrary to the common 'look on the bright side'... I seem to be fortunate in accepting and being relatively ok that my longevity prospects 'don't look good'... and the likelihood that, after 2-3 years, a relatively rapid deterioration will shove me through the 'out' door.

'What me, worry...?' stressing about it seems pointless and likely to further reduce health and life enjoyment... and so I just take things as they come, and go from there. 'What'll be, will be...' into which tests and results and further tests will slot themselves.

I relax more than I did, finding wonder-and-enjoyment in simple things often considered of no merit and/or ignored.

I've been fully open with my kids - luckily for me they're adult, and my former wives have all had the good sense to wise-up and ditch me, so my 'guilt' is less than it otherwise would be and hence easier to handle. Being openly honest with loved ones might help y'all.

So, I'm not trying to refocus this thread onto me (hell no, I've better to do than want to discuss cancer)... simply offering what I hope will be of use.

Edited by member 23 Aug 2018 at 15:13 | Reason: Burst of inspiration.

User

Posted 23 Aug 2018 at 17:10

My husband felt the same eleven years ago. We’ve experienced a whole gamut of emotions since then. Just a few tips, make sure that someone is with you during consultations armed with a notepad and pen, ask for copies of the letters sent to your g.p.

whenever you think of a question, jot it down so that you bring it up at the next consultation.

above all I know it’s hard but take time out to enjoy life make every moment matter

good luck

User

Posted 23 Aug 2018 at 17:28

I was a complete emotional wreck following my diagnosis (which was nothing like as serious as yours), so I completely understand the shock. What helped me enormously was being prescribed an anti-depression / anti-anxiety medication called Sertraline by my GP. Might be worth speaking to your GP about this.

Wishing you all the best,

Chris

Edited by member 24 Aug 2018 at 18:19 | Reason: Not specified

User

Posted 24 Aug 2018 at 17:46

Thanks all for the words of comfort. Feeling more positive about things now and a bit more focused.

How long should I have to wait before I see an Oncologist? I'm keen to get on the Chemotherapy treatment asap but need to see an Onco before that can start.

I've not seen an Oncologist at all yet.

User

Posted 24 Aug 2018 at 18:22

NHS guidelines are that you should have to wait no longer than 31 days between diagnosis of cancer and starting treatment. Hospitals are pretty good at meeting this - cancer appointments get prioritised.

Chris

User

Posted 24 Aug 2018 at 18:51

Originally Posted by: Online Community Member

Not relevant now CC as Jasper has already started treatment (they have given him bicalutimide) so there is no target or rule about how long it will be before he sees the oncologist.

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

User

Posted 24 Aug 2018 at 18:55

Apologies, I'd overlooked the "started on bicalutamide" part of the post. As you say, that stops the clock.

Chris

User

Posted 24 Aug 2018 at 23:14

I was diagnosed on 14th July (in 2015) and saw the onco for the first time on the 7th August (also 2015).

Glad you are beginning to feel a bit more positive now. It does take time to get your head around it, but you eventually begin to realise that life goes on.

I hope you get the onco appointment soon.

Peter

User

Posted 25 Aug 2018 at 20:10

If I remember correctly when my OH first saw the Oncologist she said that you cannot start Chemotherapy until at least a month after starting the HT but before the three month mark. He was diagnosed at the end of November last year, spread to shoulders, spine and hip, started same day on Hormone tablets for a month then had first implant (maybe you cannot have chemo. with the tablets?). As it was over Christmas and New Year he did not see Oncologist until mid January and had first chemo on 30th Jan.

Remember the HT is the main treatment, the chemo only helps the HT.

User

Posted 26 Aug 2018 at 09:04

@Kita...

The delay before chemo is to provide time for the hormone-block to impede the cancer and enable chemo to be more effective - very unlikely to cure, but slow the growth and reduce symptoms, and hence improve duration and quality of life.

User

Posted 26 Aug 2018 at 09:11

Metastatic cancer can't be cured, but you can certainly live for many, many years with it given the appropriate treatments, and many men die with it, not from it.

Chris

User

Posted 26 Aug 2018 at 09:16

@Cheshire Chris...

> Metastatic cancer can't be cured, but you can certainly live for many, many years with it given the appropriate treatments, and many men die with it, not from it.

While I don't want to get argumentative, the stats for this are not encouraging - 30-or-so percent beyond five years.

User

Posted 26 Aug 2018 at 09:23

I take your point, Gulliver, but Jasper appears to have had it detected at a very early stage, which gives every reason for optimism that he'll be around for many years to come.

Chris

User

Posted 26 Aug 2018 at 09:41

@CheshireChris...

>every reason for optimism...

Maybe.

My view is that optimism is often based on genuinely well-intentioned hope rather than objective verifiable fact. Although a guess, I suspect there's many for whom things didn't go the way they wanted - and that rather than 'symptom-free longevity' they instead had a shorter and more troublesome time.

Although the 'many men die with rather than from' thing is true, a lot don't. And I suggest this is something which isn't given appropriate consideration.

'When it's in yer bones' is often a considerably different situation to being contained within the prostate.

Edited by member 26 Aug 2018 at 09:43 | Reason: Rain marred my typing.

User

Posted 26 Aug 2018 at 10:46

The 30% 5-year survival figure (3 posts ago) may be a bit out of date. According to recent large scale trials, Chaarted and Stampede, for metastatic PC treated initially with ADT and chemo, survival at 5 years is 50%. For men diagnosed more recently, the median survival is likely to be more than 5 years, because of treatment advances.

Edited by member 26 Aug 2018 at 11:21 | Reason: Additional info

User

Posted 26 Aug 2018 at 12:19

@Dark Warrior...

(Whatever happened to normal names?)

In being a median mathematical average, I consider published stats accordingly - a useful guide, but not something upon which to rely. And, with advances in treatment they'll continue to improve.

Thing is though, those with metastasized Pca are likely to die from, rather than with, it.

And that's my point... yes, hope for the best but live appropriately.

Under- rather than over-estimate your longevity and prioritise important things.

If you get longer than expected, that's a bonus - so grab another beer or watch an extra episode of your favourite tv show. But please don't, in thinking you've enough time, schedule 'making-up with your long-lost daughter' for after the movie you're currently watching.

User

Posted 26 Aug 2018 at 12:42

Originally Posted by: Online Community Member

Under- rather than over-estimate your longevity and prioritise important things.

A friend has PCa and is doing fine with no symptoms and Watchful Waiting.

He is determined to have a peaceful end at a time of his choosing, whenever that may be. He intends to fly to Peru to purchase some kind of vetinerary euthanasia drug that is available over the counter there from vet’s surgeries.

I said he could fly to Peru, visit Macchu Picchu, tick one item off his bucket list and kick the bucket at the same time!

Edited by member 26 Aug 2018 at 12:43 | Reason: Not specified

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