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Dad has been left hanging

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User

Posted 03 Feb 2019 at 09:37

Originally Posted by: Online Community Member

I don't know what your dad's Urologist is thinking of. As others have said your dad now needs an Oncologist on his case. I just think it's awful that so many of us have to fight our loved one's corner for them. It's good that he has you looking out for him.

Stay calm and don't let them fob you off with further delays on Monday. I would even go so far as to demand the HT starts immediately. You don't need to wait for scans to be arranged first.

Good luck

Ann

I think it may be better to query why HT has not started rather than advising someone to demand they start it. We dont know all the history and there may be a valid reason why they havent started it. Do you really know they dont have to wait for scans to be arranged first?

Bri

User

Posted 03 Feb 2019 at 09:46

Francij1

Thank you for your response

Dads PSA was actually 8.9 8 weeks post op. 10 at 10 weeks and 12 at 12 weeks 😢

Obviously it is active and we are concerned

He was diagnosed in 2016 with a PSA of 12 and it stayed at 12 until his operation

He only had a PSA test due to Doctors ruling out other health issues which have since resolved. He had no symptoms to indicate any problems with his prostate and still didn’t upto the day of his surgery.

Suzi

User

Posted 03 Feb 2019 at 10:23

Interesting link to the Southport Reporter Barry.

Is Suzi's father near Liverpool. She's got some good advice on here, it's surprising a surgeon can make appointments post op on such equipment although if you had to wait for an oncologist appointment to be told the same thing you might not be too happy about that either.

I recall reading someone elses comment that their Onco said they wouldn't start hormones till psa reached 20. In theory you could probably have a bone scan within a couple of days, it's a hard call, the phone call is a good thing. All the best, keep us in touch. Peter

User

Posted 03 Feb 2019 at 10:27

Originally Posted by: Online Community Member

Bri

Hi Brian, . I have not seen anyone on here not go down the HT Route where their cancer has recurred ( or more often not been contained excepting men who refuse it for their own reasons)

Lyn has said the sooner he is on it the better but you don't criticize her. To me it at least seems to me to be a good holding option on the cancer whilst they are dilly dallying with Suzi's dad's treatment. Please feel free to explain what you think are the valid reasons for not giving HT whilst he waits for scans.

Yes maybe to use the word " demand " is a bit strong but I get passionate when I feel people are being short changed. I am probably best just leaving the advice to the few experts on here like you Brian rather than engaging in a game of one upmanship.

User

Posted 03 Feb 2019 at 11:38

We do have quite a few men here that have had adjuvant or salvage RT without hormone treatment and it isn’t ideal to get someone onto HT before they have at least tried to pinpoint where the active cancer cells are (because the hormones could reduce the tumours and give a misleading result).

However, in this case there has been such a delay that perhaps the most important thing is to do something. I think you are being a bit harsh Bri because you are already stressing about a micro-rise and whether the onco should act ... if you had a PSA that had risen to 8.9 and then 12 and no one was doing anything, you would be beside yourself with anxiety and (I suspect) demanding every scan and hormone available.

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

User

Posted 03 Feb 2019 at 11:56

Originally Posted by: Online Community Member

Bri

Hi Brian, . I have not seen anyone on here not go down the HT Route where their cancer has recurred ( or more often not been contained excepting men who refuse it for their own reasons)

but thats exactly my point.We are not experts at all. As i said we dont know the full history. I never said i knew there are valid reasons, if you read my post properly you will see i said there may be valid reasons... but that is something only the medics will know which is why i said it may be better to query this. Oh and im not playing a game of one upmanship I just think people should think before posting some of the non expert, well intended, advise they are giving

Bri

Edited by member 03 Feb 2019 at 11:58 | Reason: Not specified

User

Posted 03 Feb 2019 at 12:12

Originally Posted by: Online Community Member

. I think you are being a bit harsh Bri because you are already stressing about a micro-rise and whether the onco should act ... if you had a PSA that had risen to 8.9 and then 12 and no one was doing anything, you would be beside yourself with anxiety and (I suspect) demanding every scan and hormone available.

I cant see how i was being harsh. I think that the medics decisions and actions or lack of should be questioned which is all i was saying. I would ask why hadnt HT been started. They may give a valid reason and they may not. If I was not happy with an answer I would seek a 2nd opinion. I think its a tad irresponsible to advise someone to demand medical intervention when we have no idea what the rationale is.

Im not sure what this has to do with my personal situation and for the record I’m not stressed about it and certainly dont think or expect the oncol to act. I've already said i expect another test in 3 months. I would not insist on treatment if it was not offered but i would seriously question every decision as i have always done. I may ask for scans but who wouldn't. You have figured me out wrong on this occasion Lyn

Bri

Edited by member 03 Feb 2019 at 12:14 | Reason: Not specified

User

Posted 03 Feb 2019 at 12:20

Quote:

Brianissac;21120

People should think before posting some of the non expert, well intended, advise they are giving

Bri

Don't worry Brian I will decline from any further posting although I do think you are not crediting the new folk using the site with the intelligence to take all the information offered and make their own minds up about how to go forward. I thought that was the purpose of a forum and not to shoot people down in flames the moment you disagree with a post.

Anyway as I will not be indulging in any further comments so feel free to continue to give your sage advice.

Suzi . I wish your dad and your family all the best following your call tomorrow and hope you can get his treatment underway as soon as possible.

Best regards

Ann

Edited by moderator 11 Feb 2019 at 00:43 | Reason: Not specified

User

Posted 03 Feb 2019 at 12:46

My onco elected not to give me HT prior or concurrent with SRT because he felt the increased toxicity that HT can cause would have an effect on my existing stricture and further planned surgery. On reoccurrence my PSA only rose to around 0.27 and it was assumed to be in the prostate bed.

Thanks Chris

Edited by moderator 11 Feb 2019 at 00:43 | Reason: Not specified

User

Posted 03 Feb 2019 at 12:51

Dear Suzi

Please ignore this little spat, it happens sometimes amongst people who are stressed, me included (I’ve had my moments). Wishing you a successful call tomorrow and a good outcome.

Love Devonmaid xxxx

User

Posted 03 Feb 2019 at 13:36

Hi Peter

Yes we are near Liverpool and Dad is being treated there.

I think my main concern in all of this is that the consultant mentioned Salvage RT a possibility but obviously wanted scans before hand. We are concerned if it has become unsalvageable now.

He was very excited to offer the new PSMA scan and said it would pick up micro mets as Dad's PSA was above 8. He was very shocked that Dads PSA was even detectable as his scans prior showed it had reached the prostate wall but there were no signs of any spread. Dad asked if he could go on his planned holiday before the op or if it was best to cancel. He was told 'go on your holiday it has taken years to get to this size' Dad asked again if it would be ok and was told 'go and enjoy your holiday, when you come back we will get you in put it in the bin and its gone' We totally understand he isn't a magician and cant predict the future, but, we were totally floored when he told us it was a more aggressive than first thought.

We are worrying as the PSA level is rising every two weeks, prior to his op it was fluctuating between 10 & 12 for 18 months.

Interesting to read about not starting HT until PSA reaches 20.

I just feel Dad has been left hanging in all of this and isn't getting any straight answers.

Take Care, I will keep you all posted.

Thank God for this community

Suzi

User

Posted 03 Feb 2019 at 14:41

Hi Suzi
It was my oncologist who said they would not start HT until my PSA hit the 20’s. I had asked after having Adjuvant RT. The reason she gave was to avoid the toxicity for as long as possible. As I have said above if I have a recurrence and I am given this same advice I will question the decision. If I don’t get a satisfactory answer I will seek a 2nd opinion.
I apologise for the above “spat” but I was just pointing out how important it can be to query decisions others are making about our health

Take care
Bri

User

Posted 03 Feb 2019 at 16:56

There is a difference between taking action when there is evidence of active cancer post-op and moving onto permanent HT when there is recurrence post-salvage treatment and there are no more curative options.

NICE defines 0.2 as the point at which adjuvant or salvage treatment should commence in post-op recurrence.

For men that have had surgery and RT, some oncos would delay permanent HT until 5 or 10 - Bri's onco and one other on here have stated 20 ( in their soecific cases). This is because HT has a limited life span so the earlier it starts, the sooner it will stop working.

The 5, 10 or 20 benchmark is not relevant to your dad.

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

User

Posted 03 Feb 2019 at 17:04

Originally Posted by: Online Community Member

I will decline from any further posting although I do think you are not crediting the new folk using the site with the intelligence to take all the information offered and make their own minds up

Peggles - don't stop posting. We all react to posts in different ways and as you rightly point out, it is the range of views that ensures balance. If only a few people responded, the forum would quickly develop an unconscious bias. That's the main reason I refuse to engage with the private message function.

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

User

Posted 03 Feb 2019 at 18:26

Originally Posted by: Online Community Member

I agree but I stand by my earlier post that telling people to demand treatment is not helpful

Bri

User

Posted 04 Feb 2019 at 18:16

Thank you everyone for all your advice and support.

Before I could call today the hospital contacted Dad with an appointment for tomorrow for a scan. He didn't say what he was having but it takes quite a few hours all in.

I will keep you all updated with his journey.

Lots of Love and positive thoughts to you all

Suzi xx

User

Posted 04 Feb 2019 at 19:03

Yes it's good how they ring out of the blue. I was asked to attend one appointment within 2hrs but I definitely wasn't complaining, and my scans and pre-op had only a couple of days notice.

Perhaps they've been reading this thread.

All the best Peter

Edited by member 04 Feb 2019 at 19:11 | Reason: Other thoughts

User

Posted 04 Feb 2019 at 19:57

It seems crazy to say I’m pleased to hear this, but I am!

good luck

Love Devonmaid xxx

User

Posted 04 Feb 2019 at 22:00

Thank you Devonmaid. I know exactly what you mean.

At least now Dad can get some answers and know exactly what he is dealing with.

He said the not knowing is making him ill, otherwise he feels very well in himself.

Suzi xxx

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