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Hino

Thrown under the bus.

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Hino

Aged 74, with no family or support, diagnosed last August with metastatic Prostate cancer which has spread to the pelvis and with two other mets in the groin and penis,  Gleason score 9.  I live in Toronto NSW and have been receiving treatment at Chris O'Brien Life house in Sydney. After diagnosis,  was given Chemo and Lucrin,  with Prolia  to help my bones.

 

My GP's in Toronto don't want to know when I present with symptoms . Sample quotes are...1/ "You don't want to live too long"..... ( true ).  2/ "Do you really want to know" .... (When I asked for scans to find out what was going on) .  3/ "Given your condition do you really want to  be spending time having colonoscopies when you could be doing other things".. (When I asked what could be done to investigate my inability to pass stools.)

My Oncologist at Chris O'Brien can only be bothered so see me about one time in three and I usually take ( what for me ), is a two day train trip with overnight accommodation to Sydney in order for me to see her assistant of the day. The last time I made the journey,  it was to meet a twenty something Chinese lady who was reading my notes as she walked into the consulting room.

Apart from the biopsy and initial bone scans ordered by my Urologist, no further attempt to investigate or monitor my condition has been made and my Oncologist seems happy to rely on PSA scores as a condition indicator,  even though my condition seems to worsen almost daily and my reports of rapidly worsening health are totally ignored. Her opinion is that the Lucrin path is the only,  present and future treatment for me. Stating that no matter what my symptoms are, the treatment options remain the same.

 

I'm far from happy to know that I have a terminal illness,  but what makes me even more unhappy is the feeling that i will die from neglect much sooner than need be.

 

I've put off writing to this forum, so that I don't burden others with my problem. but I really don't know where to turn or how to proceed and any advice would be appreciated.

 

Best regards,

 

Jim Lawrenson

 

 

 

 

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Kevin Martin

Hello Jim,

What has been done to you is just not acceptable. I would look for another GP and ask to be referred to a Urologist and Oncologist in Newcastle.

I had my treatment at the Mater Hospital at Lambton after being referred by a urologist at Charlestown and found everyone involved to be excellent.

Yours is a terrible story and I can only wish you all the best for the future.

Regards,

KM

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Colin Glover

Jim

 

So sorry to read your story. Unfortunately I'm sure its duplicated by many men today. 

 

My story is better than yours although it has many of the same attributes. I would seek out a prostate support group in your area although they are few and far between these days. I have gained great solace within my Moreton Bay Region PC Support Group. The other action I took was to seek out a local palliative care (hospice) group either within the health system or local charity. Doing these things has given me other lines of support. 

 

Have you had an Aged Care assessment done? Have you got support through it?

 

Cheers Colin Glover

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alanbarlee

G'day Jim,

I agree completely with Kevin's sentiments.

Do you have some detailed history that you can share with us? Perhaps there may be some options (including specialists) beyond those you've described above that some of us can share with you.

Cheers,

Alan

 

 

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Patrick Turner

Hi Jim,

I think you've been treated quite badly because my story of fighting Pca has been utterly different. The doctors and nurses I've met along the way since my diagnosis in 2009 have been very helpful and it would be hard for me to think my treatment wasn't equal the best in the world. I'm also living alone with no help from anyone and I never managed to keep a wife on the porch, and I never had children, but nobody has discriminated against me by assuming I am a loser, not to be treated as well as those with families etc.

I am 72, been retired now since 2012, and live I Canberra, and it too is a regional centre where the standard of care is often not quite up to what is available in the best private hospitals in major cities of Brisbane, Sydney, or Melbourne. There are private hospitals here but they cannot offer me Lu177 treatment because demand is too low, and I doubt any hospital here has IMRT based on the Calypso method. But the latest PsMa Ga68 scans are available here, and my doctors at Canberra Hospital don't hesitate to refer me to treatment only available in big cities, usually in Sydney or Melbourne. But then there is a glaring fact that I can afford any available treatment not covered by Medicare or poorly reimbursed by medical insurance.

There could be quite a lot more problems that you have which I think should be fully examined, and unless you move to a big town, its difficult to be around for examinations, blood tests, scans, treatments and talking to doctors. I suspect it would be extremely difficult for many ppl in much more regional areas than here to be able to come here or to Sydney and just find a place to stay because rents are so high. When I moved from Sydney in 1973 to Canberra, which was a town of 170,000 ppl then, I knew they had proper hospital but many pp, had to travel by train or bus to Sydney to be treated for anything outside basic issues. My mum lived in Sydney in her house until 2013, so there was always somewhere free to stay. But I rarely ever needed to travel for a medical fix until I got Pca, and then needed special radiation treatment in Melbourne in 2016, at Epworth Hospital. I was able to stay  at Cheshire - Ryder apartments, a not for profit charity place in Ivanhoe for $30 a night, for patients from distant towns in Victoria and elsewhere in Australia, and offered to those must stay awhile to get treatments. I stayed there for 5 weeks, very happily, amoung other folks in worse dire straits than I was. The staff at Epworth were very nice to me. 

My Mum has passed away, her house sold, but I have stayed with my sister at Bondi Junction for 2 nights while getting Lu177 treatment from private hospitals which as far as I could see were equal to best in world from what I have read in other chat groups.

I have always tried to be cheerful in the face of adversity, and friendly and respectful of the doctors I have met, some of whom much higher reputations than those at my local public hospital. I love them all. They just want to see me live as long as possible.

Your attitude matters.

I think it very wise to begin Lucrin asap. Its aka ADT, and this may reduce you Psa level which probably is way too high for any man or doctor to feel OK about. Your bowel does need to be examined, and possibly Pca has spread there, and only systemic treatment may be possible.

I don't know how you fared with chemo, that you say you had, but you sure need more care than you are getting at Toronto. Often, ppl say that where chemo fails to hold back Pca, its time for palliative care, because if you cannot pay the prices for expensive treatments not covered by Medicare then you cannot have them, and this must be a fact of life for those without any property to sell, or any savings in a bank.

I had Lu177 and over last 9 months Psa went from 25 to 0.7, and costs were over $40,000, with no Medicare refund. If ADT does not work, you may try taking abiraterone or enzalutamide pills which are covered by Medicare, but when all these things fail after some time, I found the only good thing for me was Lu177, and this too may not hold down by Pca and one day I will have to face up to ceasing all possible treatments except palliative, and because I'm a loner, I might die alone, and hold one hand with my other with nobody around me, as I have seen with others, and I am not terrified by this. As one doctor said when I had been diagnosed, "nobody can live forever"

Weigh up your options and see what you can do.

Patrick Turner. 

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stevecavill

Oh my goodness Jim, that is truly totally unacceptable.  

There are a number of cancer centres much closer to you. John Hunter public hospital has a very large cancer service.  I’m personally aware of the excellent radiation oncolgists at Gosford public hospital. 

I would be asking your GP for a referral to an oncologist closer to you.

Steve 

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stevecavill

 As someone else suggested a face to face support group near you may be useful for advice, particularly where they have had treatment.   The pcfa website lists support groups in NSW here: https://www.prostate.org.au/support/list-of-support-groups/nsw-and-act-support-groups/

Steve

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Charles (Chuck) Maack

With your having to travel to Sydney, there are likely several top Medical Oncologists there much better to whomever you ended up with.  Just a couple urls identifying MedOncs and just one for an example:

 

https://www.ratemds.com/best-doctors/nsw/sydney/oncologist-hematologist/

 

https:// www.canrefer.org.au/cancer-specialists/diana-adams

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Barry&Bren

I found with my dad who is now end stage and 79 that there is a limit to what oncology can do before it really starts to affect quality of life however he has had this dreaded mets diagnosed in 2015 after 18 years prostate remission, the same time I got diagnosed with breast cancer. I got over mine but dad being mets could not. He had good quality of life though and we supplemented oncology with cannabis oil. Contact the Australian Cannabis University and request a consult. We found even the balm to be fantastic stuff. It bought dad some time which was good as I only found him again in 2015 after losing him when I was 3 years old. Our time together over the last nearly 4 years has been precious and he now lives in a hospital bed at my place with blue nurses coming daily for pain relief. He hasn't got much longer.

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Kevin Martin

Hello Jim,

I have been thinking about you a lot since I read your post.

If you want I am more than happy to meet you and sit down and talk about each others problems.

I live at Mt. Hutton so you are only about 15 k's away so I can drive over to your area, no problems.

Cheers,

KM

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tonymax

Jim,

 

Your experiences are unacceptable and I am disappointed that Chris O'Brien Lifehouse cannot do better than this.

As Alan says can you please supply a little more info to make our comments more relevant.

When did you have chemo and how many infusions?

When did you start Lucrin and what is your PSA history since?

What symptoms do you have that indicate condition worsening?

Has anybody spoken to you about possible access to clinical trials?

Are your doctors involved in a multi disciplinary team and if so what do other specialists on the team (particularly radiation oncologists) have to say about it?

 

I have been on Lucrin since a failed radical in 2003 (Gleason 8, PSA 6)

Controlled PSA for many years but by 2014 PSA had reached 70.

Got on a clinical trial in 2014 where everybody got Enzalutamide initially.

Pushed my PSA down to 1-2 where it currently sits - still on Enza.

I got a better response to Enza than most of the guys on the trial.

When Enza fails my plan B is to radiate my one identified met (pelvic lymph node)

 

If you have failed chemo then you may be able to get PBS subsidised Enzalutamide or Abiraterone.

Note PBS only subsidises one of these drugs in that situation.

 

You may be more advanced and have a more difficult path ahead.

I would tell all your doctors you are very disappointed with the way they seem to be handling it.

If they cannot be knocked into shape would suggest you look for new ones.

Happy to talk further if desired.

 

Regards            Tony Maxwell

 

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Hino
On 8/3/2019 at 7:06 PM, Colin Glover said:

Jim

 

So sorry to read your story. Unfortunately I'm sure its duplicated by many men today. 

 

My story is better than yours although it has many of the same attributes. I would seek out a prostate support group in your area although they are few and far between these days. I have gained great solace within my Moreton Bay Region PC Support Group. The other action I took was to seek out a local palliative care (hospice) group either within the health system or local charity. Doing these things has given me other lines of support. 

 

Have you had an Aged Care assessment done? Have you got support through it?

 

Cheers Colin Glover

 

 

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Hino

Hi fellas,

Many thanks for your messages and support, I'm not familiar with the format of this forum and I'm struggling to respond to posts individually. Yesterday i called my Oncologists secretary to confirm that I Would be actually seeing the specialist only to be told that (yet again ), she was too busy to see me ant that I would be seeing her 'Registrar'. I cancelled my existing appointment for the 9th of this monh and will consider my 'options' .

 

Again many thanks for the information you have shared and your messages of support. Both are much appreciated.

 

Best regards,

 

Jim Lawrenson

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stevecavill

Jim, 

i still think your experience at the Lifehouse is unacceptable, but don’t be too dismissive of a registrar.   They typically will have at least 10 years medical training, and are often better informed than the specialist because they are doing exams constantly!

Steve 

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Tony

Hi Hino,

I live in Toronto,my GP in Toronto  has been really good for the past 10 years as has my radiation Oncologist.

You may like to give me a call.

Regards

Tony Bale( I am in the phone book with the initials A.E)

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Kevin Martin

Good stuff Tony,

I hope that Jim takes up your offer'

Regards to both of you,

KM

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Hino
On 8/9/2019 at 12:38 PM, Tony said:

Hi Hino,

I live in Toronto,my GP in Toronto  has been really good for the past 10 years as has my radiation Oncologist.

You may like to give me a call.

Regards

Tony Bale( I am in the phone book with the initials A.E)

 Hi Tony, thanks for your post. I've checked the White pages and I've found your number. I'm leaving for Singapore on Tuesday morning for a vacation and to explore treatment options and I'm getting a little pushed for time. So I'll call you after I return on the 22nd if that's O.K. with you. I'd really like to talk to someone who's survived as long as you and to hear your experiences and who your local GP is.  Many thanks for contacting me

 

Best Regards,

 

Jim Lawrenson

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Kevin Martin

That's good news Jim, have a good break and all the best for the future.

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Hino
On 8/6/2019 at 8:36 PM, stevecavill said:

Jim, 

i still think your experience at the Lifehouse is unacceptable, but don’t be too dismissive of a registrar.   They typically will have at least 10 years medical training, and are often better informed than the specialist because they are doing exams constantly!

Steve 

 

Hi Steve,

Thanks for posting. My concern with the registrars I have seen so far, is that their average age seems to be in their mid twenties, so my confidence in their extensive medical knowledge is low. None that I have seen have done anything other that read through my notes and parrot what the Oncologist has written in my report. They give me my latest PSA score, scribble an update, wish me well and make another appointment for three months time......Perhaps it's just me....but I just don't 'feel the love''   :(

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Hino
On 8/3/2019 at 6:50 PM, Kevin Martin said:

Hello Jim,

What has been done to you is just not acceptable. I would look for another GP and ask to be referred to a Urologist and Oncologist in Newcastle.

I had my treatment at the Mater Hospital at Lambton after being referred by a urologist at Charlestown and found everyone involved to be excellent.

Yours is a terrible story and I can only wish you all the best for the future.

Regards,

KM

 

Hi Kevin,

Several months ago I asked  "Lifehouse " if my treatment could be transferred to the Mater. My cancer nurse said "not a problem, the transfer would be instant and almost seamless ". I waited for three weeks for Mater to respond and when there was no contact from them, I again contacted " Lifehouse" and was told that they would 'hurry up'  the Mater.  About a week after this, I was contacted by the Mater and informed that they were arranging for an appointment for my condition to be assessed.... ???   As I'd already been informed that waiting times for appointment at the Mater were in the order of three months. I turned again to  Lifehouse, where at least I could get treatment at short notice.

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Kevin Martin
Posted (edited)

Hello Jim,

What you said about the Mater is basically the opposite to my experience with them.

I changed GP's during May 2016 and he is the opposite to the one that I had been seeing for over 20 years, he is on the ball for everything and I am very impressed with the way he operates.

On 2/6/16 I had a pelvic/abdomen scan that showed a lhs lymph node problem and as a result I seen a rad/ oncologist on the 20/6 and from that visit 7 days later I started Lucrin ADT and a clinical trial on Enzalutamide the next day.

I can understand your thoughts about the Mater but I know nothing about how their system works.

I have mates who were treated at Gateshead Private who have indicated no problems, and Oncologists that I am aware of, operate out of both places. If you are a private patient maybe that is worth a call. I am a public patient and as such I have had no problems at all.

Everyone on this site has the same problem, and you can be assured that someone is always willing to assist you with whatever problem that you may have.

As I said previously, if you want to have a chat let me know.

I hope that everything turns out to be good for you.

Regards,

KM

 

Edited by Kevin Martin
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