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Told I am cured

User
Posted 11 Jul 2019 at 19:39

Well, I had my latest Blood test and review this Monday with my assigned Uro-Oncology nurse. She welcomed me with a smile and told me my blood PSA level was undetectable 😳😎


 


She told me that to all intents and purposes this means my Prostate Cancer is cured🍻  now, having been on this forum for some time and read so many stories, I have not heard of anybody’s oncologist or Uro oncology nurse telling a person with PCa they are cured!


 


I still have one Hormone Therapy injection in a weeks time and the effects of that lasts till October and from then it’s gradual return to normal. She advised everyone to; forget cancer, stop blaming things you can’t or don’t want to do on cancer and get on with the rest of your life.


 


 I suppose if I am undetectable PSA now, and I have another three months of hormone therapy which will still be starving any microcellular cancer cells out of existence, my future looks good.


 


I now have four monthly blood tests and reviews for the next five years so I can’t completely forget about my prostate cancer

User
Posted 11 Jul 2019 at 20:55

I think it’s irresponsible of doctors to use the word “cured” in relation to cancer.


I was informed by my urologist not long after my Radical Prostatectomy that I was cured.


A massive statement especially when they staged me at T3a due to extra prostatic extension.


My PSA behaved well for around 3 years after this, being just about unrecordable.


But slowly but surely it then started moving up until I was deemed to have had a biochemical recurrence or failure.


There followed salvage radiotherapy and HT to knock my PSA down.


So I wasn’t bloody cured at all and I never believed I was.


All treatment has now been stopped for the time being and my PSA which is now less than 0.02, is being regularly monitored.


I believe that I am now in remission but I am under no illusions about being cured.


 


 


 


 


 

User
Posted 12 Jul 2019 at 02:36

Hi, 


I share your frustration about being told "You're Cured".


In December, 2015, one year after finishing radiotherapy and still on hormone treatment, we were told that my low PSA figure of 0.027 showed that "I was cured" by the oncologist we saw that day.  My wife immediately thought that that was the end of it and we would never have to worry about it again.


I felt uncomfortable about what we'd been told and immediately asked the oncologist to clarify what she meant.  I had been told that my cancer had always been regarded as being in a "high risk" category because of my high PSA at diagnosis and being locally advanced. She replied by saying that yes they did expect it to return at some point but they didn't know whether this would be in a year's time or 5 or 10 years time!


I told her that she definitely had a different definition of the word "Cured" to what I had.  I said that my understanding was that I was now considered to be "In Remission" and she had to agree.  She apologised for misleading us. 


My cancer reoccurred last year and I am now incurable. 


Steve 


 

User
Posted 11 Jul 2019 at 21:24
I must agree wholeheartedly with the above reply.
I was given similar news some years ago,and after three years of zero psa,it started to creep up again,
I don't for one minute wish t suggest that no one is ever " cured" ,but I feel that remission is a far better term to use for the period during which one is being reviewed.
I hope that your remission is a long one,hopefully permanent.

"Terminal " does NOT mean imminent!!

User
Posted 12 Jul 2019 at 10:55

Originally Posted by: Online Community Member
Well you’ve thrown the lot at it. I sincerely hope the effects of it all last on the cancer. How is your QOL generally ??


chris


on the whole I have come through the Journey fairly well. From PSA 38 Gleason 4:5 T2c to undetectable in 16 months. I still have a prostate but I guess everything inside it is dead after 20 fractions high strength IMRT!


I am well aware that from October as testosterone starts to build there is a risk.


As for QoL I have regular flatulent mucous discharge episodes, so use liners in my pants, diarrhoea episodes (easily treatable), and some frequent urination issues, the thing that is hitting me hardest is the hot flushes, which are worst at night so I am worn out in the morning. 


On the plus side I am still keeping fit by cycling daily, which helps keep the HT induced weight gain under control.


in all, I should be grateful I am so well.


 

User
Posted 12 Jul 2019 at 11:45
While I agree the use of the cured word is irresponsible especially when it's a medical professional I aslo believe sometimes you just have to start thinking like you are cured just to have a normal life.

So look forward to life without HT pallance and Cary on like you are cured would be my advice. Sometimes we all need some Bollinge bravado in our lives!

BTW for the record you have had a great response to your treatment so you can definitely consider yourself in a solid remission!
User
Posted 03 Jan 2020 at 09:34
I did say for men that have good stable low PSA post-op. It is different for men that haven't had surgery, and for men whose PSA doesn't remain undetectable. You still have a prostate so small rises are not so significant, but it takes longer to be confident the RT was successful. I expect you will go to 6 monthly eventually and then annual testing as others here have done.

John has never progressed from 3 monthly. In the first 2 years because he had the recurrence and since salvage RT because every so often it pops its head over the detectable line.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 11 Jul 2019 at 20:55

I think it’s irresponsible of doctors to use the word “cured” in relation to cancer.


I was informed by my urologist not long after my Radical Prostatectomy that I was cured.


A massive statement especially when they staged me at T3a due to extra prostatic extension.


My PSA behaved well for around 3 years after this, being just about unrecordable.


But slowly but surely it then started moving up until I was deemed to have had a biochemical recurrence or failure.


There followed salvage radiotherapy and HT to knock my PSA down.


So I wasn’t bloody cured at all and I never believed I was.


All treatment has now been stopped for the time being and my PSA which is now less than 0.02, is being regularly monitored.


I believe that I am now in remission but I am under no illusions about being cured.


 


 


 


 


 

User
Posted 11 Jul 2019 at 21:24
I must agree wholeheartedly with the above reply.
I was given similar news some years ago,and after three years of zero psa,it started to creep up again,
I don't for one minute wish t suggest that no one is ever " cured" ,but I feel that remission is a far better term to use for the period during which one is being reviewed.
I hope that your remission is a long one,hopefully permanent.

"Terminal " does NOT mean imminent!!

User
Posted 12 Jul 2019 at 02:36

Hi, 


I share your frustration about being told "You're Cured".


In December, 2015, one year after finishing radiotherapy and still on hormone treatment, we were told that my low PSA figure of 0.027 showed that "I was cured" by the oncologist we saw that day.  My wife immediately thought that that was the end of it and we would never have to worry about it again.


I felt uncomfortable about what we'd been told and immediately asked the oncologist to clarify what she meant.  I had been told that my cancer had always been regarded as being in a "high risk" category because of my high PSA at diagnosis and being locally advanced. She replied by saying that yes they did expect it to return at some point but they didn't know whether this would be in a year's time or 5 or 10 years time!


I told her that she definitely had a different definition of the word "Cured" to what I had.  I said that my understanding was that I was now considered to be "In Remission" and she had to agree.  She apologised for misleading us. 


My cancer reoccurred last year and I am now incurable. 


Steve 


 

User
Posted 12 Jul 2019 at 06:00
Well you’ve thrown the lot at it. I sincerely hope the effects of it all last on the cancer. How is your QOL generally ??
User
Posted 12 Jul 2019 at 07:44

Enjoy every moment of your life and do all those things you want to do "one day ". Hope you are well for many years to come.

User
Posted 12 Jul 2019 at 08:31
She should in all likelihood have said remission rather than cured. I think reporting her to the nursing and midwifery council would be a bit of an over reaction. I am sure she does a great job on a day to day basis. Maybe next time you see her have a conversation about your remission. I’m sure she meant well by her comments

Bri
User
Posted 12 Jul 2019 at 10:55

Originally Posted by: Online Community Member
Well you’ve thrown the lot at it. I sincerely hope the effects of it all last on the cancer. How is your QOL generally ??


chris


on the whole I have come through the Journey fairly well. From PSA 38 Gleason 4:5 T2c to undetectable in 16 months. I still have a prostate but I guess everything inside it is dead after 20 fractions high strength IMRT!


I am well aware that from October as testosterone starts to build there is a risk.


As for QoL I have regular flatulent mucous discharge episodes, so use liners in my pants, diarrhoea episodes (easily treatable), and some frequent urination issues, the thing that is hitting me hardest is the hot flushes, which are worst at night so I am worn out in the morning. 


On the plus side I am still keeping fit by cycling daily, which helps keep the HT induced weight gain under control.


in all, I should be grateful I am so well.


 

User
Posted 12 Jul 2019 at 11:45
While I agree the use of the cured word is irresponsible especially when it's a medical professional I aslo believe sometimes you just have to start thinking like you are cured just to have a normal life.

So look forward to life without HT pallance and Cary on like you are cured would be my advice. Sometimes we all need some Bollinge bravado in our lives!

BTW for the record you have had a great response to your treatment so you can definitely consider yourself in a solid remission!
User
Posted 14 Aug 2019 at 17:31

Originally Posted by: Online Community Member


As for QoL I have regular flatulent mucous discharge episodes, so use liners in my pants, diarrhoea episodes (easily treatable), and some frequent urination issues, the thing that is hitting me hardest is the hot flushes, which are worst at night so I am worn out in the morning. 



I know it's no consolation, but you ain't the only one.  I'd add one more side effect of the flushes which is cramps, especially in my legs or hands, and really not a good thing to be woken by.  So I use dioralyte fairly frequently, which probably also helps with keeping the diarrhoea at bay.  But every time a flush wakes me up I become aware of my bladder so almost always get up in the night a couple of times.

User
Posted 14 Aug 2019 at 18:47

My urological surgeon told me: ‘I can cure you’ - that was before the post-operative biopsy identified spread to some lymph nodes that he had removed...


My local oncologist told me: ‘You are cured, as your PSA is now undetectable’, and this was reiterated by some random eminent Harley Street neurological oncologist who I met in the pub a few weeks ago, who also declared: ‘Anyway, cancer will be non-existent in five years’ time’. Not sure who was more drunk - him or me!


The prognostication nomograms of the Memorial Sloan Kettering Hospital do not seem to concur with talk of ‘cure’, with various percentage chances of un-cured cancer returning within several different timescales.


Anyway, I am quite happy to be ‘cured’ for now. Keep breathing!


Cheers, John.

Edited by member 14 Aug 2019 at 18:49  | Reason: Not specified

User
Posted 02 Jan 2020 at 20:50
Just entered β€œcured” in search bar as that is what I was told today.

First may I thank everyone who has.....entered this site. Your messages, conversations and general guidance has been invaluable.
And I a bit more advice needed here.

My search was to find out what I do next? 3 month PSA I know ...which I have asked to follow up with phone call rather than sit in hospital for 2 hrs 30 mins for 5 min chat with someone I have never met before (as was today). Sounds ungrateful but I had expected to see my surgeon and care nurse but that now must be out of bounds.

Grateful for more guidance if only because consequences of surgery now remain (almost dry but ED definitely an issue).
I asked about ED support but response very disappointing, almost dismissive. I know Hospital and whole NHS is under pressure.

However main issue is great outcome re Cancer treatment but when I should have been rejoicing allI have done this afternoon is lay on bed for 5 mins and then sleep until now....I know I was a bit agitated for the last few days leading up to this meeting.

Again thank you to the whole community here....priceless


User
Posted 02 Jan 2020 at 23:43

I did take issue with the word cured, but after being on here for 18 months, I am well aware that I am not cured and I am in remission. 
it is a shame you have not had better service reference your ED, I brought it up with my assigned Cancer care nurse and she was very helpful, arranged for me to get an NHS approved vacuum pump which as well as getting a successful erection, also helps to prevent penile atrophy. I did have a resistance from my local surgery they gave me the green prescription form but said they wouldn’t supply the item, but believe it or not I went to Asda pharmacy and I received it 48 hours later. I use this in conjunction with a prescription for sildenafil, which my doctor prescribed for me without any issues. The NHS only allows you four tablets a month which my GP thought was amusing, saying the NHS says you’re only allowed sex four times a month.


As my hormone therapy expired on 26th of October, my review in November, like July, was still PSA undetectable. My next review is mid March where I will have PSA and testosterone checked. Like everyone else who has been here, I will be extremely nervous for the next three months, as I know this next review will be pivotal. My PSA on diagnosis was 38 and after biopsies I was found to be Gleason 4:5 aggressive, localised So I am extremely grateful to my NHS I consider myself very lucky


 


 

User
Posted 03 Jan 2020 at 00:30

Originally Posted by: Online Community Member
Just entered “cured” in search bar as that is what I was told today. First may I thank everyone who has.....entered this site. Your messages, conversations and general guidance has been invaluable. And I a bit more advice needed here. My search was to find out what I do next? 3 month PSA I know ...which I have asked to follow up with phone call rather than sit in hospital for 2 hrs 30 mins for 5 min chat with someone I have never met before (as was today). Sounds ungrateful but I had expected to see my surgeon and care nurse but that now must be out of bounds.


 


That's shocking - who told you you were cured???? If you didn't see the surgeon or the nurse specialist, who did you see? 


What was your actual PSA result today? 


It will be worth making an appointment to sit down with your GP for a chat. Ask him / her how it works in your area .... in some areas, you carry on having your 3 monthly PSA test at the hospital (in which case it was a good idea to ask for telephone consultations rather than clinic appointments but you really want them to also put it in writing to your GP each time) while in other areas, you have your PSA test done at the GP practice and the result is sent to the surgeon / nurse specialist if there is a problem. 


In some areas, the surgeon makes the referral to the ED clinic but elsewhere it is the GP who makes the referral. Your first task is to ask the GP whether there actually is an ED service or andrology clinic in your region - not all CCGs fund these. 


 


Looking forward, if your PSA stays nice and low for the next few years, the timing of your tests should be something like:


6 weeks post-op


3 months later 


3 monthly until 1 year post op


6 monthly for 2 years


annually for the rest of your life 


However, some CCGs / surgeons prefer to keep patients on 3 monthly for 2 years and then 6 monthly until the 5 year mark. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 Jan 2020 at 07:28

There must be a fair bit of variation between CCG’s. I have been on four monthly PSA checks since end of EBRT and Have been told that will continue for another two years. I’ve been told nothing about what will happen after that yet

User
Posted 03 Jan 2020 at 09:34
I did say for men that have good stable low PSA post-op. It is different for men that haven't had surgery, and for men whose PSA doesn't remain undetectable. You still have a prostate so small rises are not so significant, but it takes longer to be confident the RT was successful. I expect you will go to 6 monthly eventually and then annual testing as others here have done.

John has never progressed from 3 monthly. In the first 2 years because he had the recurrence and since salvage RT because every so often it pops its head over the detectable line.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 Jan 2020 at 10:40
I'm approaching a year since RT and I'm now on 6-monthly PSA checks. I've been told that if my next test in May is satisfactory, I'll then move on to telephone consultations rather than seeing my consultant in person.

Cheers,

Chris
User
Posted 03 Jan 2020 at 13:15
As ever, thanks for responding.... I was actually counting on it.
Lyn, I will follow your guidance here.
Guy I saw did not tell me who he was until I asked... Mr Somewhoshallnot be named.
My guess, semi-retired senior who wants something to keep busy.......empathy...a word he never understood....did not offer histology until I insisted.....did not know local procedures re. telephone PSA follow up. I think local system at breaking point (South East London/Kent).

Thanks again
Kevin
User
Posted 03 Jan 2020 at 15:03

I have had, I think, seven PSA tests since my op in June 2018. All have been undetectable.


I am supposed to be on 3 monthly testing, but I have unilaterally extended it to four months and after reading this I will extend it to six months.


The upshot is that even if there is a PSA increase over time, the end result will be the same, HT and RT.


I have had no input or follow-up from the NHS regarding my testing regime, and basically, like so many here, I will do what Matron tells us to do πŸ˜‰


Cheers, John.

Edited by member 03 Jan 2020 at 15:04  | Reason: Not specified

User
Posted 03 Jan 2020 at 16:21

Originally Posted by: Online Community Member
basically, like so many here, I will do what Matron tells us to do πŸ˜‰


 


I hate to disappoint you all but just in case anyone was fantasising that I walk around the house in black rubber with thigh boots and a whip in each hand .... I don't. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 Jan 2020 at 17:01
To quote β€œgreat post Lyn”.
User
Posted 03 Jan 2020 at 17:03
That’s an image I’ll never get out of my head 😁
User
Posted 03 Jan 2020 at 23:34
It's always white leather in my dreams!
User
Posted 03 Jan 2020 at 23:48

Yes, I've never seen the surgeon since the pre-op interview.  He always delegates unless you're new or very serious on a ward round it seems.   After 2 years I went to phone calls with a nurse instead of seeing a doctor at the hospital.


I was told that I'd go to annual blood tests at 3 years but a new nurse says she wants to keep me on 6 months and has added all sorts of health blood tests to the next psa test.   I'm a fit gym goer but I think she wants to check I'm not drinking myself to death. I cut back on drink as soon as I was diagnosed.


Also I refused offers of ED support as it seemed to improve slowly.   After almost 3yrs I decided it had stalled and bought a vacuum pump on-line for £30 and it did make an improvement very quickly but nothing to shout from the rooftops about.  Not that I would.

User
Posted 04 Jan 2020 at 03:35

Originally Posted by: Online Community Member

I hate to disappoint you all but just in case anyone was fantasising that I walk around the house in black rubber with thigh boots and a whip in each hand .... I don't. 


I was thinking more Hattie Jaques, actually πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚


Cheers, John.

User
Posted 04 Jan 2020 at 06:51

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member

I hate to disappoint you all but just in case anyone was fantasising that I walk around the house in black rubber with thigh boots and a whip in each hand .... I don't. 


I was thinking more Hattie Jaques, in ‘Carry On, Doctor actually! πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚


Cheers, John.


https://youtu.be/eNNhuvox43I


 


User
Posted 04 Jan 2020 at 06:51

 


Originally Posted by: Online Community Member

I hate to disappoint you all but just in case anyone was fantasising that I walk around the house in black rubber with thigh boots and a whip in each hand .... I don't. 


I was thinking more of Hattie Jacques, in ‘Carry On, Doctor’ actually! πŸ˜‚πŸ˜‚πŸ˜‚


Cheers, John.


https://youtu.be/eNNhuvox43I


 

Edited by member 04 Jan 2020 at 07:07  | Reason: Not specified

User
Posted 04 Jan 2020 at 19:41

Hi Peter, ref gym.....I need to get back to gym....helps me relax etc. If you weight lift, how soon after opp did you get back to full squats etc?


Thanks


Kevin

User
Posted 04 Jan 2020 at 19:44

Pallance, (thanks for thread)


re excercise.....are you back into cycling?


Thanks

User
Posted 06 Jan 2020 at 21:22

Hi Alan, I just posted on leila's thread as her OH is a G9 guy, and so am I, and so are you. 


Just letting you know I find it reassuring reading posts from people like you. I will be off the hormones soon, so it's good reading positive posts from people in a very similar position to me. I know it is early days yet but let's hope all stays well. 


I was brought up in Weston Super Mare, and still have a lot of connections there. I'm trying to work out where your profile picture is, the buildings looked a bit like my old school, walliscote, but I think their is a pub sign. I'm going to guess a pub out Worle, or possibly Hutton. 

Edited by member 06 Jan 2020 at 23:16  | Reason: Not specified

Dave

 
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