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Flembo

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User
Posted 22 Mar 2018 at 19:37
Hi everyone, I just wanted to introduce myself to you all.

Until Wednesday I didn't have a care in the world. I had asked for a psa test because a friend was convinced he had prostate cancer and it just got me thinking. To my surprose I was called into the doctors because it was 8. Doctor found a lump in my prostate and has referred me to see cancer specialist next wednesday. Just like most I go on line and read scare stories,so natrually I am aprehensive about what I will be told although I am remaining very positive. It came as a complete shock.

I think that whatever happens I can remain upbeat but my wife is not coping too well. I didn't think I had symptoms although my urine steam is less than gushing and I have been anaemic for years and read that it can be a symptom. And embarrassingly I have erectile disfunction, things that I just put down to age (73 this year)

Still, if it hadn't been for my friends problems I would be in exactly the same situation but not knowing and not getting any help while things possibly get worse.

My friend did see his doctor and has an enlarged prostate which is going to be monitored.

Anyway thanks if you've got this far and my best wishes to all of you. I don't know if its a good thing to do but I expect the worse and anything less is a bonus.

User
Posted 23 Mar 2018 at 12:23

To be positive, it is good that you requested a PSA test.

After your visit to urology, they may send you for an MRI scan, which may then rule out the need for a biopsy altogether.

If a biopsy is required, those results will tell if you have an aggressive cancer (a “tiger”) or a very slow growing cancer (a “kitten”) which requires no treatment at all, just regular checks.

You may well have a benign prostate enlargement, so try not to worry too much until you have seen the urologist.

The “urgency” is a government policy under the “two week rule”, which means everyone who might have cancer are referred to a specialist within that time frame, so please don’t read anything sinister into that regarding your case.

Do let us know how you get on and the best of luck!

User
Posted 22 Mar 2018 at 21:01
Hi There and welcome to the site.

You will find a great deal of helpful information here in the form of the Toolkit that you can download. Reading this information before your appointment might help you to formulate questions that you might want to ask on the day.

It's all a bit of a shock for you both but once you have a diagnosis if it is PCa you will then find that there are many treatment paths available.

Hopefully you both will find this site to be a great source of information both from the nurses that you can phone or from others on this site who have shared your experiences. In the meantime you have to be patient until your tests are done and I have found that it doesn't pay to make any assumptions about test results. Wait until you get them and then act on them.

Keep us up to speed with how you get on.

User
Posted 23 Mar 2018 at 13:48

If you click on our names you will see our “life histories” in most cases.

I find it very galling that my wife has had two reminders in the last nine months from the GP to go for a cervical smear test for cervical cancer, despite her having her cervix and everything else taken away during a total hysterectomy three years ago.

She reminded the surgery of that after the first invitation, but still a second one arrived.

In contrast, no-one invited me for a PSA test, and it was more by luck than judgement that one GP ticked the PSA box on my annual blood test form last November resulting in a PSA of 16 odd. My first and only one was back in 2010 when it was 2.2.

Sexual discrimination!

Anyway, the Professor of Urology I saw in London yesterday says my cancer is “completely curable” at this stage with a radical prostatectomy, so that’s good news for me.

User
Posted 23 Mar 2018 at 15:05

Originally Posted by: Online Community Member
Dad lived to 101, physically perfect and I was wondering how to fill the next 30 years of my life.

Same here, until my diagnosis and prognosis 12 months ago. Dad lived to 93 until a life's heavy drinking caught up with his liver. Mum, 94, is planning her 100th birthday party. Similar longevity with Grandparents.

Never had anything more than occasional cold until diagnosis, and here I am post PCa treatment, waiting for CT scan results for a 50x50 mm growth next to my kidneys.

Was panicking until a telephone call to PCUK specialist nurse, who explained with a low PSA it was not related to PCa. Before, it was a long journey home from the hospital after chance discovery by U/S.

Originally Posted by: Online Community Member
no-one invited me for a PSA test, and it was more by luck than judgement that one GP ticked the PSA box on my annual blood test form last November resulting in a PSA of 16 odd. My first and only one was back in 2010 when it was 2.2.

Same here, only because I had a good GP who was watching my PSA. Many I have met at Maggie's didn't have a good GP or never had anything to visit them with and slipped through the net.

Definitely time to introduce PSA screening.

 

Edited by member 23 Mar 2018 at 18:33  | Reason: Not specified

User
Posted 23 Mar 2018 at 20:20
Flembo

Nothing written on this site is boring as it is all about us sharing feelings, experiences and knowledge and if writing down your thoughts and feelings is helpful to you then that's great. The added bonus is that your feelings will probably be shared by others on the site and all of us need reassurance that we are "not the only one" so you will have already given this reassurance to someone else.

Like you I usually go with "prepare for the worst but hope for the best" and this works for me.

Enjoy your weekend.

Kevan

User
Posted 23 Mar 2018 at 21:17

With the experience of losing your second wife it is no surprise that you are feeling anxious. However these are 2 very different types of cancer.

Base PSA levels are age related. At 73 the recommended base level to be offered an MRI scan and biopsy is 6.5, so your PSA of 8 is quite low and just above this.

If it is PCa, at this PSA level then it is most likely to be curable.

I would say you are definitely lucky to have had the PSA test, and if it is PCa, to have found it found it so early.

Keep us posted on how you get on.

User
Posted 28 Mar 2018 at 17:24

Flembo, I hated the period I had with Clexane, which left me black and blue! I was glad to be put on Apixaban, which isca bit like Warfarin, but without the blood tests. You might see if you can try that. More civilised!

AC

User
Posted 28 Mar 2018 at 18:14

Originally Posted by: Online Community Member
What are your experiences of the biopsy? Is it as ok as the doctors say or is that just sweet talk to get you on the table?

Tempted to say it's all sweet talk, but my (Template) Biopsy was completely pain free, and no problems afterwards apart from a blocked bladder, so had a catheter for a week.

Friend told me his TRUS biopsy was like being flicked with a rubber band, so no worries there.

User
Posted 06 Jun 2018 at 20:17
Main problem for me during latter part of RT was increased need to pee more often and urgently. This gradually returned to pre RT levels so by about 10 weeks after this was complete but it does not follow this would be the same for you. Even it was a slight problem in your case there are ways to get round this.t Personally, I found the rather debilitating effects of HT more of a problem which again varies from one man to another.

There have been a number of threads about Insurance providers for men with PCa. It could be worth trying the site search facility but google is probably a better source as it will more easily show what our members have written on the subject.

Barry
User
Posted 06 Jun 2018 at 20:58
I had 20 sessions of RT last year, with very little in the way of side effects. During the course I had to pee more frequently than usual and also had some hesitancy, but these wore off within a week or so of the treatment ending.

Good luck!

Show Most Thanked Posts
User
Posted 22 Mar 2018 at 21:01
Hi There and welcome to the site.

You will find a great deal of helpful information here in the form of the Toolkit that you can download. Reading this information before your appointment might help you to formulate questions that you might want to ask on the day.

It's all a bit of a shock for you both but once you have a diagnosis if it is PCa you will then find that there are many treatment paths available.

Hopefully you both will find this site to be a great source of information both from the nurses that you can phone or from others on this site who have shared your experiences. In the meantime you have to be patient until your tests are done and I have found that it doesn't pay to make any assumptions about test results. Wait until you get them and then act on them.

Keep us up to speed with how you get on.

User
Posted 23 Mar 2018 at 10:24
Thanks...I tend to be a bit obsessive about things and this is no exception. Its the effect of the word "cancer" that changes your life in an instant. Dad lived to 101, physically perfect and I was wondering how to fill the next 30 years of my life. Although I haven't been diagnosed yet and my doctor was saying the refereal was to rule out cancer I feel my life has changed. I can imagine that thats a fairly common feeling.

Everything is happening quickly. Blood test thursday, call from GP monday, see gp wednesday, hospital visit following wednesday. Part of me says "thats great NHS efficiency" and the other part asks "why the rush". The doctor can't win on this one.

Anyway I am browsing personal stories with great interest. Helpful or depressing? I have mixed emotions. But the fact that people post means they are surviving.

User
Posted 23 Mar 2018 at 12:23

To be positive, it is good that you requested a PSA test.

After your visit to urology, they may send you for an MRI scan, which may then rule out the need for a biopsy altogether.

If a biopsy is required, those results will tell if you have an aggressive cancer (a “tiger”) or a very slow growing cancer (a “kitten”) which requires no treatment at all, just regular checks.

You may well have a benign prostate enlargement, so try not to worry too much until you have seen the urologist.

The “urgency” is a government policy under the “two week rule”, which means everyone who might have cancer are referred to a specialist within that time frame, so please don’t read anything sinister into that regarding your case.

Do let us know how you get on and the best of luck!

User
Posted 23 Mar 2018 at 13:18
Thanks. Trouble is I've inherited the "worry " gene from my mum. I'm avidly reading these posts and am really pleased I've joined. I'm already urging my friends to get checked.
User
Posted 23 Mar 2018 at 13:48

If you click on our names you will see our “life histories” in most cases.

I find it very galling that my wife has had two reminders in the last nine months from the GP to go for a cervical smear test for cervical cancer, despite her having her cervix and everything else taken away during a total hysterectomy three years ago.

She reminded the surgery of that after the first invitation, but still a second one arrived.

In contrast, no-one invited me for a PSA test, and it was more by luck than judgement that one GP ticked the PSA box on my annual blood test form last November resulting in a PSA of 16 odd. My first and only one was back in 2010 when it was 2.2.

Sexual discrimination!

Anyway, the Professor of Urology I saw in London yesterday says my cancer is “completely curable” at this stage with a radical prostatectomy, so that’s good news for me.

User
Posted 23 Mar 2018 at 15:05

Originally Posted by: Online Community Member
Dad lived to 101, physically perfect and I was wondering how to fill the next 30 years of my life.

Same here, until my diagnosis and prognosis 12 months ago. Dad lived to 93 until a life's heavy drinking caught up with his liver. Mum, 94, is planning her 100th birthday party. Similar longevity with Grandparents.

Never had anything more than occasional cold until diagnosis, and here I am post PCa treatment, waiting for CT scan results for a 50x50 mm growth next to my kidneys.

Was panicking until a telephone call to PCUK specialist nurse, who explained with a low PSA it was not related to PCa. Before, it was a long journey home from the hospital after chance discovery by U/S.

Originally Posted by: Online Community Member
no-one invited me for a PSA test, and it was more by luck than judgement that one GP ticked the PSA box on my annual blood test form last November resulting in a PSA of 16 odd. My first and only one was back in 2010 when it was 2.2.

Same here, only because I had a good GP who was watching my PSA. Many I have met at Maggie's didn't have a good GP or never had anything to visit them with and slipped through the net.

Definitely time to introduce PSA screening.

 

Edited by member 23 Mar 2018 at 18:33  | Reason: Not specified

User
Posted 23 Mar 2018 at 19:38
Sorry to bore you all again but, if you dont mind,it helps me to write down thoughts.

I tend to be an"expect the worse and if its less its a bonus" guy. If I have a persistent tickle in my throat for a few days I think its deadly. My 2nd wife died 18 years ago of mesothelioma just 5 months after disgnosis so I have had experience of the worst of slowburn cancers. She was 59 2 days after diagnosis.

I don't know whether to feel pleased that a chance made me ask for a psa or annoyed that I didn't carry on in ignorance. Silly I know but its the second time the big C had stopped me in my tracks.

I will try to be patient and wait for the diagnosis.

User
Posted 23 Mar 2018 at 20:20
Flembo

Nothing written on this site is boring as it is all about us sharing feelings, experiences and knowledge and if writing down your thoughts and feelings is helpful to you then that's great. The added bonus is that your feelings will probably be shared by others on the site and all of us need reassurance that we are "not the only one" so you will have already given this reassurance to someone else.

Like you I usually go with "prepare for the worst but hope for the best" and this works for me.

Enjoy your weekend.

Kevan

User
Posted 23 Mar 2018 at 21:17

With the experience of losing your second wife it is no surprise that you are feeling anxious. However these are 2 very different types of cancer.

Base PSA levels are age related. At 73 the recommended base level to be offered an MRI scan and biopsy is 6.5, so your PSA of 8 is quite low and just above this.

If it is PCa, at this PSA level then it is most likely to be curable.

I would say you are definitely lucky to have had the PSA test, and if it is PCa, to have found it found it so early.

Keep us posted on how you get on.

User
Posted 23 Mar 2018 at 22:23
That actually cheered me up. Thanks.
User
Posted 28 Mar 2018 at 16:24
I went to see irolagist today. Had DRE bllod test urine test and I'm booked in for mri next Wednesday. Feeling amazingly positive at the moment which I hope to retain until such time as I get bad news. One slight complication is my warfarin habit. I have to come off it and inject claxane before my biopsy. Now I absolutely hate the idea of leaving warfarin even for a few days.

Basically thats all I have to report.

What are your experiences of the biopsy? Is it as ok as the doctors say or is that just sweet talk to get you on the table?

User
Posted 28 Mar 2018 at 17:24

Flembo, I hated the period I had with Clexane, which left me black and blue! I was glad to be put on Apixaban, which isca bit like Warfarin, but without the blood tests. You might see if you can try that. More civilised!

AC

User
Posted 28 Mar 2018 at 18:14

Originally Posted by: Online Community Member
What are your experiences of the biopsy? Is it as ok as the doctors say or is that just sweet talk to get you on the table?

Tempted to say it's all sweet talk, but my (Template) Biopsy was completely pain free, and no problems afterwards apart from a blocked bladder, so had a catheter for a week.

Friend told me his TRUS biopsy was like being flicked with a rubber band, so no worries there.

User
Posted 28 Mar 2018 at 19:35

Thanks for the biopsy replies. Very reassuring as long as you're not sweet talkers. I'll report back when I know more. Just got to learn how to go with the flow. Regarding the warfarin, I've been on it for 11 years now 4mg a day. All my NIR levels are steady except when I've had to go temporarily on heparin or claxane and once when a careless doctor gave me an antibiotic which sent my warfarin nurse into a panic. All the best to you all and have a nice Easter.

User
Posted 04 Apr 2018 at 10:22
Hi everyome.

Just teporting in. I had my MRI scan this morning and managed to get appointment to see the doctor on April 19th. I was shocked to be told that the only other appt was in August. Ok I haven't been diagnosed yet, but the reason for my referal was to check on the possibility of cancer. Had O not crept into a near timeslot I would be in limbo for 5 months.

Have others experienced a 5 month, or longer, delay from scan to results?.It seems crazy to me to have a fast track to doctor and scan only for the results to sit there for 5 months, as presimably some other peoples results have.

User
Posted 04 Apr 2018 at 10:46

I thought there was a strict NHS timescale for potential cancer cases i.e. first hospital appointment within two weeks of referral by the G.P. - the “two week rule”.

I believe there are similar deadlines for follow-ups, but I’m not sure what they are. Two months springs to mind.

User
Posted 04 Apr 2018 at 13:47

Originally Posted by: Online Community Member
shocked to be told that the only other appt was in August. I would be in limbo for 5 months.

I should imagine the staff probably have got confused / misheard.

Edited by member 04 Apr 2018 at 13:59  | Reason: Not specified

User
Posted 04 Apr 2018 at 13:55

Originally Posted by: Online Community Member
Same here, until my diagnosis and prognosis 12 months ago. Dad lived to 93 until a life's heavy drinking caught up with his liver. Mum, 94, is planning her 100th birthday party. Similar longevity with Grandparents.

Never had anything more than occasional cold until diagnosis, and here I am post PCa treatment, waiting for CT scan results for a 50x50 mm growth next to my kidneys.

Adrenal Mass diagnosed as another cancer, not related to PCa !

Awaiting call from Endocrinologist to have it removed

User
Posted 04 Apr 2018 at 14:04
Online Community Member wrote:

Adrenal Mass diagnosed as another cancer, not related to PCa !

Awaiting call from Endocrinologist to have it removed

You’re not a very lucky lad, are you?

Nevertheless, best of luck!

Edited by member 04 Apr 2018 at 14:07  | Reason: Not specified

User
Posted 04 Apr 2018 at 19:05
Sadly not true. Lady in urology said she couldnt offer anything before August and this was confirmed by the urologists secretary but she found a cancellation. As an update shortly after I got home a letter came for a US foĺlowed if necessary by a biopsy. The oroblem for me is that I must come off wsrfarin and go onto claxane. However the hospital imaging helpline wss not accepting any calls and my gp cannot do anything until he gets a doseage from either the hospital or my warfarin clijic, neither of which have responded tobmy ohone calls today.
User
Posted 04 Apr 2018 at 19:08
Sorry about the spellings. I had a works reunion today and pigged out on lager. Well thats my excuse.
User
Posted 05 Apr 2018 at 11:03
Not a problem - always enjoy your lager. I just want to ask a little question. Can't you transfer yourself to another NHS hospital as it may be quicker than the one you are currently attending?

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

User
Posted 05 Apr 2018 at 21:24
Managed to get through on hospital helpline after about 20 tries. " the number you have dialled is busy, dial 5 for ringback" so I dialed 5. "This number does not accept ringback".

Eventually got ringtone and from then they couldn't have been more helpful. Biopsy has been delayed one week to give time to sort out claxane. Hava also been "guaranteed" appt 2 weeks after. Urology keeps 5 appts a day for post biopsy. I just expected hospital to get things organised better.

One of my colleagues at the reunion was sadly diagnosed with prostate cancer in January. It has spread to his bone. He has a hormone implant and has had radiolgy.

User
Posted 21 Apr 2018 at 23:49

Just messed up my biopsy appointment Wednesday by injecting claxane before instead of after procedure. Generously offered appointment next Wednesday. Went for results of my mri on Thursday. Appointments running about 90 minutes late and then told results had not reported. Doctor was very rude , trying to hurry me out. Had to force him to phone imaging to ask about results but as it was 5pm radiologists had gone home.
Anyway , at the moment I feel like the narrator in HG Wells war of the Worlds. The Martians have landed but the engine is still shunting in the railway yard.

User
Posted 10 May 2018 at 10:44
Hi everyone.

I'm now in a postion to bring you up to date. I HAVE been diagnosed with prostate cancer. My doctors believe it is still within the prostate. Saw the consultant wednesday after my case conference I was told they will cute me. I have started on hormone tablets with an injection after 2 weeks to be followed by external beam therapy. I am due for a bone scan next Tuesday to check that it is contained but apparently my psa makes it extremely unlikely that it has broken out.

The speed of the NHS has taken my breath away. In fact its me that has been delaying things by not reading instructions and injecting clexane on the morning of my biopsy thus delaying it by a week.

So here I am very positive very glad that I asked for a blood test very happy that my doctors are talking "cure". And very impressed with my NHS. I think is about 7 weeks since I went to the doctor and here I am already starting treatment.

User
Posted 10 May 2018 at 20:18

It seems a weird thing to say but pleased to see that your medical team believe you are still in the cure camp.

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

User
Posted 11 May 2018 at 10:00
Thank you. Thats what they told me and I have to trust them.
User
Posted 06 Jun 2018 at 15:39

hello again. I've not posted much because theres not a lot to post until now.

My diagnosis is early stage localised cancer.

Treatment is 2 hormone injections (I've had one) and 20 sessions of radiotherapy. 

I do have a question if any of you can answer with experience. What can I expect after radiotherapy?

Will any side effect kick in quickly or months later?

I expect to be through radiotherapy by the end of september and I have a pre planned 6 weeks holiday in Australia and New Zealand starting november 19th and my instinct is to cancel but it means letting others down. So assuming I have 10 weeks after therapy and 6 weeks out of the country am I likely to have problems?

Any help would be gratefully received. The thing is I don't fancy having to seek help when on the other side of the world. Also can you reccomend any insurace companies who have reasonable charges.

Thanks very much

Ken

User
Posted 06 Jun 2018 at 20:17
Main problem for me during latter part of RT was increased need to pee more often and urgently. This gradually returned to pre RT levels so by about 10 weeks after this was complete but it does not follow this would be the same for you. Even it was a slight problem in your case there are ways to get round this.t Personally, I found the rather debilitating effects of HT more of a problem which again varies from one man to another.

There have been a number of threads about Insurance providers for men with PCa. It could be worth trying the site search facility but google is probably a better source as it will more easily show what our members have written on the subject.

Barry
User
Posted 06 Jun 2018 at 20:58
I had 20 sessions of RT last year, with very little in the way of side effects. During the course I had to pee more frequently than usual and also had some hesitancy, but these wore off within a week or so of the treatment ending.

Good luck!

User
Posted 06 Jun 2018 at 21:25
Thank you for answering so quickly.

Ken

User
Posted 06 Jun 2018 at 23:13
The main issue with a holiday that soon after RT will be remembering to pack factor 50 sun cream as your midriff will be extra-sensitive to the sun and the skin can easily burn.

We went to Gambia 12 weeks after RT and he kept his shirt on in the hottest part of the day

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

 
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