I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error
123>

Scan this Wednesday

Email this conversation Print this conversation
User
Posted 31 Jan 2021 at 16:30

Hello to everyone. After several months of frequent urination that worsened over time and due to daughter pressure I had  a PSA test 2 weeks ago. The Doctor phoned me the following day and made an appointment for me the next day as my PSA was 64. I have a scan booked for Wednesday. What may I expect? How soon after would there be if a biopsy was required?  

User
Posted 22 Nov 2021 at 17:53
User
Posted 09 Sep 2021 at 16:53
PSA down from 0.11 in July to 0.07 in August and 0.04 in September and just had 3rd inject Zoladox injection
User
Posted 21 Sep 2021 at 22:52
Turmeric & biokult should be fine but best to check with the RT team / RT dietician before taking any supplements at all.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Sep 2021 at 00:03

Vitamins A, C, E and beta carotene are antioxidants, these will survive the digestive system. Glutathione is an antioxidant. I think if taken orally it will be broken down in the digestive system and do neither harm nor good.

Many other supplements will be marketed as antioxidants as it sounds good on the label, whether they are or not varies.

Now a good balanced diet is always a good thing, supplements can make up for dietary deficiencies and most are just excreted if surplus to requirements.

When undergoing radiotherapy or chemotherapy the oncologist is trying to poison the cancer cells, so during these treatments we shouldn't be giving the cancer lots of healthy nutrients to help it fight of the attack. Of course it would be nice to give the non-cancer cells the healthy nutrients but we can't give to one lot without giving to the other. So whilst undergoing chemo or radio don't try and live healthy (obviously don't make a deliberate attempt to live unhealthly, the oncologist is trying to provide as much toxicity to your body as he can safely get away with so don't make it even worse for your body). Once treatment has finished resume a healthy diet, take supplements if you want. Hopefully the cancer cells have been killed and you are now providing the good cells with the nutrients they need to recover from the treatment. 

Dave

User
Posted 09 Oct 2021 at 11:02
John's onco insisted that no PSA test was done between starting RT and 3 months after it finished, I think. However, my understanding is that if a man is on HT during RT, the RT doesn't really affect PSA whereas if a man is having RT monotherapy, the PSA can jump around a bit as the cancer cells fry.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Dec 2022 at 19:09

Glad to hear that your continuing to respond to the treatment also!

User
Posted 31 Jan 2021 at 16:30

Hello to everyone. After several months of frequent urination that worsened over time and due to daughter pressure I had  a PSA test 2 weeks ago. The Doctor phoned me the following day and made an appointment for me the next day as my PSA was 64. I have a scan booked for Wednesday. What may I expect? How soon after would there be if a biopsy was required?  

User
Posted 03 Feb 2021 at 13:16
If they were certain it was advanced, they wouldn't bother with a biopsy but would go straight to the bone scan. The fact that you're having the full suite of diagnostic procedures strongly suggests that it's all very much up in the air, still. Don't assume the worse - wait for the diagnostic process to be completed and then you'll know where things stand.

Best wishes,

Chris

User
Posted 03 Feb 2021 at 18:13
Don’t waste your money on any more quack remedies, the drugs to help with urgency / frequency are Tamulosin and / or Finasteride from your doctor.

And don’t assume the worst, as a PSA like yours can sometimes be down to a prostate infection.

Now you will have an agonising wait for your MRI, and then another wait to hear the results of the scan. If there is any suspicion of cancer there will be a biopsy - another wait - and finally a consultation (maybe by phone these days).

So you can look to a several week wait before you know what’s what, but you may console yourself that if you do indeed have prostate cancer, it is usually slow-growing, so a delay of a few months before the start of treatment will be neither here nor there. Nevertheless, you will be on a cancer fast-track, so the NHS will be going as fast as they can under the present difficult circumstances

Best of luck.

Cheers, John.

User
Posted 06 Feb 2021 at 18:47
There is a lot of useful information on Message Boards, particularly this one but patients should always put what their clinicans say above anything on Boards and remember that individual experiences related may be quite different to their own. PCa is a complex disease of many types and often with varying results from treatment.
Barry
User
Posted 06 Feb 2021 at 19:51
Sounds as though the diagnostic process is proceeding apace, which is good. People generally feel much better about things once the result's through - waiting for test results is never easy.

Best wishes,

Chris

User
Posted 06 Feb 2021 at 20:36

I don't remember much about the tests I had but I do remember me 'peeing in a bucket' and having a biopsy, then being operated on to have my Prostate removed by the Da Vinci Robot in April 2015. It worked for me and have never had a problem since.

User
Posted 15 Feb 2021 at 10:28

I did and it wasn't a problem

User
Posted 15 Feb 2021 at 15:46

I normally use a motorbike for hospital appointments as the parking is easier. On biopsy day I decided to take a taxi, just in case. I think I would have been fine in the car, probably would have been fine on a motorbike but didn't fancy taking the risk.

Dave

User
Posted 15 Feb 2021 at 16:28
J had his biopsy on the way to work - driving was fine.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Feb 2021 at 21:40


I headed in to the one stop shop on 1st July 2020 following a 54 ng/ml PSA test the week before, and in three hours underwent a DRE, MRI scan, and a Biopsy.

I left with a four week supply of bicalutamide tablets, a T3 prostate cancer diagnosis, and the promise of Bone and CT scans in the very near future.

I was advised not to drive myself to the one stop shop.

The scans were both done on the same day 10 days later. Full marks to the NHS for efficiency.

Edited by member 17 Feb 2021 at 09:01  | Reason: Correct a spelling mistake

User
Posted 24 Feb 2021 at 16:46

I think wait for your full diagnosis first - the multi-disciplinary team will look at your case in detail and determine which treatments are available and suitable to you. Carlisle may only offer treatments that are available in Carkisle; you can then do some research and if there are treatments that interest you and available at Newcastle, you can ask for a referral.

We self funded for private treatment; it is nice to have a private room and a coffee machine at clinics but it cost a fortune and the treatment failed so J had to have salvage treatment 2 years later. The usual aftercare and support is not always available on the NHS for patients who go private. Lots of things to think about but get your full diagnostics first.

On the flip side, my dad paid £25k 23 years ago for nerve sparing surgery (which wasn't available on the NHS then) and he has only had a recurrence in the last 2-3 years 

Edited by member 24 Feb 2021 at 16:49  | Reason: Not specified

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

User
Posted 24 Feb 2021 at 17:27
And I had private surgery for my kidney cancer but DIDN’T have a private room. I was in an NHS urology ward in an NHS hospital, because the private hospital didn’t have the Da Vinci robot. Private treatment doesn’t necessarily equate to more comfortable rooms, etc.

Chris

User
Posted 10 Mar 2021 at 20:33
Don't believe the 5 year survival thing - the urologist sounds like a bundle of laughs. We have men here with your diagnosis who are still living a good life 10 years later and in a few cases, 15 years or more. I hope that the urologist has now referred you to an oncologist?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Mar 2021 at 20:52
He says he will make an appointment with an oncologist - I guess when bone scan results are available.
User
Posted 29 Mar 2021 at 18:31
All I can think of is

- if you are not accepted on ATLANTA, does the local onco have a view about the benefits/ drawbacks of early chemo or enzalutimide?

- who will have routine responsibility for your PSA tests from now on - the hospital or GP?

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

User
Posted 15 Apr 2021 at 13:29
Seems to me that the treatment plan you have been offered is far better than a place on Atlanta - a no brainer, almost?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Apr 2021 at 14:47
The problem with these trials, as you mentioned yourself, is that you only have a 50/50 chance of receiving the treatment being trialled. The treatment plan you've been offered sounds a good one.

Best wishes,

Chris

User
Posted 15 Apr 2021 at 16:38

Originally Posted by: Online Community Member
Thanks for that Lyn - what are your thoughts on Atlanta?

 

It's a 30/30/30 risk isn't it.

- 33% chance that you will have RP with all the associated certain and potential side effects but unlikely to be curative

- 33% chance that you will have RT with all the associated certain & potential side effects but unlikely to be curative 

- 33% chance of focal therapy with fewer side effects but very unlikely to be curative

The downside of your proposed treatment plan is that there is no chance at all of it being curative but you can be sure of avoiding many of the side effects that most impact on quality of life - incontinence, for example. 

 

Whichever way you go, you seem to be almost certain of getting targeted RT to the known mets. Your call, and not an easy choice but I think my OH would want to avoid as many side effects as possible. 

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

User
Posted 20 Apr 2021 at 17:08

There are three arms to the ATLANTA trial the control arm which is Standard of Care only and two Intervention arms

Intervention arm 1: Focal therapy to the primary prostate tumour 

Intervention arm 2: Either RP or curative dose RT. The choice depends on which they believe would be more successful and also your preference for the potential side effects the different treatments pose. 

 

If randomised to either of the intervention arms then you would also be offered SABR to the metastases you have.

 

I was randomised to Intervention arm 2 and awaiting the MDT meeting following a recent MRI and PSMA PET scan 

User
Posted 20 Apr 2021 at 18:30

Originally Posted by: Online Community Member

Anyone have any thoughts on apricot kernels??? Last week the oncologist said he had no issue with people taking "natural" remedies at the same time as conventional treatment.


If you like apricots, go for it, but there is no reliable data to support the idea that any dietary supplements either help or hinder an existing case of prostate cancer (or any other form of cancer).

Best wishes,

Chris

 

User
Posted 20 Apr 2021 at 21:45

Originally Posted by: Online Community Member
Many thanks Peter - I "enjoyed" reading your blog. I agree with your theory but I don't want surgery. I had looked at HFTU when originally diagnosed but that treatment is restricted to "in-capsule" prostates. Of course, due to randomisation there is no indication of what one may be allocated but it seems to me, perhaps wrongly, that SOC is what I have been offered, and intervention arm 2 seems to be very similar. Cheers.

 

I think the difference is that SOC would be Chemo and ADT and not normally give the treatment to the mets that you seem to have been offered. What you don’t seem to have on offer is any radical treatment of the primary that the ATLANTA trial does offer. If randomised to Intervention arm 2 you would have the choice between RP or RT so would not have to have an operation. You are of course also able to stop being part of a trial at anytime.

User
Posted 24 Apr 2021 at 10:12

It always seems odd when the North Lakes are classed as North East. In reality Carlisle is closer to Newcastle than Preston or Manchester. I noticed when I had my op South Lakes were referred to Blackburn for the op and we were referred to Preston.  I was offered robotic at Blackburn but didn't want the delay as the Preston surgeon gave me a quick assessment then op date, or my wife driving there in mid December.

User
Posted 14 May 2021 at 11:37

Originally Posted by: Online Community Member
I was notified of CT scan appointment for May 26. What are personal experiences of others? My oncologist said it was to confirm screening - is it possible that it will identify other problems?

It's pretty common for these cancer scans to show up other issues: think of it as a "body MOT". When I had my scans for prostate cancer, the scan also found an unrelated kidney tumour AND an aneurysm that I apparently could have dropped dead from at any moment. All three now sorted, thankfully. 

Chris

 

User
Posted 21 Jun 2021 at 15:38

Hi Cayambe,

PSA looks good. I think mine dropped to 0.8 from 24 in the first three months and went on to become <0.1. I don't know if yours will keep dropping it's looking like it is levelling out, but I would say it is good.  

36 Grays in 6 Fractions. Well the total dose they intend giving you is 36 Grays. I can't remember the exact definition of a Gray, but it is just a unit of radioactivity. More interesting is how much they are giving you. I think in the old days they used to give about 80gy then it went down to about 50gy and it looks like they are trying to reduce it further. (they can do this because it is better targeted, in the past half of those Grays were missing the cancer and damaging other organs instead).

The 6 Fractions just means you will have 6 treatments and each will be 6 Grays each. Quite interesting because in the past they only gave between 2 and 3 Grays at a time. Giving fewer more intense doses is a topic of debate, it is certainly more convenient to only have to go to hospital 6 times rather than 20.   

Dave

User
Posted 21 Jun 2021 at 22:02

I don't know if they will target the mets. If they are very close to the prostate they may be zapped at the same time.

If they don't treat them then they will presumably become the site from which further cancer cells will spread.

If they do treat them they really need to be zapped more than once, as they are only giving you 6 fractions I can't see how or when they will do the mets unless they are done at the same time. 

If RT starts in September, I think it is most likely you will be fine by Christmas. I think the side effects are proportional to the total dose not the strength of each fraction (unless they gave you all 36 grays in one go, in which case I think you would come out the machine smelling like a bacon sandwich).

Side effects are worse towards the end of RT and a few weeks after, so early November may be when they are at the worst, it could involve fatigue, or minor bleeding from bowels. I wouldn't book an expensive holiday just in case you can't go, but you might want to book a cheap holiday and accept you may lose the money if you do have side effects.

Hope the July holiday goes well pandemic permitting. 

Dave

User
Posted 21 Jun 2021 at 23:45
It is called hypofractionated radiotherapy and this may seem counter-intuitive but the higher the dose & fewer the fractions, the less side effects (up to a point - go too high with the dose and as Dave says, bacon sandwiches). 30 years ago, they were giving 36Gy in 6 fractions over 3 weeks (so a visit to the hospital twice each week) as a radical (curative) treatment regime. More recently, the Stampede trial has tried 36Gy over 6 weeks for men who are metastatic - the RT was only targeted to the prostate and not the mets, I think. Data suggested that it didn't provide any great benefit over 55Gy / 20 fractions but had fewer side effects than 74Gy / 37 fractions.

Has the onco said anything about it being part of a trial? It may just be their preference but if a trial, that should be explained to you & your consent sought.

Christmas looks good, then, but if going somewhere sunny, you will need to use factor 50 around your midriff or keep your shirt on.

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

User
Posted 30 Jun 2021 at 12:54

Have you tried AllClear, WorldFirst or Insurewith?

Ido4

User
Posted 19 Aug 2021 at 16:42

PSA looking good.

I think I would ask what the plan is for the three mets? Are they to be targeted?

Dave

User
Posted 31 Aug 2021 at 00:29

Until recently if you had distant mets. The only treatment on offer was HT (plus chemo and stronger HT) and this would never have been curative.

It seems now that RT is being offered and I presume this will include the mets. I do not know if this is intended to be curative, to me it seems a long shot, but maybe treatment is more effective now a days. 

With HT alone I think it is pot luck how long you will survive. How much extra life you would get from RT, I have no idea, for the sake of argument I am going to say two years, but that is just picked out of the air at random. Anyway I can see little disadvantage to RT, the side effects are usually minimal and for a few more years of good quality life I think I would give it a go. 

 

Dave

User
Posted 31 Aug 2021 at 13:00
If they target the pristate bed and distant mets, they are aiming for a long remission. If they target just the prostate, they are still aiming to slow the cancer down and give you a longer brighter outlook.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Sep 2021 at 14:24
I had a very positive meeting with the oncologist this morning.

1. He is pleased with PSA at 0.07 and testosterone not being measurable.

2. He recommended RT to further extend the benefits of HT.

3. RT will be on prostate beds and sem. visceral glands that may be affected. 3 mets mat be treated later on.

4. The RT will be EBRT - VMAT. (volumetric-modulated arc therapy)

5. Treatment 6 weeks / 6 GY

6. Next stage - planning session

7. RT to start late September / early October.

8. My staging T3bNiMIb GL 4 +4

9. Taluzoparib potential option at later stage.

10 HT for rest of life, with change if one becomes ineffective.

11. Prognosis - who knows but no reason it cannot be 10 to 15 years (he had patients that morning that had been under treatment since 2007).

12. RT side effects likely to be bearable and short lived - mainly bowel and urinary issues.

User
Posted 02 Sep 2021 at 11:30

Hi, i had a mtg wth onco to 'sign off' for RT, then a session with nurse to go over what happens, then the CT planning scan session... Gap between CT planning and RT start circa 3 weeks for me, but guess that will differ for each individual case and machine availability. 

Cheers,

Nick

User
Posted 02 Sep 2021 at 14:37

John had his planning scan about 4 weeks before the RT started. The onco team uses the planning scan to write the computer programme for your personalised (aka modulated) RT.

Edited by member 02 Sep 2021 at 14:38  | Reason: Not specified

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

User
Posted 03 Sep 2021 at 17:30

Good news Cayambe, I like this new philosophy of fewer high dosage treatments. I had to go 15 times fortunately it wasn't too far from where I live, but only going once a week would have been nicer. I certainly would not have liked the old regime of 37 visits.

Dave

User
Posted 13 Sep 2021 at 16:05

I had 15×2.75 gy. I don't think many on here have had the hyper fractionated version which you are having, though it seems that is the way forward. Anyway for me with the old fashioned fractioning no problems at all.

BTW excellent psa result. 

Dave

User
Posted 21 Sep 2021 at 18:20

I'm glad it is going well.

Don't take any supplements which are anti-oxidants RT works by increasing free-radicals which damage DNA in particular cancer DNA. 

Dave

User
Posted 09 Oct 2021 at 02:43

Nice PSA result. They are big doses of RT so no wonder you are tired. Still half way through now.

Dave

User
Posted 09 Oct 2021 at 10:29
Off the top of my head, I can't think of another member that has had the 6 x 6Gy regime who could give you any steer on how they found it. You are a trailblazer!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Oct 2021 at 10:45

Originally Posted by: Online Community Member
I mentioned this to the radiation technician and she advised me not to be surprised if I found my PSA rising during RT to then go lower after completion of the course. What is the experience of others on this issue;

I expressed interest in knowing my PSA during radiotherapy, and they said they wouldn't do that - it would scare me. Well, they did do it half way through when taking bloods for other things, and contrary to what I was told to expect, it went lower, but because the hospital which did the radiation used a different lab with less accurate PSA testing, I can't really compare it accurately with all my other PSA tests as it was off the bottom of their measurement range. My PSA a few hours before I started RT was 0.12, halfway through it was <0.1 (different lab from normal), and next reading 4 months after RT, it was <0.01

User
Posted 09 Oct 2021 at 12:30
Good to hear that it's been reasonable so far. Side effects are cumulative with RT, and generally peak around 10-14 days after treatment ends (at least with daily RT - don't know if it's different with yours?). I found that after the peak things did subside quickly.

Very best wishes,

Chris

User
Posted 04 Nov 2021 at 16:35
PSA stays at 0.03 which is a good result I think. For the first time in 9 days post last fraction I feel ok. Peeing a lot but a lot less tired to the extent I worked all day on policy documents and i will go out for a couple of pints and some cumberland sausage.
User
Posted 04 Nov 2021 at 19:25

Hi Cayambe. I have been following your journey as it is similar to my husband's who was diagnosed in June G9 T3bN1M1 PSA 75. He started on bicalutamide then zoladex and now Enza also. PSA now 0.6

Radiotherapy begins on Tues 9th, once a week for 6 weeks at Oxford's Churchill hospital. Your posts have given me hope and encouragement. OH is feeling well at present although tired at times. He's not one for forums. I however, prefer to connect with others in a similar situation and appreciate your posts as well as others on this site...a great resource. 

I am pleased you are picking up and hope you continue to improve post radiotherapy. 

 

Edited by member 04 Nov 2021 at 19:25  | Reason: Not specified

User
Posted 11 Nov 2021 at 22:49

Hi Cayambe, Always good to hear positive news. Sounds like your treatment has worked well. It's great that you have managed 7km. Impressive! Onward and upward then. Are you sure you don't want to attempt the Cumbrian Way?

OH had his first fraction of 6Gys on Tuesday. Looking forward, his last session is scheduled for Dec 14th so I'm thinking we will prob have a very low key Christmas. We are lucky to have both our daughters and their families within walking distance of us. Close enough to pop in and pop out again if it gets too much. 

Wishing you all the best. Thanks for all your posts. 

 

 

User
Posted 11 Nov 2021 at 23:05

The Cumbrian way is to sit on the couch and do nothing 😂. I am negotiating a short part of the Northumbria coastal route - say 5 miles!  I hope that you manage to have a nice Christmas. If it goes the same way as me, OH  may feel a little more animated by the 24 th.  If he goes as pale as I did he can play the ghost of Christmas past, but timing will  be crucial as he will quickly  recover his normal complexion. 

User
Posted 12 Nov 2021 at 00:45
Great result Cayambe 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Feb 2022 at 11:22

Great news. Long may it continue 👍🏽

User
Posted 28 Mar 2022 at 16:37

Enjoy Spain and the birthday celebrations.

Ido4

User
Posted 06 Dec 2022 at 22:52
Sounds like a perfect way to spend Christmas - have a great time!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Dec 2022 at 21:32

Nigel, this thread is nearly two years old. Cayambe started treatment a long time ago!

Cheers,

Chris

User
Posted 22 Feb 2023 at 14:42
Have you spoken to the PCUK nurses? The charity did some research on HT induced fatigue 4 or 5 years ago and may have suggestions
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Feb 2023 at 16:36
Really good news on the blood results.

Hope you can mange to get the medication sorted to help with your fatigue and muscle/bones aches.

Best wishes

Elaine

User
Posted 02 Jun 2023 at 18:10

Blood test earlier this week - PSA and testosterone not detectable. Reducing daily xtandi from 160 mg to 120 mg has certainly reduced side effects. Thank you NHS. Continue with monthly blood tests and 3 monthly telephone call with oncologist that lasts about 2 minutes. 

 

 

 

Show Most Thanked Posts
User
Posted 31 Jan 2021 at 20:05
Quite often they do the biopsy same day depending on what they immediately see on scan ! Depends on your area. I had both done same day aged 48 ! Best of luck on the day !
User
Posted 31 Jan 2021 at 20:25

I think my biopsy was about two weeks after MRI. I'd be surprised if they did it the same day as you may have to take antibiotics or have anaesthetic (probably local) so there may be issues about driving home etc.

It can be very different in different areas. 

Dave

User
Posted 31 Jan 2021 at 20:52
Do you mean what can you expect from the scan? It'll be an MRI scan. Have you had one of those before?

Best wishes,

Chris

User
Posted 31 Jan 2021 at 21:37
It will be my first MRI scan. I guess it will show if there is a tumour and its broad characteristics and the biopsy will indicate its scale and options / nature of recommended treatment, if any.
User
Posted 31 Jan 2021 at 21:54

Lying very still for about 20 minutes. More noise than you would expect. Probably an injection of "contrast". For me about a week later I was called in to be told the results that the image showed a suspicious area which was just beyond the prostate and a biopsy was recommended. 

I don't think the MRI can ever be conclusive for cancer, I think all it shows is areas with different type of soft tissue, and if some tissue is somewhere it shouldn't be it needs investigating, which is where the biopsy comes in. 

Edited by member 31 Jan 2021 at 22:27  | Reason: Not specified

Dave

User
Posted 31 Jan 2021 at 23:44

Ian,

As said, for the scan you just lay still inside the MRI scanner. I think mine took 40 mins. It's completely painless, but they may want to use a Gadolinium contrast dye, in which case a machine will inject it towards the end of the scan (they'll tell you when it's going to happen, but it's painless). If you have the contrast dye, drink lots of water immediately afterwards so you pee it out as quickly as possible.

It's very unlikely the scan will be analysed while you're there. What usually happens nowadays is you'll get an invite to a one-stop-shop up to a week later. The invite is usually sent out before the scan is analysed, so it can't tell you anything.

You'll also get an invite for nuclear bone scan. For that, you get given an injection, told to go and relax and drink water and pee for a couple of hours, and then come back to be photographed with a gamma-ray camera, which I think took around a minute. One word of warning, try not to pee on your trousers, as it will make them light up bright white in the images!

At the one-stop-shop, they'll have the MRI scan result, and decide what to do next, such as a biopsy if appropriate. They try to do all the diagnostics on that visit, so expect to stay in the hospital for the rest of the day.

In know in a local NHS hospital, they've moved the one-stop-shop to a local COVID-free private hospital. COVID may disrupt some of the normal timings and orderings.

User
Posted 01 Feb 2021 at 09:34
For an MRI scan you lie down on a table which then pulls you inside the scanner, which is basically a hollow tube with you in the middle. It's VERY noisy, so you'll be given headphones to wear both to reduce the noise and allow the operator to give you instructions. You're given a "panic button" to hold so that if you feel uncomfortable you can press it and the scan will end (people with claustrophobia can have problems with MRI scanners). Basically you just lie still for half an hour or so, and that's it. You won't feel anything.

Best wishes,

Chris

User
Posted 01 Feb 2021 at 09:37
Not everyone gets a nuclear bone scan, Andy. I had a full-body "skeletal" MRI scan instead. Apparently it's considered more sensitive for picking up mets than the nuclear scan. Probably depends where you live and what equipment is available.

Chris

User
Posted 01 Feb 2021 at 10:20

I felt a little uncomfortable in the scanner. I have since read up on MRI induced vertigo, not all people get it, and maybe I am more susceptible as I have hemochromatosis and a high iron content in my body. 

Dave

User
Posted 01 Feb 2021 at 14:18
Many thanks for all the information and advice.

If you don't mind I will chronicle my experience so that anyone at the same stage in the process can gain an on-going indication of the process.

As I noted previously, my need to pee started several months ago but was not a great issue when I was on holiday in August - I jusr made sure my bladder was empty before going out. However, I got my first "natural" remedy in September ( A.Vogel Prostasan Saw Palmetto 30) but that did not reduce urination pattern. I then bought Solgar Gold Specific Prostate Support Cápsulas vegetales which initially worked and in late December I ordered Prostagenix (expensive) from the USA. That is still en route. Meantime my Dr said not to use natural remedies and prescribed tamsulosin, which is effective.

The Dr did ask me if I had any pain in my pelvis or arms. For a couple of years I have felt occasional aching in my hips that I put down to arthritis or rheumatism. I have suffered from gout over a number of years. Despite taking allupurinol full time for the past 12 months until December I had constant gout attacks - some severe in terms of pain - despite the uric acid being down to to normal. Colchocine aided that but predisolone (highly effective ) was needed twice. I did google gout / prostate and there has been some research but it was too complex for me to understand

Once again, thankyou.

Ian

User
Posted 01 Feb 2021 at 14:19
p.s. I am 67
User
Posted 03 Feb 2021 at 11:21
It turned out that it was consultation and not a scan. But surgeon did do DRE and found prostate hard and concluded it is cancer. Within 2 weeks or so I will have MRI and biopsy and possibly bone scan. From what he was saying he implied that it was advanced i.e. if any pains in legs etc to go straight to emergency.
User
Posted 03 Feb 2021 at 13:16
If they were certain it was advanced, they wouldn't bother with a biopsy but would go straight to the bone scan. The fact that you're having the full suite of diagnostic procedures strongly suggests that it's all very much up in the air, still. Don't assume the worse - wait for the diagnostic process to be completed and then you'll know where things stand.

Best wishes,

Chris

User
Posted 03 Feb 2021 at 18:13
Don’t waste your money on any more quack remedies, the drugs to help with urgency / frequency are Tamulosin and / or Finasteride from your doctor.

And don’t assume the worst, as a PSA like yours can sometimes be down to a prostate infection.

Now you will have an agonising wait for your MRI, and then another wait to hear the results of the scan. If there is any suspicion of cancer there will be a biopsy - another wait - and finally a consultation (maybe by phone these days).

So you can look to a several week wait before you know what’s what, but you may console yourself that if you do indeed have prostate cancer, it is usually slow-growing, so a delay of a few months before the start of treatment will be neither here nor there. Nevertheless, you will be on a cancer fast-track, so the NHS will be going as fast as they can under the present difficult circumstances

Best of luck.

Cheers, John.

User
Posted 04 Feb 2021 at 13:51
MRI scan scheduled for next Tuesday. I feel well and positive ... so long may it last!
User
Posted 05 Feb 2021 at 09:03
Just received appointment for whole body bone scan on February 15.
User
Posted 06 Feb 2021 at 17:09
NHS now being efficient - biopsy scheduled for February 23. I don't know whether to be happy or worried! But I guess it is better to get uncertainty out of he way and move on with whatever treatment is needed.

I ordered the tool kit on Wednesday and it arrived Friday. Again - excellent. The Surgeon suggested I do not read message boards - bt to date it has been a great help. Thank you

User
Posted 06 Feb 2021 at 18:47
There is a lot of useful information on Message Boards, particularly this one but patients should always put what their clinicans say above anything on Boards and remember that individual experiences related may be quite different to their own. PCa is a complex disease of many types and often with varying results from treatment.
Barry
User
Posted 06 Feb 2021 at 19:51
Sounds as though the diagnostic process is proceeding apace, which is good. People generally feel much better about things once the result's through - waiting for test results is never easy.

Best wishes,

Chris

User
Posted 06 Feb 2021 at 20:36

I don't remember much about the tests I had but I do remember me 'peeing in a bucket' and having a biopsy, then being operated on to have my Prostate removed by the Da Vinci Robot in April 2015. It worked for me and have never had a problem since.

User
Posted 09 Feb 2021 at 18:13
The MRI scan completed without incident - in and out of hospital in just over an hour including 30 minutes in the new scanner. No problems at all; I thought I would be enclosed but I went head first into and beyond the scanner so had a lovely view of the ceiling. Noisy but not an issue. Marvellous NHS technicians. Now to await the outcome and then the bone scan next Monday.
User
Posted 15 Feb 2021 at 09:37
I was due a bone scan today but on Friday heard that the appointment was cancelled as the scanner in Carlisle had broken down. So it next week's biopsy is the next step. I don't expect that whatever process that is needed will not be delayed.

Did anyone drive to and from the biopsy? (Hospital is 5 miles away)

User
Posted 15 Feb 2021 at 10:28

I did and it wasn't a problem

User
Posted 15 Feb 2021 at 15:46

I normally use a motorbike for hospital appointments as the parking is easier. On biopsy day I decided to take a taxi, just in case. I think I would have been fine in the car, probably would have been fine on a motorbike but didn't fancy taking the risk.

Dave

User
Posted 15 Feb 2021 at 16:28
J had his biopsy on the way to work - driving was fine.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Feb 2021 at 21:40


I headed in to the one stop shop on 1st July 2020 following a 54 ng/ml PSA test the week before, and in three hours underwent a DRE, MRI scan, and a Biopsy.

I left with a four week supply of bicalutamide tablets, a T3 prostate cancer diagnosis, and the promise of Bone and CT scans in the very near future.

I was advised not to drive myself to the one stop shop.

The scans were both done on the same day 10 days later. Full marks to the NHS for efficiency.

Edited by member 17 Feb 2021 at 09:01  | Reason: Correct a spelling mistake

User
Posted 24 Feb 2021 at 15:55
I had the biopsy this morning and confirmation of cancer with a score of 5 (range 1 to 5) on scale I don't recall the name of.

Got home to find an appointment for bone scan next week in Newcastle - about a 90 minute drive so it will be a full day out.

The biopsy uncomfortable but bearable.

I drove to and from hospital without problem. Now 4 hours later taking it easy with slight discomfort around the anus.

Next step see the results of all in 2 to 3 weeks and decide treatment,

My brother insists that we may all choose where to be treated -arguing that Carlisle would be unlikely to be the best option. What do others think?

I don't know how long a waiting list there is for whatever treatment - anyone have ideas on going private (I am by no means wealthy and do not have insurance but maybe it would be money well spent)!?!

User
Posted 24 Feb 2021 at 16:46

I think wait for your full diagnosis first - the multi-disciplinary team will look at your case in detail and determine which treatments are available and suitable to you. Carlisle may only offer treatments that are available in Carkisle; you can then do some research and if there are treatments that interest you and available at Newcastle, you can ask for a referral.

We self funded for private treatment; it is nice to have a private room and a coffee machine at clinics but it cost a fortune and the treatment failed so J had to have salvage treatment 2 years later. The usual aftercare and support is not always available on the NHS for patients who go private. Lots of things to think about but get your full diagnostics first.

On the flip side, my dad paid £25k 23 years ago for nerve sparing surgery (which wasn't available on the NHS then) and he has only had a recurrence in the last 2-3 years 

Edited by member 24 Feb 2021 at 16:49  | Reason: Not specified

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

User
Posted 24 Feb 2021 at 17:27
And I had private surgery for my kidney cancer but DIDN’T have a private room. I was in an NHS urology ward in an NHS hospital, because the private hospital didn’t have the Da Vinci robot. Private treatment doesn’t necessarily equate to more comfortable rooms, etc.

Chris

User
Posted 10 Mar 2021 at 18:40
I had a bone scan yesterday and today I pre arranged appointment with consultant urologist.

1. He confirmed PC with prostate outside capsule.

2. Gleeson 4 + 4

3. T3/4N1M1B

4. From tomorrow hormone tablets Biicolutomide 50 mg for 28 days.

5. On 14 th day Zoladex injection = 10.8 mg

6. Radical treatment i.e. surgery not possible

7. Indications it may have gone into pelvic bone but awaiting bone scan results

8. 5 years max survival but depends on new treatments!

Thoughts and advice please.

Thank you

User
Posted 10 Mar 2021 at 20:33
Don't believe the 5 year survival thing - the urologist sounds like a bundle of laughs. We have men here with your diagnosis who are still living a good life 10 years later and in a few cases, 15 years or more. I hope that the urologist has now referred you to an oncologist?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Mar 2021 at 20:52
He says he will make an appointment with an oncologist - I guess when bone scan results are available.
User
Posted 22 Mar 2021 at 13:02
I was expecting an appointment with an oncologist but as I had heard nothing last Wednesday I sent a gentle request for information to my specialist nurse. No reply received. But this morning received letter for a telephone appointment with a second urologist (based in Whitehaven).

I do not know the results of the bone scan.

However, I want to progress things and, after consulting informally with Imperial College, to be referred to an oncologist in Newcastle working with the Atlanta trial.

I don't like to press as I understand the situation, but is it normal to have an appointment with a second urologist?

Apart from that everything goes well. I am on my 10 th day of hormone tablets (no detectable side issues) and will get the zolodox injection on Thursday. When may I expect side effects (if any) to appear?

I feel fine in fact apart from the peeing as good as I have done over the past 2 or 3 years. I'm getting fit (this week up to 10,000 paces on two days and 4 days on exercise bike for 30 minutes raising pulse to about 120).

User
Posted 29 Mar 2021 at 16:47
The urologist confirmed I have mets in pelvis and right lymph, which is what I expected, but positive as he says it is not widespread. I will speak to the local oncologist soon, but I have asked to be referred to Freemans Newcastle to see whether I may be part of the ATLANTA trial.

In the meantime, I continue to feel very well, and I am getting fitter through walking and light cycling. No side effects from hormone treatment yet, but probably too early to tell with only 4 days since the zolodox injection.

Are there any specific questions I should ask the oncologist?

User
Posted 29 Mar 2021 at 18:31
All I can think of is

- if you are not accepted on ATLANTA, does the local onco have a view about the benefits/ drawbacks of early chemo or enzalutimide?

- who will have routine responsibility for your PSA tests from now on - the hospital or GP?

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

User
Posted 15 Apr 2021 at 12:40
April 14. I met with an oncologist. As the appointment was made from Newcastle Freemans to meet in Carlisle Infirmary I assumed it was related to my interest in the ATLANTA trial. I was wrong; yesterday was the first day that Newcastle assumed responsibility for cancer treatment in Carlisle and the consultant was not aware of my interest in Atlanta.

He confirmed a shift in approach, initially due to restrictions on visiting hospitals due to COVID, with the adoption of a more "aggressive" treatment with a course of Enzalutamide to start as soon as they could get the prescription sorted, with monitoring after 8 weeks to monitor side effects. Then towards the end of the year, 6 factions of radiotherapy over 6 weeks. i.e. no chemo.

This to treat 3 spots (mets) - two in left hip (one very small) and one (very small) in right scapula.

CT scan to be arranged to check organs. PSA testing every 3 months - which he said was a good tool to measure status.

As a result the situation is clearer; I was uncertain of the status and now I think that it is as good as I could have expected.

He was ambivalent about Atlanta - but I said I would be interested in talking with the lead on this initiative in Newcastle. Lets see if he progresses that. I would be interested in the possibilities of ablation - but it is of course a randomised test and that would not be the guaranteed process.

I should meet with Carlisle specialist nurses within 10 days for blood tests etc.

Incidentally, I told a lot of people my condition and as requested by prostate UK recommended that men consider if the need to make contact with a Dr. I know of several who did so; as a result my brother in laws brother is now booked in for a biopsy

User
Posted 15 Apr 2021 at 13:29
Seems to me that the treatment plan you have been offered is far better than a place on Atlanta - a no brainer, almost?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Apr 2021 at 13:30
Thanks for that Lyn - what are your thoughts on Atlanta?
User
Posted 15 Apr 2021 at 14:47
The problem with these trials, as you mentioned yourself, is that you only have a 50/50 chance of receiving the treatment being trialled. The treatment plan you've been offered sounds a good one.

Best wishes,

Chris

User
Posted 15 Apr 2021 at 16:38

Originally Posted by: Online Community Member
Thanks for that Lyn - what are your thoughts on Atlanta?

 

It's a 30/30/30 risk isn't it.

- 33% chance that you will have RP with all the associated certain and potential side effects but unlikely to be curative

- 33% chance that you will have RT with all the associated certain & potential side effects but unlikely to be curative 

- 33% chance of focal therapy with fewer side effects but very unlikely to be curative

The downside of your proposed treatment plan is that there is no chance at all of it being curative but you can be sure of avoiding many of the side effects that most impact on quality of life - incontinence, for example. 

 

Whichever way you go, you seem to be almost certain of getting targeted RT to the known mets. Your call, and not an easy choice but I think my OH would want to avoid as many side effects as possible. 

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

User
Posted 20 Apr 2021 at 14:24
Lyn - will RT target the prostate or be limited to the mets? I have a telephone consultation with ATLANTA and would like to understand beforehand..

Anyone have any thoughts on apricot kernels??? Last week the oncologist said he had no issue with people taking "natural" remedies at the same time as conventional treatment.

User
Posted 20 Apr 2021 at 17:08

There are three arms to the ATLANTA trial the control arm which is Standard of Care only and two Intervention arms

Intervention arm 1: Focal therapy to the primary prostate tumour 

Intervention arm 2: Either RP or curative dose RT. The choice depends on which they believe would be more successful and also your preference for the potential side effects the different treatments pose. 

 

If randomised to either of the intervention arms then you would also be offered SABR to the metastases you have.

 

I was randomised to Intervention arm 2 and awaiting the MDT meeting following a recent MRI and PSMA PET scan 

User
Posted 20 Apr 2021 at 18:30

Originally Posted by: Online Community Member

Anyone have any thoughts on apricot kernels??? Last week the oncologist said he had no issue with people taking "natural" remedies at the same time as conventional treatment.


If you like apricots, go for it, but there is no reliable data to support the idea that any dietary supplements either help or hinder an existing case of prostate cancer (or any other form of cancer).

Best wishes,

Chris

 

User
Posted 20 Apr 2021 at 20:49

Hi,  I haven't heard of Atlanta before but 2 of the cases are what I'd have dreamt of having if my case had been T4.

I'd have gone for RP with RT to the mets as my first choice.  RT to the prostate then RT to the mets as second.   I wouldn't want HIFU to the prostate with a high grade PCa although I could perhaps be persuaded.   Don't imagine I have any medical knowledge to support my choices though, it's intuition based and intuition can be wrong.

My theory is that getting rid of the prostate is removing the big generator.   If the minors can be dealt with they'll take longer to cause problems. Presumably you'll still get hormones.   You never know how it will work out but that's my personal theory.

I guess you've seen this description of Atlanta, I think it answers some questions you asked though.

http://imperialprostate.org.uk/atlanta/

As others have said the hospital seems to be looking after you well and I can understand them being reluctant.   I would have thought they could be supportive as it sounds a significant trial and lightens their load. 

It's a gamble going on a trial in that it goes out of your hands and into the realms of chance.  It's an interesting thought well worth thinking about in my opinion.

I wish you all the best, Peter

User
Posted 20 Apr 2021 at 21:28
Many thanks Peter - I "enjoyed" reading your blog. I agree with your theory but I don't want surgery. I had looked at HFTU when originally diagnosed but that treatment is restricted to "in-capsule" prostates. Of course, due to randomisation there is no indication of what one may be allocated but it seems to me, perhaps wrongly, that SOC is what I have been offered, and intervention arm 2 seems to be very similar. Cheers.
User
Posted 20 Apr 2021 at 21:45

Originally Posted by: Online Community Member
Many thanks Peter - I "enjoyed" reading your blog. I agree with your theory but I don't want surgery. I had looked at HFTU when originally diagnosed but that treatment is restricted to "in-capsule" prostates. Of course, due to randomisation there is no indication of what one may be allocated but it seems to me, perhaps wrongly, that SOC is what I have been offered, and intervention arm 2 seems to be very similar. Cheers.

 

I think the difference is that SOC would be Chemo and ADT and not normally give the treatment to the mets that you seem to have been offered. What you don’t seem to have on offer is any radical treatment of the primary that the ATLANTA trial does offer. If randomised to Intervention arm 2 you would have the choice between RP or RT so would not have to have an operation. You are of course also able to stop being part of a trial at anytime.

User
Posted 23 Apr 2021 at 13:58
I started on enzalutamide today; I will keep people posted as when side effects are felt. I have not been contacted by ATLANTA so may email them to get a coupe of clarifications. Carlisle is in a bit of upheaval at the moment due to Newcastle recently taking over, to the extent that a second oncologist phoned me unaware that I had met his colleague last week.
User
Posted 24 Apr 2021 at 10:12

It always seems odd when the North Lakes are classed as North East. In reality Carlisle is closer to Newcastle than Preston or Manchester. I noticed when I had my op South Lakes were referred to Blackburn for the op and we were referred to Preston.  I was offered robotic at Blackburn but didn't want the delay as the Preston surgeon gave me a quick assessment then op date, or my wife driving there in mid December.

User
Posted 14 May 2021 at 11:09

I was notified of CT scan appointment for May 26. What are personal experiences of others? My oncologist said it was to confirm screening - is it possible that it will identify other problems? Apologies - I just searched this web site and found the answer

Edited by member 30 Jun 2021 at 12:09  | Reason: Not specified

 
Forum Jump  
123>
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK