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

Notification

Error
12>

Focal HIFU

User
Posted 23 Jan 2020 at 18:48

A new thread for a new treatment for my husbands Prostate cancer.

His first focal treatment was in March 2017 and is fully detailed in my ‘Focal Laser Ablation’ thread. This treatment saw his PSA drop from 3.56 to 1.32  after a FLA on a large Gleason 6 (3+3) and a couple of small areas on the other side.

unfortunately 2019 saw an increase in his PSA to 1.6 leading to a MPMRI scan and a biopsy showing a much smaller tumour but now graded as Gleason 7 (3+4).

All consultants agreed active surveillance was no longer an option ( My husband is 56) and the options available were:

RP

repeat trip to Florida for a second FLA

Focal HIFU in London

He opted for the focal HIFU with our monitoring professor having done it this morning with him going to surgery at 10.00am

The report was it all went well with nothing unexpected and he was discharged at 5pm tonight wearing a catheter ( no bag in the day - he has a tap which he is finding much better. He has a night bag and stand plus a day bag should he want to use it.

Discharge meds:

5 days of anti biotics

diclofenac 

instillagel for tip 

tamsulosin for flow

all seems a bit familiar!

we are having a long weekend in London so no big journey with the catheter.

all good at this point. BUPA have been fine to cover this one! 

 

User
Posted 24 Jan 2020 at 14:28

day 1 of recovery from the Focal HIFU yesterday and all going well.

1 disturbance in the night as he thought the catheter wasn’t draining into the bag ( emptied bag, refixed and all seemed well. A was up before me, showered, washed the bag out, moved back to the ‘flip flow’ tap before waking me to go to breakfast.

He has a slightly sore throat and is still using the instigel stuff occasionally plus paracetamol and diclofenic. Anti biotic continues. The prostate nurse rang from the hospital to check up on him ( we have her number too) which was reassuring. After breakfast we had a stroll. He is slow and has an unusual gait but felt unconcerned.

We stopped for coffee ( no caffeine for him) and then back for loo and into pj’s for a rest.

He has booked a restaurant very locally for dinner at 6.30 so trying to enjoy the long weekend whilst resting plenty. When he has a pee ( opening the flip lock) the bladder/ prostate are a tad painful.

As ever I am logging so as to remember what’s what! 

 

 

User
Posted 22 Feb 2020 at 20:19

One month on from A’s focal HIFU and I am pleased to report a full recovery. Tablets are no longer needed for sex and incontinence was never an issue.

His recovery has been much quicker than after his Focal Laser Ablation (FLA) however that was a much larger area treated than the January HIFU.

 No impact therefore on his quality of life re work, continence and erectile function. His orgasm has been dry since his FLA in 2017.

Next step PSA in April. We are completely optimistic that this will be good news so are getting on with life on that assumption.

Thanks all

Clare

 

 

User
Posted 06 Sep 2020 at 04:04
Am hoping for great results for 'A' and Bill as we all are.
Barry
User
Posted 23 Jan 2020 at 18:48

A new thread for a new treatment for my husbands Prostate cancer.

His first focal treatment was in March 2017 and is fully detailed in my ‘Focal Laser Ablation’ thread. This treatment saw his PSA drop from 3.56 to 1.32  after a FLA on a large Gleason 6 (3+3) and a couple of small areas on the other side.

unfortunately 2019 saw an increase in his PSA to 1.6 leading to a MPMRI scan and a biopsy showing a much smaller tumour but now graded as Gleason 7 (3+4).

All consultants agreed active surveillance was no longer an option ( My husband is 56) and the options available were:

RP

repeat trip to Florida for a second FLA

Focal HIFU in London

He opted for the focal HIFU with our monitoring professor having done it this morning with him going to surgery at 10.00am

The report was it all went well with nothing unexpected and he was discharged at 5pm tonight wearing a catheter ( no bag in the day - he has a tap which he is finding much better. He has a night bag and stand plus a day bag should he want to use it.

Discharge meds:

5 days of anti biotics

diclofenac 

instillagel for tip 

tamsulosin for flow

all seems a bit familiar!

we are having a long weekend in London so no big journey with the catheter.

all good at this point. BUPA have been fine to cover this one! 

 

User
Posted 27 Jan 2020 at 19:57
It just goes to how men can experience varying side effects following treatment, any treatment, but in this case HIFU. I only produced a miniscule amount of blood with this procedure until my catheter was removed after about 6 days, It's difficult to quantify but for my first pee after it had been removed it including about 2 teaspoonfuls of sort of pent up blood in the urine which then quickly cleared. Thereafter it was clear and no problem thereafter. Also, I was so much more comfortable after the catheter had been removed.

It is interesting to learn how men are affected by treatment but I have said on several occasions for the benefit of those considering treatment not to feel their experience necessarily will be the same as others who have related theirs,.

Barry
User
Posted 22 Feb 2020 at 21:12
Great news Clare. Best wishes as ever. It seems you’ve taken a far less invasive course with equal results. I’m glad for you both x

If life gives you lemons , then make lemonade

User
Posted 22 Feb 2020 at 21:40

Thanks Chris,

We know we may end up with a more radical treatment but we prefer the ‘May’ and if that day comes feel happy that we have tried the alternatives first.

You continue to inspire Chris. Your pioneering on recovery and challenge to demand an individual  centred  approach is very much admired.

Keep enjoying life! 

User
Posted 30 May 2020 at 12:27

Hi Clare,

Good luck with your husband’s PSA test on Monday, I hope he has a good result.

Onwards and upwards, as we all keep saying.

Ange x

User
Posted 04 Jun 2020 at 18:44
Lol , I was very friendly (still am ) with a young guy on here who also had RP at the same time as me. Trying to talk to him about psa was like he had never been to school. He just didn’t get 0.2 or 0.02 etc.

In a way I guess she was right not to comment. Many people don’t understand the difference between either.

I am on the electronic patient system EMIS and can get all my blood results online.

Nice to hear from you Clare

If life gives you lemons , then make lemonade

User
Posted 16 Jun 2020 at 07:56
I cannot work out WHY some Medical people are so secretive about test results. My GPs are inconsistent, sometimes it is all on my online record, other times "The Oncologist will tell you" Very odd.???

User
Posted 27 Jun 2020 at 20:32
Its crazy. By this time you are the expert, not just them! As a retired surgeon I would say there can be a spot of hubris.....
User
Posted 10 Jul 2020 at 23:29

Good luck for Monday.

Thankfully I dressed in shorts and tee for my MRI’s. Those magnets get warm apart from the circa 90’s techno tunez they emit  (is it just me?). I know what you mean about claustrophobia as it’s only something I developed later in life. Before my MRI I set up a mock MRI machine at home with same dimensions to get used to the confined space. Worked really well so I just focused on the sounds and closed my eyes. 

keep us posted!

User
Posted 12 Jul 2020 at 18:22
Hi Clare I’ve had a zillion scans as you know. Sometimes offered music with MRI but mostly not. I only have CT and Bone scans now. The CT is a much larger scanner and not claustrophobic but somehow there is a real fear when the electric voice says breathe in and hold then breathe out , and you can see and hear the radiation elements whirring around inside. I hate it as each full body scan is equivalent to 7 yrs natural radiation. I’ve had at least 6 now .....

The new MRI scanners at Southampton are as big as the CT scanners. No Claustrophobia at all. I’m mega brave with injections and canulars etc , even injecting my own penis , but I have to say the contrast canula can be very painful. I think it’s because of your arm position. In my case both raised above my head. It hurts. Best of luck.

I have both full body CT and Bone again 27th July. I think my run of luck has run out judging by crippling fatigue this last few weeks :-(

If life gives you lemons , then make lemonade

User
Posted 12 Jul 2020 at 23:53
Funny isn't it, how we all respond to things differently. I have a brain scan every 2 or 3 years and have never given it a thought until now. On the other hand, I had to wear a mask yesterday for the first time and found it to be the most horrific hour imaginable :-(

Fingers crossed for good news tomorrow for you, Clare.

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

User
Posted 14 Jul 2020 at 11:53

So sorry to hear your news Clare. Fingers crossed for A’s biopsy results.

Take care both,

Angexx

User
Posted 26 Aug 2020 at 23:42

Hi Bill,

Thanks for the post. I guess you are on full social distancing  as well?  A found the need to self isolate for the 2 weeks before his biopsy really tough so being able to do this two weeks together is a big improvement.

Saying that we are not confirmed for 4th as I believe it’s a big list due to a backlog, we were expecting to hear a definite yesterday or today but nothing so will chase again tomoz! A’s prof said they agreed it needed doing sooner rather than later so we have a hotel booked to do the last three days after the covid text,isolated and will stay in London until the catheter is out

My  advise is to ask for instigal for the catheter if they don’t offer it to you. It really really helped the catheter days! Fitted boxers by day and commando at night seemed to be the most comfortable! 

It will be weird for you guys having to go it alone on the day as before I’ve been there for support but not this time. 

They are the focal experts and as promised A had no side effects from the treatment in January .. a really quick recovery.  

Not long to go now and you are in safe hands. A big list is interesting as so few on here opt for it but clearly in the real world people do! 

Good Luck, I’ve found your thread now so will follow with interest

Clare

 

User
Posted 07 Sep 2020 at 23:00

Thanks for keeping us informed. I hope this one finishes it off, but even if it doesn't, A has managed to push the radical treatment a few years down the line. 

Dave

User
Posted 16 Sep 2020 at 07:54

Hi Clare

So sorry to hear how fearful you are while you wait for ‘A’s results. It’s this waiting that can get you down. My 6 months wait for my HIFU was worse for my wife and I than the op. No need to reply, I just wanted to show empathy . I have no symptoms just a wait like you to see if the HIFU has worked.

Bill

 

User
Posted 16 Sep 2020 at 13:17
It seems perfectly reasonable not to want to reply to people when you don't know the answer yourself so I don't think you should be apologetic about it. Ostriches are beautiful birds - do what is best for you, not for others.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Sep 2020 at 15:25

Good luck for A’s consultation on Monday Clare, have everything crossed for you both xx

User
Posted 21 Sep 2020 at 20:59
That’s great Clare. Let’s hope that will be that but as you say, keep monitoring. Good both A and I have got our HIFU s out of the way before this second wave of the virus that looks imminent.

Good luck for the future.

Bill

User
Posted 21 Sep 2020 at 23:35
Cause for cautious optimism!
Barry
User
Posted 21 Sep 2020 at 23:43

What a relief for you both.  Really pleased for you xx

User
Posted 22 Sep 2020 at 11:36

Really good news.

Ido4

User
Posted 22 Sep 2020 at 20:42

Great news!

I trust a bottle of claret is open :-)

All the best

Simon

Show Most Thanked Posts
User
Posted 24 Jan 2020 at 14:28

day 1 of recovery from the Focal HIFU yesterday and all going well.

1 disturbance in the night as he thought the catheter wasn’t draining into the bag ( emptied bag, refixed and all seemed well. A was up before me, showered, washed the bag out, moved back to the ‘flip flow’ tap before waking me to go to breakfast.

He has a slightly sore throat and is still using the instigel stuff occasionally plus paracetamol and diclofenic. Anti biotic continues. The prostate nurse rang from the hospital to check up on him ( we have her number too) which was reassuring. After breakfast we had a stroll. He is slow and has an unusual gait but felt unconcerned.

We stopped for coffee ( no caffeine for him) and then back for loo and into pj’s for a rest.

He has booked a restaurant very locally for dinner at 6.30 so trying to enjoy the long weekend whilst resting plenty. When he has a pee ( opening the flip lock) the bladder/ prostate are a tad painful.

As ever I am logging so as to remember what’s what! 

 

 

User
Posted 25 Jan 2020 at 04:51
Hi Clare,

Pleased HIFI went well and look forward to reading progress reports.

Barry
User
Posted 25 Jan 2020 at 10:25

Thank you Barry

2nd night with a catheter and night bag was uneventful. Sleeping through with 1 litre in the bag this morning.

The night stand keeps it all tidy and despite a remaining sore throat this am A feels well. I suggested a matinee at an Everyman cinema with sofas to see 1917 but sitting for too long is still worrying him so probably not a good suggestion. 

So last night was a short walk for a one course dinner and back for TV (feetup on couch style) and early night. 
All as expected so far...

User
Posted 26 Jan 2020 at 11:29

3rd night with catheter was almost uneventful other than a lot of whimpering around 6.00am when A apparently got a semi Nd that with a catheter in was not welcome apparently! This  morning A is walking a lot less like John Wayne but still slow.

4 nights with the catheter before TWOC is one more than the FLA but could be due to today being a Sunday.

We are back to the hospital for removal at 10.00am tomorrow and TWOC ( trial without catheter) procedure has been explained and sounds the same as Florida experience in that help has been taught to self Cath in case and being given a pre lubed self Cath kit.

 

Difference with meds in that A was already on a steroid in Florida ( prednisone) but no mention here in London plus was immediately on the 5mg cialis ( for blood flow apparently) however after the whimpering episode probs best not to have it plus he was affected by the side effects so stopped early last time.

 

So continuing with antibiotics, diclofenic and paracetamol atm

 

other difference is face to face time with consultant is lower here. Other than brief chat after anaesthetic wore off that all went well we are not due to see the Prof till 10th Feb.

Clare

User
Posted 26 Jan 2020 at 14:04

Missed this completely and had never heard of Trichmoniasis until this weekend

 

https://www.nhs.uk/news/cancer/prostate-cancer-linked-to-common-sti/


Apparently a self test is available in boots and it is often symptom less and more prevalent in the over 50's than any other age group.

interesting!

Edited by member 26 Jan 2020 at 14:04  | Reason: Not specified

User
Posted 27 Jan 2020 at 13:54

4th night with catheter completed. I was woken after midnight with what I thought was A singing but again it was whimpering due to unwanted blood flow causing pain!

otherwise uneventful and the TWOC went well with him passing 400 ml immediately and the bladder scan being clear. So repeat instructions given on how to self Cath and a pack given we had lunch with him feeling much less nervous about being knocked and we are now on the train home with our ‘focal HIFU mini break’ over!

 

MpMRI next on Thursday.

 

Clare

User
Posted 27 Jan 2020 at 16:20

Sounds like great progress. Excellent news!

i sympathise with the excess blood flow post procedure. I had this issue the weekend after my RP with catheter and was both in pain and happy/stunned. :-o

User
Posted 27 Jan 2020 at 16:51

Thank you TG. Yes good to know the blood is flowing but definitely not recommended with a catheter in..he is tender to pee now it’s out but 100% continent on the train journey and through coughs.

so far so good. Let’s hope the MR is good news..

User
Posted 27 Jan 2020 at 19:57
It just goes to how men can experience varying side effects following treatment, any treatment, but in this case HIFU. I only produced a miniscule amount of blood with this procedure until my catheter was removed after about 6 days, It's difficult to quantify but for my first pee after it had been removed it including about 2 teaspoonfuls of sort of pent up blood in the urine which then quickly cleared. Thereafter it was clear and no problem thereafter. Also, I was so much more comfortable after the catheter had been removed.

It is interesting to learn how men are affected by treatment but I have said on several occasions for the benefit of those considering treatment not to feel their experience necessarily will be the same as others who have related theirs,.

Barry
User
Posted 28 Jan 2020 at 09:21

Yes Barry a very good point as ever. This is just A’s personal experience.

First night with no catheter was uneventful and no retention was a relief as after the FLA having to self Cath in the night was stressful.

a is finding it is stinging when he pees however and he didn’t have that before. He is on his last day of antibiotics  and worried it’s an infection or is it just abrasion from the catheter? 

Anyhow up early and planning to go to the Villa match this evening. I will make him have an afternoon nap!

 

thanks

 

Clare

Edited by member 28 Jan 2020 at 09:22  | Reason: Not specified

User
Posted 30 Jan 2020 at 00:29

So Villa won. .. oh back to the HIFU.. after enjoying the match with our daughter A slept like a baby. When he got up for the loo I couldn’t hear him go and stressed he had overdone it and was in retention... I was thinking where had I put the self Cath stuff ., turns out he had sat down to per and all was well!

stress over.. appointment with MRI tomorrow .. no results just  initial scan so will have nothing to report.

 

 

User
Posted 30 Jan 2020 at 00:46
Can't say I am excited by the Villa win (each to their own) but good luck tomorrow 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Jan 2020 at 21:28

They are going to Wemberley!

Thanks Lynne. Scan done, consultation next Monday. A planning to back at work Tuesday.. seems a bit  quick to me!

User
Posted 10 Feb 2020 at 13:41

First consult post MRI and just short of three weeks after the procedure.

She is happy with the scan which shows the necrosis in the expected area. She took a wide margin apparently including a seminal vessel.

First PSA is booked in at the 3 month point in April.

No incontinence, no getting up to pee at night and he stopped Tamoulisin 3 days ago with no impact on flow so all good there.

Recovery of functionality has been quicker than after his 46 core biopsy or the FLA. However accepting use of a tablet means we are not comparing like with like yet. Not fully recovered without a tablet. 

Second week back at work he is reporting feeling more tired than normal so I am nagging him to keep his diary light at least! 

So next step April PSA with next MRI at the 6 month point.

 

User
Posted 10 Feb 2020 at 22:22
Looking good so far Clare,

I am interested that in your update and particularly when you said "She took a wide margin apparently including a seminal vessel .(vesicle?)." I had an appointment with her a few days after she did the HIFU on "A" and she said she might do further HIFU on my Prostate provided the cancer had not spread to my seminal vesicles. (I will be having an MRI to establish this). I will say nothing further about my own situation as I do not wish to digress other than to highlight what may be an inconsistency over HIFU being able to be used to extend to seminal vesicles.

Barry
User
Posted 10 Feb 2020 at 23:24

Interesting! She dictated the letter whilst we were there this morning so when I get it I will update. 

She did not say it had spread into the vesticle  ( she is consistently said the new tumour was contained) but that she had treated beyond the cancer. Maybe if it’s a confirmed spread it’s too late but whilst contained the vesicles tissue can be zapped? 

Her tech was playing up so we didn’t get to see the Post MRI and again whilst a very professional consultation compared with the time and detail we got from the Sperling centre it was much less detailed a talk through. 

i will read the letter with interest when it comes. Otherwise we got an appointment for an April PSA and consult and told another MRI will be taken at the 6 month point. No PIRAD score was given. We did ask but she said it was too soon after treatment to be graded.

She gave A a private prescription for viagra but told him he should be able to get it prescribed by the NHS via the GP due to the prostate cancer.

His recovery is much quicker than after the FLA which was on a much bigger tumour of course.

Fingers crossed you get sorted Barry

Regards

Clare

 

 

User
Posted 22 Feb 2020 at 20:19

One month on from A’s focal HIFU and I am pleased to report a full recovery. Tablets are no longer needed for sex and incontinence was never an issue.

His recovery has been much quicker than after his Focal Laser Ablation (FLA) however that was a much larger area treated than the January HIFU.

 No impact therefore on his quality of life re work, continence and erectile function. His orgasm has been dry since his FLA in 2017.

Next step PSA in April. We are completely optimistic that this will be good news so are getting on with life on that assumption.

Thanks all

Clare

 

 

User
Posted 22 Feb 2020 at 21:12
Great news Clare. Best wishes as ever. It seems you’ve taken a far less invasive course with equal results. I’m glad for you both x

If life gives you lemons , then make lemonade

User
Posted 22 Feb 2020 at 21:40

Thanks Chris,

We know we may end up with a more radical treatment but we prefer the ‘May’ and if that day comes feel happy that we have tried the alternatives first.

You continue to inspire Chris. Your pioneering on recovery and challenge to demand an individual  centred  approach is very much admired.

Keep enjoying life! 

User
Posted 30 May 2020 at 02:27

So a late PSA test with all the COVID 19 issues. Booked on Monday at local GP. 

It’s that time again to look at my seemingly perfectly healthy and active 57 Hubble and have to acknowledge that life may be about to go off the rails ..  again

 

 

 

User
Posted 30 May 2020 at 12:27

Hi Clare,

Good luck with your husband’s PSA test on Monday, I hope he has a good result.

Onwards and upwards, as we all keep saying.

Ange x

User
Posted 04 Jun 2020 at 18:27

Well our first experience with ringing GP for PSA results went like this:

’ I am not medically trained so pleased don’t ask me the number; all I am allowed to say is the result is ‘normal’.

Had to smile, we asked for a hard copy in the post! 

 

User
Posted 04 Jun 2020 at 18:44
Lol , I was very friendly (still am ) with a young guy on here who also had RP at the same time as me. Trying to talk to him about psa was like he had never been to school. He just didn’t get 0.2 or 0.02 etc.

In a way I guess she was right not to comment. Many people don’t understand the difference between either.

I am on the electronic patient system EMIS and can get all my blood results online.

Nice to hear from you Clare

If life gives you lemons , then make lemonade

User
Posted 05 Jun 2020 at 02:02

But seems you spoke with receptionist? Every time I ask for my PSA result from the receptionist I am told 'normal.' The receptionist has just gone by the values by age shown on the result. I then tell her that these are for somebody who has not had or is not being treated for Prostate Cancer. I request a printed copy to check the precise figure. Incidentally, on two or three occasions I have been told the information cannot be given to me until it it has been seen by my GP which means calling at the surgery again a day or two later.

Hope you can tell us the result was good Clare.

Edited by member 05 Jun 2020 at 02:04  | Reason: Not specified

Barry
User
Posted 05 Jun 2020 at 07:35

Originally Posted by: Online Community Member
Lol , I was very friendly (still am ) with a young guy on here who also had RP at the same time as me. Trying to talk to him about psa was like he had never been to school. He just didn’t get 0.2 or 0.02 etc.
In a way I guess she was right not to comment. Many people don’t understand the difference between < > either.
I am on the electronic patient system EMIS and can get all my blood results online.
Nice to hear from you Clare

When I'm counseling patients and asked to explain about test results, I get all sorts of things, 00.2, 0.00.2, ...

I get my test results from the surgery online system, although it's something I had to ask for specially - it wasn't available by default without them checking a box to say I could access my patient records. Surgery can't see hospital requests tests or vice versa, even though same lab, and sometimes same phial.

User
Posted 06 Jun 2020 at 00:54

Chris, I train accountants who struggle with basic maths these days!  Chris I Hope you are OK in these tricky times.

Barry now we have the print out it is 1.31. Lowest after the FLA was 1.32.

However no consult or reply to emails either ( normally A gets the test in the morning and we have lunch and see consultant who gives the result and the reassurance ( or not!)

So it’s down, he still has his prostate but I guess it’s just a ‘new baseline’ from which to watch the trend.

Hoping for a zoom consult as heard nothing and just organised this test locally when no reply!

So taking it as a positive but will want the next PSA test  ‘ on the nose’ in September. Three and half years since diagnosis. No symptoms  and other than recovery from treatments no impact on QOL but still recognise we want to know if another reoccurrence is happening. 

 

Barry did you decide whether to have any more treatment? Hope all is good with you.

Andy 62 thanks for the tip. The  GP were great so may stick with them for testing and just ask if they can set up  access to results on their online system like Chris and yourself.

1.31 .. taking it as positive ...  post FLA his PSA kept falling throughout 2017 and 2018, it was just 2019 that saw the increase and the new tumour.

Thanks all

Clare

 

User
Posted 06 Jun 2020 at 17:42
Hi Clare,

'A' still has most of his Prostate so as you say a base line to follow. As we have seen with others don't be surprised if there is a bit of up and down movement but hopefully not a sharp or steady increase.

My tumour is still only the size of a grain of rice and I was recommended to see what my PSA was in 6 months time and I have an appointment in September. I was happy to go along with this bearing in mind the pressure on hospitals (which has since eased somewhat) but also because I am not keen to travel on pubic transport for a procedure in London that can be delayed until there is less risk of getting the 'C' Virus. So I am on sort of AS.

Barry
User
Posted 07 Jun 2020 at 22:57

Thanks Barry, definitely seeing it as a new baseline and appreciate the advice re expecting fluctuations.

It sounds like you are doing the right thing with your ‘grain of rice’... keeping it under careful watch makes lots of sense even without the additional difficulties of Covid-19.

Great to catch up

 

Clare

User
Posted 16 Jun 2020 at 00:38

Consult happened over the phone. Due to delay in getting PSA test the 6 month MPMRI will here before we know it. A 6 month PSA also is planned once we have a scan date. 

Will stick with GP for the test to save the travel. 

She was happy with the PSA downward movement and said it’s not unusual for it to continue falling (as it did following the FLA).

The monitoring continues therefore! 

User
Posted 16 Jun 2020 at 07:56
I cannot work out WHY some Medical people are so secretive about test results. My GPs are inconsistent, sometimes it is all on my online record, other times "The Oncologist will tell you" Very odd.???

User
Posted 27 Jun 2020 at 20:32
Its crazy. By this time you are the expert, not just them! As a retired surgeon I would say there can be a spot of hubris.....
User
Posted 10 Jul 2020 at 22:11

Today saw A’s 6 month PSA test and MRI scan post focal HIFU. This appointment came in for a couple of weeks short of 6 months and with the COVID delay on the 3 month one it is the closest PSA’s test he has had.

So mask on he took the train to London and walked to the hospital for the blood test and MRI. Most wobbly I’ve known him after. He said the mask wearing whilst in MRI with contrast needle made him unusually claustrophobic. 

Home now and haven’t asked for results as we have consultation on Monday so may as well hear it all then. 

Just diarising as ever. Have a good weekend all.

 

User
Posted 10 Jul 2020 at 22:29

Good luck with results for Monday.

Angex

User
Posted 10 Jul 2020 at 22:46

Thank you Ange x

User
Posted 10 Jul 2020 at 23:29

Good luck for Monday.

Thankfully I dressed in shorts and tee for my MRI’s. Those magnets get warm apart from the circa 90’s techno tunez they emit  (is it just me?). I know what you mean about claustrophobia as it’s only something I developed later in life. Before my MRI I set up a mock MRI machine at home with same dimensions to get used to the confined space. Worked really well so I just focused on the sounds and closed my eyes. 

keep us posted!

User
Posted 12 Jul 2020 at 17:40

Thank you TG, great advice, he hasn’t anticipated the addition of a facemask during an MRI could have an impact. Also he said the contrast needle was just painful throughout which he hadn’t experienced before.

Nothing of course compared to so many so reporting rather than complaining. We should know tomorrow whether more treatment is recommended  or if the van is once again kicked down the road as a minimum positive outcome

 

he hasn’t mentioned the music! I must ask! My one and only MRI ( brain and full spine) I declined and offered sedation as I was convinced I had no claustrophobia and could live with my own head happily for some time! I actually pressed the panic button 3 times and had to be talked into keeping with it rather than losing what they captured .. not quite the person I thought I was! 

Clare

User
Posted 12 Jul 2020 at 18:22
Hi Clare I’ve had a zillion scans as you know. Sometimes offered music with MRI but mostly not. I only have CT and Bone scans now. The CT is a much larger scanner and not claustrophobic but somehow there is a real fear when the electric voice says breathe in and hold then breathe out , and you can see and hear the radiation elements whirring around inside. I hate it as each full body scan is equivalent to 7 yrs natural radiation. I’ve had at least 6 now .....

The new MRI scanners at Southampton are as big as the CT scanners. No Claustrophobia at all. I’m mega brave with injections and canulars etc , even injecting my own penis , but I have to say the contrast canula can be very painful. I think it’s because of your arm position. In my case both raised above my head. It hurts. Best of luck.

I have both full body CT and Bone again 27th July. I think my run of luck has run out judging by crippling fatigue this last few weeks :-(

If life gives you lemons , then make lemonade

User
Posted 12 Jul 2020 at 23:44

Hi Chris

Always good to have a catch up. You are indeed a scan guru and even though I don’t have a penis the thought of injecting it makes me wince! ( I was unable to prick my thumb back in the day when that was considered a normal part of a biology lesson at school in the 1970’s! 

It sounds like A has been lucky with his contrast cannula before and this one was more the norm! 

Sorry to hear about the fatigue :( :( 

Hot weather does not help with this I guess.  Hmmm..

Another scan does sound like a  very good idea despite all your history and I know you have a top consultant who also seems to see you as an individual not just a number.. 

Thoughts with you, the build up to scans and consults are just rubbish times I know  :( 

On the positive side fab that Southampton have such top scanners as well as your consultant. Also such a fantastic part of the world. We are hoping to do a trip to the New Forest in August as it’s a real favourite. 

Let us know how 27th goes Chris.

xx

 

User
Posted 12 Jul 2020 at 23:53
Funny isn't it, how we all respond to things differently. I have a brain scan every 2 or 3 years and have never given it a thought until now. On the other hand, I had to wear a mask yesterday for the first time and found it to be the most horrific hour imaginable :-(

Fingers crossed for good news tomorrow for you, Clare.

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

User
Posted 13 Jul 2020 at 13:52

Thanks Lynne

i had to wear a mask at the hairdresser and agree it was vile ( hats off to the medics working in full PPE)

i shouldn’t ask about your brain but mine is a left temporal shunt fitted when I was 35 following rupturing an arachnoid cyst i didn’t know I had on a  flight to New York.

only the one MRI for me in the USA .. monitored via CAT scans.

 Couldn’t but be interested in your comment! 

Back to PCa ., 5pm zoom consult. I am not being particularly effective today! 

User
Posted 14 Jul 2020 at 09:51

So to quote another member ‘ that was not the plan’

Not good news yesterday. PSA back at 1.6 and MRI showing something suspicious at the Apex

Not what we expected to hear. GP was great getting urine form and pit sorted immediately. A has just dropped a sample back but neither of us holding out hope for an infection. 

Third biopsy booked on 31st July which means A going into self isolation from Friday. As he can WFH that’s not the end of the world. 

We are both a bit down this morning tbh ( knowing we have lots of blessings to count but still)

Absolutely reporting as is. Clearly know all choices made have been our own.

 

Clare

User
Posted 14 Jul 2020 at 11:53

So sorry to hear your news Clare. Fingers crossed for A’s biopsy results.

Take care both,

Angexx

User
Posted 14 Jul 2020 at 12:42
Sorry about knock backs Clare. If urine tests should prove negative were you told that further PSA tests would be done and depending on results whether biopsy of suspicious area undertaken and possibly be radiated or whether Prostate could be removed? I would like to know and prepare for my options in this situation. Do you know that the HIFU worked on the area where it was directed? Was that suspicious area seen in MRI prior to the HIFU? Sometimes, what are considered insignificant tumours are left and just monitored to check whether these become significant. Clearly, 'A' can't keep on repeatedly having focal therapy every time a further possible tumour is identified. In your situation, before long I would want a full appraisal of the situation and what options there are.
Barry
User
Posted 15 Jul 2020 at 23:52

Thanks Barry

the suspicious area is in the area he had the HIFU. It is close to the Apex and she was non commital re next steps other than:

1. Get an immediate urine test ( done - hope to get results tomorrow but not expecting that to be the issue

2. Got added to 31st July biopsy list ( he has to start to self isolate from Friday as hospital is COVID free. 

She wants biopsy results before discussing next step but we are accepting the likelihood that an RP will be recommended and if so will accept it - we have met the surgeon experienced in removal following a focal treatment and he uses Neuro- safe so hopefully nerves can be saved in full confidence.

we have known for 2.5 years that this maybe where we end up and heigh- ho. It’s a very quick increase from 1.31- 1.6 . A still is 100% symptoms free. He was in office for first time today which he enjoyed. He is 57, fit and healthy and it seems weird to think we have to injure him to keep him safe.. 

So if urine test is negative my understanding is no further PSA but direct to biopsy. Do you think we should ask for a confirmatory PSA? 

Thanks Barry

 

Clare

User
Posted 15 Jul 2020 at 23:59

Originally Posted by: Online Community Member

So sorry to hear your news Clare. Fingers crossed for A’s biopsy results.

Take care both,

Angexx

Thank you Ange. We are coming round to the likelihood his PCa is not quite the pussycat type we thought on first diagnosis! 

x

User
Posted 16 Jul 2020 at 02:51
Clare,

It seems to me that CM feels it is highly likely that the suspicious area is cancerous and I don't think 'A's PSA moving up or down slightly before the biopsy would make any difference. However, should the urine test prove to be positive, it would seem prudent to treat this and then have a PSA test. The biopsy could be deferred until this was done and it could be established whether the infection was responsible for the rise.

However, I would try to get confirmation, (as well as can be ascertained from biopsy following on from the MRI), whether the cancer is still well contained so a RP stands a good chance it would remove it all.

For some, focal treatment does the job or for longer than it worked for 'A' and it has been given a good chance but I understand there is a limit to the number of times a man is prepared to get tumours treated piecemeal.

Barry
User
Posted 16 Jul 2020 at 12:43

Sorry to hear you are going through this again. Hope you get a timely action plan. I highly recommend the Prof Whocannotbenamedonhere if you go down the RARP route. Still no regrets on that route and exceeded expectations on outcome. 

Keep us posted!

Simon 

User
Posted 16 Jul 2020 at 20:58

Thanks Simon

The prof you mentioned and the alternative approach is on my list of research topics! A has had 2 focal treatments and the guy who specialises in removing ‘focal fails’ does have great stats.

Barry - good point we need to know if it’s still contained. It was us who pushed for the earliest biopsy date due to a break planned early August so she didn’t seem concerned if we had waited till September. I think this question is worth an email to her and also we haven’t had the MRI report. 

So today ( both WFH)  we walked to our local for our first post full lockdown lunch. Beautiful weather, lovely lunch. Walking back past the GP reminded us we needed to ring for results and did so as we walked back. As expected the urine test has come back negative so self isolation begins tomorrow heading for the third biopsy. He rang each of our children after we heard no infection. We are very lucky to have a fantastic ‘pigeon pair’ and blessings are very much being counted! 

Clare

User
Posted 16 Jul 2020 at 22:07
Sorry to see this Claret; on the up side you have managed to delay the side effects of radical treatment for 21/2 years and trodden a path that may help newly diagnosed men in the future.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
Forum Jump  
12>
©2021 Prostate Cancer UK