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Surprise honesty from surgeon

User
Posted 06 October 2015 19:46:31(UTC)
See could prevupious biopsy missed ..... For previous info
Well I didn't expect to be writing this today. After meeting with the surgeon, we declined the biopsies. He informed us that the MRI was inconclusive, the radiologist reported that it was prostatis and the surgeon admitted small area of concern would be difficult to target successfully and it could be missed. He said the hospital did not have the most up to date equipment and suggested we pay/use our health insurance to help pay for a better quality MRI - FUSION which would give more accurate results and then the biopsy done by the same hospital as the MRI would be only and precisely in the lesion/are of concern.
He apologise for not speaking to us in outpatients and recommending biopsy but due to the fact that previous biopsy was done by a different hospital /region and he didn't have the paperwork, he did not know if the area had previously been sampled. H says erratic PSA is probably caused by prostatis.
So, we will persue alternative MRI and GP will treat prostatis and we will take alternative therapy to reduce inflammation too.
I will post what happens should anyone be interested
User
Posted 06 October 2015 22:27:15(UTC)

Originally Posted by: Online Community Member
.
I will post what happens should anyone be interested

We are all interested, and we are all here to offer support.  sounds like you have had a good result?

atb

dave

 

 

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
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User
Posted 07 October 2015 07:15:03(UTC)

Sounds like that could be good news Susan99.

Let's hope so anyway.
Good luck to your other half with the prostatitis treatment

We can't control the winds - but we can adjust our sails
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User
Posted 07 October 2015 07:27:21(UTC)

Your tone seems brighter, good.

The forum revamp doesn't now include the number reading each thread. So although replies might seem low the actual number of those reading could well be far higher. So please update as all experiences are valuable.

Good luck

Ray

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User
Posted 06 October 2015 22:27:15(UTC)

Originally Posted by: Online Community Member
.
I will post what happens should anyone be interested

We are all interested, and we are all here to offer support.  sounds like you have had a good result?

atb

dave

 

 

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
Thanked 1 time
User
Posted 07 October 2015 07:15:03(UTC)

Sounds like that could be good news Susan99.

Let's hope so anyway.
Good luck to your other half with the prostatitis treatment

We can't control the winds - but we can adjust our sails
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User
Posted 07 October 2015 07:27:21(UTC)

Your tone seems brighter, good.

The forum revamp doesn't now include the number reading each thread. So although replies might seem low the actual number of those reading could well be far higher. So please update as all experiences are valuable.

Good luck

Ray

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User
Posted 15 October 2015 15:21:00(UTC)
Thank you all for your messages. Husbands Prostatitis improved to no discomfort with anti inflamatories -low dose of ibuprofen and natural remedies - our daughter is trained in homeopathy so no choice on that one 😊 will stop ibuprofen over the weekend to see if symptoms return and natural remedies are working. Gp on consultants advice may prescribe long term anti-biotics but we have to wait until he gets PSA results from Tuesday due tmrw at GP appointment. We have arranged the recommended MRI and see the consultant 4th November. 5 1/2 hr 300 mile journey Not available on the NHS as apparently this is the only location in the country that can perform it.

Onwards we go - good health to you all
User
Posted 15 October 2015 15:34:31(UTC)

Glad the other half's symptoms have improved.

Good luck for the 4th November and with that pretty awful journey too.

We can't control the winds - but we can adjust our sails
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User
Posted 15 October 2015 21:04:53(UTC)
Hi Susan,thanks for your post,wanted to send you a private reply but as I'm a new member seems I can't yet. We went for results of biopsy yesterday.on one side of prostate 8 out of 12 cores had low grade cancer,the other only one core had cancer but that was of moderate grade which means his Gleason has gone up from 6 to 7. My husband has only just recovered from the effect of the biopsy,retention,catheter etc consultant suggesting now that he should have treatment as the number of cores and grade increased,of course these could have been missed by previous trans rectal biopsy. Has to now have a bone scan,if that ok we are thinking surgery might be best option as he has had lot of urinary problems and it seems radiotherapy could make these much worse! Know surgery has its problems as all the treatments do,so difficult. We coping ok,think my husband is slowly accepting the fact that he will need treatment. Hope you both get on ok with Mir,it can be stressful but I know we have to try to take one step at a time. Thanks for your encouragement.
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User
Posted 16 October 2015 08:57:29(UTC)
Tuesday's PSA result - 7.6. Yes it's still high but dropping and other than natural remedies and eating even more healthily than usual - even more fresh stuff, less red meat and no processed foods (well, there was one delicious bacon baguette!!) and I always Home make all of our meals from scratch. The turmeric supplement and 2 x 2000mg ibuprofen a day is all we have done. Hopeful , as we always are but even more so, that the MRI fusion scan will lead us to not needing the biopsies but at least if that is the course, we have the best man we can find doing the procedure.

Love, health and positive vibes to you all 😌. Today is a beautiful day,
User
Posted 16 October 2015 12:33:51(UTC)

Hi Susan99,

Good news that your husband's PSA has fallen.

Hope things go well on November 4th.  It's a shame you have to make such a long journey to get the scan.  I hope the results are good for your husband. 

Keep posting.  Many of us read them all but don't always reply. 

Take care.

Steve

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User
Posted 22 October 2015 19:03:22(UTC)
Thanks Steve,
We have another PSA lined up for next week in the hope that it keeps falling now he is on antibiotics and the Prostatitis diagnosis is the cause. We have MRI booked now also for 4th - private but at Addenbrooks hospital, (if we lived in their post code we could have the whole procedure done on NHS including the better biopsies)!!
We will have the MRI results 2 days later - amazing what a private consultation gets you :-)
It is a long journey, and expense but what price do you put on the health of the man you love 😍money in the bank is of no use without him in good health and our planned for long future - if only to wind up our children for more years- ha ha
It's just a shame that poor diagnostic -(tesla 1.5 is the standard and we are paying for tesla3 MRI ) could have lead to unnecessary biopsies or worsening of his condition results in us having to go this route and we are thankful that we are in a position financially to pay this small price for peace of mind and a good outcome.
Our hospital will have the tesla 3 next spring - paid for by charity and friends of hospital fundraising but they do not comment on the fusion system that would allow for the biopsies to be more accurately performed.

How exciting for you with one walking grandchild and one due!! Ours live abroad and we see them far less than we would like but Skype now the eldest one realises if he cant see us, we can't see him.
Susan
"every day is a beautiful day" πŸ‘ - I think I must stop using the thumbs up, our daughter says it just makes her cringe as it reminds her of her dad describing his DRE..... 😳😁
User
Posted 06 November 2015 10:15:21(UTC)
Where we are now.... Psa 7.6 and 2 weeks later at request of Cambridge consultant checked again and was 7.8 half way through month of antibiotics and the lowere reading was before he started on the, but was taking anti inflamatory meds which he stopped prior to the 7.8 result.
MRI done, alone with flow test, bloods etc and also pre op assessment should he need biopsies which is scheduled for 23rd - MRI results and yet another psa result on Thursday as consultant wants to look at both before discussing things. His recommendation is to have biopsies regardless of MRI unless it is totally conclusive that there is no concern. Says after 5 years of erratic results he believes it's damaging quality of life with it hanging over us and upper level of 8 with a volume of 48 (current, no idea what it was 5 years ago!) is in his opinion too high and it should be 5.5 max. We want certainty but not at any cost to his wellbeing and the Prostatitis could still be further aggravated by 30 biopsy samples. So we wait for the MRI results to give us further info to make what we hope is the correct decision.
Consultant says, in his opinion as he has no other symptoms, if it is cancer it would be very low grade and treatment may not be necessary at this point and we must leave the cancer in his office and go away to carry on with our lives. Have regular psa but don't really take any notice of them as they are unreliable on their own and consider a further MRI in a year. Lets hope he is right on one of his choices!!!
Will post after we speak to him next week.
User
Posted 06 November 2015 11:51:51(UTC)

Pleased to read you're moving forward. It's most unlikely you will ever get 100% certainty in the PCa world. As cancer of the mind is very difficult to treat let alone cure the biopsy might be worth considering as then you will have a better idea of where you're at. PSA level is not a good predictor of aggressiveness neither are symptoms until perhaps it's too late for a radical cure. There are those of us diagnosed with a PSA under 10 with at least a Gleason 4 in one the 2 numbers with at most just bladder frequency issues.

Good luck on whatever direction you chose to travel

Ray

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User
Posted 06 November 2015 15:24:17(UTC)

The PSA of a friend of mine fluctuates between the sevens and eights and has been like this for several years now. He has been diagnosed with PIN which may or may not become a Gleason gradable cancer, so meanwhile he has put the possibility of progression to the back of his mind.

The template biopsy associated with a transperineal one not only covers the prostate more thoroughly but because access to the prrostate for the cores is not through the rectum, as is the case with the truss biopsy, the incidence of infection is much lower. It is however more involved and recovery takes rather longer.

Barry
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User
Posted 06 November 2015 16:58:14(UTC)
Thank you both😌 the recovery from the transperineal biopsy does appear to be a rocky road but as you say, more conclusive in the long run. Its hard to get it out of your head once you have a suspicion and we seem to be drifting towards the biopsies at the moment. Unless the consultant categorically states he has no concerns I think the decision is to proceed. We are concerned about the Prostatitis being aggravated by the biopsy as it appears to have settled down at the moment
User
Posted 07 November 2015 16:35:48(UTC)

I had a transperineal biopsy in September and although I dreaded having it it was relatively straightforward. Day surgery, general anaesthetic, released mid afternoon. Slightly tired for a couple of days, lots of bruising down below which lasted a couple of weeks, some tendency to retention but never came anywhere near acute, very little pain. It does as you say give them far more information so you should have it if they suggest it. But talking to my GP yesterday (a locum at our surgery) he had one and had to spend two weeks in hospital with acute infection so it doesn't always go to plan.

First post, not completed my profile yet. PSA 6, Gleeson 7 (4+3), localised with bone scan clear, currently on Prostap with RT due January/February. All looking good at the moment - and interesting reading all the posts here.

Dave

 

User
Posted 07 November 2015 23:27:32(UTC)
Thanks Dave,
It does seems to vary but we are hoping as it will be with a State of the Art piece of equipment - and state of the art bill to go with it 😳he should have a good chance of avoiding most of the problems that we read about and he will have been on antibiotics for 6 weeks by the time the biopsies are done.
Glad you are doing ok and yes this forum gives lots of support and helps with knowing what to expect and importantly the wealth of knowledge helps ask the right questions too.

User
Posted 08 November 2015 08:43:41(UTC)

Just to say welcome Dave, now you've braved your first post!

We can't control the winds - but we can adjust our sails
User
Posted 08 November 2015 08:44:56(UTC)

Hi Susan
My perineal biopsy which took 25 samples was a walk in the park. In and out of hospital in a day with virtually zero pain. No blood in urine with any of my biopsies but semen very unpleasant for upto 8 weeks , so condoms essential. It still failed to detect my nasty cancer high at the back though , so valuable time was wasted with treatment.
Very best to you
Chris




If life gives you lemons , then make lemonade
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User
Posted 13 November 2015 21:02:01(UTC)
Where we are at...And decisions we have to make. ... Psa in the last 5 weeks has been 7.6. -.8. And last week 8 so after falling from 10.7 it's on the rise. September MRI prostate was 48 last weeks it was 33 Consltant says MRI shows lesion 6mmx4mm in the apex which doest not identify as either benign or malignant and assumption on their part is 60-70% risk of cancer (which is unlikely to be aggressive ) and although everything points to Prostatitis - reduction in size and pelvic pain etc having gone, the only way to conclusively know is to proceed with the biopsies. We have cancelled the 23 znov date and will have them done early January unless the NHS consltant on Monday has a completely different view!! He originally said to have them done but no hurry - we hope with the new info we have, he concurs with that decision. Mixed feelings on knowing now not in 2 months by which time it would be possible that treatment if needed, was over or well under way as opposed to having time to assess decision, we have just started to buy a house that's designed for us and is only 6 inches out of the ground son,ots going on and we need to have our attention focused on that ,some ave it sorted -should we have a long road of treatment and PC ahead of us.
Opinions please guys and girls - would be appreciated πŸ˜”you have FAR MORE experience than us
User
Posted 20 January 2016 16:43:53(UTC)
Transperrineal biopsies taken 18 th Jan. He says more uncomfortable afterwards than transrectal ones but that's not surprising and nothing a few painkillers hasn't sorted out. Results are scheduled for 2-3 weeks from private consultant and return to NHS one on 8th Feb. He (NHS)advised us that if it is cancer, then he recommends radical prostatectomy which horrified OH so at the moment we are just waiting for results knowing the options and hoping we still get the all clear πŸ€” But have concerns as to what the lesion is if biopsy negative.
Will post more when we know.
User
Posted 20 January 2016 16:51:10(UTC)

Hi Susan
Many best wishes and fingers crossed for the results. I had this biopsy too and pain very soon passes. Just make sure you have read the toolkit again or spoken to the specialist nurses , so that you understand all the options when they are given.
Good luck
Chris




If life gives you lemons , then make lemonade
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User
Posted 20 January 2016 19:59:58(UTC)

Originally Posted by: Online Community Member
He (NHS)advised us that if it is cancer, then he recommends radical prostatectomy which horrified OH so at the moment we are just waiting for results knowing the options and hoping we still get the all clear πŸ€”
.

Does that surgeon offer any other treatment?  

I have never heard of a surgeon or oncologist or Brachy person recommending any treatment above another, only offering their own specialism. 

Is such a recommendation wise or ethical?  They will not be the one living with the consequences of the treatment.

My GP only told me after I had had my Robotic op that that is what he would have chosen had he been in my position, and what his father had chosen before.  The first surgeon who could only offer open surgery, and therefore did, also told me after my op that if he could have offered robotic surgery, he would have  preferred to offer me that over open surgery.

I know there are some who would like the choice taken out of their hands and be "guided" or "directed" to a treatment, others who scoff at the seemingly over valued advantages of robotic v open surgery.  

Susan, if I were your OH and you, I would make sure that you and OH (we) considered all the options that are open and may be suitable for your OH, some of which may not be offered by your NHS trust?  I had to ask for a referral to a neighbouring trust for my Da Vinci, and the surgeon who could only offer open surgery attended my Da Vinci procedure on his day off to witness me going under the robotic arm or knife. 

Research widely, not too widely, it just confuses things, choose wisely for your character and mindset.

atb

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
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User
Posted 20 January 2016 22:26:47(UTC)

Susan, Dave's advice might be relevant if your other half had been diagnosed and then offered only surgery. In the circumstances, it might be seen as jumping the gun to worry about what you are not being offered before you know whether anything is needed. If the result of the biopsy is positive for cancer then there may be more scans etc and then hopefully a multi-disciplinary team will review the results before you are advised which options are available. If at that point, you are only offered surgery, it would be worth asking which types of surgery are being offered and why other options such as brachy and radiotherapy are not considered viable.

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


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User
Posted 21 January 2016 21:18:48(UTC)

Thanks all. NHS consultant said that his verdict as its the only way to ensure cancer is removed totally, but choice is ours, It would be robotic as we are lucky to have a great charity(we now advocate and do prostate cancer awareness for them) who have raised the funds for the equipment and at the end of this month have raise enough money for a tesla3 MRI and the transfusion biopsy technology we have just paid 3.5k for it will be up and running in a few months as NHS have to commission it's use etc.
Private consultant says, he would advise least invasive/best outcome for someone of his age with an expectancy of many years happy life with least consequences but our choice. We've looked at all options so we have questions at the ready- if they are needed.

JUST HAD PHONE CALL FROM CONSULTANTS SECRETARY TO SAY BE HOME 5.30 MONDAY AS HE WILL RING WITH RESULTS.
Less time to fret 😊Will post again after Monday

User
Posted 25 January 2016 22:47:29(UTC)
Cancer confirmed. Gleason 6 3+3. 6 out of 26 cancer cores. All in one location - surgeon suggests at moment active surveillance 3 monthly psa, MRI in 6 months and then review it. Knee jerk reactions would not be best quality of lifeQuite possible he's had it 5 years as would have been missed by trans rectal biopsy. Cancer is probably causing prostatitis as its aggravating it and obviously responsible for fluctuating psa. See NHS consultant on 8 Feb. Not sure how we feel as we have been prepared for this but it's still a kick in the teeth to have the diagnosis and know that we now face decisions !!


User
Posted 25 January 2016 22:59:43(UTC)

Not such good news then Susan, but then not the worst it could have been and at least now you have a starting point.

I'm sure the others will offer their advice as soon as they see your post.

We can't control the winds - but we can adjust our sails
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User
Posted 25 January 2016 23:21:47(UTC)

I think in the circumstances this is perhaps better news than you might have had and the breathing space of a few months AS will give you a good sense of what living with PCa might be like - a test of how resilient you both are, how draining it may or may not be to live with the uncertainty, etc. Of course, even if he went for radical treatment you will be living with uncertainty for the rest of his life but some people find AS to be manageable for the short or even medium term.

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


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User
Posted 26 January 2016 09:42:53(UTC)
Thank you Lyn,
We feel we are resilient and breathing space is what we need. Obviously, we hoped all clear but in our heads we suspected that the previous biopsies 5 years ago missed what has now been found. For now, we will get on with living our lives and follow AS with a mind that if things change, then we too must change our thoughts. At the moment, best quality of life for as long as possible is our choice but if it threatens his life, and surgery is the option..... Let's worry when we have to and meantime we have thrown ourselves into supporting our local prostate cancer charity and are set to raise awareness locally and have local MP willing to raise screening and better testing in parliament.

"Every day is a beautiful day" 😊
User
Posted 26 January 2016 10:34:49(UTC)

Hi Susan
I was going to post last night and decided not to in the end. Mainly because my view conflicts with a few others obviously , but having gone through all I have been through in the last 18 months I am a firm believer in NOT having further treatment if your consultant actually encourages this. Others insist on the " get it out now " approach . Ultimately it is your own life view and choice. Any of the treatments ultimately change your life one way or another and possibly forever , and in my opinion the longer you can put it off safely the better . My issue stupidly was not listening properly to my consultant which has ended up leaving me in an unfavourable position .
All the best to you both
Chris




If life gives you lemons , then make lemonade
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User
Posted 26 January 2016 10:47:47(UTC)

Hi Susan,

At what appears to be T1 staging and G6 it would make sense to me to opt for Active Surveillance for the time being  as has been recommended by your consultant.

Hubby may well be one of the lucky ones and not need radical treatment for years to come , if indeed at all.

Best wishes to you both.

Luther


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User
Posted 28 January 2016 19:16:36(UTC)
Thank you Luther,
We hope to be one of the lucky ones! We now have the complete histology report which shows from 24 cores, there is cancer in two cores, high grade pin in 4 all within a very small area. It does mention perineal invasion in one which is a concern as I've read that some research suggests this is more likely to allow cancer to spread and may be a route out of the prostate. ( Anyone have any knowledge on this, I would be interested to hear your opinions)
For now we are just breathing a sigh that it's not worse news and we have time to arm ourselves with info should we have to make decisions In The future. I think the NHS consultant may have a different view to the private one so I will post his comments after we see him on 8th Feb

Best wishes!
Susan

Every day is a beautiful day 😊
User
Posted 08 February 2016 19:15:22(UTC)

Well it seems a long journey so far. We now have decided to take their guidance as it fits in with how we feel. Consultant agrees with Cambridge. Active Surveillance is best course at the moment. Says don't do psa test in 3 months leave it 6 months as what action would you take anyway if it's slightly up, and that could be due to the recent biopsies. It would only serve to worry you. Agrees MRI in 6 months would be sensible but cancer unlikely to have progressed by then as it is VERY SMALL and non aggressive. MRI would show if it has grown not if it is more aggressive in type but they hope by the time he has MRI they will have the technology to do guided biopsy of only the lesion area 6-8 biopsies under local anaesthetic not 26 under general as the recent Cambridge ones. Have appointment with him for 4 months time to arrange MRI for Aug-Sept. Surprised to find out that if brachytherapy is our route, then if cancer returns it makes RP more complicated, we thought that only applied to RT but we will question it again when we next see them.
Thank you all for your interest and support. We are off on holiday in a few weeks, just have the house purchase to finalise....

User
Posted 08 February 2016 19:49:57(UTC)

Hi Susan
You have my total support on this for what my view is worth !! If it's kept an eye on then that's good , and look how many people have the op , then need HT and RT etc anyway. It's life changing having treatment and you STILL worry just as much afterwards. But that's just me and I'm not a role-model haha.
I think any radiation however it is applied affects the prostate so badly it makes RP very difficult afterwards. HDR bracchy is basically radiation planted in the prostate whereas EBRT is radiation applied from outside. So same thing really but I think Bracchy safer as it doesn't zap healthy tissue at the same time , or less anyway.
Holiday !!!! Do you need a guide ?
Chris




If life gives you lemons , then make lemonade
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User
Posted 08 February 2016 20:20:19(UTC)

Hello Susan
Well at least both consultants agreed so that was reassuring.
We took the AS route for a year which did give us breathing space.

Good luck with the house purchase. Now go off and enjoy that much needed break away and put the cancer problems on hold for now.

All the best

We can't control the winds - but we can adjust our sails
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User
Posted 09 February 2016 00:17:18(UTC)

Hi Susan,
Agree with Chris, Brachy is becoming preferred option for RT where suitable for reason given. However, whether the high dose or seeds are used, external beam can be given where warranted to provide wider cover if required.

Have a great holiday.

Barry
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