Xander's Story

Xander's Story

User

Posted 12 Nov 2017 at 17:13

Hi All

I have just been diagnosed with 3+3 (Gleason 6) via TRUS biopsy. 3 out of 12 cores came back with well diffrentiated adenocarcinoma. Not sure what that means ?

They were all from one side. It was 10% in each of those 3 cores. MRI showed that there was lesion in the LEFT periphery 1.3cm and another that is apparently 0.9cm right lateral base. (Not sure where that is - can anyone help ?) I am not sure whether the second one was pierced or not. I think my staging is t1/t2.

All my DREs were non-conclusive (aka seemingly healthy). Though suprisingly during my TRUS biopsy they suddenly seemed to have done a DRE which is now being stated as firm. My prostate apparently is rather small 23 gms.

From 2015 my PSA seemed to have risen from around 1.87 but I did not get tested because my GPs claimed that the getting up in the night to go to the toilet was an overactive bladder!! However in Sep 2017 I had 2 readings that were marginially high 3.4, 3.5 and then one which was 4.05 and the very next day 3.55

I was suffering from median lobe enlargement (only detected this year because I went for an ultrasound in India ) and had been going to the toilet in the night to urinate for the last 4 years. MRI claims that this transition/median lobe has a bit of BPH.

My father did die of cancer that had spread but he was a smoker who had stopped late in his life, they think it originated from his kidneys. He did have a TURP on his prostate 9 years before passing away and no cancer was mentioned then. (Not sure whether he had been biopsied for it during his Turp op - which I am sure they would have done but cant be sure).

No close relatives of mine have this problem. But, 2 of my dad's cousins both brothers have prostate cancer.One has had a radical prostatecomy and the other radiation. 59 and 71 years old. I am 55.

I have been given the option of radical prostatectomy or active surveillance.

User

Posted 28 Nov 2017 at 19:11

Most oncologists would say that no-one can be considered to be in remission until they have had 5 years clear after radical cancer treatment - the same applies to men that have had RP, women having breast cancer treatment, brain tumour treatments, etc. NICE guidance is that 10 years without recurrence is the official point for declaring someone is 'in remission' - my dad actually got a letter telling him the good news exactly 10 years after his RP (it came back 3 years later)

In the case of RT, there are a number of things to consider. While-ever you are on HT your PSA is held falsely low so time is needed after you stop taking the hormones to see what level you bounce back to and thus assess what your 'normal' is (because it can take a while for the effects of the HT to wear off and for your body to start producing testosterone again). Take a look at Ray's profile - his PSA bobs up and down like a yo-yo. Then you have to take account that the RT goes on working for up to 18 months after it finished - if not on HT at that point, you would expect your lowest PSA score to be at around 18 - 24 months post op. So the first couple of years are a bit unreliable as far as PSA testing goes, and years 3 / 4 provide a baseline. If you stay on or around 2 for 5 years after you stop the HT that is a good sign.

Interestingly, new research has shown that if women have HT for 5 years post radical treatment for breast cancer and then stop, their risk of the cancer coming back is just as high as if they hadn't taken the hormones at all - advice now is that the woman should stick with HT for at least 10 years or permanently. I wonder how long it will be before research is commissioned and similar conclusions are drawn for prostate cancer?

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

User

Posted 28 Dec 2017 at 17:59

Xander

Great news, another step completed.

I always carried a towel,spare underwear, trousers and a boots urine bottle in the car in case of emergencies. I only had to use them once or twice. If you have an android phone or tablet get the free app "prostate aerobics", it has reminders, instructions and a coaching mode. The apple version was a couple of quid. With practice you can isolate the right muscles to exercise.

Keep active but no marathons just yet.

Best wishes for a speedy recovery.

Thanks Chris

User

Posted 29 Nov 2017 at 23:55

I don't know if this is helpful or too direct or even misguided. I was the opposite to you. I wasn't mentally strong with the tumour inside me. To me every moment with the tumour was a moment that could be the beginning of too late. The operation was 3 hours asleep and then wake up without a prostate. I never had any pain although there was some discomfort.

I also didn't want to know too many details, the surgeon will do what he needs to do. The outcome will be what it is, my knowledge will make no difference to the op. Although I did say I'd rather he was sure it was all gone than to risk leaving something.

There are thousands of prostate operations every year and the best thing is to be focussed on what you want and get it done as soon as possible.

Good luck

User

Posted 23 Dec 2017 at 16:22

I am glad you have had your surgery now and are on the mend.

It sounds like you have had a hard time in recovery at the hospital. I also had a problem with a night shift nurse who was very reluctant to do anything. Fortunately the charge nurse stepped in and helped me. Like your hospital I cannot praise the rest of the staff highly enough.

Otherwise all was ok and I was out after the second night in hospital and on my way home with recovery pretty much to plan.

Here's hoping your recovery continues to plan and you get the catheter out in the next week or so.

Thanks for posting, an interesting read, well put.

Next phase in your recovery is catheter removal.

Best wishes, Ian

Ido4

User

Posted 24 Dec 2017 at 20:11

Xander

I don't like using the word "normal" but it is a common occurrence. It is often called by passing and can be quite painful at times. The tinge of blood could be the urine washing past the scab/congealed blood in the urethra. Clear urine is a very good sign and I personally would not be worried. Easier said than done with the Xmas holidays, but if in doubt get medical advice.

I have had urethral Catheters fitted about 10 times in the last four years and had by passing almost every time.

I was always told rose colour in the bag is okay red colour is time to get advice.

Thanks Chris

User

Posted 28 Dec 2017 at 18:33

Xander, Thanks for the link to Dr McHugh's website above. Interesting to read about a Urologist's own PCa diagnosis and treatment. Enjoyed his blog, and wished I'd seen his worksheet on choosing RT or RP G

Edited by member 28 Dec 2017 at 18:37 | Reason: Not specified

User

Posted 04 Jan 2018 at 14:58

Yes, many men find they still get some issue from the Cowper's Gland - it is normal and not to be concerned about.

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

User

Posted 04 Jan 2018 at 15:55

I’ve had more issue from the Cowper’s gland than ever before tbh. Not sure why , but rest assured it’s quite normal

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User

Posted 12 Nov 2017 at 21:58

Hi,

The left lesion seems a low grade and the psa isn't very high, in fact surprisingly low I'd think. The 13mm lesion isn't that large but it's not small. Although with a smallish prostate it might seem relatively larger than many.

The right lesion 9mm is an unknown as the biopsy missed it. Did they suggest another biopsy is needed to find its grade? On the other hand an operation will remove them both. That the lesion is on the base of the prostate may lead to you thinking it is better removed, although without knowing its grade you can't be sure.

If it was ne I'd ask about the non biopsied lesion and whether because it is on the base and likely near the bladder it needs checking or if they suggest it should be removed. I think I'd be favouring an early op but might be thinking could I risk waiting to see how it goes. Knowing more about the second lesion might influence decisions.

Hopefully someone else will add to this, I'm not qualified to advise. Although we're all patients or close relatives who've read a bit and not medical practitioners.

Regards

Peter

User

Posted 12 Nov 2017 at 23:27

The fact that they have offered active surveillance needs a bit more explanation - could you phone your nurse specialist (if you were allocated one) to ask about the lesion on the right hand side? It may be that you had high definition scans and the doctors are confident that the RH grey area is benign?

Also, has it been explained to you where the two choices (surgery or AS) came from? Did a multi-disciplinary team look at your results and make a recommendation or was it just the surgeon? If just the surgeon, you could ask now for a referral to an oncologist to discuss alternatives such as external beam radiotherapy, brachytherapy, etc.

PS non-conclusive (inconclusive) doesn't normally suggest 'healthy' or 'normal'; that would have been described as 'normal' and/or 'soft'. Non-conclusive suggests that your prostate did not feel soft but nor could they feel tumours breaching the gland so the result is 'we can't say it is cancer but neither can we say it is fine'

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

User

Posted 13 Nov 2017 at 06:57

Three words ,
Sack your GP

User

Posted 13 Nov 2017 at 07:26

Hi there,

I would also want to ask why they did an MRI and then a non targeted biopsy?

I would want to be 100% certain any identified lesions were biopsied before making a decision plus as Lynn said why is AS offered but not RT?

My husband was diagnosed with Gleason 6 (3+3). Diagostic process was MpMRI scan which identified the lesions so the urologist could target using a template biopsy.

Lots of uncertainty would make me want a new GP and a second opinion on diagnosis route!

Good luck

User

Posted 13 Nov 2017 at 18:32

The grey area at right lateral base is right at the top of the prostate where it meets the bladder - very difficult to biopsy. My reading of it was that the scan had been done in India and the biopsy was done when Zander got back to the UK?

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

User

Posted 14 Nov 2017 at 14:26

Thank You All for your replies - much appreciated.

I did ask my consultant who gave me my diagnosis - he was the guy who actually did my biopsy - and I am sure I asked him "did you pierce it" and he said that he had biopsied that area and found nothing.

But, being a TRUS biopsy he could have missed it.

Okay so "base" here means at the top and "lateral" means towards the side. So, maybe just maybe it is not touching the bladder.

He also said that they had reviewed my biopsy samples twice and had discussed my case in joint meetings.

When I spoke to the surgeon - he said because of my age - he would not recommend radiation because of it's associated risks of generating malignancy itself.

I have been told that irradiating the prostate later makes it "rubbery" and difficult to remove later on.

My appointment with the uro-oncologist is so far away nearly at the end of 30th November.

User

Posted 14 Nov 2017 at 21:15

It looks like there is a danger of them delaying my op because I am a possible Active Surveillance Candidate.

All ops are only in St. Georges - Croydon University does only biopsies.

Very worried that I might be delayed if I need to do the op quickly - What can I do to ensure that this is not the case ?

User

Posted 14 Nov 2017 at 21:48

Hi,

I had similar concerns a year ago. My scans were 3rd Nov and consultant appointment 23rd. I was offered surveillance with a template biopsy or surgery or RT at the appointment but I made it clear I wanted surgery. He said the Regional MDT had a drive to offer surveillance but he'd recommend surgery.

I also kept mentioning my concern about mine being near the edge and he agreed to contact the surgeon straight after the meeting and before the MDT. It might have had an effect as the surgeon rang a couple of days later and fixed an appointment. As I left the surgeon's room I half jokingly said I was ready for surgery tomorrow or asap and I noticed his eyes move as if a thought came to him.

The day after I was offered an op on Friday 16th Dec and they'd just booked the theatre for the morning. I was told it was fast because no-one wanted surgery so close to Christmas, although I found it hard to believe.

The Macmillan Nurse played down my comment about mentioning speed as she said everyone wants treatment right away.

So my own recommend is to be focused on what you want and make sure they know you're worried about the location of the unknown lesion, and ask if they can contact anyone directly to speed things up.

Regards

Peter

Edited by member 14 Nov 2017 at 22:53 | Reason: Not specified

User

Posted 14 Nov 2017 at 23:17

Unless there is a cancellation and nobody before you wants it, the surgeons are not going to give you an early op unless there is real urgency which seems unlikely to be the case from what you say. The number of surgeons and how many ops they can perform in a given time is limited. You could perhaps say that you would be prepared to have the op at another hospital if this would provide a significantly earlier date. I am a little surprised that Croydon University Hospital (previously known as 'Mayday' when I was diagnosed there) are not doing radical Prostatectomy ops. I suppose it's part of the ongoing policy of concentrating expertise in fewer hospitals, so finding a suitable alternative hospital could be difficult. The Sutton Branch of the Royal Marsden is not very far from Croydon U Hospital but may also have quite a waiting list. As Peter say make your wishes known and ask for the earliest date your op could be done.

Barry

User

Posted 14 Nov 2017 at 23:43

Xander, you were given the option of surgery or active surveillance - they wouldn't be offering you AS if there was any reason to think you might need an urgent op and therefore they are unlikely to be able to justify bringing your op forward before other people who really do need treatment quickly.

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

User

Posted 17 Nov 2017 at 11:41

Hi,

I was told there was no hurry for the operation being diagnosed with T2 and a PSA 4.15. I wanted to get on with the treatment and pushed and got the operation pretty quickly. The result was that the cancer was poking out of the capsule but they had got clear margins but had regraded to T3b. That was in Nov 2013. I decided on adjuvant radiotherapy in March 2014. At the moment all is well PSA at 0.01ng/ml. Remember everyone is different their cancers are different. My advice is to get all the information you can, PCUK booklets are excellent the PCUK specialist nurse will help. Give the matter careful thought and formulate your questions and get answers from the consultants. Not all GP's are well versed on prostate cancer, I find the young new doctors the best, I had a really good consultation with a student GP. I might be an expert on me but I am not an expert on prostate cancer, you need to become knowledgable on you and your prostate cancer. I am very lucky, I found it strange when people stopped asking me how I was, they think I am cured I hope they are right.

All my best wishes, I will follow your story, please feel free to ask me anything.

NormanA

User

Posted 17 Nov 2017 at 16:30

Interesting Norman, it was a trainee GP who decided (intuition?) to refer John to urology with a PSA of 3.1

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

User

Posted 17 Nov 2017 at 18:05

Hi Lyn,

Not only are young GP's up to speed the young Lady GP's have in my opinion been the best, they seem to have more knowledge, understanding and sympathy and are much more willing to explain things. This also goes for consultants.

NormanA

User

Posted 25 Nov 2017 at 18:31

The Surgeon

=========

Met the surgeon - spoke about "margins" apparently sometimes when they handle the prostate where the robot holds the gland - it can accidentally tear but was assured that it does not always mean that the cancer would leak out. Was a little worried about that !

Also spoke about the fat pad around the gland - sometimes that can harbour lymph glands - he said that will be removed anyways but, he also said that it really unlikely to contain cancer cells

Forgot to ask the surgeon whether I could meet young (55+) people who have undergone prostatectomy first hand so that I could feel that it is going to be okay.

I want to do the op - even though Active Surveillance is an option for me. But, I am afraid that I might NOT BE MENTALLY STRONG enough to handle the consequences.

Cause I have never had to subject myself to so much pain etc. i.e. the reason I want to meet people hopefully this week of guys who have done this op - meet them firsthand. Anyone know any PCa groups where such people will collect THIS week ?

User

Posted 25 Nov 2017 at 19:11

I don't know about groups but if you speak to the PCUK nurses, they should be able to put you in touch with a mentor by phone - a man who has been through it and volunteers to speak to other men. When John was first diagnosed he was paired with someone of a similar age who phoned twice and was very helpful.

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

User

Posted 25 Nov 2017 at 19:18

Your mental strength is a worry for you. You will cope, partly because you will come to realise that you would be facing the same emotional challenges regardless of your treatment choice - radiotherapy means that you don't really know for at least 5 years whether it has worked, AS is no good for the nervous, whatever happens you may spend the rest of your life fearing that any ache or pain is new mets. It all sounds terrifying but every day, you will realise that you have survived and after a while you have a new 'normal'

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

User

Posted 26 Nov 2017 at 00:32

Hi XanderNina,

I asked my surgeon the same question about spilling cancer cells, he said it would not happen. He told me not to worry about it. If you want to watch a video of the robot surgery type robot assisted radical prostatectomy video into google.

I don’t know about the fat pad, they did not remove my lymph nodes but did remove my left seminal vesicle.

I was 67 when I had my robot assisted surgery. They assess whether you are capable of withstanding the surgery and if not they don’t offer it. They tend to have a cut off age of 70. I am not young to a 55 year old but I handled the operation fine with no pain and was home the day after the operation, I didn’t need any of the painkillers they sent me home with. My continence was a problem post op but was sorted with pelvic floor exercises. Erectile dysfunction is the only issue for me, I have had help but with no success.

I understand your concerns about the consequences I had concerns. All our decisions and indecisions have consequences and we have to weigh up what are the issues and what is important to us individually. When I read your story I get the feeling that you are mentally strong but you have some fears that are eating at that strength. I had fears as well, I can now look back at those fears that never materialised but they were real fears at the time. Write your concerns and fears in a list leaving spaces between each one, put it on one side and leave it over a weekend and then re-read them writing notes n the spaces, it’s like answering an email and leaving it overnight before you send it, in the morning you delete half of it or don’t even send it. I understand it’s not easy but don’t let it get on top of you.

My experience was very good and I never had any pain but that is not to say some people have pain.

I hope this helps. Let me know how you get on.

All the best

NormanA

User

Posted 26 Nov 2017 at 12:18

Hi I was 55 when I had RP I wouldn't say I am mentally strong and it was very stressful time.

That was 31.03.2014 everything went well in spite of all the worrying and I was allowed home the next day which happened to be our wedding anniversary.

Over 3yrs now since surgery all PSA results so far have all been undetectable last one being 7/07/2017, No ED or incontinence issues.

I don't take anything for granted next PSA test is in 4weeks time waiting for the results is very stressful, but feel very lucky thus far and would make the same choice again to opt for surgery.

User

Posted 27 Nov 2017 at 21:45

Hello Friends

Before I begin I would like thank Frank & Lyn and all the rest of you wonderful people who replied to my posts for the help & advice you give me & 100s of people over here.

I have a few questions

(1) Would 2 weeks or less of Kegel ... Pelvic exercises enough to cope with the initial lack of continence after the op (I am aware that it's just as imp. to do these exercises for the rest of one's life after the op as well ) But, does the amount of exercises have any bearing on the continence issue later on

(2) I was due to meet the uro-oncologist but for some reason because I have indicated that I would be leaning towards surgery or AS - they seemed to have cancelled that appointment. I would still want to meet this chap.

(3) I wanted to ask the surgeon how would he know what to remove in terms of nodes & nerves because all he has is the knowledge of possibly where my 2 lesions are based on the MRI.

Apparently in the US they use some fluorescent dye to check.

I have been told in the past they used to have a pathologist on hand to make a quick check at the operating table but this is a practice that is no longer in use.

It looks like over here they only test for +ve or -ve margins after they have bagged everything - by that time you are all stitched up !!!

Rgds as always

Xander

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