My dad has just been told he has Prostate cancer

User

Posted 16 May 2019 at 12:44

I don’t really know where to start here but desperate for some advice or kind words from people who are in or have been in similar situations.

My dad is 59 and has recently been diagnosed with prostate cancer. His PSA was high and so he had an MRI and biopsy giving him a Gleason score of 4+3. The doctors are more than confident that the cancer is localised and hasn’t spread beyond the prostate due to the biopsy and MRI results but he is still being referred for a bone scan which apparently is ‘routine procedure’ before suitable treatments can be discussed.

My entire family is beyond devestated and shocked. You never think something like this will happen to someone you love. My dad is desperate just to have the surgery and move on from there. But we are still worried something sinister might show up on the bone scan. Has anyone been in a similar situation whereby doctors sure cancer hasn’t spread and MRI clear but then bone scans show something different? I’d really appreciate if anyone has any similar stories and what has happened post surgery. Thank you

User

Posted 16 May 2019 at 13:09

Click on my nom-de-plume ‘Bollinge’ and you will see my story, and the same goes for others here.

Maybe you will create a similar profile for your father.

Gleason 4+3=7 is classed as intermediate cancer and is usually curable like mine was. l suggest you order the information-packed ‘Toolkit’ folder from this website.

It’s definitely not the end of the world, as many men here will attest to.

Best of luck to Pop.

Cheers, John.

User

Posted 16 May 2019 at 13:26

Thanks so much for responding. His PSA was roughly 8 were just anxious to have the bone scan come back and confirm that is is clear. Keen to get some sort of treatment path decided and go from there. Thank you for your kind words

User

Posted 16 May 2019 at 13:32

I think everyone has a bone scan onece cancer has been found.
It's not any hint or suggestion that they think it's spread, but they do need to rule that out.

User

Posted 16 May 2019 at 14:49

Daddy’s PSA is not ‘high’. My mate who I was with yesterday was 300 odd when diagnosed a few years ago and is down to 18 now with tablets, I think the record is in the thousands!

I am sure Dad will be offered a treatment plan ‘with curative intent’, and should be out of the woods within a few months. Do get that information pack, and come back here anytime with any further questions.

Cheers, John.

Edited by member 16 May 2019 at 14:53 | Reason: Not specified

User

Posted 16 May 2019 at 19:08

Thank you so much!

User

Posted 16 May 2019 at 19:21

For men diagnosed with what is thought to be localised prostate cancer, the issue of bone scans is a post code lottery. Some NHS areas give every man a bone scan after diagnosis, while others only do a bone scan where there is reason to suspect spread. Since they are already talking about the possibility of surgery, they clearly don’t suspect bone mets so it seems in your case to be routine.

Bollinge is correct; the highest PSA we have seen among members of this forum was 13,000 and my husband’s urologist once had a patient with a PSA of 160,000! In contrast, we have seen men with a PSA of just over 3 who had mets. The PSA indicates a problem but isn’t always a reliable measure of how serious the problem is.

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

User

Posted 16 May 2019 at 21:34

I wonder what the highest is without mets?

The highest I've heard of without mets was 130 IIRC, which was my GP's father.

I don't know what the staging was, but I presume it was confined. He had an op which I've never heard of which consisted of vacuuming out all the prostate cells, but not touching the urethra, so there's no incontinence issue afterwards. I don't know which country it was in, but not the UK. As far as I know, it was a success.

My GP told me this when I said to him I'd never heard of anyone else as high as 57 (mine) without mets, at a point when I was still waiting to be checked for mets.

User

Posted 17 May 2019 at 00:00

The highest I can remember on here was around the 120 mark.

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

User

Posted 17 May 2019 at 08:09

Thanks for replying. I guess our concern at the minute is the bone scan. The doctor said he isn’t expecting anything to show up but still nerve wracking until we get the results. If MRI was clear is that a good indication bone scan would be or are they not linked?

User

Posted 17 May 2019 at 08:22

I think they are just doing bone scan as a routine one hopefully it will be very nerve wrecking for you but you have to stay positive my husband has just had his removed 8 weeks ago and he has just had psa 0.1 so doctor is 100 percent it’s all gone so hopefully it will be the same with your dad keep your chin up and there is always people on here to talk to and will help with questions if they can this forum and the cancer uk forum really helped me with advice hope all goes well xx

User

Posted 17 May 2019 at 09:05

The MRI scan will have been just the pelvis area, and concentrating on prostate, and the tissue nearby such as seminal vesicles, lymph nodes. It's a special type of MRI called multi-parametric (mpMRI) which is optimised for detection of changes in soft tissues. It will include the lower spine, pelvis and top of the femurs and they would have commented if they saw significant changes in these, but it's really for checking the prostate and other soft tissues.

The bone scan is whole body, and works a completely different way. They inject a tracer, wait a couple of hours for it to be attracted to any bone mets (or more strictly, faster growing areas of bone, so it also identifies any healing bone fractures), and then you lay on a table while several cameras do one slow pass up your whole body (takes about 40 mins) and can see where the tracer has concentrated. It's not noisy or claustrophobic, if that's any concern. The tracer is radioactive (which is how the camera sees it through you body and clothes) and you need to avoid getting very close to children and pregnant mums for 6 hours or so, until it's decayed away.

Sometimes a whole body MRI scan is done too, but not at the first stages of diagnosis. This would be if they suspect distant mets for some reason which other scans have not been able to find.

User

Posted 17 May 2019 at 09:21

Originally Posted by: Online Community Member

.....my husband has just had his removed 8 weeks ago and he has just had psa 0.1 so doctor is 100 percent it’s all gone...

I hope his post-operative PSA is <0.1, “undetectable”. If it is 0.1, he still has a problem.

Cheers, John.

User

Posted 17 May 2019 at 10:03

We had a brief talk on this at the Mount Vernon support group on Wednesday.
The consultant said the high resolution PSA tests (I guess that's the two decimal places version) were for patients after RP, and were unnecessary in other cases. This was in the context of, if you are asking your GP to do the followup PSA tests, they need to be the high resolution tests if you've had a RP. (If the hospital/consultant is requesting them, they will know this anyway.)

User

Posted 17 May 2019 at 11:01

As I have said here before, many times, my billion-pound super-hospital’s lab here only tests down to 0.1 anyway, so <0.1 is classed as ‘undetectable’.

I have spoken with one urological Professor and two consultant oncologists about what they call super-sensitive assay, and they all agreed it causes more trouble and worry than what it’s worth, but the one oncologist said it might be of use in rare cases post-prostatectomy.

Cheers, John.

User

Posted 17 May 2019 at 12:38

That’s reassuring to hear. How did he recover after the operation? Any tips? We have read some of the side effects can be pretty bad

User

Posted 17 May 2019 at 14:04

Hi,

Read your post and it certainly struck a cord with me. I am 59 and now 5 weeks post RARP and beginning to get back to normal after the op. Almost fully continent, exercising every day, stomach wounds almost fully healed and beginning to enjoy life again after a difficult few months. Have the all important first PSA results meeting with the surgeon in three weeks time, so fingers crossed.

Never had any Pca symptoms so this whole journey has been a shock.

This web site / forum has been so helpful and some of the regular contributors are a mind of fantastic information. Get your Dad signed up and he will soon become very well informed and understand he is only one of many many men on this difficult journey.

I have now made six or seven good friends in the last few months we have had or have got Pca and it has given my life a different perspective. There are many positives that can come from this difficult condition.

As a result of this cancer my wife and I have just sold our house, cleared a small mortgage , banked some valuable funds and are going to enjoy doing some things we would not have done if I had not been diagnosed. It has made us plan our next 10 / 15 years (hopefully) as opposed to just getting old and drifting through life.

Good luck to your Dad and his close friends and family. Don't let this crappy disease define him.....make him see it as something that will improve his life and relationships and ensure he remains in a positive state of mind.

Lots of love and good luck.

Steven

User

Posted 17 May 2019 at 15:50

Originally Posted by: Online Community Member

That may be true of the lab that this particular urologist uses, but will not apply to other members here.

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

User

Posted 17 May 2019 at 16:01

Hi Steven

thank you so much for your words. I showed your post to my dad and it really gave him a lot of comfort. It’s so nice to know that others are going through the exact same thing. Would you mind me asking what your original gleasing score was and how long you waited for the surgery appointment?

Were very eager to just get the bone scan out the way and move on to treatment options. The diagnosis is a massive shock and I must admit the main thing which we are all really struggling with is thinking ‘my dad has cancer’. I wish we could just fast forward the next couple of months!! Your outlook is fantastic.

I hope your PSA results go okay. Thanks again.

User

Posted 17 May 2019 at 16:12

Originally Posted by: Online Community Member

That may be true of the lab that this particular urologist uses, but will not apply to other members here.

Well, this was in the context of patients who are getting their PSA tests done by different labs than at the hospital.

I just looked back at all mine, and they're all to 2 decimal anyway (analysed at Luton & Dunstable Hospital path lab), so maybe that's all they do there even when not strictly required. My initial charity funded test has no decimal places, so presumably a cheaper analysis. I spoke with a different charity just recently, and they get their PSA analysis done for £4 each - those may be no decimal places too.

User

Posted 17 May 2019 at 16:28

My PSA was 16.7 on diagnosis, up from 2.2 the last time a GP bothered to test me, seven years earlier. I went every year religiously to the clinic with a blood test form marked ‘full blood count’, which as it transpires was not ‘full’ by any means, as it didn’t include PSA. My Gleason score was 4+3=7, like your Dad.

Anyway, my PSA is now undetectable, and I am cancer-free after my prostatectomy.

Cheers, John.

User

Posted 17 May 2019 at 22:58

hi.

have a look at my profile.

feel free to ask anything. glad you have shown posts to your dad, I only found forum after my op.

why surgery, may I ask ?

scary I can empathise. Note : We had to ask for a lot of information in Uk. Brother in Australia was given everything. . see my profile , which includes data about me and brother.

We were both dealt with professionally, albeit different approach.

take care it will get a lot better.

User

Posted 18 May 2019 at 18:29

I think my dad likes the idea of it being removed and gone-as silly as that sounds.

Were all just on edge about the bone scan. Keep trying to be positive and leaning on what the doctors have said, but still worried something might show up.

Does anyone know whether they would know from the biopsy/MRI he has had that it had spread? Or could they both show no signs but then bone scan shows something up? The doctor told my dad he isn’t expecting to see anything, clinging onto those words at the minute.

Bone scan scheduled for this Thursday, hope results don’t follow too far after that. Thanks again everyone

User

Posted 18 May 2019 at 18:38

Hi Userbc,

my dad has also just been diagnosed, with PC. He is Gleason 4+3=7 the same as your dad. My dad is a few years old than yours in his 60s. Dad has cancer in both lobes but we've been told it is contained. He was given a bone scan and the wait for the results was awful, your mind is all over the place. We were told this week the scan was clear, which was amazing. Now our minds have turned to the massive dilemma of which treatment, surgery v RT/HT, which is how I came across this wonderful forum.

Just to share We were also advised by the nurse specialist that PC is hereditary so other members of our family have had a PSA test. Not sure if your dad was told this or if it is relevant for you.

Just seen your post as I was about to send the above. We were told that it is possibly for the cancer to spread to the bones without affecting nearer areas or lymph glands. Not really what we wanted to hear when already trying to get your head round a cancer diagnosis.

User

Posted 18 May 2019 at 18:46

The biopsy won't tell if it's spread.

The MRI scan will usually show if it's broken out of the prostate locally, if it's in the seminal vesicles, or if it's in the lymph nodes nearby. Radiographer might also notice if there's a significant spread to pelvis, lower spine, or top of femur which are also caught by that MRI scan, but that's not the main thing they're looking for in that MRI scan.

The MRI won't show distant spread, as it only covers the area around the prostate/pelvis. (A full body MRI can be done, but not at this stage.)

Sorry, but you just need to be patient. In my experience, all results take 3 weeks to get back to you, but might be different in different hospitals.

Edited by member 18 May 2019 at 18:48 | Reason: Not specified

User

Posted 18 May 2019 at 21:12

Hi Nicha,

can I ask how long you waited for the bone scan results? They’ve eluded to the fact that it’s contained so we are hoping for the best, it’ll be a shock if it has spread especially as they said it seems to be contained. The waiting game is definitely the hardest part. Has your dad made any more progress on a treatment decision? It really is so good to know and hear from others in similar situations so thanks so much for taking the time to post!

User

Posted 18 May 2019 at 22:34

Originally Posted by: Online Community Member

can I ask how long you waited for the bone scan results?

I keep a detailed diary, so I checked this for me, and the answer is an anomaly, but one which you might also try to exploit.

Normally at my hospital, there's a weekly multi disciplinary team (MDT) meeting where all the consultants discuss all the test results that have come back over the last week and decide on the next actions for all their patients. After the MDT meeting, invites are sent out inviting you for a consultation in 2 weeks (to allow for post, and give you some advanced notice, and we're already 1 week after the test or scan at that point, so that's the 3 weeks).

I was also in a hurry to know (who wouldn't be), and I got my Macmillan nurse to setup my next consultant appointment a couple of hours after the next MDT meeting, which was nearly a week after my scan, so hoping the scan report would have been done by then. This way, I got the result in 6 days, which is very unusual (it was a once-off for me).

So, you could ask what day they have their MDT meeting, and try to get an appointment setup in advance which is later that day or the next day, which might speed things up.

Edited by member 18 May 2019 at 22:38 | Reason: Not specified

User

Posted 19 May 2019 at 08:47

My dad got his scan result a week after having it.

When we got the biopsy results the hospital had already referred dad for the bone scan and also to the cancer unit at a diff hospital. Dad received a call for both appointments quickly (for all appointments the hosp has called dad rather than posting letters so I think we have thankfully got appointments quicker) so he got the scan results when we met the surgeon and oncologist.

My dad is still considering treatment. Initially he was thinking surgery just to have it removed and I think he didn't want the months of treatment of HT/RT. We have also been told there is a 6-8 month wait for RT. Surgery is a 6-8 week wait but I think on having time to consider and reading about it surgery is such a huge step and has greater risk of long term side effects and possibly dad may still need RT/HT after anyway. Both the oncologist and surgeon have recommended their treatment routes, which hasn't helped the feeling of confusion to be honest.

User

Posted 19 May 2019 at 09:34

It isn't that there's a 6-8 month wait for RT, but that a man needs to take hormones for that period of time before RT in order to maximise its effectiveness. I went down the HT/RT route (on the advice of both my urologist and oncologist) and personally I'm pleased I did. Although the treatment is certainly not without its side-effects, for me they were preferable to those associated with surgery.

Unfortunately there is no one treatment that's right for everyone. Surgery and RT have very similar long-term success rates, and many men are faced with making this decision themselves. The important thing is to make a decision and be happy with that decision - don't start thinking "what if...".

Best wishes,

Chris

User

Posted 22 May 2019 at 12:55

does anyone know if the bone scan results can be given my phone or do we need to Wait for the letter confirming the appointment and then eventually get the results at said appointment?? Wish they’d ring as soon as they knew haha!! Dads bone scan is tomorrow. Glad for it to be done but then it’s the agonising wait. He went to see his GP today who he has been with for years who went through all of his results so far with him and made him feel reassured I think. GP said it’s a low volume tumour and he highly doubts anything will show on bone scan. I hope he is sure as don’t think they would say something like that without being certain? As we are clinging on that sentence!

User

Posted 22 May 2019 at 13:54

Hello If it is any help to you my husband was 4+3 with localised spread psa10.8 and his bone scan was clear.

he went for r/t and although had bit of a rough time getting over it is now getting rapidly better. psa undetectable at last count.

but I know full well how awful it is to come to terms with the diagnosis and then the wait between all that has to be done.

Will be holding you in my thoughts tomorrow as your dear Dad has his test and will watch for your post on the result.

I know you will give him all the love and support he,ll need to get through to better days which will surely come

The only thing you know is you never know,so,keep trying

User

Posted 22 May 2019 at 13:55

I hope your Dad will be ok. My husband was diagnosed in 2010 and has had various treatments including radiotherapy and regular bone scans. It is always scary waiting for results and everyone has a different experience but we have found that if you keep as active as you can and rest when needed, life can still be as good and the different treatments can keep people well for a long time. Your consultant will be able to help with any questions and there are usually specialist nurses if you have any anxieties. This forum is great and every person has their own experience but is good for family too.

User

Posted 22 May 2019 at 19:57

Hi your dad is in good hands I'm sure

my PSA was 32 rising to 42 before I begin treatment and my Gleason was 7

I elected to have the radiation option and it was decided by my consultant that my particular radiation treatment would be HDR. Until that comenced, i was started on Hormone pills and this involved nothing more than taking two pills daily for eighteen months (Bicultamide and tamoxifen as I decided against the implants) and these pills dropped my PSA down to 3.2 within a week.

I then had 14 sessions of radiation followed by Brachytherapy and which was a day procedure. I had a total of five days off work (after the Brachytherapy) and the only side effects that I had was fatigue after the radiotherapy, ED and that was basically it. Oh i also grew man boobs and had a sore nipple before the end of the course

It is now three years after the completion of my treatment and I had my PSA results given to me at my cancer centre yesterday and it had rose slightly to .7 and this small rise was as expected by the doctor as I am off of the hormones, my man boobs have gone, and my testicles are once more producing testosterone. (Thanks Chris for correcting my mistake about the Prostate producing testosterone, I did in fact know that the Prostate does not produce Testosterone but the brain did not engage whilst typing, after all we all read all we can about this disease once we have it)

The bone-scan is to check if the cancer is outside of the prostate but with such a low PSA i suspect not (fingers crossed)

god luck to your dad (i suspect he wont need it though)and if you need any advice reassurance or advice its available on this site. Get your dad on to it and let him talk with others who have gone or are going through the same thing and all the details of the various treatments are available here and from the guys that have had them not from literature

Edited by member 26 May 2019 at 19:48 | Reason: wrong info

User

Posted 22 May 2019 at 20:03

The prostate doesn't produce testosterone, Bobby. The testicles produce testosterone.

Cheers,

Chris

User

Posted 26 May 2019 at 16:38

You are correct of course hence the old treatment of castration. The adrenal glands also produce small amounts of Testosterone and the ovaries in women also produce small amounts. Thanks for correcting my schoolboy error.

Edited by member 26 May 2019 at 19:49 | Reason: Not specified

User

Posted 26 May 2019 at 17:56

Like your Dad my Gleason score was 4+3=7, PSA 7.8 I had an open radical prostatectomy, the post histology showed it was not contained my staging was T3b. I’m by not means in the clear and not curable. Presently on HT.

It will be 13 years this coming Friday since my RP op. 31st May 2006. Aged 57. I feel as fit and as agile as any 70 year old. Maybe drink a little more than I should.

I live in Italy and when I’ve had bone scans I get the results before leaving hospital. With MRI/CT or PET scans I usually have to wait a week. My bone scans have always been clear. Unfortunately I can’t say the same about my PET scans. They usually pick up on the odd lymph node, which I get zapped.

I know it’s easy for me to say, but try to stop worrying so much.

Cheers

Stu

User

Posted 28 May 2019 at 10:43

Hi,

My Gleason was 4:3 =7 and bone scan came back with a small spec on my eye socket. I remember badly damaging this eye when I was 5 years old and an x ray confirmed it was not an issue. Scary time but good outcome in the end.

I had to wait 14 weeks for my RARP and this was after chasing the surgeons secretary several times.

My continence is good and only use one Tena 1 during the day to catch a few dribbles and I am dry at night. Still have total ED at present but have felt a few stirrings in the last few days and this has surprised me as I has no nerve sparing during the op. I have learnt to cope with the loss of erections and just see it as a price I have had to pay to stay fit and healthy for the next 20 years. Haven't used my pump yet or taken any viagra or the likes. My wife and I just laugh it off at present and we will cross that bridge in the next month or so.

Meeting my surgeon on the 12th June and will get the PSA result at this time. Fingers crossed. I have mentally prepared for follow up salvage RT and or HR, so I will not be too disappointed if the PSA is not below 0.1

Most of my real knowledge comes from this site and the marvellous contributors on a daily basis. There are some great characters on the site and can't thank them enough for sharing their experiences so open and honestly. You can feel the anger, frustration, resignation, love, joy, disappointment and relief in many of the posts and whatever the sentiment someone is there to help and support and offer a kind work of advice and comfort.

Hope your Dad is coping and keep him positive for the journey ahead. It is not the journey he may have planned but it can be a rewarding and fulfilling journey that could in a way enrich his life and give life some meaning and context.

Lots of Love and best wishes,

Steven

User

Posted 28 May 2019 at 12:32

Hi Steve

thats quite a long wait for surgery!! I think my dad is hoping if he goes down that route he has a bit of a wait to prepare and potentially go on holiday! But that seems a very long time to wait.

im so happy that it all went well for you especially the recovery! The incontinence issue is the main thing my dad is worrying about, but there are so many positive stories regarding that that I think we should stay optimistic.

Bone scan was done on Thursday. My dad rang the nurse today who said the MTD meeting is this Thursday and he should have an appointment some time next week to discuss the results and his treatment. Absolutely agonising waiting, especially as we know they’ll have the result on Thursday. I think we’re all just aching for all the news to be out the way for now so we can focus on a treatment and start seeing the other side of the hill.

Speaking to all of you lovely people has definitely helped!! So nice to speak with actual people who you know know exactly how you feel. Thank you for taking the time to post

User

Posted 28 May 2019 at 12:52

Hi,

My wait was about normal for the NHS region I am in. (Northants / Leicestershire) It is a good time to plan and prepare and just get your head around this thing. Pca is very slow growing so there were no concerns about the wait and the possibility of it metasing in that time span.

Having a holiday beforehand is a great idea. Takes the mind off the issue for a short time.

The first couple of weeks after the op are just miserable and at least if your Dad knows this it will not come as a shock. The Catheter experience is just horrible. Looking back now it does soon pass and the real recovery gets going after the catheter is out.

Good luck for the results of the bone scan and then for the RARP preparation and wait.

Lots of Love and best wishes,

Steven

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