My dad has just been told he has Prostate cancer

User

Posted 17 May 2019 at 15:28

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 21:58

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 17:29

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 17:38

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 17:46

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 17:48 | Reason: Not specified

User

Posted 18 May 2019 at 20:12

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 21:34

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 21:38 | Reason: Not specified

User

Posted 19 May 2019 at 07:47

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 08:34

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 11:55

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 12:54

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 12:55

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 18:57

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 18:48 | Reason: wrong info

User

Posted 22 May 2019 at 19:03

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

Cheers,

Chris

User

Posted 26 May 2019 at 15:38

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 18:49 | Reason: Not specified

User

Posted 26 May 2019 at 16:56

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 09:43

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 11:32

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 11:52

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

User

Posted 19 Jun 2019 at 19:55

Hi everyone

just thought I’d give an update on my dad. Got the results of the bone scan, all clear thankfully!!!! Dad was offered RT or surgery and has opted for the surgery. Surgeon has said he is going to remove the nerves on one side of the prostate and hopefully leave the ones on the other (is this normal??) he also mentioned something about needing to check the lymph nodes when he was doing the surgery to be certain there was no cancer present even though nothing showed up on MRI so hopefully that will be fine. Surgery is 1st July so very quick turnaround. Hoping for speedy recovery, does anyone have any tips??

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