My dad has just been told he has Prostate cancer

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.

Thank you so much!

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.

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? 

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.

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.)

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 

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.

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.

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. 

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! 

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. 

Hi 

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!

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.

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

Cheers,

Chris

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 

Hi Userbc, 

That's great news! Such a huge relief isn't it. 

My dad in the end also decided on surgery. We do not have a date yet though. He is meeting the surgeon mid July so guessing we'll get a date then. 

We were also told its important to do the pelvic floor exercises as they will help post opp.

I'm guessing whilst in hospital they will provide everything you need but has anyone for a 'shopping list' for those initial days/weeks at home eg waterproof cover for the mattress etc? 

Thank you

Yes such a relief!! Everything has been quite efficient for us so far. The same day my dad had his appointment with the consultant for the bone scan results and treatment options he had his pre surgery assessment and a date. We were a little bit taken aback as thought we’d have more time but now my dad is eager to get it done and dusted. That list is so helpful thank you!! Think my dad is apprehensive about being out of action. He’s normally very hands on and likes to be busy, knowing he won’t be able to drive is sending him crazy!! Does anyone have any experience of the recovery in how it all works. We’re not sure how long he will be ‘bed bound’ or whether he will be up and about in the house able to potter on by the weekend. So many questions! 

Hi Userbc, that is a quick turnaround which is fantastic.

If he is having a robotic laparoscopic prostatectomy he will be out of hospital by the 3rd July and mobile. He will have to take things easy, the wounds are painful when moving for the first few days. He will have a catheter fitted during the operation which will remain in place for around 10 days. It’s weird when you first take a shower with a catheter tube hanging but you get used to it! I had a night bag on a self assembled stand for overnight. You’ve got to be careful not to move too much during sleep. The bag is pretty full by morning. About 9 days after my operation I awake to the night bag looking like red wine. I got checked out but apparently this happens when clots break away.

I had disposable night bags so just emptied it down the loo and put the bag in the bin. 

It’s also odd to be told that you will leak when the catheter is removed. My logical (or illogical) brain thought how can I leak when I was fine before surgery but continence recovers. The pelvic floor exercises are essential homework!

It is normal to spare nerves if there is cancer on one side or it is well contained and away from the nerve bundles. I had nerve sparing on one side only as the cancer was at the edge on the other side.

All the above can change slightly if there are minor complications but here’s hoping the surgery goes really well and he can start getting on with his life again.

Best wishes,

Hi everyone 

thanks so much for recommendations and kind words! Has anyone any experience on surgeons taking a look at the lymph nodes during the operation? Surgeon told dad he will do this to make sure for definite it hasn’t spread but he isn’t expecting to see anything. I feel like with this journey with every step of progress there is still always nervousness of awaiting some type of news. I know we’re very lucky to be in the potisitom we are with dad’s cancer but now we’re worryint about the lymph node check and then I’m sure after surgery we will be worried about the pathology report on the remove prostate, and then it’ll be the post surgery PSA. Such a rollercoaster but just trying to focus on the positives. Does anyone know how soon after surgery you can drive again or is this just surgeons recommendation?