Dad diagnosed - looking for some guidance

User

Posted 22 Nov 2021 at 18:53

Hi all,

First post here and sorry if it’s not etiquette to start new threads as I’m sure people ask the same thing all the time! My dad has just been diagnosed with Pca, and to be honest just feel in complete shock at the moment. I was hoping someone may be able to help shed some light on what happens next, as my dad always tries to protect us so not really sure the extent of the condition on what the follow ups are (he won’t let any of us go along to the appointments with him). What I do know is that he is Gleason 7 (4+3), 11/28 cores (?), PSA 8, and T2b. He apparently has a bone scan next - which has really worried me as understand that’s usually when they suspect there is mets- but not sure if it’s usual procedure? Also subject to the results of his bone scan it looks like he’s been offered RT or robotic prostatectomy - any advice really appreciated.

User

Posted 23 Nov 2021 at 09:38

Thanks all for your responses, that’s extremely helpful and reassuring to hear. He is hopefully having his bone scan this week, I will keep you informed as to how he gets on and what treatment he opts for (HIFU has also been mentioned?).

thanks again - can not tell you how much better I slept last night after reading the messages.

User

Posted 22 Nov 2021 at 23:02

I wouldn't get too stressed about it. Getting prostate cancer is basically a matter of being a man and living long enough. Incidence goes pretty much in proportion to age: around 60% of men have it at 60, 70% at 70, and so on. Localised prostate cancer is an eminently treatable condition. Most men with prostate cancer will die with it, not from it.

From the figures you've quoted, it's EXTREMELY likely that your dad's cancer is localised and he'll be treated with curative intent. The bone scan is completely routine and a standard part of the diagnostic process. With a PSA of 8 his cancer is very, very unlikely to have spread to the bones.

Most of us here have "been there" and come through it. I was personally diagnosed in 2018 at the age of 55, had radiotherapy in 2019 and here I am living a happy life free from cancer in 2021.

Best wishes,

Chris

Edited by member 22 Nov 2021 at 23:03 | Reason: Not specified

User

Posted 08 Dec 2021 at 16:07

So Dad has just been to follow up appointment following his bone scan. There is a small mark on his rib that they’re not sure on, so they’re now going to do a PET scan to look further, which will be in the next ten days. The waiting is absolute agony and it seems like we are constantly thinking we are going to get an answer and then we are told more tests are required. It doesn’t help that I’m not at the appointments so never sure I’m getting the full story…!

User

Posted 14 Jan 2022 at 02:07

I think it is good to have a positive attitude and hope for a good outcome but also important to be realistic. PSA doesn't really indicate how serious the problem is, only that there might be a problem that needs investigating. A man can have a PSA of 80 and no cancer or a PSA of 3 and multiple bone mets. So while it is good that his PSA is 'only' 8, this does not mean that he will be on a curative path or that the suspicious area is unlikely to be a met. I think I would be frustrated by the delays caused by these multiple scans but if the outcome is that he can go into radical treatment with confidence, it will have been worth the wait.

If it is concluded that the suspicious area on his spine is a met, it doesn't make a huge difference to longevity whether there is one bone met or 10 bone mets seen. We have (or have had) members here with bone mets who are still here and living good lives 10 or 15 years after diagnosis.

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

User

Posted 06 Feb 2022 at 17:01

Originally Posted by: Online Community Member

Thank you Elaine and Lyn, both incredibly helpful as always. So is best approach perhaps to go for a second opinion at the RM, and also meet with Onco at current hospital?

Sam

Yes, that is what I would do. Contact the urology nurse and let him/her know that you would like a 2nd opinion. Your private health provider may want a letter from the GP and your preferred onco at RM may also want a referral letter from the GP or from hospital urology department. It will work out quite well if you see the RM first snd then the local oncologist as you will have an idea in your head of what the RM might offer privately or on the NHS and can make a comparison.

Whatever treatment plan your dad is offered, it is unlikely to be curative. SABR to the bone met will slow that tumour, stabilise the bone and reduce any pain or other symptoms but it won't treat the microscopic spread that has probably already happened

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

User

Posted 01 Apr 2022 at 12:03

Met with urologist today from RM. We have decided to go down the surgery route as it will be the best way to clinically assess once and for all what the spine is (as PSA post op will give true picture on what’s going on).

Disadvantages are that given disease burden at prostate, it is not going to be fully nerve sparing (at least on right side), and urologist thinks there’s a 50% chance of recovering erectile function (got to admit I cringed a bit here and wanted to sink away into the floor), but nevertheless on balance thinks it’s the best route for dad. Overall - feedback was that he needs to lose 7-8kg ahead of surgery to reduce complications both during and after.

Surgery date is 16th May, still can’t believe we have landed here given where we were a month ago - what a real rollercoaster.

Quick update on mum, she’s recovered super well from surgery and 5 days radiotherapy booked in for two - three weeks time, all looking positive there. On a personal level she really struggled with return to work and her management have just not been supportive at all (asking her to take holiday instead of sick leave!) - so this week she took the tough decision after 21 years to throw it in! Big change for her but if the last 6 months have taught us anything, health and family comes above all else.

Keep safe everyone x

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User

Posted 22 Nov 2021 at 23:02

Most of us here have "been there" and come through it. I was personally diagnosed in 2018 at the age of 55, had radiotherapy in 2019 and here I am living a happy life free from cancer in 2021.

Best wishes,

Chris

Edited by member 22 Nov 2021 at 23:03 | Reason: Not specified

User

Posted 22 Nov 2021 at 23:52

Hello,

My husband was diagnosed earlier this year with similar numbers. PSA 8.3 Gleason 4+3 but was T3a. He had a bone scan and they said it had spread to his pelvic bone, we got a second opinion and PSMA pet scan which revealed this wasn’t the case. It had spread to one lymph node though….maybe two.

He has started on HT already, and is now booked to have RARP (robotic assisted radical prostatectomy), but is very likely to also need RT when recovered from op. He is being treated with curable intent so we are hoping for the best. We’ve made lots of lifestyle & diet changes too so we can help ourselves as much as possible.

It must be so difficult if he won’t let you go with him to any appointments. With it being a new diagnosis, hopefully in time that will change.

Best of luck to your dad and try not to worry too much. (Easier said than done I know…and we were all there worrying just as much at one point…and still have some of those days) As many people will tell you it isn’t a death sentence and there’s so much that can be done.

User

Posted 23 Nov 2021 at 01:40

Hi,

We have many a family member here looking for support and also providing it for a man/men often acting as an intermediary as for various reasons men don't want to post directly or in some cases know concerned family are here looking to help them.

I am going to make a few suggestions that you may find helpful. Even if Dad won't let you attend appointments, it would be useful if you could ascertain all the details of his diagnosis and put this into his profile/bio as information in threads tends to be not easily found over time. Members are able to click on any post of a member's avatar and see details and this sometimes helps in making more meaningful replies.

Sometimes you are able to find answers to questions by using the search facility but in truth it doesn't work that well and sometimes it is easier to Google to find posts people have made as these are anomalously posted on the net.

This Charity does provide some very good information about PCa and various treatments in the Tool Kit and I recommend you download this or ask for a free copy https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

Edited by member 23 Nov 2021 at 01:45 | Reason: to highlight link

Barry

User

Posted 23 Nov 2021 at 09:38

thanks again - can not tell you how much better I slept last night after reading the messages.

User

Posted 23 Nov 2021 at 09:52

How old is your Dad?

User

Posted 23 Nov 2021 at 10:12

He’s 60

User

Posted 29 Nov 2021 at 21:06

Quick update - bone scan today and (once again) wasn’t allowed to attend! He asked if the radiologist saw anything and she said a small mark on one of the ribs, but nothing anywhere else. Apparently could be a bruise but now back to waiting game… hoping for appointment next week. Thanks all

User

Posted 29 Nov 2021 at 23:43

So sorry to read this! It’s such a difficult time getting the diagnosis and then all the waiting. Hopefully they will both have a plan in place soon and things will seem a little better.
Fingers crossed whatever was seen on your dads rib is nothing. As I told you before my OH got a positive result on pelvis from the bone scan but that changed with a second opinion and PSMA pet scan.
Take care

User

Posted 08 Dec 2021 at 16:07

User

Posted 08 Dec 2021 at 19:01

Unfortunately, there is not one all embracing test and patients can be subjected to several tests in order that consultants can establish if and to what extent they are affected by PCa and even then conclusions are not always 100% correct. Sometimes there is a suspicion that despite negative tests a man is affected by PCa, so some men have repeat or additional tests, all causing prolonged anxiety and stress for the men (and family) who are on tenterhooks, sometimes for a long period which again is extended as their response to treatment(s) is established. Even then the situation can be exacerbated by cancelled and deferred appointments. It can indeed be a tough and particularly rocky journey for some and not easy for anybody.

Hope Dad soon gets a determination

Barry

User

Posted 30 Dec 2021 at 17:50

Hi all,

just a quick updated, dad had his PSMA PET CT scan just before Christmas (23rd Dec), it was cancelled twice but fortunately the third day he got in. The MDT meeting is tomorrow and then next week we will have the results from what is hopefully the final scan. Will report back once results are in, hopefully the mark from bone scan was nothing but I’m fearing the worst…!

thanks all

User

Posted 07 Jan 2022 at 12:51

One more update… MDT was delayed until today and Urology nurse called this morning. The spot on the rib was judged to be nothing, however the PET CT did flag another mark on his spine. We now have to await a date for an(other) MRI to look at what this is…..!

In the meantime it seems they want to meet with my dad to discuss treatment options, which seems slightly counter intuitive given the nature of this other spot has not been properly established?

User

Posted 08 Jan 2022 at 12:26

very similar diagnosis to me 19 years ago

i had RP followed by RT, PSA now 5 waiting on scan before starting HT

they gave me a bone scan after the RT but negative

tesearch your dads options, I’ve had no problems with water works but understand some men have with robotic

look at brachytherapy, speak to oncologist and urologist before deciding, good luck

User

Posted 12 Jan 2022 at 11:40

Update from appointment today (unfortunately i am receiving this second hand from my dad)… confirmation that a solitary spot was shown on my dad’s spine (rib confirmed to be nothing) from the PSMA PET CT.

They do not want to commence hormone therapy ahead of doing another MRI on the spine. I can only assume this is to confirm the nature of the lesion, but from everything I have read I am fearing the worst scenario. Why would they not just get hormone therapy going right away??

Feel completely lost. Assuming it is just one metastasis I am hopeful that it is caught so early, that the prognosis is not too bad and treatment will keep it at bay for a while. Now to wait for another scan.

User

Posted 12 Jan 2022 at 14:30

It's possible HT is being deferred so as not to shrink suspect spot before MRI gives clearer picture of what it is.

Barry

User

Posted 12 Jan 2022 at 15:02

Thanks Barry, and yes I think that’s the case. From all I’ve read PSMA PET CT seem to be very accurate though, so not sure how additive an MRI will be (obviously I’m not the expert though!!).

Thanks again,

Sam

User

Posted 12 Jan 2022 at 15:32

radiologists have been looking at spinal mri for possible mets for years , it is a completely different modality and the image can be manipulated to optimise diagnostics . I would re iterate above comment that it would be rare to have a met with a psa of 8 .

If your Dad has not had an mri before please warn him its noisy and he will need to be still on his back in the machine for a while .

Carpe Diem

User

Posted 12 Jan 2022 at 19:42

Thank you Gareth. That’s really helpful insight. Apparently the MDT were a bit perplexed by his results so it sounds like the MRI will just give them the confirmation either way.

He hated the MRI first time so sure this won’t be any easier!!

will report back when we have (hopefully) final diagnosis and treatment plan set….. thanks all,

Sam

User

Posted 12 Jan 2022 at 21:07

Originally Posted by: Online Community Member

Hi Keepfighting

I get the impression you are spending a lot of time researching the various possibilities. Whilst I understand this ……. it is very easy when doing this to focus on the worse possible outcomes. It’s a bit like reading the fact sheets that come with tablet’s ……. who would ever take an aspirin if we thought we might get any of the nasty side effects mentioned!

From what you have said it’s unlikely dads PCa will not be treated with curable radical treatment. I agree with above that hormone treatment has probably not started because they don’t want to shrink the cancerous cells before the next scan. Also, if dads likely to have radical treatment in the next month or so they probably wouldn’t want to put him through HT and it’s side effects if it’s going to make little difference. PCa is generally a slow growing cancer so waiting few months is unlikely to make much difference esp. with a PSA as low as dads.

Meantime what dad can do is prepare himself for treatment e.g. get fitter and do pelvic floor exercises.

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Dad diagnosed - looking for some guidance

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