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Inconclusive Bone Scan

User
Posted 07 Jan 2023 at 12:43

Good morning, 

This is my first post, I'm really struggling (currently sat here with tears rolling down my face) as my OH has just been diagnosed with Prostate Cancer over the Christmas Period. 

He is a very young 50 year old, non-smoker, never drinks alcohol, goes to the gym daily, doesn't eat processed food or dairy/sugar, great physique, has the appearance of being in his late 30's - one of the healthiest people I know - yet he has a PSA score of 5.3 back in December 2022, had an MRI scan that showed a couple of suspicious areas in his prostate. He then had a biopsy, where 16 cores were taken - three came back positive for caner - one with Gleason score of 6, but two with an aggressive Gleason score of 9.  I should also mention that he is of African heritage, which I believe doubles his risk of aggressive prostate cancer - but he has no known relatives with it - his father is still alive, same with his brothers. He has no pain anywhere in his body, including his prostate or rib area. He also has no issues with urination, his bowels etc.

The consultant was confident of a curative approach at our meeting on 15th December (when we were told the news), but wanted a bone scan to check it hadn't spread to his bones. We went for that on 28th December and got the inconclusive results yesterday - which (without my OH knowing has me worried - even though i remain positive with him). The bone report states "subtle multi-focal uptake in the anterior left 5th rib, left 9th rib and right 8th rib - these are non-specific, likely to represent prior injury but we can not entirely exclude metastases".
They have a meeting of consultants, including another radiographer on Thursday morning and we have a meeting with them on Thursday afternoon. 

I was wondering if anyone else had been in this situation or can offer any advice. We have three children and can't lose him.

Many thanks in advance
Sarah 

 

User
Posted 21 Aug 2023 at 19:07
Mark

I would definitely push for the RARP - although my biopsy was Gleason 3+4=7, after the surgery it was confirmed as T3b Gleason 4+5=9 however although the RARP was non-nerve sparing it was still successful based on the post surgery PSA being <0.01

So basically they were able to operate with success on a G9 T3b even if they were not aware of it before they started.

User
Posted 07 Jan 2023 at 12:52

It's never good a PC diagnosis but most off us on hear have been through your anguish caught early it is curable I was psa 24.9  gleeson 9 2 years on after 37 lots of radiotherapy and 2 years on hormone therapy psa now 0.01 and doing ok it is a slow growing desease lots off treatment paths loads on here many many years since diagnosis even those incurable live long lives with treatment stay calm please stop crying and be positive and you will see light at the end of the tunnel keep in touch loads off experience on here to help you through good look with his treatment gaz πŸ‘

User
Posted 07 Jan 2023 at 14:06

My bone scan was clear but don't panic until you have the full diagnosis you are in good hands the treatment is  excellent they will have a treatment path planned and will give you the choice keep in touch gaz πŸ‘

User
Posted 07 Jan 2023 at 15:12
Does he do anything that would explain 3 broken ribs? Ex-rugby player, perhaps, or boxing in his youth? Has he ever been in a car accident or had CPR?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Aug 2023 at 09:33

The nuclear bone scans are very low resolution images. There's a long waiting list for PSMA PET scans. What they might do is a regular X-ray, CT scan, or MRI scan of the affected area.

User
Posted 10 Aug 2023 at 23:27

Thank you Elaine and thank you so much for taking the time to reply. 

Night night 

Mark

User
Posted 22 Aug 2023 at 00:13

Originally Posted by: Online Community Member

Hi Elaine,

yes Gleason score was 9 which isn’t great.

im waiting on a date for the PSMA scan which hopefully won’t be long.

I’ve heard that things get easier when you know what you are dealing with and a plan is in place.

I hope so as you always seem to expect the worst!

We were always told it doesn’t really matter what the Gleason score is as long as they get the whole of the bugger out πŸ‘ 

Rob is also G9 so of course I worry a bit more now he’s had recurrence but hoping we’re getting in early enough with next line treatment 🀞🏼

I know everyone is different but I think it will get easier. I still haven’t got over the situation when he was first diagnosed and not sure I ever will. Even now I don’t feel anywhere close to that thankfully. I thinking when you know more and also have a plan things become a little less scary x

User
Posted 22 Aug 2023 at 11:52
Andy, this is very interesting but doesn't surprise me.

When I had my bone scintigraphy scan, the technician explained that the radioactive dye would be taken up by any areas of fracture, infection, inflammation etc as well as cancer and that any areas identified would have to be researched further as the scan was not definitive. This is in a teaching hospital in France so maybe they treat these differently.

When I got the scans back (in France we get all of our scan documents handed to us and carry them to consultations etc) there were several hot spots - the shoulders, the elbows and spine as well as the bladder.

These were all determined to be perfectly normal for someone of my age who has knackered joints etc and none of them needed any further investigation.

It would somewhat foolish I would suggest if a consultant used a bone scintigraphy to diagnose anything as cancer - it should (and hopefully is) used to identify areas that might need further investigation.

User
Posted 29 Aug 2023 at 20:43

Radiotherapy to the target area is given at the max lifetime dose to give best chance of killing the cancer, which is why you can't have it again. Having said that, radiotherapy doesn't often fail in the target area (although it does occasionally happen). When radiotherapy fails, it's more likely to be because there was some cancer already spread somewhere else which wasn't known about. That can often (but not always) still be treated with radiotherapy if suitable treatment paths can be designed which don't take any tissues over their max lifetime dose, usually using SBRT (narrow high power beams), and if there is only a very small number of mets in specific tissues.

If radiotherapy fails and you get recurrence in the prostate (rare), there may still be curative options. Salvage prostatectomy is done in some specialist centres (such as Guys and St.Thomas's). Increasingly, focal therapy is also considered for this, such as HIFU to target the recurrence.

There has been a little talk of redoing radiotherapy in the same area if the original treatment was many years ago. There is some thought that the tissues recover over time and might handle another high dose after many years, but this isn't part of any standard treatment, and I'm not even aware that it's been trialed anywhere. Trialing it might be a difficult sell, because there's clearly a risk of catastrophic side effects (such as overdosing leaving a large chunk of necrotic tissue which can no longer defend itself from infection), when there are effective non-curative treatments such as life-long hormone therapy.

Edited by member 29 Aug 2023 at 20:46  | Reason: Not specified

User
Posted 31 Aug 2023 at 09:51

Brilliant news Mark, so happy for you.

Best of luck in choosing the path you wish to take, always a difficult decision but can just ‘get on with it’ when it’s made, get the treatment done and get on with living life again with your family.

Hopefully the news will lift the cloud for you also. Hard to believe sometimes but you are one of the lucky ones. Many men will be walking around completely oblivious to having prostate cancer. Yours has been detected early enough and can be treated on a curative pathway πŸ‘

User
Posted 31 Aug 2023 at 10:28

Excellent result Mark.

Dave

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User
Posted 07 Jan 2023 at 12:52

It's never good a PC diagnosis but most off us on hear have been through your anguish caught early it is curable I was psa 24.9  gleeson 9 2 years on after 37 lots of radiotherapy and 2 years on hormone therapy psa now 0.01 and doing ok it is a slow growing desease lots off treatment paths loads on here many many years since diagnosis even those incurable live long lives with treatment stay calm please stop crying and be positive and you will see light at the end of the tunnel keep in touch loads off experience on here to help you through good look with his treatment gaz πŸ‘

User
Posted 07 Jan 2023 at 13:41

Thank you Gaz - did you catch your PC before it spread to the bones? Its just the inconclusive bone report that has me worried - likely to be injury but can't rule out metastases - I was quietly confident of the curative approach before as we thought it was localized, but now feel in limbo. It will literally change the whole approach to his treatment. 

User
Posted 07 Jan 2023 at 14:06

My bone scan was clear but don't panic until you have the full diagnosis you are in good hands the treatment is  excellent they will have a treatment path planned and will give you the choice keep in touch gaz πŸ‘

User
Posted 07 Jan 2023 at 15:12
Does he do anything that would explain 3 broken ribs? Ex-rugby player, perhaps, or boxing in his youth? Has he ever been in a car accident or had CPR?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Jan 2023 at 16:14

Many thanks for your reply, he has had a number of incidents throughout his life - but nothing that relates directly to his ribs - such as a quad bike accident in Dubai, been in a car accident as a teenager, fell into a soakaway when we were having building work done on the house, was a "rough and tumble" kid - but I would of thought any injury from 2+ years ago would have mended on the bone and not be visible now. Plus he has never had a diagnosis of a "broken rib" 

I was hoping that if it had spread if would of gone to his pelvic or spine first or even his lymph nodes/glands, but they haven't mentioned anything there after he had his MRI - thank goodness.


User
Posted 07 Jan 2023 at 16:21

Hi SWB,

have you thought of requesting a PSMA PET scan?

N

User
Posted 07 Jan 2023 at 18:04

Thank you so much! I am looking into this now - this is amazing!

 

User
Posted 07 Jan 2023 at 19:21

Hello Sarah ,

Just read your post and I understand how you feel .I had an inconclusive bone scan in November 2021 and it took a further CT scan and a MRI scan to determine 5 months later it was just an insufficiency fracture caused by the salvage Radio therapy I had undergone earlier that year .Bone scans pick up previous damage to the bones such as fractures and breaks ,arthritis general deterioration and other problems as well as bone cancer .If you read my profile you will get the full picture of my current situation .Prostate cancer that has gone to the bones normally registers in a blood test as a rise in Alkaline Phosphatase (ALP) in my case there was no such rise but there was a hot spot on the scan showing on my pelvis .The doctors had to make sure it wasnt bone cancer hence the other scans they took .I have just had my yearly surveillance scans CT and Bone scan and am awaiting the results this Wednesday .My PSA is undetectable and has been for 30 months so I'm hoping all is ok but its always very stressful waiting to hear as I know I have arthritus and deterioration in my spine and may have another fracture  .So please dont be too worried as quite often bone scans are inconclusive and further investigation is often needed .Also a PSA of under 10 is not considered indicative of definitive bone mets whereas a PSA of over 20 would invite a bone scan in the initial stages .I had locally advanced prostate cancer but the treatment I have recieved has been wonderful, I was diagnosed 7 years ago  there are new treatments coming online all the time and Prostate Cancer can be cured .

User
Posted 08 Jan 2023 at 14:29

Thank you so much - just reading your comment (and those of others) makes me feel so much better. I wish you the best of luck on Wednesday when you get your results - please keep us updated. I am so pleased I found this forum πŸ™  Take care, Sarah

User
Posted 11 Jan 2023 at 12:52

Hi Sarah 

Our nurse has just rung 30 mins  early for a change normally an hour late .All good news psa still undetectable and nothing concerning in scans big sigh of relief no sign of spread and all looking well controlled . I understand how you feel its horrible waiting on scan and test results anxiety  never gets any better. I am thinking of you and hope you are not so worried now keep coming back to this forum it  really is the best for support and advice .Hopefully your OH will be ok the treatments they can offer are all very good these days I am an example of how effective they can be

Best Wishes 

 

 

User
Posted 11 Jan 2023 at 13:59

I honestly can't thank you enough for the update - i had been checking to see if you had posted. 

I am so, so pleased for you. We are going in tomorrow - I am going to push for a PSMA PET Scan if they are still uncertain on whether it has spread or not - I believe there is such a scan at Christie's Manchester, which would be our nearest.

But the waiting, is the worst part, you're definitely correct there. 

Go and celebrate this afternoon! What fantastic news!

Best Wishes 
Sarah  

User
Posted 11 Jan 2023 at 15:14

Thank you for you good wishes. Remember you  and your OH are your own best advocates ask lots of questions and push hard for what you want in the way of treatment. Unfortunately as I have found over the  seven years of my treatment the NHS is not very forthcoming with information unless you specifically ask for it and you need to know the  right questions to ask .Good luck tomorrow i will be thinking of you .Keep us up to date with how things go .

User
Posted 11 Jan 2023 at 16:56
Sarah, Sorry to hear about your other half's diagnosis. I am a bit older than him, and was diagnosed early last year and had my surgery 7months ago. Like him, there is no known history of PCa in my family. Whilst I accept this is a forum one would not rather not be a member of, however the folks here have been nothing short of amazing and I have found answers here to a lot of my concerns and been able to get on with it.
User
Posted 11 Jan 2023 at 20:58

Hi Sarah,

When my husband was diagnosed the MRI picked up something on his pelvic bone, he had a bone scan and we were told it came back positive for cancer. We went for a private second opinion and they disagreed but just to be sure he had the PSMA pet scan and that confirmed it wasn’t in his bones. It was in 1 lymph node but he was still able to have RARP and removal of 14 lymph nodes. 12 months since op and so far so good….we know that can change at anytime but just getting on with life for now.

We are close to the Christie and believe they do have the PSMA pet scan, Rob ended up having his in London as that’s where we went for second opinion.

I’m sure everything will be ok, but I can understand your worry as at this point, I was a complete wreck!! Things do get easier though when you know where you are.

Best wishes

Elaine

User
Posted 09 Aug 2023 at 05:52

Hi Elaine,

I have had an MRI and the report said suspicious area on pelvis and sacrum. 
didn’t say it was cancer. 
I think it maybe worth getting a second opinion as I’ve just had a bone scan too and waiting on results.

I’ve looked at the Christie and will get in touch with them.

any other information is gratefully appreciated 

I hope your situation is all good 

marky1

User
Posted 09 Aug 2023 at 07:57

Hi Marky1,

Hope you’re ok, I know it’s such a worry waiting for these results.

I guess see what the bone scan says, and for me it’s always worth getting another opinion as it can massively change treatment options. Do you live in the Manchester area? The only thing I would say is, initially we got a private second opinion locally, but because he was within the same MDT group as our consultant he was reluctant to have another opinion even though he thought it was very strange and wouldn’t have expected a bone met.  So we ended up in London and that’s when things changed.

My husbands PSA has risen above 0.2 now so he’s having more treatment.  We are under Christie’s and they are now happy after another recent PSMA pet scan that it’s not bone mets and suspect micro mets in pelvic area as the scan was clear.

Best of luck with your results and keep in touch.

Elaine

User
Posted 09 Aug 2023 at 08:19

Thank Elaine,

no I’m in the midlands but I have read that the Christie is a centre of excellence.

I’ll travel anywhere to get the best care.

where did Rob get his PSMA PET scan done?

I have found the nhs not very informative upto now. 
I am not sure what they will do next to confirm any cancer with the MRI saying suspicious area on my pelvis and sacrum. What more tests can they do?

thanks for your reply

Mark

 

 

User
Posted 09 Aug 2023 at 08:30

Yes, the Christie is a centre of excellence and we are lucky to have it on our doorstep. Just best to get another opinion out of your area which Christie’s will be for you.  Rob had his done through The Royal Marsden, as I found a consultant based there.

If the bone scan comes back inconclusive then you may well be offered a PSMA pet scan on the NHS, which of course is always better than having to pay for one yourself as they are expensive.

I think someone else posted on this thread that they had a CT scan after an inconclusive bone scan.

Have you got an appointment for when you will get the bone scan results?  Hopefully you won’t be waiting too long.

Elaine

User
Posted 09 Aug 2023 at 09:33

The nuclear bone scans are very low resolution images. There's a long waiting list for PSMA PET scans. What they might do is a regular X-ray, CT scan, or MRI scan of the affected area.

User
Posted 09 Aug 2023 at 09:38

Originally Posted by: Online Community Member

The nuclear bone scans are very low resolution images. There's a long waiting list for PSMA PET scans. What they might do is a regular X-ray, CT scan, or MRI scan of the affected area.

 

I think we were very fortunate Andy that we were offered a PSMA pet scan within 5 days, we couldn’t get home (from France) quick enough for that so it was 8 days but I know others have had to wait much longer.

User
Posted 10 Aug 2023 at 20:34

Hi Elaine,

sorry to trouble you again. When Rob had his mri scan what did it say about the pelvis.

mine has said it is suspicious which I think they think it’s metastasised. 

my bone scan has come back clear which is positive but I know the mri is a better at spotting it.

Mark

User
Posted 10 Aug 2023 at 22:45

Originally Posted by: Online Community Member

Hi Elaine,

sorry to trouble you again. When Rob had his mri scan what did it say about the pelvis.

mine has said it is suspicious which I think they think it’s metastasised. 

my bone scan has come back clear which is positive but I know the mri is a better at spotting it.

Mark

 

Hi Mark,

Never a bother ☺️

It was the same for Rob that the MRI showed a suspicious area in his pelvis.  The bone scan after being reviewed by MDT came back positive though (as in confirmed cancer).

We ended up getting a second opinion, not really because we didn’t believe them….it was just that regardless, Rob wanted to have the op to remove his prostate and then deal with the rest later, and we hoped to find a surgeon that would do it.  All his scans went to a second MDT in London and they didn’t agree about the bone scan.  We then paid for a PSMA pet scan to confirm and that didn’t show up cancer in pelvis either. 

Great news that your bone scan has come back clear.  I think it’s normal to think ‘can this really be the case’.  I still sometimes wonder was the original diagnosis correct but a bit too scared to let robs PSA rise too much to find out. 

Do you know what your options are now? 
Elaine

User
Posted 10 Aug 2023 at 23:03

Not yet, seeing a consultant on Monday but May still be waiting on biopsy results.

that is exactly what i want, the prostate out and to deal with anything else separately but not sure anyone will do it even if I pay!

I'm hoping they have got it wrong on the suspicious areas!!

User
Posted 10 Aug 2023 at 23:19

Originally Posted by: Online Community Member

Not yet, seeing a consultant on Monday but May still be waiting on biopsy results.

that is exactly what i want, the prostate out and to deal with anything else separately but not sure anyone will do it even if I pay!

I'm hoping they have got it wrong on the suspicious areas!!

 

Ah ok you haven’t had biopsy results yet? 

I would think if your bone scan is clear and they’re not concerned about it being outside the prostate then you should be fine for the op if that’s what you wanted.  I’m guessing without the biopsy results they haven’t even confirmed prostate cancer yet?

If there really is still suspicion about the bone then I would imagine they would send you for a PSMA pet scan.

Good luck for Monday and keep us posted.

User
Posted 10 Aug 2023 at 23:27

Thank you Elaine and thank you so much for taking the time to reply. 

Night night 

Mark

User
Posted 21 Aug 2023 at 10:47

Hi Elaine,

had my results back from my bone scan and they were clear so no bone mets with those scans.

they want to do a PSMA scan now to confirm as spread elsewhere. MRI suggested some in seminal vesicles but no where else.

biopsy showed C only on right hand side. I had 24 bores with 8 positive.

If the PSMS is clear I’m hoping for a Prostatecomy. Alternatively RH. 
I am just hoping no bone mets are found. 
The waiting is so difficult.

I was so pleased last Thursday when I had the bone scan results now they want the PSMA scan.

How are you and Rob doing?

best wishes 

mark 

User
Posted 21 Aug 2023 at 12:41

Great news Mark.

I think it’s worth having the PSMA scan if they’re offering then atleast you know exactly (not sure anything is ever exact really πŸ˜‚) what you’re dealing with.

Did you get a Gleason score from your biopsy??

Hopefully not too much longer for you to wait, I know it’s just the worst part. Have you had a date for PSMA scan yet? 

We’re ok thanks. Rob has started his HT and so far he seems fine 🀞🏼 We’ve been walking quite a bit and getting in the gym to try to fight of the weight gain he may get but also trying to strengthen his muscles and bones. I still worry about every ache and cough but not sure that will ever change 🀷🏻‍♀️

Good luck with the PSMA when you get it.

Elaine

User
Posted 21 Aug 2023 at 17:48

Hi Elaine,

yes Gleason score was 9 which isn’t great.

im waiting on a date for the PSMA scan which hopefully won’t be long.

I’ve heard that things get easier when you know what you are dealing with and a plan is in place.

I hope so as you always seem to expect the worst!

Glad Rob is getting on well..

Will keep you updated.. hope that’s ok.

beat wishes

Mark 

User
Posted 21 Aug 2023 at 19:07
Mark

I would definitely push for the RARP - although my biopsy was Gleason 3+4=7, after the surgery it was confirmed as T3b Gleason 4+5=9 however although the RARP was non-nerve sparing it was still successful based on the post surgery PSA being <0.01

So basically they were able to operate with success on a G9 T3b even if they were not aware of it before they started.

User
Posted 22 Aug 2023 at 00:13

Originally Posted by: Online Community Member

Hi Elaine,

yes Gleason score was 9 which isn’t great.

im waiting on a date for the PSMA scan which hopefully won’t be long.

I’ve heard that things get easier when you know what you are dealing with and a plan is in place.

I hope so as you always seem to expect the worst!

We were always told it doesn’t really matter what the Gleason score is as long as they get the whole of the bugger out πŸ‘ 

Rob is also G9 so of course I worry a bit more now he’s had recurrence but hoping we’re getting in early enough with next line treatment 🀞🏼

I know everyone is different but I think it will get easier. I still haven’t got over the situation when he was first diagnosed and not sure I ever will. Even now I don’t feel anywhere close to that thankfully. I thinking when you know more and also have a plan things become a little less scary x

User
Posted 22 Aug 2023 at 11:21

SWB hasn't returned since January, so we'll probably never know if partner got a PSMA PET scan.

However, this report was just published, which suggests that the traditional nuclear bone scan may be generating a significant number of false positives, causing men to be misdiagnosed with advanced disease which is in fact not advanced.

As it goes on to mention, if this is the case, it might also explain why treating men with low metastatic burden with radiotherapy was shown to be successful - some might not actually have been metastatic at all.

Do Bone Scans Overstage Disease Compared with PSMA PET at Initial Staging?

Conclusion: In this multicenter retrospective study, the PPV of bone scans was low in patients at initial staging, with 57% of positive bone scans being false positives. This suggests that a large proportion of patients considered low-volume metastatic by the bone scan actually had localized disease, which is critical when applying clinical data from trials such as the STAMPEDE M1 radiation therapy trial to patients being staged with PSMA PET.

User
Posted 22 Aug 2023 at 11:28

Really interesting Andy. This is of course what happened to my husband. I guess it must come down sometimes to how it is read als, as one MDT said positive for bone met and another disagreed.

User
Posted 22 Aug 2023 at 11:52
Andy, this is very interesting but doesn't surprise me.

When I had my bone scintigraphy scan, the technician explained that the radioactive dye would be taken up by any areas of fracture, infection, inflammation etc as well as cancer and that any areas identified would have to be researched further as the scan was not definitive. This is in a teaching hospital in France so maybe they treat these differently.

When I got the scans back (in France we get all of our scan documents handed to us and carry them to consultations etc) there were several hot spots - the shoulders, the elbows and spine as well as the bladder.

These were all determined to be perfectly normal for someone of my age who has knackered joints etc and none of them needed any further investigation.

It would somewhat foolish I would suggest if a consultant used a bone scintigraphy to diagnose anything as cancer - it should (and hopefully is) used to identify areas that might need further investigation.

User
Posted 22 Aug 2023 at 19:41

Thanks for the message Steve.

I am just waiting for a PSMA pet scan to confirm there are no bone mets before they can do the op.

it’s just a worry all the time, it consumes you completely and never leaves you alone.. My wife and I are absolutely exhausted with all the worry. 
it’s great to hear a positive story like yours though with a low PSA post op!

thanks again Steve.

keep well 

Mark

User
Posted 29 Aug 2023 at 19:35

Hi Elaine,

I am still waiting for my PSMA scan results but have just seen an oncologist to compare RT with RP.

I was shocked when he told me that he can only give one lot of radicle RT and if it doesn’t work that’s that’s it. Even if the have an RP and need SRT you only get one shot at it to get rid of it.

is this what you have been told?

He said it’s because it a high dose and you would need to wait 5/6 years so the area can recover before more is given.

it’s so tough waiting for these results I just have a feeling it has metastasised and I won’t be able to have a RP.

How is Rob doing?

Hope you are ok too.

Mark 

User
Posted 29 Aug 2023 at 20:43

Radiotherapy to the target area is given at the max lifetime dose to give best chance of killing the cancer, which is why you can't have it again. Having said that, radiotherapy doesn't often fail in the target area (although it does occasionally happen). When radiotherapy fails, it's more likely to be because there was some cancer already spread somewhere else which wasn't known about. That can often (but not always) still be treated with radiotherapy if suitable treatment paths can be designed which don't take any tissues over their max lifetime dose, usually using SBRT (narrow high power beams), and if there is only a very small number of mets in specific tissues.

If radiotherapy fails and you get recurrence in the prostate (rare), there may still be curative options. Salvage prostatectomy is done in some specialist centres (such as Guys and St.Thomas's). Increasingly, focal therapy is also considered for this, such as HIFU to target the recurrence.

There has been a little talk of redoing radiotherapy in the same area if the original treatment was many years ago. There is some thought that the tissues recover over time and might handle another high dose after many years, but this isn't part of any standard treatment, and I'm not even aware that it's been trialed anywhere. Trialing it might be a difficult sell, because there's clearly a risk of catastrophic side effects (such as overdosing leaving a large chunk of necrotic tissue which can no longer defend itself from infection), when there are effective non-curative treatments such as life-long hormone therapy.

Edited by member 29 Aug 2023 at 20:46  | Reason: Not specified

User
Posted 30 Aug 2023 at 11:36

Originally Posted by: Online Community Member

I was shocked when he told me that he can only give one lot of radicle RT and if it doesn’t work that’s that’s it. Even if the have an RP and need SRT you only get one shot at it to get rid of it.

is this what you have been told?

He said it’s because it a high dose and you would need to wait 5/6 years so the area can recover before more is given.

it’s so tough waiting for these results I just have a feeling it has metastasised and I won’t be able to have a RP.

How is Rob doing?

Hope you are ok too.

Mark 

 

Hi Mark,

Yes we know that it’s pretty much one time to his whole pelvic area. If it is found later in other areas though then there would still be an option of more targeted RT treatments (hoping they will get it all this time though 🀞🏼)

Mark it is the worst waiting for these results, and the fact you feel it has metastasised I think is a common approach. I was exactly the same and assumed Rob was head to toe almost in cancer….every ache or pain I assumed must be cancer (still do sometimes 🀦🏻‍♀️). Your bone scan was clear though so that’s really positive. I sometimes think if I imagine the absolute worst it surely can’t be as bad as that 🀷🏻‍β™€οΈπŸ˜‚

I’m sure all will be better than you think and you will have plenty of options. Have you got a planned appointment for the results or just waiting for them to get in touch?

Rob seems ok at the moment thanks on his HT, I’m waiting for the side effects to kick in 🀦🏻‍♀️ trying our best with food, exercise and making sure he doesn’t get down to stave off as much as we can πŸ‘

Hope you get your results very soon x

User
Posted 30 Aug 2023 at 22:49
Hi Elaine,

Thanks for the reply.

Yes I’m always thinking the worst and makes me worry even more! Yes every ache and pain is a nightmare.

Like you say if you expect the worst anything else is a bonus!

No appointment with my local oncologist yet but I have got one booked at the Christie for next Tuesday to get a second opinion. Glad Rob is doing well.. did he have SRT before the HT?

My oncologist said that it is difficult to have SRT after a RP as it is a double whammy of side effects..

Thanks again for the reply.. always so nice when someone takes the time to reply.

Take care both

Mark x

User
Posted 30 Aug 2023 at 23:37

Rob hasn’t had his SRT yet, he has his planning scan in October and then we should get the dates. We’ll just have to see how he goes, he was very fortunate that he has felt pretty well throughout and even around the operation. His side effects have not been too bad, he does have ED now but in fairness, apart from him using the pump for a while he hasn’t had any medication to help, so it may well have improved more if he had. 

The way you are feeling at this stage I think is understandable and I’m sure most have gone through this. I was having one to one counselling at my local cancer centre at the start. I used to wake up with a dark cloud hanging over me and wonder whether I would ever even smile again. Things completely changed when we knew what we were dealing with (even though we didn’t get the best news). Still had up and down days but nothing like in the beginning. Don’t be hard on yourself for how you are feeling and get whatever help and support you feel you need.

Hopefully you’ll have your scan results before your trip to Christie’s. Are you going to the main one in Manchester? 

Take care and best of luck for next week x

 

User
Posted 31 Aug 2023 at 09:03
Morning..

Yes we have an appointment at the private hospital there on Tuesday.

I hope the PSMA results are back by then.

It’s just so unfair, life was just going along nicely before all this.

I’m just afraid I’m going to leave my family too soon as my son is only 8 and he needs his Dad.

I’m praying that there is no further spread anywhere.

I’ll keep you updated

Thanks Elaine

Mark x

User
Posted 31 Aug 2023 at 09:38
Hi Elaine,

Just had an email saying disease hasn’t metastasised anywhere so still on for curative treatment.

I’m so relieved.

Now to decide on treatment..

thanks for your support

Mark x

User
Posted 31 Aug 2023 at 09:51

Brilliant news Mark, so happy for you.

Best of luck in choosing the path you wish to take, always a difficult decision but can just ‘get on with it’ when it’s made, get the treatment done and get on with living life again with your family.

Hopefully the news will lift the cloud for you also. Hard to believe sometimes but you are one of the lucky ones. Many men will be walking around completely oblivious to having prostate cancer. Yours has been detected early enough and can be treated on a curative pathway πŸ‘

User
Posted 31 Aug 2023 at 10:28

Excellent result Mark.

Dave

User
Posted 31 Aug 2023 at 11:17
Thanks both.. I feel like I’ve won already but I know there’s a long way to go..

Now just to choose a treatment path.

Will keep the feed updated..

Keep well both

Mark xx

 
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