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New to Forum, advice welcomed

User
Posted 15 Aug 2023 at 16:51

Good Afternoon All,

First time posting on this website, which is a fabulous source of information including from the discussion forum.

I’m 61 yrs old living in Shrewsbury.

In June this year I was confirmed to have prostate cancer - I had a high PSA of 111, with a later result of 87, and had MRI, bone and PET scans and biopsy procedure.

It is an adenocarcinoma grade group 5 , Tumour is T3a (T3 N0 M0), described as a high grade prostate cancer but with no obvious capsule extension enlargement of nodes or involvement of the seminal vessels.

Have been started on hormone treatment (been on for 5 weeks now) and this will be followed by radiotherapy.

I arranged a second opinion and the consultant was also of the view that this is the appropriate treatment path, and noted that I should discuss with the oncologist the option to also have a PSMA PET scan (NB I have not yet met up with the oncology team) ie to check for localised spread outside the prostate eg small lymph node. He thought it likely that I will be offered high dose brachytherapy with external beam. He also recommended Adcal which I am now on.

Surgery not considered appropriate given high PSA, nature of cancer, size of tumour etc.

Speaking to my urology nurse she noted that in this area (Shrewsbury/ W Midlands) the radiotherapy is typically 6 months after starting hormone treatment. I asked about likely type of radiotherapy and she advised it would be probably just external beam as my PSA etc means high dose brachytherapy not likely to be appropriate.

I would be interested to hear any thoughts/ advice on the following questions:

  1. Is 6 months pretty typical between starting hormone treatment and the radiotherapy sessions?
  2. Any thoughts on the treatment plan proposed based on your experiences?
  3. I’m considering whether there is value in getting referred to the Christie in Manchester or similar (I.e a highly specialised treatment centre) including the use of protective methods with protect the bowel and rectum etc during radiotherapy - obviously it would be good to have the best protection in place!
  4. Does anyone have recommendations about prostate cancer oncology specialists in Manchester, Birmingham - I hear that London has excellent prostate cancer provisions too.

Any advice would be welcome, and I’m sure I will have other questions on this new journey.

Best Regards

Andy

User
Posted 17 Aug 2023 at 14:41

Hello Ohwow,

Thanks very much for your post, and hope the post-biopsy pain disappears soon, its quite an intrusive process!

I will post progress as things go forward, and will be interested to hear how things go with you.

Best of Luck.

Kind Regards

Andy

User
Posted 18 Aug 2023 at 20:03

Hi everyone,

I’ve been diagnosed with PC recently and and concerned that it may have gone to my bones. 
An MRI revealed possible bone mets in pelvis and lumbar spine but then the bone scan was clear.

My oncologist said the radiographer said no bone mets but have suggested a PSMA PET scan. 
So in anticipation of bad news I’m checking out treatment option for bone mets..
All this is pretty scary and I’m still in shock about the diagnosis!! 
Mark 

User
Posted 18 Aug 2023 at 22:12

Hi Mark,

I doubt anybody on here is any braver than you are. This comes as a terrible shock to ALL of us, even more so if you are younger. Once you get your full diagnosis you will hopefully be able to come to terms with all this and a plan put in place. Once you have your plan things will get easier for you. In the meantime you really sound as though you need some emotional support so please don’t suffer in silence….go and speak to someone, your GP, CNS, Maggies or one of the Specialist Nurses on PCUK, who are really good.
Try and keep as active as possible and be kind to yourself, treat yourself and do things that make you smile.

All the best,

Derek

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User
Posted 15 Aug 2023 at 18:43

Hi Andy b,

Click on my profile picture and then view profile to see my diagnosis and treatment. Was the drop from 111 to 87 caused by HT or did it just drop on its own accord?

A six month wait is very common between starting HT and Radiotherapy.

I had HDR brachy and a little EBRT. Maybe for you they want more dose outside the prostate in case it has spread, so plenty of EBRT and no brachy may be the better option for you.

A spacer will move your rectum away from the prostate so it won't get as much radiation, but that may not be a good idea, you may have prostate cancer cells on the rectum and you will want them to get blasted. Somethings are not as obvious as they first seem.

I was treated at the Christie, I can see some value in you getting a second opinion on HDR brachy from them. If you have to go there daily for EBRT it would be a problem for you.

 

Dave

User
Posted 16 Aug 2023 at 17:56

Hi Dave, 

Many thanks for your response, that was very helpful - my PSA had dropped from 111 to 87 before hormone treatment, I guess still in a similar ballpark. 

How did you find your experience at the Christie has been? Fortunately my daughter lives in Manchester so the back and forth should be ok. I also spoke to one of the Prostate Cancer specialist nurses who was very knowledgeable and empathetic, and provided thoughtful support.

I will take a look at your profile and treatment, thank you for your note below.

Best regards

Andy

User
Posted 16 Aug 2023 at 22:40

I too come under Shrewsbury, and was recently diagnosed as T2 N0 M0 in July after a Transperineal.

Still waiting for the 1st face-to-face appointment, which finally came through today as end of September.
I dont know if the waiting time has been down to a T2 or other factors such as the strikes. Appreciate there will be many others with far more urgency.
But nothing like keeping you on a cliff edge of worry.

I still have pain down there somewhere after the biopsy, although cant quite pinpoint it. Like a dull ache inside and sitting down for long periods makes it worse.

Edited by member 16 Aug 2023 at 22:46  | Reason: Not specified

User
Posted 16 Aug 2023 at 23:12
Andy B PSMA in your situation would be highly informative and could change your treatment.

User
Posted 17 Aug 2023 at 00:36

I also had external beam plus HDR brachy - this combination is called HDR Boost. It's suitable for high risk patients up to T3bN0M0 (I was T3aN0M0). It's a good combination of hitting the prostate hard with a higher effective treatment dose than can be delivered using external beam alone, providing a lower prophylactic dose outside the prostate to mop up micro-mets (mets too small to show on scans), and not too bad side effects (almost nothing for me 4 years later, but there are no guarantees, as with all treatments). What's covered by the external beam can be varied a bit. It will always be prostate and I suspect seminal vesicles too. It can also include pelvic lymph nodes, i.e. the locations where the cancer is likely to spread next, just in case it has already started. I chose to have my pelvic lymph nodes included (sometimes called Whole Pelvis by prostate oncologists, although that means something completely different to radiographers). So far, I'm very pleased with the treatment.

The period on hormone therapy before treatment (called Neoadjuvant Hormone Therapy) is usually 3-6 months. My hospital usually does 3 months, but I wanted to get my PSA lower before starting the radiotherapy, and pushed it out to 5 months. My onco was fine with delaying up to 6 months, providing my PSA was still dropping significantly - he didn't want me to delay if PSA decline was bottoming out, or worse still, starting to rise again. There are various papers suggesting getting the PSA down to 1 or 0.1 (different papers) before starting RT can give better outcomes, or less time needed on HT afterwards. However, not everyone's PSA will drop that low. In the UK, PSA often isn't measured while on Neoadjuvant Hormone Therapy, so if you want to play these games, you would need to ask for extra PSA tests.

There are some problems with PSMA PET scan.
There's currently something like a 7 week waiting list in many areas. This would delay your treatment, which might not be wise with a Grade Group 5.
You already started HT which makes the test less sensitive.
What if it finds something away from the prostate? They might not offer RT, because the RT might be pointless if there are lots of mets. If you did have one or two mets away from the prostate and they are only found after your primary treatment, they might offer to treat them at that point, but if found before your primary treatment, that's not normally offered. So you might want to consider just how hard you really want them to look look away from the prostate at this stage - it's a double edged sword.

 

Edited by member 17 Aug 2023 at 06:47  | Reason: Not specified

User
Posted 17 Aug 2023 at 00:50

Hi Andy,

I've only ever spent one night in a hospital and that was at the Christie for the HDR. I can't say I enjoyed it but I'm sure it was no better or worse than any other hospital. I then had 15 fractions of EBRT. It all worked efficiently and staff are pleasant. 

I don't know how many hospitals in the UK can do HDR. The benefit to you of getting an opinion from the Christie is that being a specialist cancer hospital they are going to be able to pick your treatment from a bigger menu, than a more general hospital.

My PSA dropped from 29 to 25 to 21 over the two week period to diagnosis. I suspect I had a prostate infection which caused urinary retention which is what caused me to be investigated for cancer. I am curious to know if the PSA would have carried on dropping and leveled off at a lower figure. Still the biopsy was G9 in 95% of the prostate, so it is as well that I was investigated.

We have had someone with a PSA of 80 but no cancer. Though in most people a PSA of over 100 often is associated with spread, it is not always; as it was falling you are probably in a better situation than it would first appear.

 

Dave

User
Posted 17 Aug 2023 at 14:30

Many thanks for your perspective, much appreciated.

Best wishes 

Andy

User
Posted 17 Aug 2023 at 14:37

Hi Andy62,

Many thanks for your highly informative post, its incredibly helpful to get this sort of perspective.

I will plan to discuss the various aspects with my oncologist when we do meet. I do see the 'double edge sword' issue with the PMSA PET scan, definitely an issue to investigate thoughtfully further.

Very happy to hear the news that your present treatment is going well.

Best regards

Andy

 

 

User
Posted 17 Aug 2023 at 14:41

Hello Ohwow,

Thanks very much for your post, and hope the post-biopsy pain disappears soon, its quite an intrusive process!

I will post progress as things go forward, and will be interested to hear how things go with you.

Best of Luck.

Kind Regards

Andy

User
Posted 17 Aug 2023 at 14:44

Hi Dave,

Many thanks for the further update. I'm going to explore whether a referral to the Christie will make sense for me - will do my research and keep you updated as things progress.

Best regards

Andy

User
Posted 17 Aug 2023 at 23:28

Thanks Andy, much appreciated. We have a mutual interest in seeing how treatment progresses in Shrewsbury. I hadn't realised about Manchester until you mentioned it, and then did some further research.

Have to say, past few days my rear has felt like its burning in addition to groin pain, that's 4 weeks on from biopsy.
Kind of concerning so might have to contact the Urology dept and see what they think. Its near on impossible getting a GP appointment where I live and I'm not one to add to the A&E chaos for no real emergency.

 

Update: finally got a GP slot. Urine test clear, but advised likely Prostatitis. Had a chat with CNS at Shrewsbury, she advised give it some time as only 4 weeks since biopsy.

Edited by member 19 Aug 2023 at 00:01  | Reason: Not specified

User
Posted 18 Aug 2023 at 08:09

Hi Ohwow,

Yes let's keep in touch. I would certainly think it important to follow up today on the pain/ burning sensation that you are feeling, I have found it very easy to connect to one of the specialist nurses on this website and in my experience they are very well informed and supportive, the number to contact is on well signposted on this website - they should be able to advise you. Would also think it very worthwhile trying hard with your GP and saying you need an urgent appointment, that hopefully will get you a quick appointment. 

Good Luck and no doubt will contact soon.

Best wishes

Andy

User
Posted 18 Aug 2023 at 20:03

Hi everyone,

I’ve been diagnosed with PC recently and and concerned that it may have gone to my bones. 
An MRI revealed possible bone mets in pelvis and lumbar spine but then the bone scan was clear.

My oncologist said the radiographer said no bone mets but have suggested a PSMA PET scan. 
So in anticipation of bad news I’m checking out treatment option for bone mets..
All this is pretty scary and I’m still in shock about the diagnosis!! 
Mark 

User
Posted 18 Aug 2023 at 20:11

You all seem So brave on here.

Im 55 with a young son and I’m so so scared for the future 

User
Posted 18 Aug 2023 at 22:12

Hi Mark,

I doubt anybody on here is any braver than you are. This comes as a terrible shock to ALL of us, even more so if you are younger. Once you get your full diagnosis you will hopefully be able to come to terms with all this and a plan put in place. Once you have your plan things will get easier for you. In the meantime you really sound as though you need some emotional support so please don’t suffer in silence….go and speak to someone, your GP, CNS, Maggies or one of the Specialist Nurses on PCUK, who are really good.
Try and keep as active as possible and be kind to yourself, treat yourself and do things that make you smile.

All the best,

Derek

User
Posted 19 Aug 2023 at 08:00

Hi Derek, 

thank you so much for the message.

it’s a very scary time. My staging was the same as yours but they want me to have a PSMA PET scan to check there are no bone mets even though other scans revealed there wasn’t any. I know this is probably sensible as it could change the treatment path but it’s just worrying.

I am lucky that I have a lot of support around me but i do just feel very alone with this battle which I still quite can’t believe I am in. 
I will try the support groups you mentioned to hopefully help me with the anxiety.

please keep in touch

best wishes

mark 

 
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