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Tumour flare

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User

Posted 16 Sep 2017 at 10:37

Hello All,

It all started with sciatica then peeing troubles (or even slightly earlier ED perhaps), then groin pain earlier this year. I had gone to GPs about ED and sciatica, but went about peeing issues in June...PSA 12, poor DRE, MRI very bad, bone scan confirmed.

I was diagnosed formally on 24/08/17 with Metastatic/Advanced PCa, T4 N0 M1, Gleason 5+4, metastases to pelvic bones etc., Pi-rads 5. Lower urinary tracts issues, bone pain in groIn, legs, posterior pelvic bones, back. Described as a highly aggressive adenocarcinoma. I had elected for transperineal biopsy due to pre-existing gut issues.

HT started. Seeing oncology on 27th. September.

Two weeks of Bicalutamide was helpful, but a after a one month Prostap injection on 07/09/17 pain has just reverted or even worse. I only have a few days of Bicalutamide remaining. Emailed clinical nurse specialist(s) but no reply. I was told tumour flare happens but thought the bicalutamide was to prevent it. Did this happen to others and for how long. Any advice or expereinces would be much appreciated. Thank you.

Michael

Edited by member 16 Sep 2017 at 22:21 | Reason: Not specified

User

Posted 20 Sep 2017 at 19:08

Hi Michael,

My heart is always drawn to people seeking pain management advice wether it is the start of someone's journey or the end pain not managed is unacceptable.

Bang on every door and shout really loud until you are heard ,

I had a really idealised view of what being a cancer patient would be like , we have all seen the adds " We will be there for you " and maybe for some / most that is true but sadly not always . Bang that drum really loud and don't stop until you get noticed.

Trevor's pain at the moment is well managed but it has often been hit and miss sometimes it takes a few days to get the right combination , please don't worry that getting stronger meds means it's all down hill or that they wouldn't work in the future . Trevor has taken pretty much everything and is now on 4 hourly paracetamol and slow release morphine twice daily .

Just realised that I didn't give the upside to Trevor's story so here is the upside .

Diagnosed 05/14

PSA 13000

Mets in whole torso

Still here over 4 years later yes it's been a roller coaster but still driving and mobile , doing jobs around the home and being a dad to our two boys .

Please show this to your wife.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 16 Sep 2017 at 14:00

Hi, bicalutimide can reduce tumour flare but cannot always prevent it completely. The cancer may also be complaining (loudly) as it starts to realise it is being starved and fights against this. Hopefully it will settle down very soon but in the meantime, take all your painkillers properly - there is no glory in trying to get by without them and the sooner you get the pain under control the sooner your body will take over again.

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

User

Posted 16 Sep 2017 at 21:45

Having looked at your profile, sugets that you contact PCaSO which is a great organisation, they cover everyone in the south and give great support. Tumour flare is scary and very painful, no doubt your oncologist will recommend pain management and in the meantime you could get in touch with st Wilfred's hospice to give advice

Good luck

Edited by member 16 Sep 2017 at 21:47 | Reason: Not specified

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User

Posted 16 Sep 2017 at 14:00

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

User

Posted 16 Sep 2017 at 21:45

Good luck

Edited by member 16 Sep 2017 at 21:47 | Reason: Not specified

User

Posted 19 Sep 2017 at 00:06

Thank you very much indeed for your replies. I am taking paracetamol (big change for me) and have Tramadol and Naproxen. I was offered patches and other stufff but declined for the moment. I know how this ends, and I suppose starting chronic pain medication feels a bit too much like the beginning of the end. So that's going to be a difficult adjustment.
I saw GP and got more Bicalutamide (this had seemed helpful prior to the Prostap jab) as it was only prescribed for 4 weeks around the injection, and I want to continue it until I see Oncology next week (Dr. K from Q.A. Portsmouth [Doctors name edited by Moderator]). No reply from Nurse Specialists.
It's all new, bewildering and is very sudden going directly to advanced disease. Deterioration had been so quick. I asked about St. Wilfred's, and GP talked about how helpful their alternative therapies are etc, but then didn't refer me. So while they are not even telling me I've got 12 months (hospice referral criteria) they aren't helping any. I've been given a folder full of stuff (which I have little enthusiasm to study), and it has about all the available support from Macmillan, PCaUK, Cancerwise etc. but in practice I don't know where I can go.
I had looked at PCaSO and only saw a quarterly meeting which didn't seem much use.
Wife is not coping well. She's not sleeping or eating much, has seen GP and gone off work which I think is the worst possible thing for her.

Edited by moderator 19 Sep 2017 at 01:19 | Reason: Not specified

User

Posted 20 Sep 2017 at 19:08

Hi Michael,

My heart is always drawn to people seeking pain management advice wether it is the start of someone's journey or the end pain not managed is unacceptable.

Bang on every door and shout really loud until you are heard ,

Just realised that I didn't give the upside to Trevor's story so here is the upside .

Diagnosed 05/14

PSA 13000

Mets in whole torso

Still here over 4 years later yes it's been a roller coaster but still driving and mobile , doing jobs around the home and being a dad to our two boys .

Please show this to your wife.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 25 Sep 2017 at 22:47

Thank you for your advice. So I disregarded the rather useless GP, and visited the hospice to enquire. I actually saw a lovely triage CNS, who thought I looked tired and in too much pain. She said they could help and took my visit as a self-referral. They called the very next day to say they had the necessary medical information, and would send the CNS for my locale. We also visited Cancerwise and received a positive and supportive reception. The Macmillan support worker at the hospital now calls me on Fridays, and she is very helpful. So that is all good.

I eventually got a reply from the Urology CNS after 10 days. She did not think it was tumour flare. I still think that was going on, but it's been over two weeks now, so I expect that brief honeymoon period when initially on Bicalutamide isn't coming back.:( It was nice while it lasted though.

Michael

User

Posted 08 Mar 2020 at 12:07

Thank you so much for this story similar to mine. It has given me hope. Keith

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