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The start of another cancer journey?

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User
Posted 26 Aug 2019 at 23:00

First post here, never thought It would be quite so soon that I have to reacdh out for support again.  I was diagnised with a rare form of Leukeamia in 2012, for which there is no cure and for which I am on life long chemotherapy.  I'm in managed remission on chemo, but its still a heavy bag to carry and I'm managing the side effects well.  When I was first diagnised I had tests up the yingyang, MRI, CT, bone scans - you name it - I was zapped.  At the time of my diagnosis the oncologist remarked that my prostate seemed a little enlarged, but that was the least of my worries at the time!


In Aug 2018, I decided that a cholestral test and PSA check would be sensible. No real symptoms, other than a mildly reduced flow.  PSA came back as 4.0, and was advised to retest in 6 months, which I duely did.   April 2019 it had risen to 4.3, tested again in June it had risen to 4.7; DRE suggested smooth but mildly enlarged prostate and was immediately refered to a urologist.  


A surprising quick referal, another DRE, followed by an MRI about 10 days ago.  A letter arrived today asking me to go for a TRUS biopsy on Friday as the MRI showed 'some ares in the prosate that require a biopsy'.  Not very informative, but a least the conveyer belt appears to be moving at speed.  So here I am, doing my research, wondering if I'm about to start my second cancer journey?

User
Posted 27 Aug 2019 at 02:05

Hello Brian,


Sorry you're sitting there worrying about this, and on top of your existing cancer. Until the biopsy is done, no one can say if you have PCa or not. An MRI scan can identify areas which need checking, but it cannot tell if they are cancer or not, so you're just going to have to wait for the biopsy. Do you know what your PIRADS score from the MRI was (a number in the range 3-5)? Because you were being closely monitored, and your PSA doubling time is still very long (approx 5 years) it's likely that you've been caught quite early if it is PCa.


Hospitals vary, but typically you will wait about 3 weeks from the biopsy until you get the result, so it's a bit of a waiting game, I'm afraid. PCa grows much more slowly than many other cancers, and this wait is not significant from that point of view.

User
Posted 27 Aug 2019 at 12:39

Penfold 


Sorry to see you here, especially as you've already got a battle with cancer going on.  I can't add anything to Andy's reply except my best wishes.  Should you need this community when your results come through, you'll be in the company of knowledgeable and kind people who will be very supportive.


Ulsterman

User
Posted 04 Sep 2019 at 13:07

If you have a good team behind you times stated are not always the case. From been told by my doctor psa 17.5 it is only 5 weeks and I am having bone and organ scans tomorrow and Sunday. My result was T3B so scans needed to check any spread. Sure you will get quick treatment and hope all is fine. 🀞

User
Posted 01 Oct 2019 at 11:45

Bad times. I am on hormone and radiotherapy.  First week on bicalutamide so only the start of my journey. Expected treatment is 2 years πŸ˜ͺ but life goes on. I am sure you have seen many posts stating a strong mind goes a long way with all the treatments, this is so true. We will all have an occasional fall at the fences but family will play a big part in all our journeys.  πŸ€žπŸ‘

Edited by member 01 Oct 2019 at 11:46  | Reason: Spelling !

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User
Posted 27 Aug 2019 at 02:05

Hello Brian,


Sorry you're sitting there worrying about this, and on top of your existing cancer. Until the biopsy is done, no one can say if you have PCa or not. An MRI scan can identify areas which need checking, but it cannot tell if they are cancer or not, so you're just going to have to wait for the biopsy. Do you know what your PIRADS score from the MRI was (a number in the range 3-5)? Because you were being closely monitored, and your PSA doubling time is still very long (approx 5 years) it's likely that you've been caught quite early if it is PCa.


Hospitals vary, but typically you will wait about 3 weeks from the biopsy until you get the result, so it's a bit of a waiting game, I'm afraid. PCa grows much more slowly than many other cancers, and this wait is not significant from that point of view.

User
Posted 27 Aug 2019 at 12:39

Penfold 


Sorry to see you here, especially as you've already got a battle with cancer going on.  I can't add anything to Andy's reply except my best wishes.  Should you need this community when your results come through, you'll be in the company of knowledgeable and kind people who will be very supportive.


Ulsterman

User
Posted 03 Sep 2019 at 14:08

I am on my journey at the moment with PC. Only five weeks since my doctor told me I had a psa of 17.5. Now had dre, mri, biopsy, results and now waiting for a ct/bone scan on Thursday.  Told I have a T3B result with possible spread of the cancer. You are facing battle number two. As a newcomer to all this, all I can say is keep strong, appreciate every day and love the people around you.They are fighting this battle with you too ! All the best.  πŸ‘πŸ€ž

User
Posted 04 Sep 2019 at 12:47

What a warm welcome - thank you.


So my update following discussions with the urologist during TRUS biopsy on Friday:


Likert score from MRI is 4/5, which means that PCa is 'likely' - therefore Gleason score unlikely to be below 6, as Likert score is 4 and biopsy considered necessary.  MRI/ultrasound showed no evidence of prostate wall breach or mets, so whatever it is appears fully contained (2 x sites/lesions (is that the right terminology?) in prostateπŸ˜•). Pathology results in ~2-3 weeks which of course will confirm whether it is/or is not and if it is subsequent Gleason score, treatment options etc. The consultant said from what he can see on MRI/ultrasound - it probably is, but let's wait for confirmation. If it is it's been caught early.....


I hate this waiting bit!!

User
Posted 04 Sep 2019 at 13:07

If you have a good team behind you times stated are not always the case. From been told by my doctor psa 17.5 it is only 5 weeks and I am having bone and organ scans tomorrow and Sunday. My result was T3B so scans needed to check any spread. Sure you will get quick treatment and hope all is fine. 🀞

User
Posted 01 Oct 2019 at 11:13

So PCa confirmed, as I suspected.


Initial staging: T2bN0Mx Gleason 7 (4+3), 5/6 cores left side 1/6 right side (although he suspcted they may have missed one or two) right side.


CT scan in 2 days time.


So only offered RP or RT/HT - too far gone for other options (AS, Brachytherapy etc πŸ™„). RP decided on, given lowest clinical risk of interaction with the leukaemia.


My wife and I had spent the 4 weeks waiting for the biopsy results to come in to discuss the possible options, so when the result came we knew exactly what our approach would be (We are both reasonably well informed as we run a private health company)

Edited by member 01 Oct 2019 at 11:26  | Reason: Not specified

User
Posted 01 Oct 2019 at 11:45

Bad times. I am on hormone and radiotherapy.  First week on bicalutamide so only the start of my journey. Expected treatment is 2 years πŸ˜ͺ but life goes on. I am sure you have seen many posts stating a strong mind goes a long way with all the treatments, this is so true. We will all have an occasional fall at the fences but family will play a big part in all our journeys.  πŸ€žπŸ‘

Edited by member 01 Oct 2019 at 11:46  | Reason: Spelling !

 
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