I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

I'm new too!

User
Posted 21 Jul 2017 at 10:36

Hi I'm Mark-54 years young fella married to the lovely Peter-well sometimes lol!

Started on "The Journey" last January 2017 after PSA of 4.5-no symptoms at all-referred to urologist at Homerton University Hospital London(any other patients on here?). He originally suspected prosatitis and put me on 28 day course of Ciprofloxacin. PSA dropped to 3.3 in March but then increased to 4.4 when measured in June. Because of the had mpMRI scan and got the results yesterday.

EEK! Was expecting bugger all to worry about but scan has shown suspicious lesions "in the peripheral zone bilaterally extending from base to the apex...with likely extracapsular extension" Report also concludes "if malignancy is confirmed on biopsy...appearances in keeping with T3aN0 disease" Completely shellshocked after this news and signed the consent form for TRUS biopsy two weeks today with results on 23 August.

Still processing all of this with all the bloody fear and anxiety that comes with-can the cancer only be confirmed by biopsy or is it deffo there from evidence shown on MRI? Urologist said prostate cancer is curable but still bloody worried!

Any information/advice very welcome! Anyone in the same boat?

hugs

mark

Keep on Keepin' On!

User
Posted 21 Jul 2017 at 11:18

Hi Mark, and Welcome!

I was in a very similar boat (T3aN0M0) about three years ago, though I was already 62.

I remember watching the world gently spinning around me, but it eventually settled after numerous scans, then came the time to choose the treatment.

Assuming your expectations are confirmed, look at the upsides and downsides of each option; ask about quality of life, not just number of years. If you can take Peter with you, do so: best you both know what's going on, and he will likely remember the details better than you, anyway. If in doubt, take notes.

There's two schools of thought on doing your own research: I suggest reading widely. This site has excellent information, as do some other quality sites. If you're Internet-savvy, you'll know that there's a lot of dross out there too. Best ignored.

 

Good Luck!

Edited by member 21 Jul 2017 at 11:20  | Reason: Not specified

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 21 Jul 2017 at 12:03

Just to add to Andrew's post, I suggest you get the 'Toolkit' from the Publications Dept of this site. You will find it very helpful.

The interpretation of scans can sometimes be difficult so assessment not always accurate - reality can be better or worse than appears might be the case. If cancer found in biopsy cores a grading will be given called the Gleason score. A biopsy, particularly the TRUS one can sometimes miss all or some of the cancer. However, in your case and having had the MRI first, the urologist will have a good idea where to place the needles (simple procedure which feels like being flicked on the rectum with a rubber band!)

When diagnosis is given pay particular attention to the grading and staging as this can affect chances of cure rather than containment and treatment options.

At present you don't have PCa but from what you tell us it seems very likely you have.

Edited by member 21 Jul 2017 at 21:40  | Reason: Not specified

Barry
User
Posted 21 Jul 2017 at 13:58
Mark

I was in a similar boat to you about nine months ago. I had a mpMRI scan and it showed a high likelihood of PCa. T3aN1Mx. That later changed to T3bN0M0. From what you say about the mpMRI scan, it seems likely they will find PCa. Did they give you your PIRAD score - mine was 5, meaning that clinically significant cancer was highly likely to be found on biopsy.

The TRUS isn't too bad. You will have some blood in your urine and semen for a while.

Once things are confirmed, you'll have various treatment options to discuss. Members here are brilliant at answering questions. The specialist nurses are really worth a call too.

Ulsterman

Show Most Thanked Posts
User
Posted 21 Jul 2017 at 11:18

Hi Mark, and Welcome!

I was in a very similar boat (T3aN0M0) about three years ago, though I was already 62.

I remember watching the world gently spinning around me, but it eventually settled after numerous scans, then came the time to choose the treatment.

Assuming your expectations are confirmed, look at the upsides and downsides of each option; ask about quality of life, not just number of years. If you can take Peter with you, do so: best you both know what's going on, and he will likely remember the details better than you, anyway. If in doubt, take notes.

There's two schools of thought on doing your own research: I suggest reading widely. This site has excellent information, as do some other quality sites. If you're Internet-savvy, you'll know that there's a lot of dross out there too. Best ignored.

 

Good Luck!

Edited by member 21 Jul 2017 at 11:20  | Reason: Not specified

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 21 Jul 2017 at 11:42

Thanks for the informed reply Andrew! The crappiest thing is the uncertainty and anxiety of waiting until biopsy and results-stating the bloody obvious there:o( Will try and chill out extensively and use some of the other time to read and research-any other tip-top sites apart from this one?

all the best for the future Andrew!

mark

User
Posted 21 Jul 2017 at 12:03

Just to add to Andrew's post, I suggest you get the 'Toolkit' from the Publications Dept of this site. You will find it very helpful.

The interpretation of scans can sometimes be difficult so assessment not always accurate - reality can be better or worse than appears might be the case. If cancer found in biopsy cores a grading will be given called the Gleason score. A biopsy, particularly the TRUS one can sometimes miss all or some of the cancer. However, in your case and having had the MRI first, the urologist will have a good idea where to place the needles (simple procedure which feels like being flicked on the rectum with a rubber band!)

When diagnosis is given pay particular attention to the grading and staging as this can affect chances of cure rather than containment and treatment options.

At present you don't have PCa but from what you tell us it seems very likely you have.

Edited by member 21 Jul 2017 at 21:40  | Reason: Not specified

Barry
User
Posted 21 Jul 2017 at 13:58
Mark

I was in a similar boat to you about nine months ago. I had a mpMRI scan and it showed a high likelihood of PCa. T3aN1Mx. That later changed to T3bN0M0. From what you say about the mpMRI scan, it seems likely they will find PCa. Did they give you your PIRAD score - mine was 5, meaning that clinically significant cancer was highly likely to be found on biopsy.

The TRUS isn't too bad. You will have some blood in your urine and semen for a while.

Once things are confirmed, you'll have various treatment options to discuss. Members here are brilliant at answering questions. The specialist nurses are really worth a call too.

Ulsterman

User
Posted 21 Jul 2017 at 16:59
Thanks Barry for your words of advice and have already had informative chat with one of the lovely nurses here😀 about toolkit and other matters-can't bloody wait for that biopsy!

Mark

User
Posted 03 Oct 2017 at 09:42

Very happy-no cancer found! After MRI report indicated lesions and likely PCa I got my GP to refer to Royal Marsden Hospital for further investigation. First meeting at Urology clinic involved another DRE-felt normal-and was followed by a day surgery appointment for perineal template biopsy

Had this saturation biopsy late August and had very anxious 3-week wait for results. The worst time ever! Got these on 19 August and this was completely negative for PCa! Phew!!!! Just acute inflammation found in eight cores-still asymptomatic. Suspicious tumour and lesions identified on MRI proved to be non-cancerous. PSA last measured as 4.2(August 2017). Have been discharged back to GP for 6-monthly PSA monitoring. If subsequent blood tests show PSA increase to 5 will be prescribed antibiotics to hopefully bring down. If it stays around baseline (4.2) no treatment required. Will be referred back if PSA increases above this significantly.

It’s been a right emotional rollercoaster journey to say the least and I put my story out here to offer reassurance to other guys presented with a MRI scan report which looks bleak, frightening and suspicious for cancer-biopsy results can be PCa negative. Good luck to everyone on here, especially to those who have replied to my previous posts.

all the best
Mark

User
Posted 03 Oct 2017 at 10:38

Hello Mark,
Thank goodness for that eh!

Thanks for sharing. It will be encouraging for new people on here I'm sure

We can't control the winds - but we can adjust our sails
 
Forum Jump  
©2018 Prostate Cancer UK