Just diagnosed

It is available in the UK James but it’s not so much what is available but which is more appropriate for your individual diagnosis and treatment.  My husband didn’t get the transperineal biopsy as they do whichever is more appropriately accessible but I do think it’s important that this is the one definitive test that can give you clear treatment options going forward.  I am sure if you discussed it with one of the MacMillan Nurses or your CNS they could help put your mind at rest. 

Linda

Thank you Linda, all you guy's are amazing.

Kind regardsJ ames.

Hi Retovanian,

This will be a very difficult time for you, your partner and family. Not sure if you have already had your biopsies done, if not, this will be the next step. Really easy and pain free, the waiting on the results is the hardest thing. It is your live, do not feel embarrassed to ask questions and if you are not happy with your medical team, change. Make sure you have 100% confidence in your Urologist or Oncologist. When you meet with your surgeon to discuss your biopsy results, I would recommend that you record the discussion, my surgeon and oncologist had no issues with me doing this. Ask for your Pathology report, get to understand your disease.

Here are some thing that you may want to ask your Urologist or Oncologist to try and gain a solid understanding, I have no doubt he/she will run you through everything and explain what each thing means. Just in case he/she is not open to sharing the detail, some things that you may want to ask:

How many biopsy samples did he/she take?

1. 1. How many of the samples taken were cancerous?
   2. Let’s say they took 10 samples and 2 showed up as Gleeson 6 versus if all 10 samples showed Gleeson 6.
   3. How big is this tumor in volume versus his prostate based on the scans and biopsies?

What is your Gleeson score? In determining your Gleeson score, they will give a primary and a secondary score out of 5 of the two most common grades they found in a sample and then add these two scores together. With a score of 5 being the most aggressive and 3 being the least aggressive. In needle biopsies:

1. Most prevalent pattern is graded as primary and any amount of a worst pattern is graded as secondary
2. Ex: Gleason pattern 3=96% and pattern 4=4%, Gleason score=3+4=7
3. Ex: Gleason pattern 3=95% and pattern 4=5%, Gleason score=3+4=7

What stage is your cancer? Your surgeon will explain if it is Localised, Regional or Metastatic and how advanced it is currently. Stages 1, 2 and 3 are all curable. Stage 4 is manageable, and people live long happy lives.  

1. 1. Did the Biopsies pick up any cancer in the Nodes?
   2. Did any of the Biopsies indicate Intraductal Carcinoma or Ductal Adenocarcinoma? This is rare but the cancer behaves slightly differently.
   3. Is there any indication of Metastasis or micro Metastasis? This is most unlikely as his scans would have shown concerns, nothing to worry about.

What treatment does he/she recommend and what are the next steps?

Hope this helps and apologies for the long response.

All of the best!

Hi James

I am sue as has been said elsewhere on this thread, once you discuss your allergies with your clinical team they will make every effort to make sure you are accommodated and any requests sorted.

As Linda said earlier Prostate Cancer is something that unfortunately early on in the treatment/diagnosis you do lose your dignity and it's important to remember the clinical staff have "seen it all before" and try not to be embarrassed, it's just in a days work for them.

My biopsy took place as an inpatient in hospital as I had other issues caused by the Prostate Cancer and I can honestly say I have nothing but praise for the calm and professional way it was conducted.

You take care and look after yourself - as an aside now you have retired from teaching are you still in a band?

Kind Regards

Brian

Hi James, I had a transperineal biopsy (twice) but due to other health issues, I had them done under general anaesthetic. Maybe something you could ask about.

Regards

Peter 

Hi all,

 I saw the consultant this morning and there is another lession (his words) of 1.6 cm on the other side. He also said they may not be cancerous. Only 20 % are. ( can't believe that) because my PSA is very low. He is arranging a transperineal biopsy and a camera thing in my bladder. He told me not to worry as nothing had spread to the Lymph Nodes or beyond the Prostrate. ( But there is something in my Bladder) He then told me how many Prostrates he had taken out and the number of people who are stll alive today. Brian I am no longer in a band, not really well enough.

Confused.

 Kind regards James.

Hi James

Well, the good news is that you are having the transperineal biopsy and you are also having your bladder checked (you just say there is something there). It's almost like having an MOT test to ensure everything is OK.

The low PSA reading and the confidence of the surgeon should be a boost to confirm all is well and is treatable. It's the usual issue with Prostate cancer, meeting, waiting, biopsy, waiting, results, meeting, treatment.

Thanks for the update - it's the normal treatment path and it's the waiting that's the issue - stick with us and all will be well.

I asked about the band - most of my children have played in orchestras and bands - and i love listening to music - although my tastes are very wide.

Best wishes

Brian.

Thanks Brian,

I am still not sure how to interpret the information from the specialist as my GP seemed to think it was definately Cancer. I also have an illness M.E. and this has taken my co-ordination and speed, making it virtually impossible to play any of the instruments I used to play. Church Organ Sythns, Guitars. It has also affected my muscle memory which is needed to play any instrument. I am not allowed to even drive now. There is something in my Bladder but they cannot identify it from the MRI. My OCD is still convincing me it is Cancer.

Kind regards James.

Hi James

Sorry to hear about the M E - we have a neighbour in the same boat, it's not good but his is almost intermittent - now it's there, then it's not!!  That, with a combination of OCD and now Prostate Cancer can't be too good at all!

You stick with us, we as a community are here for you and as I said before ask away, someone will have "been there, done that" and have an answer. The good news is the consultant is positive all is well and I hope this will allay some of your fears.

as I said before, you are now on the treatment path and things are now moving and that's a positive step.

Best wishes

Brian.

Thanks so much Brian. My OCD is now telliing me that the thing in my Bladder has come from my Prostrate and is Cancer. I am not good at waiting for results as I am very impatient. I just wish I could get this stuff out of my head. The support on here is second to none and I much appreciate it.

Kind regards James.