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Been to see the specialist today

User
Posted 13 Oct 2018 at 15:48

Everyone has their own way to go through this process. In my case I found learning a little more about the condition helped. I bought a book by a renowned USA based surgeon which I found really useful in combination with the help from the local NHS prostate team and Prostate Cancer UK. 

Dr. Patrick Walsh's Guide to Surviving Prostate Cancer (Fourth Edition)

(I cut and pasted in the name of the book, I’m not sure why it’s come out so big. I’m not on commission!)

Edited by member 13 Oct 2018 at 16:07  | Reason: Not specified

User
Posted 13 Oct 2018 at 16:13

Michaela, differing viewpoints as ever.

That’s the interweb today, and thank God for it - that’s how I found my Demi-God surgeon and oncologist......

Cheers, John. Still breathing.

Edited by member 13 Oct 2018 at 16:18  | Reason: Not specified

User
Posted 13 Oct 2018 at 16:57

Thank you to all of you, every pathway/experience is vitally important to us at this time. We obviously want to get the best/quickest investigations/treatment that’s right for us. Which is where all you lovely people come in. Who better to ask than those who’s been there before us! I realise different approaches to this is can be different for us all, but I think we like a bit of knowledg, so we are sure we are going down the right route.

 

Im sat here thinking the worst, and it got me thinking about statistics. I wonder how many people with the same  symptoms and history as us, have been ok when the mri and biopsy has come back?

Thanks again to ALL of you, your advice is very much appreciated at this worrying time.

Michaela x

User
Posted 13 Oct 2018 at 17:30

Originally Posted by: Online Community Member

Dr. Patrick Walsh's Guide to Surviving Prostate Cancer (Fourth Edition)

(I cut and pasted in the name of the book, I’m not sure why it’s come out so big. I’m not on commission!)

Brilliant book. We had the earlier copy first so this one slightly updated. Dr Walsh I do believe is the gentleman who first discovered then developed the first nerve sparing prostatectomy so he is indeed regarded as THE GOD of  prostate surgery in America. Retired from surgery himself now but still very active in the prostate world.

User
Posted 17 Oct 2018 at 12:11

Hi, 

it’s biopsy day tomorrow, Mr L isn’t looking forward to it neither am I! But we will know what we’re looking at. Been trying to find out the odds of it not being PC, google is driving me mad! Anyone know the odds?  I just feel sick, and am envisaging all sorts of negative situations and conversations. Trying to keep up beat and positive, which I am managing most of the time, but sometimes I think only negative things. How the hell does life go on?

thank you for listening 

 

User
Posted 19 Oct 2018 at 09:34

Update - Template bx was done yesterda, Mr L is physically ok after it, in fact very well! However the Mri has shown a 2.5 cm tumour which abuts the capsule, the radiologist report has staged it as T3aN0M0. However the surgeon has said they can’t say it’s cancer until the biopsy results are back. To say we’re floored is an understatement as most of you probably know how that feels.

Im just struggling to understand why the surgeon didn’t confirm that it was cancer, is there still a chance it isn’t?

Is it right that the staging TNM is different depending on which cancer it is?

 

from what I understand T3a means it’s could just be spreading out if the prostate, meaning it’s still relatively early?

If anyone has any advice on the above and what might happen next, I would really appreciate it, as well as any positive stories.

Thank you

User
Posted 19 Oct 2018 at 09:44

I‘m very sorry to hear they’ve found something on the scan. I suggest you give the Prostate UK free helpline a call, the Nurses are very knowledgeable and should be able to answer most of your questions. 

Once you get the biopsy result the next steps will be advised. If it is cancer and you go with surgery or radiation/hormone treatment the odds are very much in favour of getting rid of it. 

It‘s much easier said than done but try not to worry too much and take it one step at a time. 

User
Posted 19 Oct 2018 at 10:03

Thank you for your kind words Mike. Yes I briefly spoke with the nurses yesterday, they were very nice. It’s just a waiting game!

User
Posted 19 Oct 2018 at 14:38

Originally Posted by: Online Community Member

Is it right that the staging TNM is different depending on which cancer it is?

from what I understand T3a means it’s could just be spreading out if the prostate, meaning it’s still relatively early?

 

The ability to confirm cancer based on MRI depends on the type of MRI - the more detailed ones will give a score out of 5 for how likely it is - a 1 means it is almost certainly not cancer and a 5 means it almost certainly is cancer. But without a biopsy they cannot confirm the diagnosis. The biopsy will also tell them which of the 27 different kinds of prostate cancer it is, which is important because some rare types need a specific treatment. Adenocarcinoma is the most common by far. 

 

The TNM has nothing to do with different types of cancer, it is a way of describing the full diagnosis.

T is the staging - T1 means the tumour is small and in only one part of the prostate, it can't be felt in DRE and often can't be seen on scans. T2 means the cancer can be seen and may be felt. T3 indicates that it is at or close to the edge of the gland or has broken out but only in a limited way - to the closest lymph nodes perhaps. T4 means it has broken out and invaded local tissue such as the bladder. 

N is about the further afield lymph nodes - if it has gone to the lymphatic system it is considered incurable but can be controlled

M is for metastases / spread - usually to the bones but might be lung, liver, etc. 

 

It is possible to be T1 or T2 but still have mets to bone or organ although this is more rare. T3 is not considered to be relatively early. 

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

User
Posted 19 Oct 2018 at 15:29
Interestingly T3a is "locally advanced" so is not as early as you would like it to be, however it is rare in the UK to catch Pc really early because there is no effective screening and PC rarely produces side effects until it's been there a while (years!).

Now you have your staging the G score is important and it could still be a benign leision hence the need for biopsy.

At this stage you will have just about all forms of treatment available so now would be a good time to research these so you can ask informed questions when you get the definitive result from the biopsy.

User
Posted 19 Oct 2018 at 15:34

Originally Posted by: Online Community Member

N is about the further afield lymph nodes - if it has gone to the lymphatic system it is considered incurable but can be controlled....

My post operative histology came back as T3aN1M0 after two out of fourteen lymph nodes removed proved cancerous on biopsy.

My hopelessly optimistic oncologist told me I am cured despite those results, so I am off to see a Harley Street oncologist soon to see how cured he thinks I am....

Anyway, I am enjoying being cured....for now...

Cheers, John.

User
Posted 21 Oct 2018 at 07:49

Thank you once again for the informative replies.  We are very up and down at the moment, and I think things are starting to sink in.  We are preparing for a Pca diagnosis, and just praying it hasn't spread.

The MRI machine wasn't a mpMri.  The staging that the radiologist has given, could this change?  I'm thinking about the fact they'd said the 2.5cm tumour was abutting the capsule, they also said there was no lymphadenopathy or pelvic metastasis, which I'm clinging on to.

I know that Pca can be a slow growing cancer, but I'm thinking every day counts now.  Just want to start some sort of treatment or preferably to have the prostate removed.  Will they still remove the prostate if the cancer has broken out of the capsule?

Sorry for so many questions,

Thank you again

 

User
Posted 21 Oct 2018 at 08:27

The treatment offered may depend on your local team to a certain extent. I’ve just had my prostate removed even through they knew it was starting to spread (Gleason 9). It turned out to be T3b but they think they got it all. My lymph nodes were found to be clear. 

By way of contrast I have a friend who was Gleason 10 who was down to have the procedure in Belgium. Once they had him on the table and actually saw it had spread, confirming it had spread to lymph nodes by biopsy while he was still under. They then closed him up and he went straight into HT and RT. He is now clear and although told he would be on HT for 2-3 years they took him off at around 18 months. 

The stats are pretty positive whichever route you decide to take.  

User
Posted 21 Oct 2018 at 09:48

If the scan was not an mpMRI hi-res, hi-def, scan at 3 Tesla resolution, how can they tell the full extent of the cancer (if any)? The only way to tell is to look inside, which in a way the biopsy does, but that is no indicator of spread.

My tumour was 15mm and turned out to have spread, despite the scan indicating it had not.

Anyway, the biopsy result will be another piece in the jigsaw, so try not to worry too much about it till then.

Cheers, John

Edited by member 21 Oct 2018 at 11:10  | Reason: typo

User
Posted 21 Oct 2018 at 11:29
Even with a 3T they can't tell for sure, a 1.5 t will still show tumours. All require skilled human interpretation unless the cancer is so advanced it has destroyed all the normal structures.

If the cancer has broken out surgery is still an option it all depends how far it has gone. At some point it becomes more effective to use radiotherapy as the curative option.

User
Posted 21 Oct 2018 at 13:16
Some surgeons will operate even if it has just broken out; others would refuse. Some would refuse if it looked close to breaking out. Part of the problem is that they have to report their stats and so it is a bit risky for them to take on patients that could make their results look bad. Unfortunately, a couple of the supposedly top surgeons with amazing results are known for cherry picking only the safest patients. Others may look like they make more errors but are actually the brave ones who put patients before league tables.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Oct 2018 at 23:16

I had an MRI in May which was staged as T3aN0M0.  Afterwards I had a TRUS biopsy which came back negative.  So there is a chance that it isn't as bad as you fear.

Having said that I'm still waiting to find out why the staging might be T3aN0M0, when there isn't cancer.  I was given the results by a uro-oncology nurse who wasn't able to offer any explanation.  My PSA will be monitored on a regular basis and I will have my first follow up meeting with a consultant this week, so I'm hoping to feel more informed.   At the back of my mind is the possibility that the TRUS biopsy may have missed the tumour, but I have been able to forget about it all for 5 months.

Fingers crossed for you.

User
Posted 24 Oct 2018 at 05:56

It’s weird isn’t it? 

Had your mri actually seen anything? I thought the idea was to have the mri first, then if there’s something there to target the biopsy at, that’s their aim. My hubby has a 2.5cm target. What’s is your psa reading? It’s such a worry isn’t it.

User
Posted 24 Oct 2018 at 06:41
I had an MRI and biopsy staged mine at T2B actual staging post RP was T3a. Simple fact is until it's out and under a microscope they are estimating.

MRI on its own is an indicator of risk, it is not proof hence the need for biopsy. I think I would be asking for a template biopsy if the consultant validates the MRI.

User
Posted 24 Oct 2018 at 06:48

This is my other worry that they haven’t staged it right with the MRI. It did say it suggested early t3a. My hubby had a template bx, but the nurse had said they only took 12 samples, so I’m presuming it’s just from the tumour.

 

 
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