Newly Diagnosed

[Tulile]

Hi. Thanks for allowing me into the forum. I was diagnosed on Monday that I have 2 anterior tumours. Gleason score of 7 (3 + 4) T3a. No cancer seen in the Lymph nodes. It is breaking into the outer casing. I have a bone scan this afternoon. Assuming my bone scan is all clear, what will be my options ? Is it possible to have a Prostatectomy with it being in the outer layer. I'm now struggling to get in touch with the people who gave me the news. Needless to say I'm very anxious. I have an appointment in 12 days time with a Doctor, I'm guessing they will talk me through the options. I just want things to happen sooner. Thanks for reading.

[Tall_Allen]

While your anxiety is understandable, a few months more or less probably won't make a difference.

prostatecancer.news/2016/08...

The penetration of the capsule puts you in the high risk category. Radiation seems to have superior results to surgery for high risk patients.

In the UK, my top choice would be Peter Hoskin at Mt. Vernon Hospital in Northwood.

[Tulile in reply to Tall_Allen]

Thanks for advice. It's appreciated.

[Leeaussie5]

all the very best to you. This is the scariest time. Tall Allen gives good advice. Take care with your choices. There is much to think about. You didn’t tell your psa score. I understand the nhs doesn’t do surgery with a psa of 20 or more.

[Tulile in reply to Leeaussie5]

I don't know my psa score. I will find out. Thanks.

[Tulile in reply to Leeaussie5]

My PSA scores are 9.92 & repeat was 10.42.

[Leeaussie5 in reply to Tulile]

Looks like you’re getting valuable advice in this forum. I live in Australia. One thing that is a challenge, no matter where you live, is navigating your health system. The Americans talk about the challenges of their insurance coverage, the British about the nhs. Here we have our own maze through Medicare. Getting help and support is so important in the journey. Consider a counsellor- I found having someone to talk to about my fears and experience was a real bonus. I also collected a Physio specialising in urinary challenges and a sexual health doctor. It all helped keeping me in control. Best of luck friend.

[Tulile in reply to Leeaussie5]

I hadn't thought of that , but I will definitely give it some consideration. Thanks.

[Jaffa_2001]

Wishing you all the best on the start of a journey many of us here have been on for a long time. Make sure you are fully informed of your options and the consequences of the treatment route you choose.

The NHS were woefully short on informing me of all the consequences of the treatment route I chose. Plus you have to Police them at times as they can be slow in responding or getting back to you.

Had several run ins with them, do not be afraid to ask questions, take names and make notes so you can quote them if you have to. Don't get me wrong, I have a great relationship with my Urology Team at my hospital, but the administration systems around them are slow at times. So chase them if you are worried.

All the very best - Brian.

[Tulile in reply to Jaffa_2001]

Thanks Brian. I will take your advice.

[CarverD in reply to Jaffa_2001]

If possible take a "2nd set of ears" to the appointments and have them take notes. My wife did this for me and it proved invaluable allowing me more one on one conversation with the doctors.

[Tulile in reply to CarverD]

Good advice. I didn't take much in when I was diagnosed and I was alone. Thanks.

[Xavier10]

TallAllen has good advice about the radiation. You might ask your doctor whether he intends to radiate the pelvic area as a whole as well as the prostate. Seems appropriate, though we know very little from what you have told us.

[tsim]

If your bone scan is clean you are in a very close situation to mine(G3+4, t3a very high risk, tumor in seminal vesicle). Science is showing that the most effective treatment is HDR brachytherapy with ADT and external beam radiation. That is the path I chose and has worked out quite well. Almost 6 years with no recurrence, very low side effects. TA is correct, no need to rush to judgement. I had to wait 5 months while on ADT so my 95cc prostate shrunk down to the size where they could perform the HDR procedure

[conbio in reply to tsim]

Agree with TA and tsim. I was Gleason 4+5, confined to 2 lesions in prostate, PSA 7. ADT for 18 months (though good evidence 12 would do), EBRT, and Brachy. 2 yrs later feeling pretty dang good, last check PSA at 0.21. And yea, try and relax a bit, you have time to talk to professionals, read up, and make your treatment decisions. Best of luck.

[Tulile in reply to conbio]

Thanks 👍

[CubFan in reply to tsim]

I'm also on the HD brachy, ADT, IMRT path. I did a lot of research and this appears to be a favorable treatment. Gleason 4+3, HD brachy last November and 16 IMRT sessions. I stopped Lupron after 6 months - I'll roll the dice. Now hoping my PSA stays low and testosterone climbs. Fingers crossed.

[tsim in reply to CubFan]

I'll be hoping for ya'

[Tulile]

All this is very good information as at the moment I don't have a clue . I'm very grateful for every response. Thanks.

[NanoMRI]

You did not mention the specific methods of imaging. Nine years ago during my diagnosis and primary treatment selection phase, I found multi parametric MRI imaging, genomic testing and many consultations critical to my decision making; all also helped me manage my anxieties. Today, based on my experiences, I would also be getting a PSMA PET and blood biopsy (I have had them since).

When I consult in England I always receive written consultation reports. I received excellent consultations (and still do) from the Royal Marsden on radiation-they recommended surgery for my primary treatment based on imaging and other findings. I consulted with Professor Mark Emberton, University College, on HIFU-he too recommended surgery. And I received excellent guidance from New Victoria Hospital. (When I had a business in Dorking, Surrey, I provided my staff with private health insurance for flexibility outside of NHS). All the best!

[janebob99]

You may want to consider getting a Decipher test done. It will estimate your risk of developing metastasis.

[Tulile in reply to janebob99]

I've not heard of this. Thanks for alerting me.

[Fairway]

Welcome. This is a good place. Lots of caring info. I'm far from an expert but your cancer not dissimilar to mine and I was able to get surgery with a good outcome cancerwise. Good luck.

[Mischa1111111]

It seems you got great advice and encouragement. I did IMRT + ADT for 2years. An exercise program helped me out a lot both physically and emotionally . I started that a few weeks before my radiation sessions. My PSA was 10 and my Gleason was 4+3 . Best of luck. .