MRI results back - very concerned

Hi Porthleven 

Hopefully with a PSA of 25 it hasn't spread elsewhere, the bone scan will obviously tell you that.

Perhaps they can start him on HT very soon to halt any further spread.

No, seminal vesicle spread doesn't automatically mean aggressive cancer, obviously biopsy will tell you

Best wishes 

Steve 

Hello Porthleven 

Thank you for your update - yes PI-RADS 5 - clear view on the MRI and as you say T3b. The PSA is low(ish) so hopefully the bone scan will be clear. The CT will also help to show if there is any spread.

I saw the post above from Grundo and whilst I agree Hormone Therapy should be started ASAP, you can't do this until after the biopsy - you need those results and HT can affect them.

It may be an idea to contact the hospital and tell them you are available to attend any cancellations (this would bring your biopsy appointment forward) believe me they get plenty.

I think you will find some sources refer to cancer in the seminal vesicle as "aggressive" purely as it's left the prostate - it could have been there for ages without you knowing - it's the biopsy that will give you a Gleason score, (how aggressive it is).

I hope this helps - happy to answer any questions.

Best wishes - Brian.

Hi Porthleven My husband had Seminal vesicle involvement and was initially diagnosed as a T3B, You are getting into some interesting territory here and ( subjective to my personal thoughts of course) I think that your husband is possibly approaching the middle line of cure or treatable. With a PSA of 25 he’s swinging towards the better side as it’s relatively low. I believe? overall metastatic activity tends to be more statistically certain at the 100 mark and just because your husbands cancer has moved out of the prostate it doesn’t necessarily mean it’s spread very far.  Try not to panic or overthink things at this point as his scans will tell you more about your husbands individual mix of variants and then that information will point towards what treatment path is best to get good results. This is why the nurse was reluctant to get into the details as it’s not really possible to give a firm answer to your questions at this stage without having the overall picture.

In these next few weeks stick to finding your information on the MacMillan website/ Prostate cancer Uk as it’s clear and correct. Also here on this forum there is a lot of experience and knowledge of drugs and successful treatment paths, so you can gather useful data and questions to ask at future meetings with your team. Random googling could lead you down paths of misinformation and outdated old rubbish that you just don’t need, always look at the date and source of any information as treatments and drugs are fast changing year by year. 
This time of diagnosis is always a very scary few weeks  and getting all the results you need seem like and endless wait, I promise you will get through this part and it will be behind you soon enough. You are doing the right thing by reaching out here on this forum, there’s loads of people here that can answer your questions and help you get through.
Keep strong and ask anything that comes up. 
L

Hi Porthleven I agree with BW that you are on the cusp of treatable/curable.  I was in your position nearly 9 years ago (read my bio).  Once you get the full diagnosis things do get easier.

Hi Porthleven, I’m sorry to hear that you are embarking on this prostate cancer journey that we are all on. For us, getting through all the diagnostics was the most difficult part. Once we knew what was what we felt more in control and it was a relief to start treatment . 

You ask specifically if T3b is curable. My husband was T3a . However, you really need the biopsy results to understand how aggressive the cancer is and the scans to see whether there is any spread to other parts of his body. My husband was treated ‘with the intention to cure’. That sounded wonderful to us but then I realised that it was ‘intention’ and not ‘guarantee’. However, I then learned from the wonderful people posting here that , even if not curable, prostate cancer can be treated and managed successfully for many years. I also learned about all the tools the medical profession have to keep the cancer under control. 

My best advice is to:

1. keep a diary of all the many hospital appointments you will have, the names of the people you talk to, what they said and their contact details ( it all becomes a blur after a while and you can use your diary to challenge ie ‘on such and such date you said…..’)

2. Let the hospital departments know you will take a late cancelled appointment at the drop of a hat ( if you can!) . It gets you through the system quicjer)

3. Get as much information about the disease and treatment pathways as you can . Knowledge is power! It will help you feel more in control.

4. Before each consultation write out, with your husband.  a list of questions . For f2f appointments I used to print off 3 copies - one for me, one for my husband and one for the consultant! 

5. So long as your husband agrees, be with him at appointments. This will enable him to feel supported and 4 ears and 2 brains are better for recalling all that is said

6 Last but, I think, most important, give your husband all the love and support possible. Our menfolk face a difficult journey whatever treatment pathway they are on. The side effects are not easy. I’ve always said this is a couples disease and we found that pulling together brought us closer together in ways I would never had expected!

Finally, about  2 years before my husband was diagnosed my friends husband was diagnosed as T3b in about 2020. He had radiotherapy and hormone therapy and remains disease free! My husband had the same treatment and is now on 6 monthly PSA monitoring . So far, so good but PSA testing time gets the anxiety levels rising. The rest of the time we enjoy life! 

I wish you both all the very best x

Thank you. He did say he’d be able to take a short notice cancellation for a biopsy so they have put him on the list. Not something he’s looking forward to as the nurse said they will be taking lots of samples, I think 28 or 30 were mentioned. 

Thank you for your reply. I read your profile, what a journey you have both been on. It’s the uncertainty that I struggle with, I’m the type of person who likes to be in control, and this has blindsided me a bit. I will take your advice and stay away from unreliable sources, some of the stats can be rather scary which doesn’t help the anxiety. I know keeping positive is so important and I will endeavour to do so. I’m hoping there is no metastatic bone disease found, he has no pain which is a small positive. Thank you again for your sensible comment.

Thank you. Some good suggestions there,I’ll definitely start a diary to keep records of appointments etc.  I agree knowledge is power, my husband is happy for me to do the research and explain things to him. I did feel I had enough knowledge to ask the right questions to the nurse yesterday. It’s positive to read other people’s stories of a similar diagnosis who are able to still have a reasonable quality of life despite the diagnosis, and that it’s not necessarily a bleak outlook. Thank you.

I just wanted to add to everyone else's notes that, had a very similar diagnosis

My grading was T3b N1 MO.

I am being treated with "curative intent".

My research indicate that, as long as any metastases are in close proximity to the prostate - which I think means within the pelvic area - then you have locally advanced Prostate Cancer.

www.nice.org.uk/.../recommendations

The outlook for this is pretty good.

Once you fight your way through the verbiage you will find this reasonably encouraging.

From looking at your notes, you may find that section 1.3 is the closest.

My own view of my treatment is that the best result is cure, and next and possibly most likely is that it kicks it so far down the road that I die of something else.

It is hard to see much difference between the two.

Keep moving forward, despite the much heralded slings and arrows.

Thanks for that, I’ve had a read. I see that the document was last reviewed in 2021 so I think some of the information may have changed since then. It mentions trans rectal biopsy as being the standard offer, where trans perennial seems much more common now. Stats on issues following different treatment options are interesting, I’m assuming that treatment in our case is most likely to be some type of hormone therapy, possibly long term, along with RT, but I suppose we will know more once the CT and bone scan result are received. Both have been scheduled for next week which is good. I’ll be back once I know more.