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Advice and support please

User
Posted 05 Jan 2020 at 13:06

hello everyone


i am 57 and was diagnosed a little over a year ago with localised prostate cancer PSA 8 and a Gleason of 3 +4. I had a course of radiotherapy in the spring and my PSA dropped to 0.5. It has now crept up to 5.6 and an MRI shows the prostate is clear but one lymph node next to the prostate in enlarged. I have just started hormone therapy and an new MRI will be done in 3 months.


im no in a situation where the cancer is being managed rather than cured and I am struggling with fear nd anxiety since I met my oncologist on Thursday. Any words of support or encouragement would be greatly welcomed. I jus keep wondering when this will kill me! Thanks.

User
Posted 05 Jan 2020 at 14:06

Michael,


Sorry you find yourself in this situation.


If you have just one (or just a few) hot spots, you should ask about having stereotactic body radiotherapy (SBRT - one brand is called Cyberknife). It may well be that your current treatment centre doesn't offer this, so you might need to be referred to somewhere that does, but I don't know the mechanism to do that (someone here will). If it's very close to the prostate, it might not be possible because tissues in that area already had max lifetime radiotherapy dose, but I would certainly be asking.

The MRI will have identified an enlarged lymph node, and if this is due to prostate cancer, the HT will shrink it and it will be smaller on the next MRI.

User
Posted 05 Jan 2020 at 15:20

Thanks for your reply Andy.  I haven't heard of SBRT - I'm going to call my cancer team tomorrow so I will ask. If the lymph node doesn't shrink after the HRT does that mean it isn't cancerous?


It's the constant anxiety that is getting to me. I know I've just had a big shock so I'm hoping that I will gradually adjust. I know that at some level worrying about my prostate will be the new normal!


Hope all is well with you.


Michael

User
Posted 05 Jan 2020 at 16:30

Originally Posted by: Online Community Member
If the lymph node doesn't shrink after the HRT does that mean it isn't cancerous?


It probably means that, but that would also mean they haven't found where the remaining cancer is (well, they might find some other lymph node has shrunk).


I think that before anywhere would do SBRT, they would do a PET scan which can be more accurate for locating cancer cells.

User
Posted 05 Jan 2020 at 18:55

Hi. I can undestand your anxiety and every person is different so treatments vary. My oh had a high psa and high gleason score so had radiotherapy first. Now, 9 years on, he has had various hormone treatments and done really well. He has some spread and after nearly 2 years on arberatitone, he is now having chemotherapy plus zoladex injections every three months. He has a couple of sites where the cancer had spread so is having the chemo to tackle these.


I think what I am trying to say is that you can lead a relatively normal life for many years and your oncologist will do their utmost to keep you well, using what they think is the best option at every stage. My oh found the ht worked well for some time and he even had some respite with no treatment when he was back to his normal self. The thing is not to despair as you have to take time to adjust to the news itself and then to recover from the radiotherapy which can cause tiredness.


There are new treatments being found all the time and you will find loads of advice on here. Try to stay active as this is very helpful and keep up with hobbies etc.


 


 


 

User
Posted 05 Jan 2020 at 20:44

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member
If the lymph node doesn't shrink after the HRT does that mean it isn't cancerous?


It probably means that, but that would also mean they haven't found where the remaining cancer is (well, they might find some other lymph node has shrunk).


I think that before anywhere would do SBRT, they would do a PET scan which can be more accurate for locating cancer cells.



Yes - that seems to be the procedure. I had bone scan, CT scan and MRI none of which found anything to explain rising PSA (after EBRT in 2016). Had the PET scan on Friday in Liverpool and my understanding is that this locates any small amounts of cancer that are undetectable by the other scans.


I understand the worry completely but this forum is full of people who have defied the disease for many years so take heart from that. Check out Dave Kirkham's profile and his most recent post - a real pick me up.

User
Posted 07 Jan 2020 at 18:18

If you use the NHS I think the access route would be ‘NHS Choices’ as you have the right to select any consultant using this. Not sure of all the centres that have Cyberknife off the top of my head but I know the Royal Marsden does.


useful link of all UK centres: https://www.cyberknife.com/locations

Edited by member 07 Jan 2020 at 18:20  | Reason: Not specified

 
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