Hi lovely people,
it’s been a bit of a stressful day but mainly because with this horrible disease your mind works overtime. My husband got his biopsy two weeks ago and then we received an appointment for our local hospital (which is about 10 minutes from our house). Up until now we have travelled to Edinburgh for treatment, scans and biopsy but apparently they have a Consultant Oncologist who comes once a month to our local hospital to save people travelling, to discuss results and treatment. Any further treatment tho i.e radiotherapy will all be done in Edinburgh. We got the appointment for 24th august so I thought we would get the results and plan for treatment then. Today though my husband had a missed call at work from the hospital in Edinburgh and we tried calling back but it was an answer machine, for four hours. Got till 5pm and I thought we won’t hear now until tomorrow and I just knew I’d be worrying all night, but, happily the CNS called me just after five, he had been doing a clinic. It was the result of biopsy, now I’m not that au fait yet with the terminology but his Gleason was -grade 3 (3 +4 =7) N1 and M0. His initial PSA was 227. He is 57 with no symptoms other than he was getting up at night to pee. He has had three weeks of Bicalutamide then a Prostap injection with another due on 21st August. Hasn’t had another PSA yet but I believe that’s due soon. I’m mainly relieved, though not sure if I should be, but mainly because when they phoned with bone scan result and told us it was clear they admitted that they were surprised as his PSA had been so high and again tonight when they called with the Gleason score they said they were pleasantly surprised it was 7 as they were expecting a 9. Not sure if this is still ‘cureable’ or not and would be grateful for opinions . I also want to thank Millibob again (Brian) for making me smile with his smashing sense of humour, there are days when I’ve been worried sick and his posts reassure me and his humour is a great respite.
Thanks again
Linda
Hi Linda
Yes, looks like some good news in there.
Only downside looks like maybe in a nearby node so outside the gland.
You didn't mention the staging but that would confirm.
Having said that still potentially curable as looks like not spread elsewhere.
So future treatment should be Radiotherapy which should sort it.
Good luck
Steve
Hi Linda
Well - what can I say - thank you. I am here because 18 months ago I was where you are now - wondering what it's all about - there are 3/4 good people on here who put me right and the mystery of PC evaporated and 18 months down the line I feel great - no amazing! - so good enough in fact to want to help everyone who is where I was. Enough of that anyway.....
I am pleased you know where you are going, in brief:
Gleason 7 (3+4) means most of the cancer cells found in the biopsy look to grow at a moderate rate, some however will grow slowly.
M1 M0 - The lymph nodes contain cancer but it's not spread to other parts of the body.
The Prostap -(hormone therapy) will have brought the testosterone levels down and thus the cancer cells can't grow and his next PSA test will be much lower.
I would think after 3/6 months of hormone therapy the next step will be radiotherapy "with a view to being curative". If you click on the icon of the beach you will see where I have been down this road - although I did have a few additional problems involving a catheter - along the way!
I hope with the information from the CNS and with the above you will both be able to relax tonight over a half of shandy.
Anything else just ask - you know where we are.
Best wishes
Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Thank you so much. I’d have been lost without all you lovely and very brave people on here. It’s such a relief to come and talk to people and get advice. It’s very worrying waiting on the results arriving and you guys make me feel not so alone as my husband hasn’t coped well and doesn’t even talk about it or ask questions, although I suppose I ask enough for both of us! Lol
Linda
Hi Linda, it all sounds as if it's not as bad as it might have been. I'm no expert but I recall somebody saying that they had lymph node involvement and that treatment to that node was included in the radiotherapy? Brilliant news that the bone scan was clear! I cried tears of relief when we got the same result. So, carry on enjoying a bit of being 'mainly relieved'! You deserve it :)
I also got myself in a state before and during the radiotherapy! Some very kind people here got me through it. Looking back, the RT was not as bad as it might have been. The hardest part for us was the travelling - that was really tiring.
I wish you all the best for the coming months and hope that you come away smiling with a treatment plan labelled 'with the intention to cure'
x
Morning WW - I was one of the "lymph node crew". At diagnosis there was a discussion between urology and oncology as to if the cancer had spread to my lymph nodes. I started off as a T3a No (it's not spread) and ended up with T3a NX (we haven't got a clue if it's spread!).
The words of the oncologist - and I kid you not - were " once you are on the sunbed we will zap the lymph nodes to be sure".
Medical science at it's best - but happy days - all is good.
Hope all is good in the ww household and he is improving. and you have give up on the covid!!
Best wishes
Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hello Brian, yes, I thought you were one of the lymph node crew but did not want to ‘name’ you directly! Yes, thanks, finally back to normal after covid visited - 3 weeks until we both could go out without ringing a bell and shouting ‘unclean’. My husbands medical encounters this week has been with the dentist for a tooth extraction and opthalmology. . Next week it’s audiology for new hearing aids. We never have a week, it seems, without an appointment with somebody!
hope all is well for you?
Hello WW - Well at least he can see and hear when he goes out and it makes a change from PC appointments - and you can go out!!
All is well here, diabetic review this morning - still overweight - "it's me hormones" and PSA/ Oncology review August. In all honesty I haven't felt this good for years!!
Take care, no doubt speak soon
Best wishes to both
Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007