Hi Eddie,

I do hope you are having a lovely time away and seeing the new addition to your family how lovely. I bet she is gorgeous. I also hope your treatment goes well, I will be thinking of you.

I have had a better day today think I was just feeling very anxious yesterday my mind was thinking the worst, I woke this morning and felt more positive. I’m sure we will have our ups and downs. 

on a different note my grandmother came from North Yorkshire Kilburn. She had connections with Robert Mouseman Thompson. I’m originally from Gateshead, but have lived in Cambridgeshire for many years now.

Thank you for your kindness and support. I will keep you posted with Len’s results. You enjoy your holiday and all the very best for your treatment. Take care.

Jan

Hi Jan, and thank you, the new addition to the family is twins, both girls and utterly gorgeous, and that's lovely to hear your feeling better today, and ups and downs are to be expected, and its good to know you have some Yorkshire connections, my family are from Oban in Scotland, but I live with my partner of 17 years in Bessacarr, a village south of Doncaster, and we have a local church in a village nearby called  Barnby Dunn, who's interior is filled with Mouseman items, and my partner Sheila's favourite place is Cambridge, it's a small world, bedtime for me as it's a long day traveling home tomorrow, sleep well.

Eddie xx 

Hi Eddie,

Hope your treatment went well and you are feeling well, also I hope you enjoyed the rest of your holiday.

well we have finally received Len’s results. 
This was a telephone conversation with the oncologist. This is what he said. The biopsy showed evidence of prostate cancer, he will need treatment radiotherapy or removal of the prostate. Both scans have shown no evidence of spreading. His Gleason score is 3+4 so a 7. 

we have not received this in writing as yet. Len has an appointment this coming Monday 7th for an MRI scan of the prostate. We are both feeling more at ease just would like to see this in writing.

i have started a diary of  Len’s  journey.  The oncologist also said his psa at last reading was 35. So down a fraction from the first one.

well, Eddie I wish you all the very best and would like to thank you again for your friendly chats and support at a very difficult time. I will still send updates of treatment and progress. I think it’s going to be hard deciding what treatment to take, the hospital is going to send information over to us to help with a decision.

take care Eddie.

best wishes 

Jan

Hi Eddy,

I do apologise for not replying sooner. I do hope you are getting on ok with your treatment and  glad to hear it’s working well, It is all such a rollercoaster ride for everyone. Wish I had a magic wand. 

not sure if I mentioned that Len had a MRI scan last Monday, we are still waiting results. Tomorrow we are at hospital for a consultation with the oncologist. I guess to talk about hormone treatment. I had a chat with one of Len’s contacts at the hospital on Friday, he seems to think Len will possibly have 3 months on hormone therapy before he has radiotherapy. 

we have now received full results in letter form. Theses are as follows.

PSA 35

Dre T3

Biopsies grade grade group 2, 5/11 sites

CT and bone scan negative 

Cambridge prognosis group 5

high post void residuals 

brother diagnosed with prostate cancer synchronously.

we also had a letter about Len’s full nuclear bone scan and that has showed up with low levels of osteoporosis in both knees and lower lumbar. I guess an age thing.

I have made notes of the brachytherapy and triple therapy. You see Len has a very enlarged prostate, and still getting up several times in the night so I’m really hoping they can sort that out for him. X

Hopefully we will get MRI results soon.

I will let you know how we get on tomorrow 

Take care Eddie

Jan

Hi Jan, no need to apologise my friend, it's good to hear from you, and thank you my treatment is working well.

Seeing your oncologist  will give you the chance to ask all your questions and finally get to know Len's treatment, though I think they usually like to give hormone therapy a little longer before radiotherapy, as it will shrink the tumour, making radiotherapy much more effective.

I  too had a very large prostate, which needed surgery, a TURP, not common but a possibility,  more likely he will be put on tamulosin, and I also have osteoporosis, chronic,  so please mention Len's tomorrow.

for Len's results, and I appreciate you letting me know,  my eldest daughter Mandy, has just had her scan results and is, as expected  clear, 8 months after being told she wasn't curable. Sadly, our kids' mum was diagnosed just after Mandys all clear, she's been through radiotherapy, surgery and is half way through chemotherapy, we are trying to be hopeful, for good news, best wishes to you both, I will have everything crossed for you both.

love Eddie xx 

Hi Eddie,

Hope you are well.

this is the medication that the hospital have put Len on.

Hi Jan,  thank you for the update, relugolix is a hormone therapy HT drug, which is a very new treatment, which is showing very good results, and waiting 3 months for radiotherapy RT  is shorter than usual but necessary as you must give your HT enough time to shrink the cancer to increase the chances of RT being successful.

Tamulosin will help with Len's frequency. and with luck he won't need to be on them long, and the mission trial is a good thing, having regular MRI scans can only help with providing the right treatment.

Oh Jan, we all have those concerns treatment may not  work, it's perfectly normal. Lens first relugolix dose may be 310mg, this is normal too, and his PSA rise is very small, it will come down with the HT, and I  hope any side effects are kind to Len, and remember there's many treatments for them, so tell your team, or the guys on the forum, we've had them all between us.

Good luck and best wishes to you both.

love Eddie and Sheila xx 

Hi Eddie,

Hope you are keeping well.

This is the treatment that Len has been offered to take part in. It’s called Pace-Nodes (SBRT) the following is a letter we received today. 
You have been diagnosed with prostate cancer and a team of prostate cancer specialists feel that you
would be suitable for both types of treatment (radiotherapy) in this study. This study is recruiting
patients in a number of hospitals across the UK and also hopes to recruit patients in several other
countries. We are aiming to recruit 1128 patients to the study. We need this many to participate in
order to prove whether one type of radiotherapy is better than the other. You have been approached
because your hospital doctor feels that you are suitable to take part.

What is the trial looking at?
You have been invited to join this trial because you have localised prostate cancer that requires active
treatment, your doctor will discuss all suitable options with you. We want to improve the treatment
for patients who have ‘high risk’ localised prostate cancer, where there is a greater chance of the
cancer returning. This is decided by your doctor on review of findings from your biopsy, Prostate-
Specific Antigen (PSA) blood test and scans you will have already had to diagnose your prostate
cancer.
We are proposing a clinical trial “PACE-NODES” testing an advanced type of external beam
radiotherapy called stereotactic body radiotherapy (also known as SBRT) in 1128 participants with
high risk localised prostate cancer. Importantly, this treatment delivers a potentially curative dose of
radiotherapy in only five treatments over two weeks. Half the participants in the trial will have
radiotherapy to the prostate, the other half will have radiotherapy to the prostate as well as the
surrounding lymph nodes. We will follow patients in the trial for at least three and half years to see
which treatment is best. We will be looking at whether it is safe to give this treatment by reviewing
any side-effects that occur and also assessing whether giving SBRT to the lymph nodes as well as the
prostate reduces the chance of prostate cancer returning.
What is stereotactic body radiotherapy (SBRT)?
SBRT (also known as SABR) is an advanced way of delivering radiotherapy (X-ray treatment), which
can accurately deliver a high dose of radiotherapy to the prostate, in a fewer number of visits, also
known as fractions. The treatment can be delivered on a linear accelerator or a Cyberknife platform.
SBRT can reduce the dose to the surrounding tissues and has the added advantage of being more
convenient for patients as there are fewer visits to hospital. From the completed PACE-B trial, which
recruited 874 participants, we published the short-term side-effect results in 2019 and side effects at
2-years in 2022, showing this treatment is as safe as 20 visits. We also presented summary results in
2023 confirming that SBRT treatment is just as good at preventing prostate cancer from returning as
the radiotherapy that would usually be given.

I would really appreciate your thoughts. This is why Len has to have another MRI scan tomorrow before he starts hormone treatment. He will be starting his tablets tomorrow evening.

love Jan x

Hi Jan, and thank you for explaining the Mission trial, first thing to say is Len's diagnosis of localised prostate cancer is good news, meaning whatever radiation treatment he gets will be done with the intent to cure and both have a near 100% success rate.

SBRT also called SABR is usually delivered by a linear accelerator, the same radiotherapy machine used for hypofractionated RT, "20fractions,", which most of us had, given the choice most of us would have opted for SBRT, the outcomes between both treatments are very similar, but the more focused delivery offered by SBRT, means less radiation is needed and being much more precisely delivered, less damage to healthy cells, so a much less likelihood of side effects, so Len is offered this treatment.

Jan,  SBRT is so accurate, I'm hoping to have it to treat the tumours in my spine, so for both of us.

I talked to my CNS today and mentioned Regulolix to her, she told me,  It's only just being introduced, and from what she's learned it's a very good treatment.

Best wishes for you both tomorrow my friend and try to get some sleep.

love Eddie and Sheila xx