Hi Chinup1, I'm so sorry you have to be here, I have prostate cancer and can say your husbands tests are what we all go through, the nuclear medicine, "bone scan," is routine and not because they suspect something, and though a PSA of 39, with a familial connection to prostate cancer does make it likely your husband has it, it's possible other conditions are responsible, Chinup1, I know guys with a PSA over a 1000 who have been cured and modern therapies and medicines are so much better than just a couple of years ago and getting better all the time, and 98% of men who get prostate cancer do not bie from it. best wishes with your results, and if I can help in any way please ask.

Eddie 

Hi Eddie. Thank you so much for your reply it is much appreciated at this very difficult time. My husband had his biopsy Tuesday and we had a summary on mychart (a letter sent to my husbands GP) The summary was they detected a nodule on the right side of his prostate. My worry is that it has spread to bones lymph nodes. This only started beginning of February. He went to the doctors they gave him antibiotics that didn’t work, so no infection. Then they sent him for a CT scan those results are pending. My husband gets up almost every 1..5 to 2 hours every night for a pee. During the day they are much better. He is eating very well good healthy diet and no other symptoms at all. No pain anywhere. He had a full blood count done every test came back normal apart for his psa. 

I'm so sorry you are dealing with this also. I do hope you are getting on ok.

once again thank you for your reply.

Jan

Hi Jan. Though I'm sorry Len has prostate cancer, which always seemed likely, his Gleason score 3+4=7, is very good news, if confirmed and I don't see why it shouldn't, means whatever treatment you choose will be to cure, with an almost 100% success rate. Jan I don't want to tell you which treatment to choose, but maybe you should ask about brachytherapy and triple therapy, and it's good to see his PSA is down a little as well, there's an excellent book online, fighting prostate cancer a survival guide, by Jyoty Shah, which will help enormously. 

My recent change of treatment, due to bone mets is working well, no pain and PSA down to 0.5, and I'm still on holiday, leaving the Scilly's tomorrow for a couple of days with my son and family and the little angels, then it's Back to Scotland to take my now, married aunties home, and spend some time with them, then back home to Yorkshire, for treatment and appointments, Booo.

love Eddie and family xx 

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 

Hi Eddie,

Thank you for your reply. You are so knowledgeable and you explain everything so well.

I’m so sorry to hear about the tumours on your spine. My heart goes out to you. I'm sending you my warmest thoughts and positive energy for a full and speedy recovery. Please don't hesitate to reach out. 

Life really sucks sometimes one day you are worrying about mundane things and the next you are worrying about the C word.

I’m so glad I found you on this chat forum you do not realise how you have helped me through it all.

I’m now off to bed we have an early start in the morning our appointment is 10am and we have a 30 minute drive, that time in the morning could take one and a half hours. I will keep you updated how Len gets on with his hormone treatment.

Love Jan & Len xx

Hi  Jan  thank you for your good wishes, there appreciated my friend, and I'm sorry but I thought I'd told you about my bone mets,  anyway as I said I too am hoping for SBRT to the mets, but not yet as my HT is working well, I'm almost pain free, and I have 6 holidays lined up , best wishes with your appointment ttomorrow my friend, and tell me about traffic and parking, and thank you for the updates, and if I can help, I'm happy to do so.

love Eddie and Sheila xx 

Hi Eddie,

Hope you are well. Len had his MRI scan today and has been asked to return for another MRI in 6 weeks time to see if medication is working. Tonight will be the first time Len takes his medication. 3 relugolix tonight and then 1 thereafter each day plus one a day of Tamsulosin so hopefully we will see an improvement in his peeing at night. The Journey this morning was great, forgot the kids are on holiday so that made a difference, also the parking was better going that time of the morning. 
Well Eddie I hope you and Sheila  have a wonderful Easter, Len and I are just going to chill. You will have to tell me all about your holidays, 6 holidays lined up wow.

I will keep you updated about Len. 
take care

love Jan & Len xx

Hi Eddie,

Hope you are well. Len had his MRI scan today and has been asked to return for another MRI in 6 weeks time to see if medication is working. Tonight will be the first time Len takes his medication. 3 relugolix tonight and then 1 thereafter each day plus one a day of Tamsulosin so hopefully we will see an improvement in his peeing at night. The Journey this morning was great, forgot the kids are on holiday so that made a difference, also the parking was better going that time of the morning. 
Well Eddie I hope you and Sheila  have a wonderful Easter, Len and I are just going to chill. You will have to tell me all about your holidays, 6 holidays lined up wow.

I will keep you updated about Len. 
take care

love Jan & Len xx

Hi Jan, isn't driving when the kids are off school wonderful. I hope Len's MRI went well, and you start the meds today, yippee, what a relief for you both that you're beginning your fight back against this awful disease. the loading dose is normal, they've probably told you this but take your relugolix at the same time every day, but not before breakfast, and don't take tamulosin and go straight to bed, an hour or two before is fine but remember tamulosin starts working best 6 hours after taking it, so decide which time of day would it be best for Len. It's a quiet Easter for us as well, just Sheila and I, since November 1st,we've only had 6 day to ourselves, so it will be nice to add to that, happy Easter my friend, to both of you, Or first holiday is on the 25th to Glasgow, to meet friends, some of them from the Macmillan community.

love Eddie and Sheila xx

Hi Eddie,

Thank you for your reply,  Len has decided to take his medication at 7pm every night as he needs to take one of them after food. Hope we are doing the right thing. 

How lovely meeting up with friends from Macmallan hope you have a lovely time. 

take care

love Jan & Len