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, your welcome, It really is the worst time, going through tests and waiting for results, though 1 nodule on one side of the prostate would suggest whatever it is has been caught early, and I'm not going to tell you not to worry as we all do, but I would think whatever treatment plan your husbands team suggests, you will have to decide which, will be done with the intent to cure. If I can make a couple of suggestions, getting hubby a little fitter will be a big help through treatment, never go to appointments alone and always ask for a full copy of the minutes and scan images, and some treatments can weaken the bones so ask to start on bone suppliments sooner rather than later.

Eddie xx 

Hi Eddie, thanks once again for your reply. You don’t realise how much just communicating with someone who knows what we are going through. Len will be 68 this November and he really is fit not overweight he does like a pint or two, on the whole we eat rather healthy fish green veg  brown bread a little of everything in moderation. I have been advised  by someone on another chat forum, they  mentioned  to get him on vitamin C high dose 3000 but going to put this to the experts. Thank you for the advice I have made notes about supplements. I would never let him go to an appointment alone. I’m trying to not let Len see how worried I am, I’m sure he is doing the same. 

you take care Eddie I will keep you posted on the results if you don’t mind.

Jan

Hi Eddie, thanks once again for your reply. You don’t realise how much just communicating with someone who knows what we are going through. Len will be 68 this November and he really is fit not overweight he does like a pint or two, on the whole we eat rather healthy fish green veg  brown bread a little of everything in moderation. I have been advised  by someone on another chat forum, they  mentioned  to get him on vitamin C high dose 3000 but going to put this to the experts. Thank you for the advice I have made notes about supplements. I would never let him go to an appointment alone. I’m trying to not let Len see how worried I am, I’m sure he is doing the same. 

you take care Eddie I will keep you posted on the results if you don’t mind.

Jan

Hi Eddie, we go to a Hospital in Cambridge for appointments. The team and everyone we have seen so far have been so brilliant. 
take care

Jan

Hi Jan, I don't mind at all, I'd be happy to keep in touch, and it's good Len is fit and a good weight as well, as is being at a wonderful hospital, I had a couple of days at a hospital in Cambridge, arranged by my oncologist in Yorkshire, so your in good hands, Jan you have a cancer charity on the hospital grounds called Maggie's, who are wonderful, open 9-5 weekdays, no appointment needed and have so much to offer anyone with cancer their partners and family, www.maggies.org I should have said earlier don't forget to look after yourself too, having been both carer and patient, I don't know which is harder, I will have everything crossed for good results.

Eddie

Thanks Eddie. I will definitely keep you posted. You take can now.

Jan

Hi Eddie,

Well all tests are complete. CT scan, Biopsy, Nuclear scan. Just having a bit of a wobbly tonight. Len is sound asleep and me up and wide awake. I’m so worried and anxious. Len seems to be having less visits to the loo at night, only twice a night for the past three nights whereas he was going five times so he is getting a better nights sleep, he has stopped drinking from 7pm so I think that has helped. when Len had his nuclear scan on Wednesday I asked the nurse how long the results would take she said a couple of weeks. It’s absolutely torture waiting. 

I do hope you are getting on ok. Life just sucks sometimes. I do apologise for downloading my anxiety onto you.

Jan

Hi Jan, that's great to hear Len's, had all his tests, and I know the waiting is awful, so if you need to unload, and get something off your chest, that's ok with me, I do understand, and I'm not remotely surprised you are having a tougher time than Len, you'd be surprised how common it is for the wife/partner to have the harder time, and please remember everyone has a bone scan, it's routine and it's just your team being thorough.

It's good to hear he's sleeping better as well, getting up twice a night is great, with just a little tweak to drinking routine, there are other things to help, should he need them, if you can keep busy, visit family or friends, maybe get away for a few days, it does help with the waiting. 

Well Jan, I must apologise for my late reply, I'm on holiday, I've had a few days in Scotland, visiting family, we drove down to Shropshire to see my youngest and our newest granddaughters 11 weeks old, and gorgeous little angels, then on to the Isles of Scilly for a week and a family wedding, which was today, my kids mum and I have to go home tomorrow to Yorkshire, for chemotherapy, consultations and treatment, but hope to return to the Scilly's at the end of the week.

Jan I was diagnosed nearly 3 years ago, but it doesn't mean your life stops, my very best wishes for your results, and I'm always here if I can help in any way 

Eddie xx 

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 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