HIFU Treatment

hello Bassmaster,

I hope that you do not mind me replying to your post but I saw that you had not yet had a response. Hopefully by doing so your post will move back to the top and someone with experience of HIFU will see it and offer support.

I can understand that you are anxious about surgery and radiotherapy. All I can suggest is for you to talk it through with your doctors and express any concerns and they may be able to give you reassurance. 

You have asked about HIFU and I did find a bit of information that may help while you are waiting for someone to respond to you post.

High-intensity focused ultrasound | Macmillan Cancer Support

I hope this helps a bit and I wish you well with your treatment, whichever ones you decide to go ahead with. In the meantime if there is anything else that we can do to help, please do ask

Jane

THANK YOU .I am so  confused so asking questions about other treatment  because my CNS nurse keeps telling me on last few visits although psa rising don't worry DRE OK don't worry. Last MRI slight abnormality since 2022 MRI, but don't worry as not really accurate. But now seems to me pushing treatment on me as I said liow grade PC. I am so confused and worried  I have suffered anxiety and I am now having councilling. On my last appointment she spoke about treatment again and I said no because as I said in a previous post,  I had sepsis from a nhs procedure not related to PC and was very poorly treated in the two days I kept telling them I was very unwell.. on my last appointment with CNS I told her about my anxiety problem i told her how I am feeling and said I am thinking about other treatments because It might be sooner rather than later I will need treatment , to my surprise she said it could be years away yet. I was shocked by this comment had no further questions for her and just left. I have now recieved a letter for a psa test in Sept 2023. I am so confused??????. I am not coping with all this info very confused.... 

Hi B

I've just spotted your post, sorry to hear about your turmoil.

Do u have any stats, that would help give best advice.

IE Last few PSA readings, Gleeson, what does MRI scan actually show.

Best wishes

Steve 

Hi Bassmaster

It does all sound very confusing and and hard to deal with when you have anxiety as well. I wonder if the letter for the psa test in Sept is a routine monitoring one? Is it something that your GP could explain? 

I see now that you have had a reply from another gentleman who has experienced the same cancer as you. Hopefully he will be able to offer some support. 

You could also think about giving the Support Line a quick call as they would be able to talk things through with you. The number is below if you need it

Jane

Thank you i think you replied to my first post . Gleason 3+3 T1c low grade. Psa 3.6,4.1,4.5,5.1.  One Mri since 2021 . I  have random psa tests not every 3 or 6 months I didn't hear from them for 11 months so decided to phone them they rushed MRI may 25th 2023 .as you said I will ask for Size of tumor have they got to tell me??? Next app sept 2023? They just seem all a bit grey to me as if it's not a big deal , I was only told about where to get help( MAGGIES, MACMILLAN ,PROSTATE CYMRU) When last spoke to nurse june 8th 2023 I have been confused for the last 2and a half years as I said v slow in giving me info and now it's just hitting home????.

 I

Hi B

To be honest with those kind of stats I don't think u have much to worry about.

Probably the same as myself when I went on AS for 4 years in 2013.

You should ask for a copy of the MRI report which should give u size of tumour which I imagine is small at this stage.

I presume that they r not pushing u into treatment.

Radiotherapy is Ok, I had that treatment, but I have read a lot of good things about Hi Fu.

Keep us posted but looks like time on your side so u can relax.

I was very happy going on AS , only thing was having the PSA test every ,3 months but I did tolerate that ok

Good luck

Steve 

Cheers for reassurance the reason for my question about HIFU is that they HAVE been talking about treatment SURGERY the last few visits as I said didn't hear anything for 11 to 12 months now after contacting them Feb 2023 i have had  3 appointments in Last 3 months. And treatment has been mentioned in all 3 appointments I have refused surgery as I am looking at other options. All a bit confusing as stated in previous post on last visit nurse said might be years before treatment.. All confusing. And on last appointment as I am leaving room she said in her last words if you change your mind about surgery phone me anytime even if its next week?? Can you see my confusion... just feel a but down at moment.. thats not me... all getting a bit too much with it all going a bit quick.. having heard nothing for 11 to 12 months.. But I will take solice from your answer hopefully v slow growing and it will be a while before i decide on treatment...

Cheers.. 

Does sound confusing, must admit.

Not good if they keep pushing for surgery, have u mentioned that u would like an alternative treatment.

Other thing to do is to change hospitals, I did it twice because wasn't happy.

Steve 

Hi and understand your confusion. The first thing is not to panic, your stats are very low so there is no rush for anything. Gleason 3.3 means good news. Do you have any stats on your biopsy, how many samples taken and how many showed abnormality? As an example i am Gleason 3.4 but from 21 samples taken they only found abnormality in 1mm of 1 sample, as a result I am on AS and very comfortable with this, but it can be mentally challenging. Try and get your MRI report and do you know the type of of MRI machine that was used, the latest generation are 3 Tesla and give much better images. I have my PSA checked every 3 months but just arrange this with my GP surgery which makes it easier.  The thing with AS is you have to be comfortable with this and you need a clear programme, so 3 monthly PSA, annual DRE and ideally annual MRI and in the future if PSA rises or changes are seen on the MRI then a repeat Biopsy. 

Hi thank you for your reply. My biopsy in 2020 showed 2 cores present cancer out of 12 samples taken.. I therefore choose active surveillance. But as I said in post its all been a bit sporadic and confusing its been random psa only had 3 psa results since the date above 1 dre and 1 mri 2021 and as I said heard nothing in 2022 therfore prompted a phone call in February 2023 and all moving a bit quick 3 appointments in 5 months MRI and Dre. Mri a bit confusing said showed more abnormality but no worry psa rising again she said not to worry??  Then started talking about treatment.. I am 47 yo and looking at different tteatment as surgery has so many side affects for my age I think.. its all a bit grey she keeps telling me not to worry. I also had a really bad experience after biopsy and I still now suffer problems with bowel movements I don't know if it's a result of biopsy but was fine before.. I bleed a lot after bowel movement and very watery movements. Haven't told nurse yet should I tell her???. Didn't think relevant.. I am fit and active and have a good diet. As I said all a bit grey moment and feels rushed at moment got another psa test Aug 2023 this will be 3rd psa test in 7 months???