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Nervous and confused

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User
Posted 25 Apr 2018 at 16:04
Hi my name is pat and I am married to my lovely Allan. We live in Dorset and have been following the “bake off” special for cancer awareness. The story of Bill Turnbull put a huge lump into our throats. Iv been asking Allan to have a PSA test for about 6 years but as he was unsure of the type of test he “just put it off”. So when we saw the Bill Turbull story I asked again for him to please have the test. He said yes!!! So I booked it and within a week we had a result. His PSA was 18 so high enough to concern the GP. Since this result Iv read as much as I can go try and understand but am still quite nervous and confused. On the action of our GP this was followed up with an appoint to speak with the consultant and this was followed by an MRI and now a biopsy to take place tomorrow 26/04/18. The only symptom my hubby has is an intermittent passing of water . He gers no problem at night in fact he goes through the night every night never getting up. He has no worries getting an erection and even the consultant was slightly concerned. So at this point any words of advice, encouragement etc would be greatly appreciated 😊
User
Posted 25 Apr 2018 at 17:01

Pat, you don't mention a DRE so I assume one was not done. If you can contain your understandable anxiety until you have the MRI and biopsy results, you will know whether PCa is involved and if so what grade. That will determine treatment options. But it is equally possible that your husband has a lesser prostate problem which is eminently treatable. Keep us posted and we can help with advice when we know more.

Good luck

AC

User
Posted 25 Apr 2018 at 18:04
Hi Pat, it is confusing at your stage, but you have very few facts at the moment, and you need to be patient. It's not easy, I know, but searching for clues as to what "might" be the case will probably make you draw all the negative conclusions.

The situation will come clear only after Allan has had his MRI scan, and then biopsies, if that's what the scan calls for. Only then will the consultant give you the low down, and the proposed treatment, and why.,

There are dozens of "what if's", digging them out will only serve to worry and panic.

But don't forget, his PSA is very low, he doesn't have any symptoms, and doesn't even know if he has cancer.

He's pretty much in the same situation as I was some months ago. I only ever considered facts which were proven, and Im pleased to say I kept a lid on the worry and panic.

My radiotherapy ended about a month ago, and Im pretty confident I've been cured.

Good luck to you both, please keep positive.

User
Posted 25 Apr 2018 at 21:38

Good luck with tomorrow.

I remember the waiting for diagnosis to be a tough time and hopefully for you it will be one of the other reasons for the PSA. I have seen a fair few posters here get the all clear and a course of antibiotics!

We didn’t but once we had the cancer diagnosis strangely it seemed easier to know ( though my husband got a low risk diagnosis so one of the luckier ones) .

Not knowing was the hardest time - December 2016 for us - MpMRIand template biopsy for my husband.

Fingers crossed you get good news but best you know either way of course.

Let us know won’t you

Clare

User
Posted 26 Apr 2018 at 00:27
Thank you all so much for the positive responses. I do agree it is very important to “not panic” and I’m trying harder than ever to be patient and only react on the facts... I’m maybe not doing so 100% but the biopsy is tomorrow 26th April 2018 so a few more weeks and we should know the direction we will be going in. I can’t say thank you enough to you all for this support. It really does make you feel your not alone. I will post as soon as we have news 😊❤️
User
Posted 26 Apr 2018 at 08:42

Hi again Pjgrinter,

After replying to your message on my thread I looked and found that you have started your own thread so I will try to contribute here too. 

It would be interesting to know if your husband is going to have a TRUS biopsy which is done with a local anaesthetic and ultrasound or a template biopsy which is usually done under general anaesthetic using data from the MRI scan?

One other thing that I forgot to mention is that another reason why it is better to have the MRI first is that the biopsy is likely to cause some internal bleeding and this can make the MRI scan more difficult to interpret if it is done too soon after the biopsy. This is not a problem in my neck of the woods where it seems to take forever between appointments and procedures. https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif    

All the best for the biopsy tomorrow. 

 

User
Posted 26 Apr 2018 at 14:07
Hi Allan’s just gone down now... he has had an mri last thurs and I believe he is having the trus biopsy.... so will post again when there is news 😊
User
Posted 08 May 2018 at 18:46
Hi. Today we have received the long awaited appointment for the results of Allan’s biopsy. We go on Monday 14th to see the urologist . I’m a bit concerned that allan is going straight to see him ... but this is founded totally on the unknown once again. We are holding together the nervous waits but roll on mon ...and of course fingers crossed.
User
Posted 08 May 2018 at 20:27

Who did you think you might see instead? An appointment with the urologist seems normal to me - it was s/he who ordered the scans & biopsy, I imagine?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 May 2018 at 20:35
. answering your question...I don’t know. .... I don’t think it’s the same person we saw before but I guess they may be on the same team? I don’t really know what I’m thinking .... there’s just so much to try n understand. And I know ... one step at a time . Thanks Lyn 😊
User
Posted 08 May 2018 at 22:03

Hi Lyn

What you can expect when you meet the urologist are two things.
Firstly, you will get the results of your biopsy, things like his Gleason score.
Secondly, based on the above, you will get recommendations as to what treatments are appropriate for him, and the pros and cons for each option.

If you have a choice to make, you dont have to make it there and then, come away and discuss it between yourselves.

It will all become clear, please try to resist trying to predict or imagine what will be said, because you are almost certain to be wrong!. I know it's difficult, those of us who have been there before you all understand.

Good luck!!

User
Posted 09 May 2018 at 14:38
Thank you fir all that info... Monday will soon be here and then we can hopefully move forward
User
Posted 14 May 2018 at 22:43
Well we had the appointment today and Allan has got prostate cancer. It’s a very small area confined to the prostate. The consultant recommended aggressive supervision and another biopsy under general anesetic to confirm they have it right. His gleeson score is 3+4=7 and the consultant told us it was slow growing . I’m sorry if this sounds very simple but I’m still trying to understand the terminology of it all.
User
Posted 14 May 2018 at 23:18

Could it have been active surveillance rather than aggressive supervision?

Seems to be good news though - a small tumour and the offer of a more targeted biopsy at some point has to be better than rushing into radical treatment without all the necessary information. Time to relax a bit and think about possible lifestyle changes?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 May 2018 at 08:32
I would research some of the posts on US sites re active surveillance criteria. The UK is way behind the "curve" when it comes to AS because we do not screen for PC routinely so most UK cases are well advanced when discovered.

The presence of any Gleason 7 (3+4) is a concern especially in someone so young. If you do decide to actively treat the cancer the template biopsy will not be necessary.

You would also need to consider family history, PSA doubling time to name a few...

Re lifestyle suggested by Lyne the only proven (contentious statement!) lifestyle changes are diet (reduce dairy, sugar and animal protein - especially if it's not grass fed) and increase exercise.

User
Posted 15 May 2018 at 20:44

Hi Pat,

Thank you for sharing. It sounds like you have a great urologist there who is not rushing you at all into anything radical.. A more targeted biopsy to confirm and a plan for active surveillance if it is indeed small and low risk seems very sensible.

The radical treatments do come with nasty side effects and the ProtecT trial in the UK highlighted a problem with over treatment of low risk PCa, however since my husband was diagnosed with a low risk.tumour in December 2016 I can feel a sea change with more reports of active surveillance being recommended to low risk diagnosis

Fingers crossed the targeted biopsy confirms.

All the best

Clare

User
Posted 15 May 2018 at 21:02
Thank you to everyone who’s taken the time to reply. It’s all very helpful to move forward with as clear a picture as we can possibly have. And thank you Clare for your information which gives me needed hope for what is possibly to come .
User
Posted 15 May 2018 at 22:02

Quote:
francij4;

 If you do decide to actively treat the cancer the template biopsy will not be necessary.

This assumes that by "actively treat" you mean the surgery route and this is the most likely but not necessarily the treatment option that will be chosen. With other options, it is useful to know more precisely where the cancer is located.

Barry
User
Posted 25 Jun 2018 at 15:38

 Hi to all

 Since I last spoke about Allans prostate cancer we saw the consultant and he suggested Allan had a template biopsy. this was done last Thursday and we had a letter today to say that no  prostate cancer was found  from that biopsy . The  Letter continue to say  that it did not mean the first biopsy was incorrect just that the tumour is extremely small. He does have an enlarged and inflamed prostate which could account for the high PSA reading.  Another PSA blood test will be done in four months time to keep an eye on the situation .  Needless to say we are very relieved that the situation is not more serious and that he will be monitored from now on. We are the lucky ones !! 

I do want to say thank u to bill turnbull who went public over his diagnosed prostate cancer... if it wasn’t for him I would probably still be trying persuade my husband to have a PSA rest done! 

God bless you all and chat soon 👍

 
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