Prostate cancer

A support group for anyone affected by prostate cancer to come together, share experiences, and ask questions.

Prostate cancer awaiting diagnosis confused and axious

Strawhead
Posted by

Thanks Steve 

Will let ya know what happens....i thought an MRI would be first but consultant opted for biopshy first 

Uroboros
Posted by

Hi Rabjoh, I'd just like to say that you have my sympathy.

The two worst parts of being diagnosed with a cancer, I've found, are "waiting" and "not knowing".  It seems we're always waiting for something, to see a doctor, in the waiting room, waiting for a scan, a biopsy etc, waiting for the results of the scan, the blood test etc. Not knowing what the results will be, not knowing what the drs going to say, and mainly what the future holds for us!

However, it comes and goes, time will pass and you will get somewhere and you will know something.

It is hard because you perhaps feel it's all out of your control..  

It's not always appropriate for everyone, it's a choice, but getting information about your condition, possible treatments and how to handle things can be of great benefit.

Enjoy your holiday and when you get back, if you wish let me know and I can help you find out more.

freefaller
Posted by

MRI should be first before biopsy as once they have a MRI they can see more clearly where the cancer is so that the biopsy can be targeted to the suspicious area once it is seen.  The best type of MRI is a Multi Parametric MRI but there are few machines throughout the country.  As has already been said the worst part of this whole journey is the waiting for tests and waiting for the results.  As you have had the biopsy first you should wait at least 3 weeks before the MRI for the biopsy site to heal as the MRI will show the inflammation from the biopsy which can cloud the results.  Consultants have their own way of working as you will find out on your journey.  Funnily enough I have just been talking to my brother in South Africa who has also been diagnosed with prostate cancer at Gleason score 6 (3+3) from the biopsy but still hasn't had a MRI so telling him all about this too as his consultant wants him to have an MRI next week but he only had the biopsy last Friday. 

Hope you get through this OK.

Des

Grundo
Posted by

As Des has already indicated, you're going in blind doing a biopsy first.

Perhaps someone could explain to us why they would ever do a biopsy first?

freefaller
Posted by

Do you think it is a financial thing as MRi's are expensive?  IF it isn't I just don't understand it really?  I had a biopsy first not knowing that it was best the other way around.  At that time I had not got in touch with either Prostate Cancer UK or Macmillan as naievely thought the consultant urologist was doing things the right way - I really should know better. I didn't think I needed to contact a cancer forum until I had the diagnosis of cancer  but really it would have been good to have got in contact with these forums a year earlier when I was having difficulty getting a PSA test as I would have had some of this information and known what to ask for.  I now know a template biopsy would be more accurate than a TRUS biopsy and MRI should be done first but for me it was hard just getting the PSA tests done and I should have paid to get one done once my PSA started to rise as it went from 8 to 12 in a year and this would have been picked up sooner had I been able to have the PSA test when I was already worried about it rising in the previous year from 5 to 8.  Whether things would have worked out better for me I don't know but I always wonder if they would have picked up the cancer before it was pushing on the edge of the capsule - although I would have ended up having the same treatment I still can't get it out of my mind even nearly 3 years post ht and radiotherapy that some cells might have got out.  Suppose you just never feel safe again. 

Des

Grundo
Posted by

Des

I know what u mean about near the capsule edge, mine was the same.

But for u if there some rogue cells about I think that they might of got loose by now.

Biopsy before MRI,  cost? U could be right although I think that MRI has come down in price the last couple of years, last I heard about £300

Steve

freefaller
Posted by

Steve,

Still the waiting for results of PSA tests and it never gets easier - though it has never unduly worried me as there is nothing I can do to change things I think my wife worries more than I do - as I would if it was something wrong with her. 

Yes, I often think those rogue cells would have got loose by now too but heck you never know.  My consultant has said they would consider an operation if this happened - not often done but he has complete faith that he would do it. Not sure I would want it as I get older so hope we never get there.

Cost is the only thing I can think of for a lot of things but also different consultants do things differently for their own unfathomable reasons.  Had I known what I know now I would have paid to have the MRI done first and tried to get a multi parametric MRI and had I known about template biopsies I would have got that done rather than a TRUS biopsy.  Though having said all that would probably ended up having the same treatment and the same results so it all worked out in the end a bit like a fairy story but not much eh,  LOL.

Des

Rabjoh
Posted by

all
Just had results of template biopsy. All clear no PCa. Must be one of the lucky ones even with PSA of 37.
Many thanks to all of you for your kind words of support.
Rabjohn.

Grundo
Posted by

That's good news Rabjoh but doesn't explain the psa

Ok infection or BPH can cause the increase but have the specialists given any comments?

Perhaps just a case of keeping an eye on the psa.

Anyway, a big relief for u

Steve

Uroboros
Posted by

This is very good news indeed and I imagine you are very relieved.

It does leave you wondering however, why your PSA is so high. It would be "extra" great, if you had an explanation.

Although the biopsy results said no PCa  (which is great) did it say anything else?

Strawhead
Posted by

Thats great news and congratulations. We are new 9n the Prostate journey and are returning to hospital on Monday to receive results from my hubbys biopsy. These 2 weeks have been horrendous. I do feel hesrtened to know you are ok with a PSA of 37. My hubbys is 19 whilst i know everyone is obviously different it has made me feel a tadge more positive...Congratulations again you must be so releived. 

Strawhead
Posted by

Thats great news and congratulations. We are new 9n the Prostate journey and are returning to hospital on Monday to receive results from my hubbys biopsy. These 2 weeks have been horrendous. I do feel hesrtened to know you are ok with a PSA of 37. My hubbys is 19 whilst i know everyone is obviously different it has made me feel a tadge more positive...Congratulations again you must be so releived. 

Uroboros
Posted by

I'm sorry to hear that your husband is awaiting results, it isn't a pleasant situation to be in as I know from personal experience.

However, you must be aware that having a PSA of 37 and no PCa is very very unusual. 

There is hope of course that your husbands biopsy will be negative, ,let's hope so.

Let us know if it is negative or positive.  It will be a great relief or a great shock and if the latter members in this community can help support you and your hubby in what will subsequently happen.

Rabjoh
Posted by

Sorry to hear about your husbands predicament, hope everything goes well.

Just to clarify my situation re "all clear", with PSA of 37.4.

I have had 3 MRI scans, 1CT scan, 2 bone scans, 1 x 18 core TRUS biopsy, 1 x 13 core targetted biopsy and 1 x 24 core Template biopsy. All were negative for PCa. Apart from a "suspicious" area on MRI's possibly PIRADs 4. Despite that no cancer.

For the sake of clarity, both TRUS biopsies (totalling 31 cores) are taken horizontally through the prostate and the template biopsy (24 cores), vertically. Hence a thorough sampling of the whole prostate. A total of 55 cores. My pathology report shows all cores clear of PCa. Prostate is very large at 90cc. Some evidence of inflammation in 2 cores.

Also on Prostate Cancer UK blog, some bloggers report PSA of over 100, and one of 2000 and no PCa. I would add the caveat that those figures are extremely unusual.

Hope this helps and explains my own situation and experience of my own journey so far!!

Rabjohn 

Uroboros
Posted by

I understand that Rabjohn is trying to reassure you. 

PSA is a remarakably inexact indicator of Prostate Cancer as Rabjohn demonstrates.

This is one of the reasons thst thee is no national secfreening programme like there is for breast, cervical bowel cancer despite its high prevalance

In Rabjohns case this is clearly demonstrated by the fact that some very thorough investigations were carried out and none found PCa,

There is a "probability" that a raised PSA indicates cancer.  I don't have the exact statistics on this.  I also suspect that the higher the PSA the higher the risk.  Since Rabjohn didn't just have one test, it does appear as if the probabality is significant.