Timelines

what have u been told so far ? 

do you have a psa score from the blood test ?

PSA was 5 (only ever had one PSA)

DRE felt one lump on an enlarged prostate.

Two totally separate 10mm lesions were found on the MRI with contrast with the rider that both were PI-RAD 4 (no mention of either had breached the capsule wall. Only found out on here how important this is)

Then scheduled for Template Biopsies and he was told when we saw the consultant to sign the operation consent form they would be taking 25-40

Discharge Letter said under follow up, after pathology/histology the results were to be sent to the MDT for discussion. Then patient will be contacted

We were counselled about high and low grade tumours and the need to find out which the lesions were as they were both highly suspicious," at the appointment that gave us the results of MRI and after ten minutes discussing this, we were asked if we had any questions and my husband asked "what happens if it is cancer and what is the next stage, only to be told "that is a whole new 45 minute appointment, so let's get the biopsies done and see what is what. As were got up to leave, in total shock as at the first appointment, the consultant went to great lengths to say that my husband was in good shape, I had looked after him well and not to worry as it was all looking good, the consultant seemed to throw in "they could still be benign"

Sorry, we now think that was just lip service as everything and everyone since has given us the impression they aren't, including our GP who asked how we were coping with it all.

This may come across as we are down and negative. We are (now we have our heads round it all) feeling very positive and upbeat, but everything just seems to be taking so long to confirm a diagnosis one way or another and we are going into month 4 in another week. It doesn't help that we really don't know who to contact as we haven't seen the same consultant twice or been given any numbers to contact anyone.

I was lucky in that my TRUS Biopsy results came throughin2 weeks and the urologist who did the biopsy phoned me - would rather have had an appointment. Didn't have an appoinmt,ment for another two weeks - although they had the results te MDT team had not seen it until I had the appointment.  The MDT usuaally only meet once a week so your results might miss one meeting and have to wait for the following week. I don't know whether a template biopsy takes longer to get results through or not - maybe someone who has had one done can answer that.  I don't think it is unusual to wait that long for results to be reported and go through the MDT system just that some hospitals are quicker - luckily my hospital is a local hospital so probably not so busy as others I suppose but as I said if I had waited for results from MDT before knowing the results of the biopsy then I would have waited a month too.  As it is no treatment could be started until after the MDT team met.  How old is your hubby?  The PSA is quite low so am hoping the cancer has been caught at an early stage and all forms of treatment will be open to him and he can be cured.

Unfortunately the waiting part of this journey is the very worst and all we can do is wait and take every day as it comes.

Take care

Des

Thank you Des.

Hubby is 63 and to be honest, I think the MRI scan result was a surprise to the consultant.

We too are hoping they have caught it early and on someone's advice, we sent for The Toolkit and have read up on all the treatments that are offered, and all the associated side effects.                                                   Hubby has a quite physical job, so he is trying to work out if one treatment could offer him a better chance of working his way through treatment or have less time off, but not compromise his health. We do realise that some treatments may be ruled out when we get the results. Our local hospital is a local hospital too and some of the treatments would mean commuting to the bigger area hospital, so not certain if the results would have to be sent there.

We will get there, but you probably know only too well how your mind runs away and you want to know everything yesterday. The family are beginning to arrange Christmas and all we can say is as soon as we know what is what, we will join in the conversation. Just trying to arrange a weekend away to meet up with long lost family that are going to be over from Australia is impossible as it is for a months months time and we have no idea where we will be, but I suppose we will get used to this aspect of life.

Sorry for rambling.

Sandra

I was 71 when diagnosed and do a lot of physical exercise (rowing several times a week). I was offered a choice between hormone treatment and radiotherapy or surgery, but the oncology consultant warned me that surgery could lead to long term "stress incontinence" when exercising. Because of that I chose the HT/RT route and, so far, the results seem to have been successful.

PC is very slow growing and you have time to consider your decision over the treatment path you will follow.

Good luck on your journey. 

Hi, this was the timeframe for my diagnosis.

September 22^nd 2016, PSA 62.23 Referred to Urologist.

28^th September 2016 Urologist DRE examination found, smooth Prostate with the left lobe slighter larger and firmer. Referred for TRUS biopsy.

6^th October 2016 TRUS biopsy undertaken,

19^th October 2016 appointment with Consultant Urologist, Urology specialist nurse in attendance.  Biopsies results shows bilateral Gleason 4+5 in 90% of tissue (high grade high volume disease). Referred for MRI scan and full body bone scan.

19^th October 2016 MRI scan undertaken

21^st October 2016 bone scan undertaken

31st October 2016 appointment with Oncologist, Urologist specialist nurse  Stamped Clinical Trials Practitioner  in attendance (first Hormone (Prostap) injection). MRI scan shows locally advanced T3B disease (seminal vesicles and lymph nodes )N1. Bone scan shows negative for metastatic disease, M0 

Hope this helps

best regards 

Mally

Thanks Mally.

Your timeframe is about half of what ours is running at, at this moment. I think our follow up appointment won't be at least till next week at the earliest.

They say patience is a virtue, but I hate seeing hubby so worried and not sleeping, along with getting stress headaches which are getting more frequent the longer we wait.

Hi Sandra.

I know it's difficult but try not to worry too much. PC is very slow growing and not much will change in the next few weeks.

I was over six months between referral by the GP to the start of treatment which was a very bad time for both my wife and myself, but that's all behind us now. Most of the delay was getting the first MRI scan and the biopsy which took over 18 weeks from referral. After that things started to go a bit faster.

There are 3 time rules.

I apologise for doing this in bullet points

Once is the 2 week rule. - once the GP has referred to the hospital, the hospital needs to give  first appointment within 2 weeks.

The 31 day rule - once a treatment decision has been made, the treatment has to be carried out for most patients (I think its 95%) within 31 days.

The 62 day rule, most of the patients who didn't get their treatment in 31 days have to get it within 62 days,  (I think its 85%).

However that's after the treatment has been decided.

Not everyone you see at the hospital us a consultant,   some will be a less senior, but experienced "Registrar", some may be a less experienced "Senior House Officer".  Dome may be a Clinical Nurse Specialist.

There is a delay in getting to the point where the treatment decision has been made. The sequence is this

PSA testing and MRI to see if cancer is suspected.

Biopsy to confirm or eliminate cancer.  Some detail.is found about the extent and aggressiveness of any cancer..

If cancer is diagnosed, then a bone scan is carried out and possibly a CT scan.

All results go to  Multi Disciplinary Team (MDT).who then say what treatment options can be offered.  The appropriate options can NOT be decided until all results are available.

The options can be given to the patient who may be given time to decide what option to take.

Urologists are usually surgeons and may be a little biased towards surgical treatment.  If RT is chosen, there has to be referral to an oncologist.

Not all hospitals carry out radical.prostatectomy (surgery) or RT.

There is NO rush!

There are arguments both for and against surgery and RT.  Don't be swayed by what one individual or another says, it is an individual thing and you need information on the statistics.

E.G.  surgery is a 2 - 3 day in hospital, 2 weeks with a tube in, perhaps s 6 weeks before return to work.  RT may be five days a week for 6 -  7 weeks.

BOTH surgery and RT have long term consequences.  The consequences of surgery are immediate.  RT has "late" effects that might appear after some time.

Surgical techniques have vastly improved.  

I was referred by a GP I recall about June 2011 and was seen in two weeks, there was a delay because I had to be treated for Prostatitis to eliminate that as a cause of my raised PSA.  I had a biopsy in Sept 2011, given the diagnosis in Oct, had bone scan and given treatment options in Dec.  Opted for surgery which I had in March 2013.

Incontinence and Erectile dysfunction are not 100% automatic with surgery, I have neither.  They are not 100% absent with RT.

Hope this helps, it us a great stress, but there is no rush.  The investigations need to be thorough and the right choice, for the patient, needs to be made.

RT can now be done over 4 weeks now it depends what is standard at the hospital you are referred to.  Also if you are to start  hormone therapy (HT) before RT - and not everyone has this it all depends on what the MDT think right for your situation then you will have Hormone therapy for 3 - 6 months before starting RT.  You may, like myself finish HT whilst going through RT or youmay carry on for a time of 1 year to 18 months post RT giving an overall time of either 2 years or up to 3 years on HT.