Oh the wait!

User

Posted 30 Apr 2018 at 19:53

My dad had a biopsy last Thursday 26th April (Age 66/PSA level 55). The consultant said his prostate is very enlarged and hard. No scans have been arranged yet. He received a letter from the hospital today saying his consultant follow up appointment for biopsy results is Tuesday May 22nd! It seems like a lifetime away!!! I take it at this stage they'll only be able to confirm whether or not he has cancer and, if he has, give him his Gleason score? I know the NHS are beyond stretched but I had hoped that as his PSA level is considerably high and he has many prostate symptoms, which led him to see his GP in the first place, they would have called him in for scans in the meantime. Many sleepless nights ahead me thinks.

User

Posted 06 May 2018 at 19:22

I really don’t think saying Prostate cancer is one of the best to get is helpful.

I am exasperated when I see people writing that. It’s not been “the best” as far as I am concerned.

Your GP needs to stop saying that too, it’s a ridiculous statement.

Ian

Ido4

User

Posted 07 May 2018 at 16:04

I agree with Ido.
People don't mean bad when they say so, but I also find it very strange and bothers me when they say those comments about PC.
How can having cancer can be seen as the least problem you have to face just because it is PC. Cancer is bad whatever the type.
Anyway all to best to you and dad lisabun.

User

Posted 05 May 2018 at 16:57

If it’s of any consolation to you, prostate cancer was described to me by my GP as “the best cancer you can get, there are many much worse”, inasmuch that it is usually slow growing and has one of the best statistical survival rates.

Good luck with your Dad!

User

Posted 06 May 2018 at 20:41

Lisabun, I hope now your dad has an appointment this week things get moving at a reasonable pace.

I just find it patronising that some nurses, doctors and others trivialise this disease.

The treatments are not trivial as are the side effects and the possible end outcome.

All best wishes to you, your dad and the rest of the family.

Ido4

User

Posted 07 May 2018 at 21:45

I don't think you should go into the appointment with set questions in your mind - wait to see what the specialist says and what scans they are planning to do. With a hard prostate, it isn't a great surprise that the uro could feel a lump or bulge (the T3c) - they may suggest he goes straight onto hormones while waiting for scans or they may advise waiting until there is a full diagnosis

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

User

Posted 07 May 2018 at 23:48

Glad you got the earlier appointment. I have a little softback notebook that I keep my own questions and reports in and take to every appointment. For my biopsy result I only asked what is going to happen next and when. What are the likely paths. Also I asked about whether a pain I had could be related.

Things happened very fast I got a phone call the day after for 2 scans in the next 4 days and knew the results a few days later.

I was surprised it was with a specialist Macmillan nurse and not a doctor. Although she was very good and I rang her quite a few times asking for results and the like. doubt I could have have done that with a doctor.

User

Posted 10 May 2018 at 07:56

Hi Lisabun, I’m sorry that the biopsy has confirmed cancer in all cores. With it being a Gleason 4+3 too treatment will be necessary.

The medical team seem to be right on top of things and having MRI and bone scan booked as quick as that is great service.

I’ve always had to wait a few weeks for MRI as they are so busy and there are only 3 scanners in my area where around 1 million people live. One of them is a mobile unit parked at a hospital.

They’ve also started hormone therapy very quickly which will knock the cancer on the head.

I understand you will all be devastated, I was too as was my wife and family when I was diagnosed.

It’s a horrible thing and we all think it will never darken our door.

Once the bone scan and MRI results are in the multidisciplinary team will meet to decide treatment options and your dad will know what stage this cancer is at and what will happen next.

I will be thinking about you all, let us know how things go.

Best wishes, Ian.

Ido4

User

Posted 12 May 2018 at 17:10

Hi Lisabun, it may well be they suspect the cancer is at least locally advanced and have started the HT as a sensible precaution.

It will hold things back until they know from scans what they are dealing with.

The information sheets with HT are large and contain lots of information on the range of conditions it’s used for including local, , locally advanced and advanced Prostate cancer.

The waiting for scans and results is horrendous,our minds go through all the possible scenarios, often the worst.

I have been through the whole gambut of emotions and this continues to this day. I had my PSA tested in the January of 2015 and didn’t know the full story ( biopsy in April, MRI in May ) until I saw a urologist 3rd June. I didn’t have surgery until 23/7/15, more than 6 months after PSA test.

It’s horrible dealing with this. You will get to a point reasonably soon where at least you will all know what you’re dealing with and what likely treatments will be offered.

I hope none of this sounds patronising, it isn’t my intention.

I am thinking about you all, Ian.

Ido4

User

Posted 12 May 2018 at 17:15

Hi Lisa, I can't really advise on this but if Radiotherapy is offered it's usual to have a few months of hormones before. Radiotherapy is usually offered as a cure so you might be jumping ahead of yourself. 12 pins and a hard prostate sounds like it needs treatment and for reasons, some of which we don't know it is possible that an operation won't be offered. For example if someone is regarded as overweight or not fit enough they won't offer an operation. Perhaps one day they'll invent instant scans and results, it a worrying time.

I just noticed Ian has posted a reply with similar information. Good luck.

User

Posted 12 May 2018 at 18:27

Hi Lisabun, you are correct that degarelix is usually only given to men who have advanced cancer which has spread. If they didn't explain at the appointment why they were giving that particular hormone then perhaps they sensed that dad didn't want to know - I can't imagine how he would have come to have injections without being tokd what they were for?

It is possible that there is some trial going on into degarelix given early but I think dad would have had to agree to the trial?

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

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User

Posted 30 Apr 2018 at 23:06

Not all hospitals offer scans to all men - in some areas, it depends what the biopsy result was.

At this point, the consultant is unlikely to have seen the biopsy results yet so this is an automated letter. Once the lab results are available, you may get additional letters calling him in for scans in between times. They can't do the MRI scan in the week or two immediately after the biopsy because it affects the reliability of the scan

Edited by member 01 May 2018 at 00:48 | Reason: Not specified

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

User

Posted 30 Apr 2018 at 23:43

If there's a Macmillan Office at the hospital you could ring them and see if there's a Urology specialist nurse willing to talk to you, although any nurse might be helpful. Macmillan don't usually get access to your records until you're diagnosed as a case but if they have a Urology Nurse, or any nurse, they could perhaps find out if the result is available and if they're allowed to run the appointment earlier.

You could ring the consultant's secretary and ask if it can be earlier. You might at least get a better insight into the situation.

The letter says Consultant it doesn't mean you'll meet him.

In theory they have 60 days from referral to treatment although I think they often exceed it. Mine was headed for 90 days but a sudden burst of activity took it to 64.

User

Posted 01 May 2018 at 14:07

Talk to the specialist nurse in your hospital urology department, he/she has access to all your records, and are normally a wonderful source of personalised support and advice. It's also their job😉

User

Posted 05 May 2018 at 16:34

Thank you again for your feedback. My dad has received a hospital letter today asking him to attend this Wednesday 9th May. It says it's to see the consultant and on the reverse it mentions he may undergo more tests, etc. I'm just glad things are moving and we don't need to wait till 22nd before seeing someone again. Hopefully he will get his biopsy results at the very least. Keeping everything crossed x

User

Posted 05 May 2018 at 16:57

Good luck with your Dad!

User

Posted 06 May 2018 at 19:22

I really don’t think saying Prostate cancer is one of the best to get is helpful.

I am exasperated when I see people writing that. It’s not been “the best” as far as I am concerned.

Your GP needs to stop saying that too, it’s a ridiculous statement.

Ian

Ido4

User

Posted 06 May 2018 at 20:16

Ido4, the Macmillan nurse who saw my dad following his biopsy said exactly the same thing. I guess it's of little consolation to those who have been diagnosed with a more aggressive PC. I do hope you are reaping positive results from your treatment.

User

Posted 06 May 2018 at 20:41

Lisabun, I hope now your dad has an appointment this week things get moving at a reasonable pace.

I just find it patronising that some nurses, doctors and others trivialise this disease.

The treatments are not trivial as are the side effects and the possible end outcome.

All best wishes to you, your dad and the rest of the family.

Ido4

User

Posted 07 May 2018 at 16:04

User

Posted 07 May 2018 at 18:21

Thanks guys. My mum has shown me a letter that has been sent to dad's GP from the urology doctor who performed the biopsy.
It states:

"Abdominal and scrotal examination is unremarkable. On digital rectal examination, the prostate felt malignant, cT3. Urine dipstick is unremarkable. During the flow he voided 289mls with a Qmax of 5mls/sec, an average flow of 4mls/sec and a post void residual of 244mls. Trus volume of prostate is 37cc."

His PSA was confirmed as 55.01ng/mL on 9th April.

He hasn't had any scans yet but please could anyone give us some pointers as to what we should be asking when he goes for his biopsy results on Wednesday? The cT3 reference is worrying me a little but I know we need to keep our heads screwed on and try and remain pragmatic. Easier said than done I know, but mum and I want to give dad as much support as possible. TIA x

User

Posted 07 May 2018 at 21:45

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

User

Posted 07 May 2018 at 23:48

Things happened very fast I got a phone call the day after for 2 scans in the next 4 days and knew the results a few days later.

User

Posted 09 May 2018 at 20:56

So, Dad got his biopsy results this morning which confirm PCa. All 12 cores taken were cancerous, with a Gleason Score of 4+3=7. He was given hormone injections today, one either side of his tummy I believe, and is booked in for both a bone scan and MRI scan next Wednesday 16th May. He said the hospital staff were excellent. Bit of an anxious wait now for the scan results (understatement!!!) before we can find out what the best course of action is going forward. Although Dad's journey has only just begun, this site has been invaluable already, He's not the most open of people when it comes to health issues. It was me who had to force him to see the gp and book the initial appointment, but I've now gained so much info that it's really helped mum and I broach the subject with him and talk him through things. We're all devastated but will move forward as a team.......we always have, we always will. Xx