Worried about diagnosis of bone mets

Hello CCG 

I am so sorry to read of dad's diagnosis - it's very much treatable, but I can appreciate that at the meeting sometimes they rush things and don't want to be questioned. 

You should receive a full paper copy of the diagnosis in the post and this will also be sent to your GP. One thing i always advise people in England to do is download the NHS app and ask to have dad's records and FULL access to them on the app - you can then keep an eye on things.

Details of how Prostate Cancer is diagnosed are here in this link:

https://www.macmillan.org.uk/cancer-information-and-support/prostate-cancer

M1B - is that the cancer has left the prostate and spread to other parts of the body.

The Score of 3, 4 & 5 will be the Grade Group - 9 being a Gleason Score of 9 or 10.

I know it sounds grim - but is treatable.  Did you come away with any treatment plan?

I hope the above helps - if I can do anything else for you please don't hesitate to contact me,

Best wishes - Brian.

Thanks Brian for the quick response. 

Good to know it will be clearer when we get the letter. I’m hoping Oncology are forth coming more than urology but I suppose it also depends on who you get. For example he told us he has bone mets, we then said where, he said a few places like the pelvis, we then asked for the full list and he wasn’t sure, he started reading the report. 

With the score he said a few were 5 a few were 4 and some were 3 so mixed. But no official Gleason given. 

He said we need an oncology appointment to get a treatment plan but he seemed to think radiotherapy would not be an option, he said that’s more for if it’s contained which is strange because I’ve seen others with mets have it. He said likely path will be chemo but he’s not the expert on treatment and oncology will decide the best choice. Given dad is fit and healthy he thinks there is a strong chance they will throw more at it.

He also discussed moving onto second generation hormone therapy instead as another option but I thought that was if the first option failed. 

was really hoping to feel better equipped to deal with it but the meeting really felt like just confirming what we already knew and now maybe even more lost with what any of this means for dad. 

The letter has just come through and said: Histology from prostate biopsy-confirmed prostate cancer, Gleason patterns 4, 3 and 5 are seen.

Hi CCG.

Good afternoon it's great to meet you today sorry that it's under these circumstances but it's still great anyway & I do hope that we can  offer you much needed help & support.

Your dads diagnosis is very similar to mine which was last June. I was told exactly the same with my cancer being metastatic and also having spread to my bones but which ones unknown!!!!!!

I was told that the consultant couldn't cure me and he could only treat my symptoms.

My PSA came in at (1000+) I was put straight on to Hormone Therapy and within weeks my PSA had dropped to (50) and 12mnts on it's (0.9)

I have also been told that chemo will be my next port of call. The consultant seems very happy with my current treatment plan which looks to be working very well.

Please please let me know if there is anything that I can help/support you with??

Prostate Worrier.

Hi CCG,

My partner has 3,4,5 mix within 20 biopsy cores. I think the problem is the 5 which is aggressive (we were told this) But saying that it would be good if you were told in what mix they were ? I think when a lot of the prostate is involved and every core has it cancer in it, it must become a bit of a mess and hard to score it. I have been talking to someone else about this mix and they suggested they would go by the "mean score" But I don't think that makes sense. I think it's best to go by the 5. But HT will soon bring it down and suppress any activity, so try not to worry too much.

Do you have a PSA? has he been started on Hormone therapy?

* Ahh just read your bio PSA136 I remember now. you are very similar to my partner.

L

I think it's maybe time to be a little proactive and push for the oncology appointment.

You could try the hospital PALS service (Patient Advisory and Liaison Service) Tell them you aren't happy with your Urology Consultant - dad's been passed to oncology and you need an appointment to start treatment.

Ah - your letter has arrived - that should contain a telephone number and possibly an e-mail address - try and push for your appointment.

I have a feeling that the treatment will be "Triplet Therapy" which is the latest way of throwing everything at it. - Here's the link

https://prostatecanceruk.org/prostate-information-and-support/treatments/darolutamide#:~:text=It%20combines%20darolutamide%20with%20both,for%20other%20prostate%20cancer%20treatments

It's early days - once he's been seen by oncology and you have a treatment plan things will settle down. We have all been where you are now and the waiting is the hardest part.

Anything else, just give me a shout.

Best wishes - Brian.

Thanks so much for responding prostate worried and so glad to hear the hormone therapy is working for you. Is it first generation or second?

were you also told that radiation isn’t an option for you? And is there a reason they delayed chemo? Or is it the next step should the PSA rise?

sorry for all the Qs 

Thanks L, this is really helpful to know. They listed it as Gleason score pattern showing 4,3 and 5 in that order. Is it a good thing 5 is last?

Thanks Brian! We have already had contact with PALS but may need to reach out again. Will definitely be proactive with getting the oncology app in asap. Will take a look at triplet therapy. Thanks so much . 

Just to add on to the other posts - second generation antiandrogens are often prescribed as first line treatment to try and really hit the cancer from the start.  Radiotherapy is a targeted therapy and will treat the individual areas. It is useful when the cancer is initially confined to one area such as the pelvis. In your dad's case he has distant bone mets which will probably push towards a systemic treatment plan. Distant mets can be treated with radiotherapy and may be used later on if needed.