Staging of my prostate cancer

  • 2 replies
  • 35 subscribers
  • 203 views

Background is from Urology Department letter to my GP dated 23/05/2024. I am quoting directly because I may not fully understand what is important:

 

"- Two week wait referral with an elevated PSA of 7.39 ng/ml

- DRE showed hugely enlarged prostate.

- Previous MRI March 2022 showed a prostate gland volume of 114cc with a PSAD of 0.05. There was no significant tumour, PIRADS 2.

- Referred for up to date MRI which was performed on 21st April 2024. This showed 121cc prostate with a PSA Density of 0.06. There are two foci of clinically significant tumour in the right peripheral zone at the neurovascular bundle and left seminal vesicle, PIRADS 5. There is a right pelvic sidewall metastatic lymph node measuring 13mm in the short axis. Therefore, T3b N1 MX multifocal prostatic tumour.

- MRI triage with plan to offer precision point biopsy under local anaesthetic, as well as complete radiological staging with CT and bone scan. Review in MDT.

~ Bone Scan 7 May 2024 reported no evidence of metastatic disease.

- CT scan also performed 7 May 2024 showed an11 mm right iliac external lymph node with no distant metastases noted.

- Planned precision point biopsies under local anaesthetic performed 23 May 2024".

 

I have not received the matching letter from the biopsy result yet but they assessed the Gleason Scale at 9 (used by Broomfield Hospital, which I am attending) which I understand to be CPG 5. There were 31 Cores in biopsy, 12 Positive - 10 Gleason 9, 2 Gleason 2.

When researching this for my own sake I came across the phrase "locally advanced". I have been using these pages:

https://www.cancerresearchuk.org/about-cancer/prostate-cancer/stages/locally-advanced-prostate-cancer

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

https://prostatecanceruk.org/prostate-information-and-support/just-diagnosed/locally-advanced-prostate-cancer

The hospital supplied a "Knowing Your Options" leaflet which, when I input the requested items (CG5, PSA 7.4, T3B) gave me the ollowing output:

"The prognosis from a CPG5 cancer is considered very poor if left untreated. Treatment is strongly recommended to reduce the risk that the cancer may spread (metastasis) or cause death.

The National Institute for Health and Care Excellence currently recommends that men diagnosed with CPG5 cancer are offered treatment with the intention of cure. Active surveillance is not recommended.

This, however, depends on how old you are, your general state of health and your other medical conditions."

The underining is mine - this seems to agree with the information on your website and the others that my version of cancer should have an attempted eradication, followed by control if that was not acceptable

 

I should add that I am feeling mentally fairly fragile at the moment. Half the time I am immediately doomed, and the other half carrying on as normal.

 

My local hospital, when asked, would not use the phrase "locally advanced". They seemed to only use localised or metastatic. When I asked the nurse said "we don't call it that".

 

I have an appointment with an oncologist on 02/07 and I am trying to get my head together for that.

I have been started on Bicalutamide with my first Zoladex injection on 21/06. After that monthly whilst they see how well I tolerate it, follwed by three monthly.

Passing mention was made of radiotherapy, but that is up to the consultant. When asked about surgery (just in case) - "we don't do surgery for this type here".

 

Questions:

 

Is "locally advanced" probably the correct staging?

  

How should I prepare myself to talk to the consultant (See fragile mental state)?

 

If the discussions are not similar to the advice you give me, and I can't understand why, do I have rights to be referred elsewhere?

 

Thank you.

  • Hi mstev2,

    Thanks for getting in touch. My name is Sarah and I’m one of the nurses on the Macmillan Support Line. I hope you are finding our online community supportive.

    Wanting to gather as much information to help you understand your diagnosis is understandable.

    From the information you have given it does suggest you have a locally advanced prostate cancer. As you may have seen from our information T3 and T4 cancers are known as ‘locally advanced prostate cancer’. This can sound scary so it’s understandable you feel the way that you do.

    There are different treatment options and are with a view of a curative intent. This is known as radical treatment and can include either surgery or radiotherapy.

    The best placed people to talk through which is the best treatment option for you is your hospital team. Your specialist may give you the option of either surgery or radiotherapy and ask you which one you would prefer. Making treatment decisions can be difficult for lots of people, it’s worth mentioning if you are being given the option this means that one isn’t better than the other, they are just a different approach.

    While you are waiting for your next appointment at the hospital it might be worthwhile to have a look at the advantages and disadvantages of both surgery and radiotherapy.

    You might also find our information about questions to ask your healthcare team helpful to look at. I would encourage you to write down your questions and add any more if they come to mind. It would also be worth asking the specialist why surgery isn’t offered at that hospital and why they don’t use the term ‘locally advanced’.

    We have information about understanding your cancer rights which I hope you find useful to read. Included is a second about getting a second opinion if this is an avenue you would like to explore.

     I hope this information is helpful, but if there is anything else we can help you with please don’t hesitate to get back in touch.

    Take care and best wishes,

    Sarah (Cancer Information Nurse Specialist)

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.

    Ref: FP 



  • Dear Sarah, 

    Thank you so much for your kindness and advice. 

    I am reasonably certain of the information I gave you, because it is direct quotes from reports to my GP.

    You and others have helped to understand that now I should lessen my worries about labelling, and concentrate on the personal.

    I may well come back you when I know more. Almost by coincidence yesterday I was told that my local hospital had put in additional clinics and I was offered an appointment brought forward to today, from 02/07.

    Your note above could hardly have come at a more serendipitous time.

    Thank you again.

    Steve