Frustrated and concerned re treatment delay to date

User

Posted 29 May 2022 at 09:24

Hi everyone...I am so frustrated at the lack of urgency regarding my husband's red flag pathway to date. As when I read other members posts with similar diagnosis to my husband's it is leaving me very upset and somewhat despairing of the situation It It just seems an unreasonable time delay, firstly getting investigations done then waiting for results thus further delaying any treatments which will have an adverse effect on his prognosis. I recently posted our journey so far regarding husband's recent diagnosis of Prostate cancer. To recap he is stage 4 with 2 pelvic node and para aortic lymph node involvement also seminal vesicle spread and left pubic bone mets. THE Urologist did talk about Oligometateses at last appt. On 29th April And radical treatment was briefly discussed in view of this. Ie chemo/Radiotherapy. Still waiting

HIS 1st. PSA was 48 in Feb 2022 as undertaken due to 4 months of urinary symptoms. This is his investigation journey to date.

Psa on 23nd.Feb 2022 was 48

Private consultation 03rd March as would have had to wait at least 4 weeks on NHS even though RED FLAG.

MRI on nhs 13th . March

CT scan 22nd.April

Bone scan 23rd. APRIL

PROSTATE BIOPSIES 29TH April!!! And this was only because of bone scan result as was told initially it could be end May begining of June. Needless to say we were despairing at this stage.

Commenced Bicalutamide on 29th.April pist biopsies.

Commenced Decapeptyl injection 6th.May. apologies for drug spelling.

MDT discussion finally 19th. MAY as apparently only 1 Oncologist was present the previous week.??

Finally 1st Oncology appt. Is for 1st. JUNE WHICH IS 14 Weeks from his Psa result. We live in Northern Ireland so just very interested in members feedback re same. As feel we are behind the rest of UK regarding this situation.

REGARDS

ANNA username CARA

User

Posted 29 May 2022 at 13:25

Hi Ann,

It is really frustrating as I know you will just want all the treatment to be done now.

I’m no expert but my understanding would be that treatment has already commenced with starting the bicalutamide and decapeptyl. Although it’s a worrying time these drugs will already be working to suppress your husbands cancer. I also believe they like you to be on HT for a good few months before RT commences as it can make it more effective.

My husband was diagnosed in July 21 and has his surgery in the December….so I can completely understand how you are feeling as we were really anxious just to get it done. He had started bicalutamide in the July though and had prostap injections so that was hopefully shrinking the cancer in the meantime. He had cancer in one pelvic lymph node and they removed 14 during the operation.

Has he has any PSA tests since Feb?? It might just put your mind at ease if you can see the HT is working and PSA has come down. I got in touch with his gp and explained our anxiety and they did a test which was good news.

User

Posted 29 May 2022 at 17:25

Hi Ann

Also in NI here and I know what you mean. My Dad had his Urology apt constantly cancelled and held back for months even though he was red flagged.

He finally had his consultation in Feb and got his MRI shortly after which confirmed what consultant said he could feel already, and then he was told it would take at least 3 months for a biopsy! We went private and finally got it on 6th May. Again we were told it would take weeks for results but thankfully with private consultation we had them within 10 days and we found out he had Gleason 5+4, T3b.

Decided we couldn’t wait weeks for the Oncology apt needed to refer him for the CT & bone scan on NHS so we paid for him to go privately again and he then referred him and he just had his CT today.

I dread now how long we have to wait on these results and still no date for bone scan and no word of NHS consultant… we don’t even know who it will be. We were told todays results would take a number of weeks.

How long were your CT results?

User

Posted 29 May 2022 at 22:22

Hi KTR2...I fully appreciate your frustration as like myself it is very upsetting when you are waiting for results. My husband had his ct scan on 22nd. APRIL and we only got the result on the 20th. May following MDT meeting the day before. MIGHT I add this was only when I did a followup phone call with the Urology specialist nurse.. Simply unbelievable as to why medical staff do not carry out a simple phone call to my husband re ct result when they receive the report.!!!.

User

Posted 29 May 2022 at 22:31

The waiting is just the worst, my Dad is my world and I just want this all to be ok.
I am so sorry you’re going through this with your husband too.
How is he feeling on HT?

User

Posted 29 May 2022 at 22:35

KTR2 I should have also mention that you should contact the appointments or booking centre at the hospital that your dad was referred to by your gp as they will be able to confirm who your dad is allocated to consultant wise.if no joy with this then insist that your gp finds out on your behalf. Unfortunately the red flag system for patients seems to be malfunctioning in NI due to undefunding/mismanagement and sheer lack of commitment by our so called elective MP's and trust managers right up to the upper echelons of the DOH. Also it would appear that our overworked gp's, consultants and nursing personnel have become resigned to accepting things the way they are which in itself is not very reassuring when you have a loved one with such a serious diagnosis and outcome. Regards

ANN username CARA

User

Posted 29 May 2022 at 23:30

I think that you have the wrong end of at least one of the sticks. Your husband had a high PSA in mid to late February and his treatment started on the 29th April. I would say that 2 months from initial referral through a complex set of diagnostics to treatment commencing is a good result.

Re the point about medical staff making a simple phone call. It really isn't that straightforward- the radiographer, radiologist, path lab can all present findings but it then has to go to a multi-disciplinary team meeting including urologists, oncologists, etc where everyone looks at the results and agrees the diagnosis.

If Ann is your real name, it might be a good idea to change it on here as we do occasionally get trolls and spammers. Not sure what you mean about Cara?

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

User

Posted 30 May 2022 at 00:42

Thanks LynnEyre for your reply. Just to verify my name is Ann but as I have only recently joined the forum I thought I had to give a username as well on the initial registration form online hence CARA.

As regards The MDT role I am aware of same and the need for all investigations to be discussed regarding diagnosis and best treatments for my husband. However it would have alleviated much anxiety for my husband and myself to just know outcome of ct scan result as we were very worried about further spread. Regards

ANN

User

Posted 30 May 2022 at 10:01

Okay - the option for a username is so that people can't see your real identity so somehow your real name and your username have been swapped. It might be wise to just delete your surname - if you can't do it, the moderators will be able to help you.

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

User

Posted 30 May 2022 at 11:36

Thank you lynnEyre..I am actually in the process of doing this. Take care.

ANN

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