Feeling Terrified

 hugs. 

Hello Virgo Babe and welcome from another Virgo Babe. If you are anything like me then you want to know every minute detail but can also be a bit of a worrier as we like to be in control. My husband is T4, diagnosed in July 2020 but he doesn't have bone mets. Is this a standard maintenance scan or is there a reason why your husband has been sent for one at this time such as a rising PSA? My husband has regular 3 monthly scans because of his type of prostate cancer and it is always an anxious time waiting for the results. Distraction and treating ourselves to an ice cream or coffee out helps. Please let us know the results and, of course, ask any questions you like - we are a friendly bunch.

He’s only had initial scans for diagnosis then his PSA raised at the last appointment and was told then that they like to do yearly scans so not sure if it’s a coincidence or delayed yearly scan.  

Hello Virgo Babe 

A warm welcome to the Macmillan Online Prostate Community, although I am so sorry to find you here.

Virgo Babe said:

Feeling anxious on impending new  scan results

I think this is a natural rection we all get when results are due. Do you have a local "Maggies" -this is a Cancer charity for the whole family where you can drop in, have a cup of tea and a chat and ease any worries - here's a link to find your local "Maggies" - https://www.maggies.org/

If your local hospital has a Macmillan Centre they can offer you some help with your feelings or give our support line a ring on 0808 808 00 00 (8am to 8pm 7 days a week), they can help too.

Feel free to post any questions on here - however trivial, you well get answers.

If I can do anything else for you please don't hesitate to let me know.

Kind Regards - Brian.

Hi. It sounds as if your husbands rise in the PSA has triggered the reminder that they should have done the scan. Do you have the last 2 PSA's?

My husband was diagnosed in March and I must say the group are wonderful . I have ranted , been broken hearted and someone always replies . Huge hugs to to both and hope all goes well .  Keep in touch and ask questions / rant /  just talk . 
Liz & OH xx

Thank you everyone for your kind words of support and encouragement.   

Results day was mixed, some areas the disease has reduced and in other areas it’s increased so quiet challenging in terms of to make a decision of what to do next.   PSA has increased but still apparently relatively low.  In real terms it means disease is not responding to Apalutimide anymore.  

Advised got 2 options as decision has been made to stop  Apalutimide.   

1. docetaxel chemotherapy given to patients that are symptomatic, my husband is not symptomatic at present 
2. Other option is to wait with follow ups so would see in 3 months and keep checking PSA.   As in the clinical trials docetaxel was only given to men that was symptomatic of the disease so basically watch and wait and see how got on and then start.

Anyone else had this dilemma, how did you come to a decision.     We go back in 3 weeks.   

Hi Virgo Babe , sounds a bit mixed but positive in that next treatment proposed.  Your OH diagnosis is similar to mine (although we are all different in the way we respond etc). I presume by saying he is not symptomatic you mean he is in no pain?  I was in that position and had Docetaxel although at that time bone mets had not been found.  Personally from what you have described I wouldn’t want the watch and wait but would opt for the go hard at it, but that’s just me.  Good luck with your decision,please come back if you need any help.  David

Hi Virgo Babe .

A couple of questions. What is your husbands current PSA. If it is 0.4/0.5 or above then I would push for a PSMA PET scan which could pinpoint where the problem is. It would also guide the experts to whether Lutetium 177 might be a possibility in the future. One of the criteria for having the Lutetium 177 is normally that you have already undergone chemotherapy and second generation antiandrogens has failed, unless it is on a trial basis. The difficulty can be that the radiotherapy continues to work for 18+ months so care has to be taken when interpreting data in this area but it should show up other mets in the body and would also tell how well the hormone therapy has been in keeping things under control. It should also give an indication of how sensitive your husbands form of prostate cancer to radiotherapy. My husband is asymptomatic (without bone mets) but he did have 6 cycles of Docetaxel - it kept things at bay for a about 6 months but it is possible to have Docetaxel again at a later date, or a different type of chemotherapy. In his case the cancer is very radiosensitive, but not so chemo sensitive although it did work for the average time, however , for some men it can work for a lot longer. Chemotherapy is not an easy option for some men, but others sail through it relatively easily.

The radiotherapy - where was it directed - I presume just at the prostate with 6 sessions x 6Gy?. If this is the case then it might be possible to have a more targeted radiotherapy to the lesions which show up on the PSMA PET scan but in the UK there is a limit to the number they will treat. 

I have a video which I usually go to to find out what is available at different stages of advanced prostate cancer.

https://youtu.be/-RVVq0uDAEE?si=03UlkoF3dz3J411P

There are more tools in the toolbox as you will see from the video such as Radium 223 which is specifically for bone mets. Beyond that there is the possibility of PARP inhibitors, immunotherapy.

Another question - has he been advised to take something to help the bones like Biphosphonates or Denosumab alongside calcium and vitamin D supplements? 

My husband went back after the 3 weeks of what shall he do/do not do ….The consultant fully explained and thankfully took the very difficult decision out of my partner’s hands.   Whilst my partner has no symptoms the trigger to having the scans were the start of an increase in his PSA levels.  They are still relatively low but it was a sign that Apalutimide was no longer working which the scan results have confirmed, therefore Apalutimide has been stopped with immediate effect.    

So the next course for treatment would be docetaxel chemotherapy.  Advised there is no benefit whatsoever in starting docetaxel because it will affect his quality of life and advised will continue closely monitoring for symptoms and then will offer chemo which will be weekly chemo sessions on a 3 week on and 3 week off for 10 cycles.

He came to this decision because he said my partner is not on a curable pathway and only has 2 treatment pathways for his diagnosis which are both chemotherapy with no guarantee of being effective so whilst he’s active and a has a relatively good quality of life it’s better to delay because in the future they may be more pathways become available.   

It’s a very nervous position to be in as it’s like waiting for things to get worse but on the other hand it’s enjoying quality time now before the treatments restrict quality of life.

Has anyone else been in this position and how did you get your head round it.