Feeling scared and anxious

Hello JaneB  A warm welcome to the online Prostate cancer Community although I am so sorry to find you here..

Just reading your story, I can well understand how both of you are feeling, you have been "through the mill" and are still in a "hard place".

The best two pieces of advice I can offer are:

* Do you have a "Maggie's" near you. These are drop in cancer support centers for the whole family. To find your local Maggie's 0300 123 1801 or www.maggiescentres.org

* Give our support line a ring on 0808 808 00 00 (8am to 8pm 7 days a week). They will be able to point you in the direction of extra support.

There is help available but you do need to contact the Support Line.

We do have another forum where you may find some help and advice in helping to care for your husband and here's the link-

 Carers only forum 

Just click on the link I have provided and once the page opens up, click on "join" at the bottom of the page and then you can introduce yourself in the "New Here - Say Hello" section.

I am sure after reading your post there will be may other messages of help and support from other Community members. If there is anything else I can do for you please let me know.

Best wishes - Brian

Hi JaneB

Good afternoon it's great to meet you today but sorry it's in these circumstances but never mind as you have come to the right place for help/advice/support.

Yes I was also diagnosed with Terminal Prostate Cancer last June with a PSA off 1000+. This was a huge shock at the time with an initial recovery fairly bleak!!!

Since then I have been taking Hormone Tablets which seems to be working currently but for how long I don't know???

I can understand fully where you are both coming from as it's a very scary place to be in to be honest.

I do wish you all of the best & my heart goes out to you both. 

I can see that you have already had some excellent advice and support. Hopefully you will receive further information from more of our members.

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

Prostate Worrier.

Hello JaneB .

We haven't 'spoken' before but I see that you had a lot of good advice and support over a year ago. Having read your story it echoes the journey that my husband and I are on. You have to respect your husband's decision not to tell anyone his diagnosis but it must make it doubly difficult for you if you need support. Just reach out to this community, as you did before, and plenty will listen. My husband was diagnosed in July 2020 with an aggressive form of prostate cancer which had metastasized to distant lymph nodes plus an area behind the pancreas, but so far no bone involvement. Prostap and Bicalutamide worked for 18 months alongside EBRT to the whole pelvic area. Next was Enzalutamide for 18 months, then 6 cycles of Docetaxel which he completed last October. After recurrence in the distant mets in February he has now completed 5 cycles of SBRT a couple of weeks ago. In his case the cancer is responsive to radiotherapy, but not so much to Chemotherapy. For other men chemotherapy proves very effective, unfortunately you can't predict which treatment will work as everyone's cancer is different. When hubby had chemotherapy he felt rough during each cycle but things had definitely improved about a month after the treatment had finished so light at the end of the tunnel for your husband on this front. We have already had discussions with our oncologists as to 'what next'? Their response was that there are more tools in the toolbox dependent on where the spread is. If it is the bones then Radium 223. If it is elsewhere then Lutetium 177 next. In the meantime genetic testing is being carried out to see if that route could be possible. There is also immunotherapy and finally a different form of chemotherapy. Targeted radiotherapy is also proving effective for bone pain as well as other mets. One tool in pinpointing where the mets are is a specific scan called a PSMA PET CT scan, but it is recommended that the PSA should be above 0.2 to have it, but preferably above 0.4 as this gives more accurate results.

My way of coping is by researching the 'what next' options but also by interacting on this site where the support has been fantastic. I do not live in the UK so don't have access to a support network in the same way that the UK has. You have to find the support mechanism which best suits you, whether it is writing your feelings down, talking to others or just by venting on here. No matter what, we understand how difficult it can be at times. Our other strategy is to enjoy each day as it comes and treat it as a bonus by going out for a coffee or an ice cream, pottering in the garden (I'm afraid housework is frequently abandoned in favour of something else). It must be difficult for you at the moment because of your husband's bone problems which must really impact on both your quality of life so really hope that something can be done surgically for him.

Please keep the dialogue going, whether it is about treatment, a vent or just a chat. We do often go off piste and can have quite a banter about anything that takes our fancy or which gives us a laugh.

Thank you for all your advice Brian

Thank you 

Thank you. It’s good to know that there are possibly other options of treatment. Having hope is really important.