Diagnosis changed

Sorry to hear this. I hope that alternative treatment can be found that works for your husband. 

Finished chemotherapy in January and tentatively waiting my first blood test I know there's other treatment available so hoping you don't need to start thinking how long. 

It's a question I sometimes ask myself when it comes to it do I want to know timings or would i prefer to take each day a blessing without seeing my best before date approach. It's like pandora's box questions like that cannot be unasked

Hi LouLou70,

Thanks for getting in touch. Welcome to the Online Community. I see you joined our Prostate Cancer group today too. I hope you’ll find it to be a good source of information and support.

I understand that you’re worried about your husband, John and what to expect as his condition progresses.

Firstly, I just want to acknowledge how difficult this must be for you. As John’s wife and main care-giver, naturally you want to know what’s happening so you can make plans for his care and support him in the best way that you can. I appreciate that this is not easy when John is reluctant to ask questions about his condition or prognosis.

As frustrating as this is for you, it’s important to be aware that John is dealing with things as best as he can. There is no right or wrong way for him to feel right now. Being told you have an incurable illness takes time to get your head around. There may come a time when he feels able to have an open conversation about what to expect. Then again, he might never feel ready. The most important thing you can do for John is to be present and support him as best you can. It’s so hard when all you want to do is help him and he doesn’t want to be told what to expect. Be honest with him and tell him why you need to know what you’re dealing with.

Regarding John’s advanced prostate cancer diagnosis. Feeling more tired, general aches and pains and an increase in PSA would normally indicate that his cancer is progressing. What this means is that John’s symptoms may need to be reviewed more regularly by either his own GP or by the community palliative care team.

If John has not already been seen by the Community Palliative Health Team (sometimes called Macmillan Nurses), he can ask his GP to make a referral.

The Palliative Care Team specialise in managing pain and other symptoms. They are also experts in giving emotional support to patients and their families. Palliative care nurses may be based in hospitals or hospices and work closely with other healthcare professionals to provide support. They can often visit people in their own homes.

They usually call or visit you regularly to see how you are and make sure any symptoms are being managed. For example, they can advise you about which medicines to take if pain is a problem. They may also be able to tell you about certain financial benefits you can apply for. They can refer you to any other services provided at your local hospice

I know John’s had chemotherapy and hormone therapy already and radiotherapy is not an option. Some people can be given palliative chemotherapy to slow the progress of the cancer. However, this will depend on whether the person is fit enough and if the potential benefits outweigh the possible complications. John’s consultant will be able to discuss whether any other palliative treatments can be given.

The most important thing is that John’s symptoms are well managed. If he hasn’t already done so, I’d strongly advise him to contact his GP and/or hospital team to make them aware of how he is feeling. If he has general bony pain caused by the spread of the cancer to his ribs, spine and pelvis, he may be prescribed painkillers to make him more comfortable. Alternatively, if he’s already taking painkillers, the GP may want to review these if they’re not helping. Sometimes, bone strengthening medications can help too.

I hope this has been helpful. Please don’t hesitate to get back in touch if we can offer any further advice or support.

Best wishes

Deborah, Macmillan Cancer Information Nurse Specialist

Hi LouLou70, has John been offered Abiraterone or Enzalutamide in addition to his standard hormone therapy?

Alternatively the doctors might consider Cabazitaxel chemotherapy.

Best wishes,

Sorry to hear, my husband is currently in a similar position, having had prostate cancer for over 10 years, has had radiotherapy; bracytheraphy, hifu, nanoknife; arbiraterone, radium 223 not suitable for enzalutimide: oncologists feel that chemotherapy not suitable either. Recently had 2 blood transfusion but doctors feel they do not want to give anymore. Genetic. Testing came back that no more available options either: my husband has been strong and hasn’t wanted to know his prognosis. I think this has kept him going. Four weeks ago I was told that he would no longer be with me but I have been caring for him at home, everyday some little problem arises, either jerking in his leg, pain in his back, urine infection but still he soldiers on. He hasn’t been able to walk or even sit in the wheelchair for over 4 weeks now. My advice is just make every day count, no one but god can say how long he has left and like you I also wanted to know but every time I think the journey is near the end, he seems to find the strength from somewhere. Sounds like there are still options for treatment available to make things a little better. Keep strong for the fight ahead because he is going to need you every step keep asking questions and research treatments. If you can travel the London hospitals have many clinical trials

They have said the next set of treatment will be a different chemo to the one he has already had but they are having to delay it due to the virus.

I am sorry to hear about your husband ,my heart goes out to anyone who is affected by this disease in any way.My husband is amazing the way he deals with it every day leaves me In ore of him.I will be at his side no matter what and we will make everything count .

my prayers are with you x