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Feeling scared and lonely

Posted 12 Mar 2021 at 23:14

My husband has been diagnosed with prostate cancer three weeks ago he has bone metastasis and pelvic lymph nodes. He came home two weeks ago from hospital following collapse at home. He has a catheter which he is managing. He has lost over two stone in weight. Dr has called tonight he has an hb of 70 and has to have a transfusion next week. We will wait to hear from oncologist next week. He was started on degarelix injections in hospital and is due the second one on 23.3. I barely sleep and am at a loss as to what’s going to happen. His PSA was 3500. Has anyone had experience of any of this 

Posted 13 Mar 2021 at 00:18

Hello Jess1704

I'm so sorry you are both on this journey. It is extremely difficult to navigate the shock and know how to manage. I completely relate to what you and your husband are going through. (see my bio). My husband age 54 was suddenly diagnosed in October 2020 after a few weeks of lower back and hip pain. He collapsed at home and was in hospital for 10 days. His psa was over 900 to begin with and gleason score is 10 with widespread bone  metastisis. He was started on Degralix injections  which he receives every 4 weeks and he is on daily Abiraterone (zytiga). His haemoglobin did drop over a period of 5 weeks but rectified when he responded to both these treatments. Psa has now dropped to 0.1 and all blood markers are now in normal range. 

You will find lots of helpful discussions on the forum. They have certainly been a great source of information and hope to me and my husband. Our local Maggies Centre were great too.

Hoping it goes well next week and sure your husband will begin to feel better soon.

Take care for now. X

Posted 13 Mar 2021 at 00:41

Hi Jess sorry you are here. You will find this forum a good place to share your views and experiences. Just writing things down can really help. Most men do respond well to the initial treatment, so hopefully his quality of life will return. Sadly the cancer evolves and will return, it can be as short as months but can be years.

You will start to be able to sleep again, you will be able to live your life without thinking of cancer ever minute. Even two years after diagnosis I never manage a whole day with out thinking about it, but you will eventually find you go a few hours without thinking about it. 


Posted 13 Mar 2021 at 00:58
Degarelix is used in these cases because it starts starving the cancer immediately - you will probably see the PSA drop remarkably quickly.

The highest PSA at diagnosis we have seen on this forum was 13,000 and he lived reasonably well for 5 years despite a number of serious complications, some of which had nothing to do with prostate cancer. Our urologist says that the highest PSA he has ever seen in a patient was 160,000! It is hard to grasp this when you will see men on here worrying because their PSA has risen above 0.2 ... it all depends on what treatment they have had or are having.

Your husband is what is referred to as hormone naive; once his bloods are sorted, they may suggest adding other treatments to help the degarelix do its job for longer. As Dave has said, the shock does settle and you will eventually find your new normal.

You don’t say how old he is?

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

Posted 13 Mar 2021 at 07:02

Thank you so much for taking the time to reply. My husband collapsed at home too the whole experience has been awful. Your note has made me feel so much better. I’m sorry you are in this situation too but you have made me feel much more positive. Love to you and your husband I hope you both go from strength to strength x

Posted 13 Mar 2021 at 07:04

Thank you for replying you have given me such hope. Everyone in here has been so kind xx

Posted 13 Mar 2021 at 07:09

Thank you Soren for explaining all of that I am so new to this and don’t want to look at google it terrifies me but everything you have said makes sense and is very supportive. My husband is 66 x

Posted 13 Mar 2021 at 09:57

I am so sorry to hear of what you and your husband are going through. The initial.shock and coming to terms with it all, is very tough. There are loads of amazing treatments, and I'm sure the onco team will come up with the best plan for your husband. 

I echo what the others say, you will return to a new normal and find that equilibrium again. Be kind to yourself, you are both probably still in the shock phase. Keep talking on here and stay close to friends and family xxx

'Sorrow looks back, worry looks around, but faith looks up'
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