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User
Posted 10 Aug 2019 at 16:27

My husband was diagnosed just over a year ago with Advanced Prostate Cancer. He always kept himself fit and for a 70 year old he had never been on any medications so as you can imagine, it came as a big shock. He was given a T4, N1 and M1. His PSA at the time of the diagnosis was 46. He has had all of the treatments offered but none of them have worked. He has also had Enzulatamide but his PSA began to rise and also, he developed a swelling in his groin so the Oncologist took him of it saying it was not working. He has had no further treatments since only steroids once a day. Before all of this, he also developed a very swollen right leg and then a few weeks ago following a CT scan to see what was happening with the cancer, the radiographer picked up from the scan that he had a Pulmonary Embolism so they contacted our local A & E for them to contact him as soon as possible. He duly then was given a blood thinner. In view of this, the Oncologist informed us that at the present time, he would not be strong enough for a different type of Chemotherapy. He was admitted to hospital just over a week ago because his potassium was very high. We were told that both his Ureters were blocked and they thought that both his kidneys were failing. However, he has had a left nephrostomy which seems to be working well but the right kidney cannot be saved. The hospital are now going to discharge him into our local hospital and they have informed us that they can do no more for him and are going to set up a palliative care package for us. They have also informed us that his lymph nodes are blocked and this has resulted in severe lymphodeama which is making his mobility very hard. We are both devastated at this news and feel very very sad at this news because we have been told that nothing more can be done. Any advice would be most appreciated. Thank you.

User
Posted 10 Aug 2019 at 23:17

Oh Double D


I'm so sorry to read your story, sometimes it does go that way and it’s awful. I don’t know what to say but wanted you to know that I’d read your post and am thinking of you.


with love


devonmaid xxx 

User
Posted 11 Aug 2019 at 09:34

Thank you both for your comments. They have said that compression on the affected limb may do something. We were due to go to the Royal Marsden for a 2nd opinion which we were going to pay for ourselves. However, because he has been in hospital we had to cancel. Not sure if it is worth it now. We were going to find out if any suitable trials. We are not going to give up.

User
Posted 11 Aug 2019 at 15:32
Don’t know if this is any help to you, but I requested a second opinion from the guy who seems to be the No.1 prostate cancer oncologist at the Royal Marsden, (and possibly in Europe), on the NHS and the appointment came through within two or three weeks.

We can’t mention his name here, but a Google search should find him. He’ll probably tell you what you already know, unfortunately.

Best of luck.

Cheers, John.
User
Posted 11 Aug 2019 at 21:38

Hi. Do you think it is worth contacting the Royal Marsden again or has the cancer progressed so much that nothing more can be done. Also, would any trials be any good. Thanks.

User
Posted 11 Aug 2019 at 21:52
From the information you have provided, it seems that the most important thing is for him to be comfortable. The palliative care team / hospice staff are usually brilliant at organising everything he needs in terms of equipment, pain relief etc. Massage can be quite dangerous to someone with cancer unless the masseur knows what they are doing but the palliative team may have access to a skilled lymphodema specialist who can do some lymphatic drainage, as long as it doesn't make him worse.

Being so ill, I don't know how he would get to appointments with any of the trial teams, even if he met the criteria. The severe lymphodema and kidney damage will probably preclude him from most of the trials that are available.

Have you had the difficult conversations about his wishes and preferences about the end stage? Getting things in order now, like would he prefer to be in a hospice or at home with a care package, would he want people to visit, would he want to be taken back to A&E if his ureters blocked again ... these conversations are sometimes very hard to start but will make a terrible time more bearable for you both so the earlier you are able to talk about this stuff the less scary it is for either of you. The palliative care team may also have someone who is skilled in starting those conversations with him.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
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