My husband has been fighting this disease for 8 years now. He has had all the treatment he can have, and now has been, I think, abandoned. He has had 2 face to face consultations in the last 16 months. This morning he had a telephone consultation, which confirmed the tumours in his lymph nodes are getting bigger, tumours in his vertebrae are becoming more active, very fatigued and psa has gone up considerably. The doctor has said it is up to him if he has more scans. Next telephone consultation in 3 months. I feel that we have been abandoned. Has anyone else experienced anything similar.
Hi Northern soul fan and welcome to the online community
I'm sorry to read that you feel your husband has been abandoned by his consultants. I don't know if what they've proposed is normal for people with prostate cancer as I had a different type of cancer.
I hope you don't mind me suggesting that you copy and paste your post into a new post in the prostate cancer group, which I can see you've joined, as there you'll connect with others who have this type of cancer. If you'd like to do this clicking on the link I've created will take you straight there.
Wishing you and your husband all the best
What is a Community Champion?
I'm so very sorry to hear of your husband's illness and what appears to be sub-standard treatment.
I am also in a similar position in that I too have only had 2 face to face meetings in the last 15 months or so. This is primarily due to the Covid restrictions imposed on the hospitals which is understandable although I do find that the telephone consultations are almost a waste of time. I don't think that extra scans are the answer unless they are coupled with good sound advice regarding alternative treatments. I would suggest that you get in touch with Macmillan Support or the senior cancer nurse at the hospital as direct contact can be reassuring.
The consultants appear to be dealing with so many patients that sometimes I question whether I am actually being given the best treatment available. It is impossible to get a second opinion which, ideally I would like.
Don't accept the current position if you are not happy as both you and your husband will feel a bit better if you ask some important questions.
I know that my comments will not be of great help but I truly hope that you resolve some of these issues.
Very best wishes,
Pardon me asking this, was he offered radium 223 ? Or has he had it already. I don’t know who you can ask, there are a number of treatments out there, has he been offered a trial ? Just throwing suggestions.
Eight years he’s been battling well, I’am coming up to my fifth I certainly hope you get some answers, the best way is to be a pest, the Doctor usually has a secretary, keep pushing.
Yes he has had 10 chemo sessions, Zoladex every 3 months, radiotherapy, radium 223, arbiterone and been on the vision trial. Radium 223 caused the cancer to spread, and caused 4 vertebrae to collapse, which has affected his mobility. This is quite common when having radium 223, which was not explained to him.
I agree he ne Ed’s to be a pest.
Sorry to hear about your OH predicament. Iike your OH I have had all the treatments including R223 and at no point was I told that R223 would increase the PCa. I just competed my 6th cycle and whilst my PSA rose to 26 from starting point of 5, I was told that the therapy worked in reducing the phosphate levels in the bones. Not once did they mention cancer spread due to the therapy, what they said was the therapy would help with pain relieve and pressure in the bones. Just wondering who told you the cancer has spread, as I've started to get quite a bit of muscle cramps just now but told it's nothing to do with R223. I meet up with my Oncologist tomorrow for a follow up.
This will be my 6th year since diagnosis.
Hopefully your OH can get answers to his questions and like someone else has said keep banging on doors and demanding answers.
Shortly after my husband had had a few cycles of Radium 223, he developed severe back pain. At first the oncologist said it could not be the cancer, but unfortunately it was. 4 vertebrae had collapsed. The oncologist then said that sometimes the cancer can spread whilst undergoing the Radium 223 treatment.
I will keep banging on the doors, but because of COVID, life has become more difficult.
Gooad luck for tomorrow.
Yes Covid has messed us all up. Hopefully things can return back to some normality soon. Even trying to see a GP has become impossible even though they say that they are there for you. When nothing is happening it just seems a lost cause and I too have felt neglected in the past.
Thanks for the luck tomorrow, I've had pain all over since November. Muscle cramps big time and have been told that it wasn't the R223 but I'm going to ask my oncologist that question tomorrow. My GP is stumped and hasn't a clue where the pain is coming from.
Really sorry to hear your situation as it must be really demoralising for you both. Its hard to put things into words but try and be as strong as possible.
Again take care.
My partner has followed the usual route and is taking Radium 223 at the moment. It is in his bones but not yet in the organs. Not sure how long he has left, but is in constable pain at times and uses the use of his legs for some reason?
I am so sorry to hear of the situation you find yourself in. Like me I think you feel helpless as unable to do anything. My husband is sleeping a lot, and lost his appetite. When he told the doctor on the phone, he was told this is the cancer. If only they would explain to him and myself what to expect, it would be so much easier. I don’t think they realise how stressful it is, not knowing.
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