I decided a short while ago that I was going to write a book about the experience I had as a relative of somebody with terminal cancer. I feel this could be helpful for carers who are still on that journey. I feel that particularly because I have been reading comments in a forum for carers here in Ireland.
Anyhow, in the introduction of that book I would like to tell my husband's story briefly from diagnosis to the beginning of the Chemotherapy treatment. While I was writing it down, I suddenly realised that there are things from that journey I don't understand. That has to do with gaps in treatment.
So, for example, my husband's PSA started to rise slowly in 2013 and it climbed from 6 to 150 over the course of nine months without any intervention from doctors. Isn't that strange? My husband and I weren't together back then - well, he wasn't my husband back then even - but I think if we had been together I would have gone with him to checkups and questioned that very strongly. The only possible explanation I have for this is that perhaps Chemo was suggested to my husband, he said no and then there was nothing else available that they could do until, finally, Zytiga came along in 2014. I can't ask my husband anymore of course. I can only hope that this is the explanation.
The second thing that strikes me is the delay of scanning in 2016/2017. I think I told you this before. So on Zytiga his PSA was below 1 for two years and then started climing again, first to 3, then to 4, then to 5, then to 7, then to 10, then to 11 and back to 7. I said to the consultant that I would love to get a scan done because it would tell us whether cancer was growing or not and where. He said that as long as Paul didn't have any symptoms and wasn't losing weight a scan wouldn't be necessary. That was in April of last year. And then, in May, when the PSA had jumped first to 27 and then to 89, they decided to do a scan, but the scan wasn't done until the end of June and the results weren't discussed with us until 11 July. Too much, far too much delay if you ask me. By then the cancer had had months to spread into and through the liver.
Also, the change from Docetaxol to Carboplatin took a while. They did a scan after two rounds of Docetaxol, discussed the results with us the following week, and gave the first infusion two weeks later. So, again, more delay and more time for the cancer to grow.
Also, on that subject, I am asking myself: Why didn' they put him on Carboplatin straight away when they knew that they were dealing with liver mets here?
I don't really want to go back to the hospital and request Paul's file. One reason for this is that I am trying to get work in that hospital at the moment and I think when I arrive five months after my husband's passing with such a request they will only think that I can't let it go or something like that and might feel that therefore I am not fit for the job there. But also I don't want to do it because I feel that I should really let it go because nothing I do or find would bring my beloved back to me. And yet, it's nagging me this question of "Why?", particularly where 2013/2014 is concerned. Why would you let the PSA climb to 150 before you suggest to take action? As I say, my only explanation is that it was because Paul didn't want Chemo and that there was nothing more they could do.
What do you all think?
Mel.
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MelaniePaul
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I think you will feel empowered (and better informed) if you ask for copies of the charts, scan, tests, progress notes, etc. the hospital hr department should see that as you exemplified as a strong advocate, which is a positive. Also, it seems unlikely that hr will ever know about your request. Of course, no guarantees
Yes, I think it would be good to get his file. For what I don't really know. Maybe it is a bit mad. But I feel that I would like to know the things from that time that perhaps I didn't know or didn't understand back then or didn't want to hear or whatever. Yes, as you say, I may feel more empowered. I will have to think about it a little more.
Mel.
You could find on the past forum posts some answers to the question "What do you all think". Those posts and replies were made during your husband's treatment so they would be more valuable than any of us looking back from memory in my opinion. You shared a lot of what was going on and we all appreciate your openness. I hope that you will find peace.
When I am reading your post, I am getting the sense that you are saying: Try and let it go, because we were all with you during your journey, many of us gave our opinion and comments, and perhaps it is time to let it go now. Please correct me if I am wrong.
If this is what you are saying, of course you are right in a way. It wouldn't bring him back to look through all the results again. And yet, it could be interesting.
I suppose, though, the best thing is to believe that everyone did the best they could at the time, including myself as his carer, and that he is no longer suffering and at peace and therefore the best thing is to let it go.
I'm not saying it's time to let it go, only you can know when it's time. I think there is a process we go through. Going through everything that happpened might be part of that for you.
I know for myself, it's easy to go over past treatment decisions and question whether they were the right ones, but as you said: everyone did the best they could at the time.
The problem is that he had an aggressive form of prostate cancer and once it goes to the liver, the prognosis is not good for anyone. I wish we had more and better treatments, but it's fairly limited with aggressive disease.
I believe that you did do all that anyone ever could do for Paul. Your love for him is obvious and will never end.. Who are we to tell you anything? . Go thru grieving but celebrate the love that you shared.. Take care of self .. Scott..
Hmmm, sounds like malpractice to me! After surgery (failed), salvage radiation (failed), 18 months of ADT, six cycles of taxotere and 25 more radiation treatments, my PCa is undetectable.
My urologist and I agree that when it returns, we will get a few PSA readings to determine doubling and velocity time, then image with the Aximum scan somewhere around PSA 1.5-2, armed with that, decide on treatment. He said he would never let PSA rise above four in a patient with recurrence without recommending some form of treatment.
Well it's difficult for me to advise you on what could have been done for Paul in a more timely manner, however I do like your idea about writing a book about your experience as a cancer carer. You would do a world of good for present and future cancer carers. Bless you for caring for Paul during his fight with his deadly disease. Paul is looking down at us and telling us to be brave and that life after death is just heavenly.
It might satisfy you quest to get copies of all the records and have a different hospital medical consultant review the records. Once you receive the opinion of how the medical care was handled you could deliver all the information to the hospital's Risk Management Committee OR hire a lawyer to sort it out. Outcomes of the Risk Management are normally not released.
I have instructed my wife to have my autopsy at a different hospital than the one that was treating me.
If it will help you find peace then it might be good IMO to ask for copies of Paul’s previous scans, tests etc and ask his doctor why there was delay in treatment in 2013/2014. I am looking forward to your book as Im sure many of us carers will learn a thing or two from your cancer journey. So go for it and all the best!
As you are in Ireland I thought I would reply. I had two PSA tests earlier this year which had increased slightly from 3 to 4.04. I understand that this is considered low and I had little or no symptoms. My Dad however died from advanced prostate cancer many yeas ago and to put my mind at rest I decided to pay for an MRI myself. This showed cancer that had already spread outside the prostate and was in a lymph node. Gleeson score 8 which is considered aggressive. The consultant I met in a public clinic said he would not do anything until I had a biopsy, bone scan and CT scan. On the public system it takes 6 to 9 months to have a CT scan done. I again paid for it to be done privately. I have no doubt if I had not pushed them or had to wait the Cancer would have spread further. I’m not sure if your husband was in the public system in Ireland but if he was it might explain some of the delays. I was advised to go to the local public clinic because of the way cancer treatment is arranged in centres of excellence. There did not appear to be many outside of the public system that had the same experience.
Sorry to hear about that long of a wait for scans.. Time is critical ..
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