After having lost the love of my life to cancer in spring of 2018, I want to share some reflections on what I have learned in the role as his carer, and on my grieving process. I hope this blog will be of help to some.
Before I continue telling our story, I want to share a thought I am really passionate about: Scans for patients with any form of advanced cancer have to be performed every six months. It is not right to only perform scans when the patient has developed symptoms or when specific tumor markers have gone beyond the normal range. Many tumors would be discovered a lot sooner, and in many cases they would be much more treatable, and maybe even lives could be saved, if our health service introduced this practice. And if I knew how, I would certainly campaign for it with everything I have.
You see, my husband was feeling quite unwell all through the spring of 2017. This is why, when we had the appointment with the oncologist who told us that Paul's PSA was at 7 again, we said that, although it was quite low, we would prefer getting a scan done to make really sure that everything was okay, but the oncologist refused saying, "When the person is not in pain and the PSA is low, we don't have to do a scan." And that is simply not true. Two months later, when my husband had a scan because now the PSA levels were so high that even the hospital got worried, he had extensive liver mets. And, even though I am not saying that the end result (meaning him having to have Chemo and eventually dying from the cancer and Cemo-related infections) wouldn't have happened, what I am questioning is: If the liver mets had been discovered earlier, would they have been easier to treat and perhaps with less Chemo because they would still have been smaller? It is something we don't know, but it is possible, and it really annoys me that the oncolgist didn't do the scan when we asked for it.
Also, though, I think that as patients or relatives of patients we have to become stronger in saying what we feel we want to get from the oncologists. If we feel a scan should be performed, or if we are unhappy with what they are telling us, or if we don't fully understand what they are saying and why, we have to ask. It is our life we are talking about, our bodies or the bodies of our loved ones that are sick, and we have to have as much knowledge as we can.
I just felt the need to make these two related points here before going back to Paul's and my stor.y.
First off, I am so sorry to read your story.
It's so difficult when you feel like the doctors have failed you.
My mum has stage 4 cancer, and has been told she won't be having anymore 6 month scans, and I couldn't agree with you more. They are so so important not just for monitoring the situation but for maintaining peace of mind for everyone involved. Mental health seems to be completely forgotten about with the big C. Between scans both me and the family suffer from major anxiety. Scans are positive in so many ways for everyone involved.
I think the issue is that if everything is seemingly stable, the scans can sometimes trigger the cells to grow as they are radioactive. At least that's how it's been explained to us.
But I agree with you completely, we all need to be upfront with the level of care we expect and deserve.
Again so sorry for your story.
This topic plays on my mind and I have debated the point with both my GP and oncologist.
The GP said the outcomes are the same, did he mean we die?
Obviously people with secondaries will die, eventually, but that is going to vary massively as to when and how they're discovered, a small individual tumour can be cut out, as you say, significant spread reduces options and makes successful treatment less likely, when the criteria for 'success' is we may not be able to cure but we can prolong life and improve quality of life etc.
He said he didn't mean that, he said it was more about the timing for commencement of treatments doesn't affect the overall survival stats.
Because, if you are the NHS, dealing with millions of patients, we're statistics not people, right?
Apparently the average for survival for breast cancer secondaries is two to five years, hence two and a half years, and that doesn't vary if you start treatment the instant the mets are found or 3 to 6 months later, because the treatment is to alleviate symptoms rather than cure.
I suppose I can see that point of view.
The line they sell us is that it's down to us to be vigilant and if they scan us once a year, the scans are clear, but we convince ourselves nothing is wrong, because the scans were clear, then we may not trust our instincts to get another check.
But, I had no symptoms, or rather i didn't have classic symptoms, what's the chance of me recognising secondary symptoms ???
During my treatment i got involved with the debate on whether or not NICE were going to approve Kadcyla and my oncologist admitted she would have more option available if I had had private healthcare and I investigated whether I could sign up once I'd been given the all clear, so that IF / when I suffer recurrence or spread I will have access to these greater options and that's what I've done.
I had to complete two years without any investigations then I'm covered, as I understand it, and that's June .
The eye opener came when I announced this to my oncologist she immediately arranged some scans to give me a overall picture of my state of health without batting an eyelid. Suddenly the debate about it being down to me to be vigilant vanished.
I was also told categorically that breast cancer patients should receive ultrasound as well as a mammogram but the hospital won't book it unless you specifically request it, because of staffing shortages.
What my oncologist did say was not to hold out for the two year anniversary if I felt unwell or exhibited any of the symptoms, I promised I wouldn't.
I hope sharing your story with a wider audience has perhaps helped a bit, I find talking things through with people who understand is quite therapeutic
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