Making decisions about treatments during cancer care: questions for informed choices

Consultant urologist, Steve Payne has treated patients with urinary tract infections (UTIs) for over 30 years. When his wife, Jan underwent treatment for breast cancer at 63, she was started on hormonal manipulation after her surgery and chemotherapy had finished. Steve noticed subtle changes in Jan’s manner, and she started having severe kidney infections, which gave him a deeper appreciation of the impact that cancer treatment can have on patient’s loved ones and how debilitating these infections could be for the individual. Thanks to Steve’s specialist awareness, and as a consequence of some input from friends and colleagues, they felt that the underlying issue was a lack of oestrogen due to the ‘hormone-blocking’ medication Jan was taking. The couple sought advice from a menopause specialist, changed the medication, and Jan began hormone replacement treatments. They took this course of action with little support or agreement from their cancer care team because it went ‘against the grain’ of the typical management plan following diagnosis of a hormone-dependent cancer. Steve hopes that by sharing this experience, he can offer information and support to other families going through menopause symptoms induced by cancer treatment, especially if people feel like their daily life and their experiences and concerns, are being overshadowed by the clinicians focus on the data and science of cancer cure.

“Dealing with a cancer diagnosis in someone you love is never easy, even when you have a lot of knowledge in the medical field, even when the individual affected is coping well with the diagnosis and treatment and you have a stable, and supportive, family unit. It made me realise how incredibly dependent you become on your relationship with the professionals you see, and for their advice and recommendations about an area of medicine you may not be familiar with. In particular, you are dependent upon them giving you balanced, unbiased information about every part of the journey ahead. Waiting for the next step in your management: the scan, the biopsy, the consultation, the surgery, the histology result, further tests, seeing the oncologist, chemotherapy, the follow up all take time and induces anxiety every step of the way. We were fortunate to be treated by an extremely well-organised NHS unit who whisked us through the process oblivious to who I was, or what I did. However, knowing what to expect, when it’s happening and why, are hugely empowering and alleviate a lot of anxiety during this period.

“Having medical knowledge is a real privilege that means you can help guide your loved one through their journey. Although this is something I have always tried to practice during my career, Jan’s experience made me even more aware of how much doctors need to explain processes, and timescales, in terms that patients can relate to. Stepping back and letting my partner make the decisions she wanted was essential for us as a couple. In our experience, my input was only sought on a couple of occasions, although both turned out to have a fundamental impact on Jan’s treatment.

“When the surgeon discussed the various treatment options with us, he mentioned a breast reconstruction with material taken from the tummy. Having a ‘tummy tuck’ as a consequence of cancer treatment was obviously an attractive bonus to my wife, but as we talked it through about the intricacy of the surgery, the length of the operation, its risks and the significantly extended recovery period became apparent, she opted for a simpler procedure.

“The second occasion was when the oncologist mentioned an additional treatment that we might consider as part of a trial. I knew this drug had many downsides and when I questioned the benefits and complications of the treatment, and asked for the strength of evidence of what benefit there would be, the offer to participate in that trial was withdrawn by the oncologist. This doesn’t mean that Jan hasn’t been involved with a number of trials during her cancer management, she has. On other occasions, however, the pros and cons of those trials were really well explained so that a well-informed decision could be made about putting herself forward to improve knowledge about the management of cancers such as hers. This made me realise how vulnerable cancer patients are to suggestions about treatments and participation in trials, sometimes, perhaps inadvertently, without adequate information.

“Although surgery and chemotherapy were challenging, Jan was very well looked after. She was told that as she had a hormone-sensitive tumour, she would need her oestrogen levels to be supressed, and we were shown plenty of evidence that this would improve her cancer survival. We were told the preferred medication to use, and this was duly started with some indication of the complications that could be associated with the drug. It was impressed on us how important it was to complete the 5-year course of treatment to give her the best chances of a cancer cure, and we were told that stopping the medication early would likely impact upon that outcome.

“Jan began suffering with frequent episodes of pyelonephritis (kidney infections) due to her hormone-blocking treatment causing a lack of oestrogen. The infections took their toll on Jan and made her feel really unwell. We took the decision to stop the treatment early and seek oestrogen replacement therapy instead – the kidney infections stopped. During our dilemma about whether to continue taking the medication, I relooked at the evidence the oncologists had presented about the hormone-blocker drug. Those data didn’t actually stand up to an in-depth analysis as there was no clear differentiation between deaths over time due to cancer, and those which would have occurred anyway in the population at large of Jan’s age. Ultimately, it became apparent that the evidence used to justify their original choice of hormonal treatment for her was neither as strong as they said, nor established enough to validate their advice. The prospect of bias from the cancer doctors had raised its ugly head.

“This experience has made me question whether doctors dealing with cancer are more concerned about their results from treating the malignancy, than the complications or impact on people’s daily lives as a result of the treatments used to achieve their aim.  I believe that ‘cancer cure’– their over-riding objective – sways them to put a positive spin on the treatments they suggest, inducing something called ‘confirmatory bias’. This is when someone interprets information to back-up their own beliefs or opinions.

“We also found that it was difficult to discuss alternative treatment options once we had come to the conclusion that treatment had to be changed. Unfortunately, longstanding attitudes and concepts in cancer management seemed to prevail and anything that could be construed as potentially reducing cure rates was largely dismissed. Swapping to a hormonal treatment plan that had reduced side-effects and starting HRT (including testosterone and the use of local oestrogen) has dramatically improved the quality of Jan’s life. But our decision to do this was construed as one that would ‘promote tumour growth’; it was not condoned and not supported by NHS treatment. We have the ability to pay to exercise our choice, but not everybody does.

“We recognise that cancer cure could possibly be affected by our course of action. We are, however, content in our decision to regain a dramatically improved quality of life, even if it’s considered to be potentially at the expense of cancer survival.”

“Obviously, not every family of someone being treated for a cancer that requires hormone manipulation has the knowledge that I did, or the resources I could call on to help in our decision-making process. However, I think it’s essential that everyone is given the opportunity – and feels able – to ask their care team some of the following questions:

• What are all of the pros and, especially, the cons of treatments or trials that are recommended?
• How long has a treatment been used for, and how widely?
• What are the pure cancer survival rates for me, once the death rates from other causes have been removed?
• What will the consequences of the medication and resulting lack of hormones be on my day-to-day life and activities?
• Can I discuss the evidence of the pros and cons of HRT after breast cancer, for my daily life and wellbeing, and their benefits such as improved bone health and reduction in the risk of heart disease?
• How would starting HRT influence my pure cancer survival rate?

“Asking these types of questions can help you see the whole picture, rather than just being shown a view down the narrow lens of cancer survival statistics. Finding answers, that satisfy you, to these tricky questions can be hugely reassuring when making a decision to proceed with a treatment plan that may feel contrary to the advice you have been given, because there are many health and lifestyle consequences of hormone manipulation that are not very often talked about in cancer clinics. If side-effects do occur following hormonal treatment, having a rigorous discussion with your care team may make it easier to come to an informed decision about what alternative treatment options may be available and may be appropriate for you. Don’t forget, if you aren’t happy with the answers you receive, you can always ask for a further opinion from another specialist who treats patients with the problem you have!”

For more information on this topic you can read our factsheet here or listen to The Dr Louise Newson Podcast episode ‘Yes, I’ve had breast cancer but now I need help with the menopause’ with Dr Sarah Ball here.