Forum Discussion

jennyss's avatar
jennyss
Member
6 years ago

More research needed into side-effects of chemo and hormone therapy

In our BCNA network, many members report unexpected, painful and ongoing side-effects during and after chemotherapy and hormone therapy; for example in a recent discussion on ‘hormone therapy and tendon issues’. Sometimes treating medical staff  seem to be unsure about causes and best treatment for side-effects. 

I read a study 'Incidence and severity of self-reported chemotherapy side-effects in routine care' (https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0184360#sec013 ) This study reports that knowledge about side-effects comes largely from clinical trials. There is little evidence coming from normal clinical care.

 

In this study 449 people with breast, lung or bowel cancer were interviewed and asked questions about their side-effects.  The study found that “3/4 of individuals undergoing chemotherapy in NSW will experience multiple side-effects during their treatment, and for over 60% this will include a serious side-effect.” The study found that side-effects were similar across the three cancer types.

The authors suggest that “this information is useful for both clinicians and policy makers, who typically make treatment and funding decisions for standard practice, but often on the basis of potentially unrealistic clinical trials. This work also confirms the need for side effects to be collected using patient-reported methods, to be monitored throughout chemotherapy treatment, and highlights the importance of observational data in providing information for decision-makers that is relevant to the clinical practice setting.” 

Have a look at this study; it is very interesting and readable, and brings up lots of questions and ideas. Although this study is about chemo side-effects, and does not include hormone therapy side-effects; I am thinking that a similar study is needed to measure hormone therapy side-effects in the real world. 


  • Dear @Brenda5, I am a lucky duck; been on anastrazole for over a year with with just a bit of creaking and stiffness in the morning. But hormone therapy has massive bad side effects for so many BC survivors. I will see if I can find out more about any hormone therapy side-effect research that has been carried out. Perhaps other network members or BCNA team know something about such  research?
    How are you feeling now you have stopped hormone therapy?
  • I stopped my hormone therapy because of side effects. I had survived bc, survived chemo but there was no upside because the hormone therapy had me living a sort of half life. I saw no point in it. I want to really live and not feeling as an 80 year old either as I am only 56.
  • I've asked my onc what he does with the information I give him. Does it go into some sort of database? No. He's a good doctor and I like him, but I find this unacceptable. 
    Given the money involved in the provision of these drugs, only the naive would believe total disclosure of all side effects would be generally available. If the people on the trial didn't report side effects as being debilitating, it isn't a 'thing'. For that to happen, 'debilitating' has to be an option on a survey. 
    I'm getting grumpier and more cynical every day.

  • Dear @sister, I agree we need to  be very questioning. But I think in this study of chemo side-effects, the interview questions and rating scales of 'just how bad/disabling is that side-effect - LOL'  are accepted as 'reliable' and 'valid'. The interviews were conducted by trained research people. 
  • I suspect that being just patients, our reporting is seen as anecdotal and unreliable...or is that just me being too cynical?