Forum Discussion
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.
66 Replies
- Dear @AllyJay, What an image; using a flamethrower for weeding! I must get off my recently retired back-side, and investigate and report back what research has been conducted, is or is being considered regarding the side effects of chemo and hormone therapy. Best wishes to all
- I read a great statement this weekend, by Dr Charley de Bock from The Children's Cancer Institute. He said, "Chemo is like weeding your garden with a flamethrower. It is very effective in killing the weeds, but causes amazing damage to other things". How very true....chemical carpet bombing with plenty of civilian casualties.
- @LucyE your comment about the doctors using the “ well at least you’re still alive” throw away line is so true. I’ve recently been told that chemo has in fact damaged the mitochondria in every cell in my body and thus my side effects including cardiomyopathy are irreversible and progressive. On hearing this I commented that if I had known then what I know now, I may have chosen a different path from chemo and that is when I got the “ but without it you may have already been dead” line. It’s ironic really that the one thing that was meant to attempt to save my life might eventually cause my demise anyway. My biggest regret is that I didn’t find out all of the information and ask questions at the start. I was diagnosed and began neoadjuvant chemo within the week so was in a daze and did not do any research. At the end of the day it is always our choice and the only way to make a truely informed decision is to have as much good quality information as possible to guide us.
Thanks @jennyss for starting such a good conversation. It’s been great to read everyone’s experience and thoughts on the topic. - @LucyE It sure does for some. It's bloody awful 'recovery' for many. K xox
- Hi @kmakm, I’m glad they gave you all of the information. I‘m still not on any medication, but I’d have to have a hysterectomy if I went on it and I’m not keen. I think the doctors do their best. It’s good to come on here and hear from other women who have had similar effects. I am feeling better thanks. It seems to stretch on for years this post cancer recovery.
- Hi @LucyE. I am sorry to hear that you've had another surgery, that is absolutely rotten. I hope you are on the mend now.
I had a choice between Tamoxifen and an AI and I'm happy to say my oncologist took me through the risk factors of both. She also gave me written material to take home and absorb. It's very disappointing that you weren't given all the information up front.
Are you moving onto an AI now? K xox - I haven’t been on here for a while. I just had surgery for side effects from Tamoxifen. When I was speaking to my surgeon about side effects she said “at least you are alive”. This is the go to line for most of the doctors i have spoken to. I have avoided a hysterectomy but have had 3 lots of surgery and increased risk of cancer because of Tamoxifen. This should be highlighted when they recommend Tamoxifen for 10 years or more for women who haven’t been through menopause. To me Tamoxifen is toxic and I will not take it.
- @jennyss I guess knowledge is power, though knowing the reality and the cause of the weight and how futile it is, is very difficult. Then the barrage we get about exercise and keeping your weight down because thats a risk of recurrence is crazy, because on this particular AI, it's impossible its all a contradiction. Mind you my Oncologist doesnt go on about that at all, just says do what you can and eat a balanced diet which I always have. He admits they don't have the answers not really.
- Dear @melclarity, Thanks for the info about AI's and enzymes. For me it helps to understand why it is so hard to lose weight! I really want to lose another 8 kg to reduce my risk of developing diabetes, but I am finding it very hard.
Best wishes to you and all BCNA Network buddies. - @Millie I agree with quality too over quantity.I was 43 at 1st diagnosis and did overkill with treatment and still had a recurrence 4yrs later. I think thats why I am a little scared to not take it f or 18 months more. Not easy any of the decisions xx
