Post surgery chemotherapy with fibromyalgia

Hi Mycelium, 

Thank you for getting in touch and welcome to our online community. It sounds like you’ve been through so much with your surgeries and lengthy hospital stay. I hope you’re continuing to recover at home.  

It’s good to see you’ve already been talking with another member in our womb cancer forum.  

I appreciate you’re keen to speak to someone with similar health conditions. You may be able to talk with someone through Fibromyalgia UK. They have regional support groups and there is a Facebook group Fibromyalgia Warriors UK. 

Research on patients who have fibromyalgia and cancer at the same time is limited. It’s possible that chemotherapy could potentially worsen existing fibromyalgia symptoms, trigger a relapse or trigger the condition in some people. However, thorough research is needed to understand the relationship between these two conditions. 

Some chemotherapy drugs can damage the nervous system. Platinum-based drugs, taxanes and vinca alkaloids can cause peripheral neuropathy, which has symptoms in common with fibromyalgia. These drugs are thought to be more likely to worsen fibromyalgia symptoms.  

Chemotherapy affects our immune system causing inflammation. This may contribute to the development or worsening of fibromyalgia symptoms. 

Cancer and its treatments often cause stress and anxiety. It's known that these can worsen fibromyalgia symptoms and trigger flare-ups. 

If you decide to have chemotherapy, it’s important to know what’s normal for you, symptom wise. Any new, changing or worsening symptoms should be assessed early as this can mean treatment is more effective.  

There are symptoms of fibromyalgia and chemotherapy that are very similar. Both can cause pain, fatigue, affect sleep and cognitive function. This can make it difficult to know what’s causing these symptoms.  

Your consultant can assess you, arranging any necessary tests to work out whether it’s caused by chemotherapy or your fibromyalgia. A specialist in fibromyalgia could also be involved in your care, if they’re not already. Accurately diagnosing the underlying cause means you get the best and most effective treatment. 

Eating a balanced diet, exercising, managing stress, getting a good sleep and reporting any new, changing or worsening symptoms early can help to relieve your symptoms and manage day to day.  

I understand how hard it must be to make the decision whether to have further treatment or not, given how well you manage and cope with your fibromyalgia currently.  

You could ask your consultant if they’re able to share information about how much the chemotherapy might improve your survival and reduce the risk of the cancer coming back.  

If the improvement in survival is small, some people won’t think it’s worth the potential side effects. Others want to make sure they’ve done all they can to reduce the chance of the cancer coming back. 

We’d encourage you to weigh up the potential benefits and risks by discussing these with your consultant. There is no right or wrong decision. People have different priorities, concerns and circumstances that means they make different choices. It’s important to remember that the decision you make is the right one for you.  

When making an important decision, it can help to think about how you’ve made big decisions in the past. You’ll be the one having treatment, so you need to be happy with your choice. Ask more questions if you need more information about your options. You might find it helpful to talk to your family and friends too. They may be able to simplify things for you.  

We have information to help with making treatment decisions which could be worthwhile reading through. 

I hope this information helps to guide you. Sometimes it can help to talk things through with us, don’t hesitate to give our helpline a call. You can also get back in touch here. 

Take care and best wishes, 

Karla (Cancer Information Nurse Specialist) 

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email or use webchat. 

Ref: KS/HK 

Thank you. I asked this morning about any fibro specialist possibly being available to discuss but, unsurprisingly, there isn't one. I do also have osteoarthritis and any losing spondylitis which the oncologist said might also be affected so it is a big decision! I just checked out that page on making treatment decisions--thank you for that too. Been discussing with my husband and will also discuss with my daughters.