Radiotherapy viruses and fatigue

Ask our Nurses your questions
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Hello

I would like to ask the Nurses and in the meanwhile the community at large if anyone has experienced/ is aware of anyone having radiotherapy related fatigue more than 2 years after treatment or had more than one episode of fatigue after radiotherapy. Also if anyone has had a viral infection post radiotherapy and taken a longer time than normal to recover from it . At a support group we were all told that fatigue could occur up to 5 years afterwards but I haven’t heard of anyone experiencing that.

I was hit with a wave of fatigue 3 days after radiotherapy which lasted a good couple of months although it started to ease after 8 or 9 days . Recently I’ve had a virus but without the classic cold / cough it’s possibly related to my ears though they’ve been checked and nothing seen. Long COVID was suggested however I’ve had confirmed COVID twice which has always been accompanied by particular symptoms that don’t feel like anything else but COVID so I find it hard to believe it could be that when I haven’t experienced those symptoms . Plus I did two tests which were negative . The worst symptom is fatigue both physical and mental - it’s starting to lift but slowly and feels very like what I was experiencing after radiotherapy though not quite the same . Is this ringing a bell with anyone ?

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Hi JoanneN,
I am sorry to hear of your ongoing fatigue. It’s just a thought but have you had your thyroid levels checked. I put all my fatigue down to Abemaciclib medication, which I am taking as adjuvant therapy, but it turned out most of my symptoms were due to thyroid problems.
I hope your fatigue improves soon.

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Thank you for your reply - if things don’t improve soon I’m going to get back onto the surgery and ask for some tests . You’ve jogged my memory and quite a long time ago my thyroid was actually slightly overactive for a short time - and that was after a virus so might be worth being checked. Hope you have had some improvement with your own symptoms Shade now that they have found this . Xx

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Hi, I am 1.5 years post radiotherapy and do get extremely tired. I did ask if it could be from the radiotherapy or even tamoxifen. Was just told they both affect people different ways but it was possible it could be.
Hope you feel better soon x

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Hi,
The same thing happened to me. I had a virus which cause thyroiditis. I initially had an overactive thyroid gland as apparently as the thyroid throws out thyroxine as part of it dies off. It is then exhausted and I have developed hypothyroidism. In 90% of people after 12-18 months the thyroid recovers but apparently you are at risk of developing hypothyroidism in the future.
I felt so ill during the overactive stage that walking up the stairs exhausted me but I didn’t seek help. As part of ongoing treatment the Gp was asked to check my bloods annually and she threw in a thyroid function test which discovered my problem. I had this virus in August so I am still in the mist of this treatment but my Abemaciclib is due to finish in October so I can see a light at the end of this tunnel. I don’t count the 10 years of Letrozole😂

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Thank you for that - I had been feeling ok so maybe it is just a virus - I’m no longer on hormone therapy so can’t blame that… Do hope you feel better in yourself soon. Xx

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Hi, you were asking about low immunity as well. My hospital say I dont have low immunity. Local GP sent me for winter vaccines - covid and flu. They say I have low immunity for several years. Who do you believe ? x

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Good question - I wish I knew the answer xx

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Hi, I’m 3 years off radiotherapy, I’m exhausted every day, it’s very scary, I have to push myself to go out for a walk, most days I don’t bother, hope someday it will get better!
Trish

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Really sorry to hear this xx

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Hi, I’m nearly 3 years post radiotherapy and I have severe exhaustion and body aches which GP has said is late affects.

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Thank you for your reply . Hope you get some improvement . I’ve just come back from an appointment with an Osteopath who does lymphatic drainage and cranio- sacral work . She helped me a lot after I had labyrinthitis a long time ago. Hoping it helps this time

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I’m a year post radiotherapy/ chemo but 5 months post Herceptin. I’m also on Letrozole and I feel exhausted every day. I’m not sure what is causing it so I’m asking for a 4 week break from Letrozole to try to se if it’s that.

My cancer physio is helping me with some chest wall/pectoral muscle pain and tightness as well as cording, which she feels is late effects radiotherapy but was probably impacted the surgery recovery and chemo as well. Again not clear definitive reason to why.

Take care all :smiling_face_with_three_hearts:

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Hi JoanneN

Thanks for posting on our forum

We hope to be able to respond to you this week.

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With best wishes.

Lisa

Ask Our Nurses service co-ordinator

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Hi Joanne , I’m three years past radiotherapy and yes I still get the “pregnancy tiredness “ as I call it now and again , some weeks I’m fine plenty of energy but I do find if I do too much it hits like a ton truck !! Go easy on yourself , our body’s system will never be the same again after chemo / radiation …it’s learning now that this is gonna be our new norm and not panic , I hope your getting on good :blush: and I’m so sorry you’ve had to go through t this journey too honey xx

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Thank you I wish it was just me struggling with this in a way but it the same time it’s good to know it’s not just me if you see what I mean . Obviously it’s a big problem. After the lymphatic drainage and cranio sacral Osteopathy yesterday there seems to be a another improvement but don’t know if it will last. Xx

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Hi JoanneN,
4 months after radiotherapy I got worse symptoms than just after, increased tiredness, breast oedema - orange peel skin, cording. Then on top I woke up with another virus on NY day, after having about 2 days of getting over a previous mider virus. This floored me for nearly 2 weeks, I struggled through work - though felt close to tears many afternoons. Left work later than everyone else often as struggled to get stuff done as on a go slow, missed breaks as would of ended up leaving later than already was. It was horrendous, my whole body ached.
Finally, after 2 weeks, was back near my normal self. I hope this is not going to be a recurring experience with future viruses and that bouts of tiredness dont come and go over years. I cant blame tamoxifen as Id already stopped that prior due to side effects - lack of energy being one of many.

If you want to tell if its residual effects of radiotherapy years later, or the tamoxifen causing fatigue, many medics say its reasonable to take a 4 week break from tamoxifen. Out of 5-10 years of hormone blockers, 4 weeks is a tiny risk, but will give you answers potentially. I can say however that so far, late effects are purely the radiotherapy in my case, but I only finished it in August, so not years down the line, so yet to see what the future holds.

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I’m not on hormone therapy either and nearly 3 years post radiotherapy. Unlike yourself I didn’t go to work and my brain fog would have made me dangerous I think . Although felt very sick at times and some of the weakness was maybe due to being hungry as I just couldn’t eat much some days . I also ached all over but particularly my ears. Following treatment yesterday there’s an improvement so I’m hopeful :crossed_fingers: . Take care of yourself I know you’ve been having a rough time xx

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Hi JoanneN

Thank you for posting.

Experiencing fatigue (extreme tiredness) after receiving treatment for breast cancer is very common. It doesn’t always go away with rest or sleep and may affect you physically and emotionally.

Many people find that they start to get their energy levels back as time passes after treatment, but for some fatigue can continue for months or sometimes years.

Other factors may also contribute to fatigue, such as: the emotional impact of a breast cancer diagnosis; altered sleep patterns; reduced activity and poor diet.

There are things you can try to help manage fatigue as discussed in the previous links. You may want to keep a diary to record when you feel most tired. This can help you plan activities you enjoy in the times when you have more energy. Trying to stay physically active can help. Eating a healthy well balanced diet is also important. The following tips for better sleep may also be helpful.

It sounds like you have already discussed how you are feeling with your treatment team, breast care nurse or GP and the suggestion of long COVID has also been mentioned. There are a few other situations where fatigue can be due to other conditions such as anaemia, (too few red blood cells in the body) or thyroid problems as @shade mentioned, so it’s important these are ruled out.

As you will have seen from the replies on your post there are many people who suffer with fatigue after radiotherapy and we often hear from others that fatigue can have a real impact on their day-to-day life. It can be difficult to describe fatigue and other people may not always understand how you are feeling. They may assume that after treatment, you are back to normal and don’t understand the difference between tiredness and fatigue or be aware that it can continue after treatment has finished. You may be interested in the Macmillan booklet Coping with fatigue (tiredness).

We offer a range of free supportive services for anyone who has had a diagnosis of breast cancer which you may be interested in. They include face to face and online courses and events.

Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, If you have hearing or speech difficulties prefix our number with 18001 and the call will go through Relay UK. Our helpline has access to telephone interpreters if language translation is required.

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Best wishes

Helen

Breast Care Nurse

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