Hi everyone,
I’ve recently been diagnosed with primary invasive breast cancer and am due to have a lumpectomy with removal of a few of my lymph glands on November 8th. I’ve had Long Covid for over 3 years now and am concerned about how my body with cope with the surgery and any following treatment. I find have have little resilience now and my body is unable to cope well with stressors, tending to crash. I was wondering if anyone else here had experience of breast cancer while having LC. I’ve been told that people are known to have developed LC whilst having breast cancer treatment but as far as the nurses I’ve asked they know of nobody else in my situation. My GP has suggested that others with chronic fatigue or fibromyalgia may be in a similar situation. Does anyone else here find themselves dealing with these 2 together? I’d love to hear of your experience and anything you found that helped.
I have post viral fatigue. And have had for more years than I care to remember. I also have fibromyalgia now. I had my lympectomy in June and lymph nodes removed for testing. I am one of the lucky ones in that I only needed to be put on Tamoxifen and radiotherapy (5 sessions of radiotherapy).
All I can say is give your body a chance to heal. I have been exhausted between the op and appointments with oncologist and radiotherapy and the traveling (around 160 miles round trip to radiotherapy). I am still exhausted and I’ve been tho to let my body heal it’s not just cancer I also have post viral fatigue and Fibromyalgia and to remember that. Although I am very impatient. I am so lucky my hubby works from home and done/does the cooking for main meal. And he’s always been there for me. But I would say exhaustion is the worst Even my lumpectomy I had to travel 70 miles there wait for day surgery and then 70 miles back. Again my hubby has been driving me to everything. And as time went on the worse I was getting. Just exhausting. Oh and my blood pressure seems to have gotten worse and my asthma. Will be thinking of you.
Take care and rest Annmarie
Hi there…I am really sorry to hear of your diagnosis and wish you well on the 8th. I had had Chronic Fatigue/ME for many years when I was diagnosed with breast cancer 10 years ago. By then I was used to managing my symptoms with rest, low-stress and things like Mindfulness and gentle exercise. But the thump of surgery/drugs etc and the psychological effect of breast cancer certainly knocked me back. I made the decision not to have any extra hormone treatment because of the CFS but basically the same thing is true. I think even people coming from a vigorous life, full-time work etc still get a shock but you are starting from a lower level of energy. I can only say be gentle with yourself and use the techniques you may have learnt to cope with Long Covid. It may be hard but there is a way through. Above all discuss with your consultant things that may be easier on your body. Make them aware of your LC as well. Take care saffron1 xx
Hello Annmarie, thanks for your reply. I’m sorry to hear that you’ve had such a draining time with your treatment. Gosh, just all that travelling sounds exhausting! I’m very fortunate that the hospital I will be attending is about 5-10 minutes away (depending on traffic). I also have a very supportive husband who is now my carer. I went for my pre-assessment today and spoke with the nurse there about the LC. Like you she said to speak with the anaesthetist about it before my operation. I will also make the treatment team aware of the impact it has. I’ve been very impressed with the care of the staff I have seen so far, so that has been encouraging. Also the other patients have been really friendly and we were having a good laugh today whist waiting for all that was involved in the pre-assessment (mainly a LOT of waiting to be seen!). So I’m feeling encouraged and reassured. It’s helpful to have a realistic idea of what I will need to cope with during and after the treatment and take the best care of myself that I can. Staying positive seems a good place to start. Take care 
Hi norfolkfred, thanks very much for your reply, all very helpful suggestions. Sorry to hear of your Chronic Fatigue/ME. I have been making people aware of my concern regarding the LC and my wish to keep treatment to an effective minimum. I hope that the cancer will not have spread so that will be possible. Like you I’ve got used to managing my symptoms as well as trying to find joy in every day (where possible!) It has been helpful to talk with people and I’ve asked for a volunteer from Someone Like Me (I think it’s called) ie another patient. They are trying to find a person best suited me; I’ve found Breast Cancer Now to be a wonderful resource with kind, reassuring people answering the phone who have plenty of time and information, so I feel very fortunate to have them, as well as this forum. Thanks again for replying and I hope your health improves. Best wishes
I have been diagnosed with chronic fatigue. At 62 I never knew I had has mono , but I got a new primary who diagnosed it very quickly. Fast forward to cancer diagnosis and reading about estrogen dominance I read it can the fatigue. My oncologist started me on anastrozole which blocks the estrogen and, low and behold fatigue has greatly improved. I doubt this helps much with long COVID, and I do feel for you. Pull in the support system, id I loves close enough I would help. Best of luck. Blessings to you.
Hi Patsrn, thanks very much for your reply. I did some research on mono as I’d heard of it but wasn’t sure what it was.
I found an interesting article on a website called “health line”. A section of it reads, “Epstein-Barr virus (EBV) is a virus in the herpesvirus family that can infect humans. EBV infections are very common - you may have already contracted the virus without even knowing it. The condition that you may associate EBV with is infectious mononucleosis, or mono. However, experts are researching potential links between EBV and other conditions, including cancer, autoimmune diseases and long Covid.”
So there could be a link there for me as well. I’ll mention it to the team when I get to meet with them. If it is the case then anastrozol may help me as well and improve my fatigue, which would be marvellous!
Thanks also for your good wishes, I’m certainly turning towards any support I can find (such as this forum) and it’s very helpful.
Wishing you all the best on your recovery.
Hi @saffron1
Welcome to the forum, we hope you find it a helpful and supportive place.
Please do have a look through the various boards and topics to find those going through similar experiences or for places you may be able to share your experiences and knowledge. It’s great to see that you’ve already had others sharing their experiences with you on this topic.
Please know that our nurses are here for you any time, here on the forum on the Ask our Nurses your questions or over the phone 0808 800 6000
This is a very supportive place, so please do continue to ask any questions you may have.
Once again welcome, we’re always here for a chat anytime.