ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome)

Anonymous

ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome)

Too-Ticky

Did anyone here already have ME / CFS before being diagnosed with cancer, then undergoing a mastectomy, radiotherapy or other cancer treatment?

I've had Severe ME (post viral) for 7 years. It already limits my quality of life significantly - I'm predominantly bedbound but spend a few minutes moving around each day unless I've crashed from a physical activity (like attending a hospital appointment). A physical activity like that will leave me bedbound for 4-9 days.

Now that I have a breast cancer diagnosis too, and will be having a mastectomy in 4 weeks time, then radiation, I know my body won't be able to cope with the repeated exertion. (Normally I would leave my home once or twice a month at most, and it takes at least 4 days for my mitochondria to recover from that, to be able to maybe then have enough energy to have a shower or get dressed or whatever).

There must be other people with varying degrees of severity of ME/CFS who later have a cancer diagnosis. As ME/CFS is a very poorly understood condition (by doctors) I would love to hear from people who are living with both cancer and ME/CFS so I can learn from your experiences please - how you've coped, what you've done differently to best manage both conditions, and how you've managed doctors and treatments.

Thanks.

jamiebeth

I have a severe case of ME/CFS as well. I'm only able to go out every few days and can't do any physical activity at all really. I was diagnosed with IDC in 2010, with a lumpectomy in 2011 and brachytherapy radiation afterwards, which only took a week. I couldn't imagine going in every day for 6 weeks for radiation.

I was just diagnosed with a recurrence two months ago in the form of DCIS, and I had my unilateral mastectomy literally last Thursday. It's not easy dealing with breast cancer and ME/CFS. I have a lot of help from my husband and mother. I space my doc appts out so I can rest between them. And because I'm so bed-bound, I have osteoporosis in both hips, so an estrogen blocker isn't a good idea for me.

I hope your mastectomy and treatment went well.

Too-Ticky

Thanks for your reply, Jamiebeth. Sorry that you're also juggling both ME and breast cancer.

Apart from seroma, which I still have, my mastectomy operation went pretty well. They kept me in overnight but put measures in place to manage my co-morbid symptoms, that really made a big difference to my managing my ME afterwards.

I've since had a few more scans and I meet my Oncologist for the first time on Monday, where I'll find out what the scans showed and what treatments they have in mind for me. I know the minimum will be radiation for chest wall and lymph nodes, and hormone blockers. I don't know what else yet, or how on earth they'll be able to help me schedule the radiation sessions so that I don't end up bed bound again within about 3 days of the exertion. I hope it's an understanding doctor who's not dismissive about it, and we can find a solution that works safely for me.

How are you feeling after your most recent surgery? Are you feeling well and managing your ME symptoms around it okay?

jamiebeth

Hey there! I'm 10 days post-op and doing ok. The hardest part is getting good sleep at night with the drain in. My energy level is almost back to my normal baseline, so that's a relief.

I hope radiation goes well for you. I didn't experience too much fatigue from the radiation itself, just from going to my radiation oncologist's office every day. You'll probably be tired from the daily trek, but it's doable, even while having an ME/CFS flare. Find someone to help you out around the house and drive you to your appointments so you can devote your entire energy budget (you know all about energy budgets, I'm sure) to the daily radiation appointments. Then get as much rest as possible on the weekends. I had a week-long flare after I was done with all of the cancer treatment the first time around. This time I've yet to have one!

Keep in touch!!

Too-Ticky

Thanks Jamiebeth. That sounds like good advice about the travel. Hope your sleep improves soon.