Hello - any experience of mastectomy and breast reconstruction with ME/CFS

Hi slb23

My name is Steph and I'm part of the Community team here at Macmillan. May I wish you another warm welcome to the Online Community although I am sorry that circumstances have brought you here. 

I'm sorry to hear about your cancer and it's understandable that you're feeling nervous about the surgery, it can be daunting enough without the added challenge of your condition. It's a good idea to look for others coping with cancer and ME/CFS, as it can be helpful to connect with people in similar circumstances.

Thank you for reaching out across the Community and please do keep chatting here. Although no one has yet responded with the exact experience you're looking for, I trust you will find some general support through the coming weeks.  I also wanted to suggest some alternative support if you don't find exactly what you're looking for here today.

In addition to the Community, I'd encourage you to give our Support Line a call. You can talk things through with a nurse and investigate other support options. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.

The ME Association might be a good additional contact if you haven't already investigated this option - The ME Association have the following related literature:

• Anaesthetics - Your Questions Answered
• Cancer, Chemotherapy and ME/CFS

I hope this gets you a little closer to finding some answers to your questions.

Please do get in touch if you would like any further help. I hope that the Community shows you that whatever you might be going through, you're not alone. 

Warm wishes,

Hi slb23

Welcome to the forum and I am sorry to hear that you,have been diagnosed with breast cancer on top of having ME/CFS. While I don’t have the experience you are looking for I thought I reply to you to add to Steph’s warm welcome to the community..

Wishing you the best of luck with your operation.

Bestmwishes

Daisy53

Hi there! It actually sounds like we are in similar situations. I was just diagnosed with DCIS and have opted to do a double mastectomy. Where it gets complicated is in trying to decide whether implants or a DIEP Flap reconstruction are better options for someone with ME/CFS, given that I already struggle with immune system issues, extreme fatigue, and muscle pain. I am very drawn to the DIEP flap as a 35 year old who wants to have the most natural and long lasting solution possible. But with ME/CFS I can't help but think that there is a risk my body won't comply with the healing, or reject the tissue in a way that a typical healthy 35 year old wouldn't be at risk for. 

Sorry we are essentially stuck in the same question loop, but I thought it might help to know you're not alone. I'll pass along any info I might get from other sources as well. 

Hi,

Thanks for your reply - its really good to hear from people in similar situations.

I had very similar thoughts about the DIEP flap versus the implant and I spoke to a couple of different plastic surgeons to help me understand which would be the right decision for me and the level of ME/CFS I am experiencing at the moment (high, probably because of the stress of everything). I also have immune system issues and muscle pain. I opted for a mastectomy with delayed reconstruction with a DIEP flap, probably in a couple of years to allow my body to recover properly and prepare for the reconstruction. I had my mastectomy about 6 weeks ago. I'd be really happy to share more about this experience if that would be useful?

Yes, please! I'm still so confused and apprehensive about choosing something as invasive as the flap treatment. Can you explain a little of your thought process and why you decided against implants? I was kind of tempted to go that route because I also have immune issues and a lot of muscle pain/dysfunction. Voluntarily adding to it feels counterintuitive.

I have chronic Epstein-Barr, which is what probably caused the ME. This whole mastectomy thing on top of what I was already dealing with is so overwhelming that I feel a little paralyzed when it comes to making decisions. Any information you can share about your experience would be so incredibly helpful, really. 

Hi there!  I’m about 6.5 weeks out of a left side mastectomy, and have had ME/CFS for about 15 years. I was also nervous about how everything would go, as I am functioning with my CFS but did not want to kick it over to be more severe.  I actually did ok with the anesthetia, woke up feeling more rested than normal? I did take about two weeks off and just rested, and then went back to work part time and then full time now, in an office.  I feel like I do tire faster, the brain fog does set in sooner, and I do have general body aches with tightness. But overall, the pain wasn’t bad? And I didn’t get as tired as I thought? Just was stiff and sore and grumpy because I didn’t heal as fast as I wanted to.  Please let me know if you have any questions, I wish you the best of luck!