r/sarcoma • u/Hashtag2969 Liposarcoma • Jul 08 '25
Treatment Questions Ongoing Fatigue
Hi all,
Just looking for some advice regarding ongoing fatigue. I was diagnosed with a Liposarcoma in my leg October last year. Had radiotherapy and then surgery and currently have no evidence of recurrence or metastasis.
The hospital are of the view that my prognosis is good but I’ve been struggling with fatigue ever since surgery. I feel so tired still and thought 6 month post surgery I’d be feeling a lot better. I have a mentally demanding job which hasn’t helped but just feel I’m not really enjoying life currently. I feel like I should be feeling better by now.
I know it is probably early days but have people have similar battles with this lingering tiredness?
Thanks for your thoughts in advance.
4
u/5GsPlease Undifferentiated Jul 08 '25
I'm 2 years out from UPS in my lower leg, which left me with drop foot and needing a leg brace (and often a cane) to walk. It took about a year to feel like I was getting my energy back. You haven't mentioned whether your surgery altered your gait, but just consider, aside from the horrible physical (and often emotional) trauma that you've been through, that simply moving around in this world may add to your fatigue in unexpected ways. I was a dancer and fitness professional before all this, so I'm used to moving in a much different way than I can now. My skills made my recovery a lot easier than it would've been otherwise, but that doesn't mean moving is easy now. You don't mention your age - I was 45 at the time.
In the grand scheme of things, it is still early days. I was on a LOT of pain medication which also added to the fatigue (and the freaking brain fog.) Just trying to talk was exhausting some days because I couldn't find words. I didn't start to feel better in terms of energy and cognition until I was off pain meds completely, and that alone took 8 months.
Don't despair. There is still a ways to go! Being patient with myself has been hard. Accepting permanent disability has been hard. A great support system and a sense of purpose has kept me moving forward, and I'm able to do things 2 years out that I couldn't have imagined last year.
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u/Hashtag2969 Liposarcoma Jul 08 '25
Thanks for your response, to date I’ve been fortunate in that I lost a small amount of muscle but it’s not had an impact on walking. I also lost some sensation in my thigh as some of my nerves had to be removed but I don’t notice it now. Physically I recovered quite quickly in the grand scheme of things which has been somewhat of a relief.
It is early days on reflection and I probably need to be a bit more pro-active at thinking about the things I want to prioritise going forward rather than taking a back seat. Working long hours at work probably isn’t one of them. I think I’m just going through a rough time as having cancer at a relatively young age (early 30s) has left my questioning a lot eg was I focussing on the wrong things before the diagnosis and has it all been worth it.
On the positive side I still have a life to live, which I’m thankful for. I just need to think about what I want from it.
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u/Wise_Item2969 Jul 08 '25
I can still do stuff but I have to have a lot of rest before and after. Over time I've gotten better at managing it
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u/MemoryDistinct1611 Jul 09 '25
It’s going to take toll on you both mentally physically and spiritually.Then if I read correctly your job is not helping. You need rebuild your self in all 3 and slow down eat healthy as the saying and smell roses. This about you not about the clutter in your life . You going be ok it’s a lot pressure and stress . Once you manage unfortunately life changing issue you should start feeling better. I divorced my sarcoma on April 7 doing radiation. I have bigger life issues than myself cancer. My fatigue and exhaustion taking care of my wife . She has cancer as well.
I wish you the best my friend send you prayers and positive energy
1
u/DoremusJessup Jul 09 '25
I was told that for every hour under anesthesia it takes a month to clear out the brain fog. I was under over eight hours over three surgeries. I'm retired so it didn't hit as hard as someone who went back to work. However I did not feel right for months.
1
u/Humble-Paramedic2787 Jul 10 '25
Long ago I was told it can take a year after general anesthesia to fully "recover" in every sense. Is that true? I'm not sure, but it was a well-credentialed veterinarian that I worked for that told me this.
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u/rAsna12r Jul 14 '25
Hey what kind of surgery do you have. Do you have limb salvage endoprosthesis or other kind
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u/jay-aay-ess-ohh-enn Jul 08 '25
Yes. I think you're likely to continue struggling with that for a lifetime.
My step-brother bought me a book called "Between Two Kingdoms" written by a cancer survivor about her struggle with the post-cancer malaise or whatever you want to call it. I didn't necessarily enjoy reading it, but it does offer a perspective on the feelings you are describing.
I think that the bottom-line is it is worth acknowledging that cancer is traumatic. The anxiety and stress combined with the harsh treatments will leave anyone feeling marked coming out the other side. I don't think it is realistic to feel like you will just get back to "normal". You'll need to put some focused effort into rebuilding a life that you enjoy. It will probably look very different than the life you had before diagnosis.