I have been on this site much. Luckily my cancer was caught really early and treatment was relatively easy. But two years on I’m really struggling with fatigue.
This is my story:
I was diagnosed with mid-to-high grade, ER/PR+, HER2+ DCIS w comedo necrosis in 2020. After lumpectomy the staging was adjusted to DCIS w multifocal micro-invasion. The docs spent a long time trying to decide how to treat it because there were so many points of invasion but each was teeny.
In the end I underwent 3 surgeries: an initial lumpectomy where the margins were not clear, a full mastectomy (right breast only) and reconstruction. The only additional treatment I’ve had since is tamoxifen (20 mg for 1 year and 10 mg since).
Between the mastectomy and reconstruction I took a year to let my body recover and avoid hospitals during peak waves of Covid. I felt great. I fully regained my strength and exercised like a fiend.
Since the final reconstruction surgery though I’ve never gotten back to feeling like myself. I struggle with intense fatigue that gets worse with mental / physical effort but not substantially better with rest.
My doctors have done a large number of tests and they have all come back with nothing. I have met with an oncology psychotherapist and my regular psychologist and am confident it is not depression.
The fatigue is not consistent, some weeks are better than others but it seems to be getting worse over time. At this point I sleep 8-9 hours a night and am deeply exhausted by the end of each day. It gets worse as the week progresses and on the weekends I sometimes can’t even get groceries without crashing afterwards.
Is this cancer related? I’ve heard of cancer related fatigue but it seems odd to me that I’d be so affected when the only treatments I had were surgeries. Am I just being anxious or am I right to be freaked out that cancer is once again taking over my body? The problem is I don’t know what to do about it. I don’t want to wait until I have more serious symptoms like brittle bones or muddled brain.
Appreciate the wisdom and experience of this group.
I looked up side effects of tamoxifen and fatigue is one of them. https://www.breastcancer.org/treatment/hormonal-therapy/tamoxifen#section-tamoxifen-side-effects
This may be the reason for the extended fatigue you are suffering from. Perhaps worth asking your medical team about.
Keep well
ACH2015
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@KEA44
good morning and thanks for this post. I think that there are a lot of things that don't really get discussed around living with cancer & it's treatments. once folks see/hear that you have finished your treatments – they just assume you should be ‘good to go’, #amiright ?
I had a couple of surgeries, and some radiation, and now take Anastrozole daily. that was OVER 2 YEARS AGO, for heaven's sakes.
I AM EXHAUSTED!!!! STILL!!!!!
all the time, everyday, no matter how much sleep I get. I have heard the same from others here in this community, and friends outside this group.
as @Runner Girl suggests, activity may well be the key. I have been forcing myself to move more, and tho I am still in my PJ's by 7:00 on a school nite, (ha ha ha), I DO feel better.
no doubt your medications play into this for you as well…. @ACH2015 probably hits the nail on the head with that also.
I hope you can find some tweaks to your routine that can give you some more energy…and that the follow-ups find nothing diagnostically out of sorts. glad that you are taking these concerns to your health care team for consideration.
have a great rest of the weekend.
please let me know how things move along for you. all tips and tricks will be welcomed by this exhausted breast friend.
cheers
su
@Jlo and everyone else, thanks for the responses. It is always helpful to know that others have experienced similar things.
I am definitely trying to exercise. I was used to working out 4-8x a week before cancer and then again before my last surgery. It’s really hard not to be able to move. The thing is I can still do a decent workout but I pay for it later. I’ve been trying to work up slowly but feel like every time I start to get a little better I get spanked again.
@KEA44
I'm a year into ADT, and completed radiation (EBRT and high dose brachytherapy) for an aggressive prostate cancer April/May. On Christmas Eve I spent a couple of hours sending out Christmas emails which left me mentally bagged! Halfway through a family dinner yesterday, I sagged again - I can best describe it as a brown-out. Conversation and noise wears me out.
I totally agree with the value of exercise but I have to be so careful not to overdo it or I'm wiped out for two days. I'm signed up for a Wellspring class in January so I'll try that. After being a pretty fit guy, it's hard going back to square one! But all we can do is try, right?