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Fatigue is worse after radiation
Breast Cancer | Last Active: Mar 31 12:11pm | Replies (17)Comment receiving replies
Hi Su417,
I am five years out from radiation and chemo and I firmly believe there is a white coat conspiracy of silence about long term symptoms after chemo and/or radiation. This year it was discovered that I have a genetic heart disease. I don't have high cholesterol, don't have high blood pressure, there is no blockage. As one doctor said, I did nothing to cause this problem. It was a-symptomatic all these years (I'm 69) yet five years after chemo and radiation, suddenly I am dealing with heart disease. Right after I got this diagnosis, I got pneumonia - in my left lung. If I had it in both lungs or in my right lung, I wouldn't be writing about this but I have never had pneumonia before and I was vaccinated against it yet I got pneumonia in the lung where I got the radiation.
If the radiation oncologist had told me radiation might have long term effects, I still wouldn't have opted against it to kill the cancer. I am five years NED (No evidence of disease.) However it would be nice if these folks (oncologists, radiation oncologists) would just validate our post treatment experiences.
I too have had trouble sleeping until recently. I have a new "normal" but it isn't the normal of my pre-cancer treatment. I am on Tamoxifen, so I have that to cope with too. I too found myself dealing with depression and anxiety. Some of this may just be "backlash" from all we've been through. When we're first diagnosed, there is a huge flurry of activity by both health care providers and people around us. Suddenly it all stops and we're stuck dealing with what happened to us.
Except to validate your experience this isn't very helpful. I take a T'ai Chi/Qi Gong class through AARP. It might be the reason I have started sleeping again. The T'ai Chi class is free and you don't have to be an AARP member, though they will encourage you to join. Another program you might want to try is Moving for Life. Movingforlife.org. Moving For Life "offers physician-supported dance exercise classes for older adults and people with chronic conditions such as cancer, diabetes, and depression." If you live in NYC, you can go to in- person classes, otherwise classes are online. Again, it is free. You have nothing to lose! Another thing I'd suggest if you're not doing this already, is to get outside. A fifteen minute walk out and fifteen minute walk back can help your mood. You don't have to power walk. If you can go to a pretty place, even better, a place that is special to you, all the better.
You commented about low thyroid. Ask your GP about that. Treating low thyroid can make a difference.
You did a deep clean of your bedroom. I'm impressed. I have so many projects I'm just not getting to.
You're doing all the right things. You're seeing health care providers and you're consulting your pharmacist.
Eleven months out is not that long. You are adjusting to a new normal. Best wishes to you.
Replies to "Hi Su417, I am five years out from radiation and chemo and I firmly believe there..."
I agree with the white coat conspiracy of silence. I told my surgeon NO to radiology. Surgeon kept going and want to set me up with the radiologist before surgery. I said no to radiology, period. They have their agenda to make sure they have good outcomes for their practice and the money making opportunities for the group. I have informed consent and say NO. We did all the statics for my stage/grade, no nodes and outcomes. At five years without radiation and with drugs there was only a 0.5% difference. There was a larger mortality rate at ten years and who know what other comorbidity that group of patients had but the statical difference was 2% difference. If you have a low stage/grade and have clear margins with your surgery they need to stop brutalizing women with too much treatment. As Dr. McDougall said breast cancer treatment is barbaric and brutal for women. I do not agree with all of Dr. McDougall thoughts but this one is sound with statics.
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I am very relieved to read your post.Sometimes you think you're going crazy with this recovery. The fact that they tell you you'll be tired for 3 weeks.Really ticks me off . It wasn't until I called my radiologist's nurse and asked her about the fatigue and she said oh yeah you can have this anywhere from six months to 5 years. like you i would not have done it. My cancer was stage zero DCIS Hormone positive her two negative. I.
Really did not think I would have such a difficult time recovering. I am 66. I belong to breastcancer.org. They have amazing zoom meetings for women in breast cancer.At different stages, you should check it out.It is a great resource and you can share what you're going through with others. I am in the group that has completed treatment. It does not matter how long you have been done. I live in canada. I will check out the classes you told me about. I have Q-gong you tube classes. I just can't seem to get motivated and I know I have to. Since winter hit I have been doing not enough. It is now spring So I am going to make sure I get back outside and Walk. I live alone , so I think I have it difficult. Your friends thinks that once you're done treatment it's over and they disappear It's very hard to explain to them that you aren't well Like you were. Thank you again 💓 for your response. I just wanted to tell you.I also had lung damage from my radiation on my right lung. It appears to have been getting better. My friend.
Got the pneumonia shot and she has been sick with it for 3 mths. I hope you recover soon.🙏