Fatigue worse after radiation: And still have fatigue, what helps?

Posted by sue417 @sue417, Feb 23 5:17pm

Hi
In march I will be going into eleven months post radiation. I feel since winter hit my radiation Fatigue and fibro has gotten worse. I am struggling horribly with this fatigue and now i'm getting depressed. I live alone.It has been a very. Difficult. I did not think the fatigue would be this debiltating this far out. I am sure my fibromyalgia Is playing a big part also. My fibro has been very much under control with the odd flare but nothing like this. I will be starting counseling at the end of March and I will be starting grief counseling at the beginning of march which i've been waiting ten months for. I am hoping some of this makes a difference. I had four deaths during my treatment, Plus having to care for my mother when I was finished in April quite a few nights a week.Finally got her in a nursing home in August.She has alzheimer's , that also has been brutal. Wonder if others with fibro have had this much trouble recovering from radiation.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Profile picture for sue417 @sue417

HiSo I am 11 months out from radiation and my fatigueis getting worse.I'm starting to get scared.I went to My naturopath ti get testing . My hormones. Nervous system and thyroid are very low. I have wicked depression which I have never had and anxiety. I am going back to my gp this week to see if he will put me on trazadone Which my pharmacist recommended because it will help with sleep , depression and anxiety. I have tried a couple supplements months ago for depression and I could not tolerate it. I just want to feel normal again and have some energy. I just did a deep clean in my bedroom and clean my window And I can't even function.😒 Has anyone struggled like this so far out. I did not take the AI meds

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It is never easy to say no. The older I get the easier it gets.

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Profile picture for wellgirl @wellgirl

The really sad part is we don't discover platforms like this one until after we have had the bad experience. I asked for "peer support" and never heard again from the social worker. I asked repeatedly for support when I ended up with stage two lymphedema. I was given cockamamie responses such as "no one else needs it" or "People are too ashamed to come forward." I was getting radiation during Covid. No one ever suggested online support. I can't believe that doctors and nurses don't know about Mayo Clinic Connect or SHARE Cancer Support or other organizations. The message to me was I was a complainer and I should be ashamed for having lymphedema!
I am glad to have found support, but women need the support from other women who have been through this from the moment they get their diagnosis.

You were very courageous to say no and mean no. I felt bullied into treatment. I had been through all the treatment when the father of a childhood friend wrote me saying, "I'm sure that your doctor will review with you all of your options and you will be able to make a decision that is best for you." I thought. "I had options?" No one ever discussed anything with me. It was their way or the high way. Doctors and nurses would shrug one shoulder (and it started to look rehearsed) and they would say, "It's up to you. It's you're body." And I knew they disapproved. How many years out since surgery are you?

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Hi
I too asked for some kind of support after.And I decided to start googling to see what I could find.Mayo clinic and breast cancer.org. is who i found. I did call my oncology coordinator at the hospital And told her about both of the Organizations and she said she would from now on Give breast cancer patients the info.

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Profile picture for delfinogn @delfinogn

I had 32 axillary lymph nodes removed - 8 when we did the initial lumpectomy, thinking *only* 3 were involved, but the post-operative pathology showed 6 involved, so they went back and removed the whole “packet”, which was 24 more, to be sure we were clear. Thankfully, no more were found to be cancerous, but it made me kind of wish we could put them back. The lymphedema, cording, and numbness has been harder than anything else, made worse with radiation. I was treated at Mayo in Rochester. My understanding is they try not to do it if there are only a couple nodes involved, but once there are more, the indication is to do a full dissection. My surgeon felt she was on the fence with mine during the first surgery with 3 known - she was trying to save me from the full dissection, but once they saw 6, she felt it was necessary.

As for fatigue - I am only 3 months out post-radiation. I’m on letrozole and just started verzenio. Also getting zometa injections every 3 months. Not sure which is contributing most to my fatigue but I am EXHAUSTED! I think they all are, plus stress. I have been doing acupuncture which helps many of my other symptoms. The fatigue is hard to touch though.

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Do you have a LANA certified Lymphedema therapist? If you don't I am sure Mayo could help you with finding someone. LANA is Lymphedema Association of North America. These professionals are usually PTs who have special training in lymphedema and the decompression massage. I first saw a regular PT then a LANA certified therapist. Seeing someone specifically trained and experienced with lymphedema made a huge difference. She She was able to easily and painlessly break up the cording, which helped a great deal. She also taught me many skills to manage the lymphedema.
Although everyone told me the numbness was permanent, I did recover some feeling after a long time. However, I have nerve pain in the form of occasional "shocks" and intense itching in the lymphedemedtous area on my chest wall.

As for post radiation fatigue, three months isn't very long. Be patient with yourself. You've been through the wringer and you still are going through it...

It sounds counter intuitive when you're exhausted but I have found that getting some exercise, even gentle exercise, gives me energy. I have joined Zoom classes specifically for women who have had cancer treatment.
Keep asking your doctors (oncologist, surgeon, PCP...) about the fatigue.
Best wishes.

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Profile picture for wellgirl @wellgirl

Do you have a LANA certified Lymphedema therapist? If you don't I am sure Mayo could help you with finding someone. LANA is Lymphedema Association of North America. These professionals are usually PTs who have special training in lymphedema and the decompression massage. I first saw a regular PT then a LANA certified therapist. Seeing someone specifically trained and experienced with lymphedema made a huge difference. She She was able to easily and painlessly break up the cording, which helped a great deal. She also taught me many skills to manage the lymphedema.
Although everyone told me the numbness was permanent, I did recover some feeling after a long time. However, I have nerve pain in the form of occasional "shocks" and intense itching in the lymphedemedtous area on my chest wall.

As for post radiation fatigue, three months isn't very long. Be patient with yourself. You've been through the wringer and you still are going through it...

It sounds counter intuitive when you're exhausted but I have found that getting some exercise, even gentle exercise, gives me energy. I have joined Zoom classes specifically for women who have had cancer treatment.
Keep asking your doctors (oncologist, surgeon, PCP...) about the fatigue.
Best wishes.

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Thank you, and yes, Mayo has three therapists who specialize in lymphedema - they are amazing! No one had explained what cording was till I saw her and she gave me instant relief. We’re working on all the things.

I agree about the exercise - trying hard to force myself - so hard when the exhaustion and joint pain is so bad, but it’s either a downward spiral or an upwards one!

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Profile picture for sue417 @sue417

Hi
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.🙏

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Thank you for sharing this post. It has helped me so much. I am also 66, I had 3 surgeries prior to radiation for invasive ductal carcinoma, followed by radiation. I am now post- radiation 42 days, and still experiencing daily intense fatigue, brain fog, vertigo. My oncologist is trying to start me on hormone therapy, but keeps needing to take breaks from that, as it intensifies the fatigue, vertigo. I was told some physical issues might get worse after radiation was completed. But when I go into my oncologist's office I'm met with a shocked look and the question, "So, what's the problem"? As if I should be feeling great at this point? However, his nurse did tell me that my current symptoms are common for all of the cancer patients she works with. Usually for several months after treatment, some longer. I think all we can do is what you and I are already doing; eat well, get as much exercise as we can, stay current with our follow-up Doctor visits, & stay hopeful and positive. Take care!

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Profile picture for betterhealth @betterhealth

Thank you for sharing this post. It has helped me so much. I am also 66, I had 3 surgeries prior to radiation for invasive ductal carcinoma, followed by radiation. I am now post- radiation 42 days, and still experiencing daily intense fatigue, brain fog, vertigo. My oncologist is trying to start me on hormone therapy, but keeps needing to take breaks from that, as it intensifies the fatigue, vertigo. I was told some physical issues might get worse after radiation was completed. But when I go into my oncologist's office I'm met with a shocked look and the question, "So, what's the problem"? As if I should be feeling great at this point? However, his nurse did tell me that my current symptoms are common for all of the cancer patients she works with. Usually for several months after treatment, some longer. I think all we can do is what you and I are already doing; eat well, get as much exercise as we can, stay current with our follow-up Doctor visits, & stay hopeful and positive. Take care!

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Hi
My Dr ended up putting me on 12.5mg trazadone for sleep and also Zoloft 25mg for the depression and anxiety. Initially the trazadone was 25mg but it was too much for me. My fatigue is better than it's been. I didn't realize depression can also cause fatigue and hormone changes

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Profile picture for sue417 @sue417

HiSo I am 11 months out from radiation and my fatigueis getting worse.I'm starting to get scared.I went to My naturopath ti get testing . My hormones. Nervous system and thyroid are very low. I have wicked depression which I have never had and anxiety. I am going back to my gp this week to see if he will put me on trazadone Which my pharmacist recommended because it will help with sleep , depression and anxiety. I have tried a couple supplements months ago for depression and I could not tolerate it. I just want to feel normal again and have some energy. I just did a deep clean in my bedroom and clean my window And I can't even function.😒 Has anyone struggled like this so far out. I did not take the AI meds

Jump to this post

Hi
I am 15 months post-op from stopping radiation treatment for breast cancer. 3 months ago I felt like my fatigue was lifting since starting Zoloft 25 mg. Now I've got fatigue back and feeling like I am depressed again and having some anxiety. I am going to 50 mg of Zoloft which I really didn't want to but I'm going to try it and see if it helps. Has anyone else had this issue with the fatigue and the depression and anxiety I know that it's from being taken off my hormones which I loved being on but I guess this is the way it is now. Also wondering when all these doctor's appointments will ever end it gets very depressing when you spend nine days out of the month out appointments.

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Profile picture for sue417 @sue417

Hi
I am 15 months post-op from stopping radiation treatment for breast cancer. 3 months ago I felt like my fatigue was lifting since starting Zoloft 25 mg. Now I've got fatigue back and feeling like I am depressed again and having some anxiety. I am going to 50 mg of Zoloft which I really didn't want to but I'm going to try it and see if it helps. Has anyone else had this issue with the fatigue and the depression and anxiety I know that it's from being taken off my hormones which I loved being on but I guess this is the way it is now. Also wondering when all these doctor's appointments will ever end it gets very depressing when you spend nine days out of the month out appointments.

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My fatigue finally lifted after about 1 1/2 yrs. What really kicked it was acupuncture. But also healthy yoga and pranayama helped too.
I do have my days though-

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Profile picture for sue417 @sue417

Hi
I am 15 months post-op from stopping radiation treatment for breast cancer. 3 months ago I felt like my fatigue was lifting since starting Zoloft 25 mg. Now I've got fatigue back and feeling like I am depressed again and having some anxiety. I am going to 50 mg of Zoloft which I really didn't want to but I'm going to try it and see if it helps. Has anyone else had this issue with the fatigue and the depression and anxiety I know that it's from being taken off my hormones which I loved being on but I guess this is the way it is now. Also wondering when all these doctor's appointments will ever end it gets very depressing when you spend nine days out of the month out appointments.

Jump to this post

Hi
I was wondering about acupuncture . I think I will just go back to my massage which I haven't done since my spine fracture again in April. I'm also in physio and I don't have coverage for stuff so it's a lot of money to put out

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Profile picture for sue417 @sue417

Hi
I am 15 months post-op from stopping radiation treatment for breast cancer. 3 months ago I felt like my fatigue was lifting since starting Zoloft 25 mg. Now I've got fatigue back and feeling like I am depressed again and having some anxiety. I am going to 50 mg of Zoloft which I really didn't want to but I'm going to try it and see if it helps. Has anyone else had this issue with the fatigue and the depression and anxiety I know that it's from being taken off my hormones which I loved being on but I guess this is the way it is now. Also wondering when all these doctor's appointments will ever end it gets very depressing when you spend nine days out of the month out appointments.

Jump to this post

I have been doing almost-weekly acupuncture since December with someone who specializes in onco patients, and love it. Helps me more with hot flashes and joint pain tho. The fatigue is super hard to shake. I had 3 weeks radiation in Nov/Dec and I’m on Letrozole, Zoladex, and Verzenio (the hardest one). I also take Lexapro for depression.

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