Fatigue is worse after radiation

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.

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.🙏

Hi Sue,

I had stage 2 invasive carcinoma. The tumor was 6 cm (I was not that large but it was so deep in the tissue that it wasn't found by the mammogram) I also had lymph node involvement. They took out 26 lymph nodes, although only 3 were cancerous. I ended up with stage 2 (irreversible) lymphedema. I am now waiting for an evaluation for surgery for that. I didn't have a choice as to refusing treatment. It was do or die. Mine too was HR + HER 2 -. Because of the size of the tumor and the lymph node involvement I had to go on hormone blockers. I had a terrible time on Aromatase Inhibitors (became very depressed) so they switched me to Tamoxifen. Had a terrible time with that too, so at first I was taking a very small dose of it and I inched my way up.
I know, this winter has been freaky. I'm in New England where it has been extremely windy and cold. It is probably much colder in Canada. So I know what you mean about getting out. I too live alone. It is hard to motivate yourself to get up, much less get out. You've probably been told though that people who exercise regularly have a lower cancer recurrance. One thing that helps me is I have to sign up for the Zoom Qi Gong and the Moving for Life classes. That makes me make a commitment. I put it down on my calendar. The other thing is, when you are on Zoom you see other participants. And yes, there are people from Canada. There are over 160 people in the Qi Gong class! You don't have to turn the video on but you know you're not alone.
I love the way you were first told you'd be tired for three weeks... then you're told, "Oh, yeah, six weeks to five years." LOL. I'm glad to hear cancer treatment providers are just as deceptive in Canada as they are in the US!
Keep writing. We can give each other support and hopefully help others too!

Hi
Wow that's alot of lymph nodes. Why so many. I had my 1st surgery dec. 2023 then my 2nd surgery feb 2024 for lymph nodes. Mine was on the right. They only took 1 out because it was the only one that lit up. It was clear. Why would they take out so many. I hope you have a good outcome from the surgery. Can you tell me the zoom link for the classes

Yes, I am furious about those lymph nodes being removed. Soon after the surgery I refused to go back to her. That surgeon was terrible for so many reasons.

At the time I was over weight, so she should have known I was at high risk for lymphedema and taking out so many lymph nodes would put me at a higher risk.

There was no good reason for it. I get riled up thinking about it. Then when my arm started feeling funny and I complained to the oncologist she said, "Oh, that will be there." I asked, "How long?" She said, "Longer than you'd like." She acted like it was no big deal.
I sent a message to the nurse navigator who didn't reply for three weeks. She told me she had been on vacation. She was glad I was doing well. I thought, maybe I'm just a complainer.
When I kept complaining, the oncologist sent me to a PT who wasn't trained in lymphedema.
I didn't realize I needed someone certified in lymphedema therapy. When I found out that I needed a lymphedema therapist COVID had started and they didn't want to give me an appointment with the lymphedema therapist. I threw a hissy fit and said it was an emergency.
By this time my arm was 20% larger than my other arm and I was into irreversible lymphedema.
It looks a whole lot better now but I have to wear compression on my arm and hand 24/7 and I use a pneumatic pump.
It took a while for me to do it, but I finally went to a major cancer Center in Boston. What a difference in care!

I never heard of two surgeries, one for the lymph nodes. They did it all at the same time. I woke up on September 20, 2019 with no breast and missing 26 lymph nodes. I don't know if it was the anesthesia or just a reaction to the whole thing but I went into a tailspin and got very depressed too. Considering the number of women I have heard from on this platform and elsewhere who get depressed after BC, you'd think doctors would be more sensitive to that and reassure us that it was a normal reaction. Like you, I felt alone and thought I was going crazy.

Here's the Qi Gong class. https://events.aarp.org/event/AARPRITaiChiMarch182025/summary

Here's Moving for life https://www.movingforlife.org/classes/

I looked up breastcancer.org It looks awesome. You also might be interested in SHARE cancer upport. https://www.sharecancersupport.org/

I hope this information helps other women too.

Hi
I hope you joined the zoom meetings.Because then we can actually see each other. They are on monday nights and friday afternoons. I usually do monday Night. Oh my god I can't believe What that doctor Did to you. My
Surgeon did not want to do my lymph glands until he had my pathology back which I am glad he waited. Fortunately.
I worked in the hospital In the operating room I used to do the Inventory and purchasing so I knew the surgeons and mine was amazing. I really feel for you what you Have been through it's just Wrong. It sounds like overkill. I had dye injected into my breast in nuclear med radioactive tracer, then in the o.r. a green dye was injected and it lights up the nodes that the tumor would drain into. In my case only I think he said 4 lit up so they only took the first one it was cancer free. So no need to take more. I would be extremely depressed too if I had those circumstances.I'm so sorry. Thank you so much for the links. Hopefully today is a better day. The sun is out today here and we're going up to 9 degrees so my plan is to go to the park for a walk today. Hope your day is good .💗

Thank you for this. I am about 15 months after finishing initial treatment - surgery, chemo and radiation. I have been tired since the chemo but lately it’s been worse, I can doze off in the middle of doing something and that is SO unlike me. I am HR+, Her2-, currently on exemestane (off Anastrazole after 6months due to side effects). Saw oncologist last week and he even mentioned I “looked tired” but no reason found. Suddenly I must be depressed. While he put note on record that he would start work up for extreme fatigue, nothing was done - I feel he’s probably leaving it up to PCP. I guess maybe there’s some depression thinking this will be my life for a long time but at least this is some validation.

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.

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.

Hi
Wow I wish I would have known this before I had radiation. I was stage zero with clean margins but there was a microscopic break in the wall. I really didn't think I wanted to do it.But the radiologist made a case that I needed to. I am so pissed off.