After double mastectomy: Why do I have burning pains and more?

My goodness. You need to call and get an appointment with the medical oncologist and/or the breast surgeon. In California were had regular follow-ups. If your PA did not hear you, do not give up. You hurt and are having side effects that i never had after my surgeries. Have you had regular follow-ups? Fatigue to some degree may happen, dreams and night terrors probably sometimes. Are you on medications still? Be good to yourself and let the medical team get you some answers.
Someone else will post with experience on this. I just want you to know i hear you.

I'm take Letrozole daily; doctor said I'll be on it for about 4 more years. Every 3 months, I have a blood draw to see if any cancer cells are floating around. I'll see my oncologist in 2-1/2 months; 6 month check up.
Thank you for your kind words. Most times, I feel so alone. I find some solace in music.
I had such a horrible experience with my breast and plastic surgeons; I've given up on them. I was treated like something you'd scrape off your shoe.
I look forward to hearing from you and others. < 3

@cathybrown98 - Hi there. I’m really sorry to read what you’re going through and what you have been through.

I do not have any medical answers, but I want to offer you support and encouragement.

Your body and mind (and spirit) have been through a lot, for two years. Don’t give up even though you feel alone. It really stinks that your medical contacts are not hearing you … but put that person aside and keep looking for a medical source who hears you.

Does your city or town have a Gilda’s Club chapter? They are located all over the US. It’s helpful to use them for local resources and also to attend their support groups either in person or virtually.

Reaching out to this group is a good step! We all read these posts …. You’re not alone.

I am taking letrozole daily as well. 2.5 yrs so far. I may be asked to take it for 10 years. I still say if you are hurting, ask to be transferred to another breast or plastic surgeon team. I have found my nurse practitioners to be more help with my care. IF you have an oncologist, let them be your support. There are so many hospitals and places we get our care, that many times we are not offered the same services. I do feel if we have main and are not recovering daily, we need to advocate and ask for assistance. Mediation, music, walking and so many like actions help our well beings.
Lastly water, we must drink enough water to cleanse our bodies. Half our body weight is suggested. Plain ole water. I snuck in tea and a soda a number of days in one week and my creatinine level went up near the bad zone in my blood test. Water.........

@cathybrown98 my heart goes out to you. I’m sorry that you’ve been through so much! Doctors are supposed to care for patients but we hardly come across the compassionate ones. Most often they just dismiss our complaints and treat us as nuisance. May be you need to see a counselor or psychologist who can help you deal with weird dreams or night terrors. Or you can come here to vent. We’re on the same boat dealing with this horrible illness. Here you’re not alone. Hugs.

It sounds like anxiety. I’m 3 years out from my double mastectomy and about 2 1/2 years since I finished chemo. I still have crazy anxiety over cancer, and have bad dreams and anxiety attacks on occasion. I did end up seeking help for this after things settled down. I’m on tamoxifen and zoladex injections for a long while. The adjustment of being back to work and regular life was hard and I’m definitely not my old self anymore.

Hi, I’m sorry to hear you are having a bad experience. The night terrors, bad dreams, and fatigue could be from the Letrozole. I’ve been in Letrozole for two years and my fatigue and bad dreams started with it. I hate that medicine. I’ve done a few 2 week holidays and the dreams and fatigue stopped. But my oncologist wants me on it for the full 5 years (3 to go). So I’ll endure it, I guess. You might talk to your oncologist about other medication options and the risks of switching.
As for the burning pain, I agree with others that it should be looked at. It could be nerve pain, they can do local injections to help with that, they can cut the nerve if it’s severe. They can also give you gabapentin for nerve pain, but it has lots of side effects too including problems with thinking, so I’d be cautious with that one. Does it hurt along the skin like with light touch? That can indicate nerve pain. Talk to your oncologist. If your surgeons are not anyone you’d go back to, talk to another surgeon for help if you need to, there are many out there that will do revisions and help people that aren’t happy with their results. Keep searching for good doctors, they do exist. Do not lose hope!

@cathybrown98 I told my oncologist this week about some pain and burning I am having post mastectomy. He told me about phantom pain, which is very common and expected for bilateral mastectomy patients.

You can google it to understand more and learn about treatments.

To me "phantom pain" is really nerve damage. Nerve damage is pain.

Thank you; I wasn't told anything like that, but it makes sense.
Can anything be done for it?
Everyone who has replied to me has been so supportive and sweet.
Sending you all hugs!