One year after Mastectomy. What next?

Oh @gbnana I am soooo sorry you are going through this, I did go through a similar time about 6 or 8 months after completing my initial treatments. It turned out that most of those symptoms in my case were directly attributed to the forced menopause (ovary removal and endocrine therapy).
But I worried all the time, which led to a little depression that made me want to sleep all the time.
That being said, I am glad you are seeing the doctor about this. My doctor ordered a PET scan for me because I just couldn’t get past it. This gave me great piece of mind, know they are pretty definitive for cancer.
My doctor said pretty much all of his patients who had cancer seemed to go through this. He claims the harder your initial treatments are, the more likely you are to be uneasy about relapse. In my years of advocating for cancer patients since then, I can say I believe it to be true.
I hope your doctor will find a way to give you piece of mind. There is a wisdom I received on connect that essentially said “ don’t let the worry about the future, steal the joy you can have today”. I have to remind myself, all the time🙄.
Do you have a list of questions lined up for your appointment?

Thankyou for your encouraging response.
I am not sure I can just ask for a Pet scan and get one, but that would ease my mind for sure.
Will ask at my appt tomorrow

I hope you have a productive appointment and get some answers, the support you need and the PET scan.

Anxiety about our health is an ongoing reality and concern in itself and anything to mitigate is helpful. Self advocacy is so important… and sometimes difficult to do.

@gbnana I’m so sorry you are struggling through this. Advocating for our own health is so important AND sometimes so hard. Just write down what you want to say or ask. Then it kinda relieves our brain and we just read the words. You can even tell your doctor that you will be reading it. Just think of this , like a teleprompter. 🤗 Your doctor doesn’t know your concerns unless you tell them. I think a PET scan would be good to calm your concerns and ease the stress. Try and be firm when speaking of the PET scan. Maybe read up about purposes and results of the test. (Personally, I don’t k ie too much about them other than the name and ppl have them done). Knowledge is power. Puts you in the drivers seat. Good luck & blessings to you. Please come back and let us know regarding appointment.

I am 8 years out and the same age as you. I had two mastectomies so there really isn't any way to check for recurrence, according to my docs.

I recently developed a local area of intense pain in my hip and messaged my cancer doc, just to be prudent. They recommended that I see my PCP and get an x-ray. The x-ray apparently did not show any concerns.

I was thinking about asking for a PET scan but instead went to a physical therapist who assured me the pain is soft tissue, not bone, so not a metastasis to bone.

I think it may be hard to get a PET scan covered unless you have gone through some other steps.

As the years go by, you may feel less nervous. I have read that if triple negatives make it 5 years, risk is very low. For hormonal cancers, I read, risk continues to climb. It may be that the mastectomy got rid of all your cancer. What was the grade?

I think any of us can relate. Happy cancerversary, if that is a thing!

I had a mastectomy in 2019 & in 2022 the MBC metastasized to my liver. I received chemo then only ketruda every 21 days. Had a PET Scan, cancer gone in liver; now pet scan showed a dark area in lymph nodes between my lungs. Have appt. Nov 23rd with pulmonary Dr to find out what the dark area is in-between lungs. My thoughts & Prayers are with you. Thank you if you reply back bemar23

I'm almost 2 years from my mastectomy, also had TNBC, but the opposite with treatments, I was 38 at diagnosis, Stage 3B so they threw the book at it and I have just now finished treatment a few months ago.

Besides the PET-CT, which we did at the end of active treatment, I get blood work done every 3 months for tumor markers - certain enzymes/proteins and such in the blood that rise in response to malignancies.

If they won't go for the PET-CT which is spendy, I'd bet an oncologist or maybe even a primary care Dr can order the blood work.

I feel you with the terror. I felt a lump in my other breast and my husband and I immediately freaked out. Even when the nurses and radiologists assured us after my mammogram / ultrasound that it was benign we did not believe them. My husband demanded to see the doctor and the radiologist very kindly took us into the imaging room to show us that it was normal breast tissue. We just aren't primed for good news anymore, we were ready like we've been this whole time for us to go south.

I ended treatment for breast cancer one year ago. I had a lumpectomy, radiation and chemo. I was targeted with Herceptin because I was HER2+. My hair came back quickly. It was a waste of time buying wigs and scarves,

Recently my radiologist asked me if I had any pain and I said I had what felt like arthritis in my hip. She had me take 3 MRI's. (I have a good Medicare supplement.) It showed a few inflamed looking spots that my oncologist didn't think were cancer, but I am getting a CT scan next. He also felt it's arthritis. I understand breast cancer normally spreads to the femur first, not to the back.

I'm 81 years old and other than some neuropathy in my feet from the chemo and that keeps me from driving now, I feel good. I don't take anti-estrogen drugs. I see the oncologist again in 6 months.

I am hoping you get some good news Nov 23. PETscans seem to give a really good picture of whats happening.
Knowing what is happening in our bodies is better than stress and anxiety of wondering.
Where I live PET scans are not considered helpful. I will now have to search for a private clinic as I wnt one done.
Good wishes to you

Results of my discussion with family doc yesterday.
No PET scan...instead
Blood workrequired
Mammogram/ultrasound
Chest xray
Echocardiogram
Referred me back to oncologist who told me all followup was done by family doc. Family doc disagrees