Bone Metastasis in Pelvic and Spine

I recently had an X-ray of my pelvic area. I thought I was having a sciatica issue. My back and left hip had been bothering me for about a month or so. Especially at night.
I received the results from x-ray and read mutifocal sclerotic bone lesions throughout the spine and pelvis consistent with bone metastasis. To say the least I was floored. This was the last thing I was thinking.
I have had breast cancer in 2000 a recurrence in 2009 when I also had a bilateral mastectomy. Im assuming breast cancer is the original cancer but I'm not 100% sure .
I have a pet scan scheduled for next week and an appointment with a medical oncologist at Mass General the next day. I'm scared and pray there will be some good news for my situation. I'll keep posting my journey.

@robinjriker geez, I am so sorry you have to join this particular club. I don’t know anything about your particular cancer of course I can’t say what your journey might be. I know you are understandably shocked.
I would like to give you a ray of hope. Metastatic cancer isn’t the short track sentence it used to be. We have quite a few members that have been metastatic for years, and in some cases have a decent quality of life on treatments. If you type metastatic into the search bar it will bring up some conversations.
When you had breast cancer before were you treated at Mass, so they have your records? Will you come back and let me know how you are doing?

@auntieoakley yes I was treated at Mass General and Dana Farber previously. That's why I got an appointment there so quickly. Thank you for your encouraging words. I will keep you updated on my future dr visits

I recently had an X-ray of my pelvic area. I thought I was having a sciatica issue. My back and left hip had been bothering me for about a month or so. Especially at night.
I received the results from x-ray and read mutifocal sclerotic bone lesions throughout the spine and pelvis consistent with bone metastasis. To say the least I was floored. This was the last thing I was thinking.
I have had breast cancer in 2000 a recurrence in 2009 when I also had a bilateral mastectomy. Im assuming breast cancer is the original cancer but I'm not 100% sure .
I have a pet scan scheduled for next week and an appointment with a medical oncologist at Mass General the next day. I'm scared and pray there will be some good news for my situation. I'll keep posting my journey.

Hi. I just discovered this Mayoclinic Connect and I’m hoping to connect with pwME who have metastatic breast cancer.
I was diagnosed with breast cancer in 2020 when I was 62, and it has since come back twice. In 2023 I had a bilateral mastectomy, and in March 2025 I was told it has metastasized to my hip bone.
Having both ME and cancer has been a challenge, as I’m sure you know, but the metastasis has been the toughest.
First, it took a while to wrap my head around the fact that it’s end stage. However, these days some can be considered a chronic illness. Also, I’m lucky (for now) the cancer has only shown up in one spot, and I’m told it won’t likely grow or spread for years.
Second, I'm taking Letrozole, which is my best chance of holding the cancer at bay. I should be on Ibrance but my oncologist doesn’t think I’d be able to tolerate it. (I thank my lucky stars she knows about ME!). The Letrozole alone is making my ME worse… fatigue, lower tolerance for activity, insomnia, muscle and joint pain, low mood, brain fog, and I think orthostatic intolerance/POTS. After taking Letrozole for 1 year my oncologist had me stop it for 6 weeks. She says I’ll probably have to take breaks of 6-8 weeks once in a while when I feel I can’t tolerate it any more. This is to hopefully allow me to take it long-term rather than stopping altogether.

Third, advice for people with cancer regarding treatments or side effects usually involve things like taking one(!) daily nap, going out, seeing friends, starting a new hobby… all things that are hard or impossible for me to do, and always lead to PEM or a crash anyways. Yet, all too often I push myself, to some degree, to do some of these things, before my time runs out… and the ME is getting worse. Also, though cancer support groups are great, it can be frustrating and discouraging when people talk about, say, having a really bad week when they couldn’t do anything for a 3(!) days, but then rest and went on a trip the next week. To top it all off, I feel guilty for comparing myself to others. After all, some are closer to the end of « end stage ».

How are people are dealing with the side effects of Letrozole and worsening ME?
Has anyone taken occasional breaks from Letrozole? I worry all the time I’m not doing enough to keep cancer at bay.

I find it hard not to feel down or depressed… it’s getting hard to tell the difference sometimes.

@dianelouise, feeling down or depressed is not unexpected - and it can be hard to tell the difference.

I want to clarify, when you say you also have ME, are you referring to Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome?

@robinjriker, how did the follow-up go with the oncologist? What did you find out? Next steps?

@colleenyoung I had a pet scan done but not at Mass General. I did see my oncologist. He looked at the cd of my pet scan which I had the day before. He thought it was probably metastasis brest cancer from a breast cancer I had 26 years ago in the year 2000. It was estrogen positive. The images from that suggested no involvement in any vital organs. So I felt much better about things.
I had a bone biopsy done a few days ago. Results are pending. Today i read MG interpretation of my pet scan and it sounds frightening to me. Although I'm not in the medical field I have an understanding of of medical terms. What I'm not sure of I've looked up. I don't want to jump to the worst case scenarios. But I am extremely worried. I have reached out in my patient portal and the RN will have my Dr call me back. Im trying not to imagine the worst. So I don't really know anything definite yet. Thursday i have a whole spinal mri. A scheduled phone conference with my Dr next Monday. Hopefully I'll get some info before that
Praying 🙏