Bone Metastasis in Pelvic and Spine

@robinjriker

I am so sorry that you are experiencing these cancer issues. I can imagine you are feeling stress and a difficult time .

I admire your immediate follow up with an oncologist.

Have you considered Red Door or Cancer Care free support groups and resources. Red Door offers Reikki, Yoga and quite a few other added free resources.

It seems like your treatment is off on the right track with excellent MDs.

Best

Susan

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.

@robinjriker That sounds about like when I was diagnosed. I went in for back pain, thinking it was a herniated disc and a CT scan showed bone mets all over from head to toe. After bone biopsy it was diagnosed as stage 4 er+ breast cancer. For me too, it was the last thing I was thinking. I was only 38 at the time with no prior cancer history.

It sounds like your care team is on the ball with getting things rolling, I hope they will keep you well cared for and most importantly, I hope they will not ever neglect your quality of life and keep it at the forefront. Please keep everyone informed of your journey and don't hesitate to ever post any questions or concerns. This forum has been so helpful to me these last 3-1/2 years since my diagnosis.

@coco46, isn't it mind blowing thinking you have a problem that can easily be dealt with. Then it turns out to be so life changing. This forum is so comforting and informative. I know I'm not alone. What medications are you taking?
Since I've last posted I have started taking Kisquali 600 mg along with Letrozole. I have read this is a good combo. Fingers crossed. I'll be getting blood work and visit with my onc. in a few weeks. 🙏 I'll post after that. Wishing everyone the best.

@coco46, isn't it mind blowing thinking you have a problem that can easily be dealt with. Then it turns out to be so life changing. This forum is so comforting and informative. I know I'm not alone. What medications are you taking?
Since I've last posted I have started taking Kisquali 600 mg along with Letrozole. I have read this is a good combo. Fingers crossed. I'll be getting blood work and visit with my onc. in a few weeks. 🙏 I'll post after that. Wishing everyone the best.