Hi just wondered if anyone has had primary breast cancer that has spread to their bones?
What are your experiences? What was the prognosis and what treatments are you receiving?
Hi I have just been diagnosed in the last 4 weeks and was given my treatment last week. I am on oestrogen blocking tablets and chemo tablets along w8th an injection to strengthen my bones
Everyone has been optimistic about the treatment and how effective it is and I have been told there are so many treatments out there.
My anxiety is of the scale as I imagine you are feeling it seems more real now I am on treatment but it is still early days for me and youtoobythesounds of it
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That’s really encouraging. I was diagnosed with breast cancer and had my double mastectomy in May. however post op histology showed it spread to my lymph nodes so they ordered a CT and a bone scan. Only had that a few days ago and then I’ve got a phone call Friday to say that I need to go for my follow-up appointment on Monday so now I’m worried that they’ve seen something and that it spread to my bones or other parts of my body so naturally I’m freaking out.
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Mine was first detected because I was having upper back pain but then I found a lump in my breast which seemed to come from nowhere so I was sent for a biopsy and an MRI scan this was the test that showed the spine cancer before I had even got my biopsy results but they knew then that it was from my breast which was a massive shock. Please don’t worry the may just be getting you in to put your mind at rest because of what you have been through
Please let me know how you get on and I will keep everything crossed for you
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Thank you. It’s just the not knowing that’s torture. Then the unknown of what lies ahead of it has spread. Just hate all this!
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Hi There
I am so sorry to hear this. I just wanted to share that my neighbour has had secondary breast cancer in the bones for 11 years and lives a very normal life. A variety of treatments have kept it at bay. She works full time and feels very well. It always comforts me personally to hear positive stories and I hope it does you too.
Sending best wishes
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Hi, that is comforting to know, it’s always good to hear the success stories,you always think of the worst scenario
I will be glad to get this first month of treatment out of the way just so I know what to expect
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Thank you, that’s very reassuring to hear x
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I understand how you feel. I got called in for a ct scan after my surgery due to postive nodes . I get the results on Thursday and I am worried sick. Big hugs - so much support is out there and great to hear positive stories xx
Waiting for results is always agonising. Wishing you all the best for Thursday x
Hi There,
I was diagnosed 16 months ago, breast cancer spread to bones in my spine 5 places, 1 in neck, 3 in middle of back and 1 at bottom of spine, also in left lung but very small. I have been on letrozole to block estrogen taken every day, ribociclib - 21 days on 7 days off, and denosumab injection every 3 months. I am living a pretty normal life and am still working though I have adjusted my hours to suit. I get tired and I have some pain but not too bad. Insomnia is the absolute worst. But its not all bad. My friends Mum had breast cancer 4 times, recovered and its spread to her lung and bones too but she has been living with cancer for 14 years now! She started on ribociclib but it stopped working after a year and a half ( that freaked me out at first and I panicked cos I am on it too)so is on chemo tabs now I think which are doing a really good job. She lives a very full life.
Hope all goes well for you.
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Hi
I was diagnosed with secondary in my back and hip in 2021
I’ve been on palbociclib letrozole and monthly injection to strengthen the bones also as Al daily to help the bones.
I had the original lump and affected lymph nodes removed in March 2022
My scans are good and show no signs of any progression and prognosis is pretty good
I lead a fairly normal life. I can’t do as much as I used to but really can’t complain
I hope this gives you some comfort and wish you all the best xx
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Thank you so much. Yes this does give me hope. All this cancer stuff is such an unknown entity and sometimes I can’t help but think the worst. So it’s great comfort knowing that people continue to live normal lives. Wishing you all the best
Mine is in 3 bones in my shoulder, only found out from X-ray in June. CT scan tomorrow to see if it’s anywhere else.
Thank you ladies, for your encouraging posts xx
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I know exactly how you feel.
The waiting is horrendous!
Hoping for the best for you xx
Hi Rascal,
What investigations did you have, if you don’t mind me asking?
Did you have a bone biopsy to check for oestrogen receptors etc?
I’m wondering how long it will be until they decide on a treatment. Xx
I had a CT Scan and bone scan. No bone biopsy so far
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May I ask how you knew you had a problem with your shoulder? Did you have pain in the bones and ask for an investigation? I am interested because I have a slightly sore bone on the top of my shoulder which wasn’t there before but its not bad enough to do anything about at the moment. I had a mastectomy that side in 2022 and 4 lymph nodes removed 3 of which were cancer connected. I had 15 rounds of radiotherapy so I am thinking that would have seen off anything left. I wish you all the best. It is great that so many ladies share their experiences, we can all learn from each other.
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It was just a niggling little pain in my upper arm to start with, about 6 months ago. It moved around a bit. At the time I just thought, oh no, another pain to worry about.
Then it became difficult to hang washing out, put hair up, basically limited movement of my arm forwards or out to the side from my shoulder.
Then had spasms when trying to drive one day.
That’s when I contacted GP.
I got phone appointment for 4 weeks later. GP called me to go in to the surgery that day and told me to get a shoulder X-ray.
Got that 2 weeks later. He phoned me two days later to tell me that there was an osteolytic lesion and he was referring me to orthopaedic team. Turns out he referred me to Oncology dept.
4 weeks on, I have a CT scan of chest, abdo and pelvis tomorrow to see if other spread or new primary.
I’ve had a grim couple of months waiting…
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It’s the opposite side to my original primary.