Positive stories about bone mets!

Hi all, I’ve been on this forum before when I had bilateral BC last year, had 2 x lumpectomies and radiotherapy. Now on letrozole for 5 years. Lately noticed pain in one of my ribs when I lie on it or press it, but fine the rest of the time. I’m about to go on holiday so will get this checked out when I come back, but worried it’s spread to my rib! Reading up about bone mets is scary, it sounds as though life expectancy is low if this is diagnosed, so I’m looking to see what people’s experience is of this, how long you’ve had it, how it affects your life. I know it may seem odd asking this when I haven’t even been diagnosed, but it’s how I cope with things! TIA for any feedback, and hope you’re all doing ok.

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Hi Sunlover100!

I had BC in 2008, full mastectomy and full lymph node clearance. Little monster returned in 2017 on T12 (spine near ribs) which I had SABR radiation for. (SABR is like normal radiation but just uses a lot of tiny rays all focussing on one spot rather than a whole area being radiated).

On Wednesday I’m seeing my Oncologist about the fact they’ve discovered the cancer has yet again returned - I just can’t evict this dreadful squatter!!

I have tiny spots on L3, L4 and L5, two tiny spots on my right hip and its eaten in to 2/3rds of the bone marrow in my right femur. So, I’m guessing it’ll be chemo and radiation but whatever it is I will keep on fighting as I’m not letting this disease control my life, I will do what I want for as long as I want!!

My original MacMillan nurse told me that staying positive and putting your cancer in second place after what you want to do helps a lot. She said she knows of people with only small cancerous lumps, after removal and being given the all clear news, were so negative and miserable that the lived miserable lives which also affected their families.

I’m stubborn so whatever my outcome I’ll battle on and hope you all do too!

Regards
DeeDee

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Hi Sunlover100,
I’ve recently had similar problems, off and on, with my ribs on one side.
Feels like a bruise when pressed and painful to lie on.
I had a chest X-ray last week and it came back normal.
Hope you have a lovely holiday.

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Hi Deedee. Can I ask when you had the bone meta (2017) did you stay on a treatment after the radio - up until now?
( as I have Ribo and denusomab)
And how are they tackling it now - the new mets? Thanks xlee

Thank you all for your reassuring (so far!) replies. Deedee you sound like a very positive lady and I’m sure that helps you deal with everything. It’s so hard when you think you’re done and dusted with cancer and the treatment then it all pops up again! I’m hoping that this is nothing but best to check it out I know.

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Hi

I had BC meta in Dec 2017 and had SABR (stereotactic Ablation Radiation) at the Christie, Manchester. I had treatment 1 a week for 3 weeks and it completely ‘burnt’ the cancer away. Over the following year my body ‘filled in the holes’ with calcium.

I had Denosumab injections for a year but developed osteonecrosis in my left jaw (it’s a side effect), so they stopped the injections.

I didn’t have any other treatment, other than I take Letrizole daily and Palbociclib (3 weeks on, 2 weeks off).

So it appears that my ‘metas’ wake up every 7-8 years as I now (they presume) have it in my femur marrow. Hopefully, Wednesday I’ll know for sure, and know what my treatment plan is.

Hope this helps.

Regards
DeeDee

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Hi Deedee - very best of luck with your appointment. Can I ask if you are able to lead a fairly normal life with this condition?

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Hi, last month I was diagnosed with primary breast cancer for the first time and cancer in my bones at the same time. The CT scan of my torso shows its all over my bones. However, I’m feeling very fit, and have no more aches and pains than I have had over the last few decades. Inbetween diagnosis and start of treatment I’ve been on a 5 day gravel cycling holiday, which was challenging and adventurous. I felt great during it and had a wonderful sense of achievement after it. Luckily I didn’t fall off. Last week I started Ribociclib (plus the Letrizole )and denusomab which is giving me some bowel problems but I still aim to keep as active as I can. I’m So grateful that I might still have years to live rather than months. Very grateful I’m going to make it to 60 next month, and very grateful that I’ve lived nearly 10 years more than my mum already.
Hope you have a lovely holiday

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Thanks for sharing your story - must be such a blow being diagnosed with it in several places, but great that you’re feeling so well. I hope the meds do their stuff. I think I was freaked out when I read that people live for 6 months to 4 years with bone mets (google!) but hope that new treatments extend that for people.

Hi

Yes I lead a normal life, I do anything I want but recently I’ve just had to be careful I don’t put too much pressure on my right leg.

Hopefully tomorrow I’ll know more about how weak it may be (or not)!

I’m 72 so have given up climbing trees, bungee jumping, parachute jumping, climbing mountains etc., that all you younger people do, lol!

I am in control of my body so this latest cancer diagnosis had better beware because I kick it in to touch every time it pokes its head up, lol!

Don’t ever give up believing in yourself and do whatever you want while you can!

Everyone on here can be fierce so go for it and just live!!

Sorry for the rant, lol!!

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I love your attitude to life Deedee! Keeping active is good I’m sure. I’m a mere youngster at 62 but not planning on giving up any time soon!

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Good for you!

Hi sunlover100

I, like many people whose posts I’ve read, have exactly the same pain, limited to the same time (lying on and pressing). I tried twice to persuade my MDT to agree to an MRI on the specicfic area, but because I had a CT scan and bone scan with contrast which seemed clear, they denied me. They waved my concern off with the comment that it was probably due to radiation damage. It’s left me with lasting concern and I think I will try again with a different hospital.

(I could request this privately as a last resort, but I certainly wouldn’t trust any of the commercially available MRI services advertising on the internet !)

Sorry to hear this Misty, I wonder if it’s worth going to your GP? You want to know what it IS, as well as what it isn’t! Even if they could do an xray to start with? It’s so annoying to be dismissed as a fusspot when pain is one of the symptoms. But at the same time, some reassurance that they don’t seem too concerned.

Hi @sunlover100

I do hope your pain won’t be confirmed as bone mets but if it is there is room for positivity.

I was diagnosed nearly 12 months ago with bone mets in my spine and hip, it came very quickly after my primary diagnosis and felt like a hammer blow at the time but 12 months on I have been pleasantly surprised at how well the meds appear to be working and my body is coping with them. It did take time, I had some hair loss for about 3 months but now it has all grown back. I do ache quite often but think that is the mostly the lack of estrogen, usually gentle excercise helps. I was getting sweats but they seem to have eased off considerably now and I am sleeping through the night again.

I am on Zoladex (4 weekly injections at GP), Letrozole (daily tablets), Ribociclib (daily tablets) and denosumab (4 weekly injections at the hospital). I am in my mid-40’s, still working and enjoying my hobbies and holidays. I have slowed down a bit and making extra sure to eat healthly and keep active but for you and anyone else reading this who is or might be diagnosed I’m not going to say hearing that news is easy as its not but my view is you can’t change it so you have to make the best of what you have and in some ways that can actually be a good attitude to live life.

Best wishes x

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Thanks Cubby3,
Your post cheered me up this morning.
Although my ribs seem fine on X-ray, I have a lytic lesion in my left head and neck of humerus which is likely to be metastases.
I am, currently, enduring the long wait for CT scan of chest, abdo and pelvis to see if there is any other spread or new primary, followed by an oncology appointment.
My life feels on hold at the moment and I feel constantly sick and weak with the worry of it all.
I check for positive stories every day on this forum, so thank you for yours xx

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Hi hope44441, the waiting for results and diagnosis is very stressful. Is there anything you can distract yourself with? Are you able to get away for awhile? I’m in the lucky position of being retired, and not having any dependents; I’ve been able to go away for a few days between appointments, and when appointments have been postponed. This really helped me cope with the waiting, I felt like I was making good use of my time.
At first when I was at home waiting, I reduced my stress and distracted myself doing cross-stitch whilst listening to audiobooks. Surprising the one that helped the most was Harry’s autobiography ‘Spare’.

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Hi Cubby3, it is good to hear your realist and positive attitude, and that you are still doing well after nearly 12 months on the treatment, I hope it may continue. I’ve recently started on the same treatment (but not Zoladex, as I’m post menopausal).
I spent far too much of my 30s and 40s worrying about getting cancer eventhough I was having annual NHS mammograms in my 40s. Then at the start of my 50s I was elated after passing the age my mother died of cancer, and then the ages 3 of her brothers died of cancer, that I ended up less vigilant by the end of my 50s. I had my NHS mammograms every 3 years in my 50s but I on hindsight should have gone private for annual ones.
Anyway I can relate to the attitude of trying to making the most of it. Now that I have stage 4 cancer I seem to be less worried generally and I’m trying to live one week at a time and I’m enjoying the fact that I currently feel well, but it’s early days for me. The fact that I’ve stopped worrying about living to 90 and my teeth falling out, is quite revealing!

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Glad to read the positive stories and outlooks of everyone. In terms of living to 90, it would be great to live to that age and in perfect health, but not very many people do. A family friend is 90 and struggling caring for his wife, also 90, who has dementia. I really wouldn’t want to live so long I’d end up in that situation. However I do want a good many more years yet, either health or with MANAGEABLE health conditions.

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Hi @hope44441

The uncertainty is the hardest bit and no one can tell you not to worry. You just have to know that whilst waiting for scans and results is hard you are being looked at and you will get answers, and when you do there will be a way forward.

I hope that these messages will give you the confidence that a diagnosis like this as hard as it is does not mean life stops now. You have to deal with it in your own way and be gentle and acknowledge your emotions and those who love you. If you can find a way to do that then you can live a fullfilling life. None of us know how much time we have whether we have cancer or not. Being told that your life might be shorter than you imagined focuses the mind on what is important.

Take care and like @inmybones says try if you can to do things you love that will distract you while you wait for answers, but if you need to have a cry and treat yourself to chocolate that’s ok too!! xx

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