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Bone mets - please join in

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Re: Bone mets - please join in

Hello Anne, I don't have secondary's but just wanted to add that my mammogram was clear at diagnosis too, my breast cancer was found via ultrasound and I was told it could have been 5 years before it was detectable on a mammogram which means 3 years on I could still be walking around none the wiser as I'm only 49 and not in the screening program yet. 

I see you have lots of support from our lovely ladies here and I hope once you are over the shock of your diagnosis you will find the strength with their help to move forward. Xx Jo 

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Thank you.
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Anne, it is very early days for you and it’s natural that you feel like you do. Believe me I was in a right mess when I first found out! What I was trying to say was even if you’d had your mammogram those years ago, it doesn’t mean it definitely would’ve been found, tumours have to be a certain size to be detected, same goes on CT scans. Stay strong, Kxx

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I am trying so hard. You ladies are so good at it!
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I’m another who was diagnosed straight to stage 4. I had been going to my GP practice for around 4 years saying I could feel something, not every day, but things didn’t feel right. I was already having mammograms which were clear, and they still are! Eventually after I insisted something else was done, I was sent for an ultrasound scan, that showed a small cyst, which I queried but was assured there wasn’t any blood supply and it was just a cyst...I will now never know if that was right...as I still wasn’t convinced I booked to see a different GP at the practice, she again couldn’t feel what I could but said she could see I wasn’t happy so sent me to breast clinic, and I finally got my diagnosis! 

I’m just saying that sometimes even tests are inconclusive, my mammogram was still clear on the day I was seen in breast clinic because of that I think the Radiologist only did the biopsy because I was there but again, he was sure it wasn’t anything to worry about! Thank goodness he listened to me and did it!

I’m often asked if I’m angry about it because 4 years is a long time to be told there’s nothing wrong with you, when there clearly was, but what good would that do? Yes, I have moments of what if’s but.....My Onc tells me that clear mammograms, when you have bc, are not as infrequent as you might think. My GP practice is also a very good one, it was just bad luck! 

I did all the examining and testing, so please try not to beat yourselves up and stay positive! Kxx

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There are a lot of treatments now for mets and I am trying to be hopeful. I am sure that the best thing would be to live one day at a time with a hopeful heart but it is hard to do
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I feel for you and hope very much that you find the peace which I’m finding so elusive. We have no cancer in our family either. My lovely mother in law is 86 and my parents are 80. They are so sad. Try to rest and find peace x
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Hi Anne

Like you I was straight in at the deep end never had a primary just a pain in my leg which turned out to be sbc. Anyway 1 yr in I am still angry as never had an offer of a mammogram you have to be 52 where I live and am now 52, can’t wait for my screening letter! Anyway it is an up and down journey once you get a result and treatment plan in place you feel better as there is hope. If it turns out not to work you get all the anxiety again same as waiting for results. All I can say is our overstretched nhs do a fairly good job where I live hope your will too. I work full time as much as I can and try to do as much as I can. My husband refuses to talk about the inevitable or bucket lists as he gets as anxious as me. Good job our kids are there to hold our hands. I say to my parents every day why me when they are fit and healthy and we have no history of cancer in our family but can’t change anything just carry on. You will have good and bad days but this forum helps . It may also help you to meet others in the same position if there is a meeting near you . Chin up . It will get better to cope with . Wendy x
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Thank you. It’s much appreciated x
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Anne, we all understand. We're thinking about you and sending you love.
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That is very honest. I too am so worried about my parents. They can’t cope with this but then not can I. Counselling is a good idea. I need to come to terms with where I am rather than thinking about how I got here but it’s so hard and I keep crying
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Anne, I can only echo what the other ladies have said. I totally get that you are blaming yourself. When my recurrence happened last year, after I realized something was wrong, it took me several Months before I got around to seeing my GP. Meanwhile it was getting more and more obvious, but I kept kidding myself that it was nothing really. Then I blamed myself because if I'd reacted quicker, maybe it wouldn't have spread. You know what? I'm a worse case than you, because I didn't just blame myself, I blamed my elderly parents because at that time all my energy was going into trying to sort out care for them and they were fighting me every inch of the way. I didn't blame them to their face, but inside I did.
So be assured, you are not alone in having these feelings. I promise you it will get better but you have to take it a day at a time, sometimes only an hour at a time.
Have you asked your GP about counseling? It's helped me a lot and should be available to you on the NHS, but waiting times depend on where you are. But please do think about it. I had to wait several weeks to see a counsellor, but just knowing it was on the horizon helped me to hold on.
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No one seems to be able to reassure or calm me. I can’t seem to get out of this slump. The oncologist didn’t seem very encouraging. I have three very small areas - two spine and one hip. No pain. I’m sorry O am so low
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Anne

That doesn't say you had bc at age 47 or 50 ..maybe mammo would have been clear anyway ...so don't feel guilty ..you are still young and strong to deal with all this and the treatment you are starting.
Hugs ☺☺☺☺
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I am 53. I was called at 47 as a trial but didn’t go but I don’t feel bad about that one. I was then called at 50 and didn’t go. I found the lump when I was nearly 53 and it had already spread. I feel awful. Really ashamed
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Hi Anne
Awww I have only just began to pick myself up hun, it's been about 10 months for me...diagnosed last June, had mastectomy and reconstruction for 6.5cm lobular.
Node neg, had no chemo because onco test came back low.
I've suffered so much pyschogicaly since.. but I refuse to put myself through of any more...and am intent on enjoying my life xx
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Anne

There are loads of ladies here that got dx with primary and secondary ..you are not alone. How old are you now ? How many mammo appointments did u miss ?
Hugs xx
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I have been diagnosed with primary and secondary at the same time by the way which I feel so ashamed about. It doesn’t seem to happen to anyone else
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How did you cope? I just can’t seem to cope with my feeling of guilt and worthlessness. I feel I have chosen this wilfully.
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Hi Anne

NO ONE ASOLUTELY NO ONE could have been angrier at themselves than I was at first diagnosis of primary in 2013. I hated myself for not noticing a huge lump literally right under my nose. I threw my energy into putting my affairs in order (even then!). Even that huge degree of anger does pass. I know this may be no consolation to you but I can honestly say I understand your feeling of anger completely although we all deal with it differently.

Pippin

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Anne

I have always been laid back with health ..a paracetamol girl when needed ! When I got hip pain ..popped paracetamol and thought it old age !!
Even now I don't always mention things to oncologist that I think are trivial.
My old oncologist has now retired but I always remember her saying. .not all pain is cancer related

Focus on the treatment and going ahead ..you were just unlucky with bc.
Hugs
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You are all so kind but I do blame myself. I know I need to move forward. You are all so right x
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I didn't get called for a mammogram at 50 as the system was a year behind so at 51 ..it was found and had been there for a while ..so I can't blame me but the whole system ..
But we can't go back ...have to go forward and deal with it all ...
Don't feel guilty xxxxx💗💗💗
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I hope your treatment goes well and thank you for thinking of me x
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Thank you. I think I may well be in shock. I’m frightened of the future and spoiling the present with my constant worrying. I’ve never been fat but perhaps a little chubby. Cancer has certainly sorted that out - I’ve worried a stone away! The people on this forum are all so measured and thoughtful in their responses. I suppose at some level we are all trying to understand why this happened to us. No one deserves this and it’s very hard x
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Hi Anne
It's so easy to blame yourself and early on we all search for reasons 'why"
I was fortunate enough to be picked up on a routine mammogram at 49 but still developed secondaries 4 years later. They were so advanced I suspect the mets had spread early on.
As the others.have said, it's all part of the shock and adjustment but it's best to focus on each day and look for the little blessings that come along. I have found the only way to cope is a day at a time!

Yesterday was difficult but it's gone now. Today I will hopefully be having my first eribulin in the next hour!
Thinking of you Anne
Hugs xx
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Will do.
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I agree Ann don’t blame yourself...it won’t change anything and upsetting yourself could make things worse....so leave the past as the past, draw a line and step forward into your new care plan ....l.things can only improve once that’s under way.,,,,,

 

‘’I have always been a worrier, but not once did a worry help me!

 

come and chat to us about how things go

 

M😘😘😘😘

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Thank you. Good advice x
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Aw Anne please don't blame yourself but this is something I also did - why didn't I find the lump sooner why didn't I insist for a scan sooner etc etc guilt is a normal part of accepting our situation. Try not to keep looking back as you will drive yourself nuts. Concentrate on getting through each day on taking care of yourself. There is no way anyone deserves this. Hugs x
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I just don’t seem to be able to stop blaming myself for all this and then I just cry and cry. I feel unworthy of all the kindness and sympathy because I failed to have a mammogram when I was 50 and by the time I found the lump it had spread. Now you all know you may be less sympathetic. I thought I was a responsible person. Sorry ladies I shouldn’t be burdening you with all this!
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Thanks so much Sarah xx
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Hi phoebe
So frustrating and exhausting for you - I really hope you start your treatment today and all goes well.
Take care sarah x
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A very challenging day at Christies yesterday. Due to start my eribulin, but a series of errors meant the proper paperwork had not been completed so the drug could not be issued. We were at the hospital all day while they tried to sort everything out, but were then sent home.

I gather its very expensive and only given after 2 failed chemos, so there are tight controls. We have a 4 hour round trip to the hospital, so waiting for the call today to say the drug has arrived and we can go ahead!

Very stressful

Hoping and praying for a result today!!

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FF, I can't believe they wouldn't give you bone juice! Crazy. I hope you get on ok now you've finally got it.
I'm already a big fan of Udderly, or cow cream as I call it! Started using it when on docetaxel, and am now getting through gallons of the stuff. One time I was in hospital for a few days and the doc shook hands to be polite, and then started calling the nurses over to shake hands with me to see how beautifully soft my hands were. Of course the cow cream was in pride of place on the bedside table. Everyone was giggling!
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Anne, it's the cancer diagnosis that's making you cry. And no wonder! Four weeks is no time at all to get your brain around all this. Sometimes you'll cry, sometimes you'll feel better and enjoy life, trust me!
I was on letrozole which is very similar to anastrozole, I didn't suffer at all except for the hot flushes which improve in time. I was on it for five years and I was fine. Hang on in there! Big hugs.
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Hi Anne and all ladies here
Just wanted to say hi - I have posted on another thread but thought I'd join you here. I was diagnosed primary 2011 and secondary may 2017. I have mets to pleura liver and bones treated with chemo currently on letrozole + denosumab injections weekly draining of chest drain.
When did you start anastrazole Anne - I believe it can take a few weeks for side effects to become apparent although everyone is different. It can cause low mood but being diagnosed with cancer is such a traumatic time I'm not surprised you are weepy - I was hysterical at times the first few weeks it was a very dark time but it does lift. Give yourself some time to adjust and talk to those around you be gentle and kind to yourself. Make little plans to do nice things even just a walk and coffee with friends - lovely day here today looks like spring is on its way. 🐑🌝
Sarah xx
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I hope it goes well. I keep posting in random places. Sorry! I am keen for any thoughts on Anastrozole? I am really weeps since I started taking it. Is it the cancer or the drug? I can’t seem to do anything but weep. Four weeks ago I was a happy working woman.
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Had my first "bone juice" today. If you all remember I had broke my back from hiccups due to osteoporosis. The osteoporosis they feel was damage from all the years of treatments for cancer. The good news of all this is they had told  me at one point that I had cancer in T-11 vertebrae, which they then proved there was no cancer in it. My surgeon wanted me on "bone juice" to strengthen my back. He said I could use my oncologist or go to a rheumatologist. I talked with my oncologist and she said bc there,was no cancer that I sho u k d have a bone density test. I did and the bone density said I was in the normal ranges. The oncologist said I didn't need the "bone juice" bc I wasn't at great risk of fractures. I was like WHAT?? She said insurance would only pay if I was at risk! I about lost it with her!!! I'm like do you remember that the reason for all of this is the MRI said I have osteoporosis and 2 fractures. Which I had to have cemented and pinned to stableize them. She said she would approach the insurance company. The very next day I got a phone call that I was approved for an injection called Prolia. It is given once every 6 months. It is new in the US. It was approved last June. It is a form of denosumab. It was given in back of my arm. My arm got sore and up into my shoulder about 15 mins after getting it. We will see how this goes. FF

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Tatyana, Sometimes it does take a bit for the drugs to kick in. One of my treatments the scans weren't what they were hoping for after 3 months. The next scan at the 6 month mark was the best results I ever had from any treatment. Also my very first treatment they tried didn't work at all. Keep your feet lathered up in lotion. Udderly smooth is one of the best creams. Comes in a black and white cow print container. Suggested to me by lady who was on this forum. She took capecitibine (xeloda) for like 6 years. You can get it on Amazon. Hang in there. FF

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Good news. Very pleased.
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Riversidedawn, Yahoo! Banging my pots and pans for you! FF

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So pleased for you too Linda!,!!😃😃 It was a long wait but at least they told you over the phone, my hospital won't do that but they are quick to get answers (not a private patient but you are well monitored on a trial).

 

My CT scan is also stable! So I'm still on my trial for now, phew! Good wishes to everyone, it does feel like spring may be here?! x

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Linda, really pleased for you, now you can enjoy yourself and give yourself a lovely treat,

lots of love and hugs

ramade xx

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I think we probably all expect the worst because being diagnosed is such a trauma. It must take time to regain hope and any sense of trust x
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Thanks Linda! My results were inconclusive, the affected lymph nodes have grown but it's possible that this happened after my previous scan but before I started on capecitabine,as there was a 3week gap. So we can't say for sure whether the cape is working or not. But as I'm tolerating it very well, the onc wants to give it another one or two cycles and see what happens, and meanwhile they'll keep a close eye on me. I'm happy with that, as naturally I'd been expecting the worst! (Does everyone do that?)
Best wishes to all.
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Afternoon ladies

Thank you all very much for the kind words. It means alot

Good luck Tatyana for your scans results today.

Linda

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Riversidedawn, brilliant news (I’ve already congratulated you on the MRI thread)
Hugs Janette x
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Linda and Riverside, good news both of you, well done! Enjoy the feeling!
I have scan results today. Am I nervous? Me??!
😂
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Linda, congrats on the stable Mabel results!!!! Really pleased for you.
Hugs Janette xx