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Bone mets - please join in

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Re: Bone mets - please join in

Hi Biker

I had breast cancer and a mastectomy of my right breast last year. It was HR poss 8/8. No apparent spread to lymph nodes, so no chemo etc.

I've had a really sore aching right leg for a few months, I mentioned it my consultant and he said he thought it was mechanical rather mets but if it persisted he'd send me for a bone scan.

I've since had a mamoplasty on my left breast last week and due to see consultant again next week.

I still have the pain, my leg feels weak and it's bad when I'm in bed at night as well, so not just when I put weight on it.

I know it might be hard to describe, but can you tell me what your leg pain was like and how you managed to get scanned?

Thanks

Helen 😍

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Thank you, all the best for your upcoming treatment. 

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Oh biker I’m so sorry, although if they think your heart is suffering then it was for the best. I had a dodgy ecg last week it was 456 which is only 6 over but it’s still worried me. I’m nearly at the end of my first cycle of treatment so I will have my 7 day break soon. There will be treatment options for you so please don’t think there won’t be xx

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I originally had breast cancer her pos 3 with lung mets , to cut short I was on kadcyla and was working very well, unfortunately it affected my heart function so they stopped treatment . This was away back in August but scans always came back with no more growth. Had an aching leg the  had a scan the they discovered the lesion. I keep saying was,that because I have been off treatment. A nightmare just trying to process all this. Thank you for listening feeling so out on a limb. 

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Hi biker, 

sorry to hear about your diagnoses it totally sucks, I’m only about 6 weeks post diagnoses and feeling pretty crap most days but the girls on here will keep you going and are all so supportive and have positive stories. What’s your diagnosis? Sending you a big hug xx

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Just found out I have a lesion on my pelvis so to read some positivity helps regarding treatments. See oncologist this Friday so hope to feel better to hear there will treatments available. Totally lost the plot thinking the worst.

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hi catokitty, 

 

do mind me asking your diagnoses and treatment plan? I was only diagnosed with spine mets about 6 weeks ago and I’m still struggling xx

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Hi Yorkie 1 I am sorry about your bad news but please remember there are lots of treatments for bone mets which can keep us going for a good number of years.  It is a horrible shock but hang in there and we are here for you 

Jane xx

 

 

 

 

 

 

 

 

 

 

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Hi yorkie1, 

im so sorry about your diagnoses it’s allot to get your head around. I’m still not dealing with it well either, I’ve been told it does get easier with time and I’m hoping this is true. What is your treatment plan? Sending you a huge hug xx

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Hi all,

 

Just had the results of my PET scan and its shown extensive mets throughout my skeleton. 

 

Feeling so scared

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Oohh that is a lot of jabs in one day lollipop!! I’m off for the dreaded zoladex shortly!

were you advised to have a pneumonia jab? 
J xx

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Hi Jennie60, 

I had my fluvestrant jabs yesterday and also my zoladex and an pneumonia jab!! Feeling pretty crappy today so it’s a sofa day for me. I think that’s to much in one day but hay ho. Hope your jabs go well xx

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Thank you for your reply. I feel much better today. What a roller coaster it all is. I'm desperate to stay well. My daughter is expecting her second baby in September and for me my girls and grandaughter are my world. My husband has always said he knows he comes last 😂. Hopefully the bone pain is the Meds.  Off for my fulvestant jabs in a bit. At least when that hurts we know why. Lots of love jennie xx

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I’ve also had back pain on Ribocliclib so I do think it’s normal xx

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Hi Jennie, I’ve just finished my first cycle of Ribociclib, my mets are in hips, ribs and spine and recent progression to liver hence the reason for these new meds.

I haven’t had bone pain for a good while now but this week I have had lower back pain which mainly only comes through the night for some reason?? It does say on the side effects of Fulvestrant and Ribociclib bone pain so I’m thinking (hoping) it is down to the meds so I’m not particularly stressed about it but I will mention it next week when I see onc for next cycle.

Also she told me that the guide lines for Ribociclib are, ECG and bloods done fortnightly every 2 weeks for the first 6 weeks then bloods monthly and no need for ECG. My bloods 2 weeks ago were low but not too low that I had to stop but but a few weeks before that they were and had to have a week break, ECGs have been fine though,

hugs J xx

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Hi lollipop. I haven't had Ecgs for ages. I just have my bloods checked and thankfully up to now all good. Hope the onchologist sorts it out and you can continue with meds. I'm happy with the meds and just want to know that they are working. It's a worry that I'm having this discomfort at the min though. Lots of love xx

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Hi Pawsome

Started second cycle on monday.  Do you not get hair on brush and thin hairs falling on wash hair days?  I find i do

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Thanks Jennie

My pain is on my left side which is the opposite side to my pleural effusion. I’m guessing that the rib or surrounding tissue must be inflamed which is why the steroids eased the pain (although what do I know?).

 

Hope your next scan allays some of your fears xxx

 

xxx

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Hi jennie60,

 

i saw on your last post that your also on ribociclib and fluvestrant jabs, I started my treatment nearly 2 weeks ago and had an initial ecg which was fine. I had another yesterday and it was 458, the nurse said they like it to be 450 or under so I’m borderline! She’s sent it off along with my bloods for the oncologist to look at to see if he thinks the ecg is ok and also my bloods. Have you had an ecg that’s slightly off? It’s really panicked me as I’m only new on these drugs xx

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Hi yes I've been feeling some discomfort in my right ribs. Not pain exactly. My mets are liver and lung too with a hot spot in my lower spine. I'm on ribiciclib and fulvestant plus bone strengtheners each month. The discomfort comes and goes. I sleep well but knowing it's neareally my liver is a worry. I had a bone scan in November and a ct in January. My next scan is at the end of the month. Hope you feel better soon. I hate this disease xx

 

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Hi Everyone

 

I’m after a bit of advice please.

 

I was diagnosed with mets in my bones, liver and lungs at the beginning of February. The reason I initially went to the GP was due to a pain in the lower left ribs (on the opposite side to the original diagnosis in 2010) and breathlessness.

 

The breathlessness was the result of a pleural effusion which has since been drained and seems to be ok but the rib pain is still present.

 

I started treatment 2 weeks ago (Docetaxel, Herceptin and Perjeta) and as soon as I started the steroids the rib pain got much better, however over the last 3 days it has been getting steadily worse again.

 

Has anyone else experienced this and if so did treatment ease the pain at all in the long term? The Oncologist has suggested they might give me bone strengthers as well but I don’t know if this will also ease the pain.

Best Wishes xxx

 

 

 

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Hi yorkie1, 

sorry you’ve had a bad day I have lots of those to  unfortunately. Do you have good friends and family around you to help? I’ve had a rubbish day with one thing or another and I’m feeling very fed up. Let’s hope tomorrow is better for both of us. Massive hug xxx

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I completely understand how you feel.

 

I'm 32 and a single mum of one. I've had an up and down day today. Feeling ok and then a few tears which isn't like me. I'm normally not a crier at all! 

 

Tomorrow will be better x

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I had no symptoms at all and I still don’t now, they are fairly small lesions, it was picked up by chance on my first ct scan i had after I got my breast cancer diagnoses but they couldn’t confirm it as it was so small. I had 4 rounds of ec chemo and then had a scan and unfortunately the chemo highlighted the bone mets 😢 and more have shown up. It’s a rubbish hand we’ve been dealt. I’m only 35 with 2 boys of 10 and 14, I’m also a single parent xx

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Lollypop84

 

That's good to know about ER+ thanks! Also great that you haven't had any side effects, really positive. Did you have lots of back pain before your diagnosis? 

 

I should find out next Thursday the 19th hopefully. X

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Yorkie1

same as me but I’m grade 2..lots of treatment options for er+ ☺️ I’m on a combination of things I just hope they are working!! I’ve had zero side effects so far which is good, I know what you mean about bad news as I’ve had the same as you. Every appointment I’ve had I’ve been told bad news I just shut down and go into a daze if I’m honest, then come home and cry. When will you find out your treatment plan? Xx

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Hi Lollypop84

 

Thanks for your reply and hug 🙂 

 

My cancer is breast cancer grade 3 ER positive but HER negative from what I can remember. Most of my appts have been a blur as I've recieved bad news at every one. 

 

There's lots of positive stories on here so I'm trying to focus on what treatment they can give and moving forward. I think speaking to people who are going through the same thing/feelings/emotions is really important. 

 

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Hi yorkie1, 

 

firstly I’m sorry about your diagnoses and I can totally relate to how you feel, I am now 5 weeks on from secondary diagnoses and still struggling allot. I also have spine mets in a few places. What type of cancer do you have? I have been taken off chemo and put on hormone suppressant tablets and injections as my cancer feeds off oestrogen so the treatment I’m on halts that and the hope is to contain it. Sending you a big hug i feel you’re pain I really do xx

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Hi all,

 

I've been reading through these forums for a couple of weeks now, working out when I'd be brave enough to post. Turns out, today is the day!

 

I was diagnosed with primary BC grade 3 in January and following an abdo/chest CT scan, it has shown that it has spread to most of my spine. 

I met my oncologist last week and he requested PET scan, pelvic CT and MRI scan, all which will take place this week before he decides my treatment plan. 

I feel like I'm in a dream most of the time or it's happening to someone else. Can anyone else relate? 

 

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Today  started my second cycle of Ibrance.  I keep taking Letrozole.  Tumour markers were seen to have gone down last week in clinic.  PET will be performed on 30 April.  Hair issue still concerning me.  I have noticed more hair shedding especially when I wash my hair.  In your reply a few weeks back you mentioned you waited for side effects to come, do you mean by that  that you also did not experience shedding hair/hair loss/thinning?

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Yep I’m with you totally, it’s so hard not to panic, I get aches all over and instantly fear the worst. Please let me know how you get on I will be thinking of you xx

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Hi 

Thank you for your reply. 

Diagnosed 2016, had lumpectomy, chemo and rads. Currently on letrozole and zoladex.

Impossible not to assume the worst! And the more I think about it, it becomes more sore!

Having gone through bc before, I know this is the hardest part.... Tests and waiting. Just really struggling atm😢

Hugs xx

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Hi sue, 

i don’t have rib mets but I have spine. We all think the worst i do that all the time as my journey so far has never gone my way..I have been told bone is best as it can be well controlled for a long time I hope! Try not to panic until you know for sure although I know that’s impossible, when was your original diagnoses? Sending you a big hug xxx

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Hi Ladies

I hope you don't mind me popping in....

I've been having rib pain, so oncologist requested bone scan. This showed up as a hot spot. At the moment, they don't know what it is, so I'm also having a ct scan and bloods taken. Obviously I'm panicking, and assuming the worst. I was wondering if anyone has Mets in their ribs ?

Hugs xx

 

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Nicky08, I'm so sorry, I've been meaning to reply to you since I got the diagnosis from my scans and to thank you again for your support. My CT scan was clear and my bone scan shows a small spot to my sternum from my lymph node-"a nibble" my onc said. Unfortunately this can't be operated on, so I'm no longer having a mastectomy as originally planned (not for the foreseeable future anyway) and I will be starting IV chemo, probably next week, although this is palliative chemo, rather than a cure. Received the onc's letter today and it is referred to on my letter as a loco-regional recurrance. My onc is hoping I can have a new chemo that has only just been approved, Atezolizumab and Nab Pacilitaxel if my tumour is PD-L1, although my onc said i've only got about a 40% chance of my tumour being this. If not, I will be having Carboplatin, but I don't know how many cycles, perhaps it depends on how I respond to it. 

I hope you are keeping well and side effects from your treatment are manageable and not causing you any problems  x

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@Pawsome wrote:

Hi, I remember the same thing after starting palbociclib. I kept waiting for the side effects to start after hearing they could be quite bad. Tbh mine never did. I’ve had a few days where I’ve felt bad due to headache/nausea at the start of each cycle but things have settled down now I’m on cycle 4. My team said the goal was to make me feel like I’m not actually on treatment and they have lots of ladies on their books who feel like that. I originally thought they must be talking nonsense but actually after a few months and things settling down they were right. Most days I don’t feel like I’m on treatment and I’m able to have moments in the day now where I don’t think about the cancer. My hospital have around 20 ladies on palbociclib and they’re all dealt with by the same person so they’ve got quite a bit of knowledge about the drug and side effects - more so than my BCN - so I speak to them if I have any problems. But as it’s new to the NHS they are constantly learning about how it affects different people. I’ve got lung mets and bone mets (spine, rib, sternum and pelvis).  I’ve also spoken to lots of ladies on this combo and whilst it doesn’t suit everyone a lot of ladies are doing very well on it xx


Thanks so much for replying.  I have just taken 125 Ibrance (day 5) and still waiting for side effects just as you say. I am a bit obsessed with my hair though, and, even counting how many hairs I lose when I comb in the morning and at night and taking note of it.  I used cold cap 4.5 years ago during chemo and retained as much as 50 - 60 % of hair,  worked hard on it and would not like to lose my thick hair now.  The hair issue I sent just an addition to the anxiety of having been diagnosed with secondary bc. 

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Hi, I remember the same thing after starting palbociclib. I kept waiting for the side effects to start after hearing they could be quite bad. Tbh mine never did. I’ve had a few days where I’ve felt bad due to headache/nausea at the start of each cycle but things have settled down now I’m on cycle 4. My team said the goal was to make me feel like I’m not actually on treatment and they have lots of ladies on their books who feel like that. I originally thought they must be talking nonsense but actually after a few months and things settling down they were right. Most days I don’t feel like I’m on treatment and I’m able to have moments in the day now where I don’t think about the cancer. My hospital have around 20 ladies on palbociclib and they’re all dealt with by the same person so they’ve got quite a bit of knowledge about the drug and side effects - more so than my BCN - so I speak to them if I have any problems. But as it’s new to the NHS they are constantly learning about how it affects different people. I’ve got lung mets and bone mets (spine, rib, sternum and pelvis).  I’ve also spoken to lots of ladies on this combo and whilst it doesn’t suit everyone a lot of ladies are doing very well on it xx

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@Pawsome wrote:

Hi 4748- I’m on the same treatment as you and currently on my fourth cycle. My first scan shows the treatment is working and most of my mets have shrunk by 50% after being on treatment for just under three months. I also wanted to respond to your concerns about your hair thinning concerns - I know this is listed as a side effect and some ladies do experience this - but my hair hasn’t thinned at all. I have really thick hair and my hairdresser hasn’t noticed any difference in its thickness at all. The only think I have noticed is that is is growing a lot more slowly but that just means fewer hairdresser appointments. So it might be worth waiting and seeing what happens with your hair before getting it cut unless you wanted a change in hairstyle anyway? I’ve not done anything special with mine - still using exactly the same shampoo and conditioner and also blow drying and styling it everyday the same way I did before starting treatment xx


Many thanks for your reply.  I have a solitary bc mets in my T-9 (praying there will me no more since last scan and starting treatment 4 days ago with Ibrance and 11 day shift with Letrozole).  I was very close to spinal cord compression and had emergency x10 sessions of radiotherapy early Jan 20.  I am hoping to get SBRT in May but first need pet/ct done in May to review whether treatment is working.  The last few days I have picked up a little emotionally but still finding the diagnosis very hard.  Feels like a death sentence and now, as if this is not enough add on top of it the ‘hair issue’ as side effect.  I have very good hair too.  Had it cut yesterday shoulder and really missing my long hair but obsessed with checking hair loss.

I have tried looking online how soon after taking Ibrance one should expect to experience side effects such as vomiting, not feeling well, hair loss etc but cannot find anything online.  I asked one of the breast care nurses but there does not seem to be much knowledge on the drug - she actually thought it would be straight away - not sure about that.

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Hi 4748- I’m on the same treatment as you and currently on my fourth cycle. My first scan shows the treatment is working and most of my mets have shrunk by 50% after being on treatment for just under three months. I also wanted to respond to your concerns about your hair thinning concerns - I know this is listed as a side effect and some ladies do experience this - but my hair hasn’t thinned at all. I have really thick hair and my hairdresser hasn’t noticed any difference in its thickness at all. The only think I have noticed is that is is growing a lot more slowly but that just means fewer hairdresser appointments. So it might be worth waiting and seeing what happens with your hair before getting it cut unless you wanted a change in hairstyle anyway? I’ve not done anything special with mine - still using exactly the same shampoo and conditioner and also blow drying and styling it everyday the same way I did before starting treatment xx

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Hello gilly flower

Thank you for your reply. It seems there is lots of different proceduree for crushed vertebrae, depending where crushed vertebrae is located on the spine i just hope mine isnt hsrdenes in that position you know? But least finally ive been referred to someone and im thinking he wouldn't see me if he couldnt do something you know what I mean xxddd

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@Ruby2016 wrote:

Hi 4748,

I am on the same treatment plan as you (plus I also have Zoladex/Goserelin injections). I was diagnosed with bone mets less than 3 months ago so I can’t give you personal confirmation as to the efficacy of Letrozole and Palbociclib.  I do know that Palbociclib was only approved by NICE in the last few years and I have seen posts on here from ladies who have had positive results. 

However, I can personally give you my own experience re hair thinning.  After the first treatment cycle, I lost a fair amount of hair but this has has now slowed down to just a ‘normal’ amount of hair loss.  I’ve read elsewhere that this has been the pattern with other women too. 

Best wishes xx


Many thanks for your reply.  I have very thick long hair (almost to waist length).  I will be cutting it shoulder length tomorrow though cause I do not want to see long strands in shower.  I hope I have no loss and hope treatment works.

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Hi 4748,

I am on the same treatment plan as you (plus I also have Zoladex/Goserelin injections). I was diagnosed with bone mets less than 3 months ago so I can’t give you personal confirmation as to the efficacy of Letrozole and Palbociclib.  I do know that Palbociclib was only approved by NICE in the last few years and I have seen posts on here from ladies who have had positive results. 

However, I can personally give you my own experience re hair thinning.  After the first treatment cycle, I lost a fair amount of hair but this has has now slowed down to just a ‘normal’ amount of hair loss.  I’ve read elsewhere that this has been the pattern with other women too. 

Best wishes xx

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@catokitty wrote:

Keeping positive is for me the hardest thing of all and moving on is an ongoing process.   I have got back to most of my normal activities and am doing my best to just live in the present and not stress about the future, enjoying each day.  I write down three positive things every day and I find this helpful.  It's great news that your radiotherapy treatment has been successful.  Good luck with next week's appointment xx


s@catokitty wrote:

Keeping positive is for me the hardest thing of all and moving on is an ongoing process.   I have got back to most of my normal activities and am doing my best to just live in the present and not stress about the future, enjoying each day.  I write down three positive things every day and I find this helpful.  It's great news that your radiotherapy treatment has been successful.  Good luck with next week's appointment xx

 

Since i last posted i have been seen at the Royal Marsden in London.  They have recommended the following treatment :  Ibrance (Palbociclib), Letrozole and Denusomab.  Started Ibrance yesterday and Letrozole 9 days ago.  Still waiting for Denusomab.  SBRT not offered at Marsden however, will have petscan in May and depending on outcome MDT at home might consider me having it done in Spain.  At present apprehensive about Ibrancr an Letrozole working seeing i have not had biopsy and apprehensive about hair thinning/losing hair with treatment.  


 

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Hiya Cazzy,

 

I recently had something called a corpectomy for a collapsed vertebra in my upper spine, near the neck.

 

Basically they removed the vertebra that had turned all soft and spongy and put a small metal cage with pins in to stabilise my spine. The surgery took around 4hrs. Recovery was fine and I was actually surprised at how quickly I was being told to mobilise and get back to normal (without overdoing it of course). I stayed in hospital for 3 nights after surgery. It was a really good procedure and I felt loads better afterwards, it really helped with all the pain I'd experienced prior to the op.

 

Good luck with your spinal appointment, let us know how you get on xxx

 

Lambo - sorry to hear you're in so much pain, it really makes everything harder doesn't it? Sending hugs xxx

 

I have been using hypnotherapy and music for pain relief - a bit alternative I guess but it seems to help me and there is some scientific evidence that suggests both have positive effects on pain relief for people with cancer. I'll see if I can find the links in case anyone is interested.

 

In terms of the travel insurance I'm sorry to say I have no idea! It does seem odd!

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Hi I've not been on the forum for a while.  I was diagnosed in April last year with bone and liver mets.  I have mets in all my bones, but was wondering if anyone knew why there is a focus on mets in the skull.  I applied for travel insurance and was specifically asked if I had mets in my skull!!  As I say I've got mets everywhere but they were only interested in the skull.

i also take OxyContin and oxynorm for pain relief but still find the pain in my hips and knees unbearable.  Anyone found anything that actually makes them pain free.

i hate this disease, I'm only 48 but feel about 98. X

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Hi Nicky, I just wanted to thank you for taking the time to reply to me. At the moment I'm finding it hard to think about anything other than the scan results next Tuesday, I suppose that's normal though! Part of me doesn't want to get them because I'm afraid of receiving bad news, but equally this living in limbo is taking it's toll on me too. I suppose really the technician on Tuesday shouldn't have told me what was being looked at in more detail as it has increased my anxiety, but it has given me some time to try and prepare myself a bit for potentially mets. Since the scan I have been more aware of my back, but I suppose that's not an unusual reaction x

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Hi Jencat

It will be very hard, if it is mets, to cope at the beginning.  We have all been there and understand the fear, shock and sadness. However I think all of us, me included, felt better once a treatment plan was in place and also when we knew what we were dealing with.   The main thing though (again, if it is mets) is not to blame yourself.  There is no way you would know.  I have actually been asymptomatic (ie no symptoms) pretty much the whole time before and after mets were diagnosed.  I also didn't know I had a recurrence and even the breast surgeon thought it might be scar tissue and it was only a biopsy that showed it was a recurrence. They investigated after a routine mammogram showed up an area, which turned out to be a small recurrence. The other advice would be not to Google anything!  Statistics are way out of date.  Stick to informed websites such as this one and this forum has been invaluable over the years to swap stories with real women going through the same issues, treatments ups and downs.  

I hope you get some answers soon and that it isnt bone mets, as I said in my earlier post, however we are here to help if it is.  

Nicky x

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My crushed vertebrae was due to my cancer 

 

Yes that what my dad believes inksy have the injecting of cement has it helped you? I'm small anyway hahah xx

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@Daylightdancer666 wrote:

Helloo its ne cazzy if anyone remembers me im the one who hss suffered alot with back pain which we believe is due to ny crushed vertebrae ss hsd radiotherapy part of ny back which was t part and have had radiotherapy oreciousky on lumber thorasic femur skull and neck which has worked amazingly pain relief was such difference. Anyway my medical oncologist referred me to spinal surgeon who said he wanted up to date mri scan which I had last week anyway today i received letter with appointments in two weeks tl see him

 

Has anyone else had surgery on crushed vertebrae 

 

Xxx


May i ask, are you saying your crushed vertebrae are as a result of previous radiotherapy to back?  

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Hi, I had surgery for  fractured vertebrae which was decompression and fixation.  They shored up my spine with a combination of carbon rods, screws and cement.  I believe for crushed vertebrae there is a procedure called vertebroplasty or something similar where they inject cement into the vertebrae.  It is a short operation and just requires an overnight in hospital.    A friend of mine had it done last year for vertebrae damaged by osteoporosis not cancer and she made a very good recovery.  My spinal surgeon was very straight talking and clear about the surgery.  I found the surgeons to be much more upbeat than the oncologists.   One thing is people often lose a bit of height as the vertebrae are compressed together.  Good luck with your appointment xx