63389members
333530posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

Member

Re: Bone mets - please join in

Hi Kate21 & bon.....

 

How are u? Take care.....

 

silver...x

Member

Re: Bone mets - please join in

I don't know that drug. Mine are Denosumab injections & Letrozole. There appear to be such a variety of onco. drugs. Bestest luck with your bone scan. How long do u have to wait for results. I'm in a whole lotta pain.....awaiting pain specialist appt....xx

Member

Re: Bone mets - please join in

I have been on exemestane for nearly 3 years. Had primary in 2009. Bone scan on Thursday. Last one was 16 months ago. Have been feeling a bit unwell this month. Fingers crossed. x
Member

Re: Bone mets - please join in

Hi bon,

 

How long have u notched up? And where are u in your t'ment regime?? xx

Member

Re: Bone mets - please join in

Hi bon,

 

As a relative newbie, I'm learning loads on this forum. Can u elaborate about the consultant to GP ball passing...please..xx

Member

Re: Bone mets - please join in

Dear Silver

Buck passing all round then. Sorry I was telling you stuff you already knew. I don't have any personal experience of our hospice yet but I am surprised at your hospice's response to you.

 

This ball game berween consultants and GPs is not uncommon.

 

Bon x

Community Champion

Re: Bone mets - please join in

Ok silver...that’s pretty strange as my hospice outreach team have said they would be able to help if need be..the onc prescribed something, but I need to try it.the team came out to my home to assess me and offered to look at my drugs...they have doctors employed by the hospice, who. I can chat privately / independently if I’m concerned about an aspect of treatment and they offer Reikhi and other therapies at the hospice if you’d like them.
The team visit during a 24 hour service.
Member

Re: Bone mets - please join in

dear bon,

 

Many thx for your ever so prompt reply. I undestand now. My oncologist just keeps telling me to contact the hospice for pain relief. So what has just happened to me is unexplainable!!

 

The Director of my hospice wrote me an email saying she is not an expert in chronic pain and discharged me to my G.P.

 

I'm gobsmacked & I'm never ever one to complain...it appears I'm not terminal enough. I do have a multifactorial presentation...high b.p., diabetes. inflammatory arthritis and Max of course.....xx

 

Member

Re: Bone mets - please join in

Hi Silver

You probably have a hospice local to you. Most people think of hospices as places where you go to die but hospices do far more work in their communities supporting people to live as long and as well as possible. My local hospice requires a referral from a GP or consultant. They are good at things like pain relief. Maybe you can ask your GP about your local hospice.

I'm sorry your pain is bad and hopeyou can find some help

Hugs Bon xx 

Member

Re: Bone mets - please join in

Can u please elaborate...who are the hospital outreach team??

Community Champion

Re: Bone mets - please join in

Thank you Silver,,,

 

 

i too am in pain,  tummy and arms etc....I found the hospice outreach team helpful..,think they re better t pain control, so will be askiing them

 

 MOijan

Member

Re: Bone mets - please join in

@ moijan,

 

As i promised....over a week of 900mgs Gabapentin a day on top of Butec, Morphine sulphate....absolutely no pain relief.....I'm a bit concerned...seeing G.P. 2moro but she's an efficient pain-belittler so i'm not holding my breath.....I hate 'Max'!!!

Member

Re: Bone mets - please join in

Hi Moijan, how are you now? That;s really interesting from your radiologist, the ones doing my scans are lovely but secretive! Hope you're managing.

hugs Ramadexx

Community Champion

Re: Bone mets - please join in

Yes very good luck with the mri....I now have them thre monthly...and the head radiologist once told me they can tell if the cancer is active....as if it is they see water around the cell in the mri....fingers crossedxx

Member

Re: Bone mets - please join in

Thanks Anne, yeh finger, toes and everything is crossed here 😁
Member

Re: Bone mets - please join in

Hi Silver, hope they’ve advised you what to do? Take care, Kxx

Member

Re: Bone mets - please join in

Hello to Kate21,Woman Happy

 

 

 

Many thx for being there

take care

silver..xx

Member

Re: Bone mets - please join in

Hello Zana It’s such a hard time. We all understand that. At least they are taking care to look closely. It’s horrible waiting for results but better that you know. Fingers crossed it’s all clear Anne x
Member

Re: Bone mets - please join in

Hi Anne, seems I’ve to get another MRI scan, so hopefully I’ll get more answers with that, thanks for your reply
Zana x
Member

Re: Bone mets - please join in

Hi Moijan, yip totally confused with that result, I thought the pet scan would show any cancer but seems not 😳

Member

Re: Bone mets - please join in

Thanks mermaid, yeh im starting to see that myself on here, gives you hope 🙂

Member

Re: Bone mets - please join in

Hi Nikki, and all you lovely ladies who replied, thank you it means a lot, just a wee quick update, the doctor was on the phone this morning and after speaking with his colleagues has decided it’s to risky to do the biopsy on my spine, instead there going to do another MRI focusing on that area, hopefully it will give us some answers and let me get moving forward to fight this horrible thing. All I seem to do is wait for scans and results, it’s so frustrating as I’m sure you will all know.

thanks again

Zana x

Community Champion

Re: Bone mets - please join in

Hi angelSam

It's good that your GP is taking your worries seriously and referring you for an X-ray. I’d just like to say that I had a pain in my upper thigh (so a bit different from where yours is) and I asked for an investigation. The X-ray didn’t show any issues however (because I already had secondaries in my bones) I insisted on a CT scan which did show progression in my bone mets. An X-ray may not show up whether it’s something to do with bone mets or not so if you’re still unhappy afterwards you should push for a further investigation. A GP shouldn’t dismiss anyone who has already had BC as we (and they should) know it can come back many years after primary treatment.

Nicky x

Member

Re: Bone mets - please join in

Hi thank's for the replies and advice ☺. Had my appointment this evening, GP was quite thorough and had me doing all kinds of leg movements lol. She said she think it's to do with the hip . I mentioned the breast cancer and she agreed to send me for xray and take it from there. She has put my breast cancer history on the form. Hopefully it won't be anything sinister, but if it is, it is, and I'll deal with it. Xx

Member

Re: Bone mets - please join in

...

Member

Re: Bone mets - please join in

Hi Silver, I would definitely make a complaint. I don’t know if his secretary has the authority to open his private mail I’d say some do, but she should’ve then either waited for him, or contacted you herself and explained her position and asked you what you prefered her to do. I would agree it has been handled very poorly and while they may argue about the team” that wouldn’t wash with me. Kate x

Member

Re: Bone mets - please join in

.....

Community Champion

Re: Bone mets - please join in

Zana,,,so sorry.y

 

thatconfuses metoo..as pet scans use a radioactive sugar solution  which shows up the cancer

 

theysoak up the sugar..aas they love sugar..if a met doesn’t show up..I’m surprised.

 

also,, did you ask for a prognosis

?

 

that interest me too as they should only issue one IF you ask. They aslllo hhavve no way of knowing exactly anywayxxx

 

 

Community Champion

Re: Bone mets - please join in

Thank you silversx

Member

Re: Bone mets - please join in

Hi Zana,
I was diagnosed with extensive bone mets 16 years after initial BC. My GP virtually told me to get my affairs in order! That was nearly 4 years ago and I have found from this site and several other forums in the USA that many many ladies live with this for a long long time and new treatments coming along quickly. X
Community Champion

Re: Bone mets - please join in

Hi zana

Firstly I can’t believe that yet another doctor/oncologist is giving out very specific life expectancy figures! Wow, another one with a crystal ball. However it seems most of these crystal balls are not that accurate otherwise I would have been dead 8 years ago. The very outdated figures that they have quoted (btw the same numbers that were being batted around 10 years ago at my secondary dx) are so inaccurate it’s not true. Obviously there will be cases where the cancer is so aggressive the treatments don’t halt its progress but I would say in most cases having bone mets does not mean you only have 3 years, at maximum, to live. This is not just about how long I have lived with bone mets but as a general observation of all the ladies on here over the past 10 or so years that I have been on this forum. Sorry, rant over.

The fact that one bone met has been picked up on a bone scan is because a bone scan will pick up any areas of activity that the nuclear dye is taken up by. This can also be an area of other bone disease such as osteoporosis but because you have a history of BC they would expect it to be related to that. My hospital told me they only use bone scans for diagnostic purposes and then use CT scans to watch for any changes as the bone scan is more accurate for the bone diagnosis. A bone biopsy will determine whether it actually is BC but they can be difficult and painful to perform which is why most of us have never had one. MRIs are also more accurate than PET or CT scans, which I think are quite similar in the way they work, and can only pick up lesions, ie areas of secondary activity, over a certain size. For instance my recent CT showed only one liver lesion but an MRI done just after showed up 2 other tiny ones which the CT just couldn’t pick up. I started off, 10 years ago, with one suspicious area on my spine and one ‘hot spot’ which the bone scan had shown, I also had a local recurrence so they knew that it was secondary BC and didn’t need to biopsy the bone for a diagnosis. I hope you get a definitive answer from your oncology team soon, one way or the other, as the hanging around and waiting to know is one of the worse parts. Good luck and let us know how you get on.

Nicky x

Member

Re: Bone mets - please join in

Hi Zana I am no expert and this has not happened to me but my understanding is that PET scans show more than bone scans and MRIs. They are more sensitive. My bone scan showed one small area on the spine but the PET scan showed two more tiny ones which did not show on the bone scan. I’m also very surprised that the doctor said two to three years with one bone met. Seems quite specific and rather pessimistic? There are a lot of treatment options. Do you have a breast cancer nurse? You could phone him/her. When is your next appointment- you need clarification. Sound like good news to me. Best wishes Anne
Member

Re: Bone mets - please join in

Hi the last i was on i was waiting on a pet scan, ive now had the scan and the results, the good news is the cancer hasnt spread to anywhere else in my body, but im confused as i have 1 bone met in my spine that showed on the bone and mri scan, which led to my doctor telling me i have 2 to 3 years to live, but the bone met didnt show on the pet scan, so now im waiting to get a biopsy on my spine, would like to know if this has happened to anyone else? I thought the pet scan would show any cancer but seems not? Would love to know if anyone has had this experience, thank you x
Member

Re: Bone mets - please join in

....

Member

Re: Bone mets - please join in

Hi carolsav,

 

I'm very intrigued. You said your MRI scans were stable.....so what did 'they' do to finally find your mets.? I am interested.....take care....

Member

Re: Bone mets - please join in

Sammycat I had to reply to the message. I too started with pins and needles in my left leg and was told the same as you.......but now I have very little mobility in that leg and have been told cancer now in lower back nerve endings. I don't want to scare you but I wish I had been more proactive when it all started instead of putting up with it.  I knew something was wrong but kept quiet.  My capcitabane is no longer working so have been put back on tamixifen but if that doesn't work it's intravenous chemo again paxitaxol I think but I might have the namewrong.  I was even told my MRI results were stable but because I knew something was wrong they looked again. 

As I say I just wanted you to be aware. 

Member

Re: Bone mets - please join in

..

 

Community Champion

Re: Bone mets - please join in

Silver, does gabapentin work?  Have never tried it...but will if it works, someone mentioned she found  an antispasmodic helpful,can’t recall which..you could ask.

 

i am in constant pain, but my back and gut mostly at present.

 

M

Community Champion

Re: Bone mets - please join in

I get sciatica, which feels just like that

 

 

my chiro told me to sleep with pillow between knees at night and I try and avoid hard chairs as they always. Set it off, for me as do bucket car seats

 

best wishes Moijan

Member

Re: Bone mets - please join in

Hi everybody,

Lots of people with secondary breast cancer have been diagnosed originally many years ago.  In my case I was diagnosed in 1995 and discharged in 2000.  I had never had any problems since my original diagnosis, but my secondary cancer revealed itself in my peritoneum in 2015 and was then revealed in my bones.  I don't have bone pain (apart from arthritis in knees and hands) so all this was a big shock.  I knew that breast cancer could recur after more than five years, but I didn't realise it could happen after 20 years!  

I think that a lot of doctors and others in the caring professions don't know that cancer can recur after so long and that is why they dismiss any fears.  You would think that their training should stress that it can recur after a long time bearing in mind all the evidence of this - especially on this forum.

I hope you are all coping with your various symptoms and treatments.

Windflower

Member

Re: Bone mets - please join in

My oncologist told me it was inevitable that I would get cancer again for the type of hormonal breast cancer I had originally. That it could take 10-20 years to materialise, but come it would. In my case it was 10 years later with one GP insisting I hadn't got cancer again. The frustrating part it trying to get past a GP onto more specialised investigation. I'd had three x-rays over 6 months before a locum GP finally put me forward for an MRI scan to reveal the bad news.

 

Ironically I didn't take Tamoxifen after breast cancer as I heard a side effect was joint pain. I know all about joint pain now!!

Member

Re: Bone mets - please join in

Hi Angelsam,

it does sound like you have sciatica....however (and I don’t want you to over think this but just bear in mind).

my BC was in 1999. During the summer of 2014 I was having lower back pain and leg/ hip pain. I saw several doctors at my local practice was told to take painkillers and do various exercises, I queried if it could be related to my previous BC and he laughed and said “ highly unlikely after all this time”. I was referred for physio and the guy doing the physio  pressed deep and hard along my spine. The next day I was in agony. I went back to GP and demanded a bone scan. Dec 2014 diagnosedwith multiple bone mets. 

The moral of the story is don’t take no for an answer and demand a bone scan.

Having said that yours does sound like textbook sciatica but for peace of mind I would get a bone scan. GP’s aren’t specialists in any one area and with our history we need to demand our fears are taken seriously.

 

With love xxx

 

 

 

Member

Re: Bone mets - please join in

hello dear funny/f,

 

As I've said, I was stage 4 at initial Dx. Despite this, I get fobbed off incessantly. Oh, it must be your arthritis. This is my G.P. Or its a longstanding pain! I end up having to fight my corner when I'm feeling unwell. Its ever so hard at times. As i live solo, i attend clinics solo....and in a strange way, this makes it harder. Oh dearie me...I'm whinging...!!! 

 

How are u, this w/end? Big friendly waves to u, across the pond....hoping i remembered right.....xx

Community Champion

Re: Bone mets - please join in

Angelsam, Never let a doctor fob you off! I'm not talking about the symptoms you are having now, but any time you are concerned. They should never laugh at you! I don't want to scare you but want to make you aware that it can come back no matter how many years. It is less likely the longer it has been, but it can happen. Always get things checked out! Mine came back at 10 years. I was quite naive and shocked! FF

Highlighted
Member

Re: Bone mets - please join in

Hi, I hadn't thought about it being sciatica, maybe it is that. Pain has been quite bad lately and driving me a bit nuts lol. I have an appointment with GP on Tuesday so will see what she says. I'll try not to let her fob me off but she did say when I was 5 years clear that I was cured now 😣 and seeing as it's been over 10 years she will probably laugh at me if I mention the cancer. Thank's for replying Xx

Member

Re: Bone mets - please join in

I think the hardest thing to bear is daily pain.....& then u may find its of unknown origin/ your arthritis......i don't think we should be in bad pain, in this day and age...xx

Member

Re: Bone mets - please join in

Hi AngelSam

I to have this pain and have had it since last October! I am now on amitriptyline 20mgs every night. I think it is beginning to work. My left leg tingles when I stand up with pins and needles. I am told by my Oncologisr that is is nothing to do with my bone mets but seems a bit of a coincidence. I agree that it is awful we have to have constant pain and being offered opiates which seem to destroy your mind don't help. I don't know about you but I have a real problem with sitting or lying down so I stand up and walk a lot to relieve it. I was first diagnosed in 2011 and found I had secondaries last September. So good to talk to other ladies in the same position as it can be very lonely!

Member

Re: Bone mets - please join in

hi riverside dawn,

 

When did you have your initial surgery? If you are concerned, I'd be calling your breast care nurses.

Take care...hoping u get your answers soon,

silver x

Community Champion

Re: Bone mets - please join in

I had reflexology on Monday, she said the areas I found painful were connected to my lungs, right breast and lymph nodes (had left mx 4 years ago).... should I be worried???
Community Champion

Re: Bone mets - please join in

Silver, I'm sorry you are in pain and no response from your oncologist! I would be done with him/her! Surely there must be someone else to see.?!?!

 

Hugs , FF