Bone mets - please join in

[Zana]

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

[Zana]

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

[Zana]

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

[nicky08]

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

[angelSam]

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

[silverlining]

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[Kate21]

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

[silverlining]

.....

[Moijan]

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

[Moijan]

Thank you silversx

[Mermaid007]

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

[nicky08]

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

[Anne30]

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

[Zana]

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

[silverlining]

....

[silverlining]

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....

[carolsav]

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. 

[silverlining]

..

[Moijan]

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

[Moijan]

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

[windflower]

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

[lululu650]

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!!

[Mermaid007]

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

[silverlining]

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

[funnyface]

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

[angelSam]

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

[silverlining]

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

[sammycat01]

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!

[silverlining]

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

[riversidedawn]

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???

[funnyface]

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

[silverlining]

Hello bon,and all the others,

You've hit the nail on its very head. I'm a multifactorial patient as I'm sure many are.....If you have been in pain in excess of 8 weeks, surely u should report in.

I have reported into oncology last Wed...& absolutely zilch response. Meanwhile I'm on Morphine sulphate, panadol ( hospice's nurses odea), and I'm adding Gabapentin at increasing levels just trying to rid myself of this pain. In this day and age, i feel 'we' should not hhave to suffer daily bad pain without help & support.

Are u an olde hand at this forum stuff?

Take care.....

silver xx

[bonariensis]

Hi AngelSam

You are very welcome to post here. Sounds like you've got sciatica which happens when something affects your sciatic nerve, Good that you are going to see your GP. Emphasise that you've had it for 2 months and don't be fobbed off. There have been stories on here of women whose symptoms were not taken seriously but it may well be nothing to do with cancer.

Good luck

Bon xx

[angelSam]

Hi I hope you lovely ladies don't mind me asking a question. I've had this pain in the back of my leg for a couple of months. It starts under my bum cheek and goes down to about knee level. It hurts when resting and tingles a bit. I will make an appointment with my GP but was wodering if anyone else had this. I was diagnosed in 2007 . Thank's Xx

[zena75]

To add; I was achy, and very weak, chemo just destroys doesn’t it and it’s just the hope that is does what it’s meant to do whilst the rest of our mind and bodies tries to withhold the tortures !
Massive hug to you M darling lady xx
And massive big up to all you ladies on here fighting this most cruel lottery draw xx

[zena75]

M
I was only on pac no carbo unless that’s what pac is ?
Still rubbish at the whole cancer language..
I was ok on pac it was Fec that nearly killed me .
I actually felt ok on PAC it was weekly though and if I remember correctly you are 3 weekly hun .
Sorry you having SEs they suck.
I popped on and saw your name and had to write , Not great at writing on my phone though so il pm you when on laptop xx

[Moijan]

Yes, I’m fuming about that last point..,loads of love....Mx

[Moijan]

Hi there Zena..how lovely to hear from youxxx

’of course you are very welcome here...this the happy chat thread.

i am now on carbo, have lost my muscle strength, ache both arms, and neck...stomach aches, eye sensitivity,

Did you get all or some of those.?

i think they are treating me as triple neg...but am hoping this works.

I recall how ill you were on Paclitaxel......l hope you are better?

please keep in touch and pm me if you like...I’d love a chatxx]

much love and hugs, Moijanxxxx

[zena75]

Ps I had 8 lymph’s removed and 2Xwle to get Marcin’s . Showed it was in 3 lymph’s but chemo killed it all ..
Also I can’t spell ..
Also fuming that if we’ve had chemo they won’t give us stuff !!! Tell that to my 6 year old who wants her mummy .. x
I’m so scared of another cancer diagnosis and that il totally melt down ! ..

[zena75]

Hi all
Not posted in ages ( hi M xx)
I’ve bern having pain in my hip when resting now for over 6 weeks ..
I had bc her + diagnosis in dec 16
Also in lypmhs
Had some Fec which nearly killed me
Then 12 pac
Then 3 wks rads
And 18 herceptin through that all .
When on tamox ( vile for me )
Then had ovaries out as a precaution!
Then on anastrozole but I sweated soooooo much it was unbearable.. so I’ve been put exemestane which is less sweaty .. but just read nicky08 stuff about it and nhs not letting other drugs be used if you’ve had it before .. what shall I do ? Go back to anastrozole as I may need Exemestane in future?
I’m freaking out about bone scan .. sorry I prob should not be on this thread .. but then I’ve never been one to follow rules on here , for me it’s aboyt respecting each other and being about to say what we need too when we need to ... we get enough judgements from those non- cancer muggles xxx

[Moijan]

Stillhere have pmd you

[Moijan]

I agree with you Siver, most have abssoluetly no idea unless c has touched them.ihave heard the buses. Comment over. Again for 18 years now...what I have said back, was,, well at least you haven’t been given the heads up that there is a ? About the rest of your life, that is the hard stuff...we tend to live our lives as we wish, until c comes in, then that innocence is gone.

my very best friend, when she heard from me that the options for my treatment.  seem less now as I’ve had many...she said, oh, firsts x died and then y...now everybody is going! I love her dearly, but was annoyed...said loudly, well..you seem to be doing ok. And she realised and reverted to the bus comment.she was sad that friends are leaving her..,I quite understood..

hopefully you havent lympoedema as people in small droves used to. Sidle up to me and say what have you done to your arm? Quite rude, you could see them coming over in shops or on trains and. ask, or do you mind if I ask you a q? I said once no questions today sorry..and got..well I was only going to ask you...,,,,

in in the end I said..shark bite!  People ARE rude,

‘’hugs Moijan

[silverlining]

I think its ever so sad that people don't treat us with tact and sensitivity but then again their flippancy might belie a genuine feeling of really not knowing what to say as Ca is rather a taboo subject.....i wish it was not so as their comments do actually hurt.....xx

[bonariensis]

Dear Stillhere

I wish you could feel well again.

It's true people all die eventually and in all sorts of ways but this way is  particularly hard work (and I've barely begun)

People you encounter usually don't understand what's involved and there are only a few people that you can or want to explain it to.

love to all Bon xx

[lululu650]

Just to add to the thoughtless comments;

Telling my new hospital physiotherapist that although my cancer was terminal I didn't want to give up on trying to be less pain free. Her reply was "oh well, life is terminal isn't it?" 

I suppose there's no training for dealing with difficult conversations but I would have thought health professionals would be a little more careful with their choice of phrase!.

[Stillhere]

Thank you, Silver, I'm just feeling down because my SEs are hammering me, I've been very lucky to be on a successful drug trial for 2.5 years but in the last 2 cycles my body has had enough and seems not to want to continue.

One drug is Ibrance but the other is an experimental one, Taselisib which I read has not shown much of a result on another trial, but too many SEs and I think Roche may be discontinuing it?

Anyway, mustn't grumble...would just love to feel well again, like all of us xx

[silverlining]

Hi stillhere,

I'm sorry u are being plagued by unpleasant side-effects. Are u in the midst of chemo.? Is there anything u can use to help u?

Yes, indeedy, peeps can be ever so thoughtless.....& they really do not think b4 they speak. Its hard when we so very often feel below par owing to various t'ments.

The whole shebang makes us emotionally vulnerable, too....xx

[Stillhere]

Yes, that's my pet hate comment...."oh I could get run over by a bus tomorrow!" Seriously? Is that supposed to make me feel better? I'd take my chances with a bus over cancer any day... Only bettered by the classic " you must beeee positive, your attitude will help you win the fight!" Yawn, I can't even be bothered to explain secondary breast cancer...

..don't know why I'm feeling fed up, side effects have really kicked in with a vengeance, sorry! Hope everyone is enjoying the cooler weather xx

[silverlining]

hi sarah....

this is a shocker.....last X'mas my ex said...oh well, he could get run over by a bus....all i could say was...how dare u compare cancer to a bus!!! x