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Bone mets - please join in

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Re: Bone mets - please join in

Hi Nicky,

apologies for hijacking your comment, I guess Im just after some positive news/inspiration and reading this comment suggests you had liver mets since 2013? I’ve just found out it’s spread to liver as well as bones and the stats don’t make good reading so this is reassuring. What treatment have you had if you don’t mind me asking? 

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Re: Bone mets - please join in

Hi Nicky,

 

Thank you for sharing your experience. I know every person's experience is different and one shouldn't compare, but I cannot tell you how comforting it is to talk to other people! It's so inspiring!

 

She does have a 1cm lesion on her liver, but it is quite small and it is only the one and they didn't seem too concerned about that. We are lucky, because we live so close to The Christie which is an outstanding hospital for cancer care.

 

My mums cancer is lobular and estrogen positive. We will find out more this afternoon.

 

Thank you for your response!! 🙂 I hope you are keeping good and well.

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Re: Bone mets - please join in

Hi Secondarysister

I agree with Stoney, a lot, if not the majority of us (on this form) don’t seem to have issues with their bone mets. Obviously some forum users do have situations where a bone collapses or breaks spontaneously but this does tend to be pre-diagnosis as once a diagnosis is made a treatment is given that stops the bones getting into this situation. I am not saying that some of us don’t experience pain but the majority seem to cope well. This is my experience of being a member of the forum for over 12 years - and I have read many hundreds of posts in that time. 
I would hope that once your Mum gets a treatment plan in place her bone mets won’t get any worse fir sometime at least. And that she is pain free. Since 2008 when my bone mets were 1st diagnosed I have been pain free, despite considerable spread 5 years on from that which was mainly due to insufficient monitoring allowing them to spread so much before the hormonal treatment I was on was changed. Since 2013, when liver mets were also found, my bone mets have remained stable despite the liver mets changing.
Good luck for your Mum today. I’m sure once her treatment is decided upon you will be back here to ask any questions, someone is bound to be on the same treatment.

Nicky x

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Re: Bone mets - please join in

Hi secondary sister sorry to hear about your mum.. and best of luck for this afternoon.. I was diagnosed with primary breast cancer 2003, and roll onto 2019, where by accident I found out I was stage 4 metastatic in my bones.   I had no issues prior to this with my bones, and they believe I have had this for quite some time, gone un detected and unnoticed. Now unfortunately I am stage 4, but to be honest I still have no problems with my bones, just the odd ache.. I'm trying to be positive, but it's very difficult. I'm on monthly hormone injections, bone injection and chemotherapy drug. 

Best of luck for this afternoon.  

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Re: Bone mets - please join in

My mum has her first appointment this afternoon with the breast cancer oncologists. I'm just so anxious! Instead of working, I have been reading the Bones mets thread for hours !!!!

 

There are so many positive stories out there which completely lift my spirits, but I am worried that my mum's bone mets are in quite a lot of her bones. I guess i'm a bit in denial to even ask this question, but does it make a difference? If it is in the bones, does it matter if it is one bone or five? Presumably when they start her on treatment it will target and zap / treat them all ? If it is in the bone, its in the bones.. I suppose the most important aspect is how well she responds to treatment ...

 

I'm still in a state of shock at how it could have gone undetected for so long for it to be so extensive in her bones. Any comforting words in this moment will be gratefully recieved!

 

 

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Re: Bone mets - please join in

Hi Gillyflower,

 

Thank you for your response. 🙂

We was introduced to the oils by my stepbrother. His nana got lung cancer at the age of 82. Heavy smoker all her life. She refused Chemo and radio at that point in her life. So my stepbrother suggested she tried the oils, so she agreed. Within 12 months the cancer reduced by 70%. The oncologists at the Marsden Hospital have reached out to the man who provides the oils for him to do a seminar.

My own brother’s best friend has an inoperable brain tumour and was given 2yrs to live. He takes the oils everyday and 6yrs later his tumour has reduced slightly and is still relatively fit and healthy. 

So these are stories from people I know and trust. Not stories from the internet. I know every cancer is different and it may not work for my mum, but we will give anything a shot! 

It is great to hear peoples opinions though, good and bad!

My mums breast cancer is lobular which is supposedly “slow growing” and only 10% of breast cancer cases. Anyones experience with this type of cancer would also be gratefully appreciated!! 

Many thanks 🙏🏻 😊 

 

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Re: Bone mets - please join in

You’re welcome. If any of those things were magic cures our oncologists would be the first to be recommending them. In the meantime given the diagnosis that we are all living with and having to deal with being on permanent treatment I think a good balanced diet along with the old adage of ‘a little bit of what you fancy’ is the right way to go. I think life is for living and for me that doesn’t involve surviving on kale smoothies 😉

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Re: Bone mets - please join in

Thanks so much for posting the link.    A very interesting read.   I have lost count of the number of people who have told me that sugar feeds cancer or I should drink green tea all the time. All the best

Jane

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Re: Bone mets - please join in

Hi Secondary Sister,

That’s a very comprehensive reply from Gillyflower on CBD so I won’t add anything to that. You also mention putting your mum on an alkaline diet. It might be worth reading this blog from cancer research which discusses the evidence for following different types of diets amongst other things for cancer (link below). There is also quite an interesting documentary available on the BBC iplayer called ‘False hope? Alternative cancer cures’. I would really recommend doing your research and discussing things with your mum’s team before making any final decisions. Most people I know who are living well with SBC tend to take the approach of trying to live life reasonably healthy but at the same time enjoying treats and things that you enjoy (ie. not ruling out any particular food groups). X

https://scienceblog.cancerresearchuk.org/2014/03/24/dont-believe-the-hype-10-persistent-cancer-myths...

 

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Re: Bone mets - please join in

Hi SecondarySister,

I am so sorry to hear about your mum's diagnosis, what a really traumatic shock.  Breast cancer is so sneaky its unbelievable how long it can go undetected.

Its great to hear that you've found the forum a source of support and she is lucky to have you supporting her and also sounding very positive! 😊  If you have any problems working out how to use the form please just ask.

I wanted to reply to your comment on the CBD (Cannibinoids) as this is something I've heavily researched and spoken to a number of my medical team about.  I'm really passionate about educating others about it because its very complicated topic and a lot of information about it can be confusing and at worst, totally untrue.

I'm not sure how much you know about CBD oil vs cannabis oil so I'll quickly summarise the main differences:

1)  CBD oil should be derived from industrial hemp and contain less than 0.2% THC for it to be legal in the UK.  Any CBD oil or cannabis oil being sold with any THC content higher than this is currently illegal. Here's a brief news article which clarifies things quite well and if you want more information you can look it up on the Home Office website (though its quite a lot of heavy reading!).  https://www.bbc.co.uk/news/health-44534861

2)  Medical Cannabis is the drug that has higher contents of THC which some doctors have permission to prescribe (however its a very tricky area and its been reported that doctors are not usually willing to prescribe it).  The NHS website provides a good summary of this:  https://www.nhs.uk/conditions/medical-cannabis/

So that's the main difference between the two types, its easy to get confused between the two if you are new to learning about this!  Olivia Newton John is reportedly using the "illegal" (in the UK) cannabis oil, presumably wherever in the world she is living she is able to buy or grow her supply legally.

It sounds like you've already done some reading up on CBD, which is great.  I've also spent a lot of time researching this (actually reading any academic research papers that related to any clinical trials done using CBD).  It was heavy going but this is what I learned (I've copied and pasted this section from a post I made elsewhere):

I did come across a couple of articles that report clinical trials were done that prove CBD oil provided significant benefits to bone healing, particularly osteoporosis.  There was also one article which claims that a clinical trial proved that CBD oil had potential to cause remission or significantly stabilise different cancers, breast included.  However, I was a bit skeptical about that one as the clinical trial was undertaken using a synthesised, man-made version of CBD oil, plus the trial was run by people with backgrounds in alternative health....so of course they would have a motive to create a trial that could favourably show results for CBD working.

A lot of what you will hear / read about CBD oil is purely anecdotal or businesses/health food shops or sites trying to sell you expensive products.  Sadly, the internet is full of these, notably so with large numbers of people claiming cannabis oil cured their disease; when in actual fact, the person had either received prior treatment / surgery, or there were aspects to their disease which meant it was cureable, or they had access to new drugs or treatments which they don't openly declare in their "story". I do keep an open mind about it all, regardless, but I always take every anecdotal story with a pinch of salt.

I would recommend that if you're thinking about trying CBD, you should do research first, and look for scientific / clincally based evidence.  If you decide to go ahead and try it, then make sure you buy it from a reputable supplier (to ensure you're not getting fake oil or anything that could potentially be harmful).  Any supplier of CBD products should openly provide copies of their lab reports to verify that it is definitely CBD oil that you are getting (and not chip-pan oil, for example!).

I've scoured the internet for scientific research papers, clinical trials etc.  There isn't a whole lot out there just yet, however it does seem to be that science is taking CBD seriously and there are trials under way for lots of different things...but nobody has any actual answers yet.

 

So my take away from everything I researched is that CBD oil doesn't cure cancer and there is no scientific or clinical evidence to suggest that it does (just in case you weren't already aware).  However, it has some reported clinical evidence for being helpful for pain relief, inflammation and anxiety.  I have recently found some clinical research which suggests it really benefits bone healing (ie. osteoporosis).

I found this article helpful to read as it explains a bit about what you should look for in a good quality CBD oil and offers a few suggestions:  https://www.standard.co.uk/shopping/esbest/health-fitness/best-cbd-oil-in-the-uk-a4177676.html

It also recommends that what you're looking for is full spectrum CBD oil (which contains terpenes, flavonoids and CBDa) that is going to give the "entourage effect".  Its too lengthy for me to go into detail but if you Google it, you'll easily find some explanations.

Apologies for the lengthy post, I hope that helps in some way and I really hope your mum's treatment all goes well.  Please don't hesitate to ask any other questions!

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Re: Bone mets - please join in

Hi Stoney,

 

I've had to 'reply' to someone's comment in order to write a comment/join in it seems.

My mum has been recently diagnosed with secondary (lobular) breast cancer in her femur, pelvis, spine, rib and one lesion in her skull. Her primary diagnosis was in 2010. Up until two months back she was climbing mountains in the lakes! My mum is only 56yrs. Recently had symptoms of sciatica. That's it. It has come as a great shock, but this forum has been full of inspirational people! It has supported me in the worst 3 weeks of my life!

 

I really hope my mums journey may help inform and guide others in the future!!

 

We have started my mum on Cannabis oil CBG,CBD and THC followed by an alkaline diet. I will let you know how this goes. At minimum, it will help with nausea, appetite, anxiety, pain and help her sleep. At best, I've heard it can significantly reduce the cancer.

 

My mum will start radiotherapy this week and we will get a full plan in place next week with the breast cancer onology doctor with regards to other treatment options.

 

Has anyone else had experience with Cannabinoids ? I know Olivia Newton John uses it for her secondary breast cancer. It is also widely used in Isreal and being researched in the University of Madrid. If anyone would like to share their experiences it would be greatly appriecated!

 

I'm taking all the positives I can out of this awful situation, but I have also read that lobular breast cancer is relatively rare compared to ductal. If anyone has any experience with lobular breast cancer, please share!! I will be forever grateful.

 

 

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Re: Bone mets - please join in

This forum is very quiet, where has everyone gone?

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Community Champion

Re: Bone mets - please join in

Hi Gloria

Try private messaging Funnyface as she does still use the site from time to time.

Sue xx 

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Re: Bone mets - please join in

Thanks Niky for your prompt answer. I’ve noticed myself that this forum is not as interesting now as has been in the past.

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Re: Bone mets - please join in

Thanks a lot for your promptly response

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Re: Bone mets - please join in

Hi Gloria

Annoyingly I’ve just typed a reply and it didn’t save or let me copy it so here goes with my 2nd attempt.

The title of Community Champion is given to forum members who have been active, and pro active, over several months or years. As such I didn’t have a say in becoming one and have no extra insight to other forum members profiles etc that anyone else would have.

Having said that I have also realised that funnyface hasn’t posted for some time now and was wondering about her. Sometimes individuals or groups of  forum users choose to communicate on other forums, mainly when this forum has had another re-incarnation which makes it less user friendly. Maybe she has moved to another forum or uses one in the USA where she is based?
Sorry can’t be if more help.
Nickyx

 

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Re: Bone mets - please join in

Dear Nicky08, I’m new to the forum and don’t know well it’s in and outs. I’d like a simple information from you as a community champion. An American lady under the name of Funnyface is still a member of this forum? If yes why I haven’t seen any post from her recently? 
Thank you.

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Re: Bone mets - please join in

Dear Nicky, Do you know if the user under the name of funnyface is still a member of the forum? If yes why I can’t see any posts from her? 

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Re: Bone mets - please join in

Thank you catokitty, will definitely follow up on some counseling /therapy...

Children just think mammie's leg is sore from operation, but perhaps we need to take a different approach without obviously telling too much...

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Re: Bone mets - please join in

Hi, I am sorry you find yourself here but believe me the shock and despair I felt on my diagnosis in May 2019 did calm down and now I get on with life pretty well normally apart from monthly trips to the hospital.  As Gillyflower suggests, hospices are a great source of support and comfort and it doesn't mean you are anywhere near the end. I go to a regular wellbeing meeting run by the local hospice (by Zoom at the moment) where people can share their feelings with other people who are in the same situation.   They can also provide support for carers and children. Your oncology team or GP can refer you.     Counselling can really help with strategies for coping with feelings of despair.  There is plenty of help out there and I do hope you find some support.  All the best

Jane xx

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Re: Bone mets - please join in

Thank you gillyflower, appreciate your reply . I just can't seem to shake this feeling of 'death' and when I look at my daughter who is 7, I think how much of her life I will miss out on . . Can't get my head around the idea of 'making memories' every day is so hard ..  

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Re: Bone mets - please join in

Hi Stoney,

Welcome to the forum, I'm sorry that you find yourself in this club but rest assured, you'll get lots of support here.  Sending you a massive hug!

Its a traumatic and difficult experience when you first get told about your Stage 4 diagnosis.  Its also totally natural that your mind runs wild with thoughts of "how long have I got" and "what if", especially when you have your young children to think of as well.  I didn't think I was going to see the end of the year when I was first diagnosed with my secondaries but now I think "Well I had better keep working and doing stuff as I will be alive for a rather long time yet!".

It is important that you think about getting help and support to deal with the psychological side of things, as I've learned this can have a massive impact on your overall health and how you manage day to day.  If your GP has suggested you see a Psychiatrist, think about whether or not you want to give it a go.  It could be worth trying it and if it doesn't work for you, there are other options such as Counselling, getting a referral to a Palliative Care Nurse (who are usually pretty amazing), finding a support group or linking in with a local hospice to see if they have any services that you might find helpful (depending on the Covid situation of course!).  I was lucky to get some Counselling through my local hospice, who were wonderful.

There are also other things you can try like doing regular meditation, trying some hypnotherapy or listening to audio books (anything to keep the mind busy basically!).

If you browse this forum, you'll see lots of stories people have shared as they go on their journey and how actually, there is much more hope and positivity for Stage 4 breast cancer nowadays.  The Oncologists can't really give you an indication of how long you'll live for because each person and their cancer is so unique.  Not to mention that sometimes they do get their educated guesses wrong!  Statistics for survival are also old and outdated as data has not yet been gathered and compiled for long-term survival with all the new treatments that have appeared in the last few years.  In fact, there have been some discussions on the forum recently as to why the medical profession don't do research about long term survivors, as there are people who have lived with this condition for 20 years or more!

If your recent scan results came back as everything being stable, then that is fantastic news and its about taking one step and one day at a time from here.  New treatments and new research are being conducted all the time so do your best to look for the positive stories to balance out all the negative ones and most of all, be kind to yourself and don't hesitate to ask questions or for support when you need it 😊 xx

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Re: Bone mets - please join in

Hi everyone, new to forum, i had breast cancer 2003, and accidentally found out last aug (2019) I had stage 4 in bones, pelvis, small bit on vertrabe/spine.  .had hip replacement, radiotherapy and am now on hormone therapy/chemo tablet and Bone strengtheners . .  

I have 2 young children and it's heartbreaking to think I won't be here for them... Had scan a month ago and was told it's stable.  

I was told 5-8/10 yrs... (and yes, I can't even be happy with that 😥)

I'm struggling at the moment...my GP has suggested I see a psychiatrist....not sure what that will achieve....

Thanks

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Re: Bone mets - please join in

Hi. Thanks for this. I ended up at this thread due to concerns that I might have secondaries (IDC right breast 2 years ago, mastectomy). Now displaying symptoms of bone mets. I realise now this is the wrong thread to be in - but before I leave it I would like to thank all you wonderful people dealing with secondaries- I don't know yet if I have bone mets but all your help and advice  in this thread have been helping me along this part of my 'journey' (Don't like that phrase  really but only way to describe what I'm going through at the moment). This thread has shown how you're all totally inspiring and have helped me realise even if I do have bone mets I will be able to summon up the courage and strength to deal with it. 💕💕💕

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Re: Bone mets - please join in

Hi pawsome.

No problem, it was just my view that’s all, my apologies if you, and other SBC forum users, have found the use of the Bone Mets thread insensitive. I have been on this forum, in all its various formats, for probably the longest of all secondary people, to know this has been an issue before. I also think, having read the posts after yours, that there should be a more structured place on the forum to ask questions such as these. I do feel that any primary person who ventures over to the secondary side of the forum is welcome to ask any question - when I ‘only’ had primary BC I was way too scared to venture into any area on the internet that dealt with secondaries! It would be good to let them know there’s a specific area that can be used. I have always felt, and keep pointing it out, that the Treatments and Medical Issues title of one of the secondary sections does not specify that it’s for secondaries (if you do a search) which is why primary ladies quite often post there by accident. As Janey has said, the ‘Bone Mets please join in’ thread appears when searching for specific words , all very un-user friendly, so we shouldn’t, as secondary BC people ignore the questions or dismiss the worries of primary BC people. If a section was created it would help point people in the right direction and we could help/advise if we wanted. By the way if there is a section already I don’t use it as I’m unaware of it, having already said that unless it’s in the secondary section I tend not to look at any other sections as a rule. Therefore it could be missed by lots of us who might be willing to help/advise. 
Nicky

ps I keep using ‘people’ not ‘ladies’ because recently there was a man with secondary BC who posted to point out that they exist as well! Something I was of course aware of but as we had no other male users at that point I had been using ‘ladies’ in my posts.

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Re: Bone mets - please join in

That’s a really good idea Jill thank you xx

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Re: Bone mets - please join in

I'm going to ask moderators if there is any way to add a worried about secondary breast cancer section in the living with breast cancer section - that would be more likely to get people posting and we could signpost people there -otherwise I think people will still be drawn to this section when they have worries.

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Re: Bone mets - please join in

Perfect idea! Thank you Janey xx

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Re: Bone mets - please join in

I’ve just started a new thread in the coping with anxiety section. Hopefully anyone searching may find it? X

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Re: Bone mets - please join in

Maybe the forum needs a specific board for primary ladies who are worried about symptoms and you’re worried that it has come back? I think that might be a solution? Totally get that it is hard to know where to post. Best of luck to you x

 

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Re: Bone mets - please join in

Hi. It is all confusing. I suspect I may have secondaries in my bones and have been following this thread to get an idea of what is happening with others and what symptoms they have - trying to compare what is going on with me, as I'm paranoid that every ache and pain are signs that my cancer has spread - so im not waiting for test results or anything at the moment or appointments and, like you, I did a search and ended up at this thread as well. 😘

 

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Re: Bone mets - please join in

And Janey - my last reply wasn’t aimed at you. We cross posted in cyber space. Please don’t feel bad about it xx

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Re: Bone mets - please join in

The moderator has added a sticky post to suggest suitable alternative places - waiting for tests and results or ask a nurse were two places but you can have a read of the post to check. 

It’s just having secondary breast cancer is very different to having primary - we have different treatment, issues and concerns. A lot of us feel sidelined and marginalised from conversations about cancer as it is - which mostly tend to focus on primary cancer and recovery. People often find it difficult to engage with us as the fact is we are incurable and that’s not a comfortable conversation for many people to have.  So we really value having safe spaces to discuss issues and share concerns. 

The fact is we are basically the worst nightmare scenario for many primary ladies - I know as I was once one myself. I remember getting my diagnosis age 26 and thinking that was it I’d put it all behind me and I could forget about it and move on. Sadly that wasn’t to be. But we are where we are hey?!

I really hope that everyone using this forum is able to get the support that they need. But just to make sure they ask for it in the right places.  Xx

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Re: Bone mets - please join in

Last post I promise! However, it maybe helpful to know that when you tap in the search bar ‘Possible bone mets’ or words to that effect, this thread appears, without any clarification (well not that my lousy eyes can see on my phone!). Absolutely get what you’re saying Pawsome and can understand the distress this may cause. Hopefully it can be resolved by the site to make sure it’s clear and further distress avoided. X

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Re: Bone mets - please join in

I can understand your feelings Pawsome - it would definitely be a kick in the gut to have people reporting their relief at not having secondaries in this section - a bit like my friend who kindly rang me to tell me her mammogram was clear when I was going through treatment( but on a much lesser scale ! ) .Im just not sure where people who have these worries currently fit in the forum layout though and when people are anxious they just post anywhere to get it out there .Maybe as Community Champions we can remind people about this - but there needs to be somewhere to signpost people to .Also apart from Nicky there are very few secondary Community Champions so not much presence here to monitor .x

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Re: Bone mets - please join in

It’s no problem Janey please don’t feel bad.

 

But I’m afraid I’m going to disagree with you Nicky. I use this area of the forum to interact with other ladies who have a secondary BC diagnosis to get advice and support from other secondary ladies. Whilst I’m pleased when primary ladies who are worried about symptoms have tests that come back all clear I also find that quite insensitive to us stage 4 ladies. As the forum moderator has said there are specific areas of the forum where primary ladies are able to post and ask questions if they are worried about symptoms of their cancer coming back. That then gives the option for us secondary ladies to comment on it if we wish but as it’s not in our area we don’t have to see it if we don’t want to. I am not alone in this and have spoken to other secondary ladies offline who have felt very upset and angry about this area of our forum being used like this.

 

wishing everyone the best xx

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Re: Bone mets - please join in

Thanks Nicky. I think I’d forgotten how to navigate this forum! Could do with a section on worried about secondaries maybe. I bounce around different forums, as I’ve had 2 primaries and on a watch for a third - all different! X

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Re: Bone mets - please join in

Gosh ,I would hope that people are ok with anyone needing support posting  anywhere ? Hardly what you think of when your are anxious - " where's the right place to post.We try as Community Champions to point people to the most appropriate place to post but sometimes it's not obvious where it fits .Where are these new threads I can't see them ? 

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Re: Bone mets - please join in

Hi Janey

Just to say I don’t think there’s any need to apologise as I don’t see that it’s a problem as you are discussing your anxieties with other forum members, it’s hardly ‘off topic’ It’s not obvious, other than the 2 threads that have now been created (which I think aren’t at all obvious threads to use) where you would ask another secondary BC person about your scans and what to expect and how to deal with the wait for results.
It’s a shame that the forum is divided (on the front page/screen)  into sections with the secondary BC people only getting one section that appears to be the one to use to ask secondary BC specific questions .  I only ever come to the SBC section, and rarely use any other sections as they are all distinctly populated mainly by primary BC forum members with the occasional SBC forum member. I do occasionally see a post that I respond to with advice but generally keep to this the SBC part which is a much smaller part of the whole forum, and doesn’t have so many sections or heading to post under. Which is why we often post a question/anxiety/result in an existing thread.
Nicky

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Re: Bone mets - please join in

Apologies. I posted having seen others x

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Re: Bone mets - please join in

Hi all, just a gentle reminder that this thread (and this board) are meant for people who have been diagnosed with secondary breast cancer. If you'd like to discuss appointments, waiting for test results etc, you may wish to post in the Appointments and Waiting for Test Results thread or to ask one of our Nurses a question, we have the Ask Our Nurses board. 
 
We have added a thread about this in the main section of the Living with Secondary Breast Cancer area. 
 
Thank you
Forum Team, 
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Re: Bone mets - please join in

So - bone mets ladies.... How are we all doing? Just wondering if anyone had rads to their sternum area for pain control even after treatment has shown that the bone is healing? My pain is a lot better since starting treatment but I have a stubborn soft tissue tumour pushing right into my sternum that gives me a bit of pain. I’m on palbo, letrozole, zoladex and denosumab xx

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Re: Bone mets - please join in

Just back from seeing consultant. So lucky with the team here. No answers but reassured they’re on my case. More bloods taken and bone scan she hopes in the next 7 - 10 days. Back to clinic after and hope anything sinister can be ruled out. She mentioned it could just be an old injury I was unaware of, but won’t take chances. Have decided not to go back to work today, feeling a bit wobbly X

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Re: Bone mets - please join in

Ahh Kate I'm so glad to hear your great news, what a relief for you!  You are so welcome to the support xx

I know what you mean about sitting around at home with nothing to do all day, it really is the worst.  I am also my own worst enemy when left to my own devices with nothing to do and no overall purpose.  I joked to my parents the other day that retirement can't be easy!

Stillhere - I'm glad its some help and you are quite right, as professionals they can't get emotionally involved and it must be a difficult part of the job for them when its not good news.  I have noticed my Oncologists' face light up with a smile when I have told her I'm feeling well on whatever meds I'm on and its those subtle things that let you know they do really care even if they don't always show it xx

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Re: Bone mets - please join in

That’s fantastic news to read. Hopefully you can get to the bottom of your pain soon x

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Re: Bone mets - please join in

To all the ladies who have helped me over this last week or so I want to say a huge thank you for your support and words of wisdom.

I phoned my breast surgeons secretary this morning and she told me she would dig around to try and help me. She just phoned back to tell me both my MRI of my neck and my bone scan look within normal range so no further action is required and I dont need to be discussed at the MDT meeting.

I feel a massive sense of relief. Now I just need to see if my gp can help me find the cause of my problems and pains.

Lots of love to you all and I wish you the best xxx

 

Kate 

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Re: Bone mets - please join in

Gillyflower

Your reply was very reassuring and I agree with what you say completely so thank you for helping me try and snap out of it. I'm my own worst enemy.

This week my hubby of off work so hopefully he can help keep my mind busy. I've also still got the last bits of school uniform to buy for my girls ready for starting back at school so focusing on that will help. 

When I was originally diagnosed with breast cancer in 2013 my girls were 6, 2 and 5 months old so they kept me focused 24/7. Now they are 13, 9 and 7 and very independent little ladies so I find myself often sat alone and that doesnt help with the mind going into over drive. 

 

I'm very grateful for you all

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Re: Bone mets - please join in

Your post is reassuring Gillyflower, sometimes a little knowledge is a dangerous thing because every look passing between doctors or the way you receive a phonecall can be interpreted as bad news. It's more likely that the team is snowed under and focussing on many cases.

I had most of my treatment at a specialist cancer hospital. I think that MDTs were more common there simply due to the large number of professionals that were involved with your care. I also felt that I had got to know the Consultants very well after so much treatment but realise that they have to maintain a professional distance. It would be too easy to be emotionally involved. 

 

 

 

 

 

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Re: Bone mets - please join in

Hi Kate, don't apologise or call yourself crazy, what's crazy is what we have to deal with, not how you're feeling! xxx

I used to work in a hospital doing discharge liaison work and obviously since primary diagnosis I've learned a lot about how the medical professionals deal with things and some of their internal processes.  The healthcare staff are often so busy with such high caseloads, your case is one of many and whoever you happen to speak to in the moment won't be recalling all the history, facts or information of your case, which can lead to uncertain/changing responses from them and lead to your anxiety being ramped up to 120%.  

So the best bit of advice I can offer is:  don't even attempt to interpret "what it could mean" when they are vague on the phone, when they want different areas to scan to what you expect, when they say your case needs discussing at MDT etc.  Sometimes nurses or consultants will say that they'll get something done urgently for you - I've had experiences where this has simply been that in that moment, someone really wanted to help me get answers as quickly as possible to alleviate my anxiety...but they have no idea that when they use the word "urgent", we then interpret this as "BAD NEWS PANIC ALERT!!"

As far as I know, MDT's will discuss any cases for patients currently active (ie. new patient coming into the department, or where results have come back from routine or requested scans, or where decisions are needed to discern what is potentially going on with a person's disease, or review progress on a particular treatment plan).  Even people with stable disease can still get discussed at MDT, it really doesn't always mean that there is something to worry about.

In the meantime, I would really encourage you to find a way of relaxing so that you can de-escalate the anxiety to a more manageable level.  You're going through enough as it is so you need to be kind to yourself as much as possible!  Sending hugs and hope you get the answers you need very soon xxx

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Re: Bone mets - please join in

I'm quite sure my breast surgeon has switched off emotionally. My oncologist was amazing but she signed me off because I'm under the surgeon's care with a promise to be there if I needed her. I'd love to make contact but I dont think at this point theres anything she can do or say to help me out. 

I think I will ring my breast surgeons secretary tomorrow and hopefully she will give me a call and let me know what's going on.

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