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Bone mets - please join in

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Community Champion

Re: Bone mets - please join in

Nicky, I haven't been on for awhile and never seem to get to the bone Mets thread. I popped in to say Hi to you. I'm hanging in there. Just hit my 15 year mark for my Mets. Everything just keeps remains stable. A new nodule will pop up now and then and then the next scan they are gone. I did just have one pop up that was larger than the others have been. Most have been in the 2 to 4 mm range. This one was 12.  Having a Pet Scan in January. Have never had one. I hope you are doing well and enjoying life the best you can with COVID, being rampant! I'm enjoying being a Nana. Hugs, FF

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Re: Bone mets - please join in

Thanks for your comments - I was on letrozole for the primary DX without the fatigue 10 years ago, and I have been on the lowest dose of palbo. The effect is crippling and I'm at my wits end. 

Oh well, onwards and upwards....

grumpy

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Re: Bone mets - please join in

Hi grumpy,

 

My mum was recently diagnosed with bone mets, so I'm still learning a lot. I may have this completely wrong and I'm sure your oncologist will have already thought of this, but I read that Ribociclib is the kinder sister to Palbociclib. It has fewer side effects and I am under the impression it is a slightly newer drug to Palbociclib. I know my mum has been suffering from nausea for 30-40min of the evening on the Ribociclib, but a part from this she is tolerating it well so far.

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Re: Bone mets - please join in

Hi there, I'm in a similar position to you with regards to treatment (and homelife!!!), although am controlling pain with paracetamol only currently. To my knowledge (and others, please feel free to correct me), I believe that palbo is one of several CDK4/6 inhibitors, so it might be worth asking your oncologist if they all have similar effects. I'll be suprised if they don't, but can fully empathise with your situation.

You don't say what dose you are on? It may be possible to reduce this. Also, Letrozole can cause similar problems with fatigue & muscle stiffness/soreness, as can Denosunab - Again, it might be worth asking about other AIs and/or alternatives to Denosunab..

I hope this helps a little. xx

Member

Re: Bone mets - please join in

Good afternoon everyone

 

I have bone mets in my upper spine, on letrozole, denosumab and palbociclib. pain controlled with Lidocaine patches and paracetamol.  DX was in March 2019. The big problem is fatigue from the palbo, so I am now on a 2 month holiday. Does anyone know if there is an alternative to palbo which doesn't have the same fatigue side effects? I am so weary all the time, can barely walk the dog (wee Joey), do housework, garden, go shopping etc. I try to count my blessings but not having family support I do get hacked off, and worry about maintaining my independence.

Any comments/advice welcomed.

 

grumpy

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Re: Bone mets - please join in

Hi everyone, results of ct say that my cancer is stable, doctor did say that my wall of womb looked very thick and he's was arranging for internal ultrasound . . He really made it out as if it was cancer, I got very upset.. so I asked to speak to my Onc nurse, who told me there is no concern for my womb, yes, it does look thick but they are not concerned about it, and there's no need for ultrasound.   One part of me is delighted my cancer is stable, other part of me can't stop thinking of perhaps issues with womb.  😢.   

Community Champion

Re: Bone mets - please join in

Sorry to hear you are struggling Avrelia. It's so tough at times isn't it?  Hoping you get your calcium levels sorted out soon and sending hugs your way.

Nicky xx

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Re: Bone mets - please join in

Hi there, I'm sorry to read about the problems you're having with high calcium. Mine in contrast is very low, so am swallowing what feels like lots of AdCal! I hope they get things sorted for you. xx

 

 

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Re: Bone mets - please join in

Thanks for the answer, it always sounds a bit reassuring when you hear that someone has had the same problem and he/she improved. Yes they have been trying the liquids, the Zometa and Vit D supplements. Nothing seems to work so far and they concluded that it is disease related. So if Eribulin starts working for me, it should be able to lower it. Its been  3 months now and I wonder what they are waiting for. I hope next wednesday when my appointment is will have more info about my future treatment. I am just sick of people and doctors who are trying to prepare me for the worst, when I am feeling ok and I do not think it is coming. Yeah it will come at a certain point but I am not ready yet. Wil not give up! Was even thinking of leaving the hospital, so fed up I am with everything. I spent half of my time there almost doing things which are not helping at all.

Sorry for the ranting post, just no sunshine on my street recently. It is only then when I decide to come here.

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Re: Bone mets - please join in

Hi, I am sorry you are going through so much at the moment.  I had raised calcium for about three months.  Have they given you any advice how to lower it? They told me to keep drinking water which I did, gallons of the stuff, and it gradually improved.  If it gets really high they can give you an infusion of bone strengtheners which should bring it down immediately.   My vitamin D was also low and I was prescribed supplements.  Sometimes it is just one thing after another and it is all too much, too exhausting to cope with.  My oncologist never says anything cheerful or optimistic in any way and I think they are all like that.  I hope things improve for you.  Thinking of you and wishing you better times xx

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Bone mets - please join in

Hi there, going to hard times recently. My calcium is high, phospate and Vit D low. My whole liver is covered with mets and it just took it 1 year to become like that. although I was on Chemos during that time.

Doctors are talking to me in a way to prepare me for the worst they said that it can come qiuck. But I feel great and I kind of not thrust this or just do not want to thrust.

My questions for you is about the calcium. Has anyone gone through such a period? What happened?

I am just fed up with the whole thing. Another one is that dentist told me I do not have enough blood going through my jaw and they need to do some repairwork on one tooth as they cannot extract it. I am so scared about averything!

 

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Re: Bone mets - please join in

Thank you for your kind words!

My mum has had a lot of radiotherapy recently, so I think it maybe the effects from this. So we're hoping! But you are very right, you cannot live your life from scan to scan. When we get her strength up, we will find her some hobbies. My mum worked in a school nursery before, but I think the duties will be too heavy for her to return, so it looks as though she is taking early retirement. Which I am pleased about.

 

Those are good ideas for gentle hobbies!! I will put them to her... Thank you!

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Re: Bone mets - please join in

One thing I’ve learnt with having SBC is to try not to worry too much about what scans might show. We have to basically learn to live with the uncertainty of the disease. So try not to worry too much before your mum has her brain scan and gets the results -  I know that is difficult to do. I think we all have our own ways of coping. For me it’s keeping busy and trying to distract myself from thinking about things too much. Hobbies are good for this - whatever you and your mum enjoy. I find reading and doing crafts are quite good as they are quite easy to do and don’t require too much concentration. I do know lots of people with brain mets though and although it sounds scary it is very treatable. But my advice would be to try and not worry too much unless and until you know that’s something you have to worry about xx

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Re: Bone mets - please join in

  • That is so uplifting!!! 🙂 great news!!  Thank you for sharing your story!!

My mum has skull mets too, but she said today that her head feels “fuzzy”. I said, it’s probably because you’ve been resting in bed all day (because of her back).

 

I’ve heard brain mets travel through the blood stream rather than from the skull. Has anyone else heard this? She has a brain scan the end of this month. I’m so paranoid and just want to know what is going on. So we’ll all have scanxiety all over again!! 

Its such an emotional time. I feel a wreck! One minute i’m positive and the next i’m totally worried! 

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Re: Bone mets - please join in

Hi, I’m on a similar treatment plan to your mum : denosumab, palbociclib (same family of drug as ribociclib), Letrozole and Zoladex. I found it took a few months to settle on to the treatment (mostly had issues with headaches, nausea and fatigue). But after that my pain really improved due to the treatment working. My disease shrunk by 50% and I’ve had stable scans ever since (1 year on treatment now for me). The meds have also helped repair my bones - I’ve got mets in my rib, spine, sternum and pelvis. The bones are now healing. I’ve also been able to stop painkillers because the treatment has been so effective. I was on oramorph initially due to the pain but now I don’t need to take any regular meds for pain at all. 

The ‘ciclib’ drugs are relatively new and they’ve produced some great results. We’re lucky to have access to them. I really hope your mum gets good results as well and the treatment plan gets her pain under control and feeling more comfortable. X

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Re: Bone mets - please join in

That is amazing!!! I love hearing these stories!! Thank you so much for sharing your experience! I read it to my mum. I know they inspire and motivate her. She is resting in bed today as her sacrum bone is aching and painful. She had medical cement injected to stabilize it.

My mums cocktail of drugs will be Ribociclib, Letrozole and Denosumab. What are your experiences with any of these ? (if you have used them)

 

What medications have you found best to help control everything? Do these drugs stabilize everything and stop things from progessing further or do they actually help to heal the bones?

 

I'm sorry for all the questions, but i'm very new here and we are trying to absorb all the information out there that we can.

 

Thank you 🙂 X

 

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Re: Bone mets - please join in

Hi secondarysister

Just wanted to add my experience. I am 51, was diagnosed (HER-, ER+) quite unexpectedly with extensive bone mets (sternum, ribs, shoulder, arms, skull + possible spots on spine) as well as lung mets in 2017 after years of unexplained pain. (My primary BC was in 2005/6). Treatment for my bone mets consists if monthly Denosumab injections (which my husband does for me) with some top up calcium tablets. It is not hard to bear at all. I have had a couple of zaps of radiotherapy but they only offer if pain is impacting your life and I have had to push for it each time. The worst bit is the pain, and it took me along time to accept that I needed long term regular pain relief. Getting that right makes my life significantly more normal (writing this as Iprepare to go to work)

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Re: Bone mets - please join in

Thank you for the quick reply, and the reassurance regarding the stats, it’s very depressing reading. I’m new to using this forum but I’ll see if there’s a way to search your previous posts to save you repeating a lot of the same info. I was only diagnosed in July but quite quickly realised it has spread to my spine (3 areas) and today my pelvis and liver (4 lesions). I’ve had chemo which hasn’t worked so now on Palbocyclib so fingers crossed that has a better result than the chemo xx

Community Champion

Re: Bone mets - please join in

Hi Bobbielew

Yes, I’ve had liver mets since 2013. I am oestrogen positive, HER2 negative (although for a while my then oncologist thought I was HER2 positive as I was just over the ‘line’ so to speak regarding being positive.) My treatments over the years have consisted of various chemos alternating with various hormonal treatments. None of the newer treatments such as palbociclib etc were available to me during this time mainly because they weren’t approved and also I am a long way down the line of treatments therefore I am not eligible to have them. This might sound awful, the fact I’ve had lots of chemo, but it’s not been as bad as it seems. They have tended to be short term whereas the hormonals are longer term and give fewer side effects. In 2018 I had a liver resection, where they remove the lesion but this was only possible at that time due to chemo having reduced the lesions in the liver to one. I then had nearly a year of no liver disease until the little uggers started growing again. Over time I have learnt a lot about my type of cancer and what treatments are available which is why I seem to know a lot (if you read my other posts) but I have also lived with secondary BC for a long time so have had that time to learn as much as I want. The statistics on google are way out of date, in fact they are the same as they were when I was first diagnosed with bone mets in 2008 so I wouldn’t look too far into them, they are very scary! According to them I should have been dead 11 years ago!
Nicky x

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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.

Community Champion

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...

 

Community Champion

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!

Member

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?

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 

Member

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.

Member

Re: Bone mets - please join in

Thanks a lot for your promptly response

Community Champion

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.

Member

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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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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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 ..  

Community Champion

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

Member

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. 💕💕💕

Community Champion

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.

Member

Re: Bone mets - please join in

That’s a really good idea Jill thank you xx

Community Champion

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.

Member

Re: Bone mets - please join in

Perfect idea! Thank you Janey xx

Member

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

Member

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

 

Member

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. 😘