Despite having been registered for a while now, this is the first time I have felt able to come and explore the forums. So please forgive me while I work out whats what.
I was diagnosed with Lobular breast cancer (ER+ve/HER2-ve) in April. After a multitude of scans it transpires that there is shadowing on multiple bones.The Oncologist said they are 90% sure this is metastasis. I had a bone biopsy taken about 12 days ago and am due to return for results on 27th Sept with a view to starting Palbociclib.
When I knew it was stage 2 breast cancer I remained positive and strong that I would get through this and be well again. Since I found out it’s stage 4 I feel like i’m on a slippery slope and literally have no control anymore. I am terrified and constantly anxious. i’m 40 years old and feel like I no longer have a future.
Can anyone identify with feeling this way? I am conscious that I am yet to receive the biopsy results and keep being told not to jump the gun but I also work in the nhs and understand that 90% certainty cannot be ignored.
I can completely understand how you’re feeling. I was diagnosed with breast cancer in March and found out almost immediately that is is also in my bones. I’ve started treatment am working full time and am calm most of the time. I can’t offer any words of wisdom I wish I could but I can sympathise and send you lots of positive thoughts x
Its good that you have decided to post, but obviously not good that you here in the first place. All of us secondary ladies have had to deal with absolute shock of being told your BC has returned and is incurable (although treatable), some ladies like Anne have had the secondary diagnosis at the same time, or nearly the same time, as the primary dx which is an awful double whammy. It takes all of us time to adjust to this news and some of us might have forgotten just how horrible this time is for you although Anne is a great example of getting on with things once the shock had subsided and was only diagnosed a few months ago. I was diagnosed with bone mets over 10 years ago so my memory is not so recent but I still know how awful that time was, especially as you wait to a full diagnosis and treatment plan. I think most of us feel more able to cope once we know what we are dealing with and what treatment we will be on and this can sometimes take quite a while for the oncologists to get full and accurate information. A bone biopsy should give a definitive answer so I hope you find out one way or the other what happens next. It could of course be that it is not bone mets and let’s hope that is the case but if it is please come back nd ask any questions, we are an informative and supportive bunch. Most of us tend to post on the Bone mets please join in thread which you can normally see at the top of that page of the forum. You can add a comment by replying to the last post on there, once you have logged in, it doesn’t mean you are only replying to the person who wrote that post.
I totally identify with feeling like that. I was diagnosed with primary bc last April age 41 and found out this June that it’s spread to my liver.
I’m still scared at points but no longer feel the absolute terror that takes over you in the first few weeks. Having a panic attack while trying to make the tea and thinking my god this is really happening. Waking up during the night thinking this is it. It’s game over for me.
Even imagining someone else living my life, having my lovely husband, enjoying my lovely children and grandchildren. The fear really does engulf you.
I thought only those on death row could understand a pinch of how we feel but we’ve done absolutely nothing to deserve being here.
Now I feel differently. I’m not on death row.
There are lots of women living for a very long time with mets and I fully intend to be one of them.
I’m on my second cycle of palbociclib, letrozole and zoladex injections and I’m having very few side effects.
There are lots of exciting trials going on for secondary bc and I believe we will be around to benefit from the outcomes. So even if you do have mets it is not the end by any means for you.
I was told by a prominent bc oncologist that palbociclib has a very High chance of getting me into remission.
If it has spread you might benefit from joining twitter where you can find out about some of the new research and also the campaigning for secondary bc which is really gaining ground at the minute. I can give you tips on who to follow if you like.
I really hope it hasn’t spread but if it has you will cope and things will get better. Xxxx
Hi Kath
Yes I can definitely identify with the feelings of terror and utter sadness when I was diagnosed with secondaries last may. I was very unwell at that time and honestly thought I was on a slippery slope and would never leave my bed again. Following chemo I again have a good quality of life and have worked until recently and been enjoying lots of holidays?. At first I couldn’t think further than a few weeks ahead as I found it too overwhelming but as time has gone on I will now make plans further ahead . I think at first it was like cancer had me gripped by the throat now it hovers behind my back!!! I also can identify with everything ftf said.
As the other ladies have said once you have a treatment plan in place and start it you will feel more in control - the drug you are starting has had excellent results and many ladies on here have been living with bone mets for 10 years plus. Be kind to yourself try to keep busy and make plans to do nice things like meeting friends for coffee - I still find distraction helps and have a good clear out when waiting for scan results!!!
Wishing you all the best for your appointment
Sarah xx
Hello everyone and especially newbies. I was diagnosed in Feb17 straight to stage 4 no lumps or bumps visible just leg pain turned out to be met in my hip. I have had a couple of hormone treatments and been on palcocilib and letrozole since Dec and tolerating well working full time going on hols etc. Have had radiotherapy 4 times to bones and scan results again at the end of this month . Have some new pain again so expecting bad news but actually I am living a normal life with my wonderful family and I did not think I would get this far so Let’s enjoy ourselves. Love to all xxx. Wendy