65025members
342555posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Diagnosed with spine mets

27 REPLIES 27
Highlighted
Member

Re: Diagnosed with spine mets

I just want this fear to go and to have maybe 5 mins where I don’t think about it. It’s draining me so much, it’s only a week so I know I need more time to get my head round it all...will I ever though? I called my bc nurse but she’s new and really not reassuring at all...very stumbley with words and then goes all quiet on me...not what I need right now! X

Highlighted
Member

Re: Diagnosed with spine mets

Hi Lollypop,

It’s much too early for you to start to get your head around it. Unfortunately there’s no way around what you feel now, all of us on here have been there. It’s absolutely horrible and I remember it well. What I can assure you, as others told me on here at the time, it does get easier. Stay strong 💪 you got this! X

Highlighted
Member

Re: Diagnosed with spine mets

Hi mermaid007 

thank you so much for your lovely message ❤️ I know I need to change my mind set and think more positive but my faith has completely gone and I’ve convinced myself that nothing will work for me even with my oncologist telling me he expects me to do well and better than most. I think I’m pushing myself to feel better than I should less than a week on. I don’t want to leave my kids and I’m just petrified all the time it’s really draining me. Your story has given me hope as most on here have, I need to give myself a break in think. I’m so glad your doing well and I hope it continues for a long long time xx

Highlighted
Member

Re: Diagnosed with spine mets

Hi Lollypop,

My extensive bone mets were found 5 years ago ( 16 years after my primary) I’m doing really well. I started off on Exemestane and Denosumab then had a progression and went on to Faslodex. When the new drugs became available they added Abemaciclib to the mix. So 5 years down the road and only on second line of treatment. The new drugs like palbociclib weren’t even available to us 5 years ago. So our aim is to get as long as we can out of each drug and then new ones come along. 

The most difficult think is “The Mind” and we all go to dark places but once your treatment kicks in and you start getting a few good scan results it soon becomes a bit easier ... the new normal. Nobody knows how long they have left including the seemingly healthy people. In fact I’ve lost a cousin and a colleague who on paper should have outlived me for sure. All any person on the planet has is “now”... this moment this minute.  I’ve been trying to make this my mantra and enjoy each little moment of every day. Everybody should be doing this not just those with cancer as nobody can know how long they have. 

I hope this helps a bit dear lollypop xxx

Highlighted
Member

Re: Diagnosed with spine mets

Spoiler
 

Hi I think you will feel better when treatment starts. More in control. I know exactly how you feel. I say I won't talk about it then a friend says so how are you? And off I go! I've known about the secondaries since 31st October, never has there been a more scary Halloween! At first I woke every morning with those horrible thoughts. But now I think how do I feel today? I do a kind of body scan. Get up and keep as busy as possible. I hope your thoughts will calm and you will be able to feel more positive soon. At the min I'm OK.  Tomorrow could be different if know that. But I'm thinking of how I feel now. Take care. It's always OK to cry especially if you feel better. Lots of love 💕 xx

Highlighted
Member

Re: Diagnosed with spine mets

All I do is worry all day long. I’ve had a cry today and that does help sometimes. I’m sure once I see my oncologist again Wednesday and my treatment starts I will feel better ( I hope ) I find myself talking about my diagnoses all the time even when I don’t want to it just pops up I can’t seem to not talk about it. Even if I’m not and I’m having a normal conversation it’s at the back of my mind still. Will that go away in time? Xx

Highlighted
Member

Re: Diagnosed with spine mets

It's all a worry isn't it? I'm just trying to live life as it comes. I try to bat away the watifs from my mind as much as I can. I love being around people who don't give me the 'bless face' but talk about other things. Chatting on here really helps as we all know the fears and hopes we have and can support each other. Love 💕xx

Highlighted
Member

Re: Diagnosed with spine mets

My bc nurse said they would scan me after 3 cycles as the meds need a chance to really work. I think they scanned you to early on. I hope you get a better result next time it must be so disheartening and that’s my worry on my first one xx

Highlighted
Member

Re: Diagnosed with spine mets

Hi yes you are exactly right about the tablets needing more time. My first ct was in November to confirm mets in liver and plura of my right lung. Then I was put on ribiciclib and fulvestant after a biopsy confirmed this would be best for me. Onchologist said its brilliant treatment. Trouble was they scanned after 2 mths on meds not three as the first month was test after test before meds started. The bc nurse said this would be taken into consideration. But after scan they said there was fluid on my lung and maybe meds needed to change. 3 other treatments were mentioned including chemo. I hadn't expected that as I feel well and breathing after horrible cold was now much better.  Thank goodness for the Bc nurse. She pointed out that meds had only been given for 2 mths. They then all agreed, because i look and feel well, to keep me on them for 2 more months and scan again. I've had very little side effects so I'm hoping they will show better results next time xx

Highlighted
Member

Re: Diagnosed with spine mets

Sorry you didn’t have good scan results jennie60, what were they? Maybe you more time for the tablets to work? I know I will get my head round it all and hopefully not think about it all day every day. All the ladies on here so far have been lovely and so supportive It’s nice to have people to talk to who really do understand how I feel xx

Highlighted
Member

Re: Diagnosed with spine mets

Lots of love Lollypop. This forum is the best place to make you feel better. I didn't have the best first ct scan results recently and it does knock you sideways with worry, but the lovely ladies on here said it's OK to worry but keep going, things will improve with time. Keeping busy with what I enjoy doing really helps. I also do yoga and follow some meditation videos to relax me. Take care. Hope you continue to sleep well and feel more positive 💕xx

Highlighted
Member

Re: Diagnosed with spine mets

Thank you both for your lovely replies. I feel better after a good sleep last night, I know it will get easier and it’s not been long so I’m still in shock. I’ve also read lots of positive things online about the targeted medication and I’m praying it works for me, although if the first lot don’t my oncologist had said there are other options...it’s all so much to get your head around and I really thought I was going to beat this evil disease and I think that’s what’s upsetting me the most. Thank you all so much for being so kind and reassuring me xxx

Highlighted
Member

Re: Diagnosed with spine mets

Hi Lollypop,

 

Sending you lots of hugs, this is a terrifying place to be and it is difficult getting your head around this all. You've found a great place to come to for support, postivity and helpful info from. I find it so comforting to pop on here and be able to chat to others who are going through it.

 

I am 39 and was diagnosed with secondaries to the spine in January this year, after only having finished all my primary treatment in May 2019. Oncologist suspects that I must have had some cancer cells already in the spine but they didn't show up on CT scans and chemo hadn't gotten to them as they weren't active at the time of treatment.

 

My treatment plan is Zoladex, Letrozole, Denosumab and Pablociclib. From what my Oncologist has told me and what I have researched online, these drugs are said to be excellent. I have friends of friends who reportedly have a similar diagnosis and are 6 years into their treatment plan, one lady that I happened to have a very brief conversation with told me she was diagnosed straight to stage 4 metastatic at age 42 (but she didn't say where her mets were) and 4 years post initial treatment and on hormone therapy she has NED (no evidence of disease). There are a lot of very hopeful and positive stories out there and all of my clinical team have told me that the positive mindset makes a huge difference.

 

I also have days where I feel really down and terrified, but I find this lessens with each step of my treatment plan and the more trust and confidence I develop in my clinical team and the treatment. I have also had counselling and hypnotherapy in the past for my primary treatment which I found exceedingly helpful, the hypnotherapy especially helped with my anxiety. I had this for free through my local hospice, who were an amazing source of support and I have been offered this again now that I have secondaries.

 

Music is also very distracting - when I can't concentrate or my mind is going haywire, I stick some meditation music or my favorite happy playlist and it seems to bring me some relaxation and cheers me up a fair bit.

 

Don't be afraid to ask for help and keep talking to your clincial team and your GP about how you're feeling. The mental and emotional side of things seem to get a bit left out I find, so I make a point of bringing it up at all my appointments and I've had some really useful feedback from my nurses especially (not to mention lots of hugs) and my GP about complementary therapies or resources that I could try. 

 

Take one day and one step at a time. Always happy to chat if you want to any time, it feels a bit less scary when you know you aren't going through it alone xxx

 

 

Highlighted
Member

Re: Diagnosed with spine mets

It's horribly unfair but it does get easier with time, we all remember those early weeks/months they're so difficult, I think I say and shook for weeks on end. Life goes on as usual now though and it's probably hard to imagine but I sort of forget about it until the next appointment rolls around.

let your family take care of you during this difficult time, I found counselling also really helped too if that's available to you xx

 

Highlighted
Member

Re: Diagnosed with spine mets

Thank you for replying, I’m staying with my family today as I can’t be alone. I hope We’re all here for 10 years + even though that’s still not enough time is it. I think I need a good nights sleep tonight and that will help my mood, it’s still early days for me it’s not even a week yet so I think I’m still processing it all. I’m just so sad this has happened to all of us it’s so unfair xx

Highlighted
Member

Re: Diagnosed with spine mets

I'm sorry you are having a bad day, how about asking to see the Oncologist or speaking to your Breast Nurse, to ask some questions.  Your diagnosis sounds very similar to mine and my Oncologists have been very positive and have said they're aiming for 10 years + ? (no promises of course).  He said that this area of medicine is advancing at an incredible rate and patients are treated completely differently to even a couple of years ago. There are so many new treatments coming out all the time, who knows what will be available to us in the not too distant future.

It doesn't help if those around you aren't being positive, don't read internet statistics and tell others not to, they are out of date and will only worry you (another quite from my Oncologist).

Keep putting one foot in front of another and eventually the fog will start to clear.

xx

Highlighted
Member

Re: Diagnosed with spine mets

I’m sorry about your diagnoses 😢 I’m having a really bad day today and I’m full of fear and worry, I can’t stop thinking about it. I try and distract myself but it doesn’t seem to work, will this feeling go? Everyone around me is so sad which is making me anxious. I keep thinking how long have I got left and will the tablets work etc...I’m a mess and so frightened xx

Highlighted
Member

Re: Diagnosed with spine mets

Hi Lollypop

I'm sorry to hear of your diagnosis and that the Chemo didn't work very well for you.

I have a very similar diagnosis to you, Lobular in breast and lymph nodes with mets in lower spine and sternum ER positive and HER2 negative.

I have had no surgery except a lymph node biopsy in March 2019 and was then put straight on to the same drugs as you with the addition of Abemaciclib which I believe is the same group of drugs as Palbociclib.

I've had good results so far and am hoping it continues to work well.

I have read that lobular often responds well to hormone suppression and not so well to Chemo so try to keep hope, this treatment might surprise you (I would definitely ask about Abema/Palbociclib too).

I too have young Children, it's so hard to wrap your head around such a shocking diagnosis and have to slap a smile on for the kids but it does get easier with time.

Best Wishes x

 

 

 

Highlighted
Member

Re: Diagnosed with spine mets

I am so glad to hear that Lollypop. Do please look up the YBCN on Facebook as it’s a really good private and safe place to chat. Also feel free to direct message me anytime if you want a chat. Or of course you also have this forum. I like to think of this as more of a marathon than a sprint so you’ve just got to keep on going. The first few months are the hardest when you’re getting your head around things. But take things easy and make sure you do lots of things that will lift your spirits and give you something else to focus on. Take care and look after yourself xx

Highlighted
Member

Re: Diagnosed with spine mets

Thank you so much you have no idea how much you have helped me. I’m sure over the coming weeks I will have more wobbles and question things but I will come on here and I’m sure I will be reassured again. Xx

Highlighted
Member

Re: Diagnosed with spine mets

Never give up hope. I find if I just carry on with normal life then it keeps me busy and distracts me from thinking about things too much. You’ll have bad days but that’s ok. Just concentrate on your family and the things you enjoy doing. And my philosophy would be to assume treatment is working unless and until I am told otherwise and even then my oncologist has assured me there are plenty of medication options in their black bag to try so there is always a Plan B, C, D etc. Xx

Highlighted
Member

Re: Diagnosed with spine mets

That’s so positive and really boosted you I bet. I’m sure when my treatment gets going I will feel better about it, I’ve just got it in my head it won’t work and that terrifies me, although I shouldn’t be so negative I know. I will look into what you’ve suggested thank you, and your so right we’ve got loads of living to do yet! X

Highlighted
Member

Re: Diagnosed with spine mets

Wow 9 years that’s amazing! I will ask about that thank you ❤️

Highlighted
Member

Re: Diagnosed with spine mets

Hi Lollypop, I had my first scan since starting treatment a few weeks ago and was really pleased to find out that the treatment is working. I’ve pretty much had a 50% reduction in size of all my tumours and mets (several areas in the right lung and bone mets in cervical spine, rib, sternum and pelvis; plus a huge soft tissue tumour next to my sternum). So it’s looking really positive. My next scan will be in April and if that’s good as well I will switch to having three monthly appointments and treatments rather than monthly which will be great. Denosumab is really good at helping with bone pain and repairing bone- back when I was first diagnosed morphine couldn’t even get on top of the pain but now I don’t need to take any pain killers at all. Plus my sternum had been pretty much eaten away and that’s now repairing and looking more solid. You’ll find that different hospitals have different regimes for it - some have the injection every 4 weeks, others every 6 weeks and others every 3 months. My hospital start you off on 4 weekly intervals and after 6 months if you’re happy they will switch to 3 monthly injections. It might be worth asking your team about Palbociclib as well and whether you qualify for it. It’s for hormone positive and HER2- cancer (so the same type as yours and mine) and it’s the new wonder drug that has only just become available on the NHS a few years ago. It’s been getting some really good results in terms of arresting disease progression. It doesn’t work for everyone but if it does then it really is good. NICE have guidelines about who can receive it though as it is very costly but if you look it up on this website you can find out more about it and maybe ask your team? I really think the important thing is to take some time out to get your head around things and then try and keep positive and focus on your treatment. There are so many ladies out there living full and active lives following a secondaries diagnosis and some for 8, 10 and 15 years post diagnosis. We’ve still got a lot of living left to do xx

Highlighted
Member

Re: Diagnosed with spine mets

Hi Lollypop,

It is so scary at first and really sorry the first treatment didn’t help with your spine mets.  I would definitely ask about them giving you a drug called Denosumab.  It’s usually given every 2-3 months as a small injection (either at GP or hospital).  It’s kept my bone mets stable for over nine years now.  xx

Highlighted
Member

Re: Diagnosed with spine mets

Hi pawsome. 
thank you for replying, how are you finding the treatment? Have you had a scan to see how the meds are working? I’m sure I will feel better once my treatment starts but I feel like I’ve been hit with a sledgehammer and that I won’t be around much longer and I’m so terrified. X

Highlighted
Member

Re: Diagnosed with spine mets

Hi Lollypop - So sorry to hear about your diagnosis. I got my diagnosis (bone and lung mets) at the end of September last year. It feels scary at first but once you have a treatment plan in place and get started on it I think that helps. I’m on letrozole, zoladex, denosumab and Palbociclib. So similar to you - except with the addition of Palbociclib. It is very doable this treatment plan. What I was also going to say is that if you are on Facebook look up the ‘Younger Breast Cancer Network (UK)’ page and if you private message them you can ask to join the YBCN private group for living with inoperable/secondary cancer. It’s a group for women under the age of 45 and all the ladies are really supportive and it’s a great place to chat privately and ask questions. I was 26 when I got my primary diagnosis and 41 when I got my secondary diagnosis. I think it helps to talk to other ladies in a similar situation xx

Highlighted
Member

Diagnosed with spine mets

Hello, 

I was diagnosed with grade 2 lobular breast cancer in September 2019, ct picked up suspicious areas on spine but couldn’t be confirmed. Did 4 rounds of ec chemo then one paclitaxel, had a ct scan 2 weeks ago and the results weren’t what I had hoped. The chemo has shrunk the breast lump and made it softer and that’s about it. I was also told that what they picked up on my spine was indeed secondary cancer, my chemo has been stopped and I’m now starting targeted drugs of letrozole, goserelin and bisphsophonates to slow the growth and try and prevent spread for as long as possible. I am er positive and HER2 negative. I am looking for support and advice as I was only diagnosed on Tuesday this week and I am struggling and very frightened. I am 35 with 2 boys 10 and 14. X