Breast spread to spine and hips

Hi, so sorry to hear of your diagnosis.  I can imagine how scared you are for you and family. Do you know when you get results of biopsy? Maybe once you know treatment etc you will be in a better position, the unknown is the worst.  

Not the Christmas you would have wanted! Can I ask what your symptoms were? 

I am 49 with one daughter and a granddaughter, my current situation is up in the air.  I was told two days ago the tumour that was found on my adrenal gland is highly likely cancer but they don’t know as yet if it’s secondary to my breast cancer of 10 years ago or a new primary of the adrenal.  If it’s adrenal there is still a very slight chance it’s benign.  The not knowing is horrible.

Ann

x  

Hi PaisleyLighthouse  Not what anyone wants to get over xmas a diagnosis of secondary cancer to your bones. I have been where you are and it all such a shock i know. You are on the right track, they have done the bone biopsy and as soon as you get the results they will start you on the right treatment. It would take me to long to tell you my story but you can read a little about my journey on my profile page.I was diagnosed with secondary bone cancer in 2020, my bone biopsy diagnosis said it was the same cancer has my original breast cancer in 2004.I was put on chemo tabets and a selection of other medication,i did unfortunatly have to have surgery on my spine because it was crumbling but i am now well and feeling well. When you get started on medication you will feel a lot better and more in control of the situation its all such a shock now. I was told by my oncologist there are many types of chemo out there and if one does not help there are others. I have been on mine since May 2020 and fortunatly for me i am doing well on it, we never know if or when this will change but fingers crossed we live each day at a time. I take a tablet for 3 weeks and have a week off. Its all very raw at the moment it will take time to get your head around it all and if you are anything like a lot of people on here there will be a lot of crying, not knowing were to turn, and in my case drinking a little too much wine, but wharever makes you able to cope is OK.I know quite a few people now who have had the same diagnosis as us who are 10 years on treatment and still keeping well so there is hope for us all. Please try to keep well, look after youself and dont be afraid to cry and scream and ask for help Dawn x

Hello thank you for your reply.

I've had arthritis in my hips and back for years so the fact that i was in more pain than usual didn't ring any bells.

I originally went to GP as i had pain under my right ribs and thought it was a gallbladder issue. The doctor said she was concerned it was related to my earliet breast cancer and sent me for a.blood test. The very next day my Gp rang and said I had all the markers for bone cancer and arranged ct scan and bone scan which.were carried out just before Christmas 

I got the results on the 29th than i have multiple tumours on my spine and pelvis. There is 1 area they don't think is same cancer though which is why i had the biopsy.

Yes its the not knowing, i can't seem to concentrate on anything. They mentioned CD6K I may have that wrong, apparently its a tablet I may need to take.

I don't know when my results will be. I've just had mri aswell.

I really hope yours is benign and hope you fi d out soon x

Hello wino love the name! Thank you for your reply. It's sp helpful to speak to someone who has been in my shoes

All i ever wanted was to be a mam and i dread not being here for my boys. 

Thank you i will click on your.profile.and read your journey if that's ok 

Im really glad to hear you're doing well on your tablets they have mentioned cD6K or something but I think i have the name of that tablet wrong. 

Yes I have done alot of crying but I think I'm gradually getting my head around it. It's strange I've found people who are close to me are actively avoiding me. I've heard this is usual though I guess people don't know what to say. 

10 years is amazing. Fingers crossed and that I get my results from the very painful biopsy soon. Did you have the bone biopsy? I came out of there swearing I'd rather h2abe have had childbirth again than that!

Best wishes and again thanks for your really helpful reply x

hiya

Im in the same boat as you I think, in spine hips and iliac from a tumour in my right breast, am 50 with two young kids, found out in June and just really wading through treatment, I hope you are doing okay in processing this all. I came on here in search of positive stories as it was just so awful hearing the words as I can imagine thats how you re feeling. Ive told my children its breast cancer and trying to make that a normal word for them for the time being.

Sending love your way x

Hiya gypsy

Yeah I'm trying to be open with my kids too. It's the best way as it's a part of all our lives unfortunately.

How you getting on with your treatment? I've got to start Letrozole and I'm abit scared. I tried Tamoxifen a few years ago and I was so moody on it. I'm hoping I'm going to be ok. Are you on anything like that if you don't mind me asking?

Sending love straight back to you x

Hi lovely,

Im on palbo three weeks then one off, Letrozole (I started on Tamoxifen) and denosimab jabs for bones then Zolidex jab. Im on pregabolin too and I take pain killers, magnesium and I was on Morphine and thats avail if I need it. Then cbd oil for anxiety.

The L is okay, Im a bit hot flushy on it and v weepy (but I think thats my diagnosis and freaking out about the kids more). The palbo is okay  - am a bit tingly fingered sometimes and the others Im putting up with.

If Im really honest my emotional state is probably masking a lot of the side effects as Im in a state of panic and can just hear my heart thumping most of the time- can't really face taking anti depressants they like to offer, I think fear is hiding any other effects of us just feeling like shit in general!

I am having brilliant therapy thru the Sara Lee trust and reiki is helping. I went to see a nutritionalist but the Royal Marsden who I went to for a second opinion to (they agreed with my NHS course of treatment) thought that was all tosh! No nice food etc. I mean...

Also I hate my username but can't change it, beyond naughty and its not funny! As none of our diagnosis's are. 

I hope you are okay, these are early days for you. Ive been told there are lots of treatments and patients like us can live for years. Im trying to steer in that direction as my first reaction was to google and that was just not a good thing or as my oncologist reprimands me, completely out of date.

Txx

p.s first scan is next weekend, so anxious but fingers crossed.

Lots of love - here any time x

Oh I had to stop with the Google, I read somewhere I'd only have 6 months left and tried to get through Christmas thinking it was my last...dreadful. I only go on here now if I wanna know something.

I'm in pretty much the same as you but instead I take Abermaciclib instead of pablo. I had my 1st bone injection today and zoledex yesterday, I'm so confused with it all I think I'll feel better when I'm in a routine with it. Hoe have you found the Palbo? The Albermaciclib they said would probably upset my stomach so they gave me something for that.

I already take pregabalin for sciatica and I've got the morphine too. I was on Citalopram anti depressants a while back for anxiety and they were great for stopping the pounding heart beat, they aren't for everyone tho it's how you feel about them isnt it 

I've been having therapy for years and that's been great as I've found alot of people have funny reactions or they have become distant. It's great having someone to offload to isnt it.

Ii thought about seeing a nutritionist but I'm undecided on that. A woman I know keeps messaging me saying stuff like 'I'd easily get rid of the cancer if I had a green smoothie every day' and if I'd had  vegetable smoothies over the years I wouldn't have the cancer now! I think I'm gonna block her if I hear it again!

I really hope your 1st scan goes well  there's so many tests and results and waiting with all this isn't there. I'm here if you wanna chat or offload xx

Ps what is Reiki? I've heard of it but not sure how it works, thanks x