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Recently diagnosed with bone met

21 REPLIES 21
Daisy1257
Member

Re: Recently diagnosed with bone met

Brilliant news!!! What treatment are you on if you don't mind me asking? 

kat504
Member

Re: Recently diagnosed with bone met

Coopswifey that’s great news that the treatment is working and the tumours

are shrinking 👏

Coopswifey
Member

Re: Recently diagnosed with bone met

Hi. I was diagnosed in April of this year with bone Mets to my spine, ribs and pelvic. I’m blessed I don’t have any pain. I just had my second pet scan last week and thank GOD the treatment is working. My tumors are shrinking. Good luck to you and stay positive. 

Mindy63
Member

Re: Recently diagnosed with bone met

@FindingDory Just wanted to say hello. I was also on August 2020 Chemo thread and remember your posts. I now find myself here but in limbo as haven’t had my official diagnosis or treatment plan yet so dont know how extensive my mets are as yet. One definite lesion on forehead and likely spine and pelvis. Shocked to the core atm. Hope you  are coping x

kat504
Member

Re: Recently diagnosed with bone met

Just wanted to say hi, I too am 39 and have just been diagnosed with SBC. It is all new and I’m still in shock. 

Coopswifey
Member

Re: Recently diagnosed with bone met

I have recently been diagnosed with bone met.  My doctors are getting my treatment plan together. I am really scared but I’m optimistic.  Sometimes I think the worse. Right now my cancer is in my spine and ribs. I don’t feel any pain yet and I hope I don’t. I’m most afraid of the the side effects from the treatment. 

Jaybro
Member

Re: Recently diagnosed with bone met

Hi worriednow

I’m so sorry you’ve had that diagnosis. I’m afraid I can’t offer any pearls of wisdom as my newly-diagnosed secondary cancer has taken a different direction (my eye socket, of all things, plus skin lesions on my neck and face which I thought were anastrozole-acne and a few suspicious areas thrown up by the CT scan, nothing confirmed yet). 

I’m not surprised you’re petrified - it is terrifying news in one way but we forget times have changed and treatments have changed even this last decade so what lies ahead might not be so unbearable. It will help to have contact with others who have or have had spine mets - but have you thought back to your primary cancer? Were you petrified then? I know it’s a bit different but the fact is you dealt with everything when, if you were anything like me, you felt nothing was manageable. Maybe it will be the same this time - not terrifying, not pleasant but all doable. I’m trying not to let my imagination go into overdrive, though I’m sure the first round of treatment will be panic-ridden, with loads of what ifs that never turn into anything except horrible anxiety I could have avoided.

So I’m sending a virtual hug to another newbie. We’ll work through our terrors and hopefully work out what’s worth being terrified about and what is imagined terror (something I’ve lived with all my life as a phobic).

Take care,

Jan x

worriednow
Member

Re: Recently diagnosed with bone met

Hello I have today been diagnosed with bone metsfrombreast cancer. Just shocked. Did not ask more at all . It  is in my spine just hoping not to other bones or organs. Petrified scared 

Sarahs
Member

Re: Recently diagnosed with bone met

Hi there not sure if I have replied before I too have bone met quite recently diagnosed I am 39 was 38 when diagnosed so know how you are feeling please message me if you feel you want to speak to someone hugs to you xx

paris
Member

Re: Recently diagnosed with bone met

Hi Jo. I can relate to everything you say. I too have mets in my spine, and pelvis and on the same medication as you and similar cycle timescale. I get lots of aches and pains but just brush them off, but last night I had some really bad pains in my hip, which radiated down through to my knee and ankle. It reminded me of the pain I was having before I was diagnosed and your description of tooth ache in the bones is so right! No one can understand what it feels like can they? So hard to describe. It set me off worrying now that the disease is progressing and I hardly slept. My mind at the moment is full of questions, how long have I got, will I wake up tomorrow morning, was that my last Christmas, am I ever going to see my grandchildren, should I give up work now, should a stay at work to keep me occupied! Its horrendous. I was referred to a macmillan counsellor last year, but she was younger than my daughter (30 yrs) and I just didn't connect with her. All I do is try to focus in the here and now and hope that treatments improve over time. Trying to keep positive is hard but the ladies on here are fabulous and have been living with secondaries for many years! This keeps me going! 

Take care xx

Timmycat
Member

Re: Recently diagnosed with bone met

Hi Jo7,

I've been reading your posts and am so sorry to hear about all you've been going through.  Also the fact that you're so young and your many regrets, I wish I could give you a huge hug.

You no longer have to feel lonely, as although I'm quite new to this forum, I've found much hope and love from the lovely members.

I noticed that you have the same diagnosis as me HR-Positive/HER2-Negative, but are on different drugs, mine are Ribociclib, Letrozole and Zometa, and was diagnosed last December and started treatment in January. My mets are in ribs, pelvis and probably spine, just had a CT scan recently but so won't know the results until I get a call from my onc on 19th Jan.

I have to say I love your description of pain as 'toothache in your skeleton' I wish I could have thought of that, it's perfect!! What pain meds are you on? Mine are continuous morphine 25mg twice a day coupled with paracetamol four times a day, this was done through the palliative care people at the hospice, they are brilliant.  I had no idea that excruciating pain was a symptom of bone cancer, I wish I'd had shouted louder at the beginning. 

There is a lot of positivity in people's posts, and as for my emotions....sometimes off the scale some days, so I desperately feel for you, and indeed Covid hasn't helped!

So try not to feel lonely, everyone here totally understands, I think we'd all love to comfort you, certainly to listen ❤. Good luck with your decisions, and my best advice is to ask questions, and ask again if you're still not sure, I wish I had asked more early on.

Always here to listen and message, sending love and hugs ❤ xxx

 

Jo7
Member

Re: Recently diagnosed with bone met

Thanks for your reply. Yes I’ve been on a waiting list for Macmillan counsellors now for over a year. I also did an online programme over 3 days and they are referring me to counselling through action cancer. Haven’t heard anything from them yet. I would go private but I seem to be paying for everything just now and I’m unsure because of covid whether they are open! I do have a breast care nurse but she’s retired and only works part time- it’s hard to get her although she will get back to me if I leave a message but I feel she doesn’t understand- she tells me things without really thinking which really upsets me over the phone- like in one sentence she basically said I couldn’t ever go back to work with children and literally threw away my whole life’s career in one sentence without thinking anything of it! I guess a year on, being away from my work and friends, and living back at home with my dad at my age is just getting to me! The festive season isn’t helping just now either as I’m missing family who have passed away. I asked all my questions at my last oncology appointment but I was made to feel like I shouldn’t be asking them and didn’t really get any answers! Also feel like because I’m young I should just be getting on with things and no one worries about me- one oncologist told me that- that they don’t worry about me because they know I’m sensible! Just a bit of everything really! I feel like I’m trying to ask for help and I’m not getting any! But I know everyone has bad days and better days! It’s like getting stuck in some sticky beans, and trying to walk through them! Lol! Will get there! Thanks!

Ruby2016
Member

Re: Recently diagnosed with bone met

Hi Jo,

I’m sorry to read that you are feeling lonely and overwhelmed. I am on the same treatment plan as you and by the sounds of it, diagnosed with bone mets just after you. Just referring back to one of your other threads, I have CT scans every 3 months. 

Do you have a breast care nurse or specialist nurse you can contact? This year certainly hasn’t helped with isolation and being apart from people. 

Would you consider counselling? I was offered some at my hospital but due to Covid it got postponed and I do see or Skype my own counsellor/therapist whenever I feel ‘stuck’.

I just wanted to reach out to you and not sure if this post helps but please keep in touch with us on here as no one should feel alone. 

Sending you a virtual hug xxxxxxx.

Jo7
Member

Re: Recently diagnosed with bone met

Hi, I am 38, diagnosed last year at 37 with a straight off diagnosis of secondary BC to the bone- mainly pelvis and spine but it’s my pelvis that hurts most. I am single with no children and I’m gutted. Lots of things going through my head and I feel I put myself down all the time- I should have got married and had kids earlier but you always think there’s time and I’ve had lots of family deaths and things happening in the last number of years so I wasn’t really thinking about any of my own life until unfortunately now! It comforts me to read all the positive posts too. It gives me hope. I’m also hormone positive and her2 negative so on palbo/letro/denus. Im actually a bag of emotions just now and have no idea how I feel! I’m on my 14th cycle of Palbo. Covid hasn’t helped things either has it? I feel very lonely and that no one understands. I had an app at GP yesterday and he said I was looking very well! (🙄lol)! He seemed a little amused when I said my pain felt like a toothache in my skeleton! He liked the description! 🙄 I just feel constantly worried and I’m trying not to be! Different scans showing different things and now I’m a bit lost and don’t know where I am! Help! 😬 I’ve some pretty big decisions to make too and I’m feeling very overwhelmed!

Jo x

Jools-50
Member

Re: Recently diagnosed with bone met

Hi Becci, I noticed there you mentioned in another post your cancer is er positive/Her2 negative.. same as mine, and my oncologist has told me there are many different treatments for this type of cancer, and more on the way..so that gave me much hope also

Jools xx

FindingDory
Member

Re: Recently diagnosed with bone met

Thank you Jools and i’m so sorry that you’re in a similar position to me. It’s just so hard to take everything in isn’t it? Sometimes it  feels completely surreal to me - this whole awful year in fact.
I’m also taking comfort from the stories on here too and hoping that it helps me find the strength to live the rest of my life as happy as i can possibly be, but its all just so raw right now i think. 
Bug hugs, Becci xx

FindingDory
Member

Re: Recently diagnosed with bone met

Hi Jan, thank you so much for your reply, i hope you get your scans soon and the results are good news for you. 
My breast care nurse has been there the last couple of times i’ve seen my oncologist & she seems lovely but i for some reason when she’s asked if i’d to talk more, i’ve just said no, that i’m fine, i couldn’t wait to get out of there to be honest, scared of hearing answers to questions i don’t really want to ask. But when i’m feeling a bit better i will give her a ring. 
Big hugs, Becci x

FindingDory
Member

Re: Recently diagnosed with bone met

Hi Sarah, thank you so much for replying to me & i’m so sorry you’re that you’re going through this too, just reading the words that you understand got me crying! I’ve been reading through some of the posts on the secondary cancer threads today and theres lots of hope out there & different/new treatments for us so i feel a little better than i did earlier. 
Probably Doesn’t help that i’m feeling awful from the Docetaxel atm so i’m super emotional! 
I was diagnosed the beginning of may this year with what they 1st thought was stage 1,  i’ve had a lumpectomy/lymph node clearance followed by another surgery because they didn’t get clear margins. 4 lymph nodes were cancerous & so my breast cancer became stage 3 grade 3, it’s ER/PR receptor positive, HER neg. 
I started chemo 31st July and i’ve had 4 doses of EC & now 2 of 4 Docetaxel. 
Some days are just so hard aren’t they? Going through all this can feel so overwhelming and lonely at times, but i’m hoping we’ll be able to help each other, big hugs to you too, Becci xx


Jools-50
Member

Re: Recently diagnosed with bone met

Hi becci

My story is very similar to yours. I was diagnosed with primary breast cancer in may, and to cut a long story short I had a CT scan in September which showed the cancer has spread to my spine and hip. I was in the middle of chemo, which was stopped immediately and I have been on letrozole and palbociclib, bone injections to start soon. I've 2 teenagers and when I was diagnosed with secondaries I couldn't even be around them I kept bursting into tears. It's still very new for us and I'm taking comfort from the stories on these forums from ladies who have been living with secondaries for many years. The treatments these days have come on so much, I'm putting my faith in my team and trying to get on with life. I'm starting back to work after Christmas, few months ago couldn't even have contemplated that. I keep reading on here that eventually you do reach a new normal, maybe it's just too soon for us. Stay strong xx

Jools 

Jaybro
Member

Re: Recently diagnosed with bone met

Hi FindingDory

I remember seeing your name around the forums. I am so sorry this has happened to you. I fully understand the bit about not asking the right questions - sometimes I think it’s because we’re afraid to hear the answers. I’m currently awaiting an ultrasound and an MRI for my own bc (I finished treatment June 2019) and I found myself deciding not to ask why.

I really think you should talk to your breast care nurse, if you have a good relationship. They know your case and will know what to tell you. Failing that, the nurses on the helpline here at the number above can be very helpful. These are very hard things to contemplate and only people who’ve ‘been there’ can really click with you. You are spot on about family and friends but I understand now that they are trying to protect you as well as themselves from reality. I’ve only told my one friend and she didn’t even ask why I need the tests - it wasn’t lack of interest, it was because she doesn’t want to think about things like that 😞

I hope you get some reassurances and hope you qualify for the additional treatment,

Jan xx

Sarahs
Member

Re: Recently diagnosed with bone met

Hi there, 

Just seen your post and wanted to reply and give you a hug, I am 39 and I have been recently diagnosed with the same, I have 2 young children and I understand your fears, anger all the emotions,I know that it's hard to try and stay positive, please message me if you wish hugs to you xxx 

FindingDory
Member

Recently diagnosed with bone met

Hi, i’ve not been on here for a while & i apologise in advance for the long post - i did used to post on the August 2020 chemo monthly thread, but after i had a bone scan in October (for pain on my collar bone above where i had my lumpectomy) & then further MRI & CT scans last month that has confirmed a bone met in one of my pelvic bones, i’ve felt i haven’t been able to chat on there anymore. The ladies are all lovely & most will be about to or have finished their chemo and i guess i just didnt want to be a downer to them at such a difficult time in their lives. 
My oncologist paused my chemo (i’d had 4 x EC, due 4 x docetaxel) whilst i was awaiting my scans & results, so i’ve had a 4 week delay inbetween. I’m now back on track with the rest of my treatment - I’ve just had my 2nd cycle of Docetaxel last friday which has been rough, 2 more to go then radiotherapy & hormone therapy still too. My onc has said that i may qualify for SABR treatment for this bone met but i’ve not heard anything yet and i’m due to see him again the 30th December. I don’t think i’ve asked enough questions, like i know that i now have secondary breast cancer so its’s incurable but treatable, but what does that mean for my future? He hasn’t spoken about my prognosis at all. I’m 40, we have 4 children, the youngest has just turned 3 and i look at him and wonder if i’ll even see him start school? I can’t bear to think about leaving my kids & partner.
I think i’m just still so in shock with it all, my thoughts go from disbelief, anger, denial, fear, worry, why me? What about the kids, my partner? It’s like i can’t think straight at all. How am i supposed to live like this? Everybody keeps telling me to be positive, which j usually am, but i feel so alone as well as tired & weary from the surgeries & chemo since May. My family & friends seem to still think that once my chemo is finished & i’ve hopefully had this new SABR treatment that will be it, i’ll be better & things can get back to normal. But things will never be ‘normal‘ again.
I just want to talk to someone who understands, I’m so scared & lonely.


Becci