It's spread to my spine

Hi

So sorry to read you have been given this news so close to Christmas when you should be able to enjoy the family festivities without yet more 'what if's' gatecrashing the party.

There are quite a few ladies in the Secondary Breast Group with spine / bone spread so do use the link and join the group. This is treatable in various ways from bone strengthening meds to stabilising surgery (if needed) and yes there is hope for this to be kept stable for many years.

Obviously you were hoping for better results from the MRI but good on you for not ignoring the signs and pushing for this to be carried out.

Have you been given a treatment plan yet ?

Hugs, G n' J

Thank you, Dreamthief.  I don't know the plan yet.  I had the lumpectomy in June for the tumour in my right breast and they removed 1 lymph node which was clear. They said they found DCIS in the right breast during the surgery and removed it.  I was in the second trimester of my pregnancy so the plan then was to wait until I delivered the baby to have radiotherapy.  The baby was stopped moving around week 38 and was delivered by emergency c-section.  A couple weeks after that I went in for the radiotherapy planning and then shortly after that had 3 weeks of radiotherapy.  I didn't have the radiotherapy at a good place.  It was chaotic and I wasn't treated that well.  I did try several times to tell doctors over this past year that I was having pains but it was often dismissed as pregnancy-related, especially when the surgery showed my lymph node was clear.  Every time I asked if they would check me elsewhere to see if I had cancer anywhere else they would talk down to me.  It's been a really tough year.

So I'm waiting now for the CT results of my torso and for the oncologist to call me and say when I can come in and talk about next steps. Thank you for saying it was good that I pushed.  It's really not comfortable to keep pushing but I feel like I don't have a choice even if they get frustrated with me. So far every time I've pushed it's turned out to be something serious.  I could be upset that this was found late but the thing is if I gave in to them pushing me back it wouldn't have been found at all.  Everyone's been convinced that I was "cured" with the surgery and I was scheduled for a follow-up mammogram for next June! That was all the follow-up they thought was needed. 

I really hope I can have at least a few more years.  I'm gonna hold on to that.

This is my baby's first Christmas.  We had 2 miscarriages before him.  I just want to spoil him and cuddle him and make sure he knows in the future how happy we are to have him when he looks at the pictures from Christmas Day.  It did put a damper on things but tomorrow I want to pretend I don't have cancer and enjoy the time with him.

Hi .  I have secondary breast cancer ( details on profile).  It was a big shock to me when I received the diagnosis Jan 4th 2018.  

There are new treatments appearing all the time. I’m on Ribociclib tablets and monthly injections in bum

I had back pain in November 2017 ( later transpired it was Osteoarthritis)  a very vigilant GP married to an Oncologist put me forward for a scan “ in view of your history “ and it was picked up.  

The Awake thread ( Breast Cancer General) is fairly busy and friendly with a few of us secondies on it. I have problems sleeping sometimes . 
There is a group on Twitter /FB too called secondary. sisters for younger women. 

I am not in that category but have a young attitude I would say. I was a Youth Worker in N London for 18yrs. 
It will be a bit easier when a plan is in place.

Love Judith x

Thanks jmp.  I will feel better once I know if there is anything that can be done to get this under control, and what the next steps are.  It's such bad timing with the holidays.

Thanks for telling me about the Awake thread.  I'm always up super early and it's really lonesome.  I don't have social media accounts anymore but I may create new ones.

N London is where we moved to when we came to the UK in June.  I don't know London or the UK very well yet but the north side seems a lot less hectic than the centre.  It's been nice coming home to a peaceful apartment and being able to sleep soundly. 

I def need to connect with other cancer patients, especially people who have secondary.  People irl who I thought would call or msg and check on me seem to actually be avoiding me.  Of course, life goes on.  I have to admit that despite knowing that, and not wanting people to drop everything and be sad I want them to live their lives, it still hurts to see how easily they carry on in a world without me.

I really hope they tell me they have a plan.  I want to latch on to it and push forward like it's possible for me to grab another 10+ years for myself.  There's so many things I want to do.  If they tell me it's too late to do anything that will be really hard to hear. I'm glad these forums exist.

The past few days my ribs have really started to hurt.  My arms hurt more and sometimes it feels funny when I swallow and I have trouble drawing a good breath.  It annoys me that I have more symptoms to tell them about when I do get back in to see them about the CT results.  I always feel that when I discuss symptoms people invalidate them ("it's probably nothing", "it's probably just etc etc ").  I wish I could just once find a doctor who has my personality type and as soon as they hear my complaints will say "let's get to the bottom of that and get you feeling better!".  I want a type A overachiever underdog-loving doctor. With the energy and obnoxious ambition of an exercise workout tape guru.  And impossibly, I'd like them to be an introvert too so they understand my need for peace-quiet-restorative time and my discomfort with extreme eye contact and constant requests to smile and be perky.

Sorry to hear that your going through this and had to really push to get checked out. 

Also join all the groups that relate to you on here, I’m in the secondary cancer and the secondary cancer in bones and the younger group. And Breast Cancer Now also has a forum that’s useful. 

I had breast cancer 2012 and this year found that it had gone to my bones. Treatment starts properly in the new year and they are pretty positive of keeping the cancer at bay, so many treatments now. I hop you get a good plan, it does help anxiety when you know what you’re facing x

Nickyd1, thank you for all of the info!  I will create an FB account and look for those groups. Also the groups on here.

You start treatment in the New Year?  Maybe we will be chemo buddies.  I don't know yet what the oncologist will recommend but I will post an update as soon as I find out.  The CT report shows it's in my liver too.  The gp, nurse, and surgeon are all talking about treatment still so I take that to mean they still think something can be done.  Waiting is tough. I am really looking forward to hearing the plan.

"I wish I could just once find a doctor who has my personality type and as soon as they hear my complaints will say "let's get to the bottom of that and get you feeling better!".  I want a type A overachiever underdog-loving doctor. With the energy and obnoxious ambition of an exercise workout tape guru.  And impossibly, I'd like them to be an introvert too so they understand my need for peace-quiet-restorative time and my discomfort with extreme eye contact and constant requests to smile and be perky."

this is the funniest thing I've read in a long time

please don't lose the sense of humour

I find the radiologists to be adorable but useless, incapable of withholding any information, they just seem to blurt it out.  Perfect for post mammogram ultrasound sessions, no need to wait around for results, they just show you the screen and tell it like it is. 

They can usually be relied upon to share in depth analysis of scans, more so than even the bluntest of surgeons. Oncologists on the other hand are really cagey, reluctant to commit to any firm diagnosis but quite good at calming and reassuring nervous patients. 

I did have an obnoxious nurse who I could tell was waiting to stroke my arm and tell me she was very sorry but nothing could be done. Which might have been because I told her she should remind herself of the hospital mission statement blurb saying all patients would be treated as 'urgent'.

2020 is going to be my year of attempting to keep my mouth shut. Or at least apply more tact.

Carolyn

xxxx

Hi there, 

i think you joined the group I suggested, I hope it helps as there’s loads of younger women there. 

They investigated my liver too, I think it’s common to be in liver with bones. 

How you doing now? Got any appointments lined up?

I've started my treatment, riboclib tablets and Letrozole, denozumab and zoladex injections. So far so good! Back in two weeks to see how my body is coping.

Nicky xx

Hi, Nicky

Yes, thank you!  The FB group has been great.   I really appreciate the suggestion.  I've found a lot of support and inspiring stories there.

I finally have the first oncologist appointment on Wednesday.  Really want to know what the options are.

When did you start treatment?  Were they good about explaining all options and pros and cons? How are you feeling? How often will they check you to see if it's working?

I've had pains and numbness (now in my face as well) and not doing as much as I'd like at home.  So ready to be on track to healing. 

Oh, and not sure if I said here but I did on FB.  The CT did show that I have it in my liver too.