Secondary Breast Cancer - Bone Metastases

Hi and a very warm welcome to the online community

I'm not a member of this group but I noticed that your post hadn't had any replies yet. By replying to you it will 'bump' it back to the top of the discussions list where it'll be more easily seen.

While you're waiting for replies if you you type 'letrozole', 'pertuzunab' and 'trastuzumab' separately into the group search bar, it will bring up any previous posts which mention these drugs. You could have a read through some of them and respond to any of the more recent posters if you think they might be able to help you further.

It would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You could copy and paste part of your introduction from here into your profile to save you typing it out again.

x

Hi Helen23

My journey isn’t quite the same but I thought I’d reply as I to understand the feeling of shock at being given such a diagnosis. My initial diagnosis was Grade II ER positive HER negative so fairly low grade my consultant said back in 2017 fast forward to November/December 2020 and I was experiencing back pain that had me screaming with pain.  We thought it was an old injury playing up....my GP arranged for an appointment with consultant who as i was leaving stopped me and said I think we should do a bone scan....this showed up hotspots which he wasn’t expecting to see....at this point I go into absolute meltdown thinking this was game over basically! Then I’d a CT scan which confirmed their suspicions that my back pain was actually cancer in the spine. Although treatable it’s not curable. All the consultants were stunned by this as we were too!  

i think I’m slightly better than I was as I kept fixating on how long have I got etc etc and then I remembered everyone is different and I’ve so much more I need to do!  We were met to be in Oz last December to see our daughter and that’s my aim to be healthy and fit enough to get there.

I hope my wee ramblings help I do tend to go off track a bit! Cx 

Hi Helen, i had breast cancer back in 2004 i wont go into detail you could if you want read my profile. It is a big shock to say the least i know. I have it in all the places you do and probably more but we carry on.I was diagnosed last year one week before lockdown and treatments were being stopped. I have been on chemo tablet form now for 9 months and still here to tell the tale. Yes you are correct for incurables like ourselves we will be on some form of chemo for ever, but new ones are coming out all the time and there are new trials for us to go on. We must try very hard not to give up, you will in time learn to enjoy yourself again although in a different way. Wishing you all the best x

Hi HERHoF92

Gosh so looking at the months this is a very recent diagnosis for you... I hope that the pain is really well controlled for you. My diagnosis was at the beginning of the year so a reasonable time to get used to the idea. Though having said that, it still hasn't really sunk in.... at all.

You are so right, everyone is different. We have to be very careful not to scare ourselves silly with other looking at other peoples stories and how long they have to go/ making comparisons - which I have tended to do.

What a great aim to get to Oz to see your daughter! I'm sure you'll do it.

Your ramblings did help , thank you its really good to hear from others, and your'e the first Ive heard from.

Hx

Hi Helen 

Thank you for your lovely response we seem to be on the same journey and I so mean to get to Oz! I’m just about to finish my first cycle of Palbociclib and it’s not been too rough. Mainly tiredness. 

I was only diagnosed in February and so highly medicated at that point I didn’t realise how serious everything was. Sadly I do now.  However, it’s onwards and upwards for us both. I’d like to add that I’m off much of the heavy duty drugs and try to get by with my trusty paracetamol. So that’s a huge plus for me again. Cx 

Hello Helen23,

I was diagnosed with secondary bone cancer at the beginning of February two years after a mastectomy. I am now into my second round of chemo on the same drugs as you are on and, so far, the side effects are manageable and quality of life is fine. I understand only too well that the diagnosis has been devastating but this treatment has proved to be very successful. We won’t be cured but the disease can be managed. Also, there are new treatments coming out all the time so I am looking at it as an ongoing acute disease rather than a fatal one. It must be difficult for you and your boys just now but hold on to the positive and maybe try not to look too far ahead. Very best wishes

Hi Helen, can I ask, during 2019 when you were getting these pain symptoms, did you have a mammogram and did it show as clear? Thanks, Abi

Hi Beario

Yes I did have a mammogram then, and all was good. Can I ask your reason for asking? Are you undergoing some sort of treatment at all?

Helen

Hi All, I was diagnosed two weeks ago with a very unexpected secondary breast cancer with mets on the lung. It was the persistent cough and a chest x ray that found it, Saw the oncologist yesterday and am going to be on the same regime as you. My oncologist was very reassuring that people do well on this treatment for a long time and that there are other treatments available now and more coming along all the time. I've screamed and cried for two weeks, but am now trying to hang on to his positive words.