Hi, I only just got my breast cancer diagnosis 1.5weeks ago and initially it was tentatively said to be Stage 3 due to being grapefruit sized and lymph node involvement. Then a couple of days ago after unrelated investigations it was discovered that there were mets in my vertebrae so I have been upgraded to stage 4. My cancer is HR+, HER2- and grade 3. Feeling completely overwhelmed and terrified for the future as I am a 40yr old single mum with 3 kiddos. I have started hormone blockers and will get a PET scan in a couple of days so we can get the full picture to be able to make an informed treatment plan. Anyone else in a similar position or further along and can provide some reassurance that it will be ok?

Thanks for the update @Rhubarb21 - that is great that the recent scan didn't show much progression ... As the meds kick in, it is all about managing it, as they know they can't heal it. THey are advancing with treatment options all the time! Specially now, with immunotherapy & other 'newer' treatments. One of my friends with multiple area mets says that they virtually consider it & treat it a 'chronic disease' now, rather than a 'terminal' one - cos as you & @Cath62 say - you don't necessarily 'look or feel' ill! Just keep doing whatever you love doing xx take care

I am SO sorry to see you joining us here @Rhubarb21 - the club that no-one wants to join :( It is a tough call, being diagnosed with Mets straight up - but the treatment these days is advancing in leaps & bounds and now that immunotherapy has been brought into the treatment as well for mets - there has been some astounding results recently, with Enhertu & other treatments. If your Oncologist doesn't mention it, ask them if Enhertu would be suitable for you? ;) Definitely join the Living with Mets group above - and continue replying to this thread, so that you have continuity of replies xx There IS life after a Mets diagnosis - and your medical team will be doing their best to give you the treatment that will benefit you the most xx. You should be assigned a Breast Care Nurse too - who will become your buddy & you can also ask her ANYTHING to do with your treatment and your physical and mental well being xxWishing you all the best with your ongoing scans & treatment. It is a big shock to you - so ask your GP to refer you to a counsellor if you feel overwhelmed xx I hope you have good family support & friends too, that will be able to help you with the kids too Click on this link, to take you to both series of Charlotte Tottman's podcasts on her own breast cancer diagnosis & treatment (Listen to Series 1 first, as that is following her own BC diagnosis path) ..... She is a specialist Breast Cancer Counsellor & was diagnosed about 5 years ago - she found that her own response to the diagnosis was totally different from what she 'thought it would be', given that she'd been advising others on their own diagnosis for years previously xx She chose a double mastectomy and stayed flat .... Her podcasts are REALLY easy to listen to & she will cover all the emotions that you are feeling ..... http://www.drcharlottetottman.com.au/my-podcast.htmlAlso, you may like to check out this post that has a lot of info on the forum (some off topic threads) and also some tick sheets down the bottom for you to 'self assess' yourself re your physical & mental health as you go thru your treatment etc xx. Sometimes it is easier to give them the ticked sheets, than to talk about it xxhttps://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latestAsk away on ANY questions that you have - there are NO silly questions Take care xx

So, thought I would update here and also thank everyone for their kindness. I have now had my PET scan and it was discovered that my entire spine, some ribs, shoulder blade and sternum all have mets. It has taken me a little while to process and move past the initial fear and everything that comes with all of this. My kids have been amazing, and while I know it is scary for them I make sure to let them know that I am not giving up and that even though it may seem small things are looking up with regards to treatments. My eldest is 16yrs old and so has his L's and is loving being my chauffeur driving me the hour each way to the cancer clinic. It helps him get his hours up and allows me to not have to drive for everything. Tonight I am having a bit of scanxiety as I have a brain MRI booked for tomorrow. The radiologist assures me that it is a routine test for getting a baseline image, but at the moment it is very daunting as each scan has just shown more extensive cancer and I am so scared they will come back and tell me that it is in my brain.On the positive the blockers alone so far have shrunk my breast mass from grapefruit sized to maybe large egg. So I am taking that as a win and a sign that with treatments I will be around for a while yet. My youngest kiddo is 10yrs so I would ideally like to at least see him get to adulthood. I have also now had 2 'mega dose' sessions of radiation, one on the ribs and one on the lower spine and pelvis. Feeling really optimistic about those as the rib one was last week and the rib that seems to have broken due to the cancer is not as painful.Sorry for the jumbled thoughts, still processing but wanted to update.

Just thought I would do an update. So we have now discovered that I have ‘innumerable’ mets in pelvis, spine, ribs, sternum, scapula and skull. Honestly I think that the skull ones scare me the most, even though the oncologist assures me that it doesn’t mean that the cancer will go to my brain any quicker than if it wasn’t in my skull. I am onto my second broken rib since being diagnosed so am on quite a lot of painkillers (for me at least). Dr has got me on letrozole, ribociclib, xgeva and zoladex. It is the strangest feeling being stage 4 from the start. While I know that I am ‘sick’ and I know that this will eventually kill me, I don’t feel sick at all. People keep telling me how good I look for someone who is essentially dying. My kids are still doing amazing, and we have so much support from friends and our community.I also had my 3mth scan and while there isn’t a lot of progress necessarily (due to some issues with the meds) there is also not a huge amount of progression and I will take that. There is hope, even when it seems scary.Here’s to sticking around for a while yet.

@Rhubarb21, I had not known of recent diagnoses, I am deeply sorry, if I have comment recklessly in anyway. I suppose people around you are caring, want to spend time with you and need your company.I am glad your kids are amazing, supportive and resilient- those are not some qualities you can find easily. <3

Newly diagnosed metastatic cancer

18 Replies

FiJane
Member
1 year ago
@Rhubarb21 that’s great news! Sending you hugs 🤗
cranky_granny
Member
1 year ago
@Rhubarb21 glad to hear your latest news.
Tri
Member
1 year ago
So happy to read your post, thank you for your uplifting news - sending you lots of virtual hugs 🌸🌻🩷 @Rhubarb21
Rhubarb21
Member
1 year ago
Just wanted to share more good news. When seeing my radiation oncologist yesterday she showed me where the bone was actually regrowing in some of my spinal mets. It was definitely the news that I needed, This is from my bone scan done just 2 days ago. Fingers crossed this continues and I get to have a while yet with my kiddos.
arpie
Member
1 year ago
Thanks for the update @Rhubarb21 - that is great that the recent scan didn't show much progression ...

As the meds kick in, it is all about managing it, as they know they can't heal it. THey are advancing with treatment options all the time! Specially now, with immunotherapy & other 'newer' treatments.

One of my friends with multiple area mets says that they virtually consider it & treat it a 'chronic disease' now, rather than a 'terminal' one - cos as you & @Cath62 say - you don't necessarily 'look or feel' ill!

Just keep doing whatever you love doing xx

take care
cranky_granny
Member
1 year ago
thanks for the update @Rhubarb21. My regime if treatment which included some targeted radiation on the bone mets took about 6 mths to slow my bone mets to now no changes at each scan. Onc did say with my age and response to treatment it will probably be something else that takes me out. Gave me the average of possibility up to 20 years. Without any other health issues not related to the mets
best of luck with the treatment working.
Oh yeah I get the same comment re looking well. My smart ass answer is thanks I try my best. Just wish my insides looked the same.
Cath62
Member
1 year ago
Thanks for your update @Rhubarb21. I get people saying to me i look good too. It's a common thing said when we have metastatic breast cancer. I guess people just don't really understand what it can be like for us. I say to those people, the real question to ask is ' Do you feel as good as you look?'

Mets is hard. I don't have as many bone mets as you but I have it in my liver too. One of the ladies in my support group has mets in so many of her bones and she has been metastatic now for 11 years. My oncologist says it doesn't matter where the mets are as long as treatment halts progression. That's what we want for as long as possible.

So pleased you have your kids support. None of us could manage without our nearest and dearest. One thing I did was to stop thinking I was dying. I started off like that when I was first diagnosed with mets. Then I thought that I am not dying (not yet). What I am doing is living with metastatic breast cancer and i am living well, as best I can and it makes life for me far more enjoyable. Keep enjoying life, keep doing everything you love and being with those you love.
Tri
Member
1 year ago
Hi @Rhubarb21 your update is incredible. Huge respect and big virtual hugs for everything you’re doing to take this completely challenging context on board and into your daily life. 🌸❤️
241023
Member
1 year ago
@Rhubarb21, I had not known of recent diagnoses, I am deeply sorry, if I have comment recklessly in anyway.
I suppose people around you are caring, want to spend time with you and need your company.
I am glad your kids are amazing, supportive and resilient- those are not some qualities you can find easily.
<3
Rhubarb21
Member
1 year ago
Just thought I would do an update.

So we have now discovered that I have ‘innumerable’ mets in pelvis, spine, ribs, sternum, scapula and skull. Honestly I think that the skull ones scare me the most, even though the oncologist assures me that it doesn’t mean that the cancer will go to my brain any quicker than if it wasn’t in my skull. I am onto my second broken rib since being diagnosed so am on quite a lot of painkillers (for me at least). Dr has got me on letrozole, ribociclib, xgeva and zoladex.
It is the strangest feeling being stage 4 from the start. While I know that I am ‘sick’ and I know that this will eventually kill me, I don’t feel sick at all. People keep telling me how good I look for someone who is essentially dying.
My kids are still doing amazing, and we have so much support from friends and our community.
I also had my 3mth scan and while there isn’t a lot of progress necessarily (due to some issues with the meds) there is also not a huge amount of progression and I will take that. There is hope, even when it seems scary.
Here’s to sticking around for a while yet.

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Newly diagnosed metastatic cancer

18 Replies

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