Newly diagnosed metastatic cancer
Rhubarb21
Member Posts: 3 ✭
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?
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Welcome @Rhubarb21
Perhaps you could join the private group which is for those diagnosed with metastatic BC.
The ladies there will be quick to respond and to provide support as they know what you are going through.
If you add your general location to your profile you may find someone lives in your area and can assist with available services.
All the best.
I will add the link for you ......
https://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer
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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 xx
Wishing 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.html
Also, 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 xx
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest
Ask away on ANY questions that you have - there are NO silly questions
Take care xx2 -
Hi @Rhubarb21, I have that same pathology and I have mets to my spine and liver. I fractured my spine in January 2023 so that was the start of my mets. My original bc was in 2020 and I had surgery, chemo, radium and hormone blockers at that time.
I am.older than you but fit and active. It is very scary when you find out you have mets. I found the first 6 months absolutely terrifying but there is hope for sure.
I am currently on Fulvestrant injections every 28 days and I take Ribociclib tablets too. I get scans every 3 months. I had radium on my spine and that spot is not active now. My mets are also in my liver too.
What I have learnt is there is hope. There are many treatments available to prolong life and keep you healthy too. I still travel around in Australia and i am active most days. I do get fatigue. Trust your oncologist as they are amazing and so knowledgeable.
Take all the help you can get. I hope you have supportive family and friends. See a psychologist if you need to. I did and it helped. It takes a good 6 months to process this and realise your not dying and there is a long way to go. New treatments are coming and never give up. Feel free to reach out via the private message if you want to and join our mets group. There are some amazing ladies in the group and we really get it!
Breathe deeply, treat yourself and surround yourself with your favourite people ✨️. Best wishes to you.7 -
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.8 -
Hi @Rhubarb21, great your son is helping drive you to your appointments. The radium on bone mets really helped me and one bone met just died. So keep that hope going. My oncologist said it's not about where the mets are or how many but it's about whether treatment halts progression so if you have shrinkage or no new mets then everything is working for you.
One of the ladies in the support group i go to has it everywhere. Basically she joked it is easier to tell people where she doesn't have mets. She was diagnosed 11 years ago and still going strong.
There are many treatments now and more being researched. I kind of feel like we just need to keep being managed till more treatments are approved. The drugs approval process needs to speed up for us mets people. We don't have time to wait.
@Mez_BCNA can you raise this issue of slow TGA approval with the policy team. The TGA acted quickly during covid to approval drugs so why can't they review their approval process for drugs for people with MBC? If fact they should look at it for all cancer mets.
My mets journey so far has had some increases and decreases in mets from scans and same with blood markers too. Keep talking to your oncologist and stay the course. Eat well, exercise a bit and stay living in the present moment. It's a step at a time. Thank you for your update.3 -
Hi @Rhubarb21 sorry to hear you’ve joined the mets group. If you haven’t already joined the private group living with Metastatic Breast cancer group come aboard. At the bottom of this thread you should see a groups click on that then the above group usually comes up first just click join and someone will let you in. On there the topics relate to our struggles and successes. My Onc appointment is today and will come away with the referrals for scans etc. hoping for a break off my palbociclib for a bit. All the lesions at last appointment were stable.As my Oncologist said. There is lots of steps ahead if this regime stops working. Ive been 5 years with mets and still going. 3 years on this drug. The targeted rads on the bone lesions worked though not immediately.Every scan causes anxiety make sure the appointments between the scans and getting the results aren’t too long. Keep us in the loop.Make the most of what’s available. I have a dedicated McGrath Nurse who specialises in Metastatic disease
hope you have one0 -
Hi @Rhubarb21 ... great that your son has become your chauffeur! It sounds like you are living in a regional area if you have to drive 1hr to your treatment? All states have have a 'Travel Assistance' scheme to help offset travel costs & you may qualify for it. What state are you in? We also have a Private Group for those living regional/rural, and we try to keep all the info up to date.
https://onlinenetwork.bcna.org.au/group/28-living-in-regional-rural-and-remote-areas
Here is a link to the most recent info on all states Travel Schemes - some cover taxi fares too, if private cars aren't available ....
https://www.ruralhealth.org.au/sites/default/files/publications/pats-fact-sheet-and-guide-2024.pdf
All the best for your MRI today - the more scans you have, the better - they get the whole picture as of 'today' and can compare any others to them as you go thru your treatments xx
As the girls have said - the treatments are getting better & better and more & more treatments (like Immunotherapy) being brought into the picture too, with certain Mets are having wonderful remission results.
Take care, wishing you all the best xx0 -
@Rhubarb21, Thank you for hanging there, it means great to some whom going through similar ( it is never same, some try to categorise somehow) then you are still here.
I was not so green past months and not so kind myself. You worry about your loved ones and others but you are number one. Be strong, I send my love.0 -
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.9 -
@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.
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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. 🌸❤️1
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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.4 -
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.2 -
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
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