Hi,
I'm all very new to this being diagnosed only 7 wks ago with stage 4 metastatic breast cancer (triple positive) which has spread to my bones. I am 51 with 2 children. I had only had my first mammogram 18 mths previous which was clear. I felt unwell at work & went to hospital and they found it looking for something else. It has been such an overwhelming process. My family & friends have been amazing but am feeling so very alone.
Hi, I’m very new to all this and was wondering how you are going?
My 3 year mammogram and scan came back clear but my surgeon was a little concerned about pain on the site of my lumpectomy. She offered a cat scan but wasn’t too concerned. They found a small spot in my hilar node, then pet scan ordered. I also have one in substantial node, small lesions in my pelvis and arm, 2 small spots in my right breast (original in left breast) and 2 skin nodules on my collar bone and lower cheek, I’ve started on hormone blockers and AdK6/4 and will start bone injections one monthly. It’s a roller coaster as it’s difficult to see anyone with my questions. I’m with SCUH who are very good but can only talk to the oncologist once a month.
I hope to hear you are doing ok and that you’ve managed to work Metadtic cancer into your every day life. The tiredness is manageable but it’s hard to have hope some days
I would live to hear how you are going🌸
mel51 & glasskat .... how are you going? I hope your treatment is going well with few or no side effects. xx
Did you join the Mets Group? You'll get terrific support there, from wonderful ladies who know exactly what you are going thru. xx
I hope you are going as well as can be ... Spring is almost 'in the air' .... I can almost smell it (if/when the rain stops! Grrrr) I am SO looking forward to the warmer weather and being able to get out doing the outdoors things that I love doing. It is so important to keep doing the things that you love doing (indoors or outdoors ...)
We have a few threads on Art & Craft, gardening & other pursuits. (I am only a recent garden convert - but only for Desert Roses LOL.)
There are SO many of our members that are gifted with many skills - singers, poets, writers .... tell us what you enjoy getting up to in your 'favourite hobby zone'?? Do a search on here & see if any others here 'do it' .... if not - start a new thread & tell us about it!! 😀
Take care & all the best xx
Hi @ arpie - thanks for checking in. I am doing a lot better than I was 6 mths ago. I finished chemo end of June & my fatigue is definitely lifting. My hair is starting to grow & I have gone back to playing pickleball, but taking it slowly. I'm on my long term treatment now & am trying to adjust to my 'new' normal. I still have my **bleep**ty days but am definitely in a better head space.
Hi all
Not sure if those who are metastatic have joined the private group “ living with metastatic breast cancer “ but wanted to urge them to do so.
There have been huge leaps and bounds in treatment options for metastatic breast cancer in the past few years so there is a lot of hope.
The private group allows you to connect with others in the same boat in a supportive way.
Call the helpline if you have any issues.
Hi Mel, I'm also newly diagnosed and de novo with widespread bone metastasis. 😕 . It's such a shock, I just have a sore shoulder It doesn't matter how many times I tell myself I have stage 4 cancer, it isn't sinking in. Or it comes in waves of panic. Hopefully we can connect with other people through these forums so we don't feel so alone. I feel like no one is going to really understand unless they have faced the same diagnoses. Have you started treatment yet? Seen a specialist? My first appointment is in 10 days ( and counting) I have so many unknowns at this point.
Hoping you get lots of love and support and find coping mechanisms that work for you
Hi there I’m sorry to hear about your recent diagnosis - I’m also recently diagnosed with triple negative inflammatory breast cancer with stage 4 bony Mets in hip and neck of femur - I’m also adjusting to this new normal for me and my family/ friends - it’s turned my world upside down !!!
Hi glasskat,
I am so sorry to hear about your diagnosis. To be diagnosed with breast cancer + mets at the same time is so incredibly overwhelming. Your whole world just stops & it's impossible to process. I am 3 wks into treatment now & do feel better. But initially it was such a long waiting game of appointments, scans & tests. After my first week of treatment, my bone pain has already gone. I'm lucky to have a great network of friends & family. I hope you are getting lots of support too. I wish you all the best with your upcoming appointments & all the best with your treatment xx
So sorry to you’ve received a diagnosisglasskat I can imagine the shock you might be experiencing.
Hope the next few days are manageable as you wait to go through the diagnosis and next steps with your doctors. For me staying measured during the period of uncertainty was something I found very challenging but I bounced back once a plan was made with the treating oncologist and surgeon.
There will be a lot of folks here with a diagnosis similar to yours but in the meantime I’m jumping in to send a warm virtual message of support.
Hi
I am so sorry you have received a diagnosis.
I was diagnosed Triple Positive two years ago. In my case it was Early Breast cancer, it feels like Mets is another layer of challenge and it’s great you’ve been directed to BCNA’s Group.
Also consider the BCNA Triple Positive Group there are posts about the HER2 positive targeted treatments and different drugs and decision points.
https://onlinenetwork.bcna.org.au/group/triplepositivebreastcancer
1 year on after completing my active treatment I am grateful (and relieved) for the return of most of my energy and physicality.
If you have access to an oncology exercise rehabilitation treatment program I recommend it because exercise during treatment can be positive- different but very beneficial to wellbeing and confidence during chemo etc.
Please sing out with any burning questions.
So sorry to see you joining our select little group, mel51 xx That initial diagnosis shock really mucks with your brain - and to be diagnosed with Mets straight up, is a double whammy xx As Cath62 has said - there are so many more treatment options available now with the newer ones like Immunotherapy changing lives ..... it is almost being treated as a 'chronic' illness now. I was chatting with a good buddy last week, diagnosed with mets 6 years ago - and she said that her Onc had told her that, further down the track, she will most likely die 'with it' - but not 'FROM IT'! We have members here who are 10+ years into a Mets diagnosis & living full lives.
Definitely join the private Mets Group where you can chat about other people's treatments & diagnoses ... in total privacy.
I hope your kids are going OK and that you have lots of support around you too xx. You might like to listen to Charlotte Tottman's podcasts on her own Breast Cancer story ... she is a specialist BC Counsellor and her podcasts are very easy to listen to and full of good tips on coping and moving ahead xx
http://www.drcharlottetottman.com.au/my-podcast.html
Feel free to jump onto this thread that will fill you in on a lot of info on the forum - and show some other areas that you might also like to check out xx
A big welcome to all New Online Network Members ..... | Online Network
Take care & wishing you all the best
Hello! I am also newly diagnosed and in the.. special sub club. I’ve not told my family or friends. How can I join the private group please? I’m really pretty overwhelmed…
Hi SoloDogMum
I am so sorry to hear that you are going through this alone - having decided not to tell friends/ family. As this post is now 2 months old its possible that this has changed and you have let a select few know? When I told my 4 sons I told them I was not sure when to tell them. One of the boys, the youngest said " straight away" and the boys have been there for me and their partners ever since! Just to let you know that it might be helpful to let loved ones know what is happening.
Hi arpie,
Thanks for your reply. Yes, my breast care nurse actually said the same thing to me that they look at it like a chronic health condition now, so that's reassuring. And hearing about members that are 10+ yrs down the track is also very reassuring.
I feel very lucky that I have heaps of support from family & friends, but as previously said, as supportive as they are, they can never understand what you are going through. Thanks for the podcast advice, I have been listening & find it really helpful xx
It is very overwhelming at the start of this mets diagnosis. I think it took me 6 months to feel less overwhelmed and anxious. There is hope and lots of treatments available. Where are you located, maybe there is a support group to join. Take it slow, one day at a time. Join the private group. People here totally understand. It is lonely because people around you who don't have this disease can't possibly understand but that's ok. Hopefully you have support around you with family and friends.
Thanks Cath62, I'm such in the early stages, it's good to have reassurance from others who are further along & have processed it more. I'll ask the breast care nurse about a local support group.
Thanks Julez1958, will do that.
