Why not join the Living with metastatic private group? Access group via the link here.
Finding a new kind of normal
Options
Tennille
Member Posts: 174 ✭
First diagnosed in 2011, 35 years of age and 32 weeks pregnant. Right sided mastectomy, level 2 clearance 3/26 nodes. Chemo 6 months, radio plus Tamoxifen. Switched to Zolodex and Aromasin 2016. Original tumour was 3cm ER+ PR+ HER2- Stage 2B, Grade 3. Four weeks ago after having an abdominal ultrasound for gallstones mets were found in my liver and bones. Total shock as I haven't experienced any real pain and LFT's all normal. Currently awaiting approval for a clinical trial for Palbociclib and have started on Denosumab and staying on Aromasin for the time being. Onco continues to tell me treatable but not curable. I am a hugely positive person but I am still struggling to get my head around all of this. I am a single mum of 12 and don't know how to live my new kind of normal. Where do I even begin?
0
Comments
-
I can't even imagine how hard it is for you with this news but just wanted to let you know we are here and listening.
I hope you get on that clinical trial soon and you respond really well to your new regime.
Kath x
1 -
Hi Tennille,
Sitting here thinking about what I can say.
I want to acknowledge that even as a positive person, the struggle to get your head around your situation is real and personal.
Just also want to repeat what primek has said.1 -
Hi Tennile, so sorry you find yourself in this situation...i too had similar experience in that i was 15 years c,earance from first instance of B/C only to have mets diagnosed in spine, liver and recently abdominal wall...i too had very little pain leading up to diagnosis which is now stage four and supposidly incuable. I too am on denosumab (xgeva) monthly injection, and was on femera, switched to aromsin and actually now have 6 months of chemo due to breathing issues and mets on the liver..... i struggle with the 'incuable' bit but I'm pretty strong minded which i think is half the battle with a positive attitude.
So hang in there, keep strong and positive and have good people behind you....and just know that sometimes it is a bit daunting and we have to pick ourselves up and keep fighging tne fight!2 -
Tennille, I'm so sorry you are in this situation. My thoughts are with you.
Lisa x1 -
Hi @Tennille, our Hope & Hurdles resource is designed for people who have been diagnosed with metastatic breast cancer. It has a lot of useful information that you can explore when you're ready. You can order it online here or call us at 1800 500 258.
3 -
What we all secretly dread that supposedly cured of breast cancer, sneaks in to somewhere else unknown to you. At least though it is now known to you and your team of specialists can deal with it as it unfolds. My dad has the demosaub injections every month. He was on pain patches but decided he prefers pills to patches. His normal is resting up as much as possible and picking his day and time to do things when he is having a good day. Other days aren't so great and it gets him down a bit but he is always ready and schemes up plans of what to do on his good days. Here's hoping you have lots and lots of 'good' days.
1 -
Hi Tennille,
Sorry to hear about your diagnosis. I was diagnosed with mets in my bones & liver in 2016. I spent the next few months in tears. I was mourning the loss of my old life. But life continues. I have two young kids that need there mum around for a few more years. So now I live life to the fullest & take nothing for granted. Cancer sucks!!
Ange5 -
Hi Tennille
Im not sure what to say but so sorry to read what you are going through. Take care and be kind to yourself.
Hugs
Deb1 -
Ange...How are you going with treatment? Especially with liver mets? I worry more about my liver than bones.0
-
Hi Tennille,
I am doing ok with my treatment for the moment. I am on Faslodex injections once a month & Xgeva denosumab injections for my bones once every 6 weeks. My tumour markers have come down since starting the Faslodex 6 months ago & my cancer is stable. I hope it stays that way for a long long time! What are you on?
Ange1 -
Hi Ang
I am currently on Denosumab every 28 days, Zolodex and Aromasin as I have only just been diagnosed. Onco wants me on a clinical trial but it takes time so I worry about my tumours growing in the meantime especially in my liver.0 -
WTF !! After reading your post I feel I have no idea what to say. I was always under the impression you would have some idea if you have a recurrence, I saw my oncol on Monday, my bloods were all fine, tumor markers all fine etched was happy with me and didn't want to send me for any scans etc and I have the osteo type pain from the menopause caused from the chemo, but am now shit scared its more than that after reading what you wrote, I feel for you Tennille, and I hope you get the trial meds. I think we all struggle with the new normal, but you my love have to stay strong and positive you have a team around you that will help you through it and I cant imagine what its like but hang in there lovey we are all here for you. Margie
2 -
Tennille, my heart goes out to you, I can't imagine how you are feeling. I had a recurrence at 4yrs and currently 2yrs clear. @onemargie that's the tough part there are no ideas that alert you, my Oncologist told me if I have any unusual pain that doesnt subside for a period of time to let him know. That's it! I had my Oncologist checkup last week, I was taken off Arimidex and put on Aromasin due to side effects. I feel GREAT! exercising everyday, saw a Naturopath, got myself back on track and changed my diet. I have NEVER felt better, lost 2kg and counting. I ask can I stretch to a yearly checkup...NO!!! I had an aggressive Cancer in 2015, Cancer is sneaky he says...WTF!!!! left feeling upset...but getting back onto things. I know its their job, to be fully upfront and I cant fault him, but disappointed as far as Im concerned Im doing great, moving on and never looking back...refuse to worry about it...just live I say...we dont know the future for this or anything else when you think about it.
Tennille, the biggest of hugs, and strength to face each step as you go, hold strong and nurture you every single step of the way. Melinda xo1 -
Hi Tennille, I agree it's very hard to find a new kind of normal.4 months after my diagnosis I'm still trying to work it out. I found a lump in the breast and then they found mets in my liver so it was a huge shock for me to go from very curable to here. I'm a single parent to my 6 year old son so I just try and put one foot after another and keep going and hope for some great treatment results and hope for some new drug breakthroughs. Good luck with getting on that trial soon.
4
