Forum Discussion
Finding a new kind of normal
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?
17 Replies
- Tennille said: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?
Hi Tennille,
Firstly sorry to hear about your recent mets diagnosis. I was diagnosed with liver mets 5yrs ago and original diagnosis was in 2002 so 15yrs ago now.
That feeling of shock and huge sense of doom and gloom shall lift give it time its such a huge shock and adjustment to your way of life and threat of living. It took me about 18mths to finally see through that huge shock and for that cloud of doom to start to dissipate, I was also seeing a psychologist once a week to help even then it was hard I would just break down and cry every time I left the house wondering how the world would look like after I was gone. I can't make the pain go away wish it were that easy, but the best advice I was given was firstly to give it time and secondly break down you weeks into days 24hr blocks if its easier to cope just focus on each day as it comes and try and get thru each day, then shift your focus to aiming to get thru a week and so on and so on.
know that what you are feeling right now is completely normal and don't be afriad to ask for help if need be
all the best xx - Hi Tennille,
I really wish I could reach through the screen and give you a big kind, caring & understanding hug. I hear & feel every word you said! I have been on the mets rollercoaster since 2013 & found out yesterday I have to change from Abraxane chemo due to new tumours/tumours increased in size & add in some head radiation too. Stay strong, it's okay we have moments but we stay strong & stay positive & jump the hurdles thrown at us. This is such a gorgeous group of people that provide such support. Love and hugs to you x 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.
- 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 xo - 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 :)
- 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. - 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?
Ange - Ange...How are you going with treatment? Especially with liver mets? I worry more about my liver than bones.
- 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
Deb - 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!!
Ange
