Forum Discussion
Can not believe it.
Shock, denial, anger - cant imagine how I can move towards acceptance.
Newly Dx. Initially was stage 2, then told stage 3 and now looking at stage 4 with lung mets. What the! This roller coaster is insane and I want to get off.
Found a lump 8 weeks ago, took a month to get into my rural GP, another 2 week wait for scans and a further possible month wait after this for biopsy (apparently). So instead spent a fortune flying myself to Sydney to the one stop shop at Sydney Breast clinic (they were amazing) scans, biopsies, pathology all on the same day with lovely nurses, surgeons and Breast GPs to consult with as well. Got the bad news of lymph node involvement that day (what a horrible trip home finding trains and sitting in the airport alone with this news).
4 days later with core biopsy results apparently better news of - Gd 1 slow growing highly hormone receptive and HER 2-ve Ca. Staging scans the next week, another week to get into the breast surgeon. Feeling good and starting to get my head around Mastectomy and some Hormone therapy and maybe some radiotherapy.
Then the bad starts flowing again not stage 2 now looking at stage 3 with potential Mets in lungs - What!. So Surreal when one is so fit and healthy. Now another 2 weeks wait and long distance travel to have more invasive investigations to confirm or discount this scary stage 4 Dx. On top of this had to go cold turkey off my HRT so everything aches, I cant sleep, I cant breath and the emotions are all over the shop and the anxiety is making this all 10x worse. Meanwhile I am trying to continue work and family life as normal!?
So unfair when I have finally got to a place in my life, happy in my newly set up little business, kids almost off doing there own thing and life was finally looking like I could start having some me time. I did everything right - regular and recent mammograms and health checks all good, but somehow this little nasty thing just some how snuck under the radar. Well damn! Deb
Newly Dx. Initially was stage 2, then told stage 3 and now looking at stage 4 with lung mets. What the! This roller coaster is insane and I want to get off.
Found a lump 8 weeks ago, took a month to get into my rural GP, another 2 week wait for scans and a further possible month wait after this for biopsy (apparently). So instead spent a fortune flying myself to Sydney to the one stop shop at Sydney Breast clinic (they were amazing) scans, biopsies, pathology all on the same day with lovely nurses, surgeons and Breast GPs to consult with as well. Got the bad news of lymph node involvement that day (what a horrible trip home finding trains and sitting in the airport alone with this news).
4 days later with core biopsy results apparently better news of - Gd 1 slow growing highly hormone receptive and HER 2-ve Ca. Staging scans the next week, another week to get into the breast surgeon. Feeling good and starting to get my head around Mastectomy and some Hormone therapy and maybe some radiotherapy.
Then the bad starts flowing again not stage 2 now looking at stage 3 with potential Mets in lungs - What!. So Surreal when one is so fit and healthy. Now another 2 weeks wait and long distance travel to have more invasive investigations to confirm or discount this scary stage 4 Dx. On top of this had to go cold turkey off my HRT so everything aches, I cant sleep, I cant breath and the emotions are all over the shop and the anxiety is making this all 10x worse. Meanwhile I am trying to continue work and family life as normal!?
So unfair when I have finally got to a place in my life, happy in my newly set up little business, kids almost off doing there own thing and life was finally looking like I could start having some me time. I did everything right - regular and recent mammograms and health checks all good, but somehow this little nasty thing just some how snuck under the radar. Well damn! Deb
23 Replies
- Hello @Denhamia and @franrup
Catching up with both your posts now - I too am on both Letrozole and Ribo.
Taking a break from Ribo at the moment as my liver function tests were crazy high. It seems that this is a side effect that can occur - and yep, it occurred for me. Just when I was starting to feel a little more OK, and then bam. Previously ribo had felt really heavy to me, I really looked forward to the 7 days off each cycle. This time i'm feeling really wiped, with a bunch of other side effects from liver stress.
Having a liver ultrasound next week to be sure it is only the meds. Tests tests and more tests.
Thank you for sharing the info re: dark chocolate and neutrophils.
Sending you both all the very best wishes. - @Denhamia I asked my oncologist about the dark chocolate hack for neutrophils, he hadn't heard of it but encouraged me to try before my next blood test. I will have some with my breakfast next week :D
- Thank you Frances. I have responded to your Facebook request. Will PM you as well. Sending hugs. We have had a similar journey
- Hello Deb,
My story is very similar to yours and i feel the way you feel, shocked and angry. We did nothing wrong!!Its not our fault!!
I went for my regular two yearly mammogram end of July 2024 (on time). I was called back after bioposy and told chemo and breast surgery. After PET scan and on my way to chemo, i was called in by oncologist and told change of plan due to spread in bone. WOW!!!!!! i am a super organised teacher and do everything on time and all preventative check ups on time, just like you. How can this be? i also stopped the HRT that i commenced four months prior and probably sped up my ER+ PR+ cancer, this is another thing I feel guilty about.
Its been a few weeks waiting for bone biopsy results and blood results. This week I finally commence Letrozole then CDK4/6. I am frightened of side effects but i will not give up. I will fight. You can too!!!
You responded to my post on denovo facebook group, i live in Sydney and if ever you need to make contact or meet up for support please do via text or messenger - SO good to hear that the Lindt 85% dark chocolate helps keep the neutrohils up! @Denhamia Woohoo!! You are doing so well with all your interactions - and keeping busy being back at work again, keeps your mind busy - as this disease mucks with our brain I reckon, even more than our body! So keeping BUSY, is a great way of preventing brain overload xx. Keep doing what you are doing & all the best as you continue your treatment, Deb xx. Have you joined the private Mets Group? Always good to chat with others going thru the same thing xx
take care - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5835384/#:~:text=A%20significant%20increase%20of%20both,parameters%20of%20WBC%20remained%20unmodified.
It seemed to work for me. My white cell count was a little low but neutrophils were perfect. So happy to keep testing the theory. 🤭 - @Denhamia so sorry for your diagnosis but you have lots of support here.
You caught my interest with your latest update, does lindt 85% dark chocolate help with neutrophil levels? Wouldn't that be great if it does... chocolate becoming an essential food group :) - Hi all. I am just doing a little update. More for myself but one day hope that I can look back at this and see where I have been.
I am now 6 weeks since my official Dx of Stage 4 Breast cancer (1st Aug) and 4 months since I found a pesky lump in my breast. I have been on Letrozole for 2 months now and started Ribociclib 5 weeks ago.
I have learnt a lot in these last few months. Forums, online groups, podcasts etc have helped me feel like I can now be a little more in control of what happens from now. I no longer feel like I am stepping into this big black hole. Actually its quite bright down here in the underworld of metastatic breast disease.
I am now in a better place, but it has taken some work and there is still a long way to go. I am currently having a 2 week break from Ribociclib before I start my next cycle and must say I am feeling really good. I have found a lovely psychologist, am back to getting my exercise hours up (Yoga to help me breathe, zumba for a laugh, jogging to burn off those anxiety attacks and walking because I love it), I am practicing mindfulness and eating well. I am also packing away the lindt 85% chocolate to help my neutrophils (its amazing what you discover in these online groups) must have worked because my bloods were good first cycle (just need a longer break due to a bout of migraines grrr)
I am still working (I have my own Allied Health business) and have found this to be really helpful in distracting me and despite some side effects from my medication I feel like I can cope really well. Maybe I am in denial, I dont really know whats around the corner, but right now I feel really good and ready to take on this little hiccup in my life. Heres to positive thinking. Deb - Hoping you have some answers today after seeing your Onc @Denhamia xx. Great that you are being thoroughly investigated xx
Take care, we're all thinking of you as you go thru the steps to a treatment plan xx - Hi @Denhamia,
So sorry to hear of your diagnosis and the medical tests you have had to endure so far. You sound like a strong woman who is going to knock this BC on the head and do all you can to keep it at bay.
Take each day as it comes and allow yourself to rest and have a good cry when you need to, let family take over the day to day as much as you can. I am sending you virtual hugs and so many best wishes for you treatment ahead.
Hugs xxx
