Best Of
New here...my story so far
Hello,
I’m new the group and haven’t shared my story yet. It’s taken me a little while to be able to read some of your stories and not have ‘freak out’ moments. Thank you to all of you for sharing your stories. It is important to see the full gamut of what is happening and what is to come. In my initial moments I was overwhelmed reading here because I was so scared every time I read and got caught up in thinking if it would happen to me too. So I selfishly took myself away from reading and gave myself time.
I was diagnosed with EBC (early breast cancer) in August after a Breastscreen appointment that picked it up. I have a fibroademona that was detected and checked when I was in my 20-30s so I fully expected that would come up in scans. In fact, I had noted a lump in my breast and had managed to convince myself that it was just the fibroadenoma that had grown.
It’s amazing how we can easily convince ourselves isn’t it? Not quite delusion, not quite outright denial but I did have a few things going on at the time. I lost my job of over 20 years, Covid shut down the world and just when I was finding balance and working again I fell down some stairs and broke my leg. So for two years, I let other things take priority over having my Breastscreen checkup. I’m one of those cautionary tales and I’ve had to give myself grace and not blame myself too much over it and think on the ‘what ifs’. If I keep on the ‘what if’ I will just go crazy and overwhelmed emotionally and I have to get on with it. Decisions have to be made and now knowing what I know, I can’t wait any longer.
Here is where I tell you all that this isn’t my first time with cancer. In 2010 I had surgery and radiation for a liposarcoma in my arm. I was finally cleared and cancer free by 2018/9. So I’ve had a few years of not thinking about it except when I see my scars. To say that I am scared is a huge understatement but I’m a planner and practical person mostly so I cope by finding solutions. I don’t know what the stats are on survival rates for my situation, it’s one of the questions I haven’t asked yet. Partly because I’ve gone into solution mode and partly because I am just that bit too scared I guess.
My EBC journey so far has been all about finding a surgeon which I was lucky enough to be able to do from my specialist physiotherapist. I’d been seeing that physiotherapist for my arm and knew she also worked with many women with breast cancer. She referred me to my cancer surgeon. The decision to have surgery was an easy one after the sarcoma I knew it was necessary. Having the choice of breast saving surgery and reconstruction is a blessing. I chose to have my other breast symmetrised at the same time. To my thinking, if I was going for surgery I preferred to do it all at the same time.
My surgery was 8 October so I am now 2 weeks post surgery this week and healing amazingly well. I’m grateful that my body heals so well. I am also grateful that I was able to read up on tips on the BCNA site. I chose to go private so that I could choose my surgeons, both of whom are excellent in their fields and have been wonderful.
So what are my numbers? My EBC lump was 37mm Grade 3 invasive carcinoma, ER and PR 75% 3+ positive, HER2 negative with clear surgery margins. However, 2 of 3 lymph nodes showed metastasis with largest tumor deposit 22mm. That is the current concern and so I’m due to have a PET body scan this week and consultation with a radiologist and oncologist.
My surgeon tells me that she wanted more information before deciding my radiation protocol and further treatment. I know I will also have hormone suppression treatment but am not there yet. I am thankful that the research on breast cancers is so extensive that treatment protocols are updated often. My surgeon tells me that previous protocol for lymph node involvement would have meant instant removal of all lymph nodes. Whilst I am grateful I may not lose all of my lymph nodes and that I may have options, a part of me is also really sad and scared knowing that the reason there is so much improvement in treatment is because there are so many women that have had to go through this before me.
That’s me, my story so far. I was brief though wordy. I will continue to read and share where I can, you may have noticed that I struggle with sleeping 😊 Sad to be here, grateful to have your support.
Insulting and Judgmental Comments
I have been undergoing abdominal ultrasounds to try and figure out the problems I am having with my period.
The ultrasound people keep referring to the scar on my belly as a "tummy tuck". I've even been asked "why have you had a tummy tuck?"
I have a lot of scars on my body. I am proud of every one of them. They are proof of all the crap I have been through with Hodgkin's lymphoma and breast cancer. None of these scars attract the same judgment and comments as the one on my belly.
I have not had a tummy tuck! I had a bilateral skin sparing mastectomy and DIEP flap reconstruction! I was in surgery for 9 hours! I was in hospital for 7 days! I was off work for 10 weeks! I chose to undergo this surgery to remove breast cancer and reduce the risk of recurrence and death!!!!!! I was so SCARED going into that surgery!!
This was no FUCKING tummy tuck!!!!!!!!!!!!!!!!!!!!!!!
Incurable breast cancer numbers almost triple previous estimates. World first data
After 25 years of advocacy by BCNA, people with metastatic breast cancer (MBC) have finally been counted — at least in New South Wales.
In a data breakthrough that far surpasses previous estimates, the Cancer Institute NSW has identified there are 7900 (7850 women and 50 men) living with MBC in NSW alone.
This world-first announcement means people living with MBC are now visible in NSW, ensuring their needs are no longer overlooked.
Knowing how many people are living with MBC means we can plan a healthcare system, policy and services. This announcement will pave the way for all cancers to be counted and is a model that can be rolled out nationally and internationally.
To help ensure everyone is counted contact your state Health Minister and ask them to fast track the work of NSW in your state or territory.
For more information about the announcement, you can read our latest media release via the link Incurable breast cancer numbers almost triple estimates (bcna.org.au)
If you need our help?
We recognise the emotional weight of today's announcement on those affected by breast cancer. BCNA is here to provide support and resources to help you navigate through any fears or anxieties you may be experiencing. Please call our Helpline on 1800 500 258 if you need support.
Re: Newly diagnosed metastatic cancer
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.
Newly diagnosed metastatic cancer
Re: Stage 1 breast cancer
I am still recovering from a lumpectomy I am starting to heel,feeling better each day waiting for radiation therapy I had high grade DCIS
Breast cancer
16/10 24 I'm having second thoughts not to do chemotherapy I'm so scared..and radiotherapy..also hormone pills
Re: Breast cancer
Hi Sawsan, I finished 5 months of chemo and 3 weeks of radiation at the end of August this year. You can click on my profile to see more information about my type of breast cancer and treatment. What I want to share with you is that I wasn’t scared of the treatment at all. What I was, and still am scared of, is cancer itself. That’s why I accepted everything recommended by my medical team, who were incredibly supportive throughout the process.
I’ve now been on Letrozole for 2 months with no major side effects so far. The way I’ve handled all of this is by focusing on leaving it behind, taking care of myself, and staying informed. And of course, catching up with this network and the lovely people who were so supportive in sharing their experiences.
I also used the booklet to get advice on managing side effects, and it was a big help. Here is the link: Understanding Chemotherapy (cancercouncil.com.au)
When you focus on your treatment and well-being, you won’t have much time to feel scared. I can barely remember the side effects of chemo, including a few allergic reactions. Everything was so well managed by my medical team that I had full trust in them from the beginning.
Take care! Very soon, this will be behind you. All the best with your treatment. Do not forget to share any concerns with this network. which has been my best friend since my diagnoses last year.