Hi I was diagnosed with metastatic breastcancer ER positive in late January. I get injections every month for hormones and take a tablet everyday. I am on Letrozole, gosserelin and denosumab. I was just wondering how do people cope with the diagnosis and how long have you been dealing with it. I struggle some days to stay positive . I have 4 children my youngest is 12 and I would love to see her grow up. Thank you.
Gosh, a few hours ago I felt so down, hopeless and seriously thinking of not starting my treatment for stage 4 which is in my lungs and bones. I was so devastated and felt helpless and thought why bother pushing ahead with such a bad prognosis. After reading and re reading the many comments I feel so much more hopeful and a part of a group that understands. Some of you have many years of experience navigating this horrible disease and some were as sad and confused as me. Thank you to all of you. Each contribution helped enormously and I will try to remember that you can live with Metastatic Breast cancer and maybe not everyday you won't feel like you are thriving but there will be days when pushing through the fear and heartache will be worth it.
Thank you xx
I've just been diagnosed with stage 4 by accident. So strange, I feel really well. Catscan, Petscan and Bronchoscopy have confirmed the unthinkable. It would be so easy to accept if I felt unwell. It's in my lungs and bones and now a new cancer in my left breast now. I go for my first Oncologist meeting tomorrow. So many questions, so much uncertainty but the worse thing is I have such a huge sense that how can I be that sick if I feel so fit and well and happy. I'm aged 65.
Gerry2 I am sorry to see you have had a recent and significant diagnosis; it must have been quite a roller coaster. I am just jumping in to say welcome to the network and I hope your treatment discussion goes well. I can remember how surreal it felt knowing my life would soon change (with treatment) and having no sense of impairment.
Gerry2 I am so sorry to read of your diagnosis xx. It is a really tough call. Many of us 'look & feel well' at the time of diagnosis ... and if you are fit as well, it will help you as you talk to your Onc about what treatments will suit you.
With immunotherapy & other treatments available now - some Stage 4 cancers are almost being treated as a 'chronic condition' .... I have friends who are 8+ years into their diagnosis (some with minimal treatment) and we have members here who have passed the 10+ year mark.
Please read my post down the bottom of this thread ... consider joining the Private Mets group, where you can chat with others with the same diagnosis xx
take care & all the best with your appt tomorrow with your Onc. Consider recording it on your phone, as it is almost impossible to remember everything that has been said at the time xx
I did record the meeting which was very helpful. My oncologist was surprised but delighted as she said there is so much information and often useful bits of information gets lost as so much is covered.
Thank you for your excellent tip! xx
Hi akaye76 , Thank you for sharing so honestly - receiving a metastatic diagnosis is incredibly overwhelming, and it’s completely normal to have days where staying positive feels out of reach. 'Coping' looks different for everyone, but many find it helps to just take things one day at a time and allow space for all feelings - both the hopeful and the hard ones. You don’t have to be positive all the time; giving yourself permission to feel what you feel is part of the journey. Some people lean on support groups, mindfulness, journaling, or connecting with others who truly understand. This community is here for you whenever you need to talk, or even help you make a game plan for any challenging conversations about metatastic breast cancer you feel you want to have with your children.
Sending you warmth and strength - you’re not alone in this, we are all stonger together - please reach out to the helpline if you need anything at all 💜
Hi Akaye76
Sad and upset for all you are going through, it's a tough gig even without multiple responsibilities and feeling for your children. I also was diagnosed in January with metastatic breast cancer (lungs, liver, breastbone) also ER+ HER-and one of my points of positivity is I was able to choose to retire in June and now have greater liberty.
I picked up on your goals (staying positive, living to see your children grown) these are both realistic in these times and a reason to fight is an excellent thing. It's also ok to feel sad, frustrated, discouraged, afraid, devastated, angry - every and all emotional reaction. This group is a good place for that.
In coping with the diagnosis, I find that short term and medium term goals are helpful, like planning a meal out, at home 'spa' treatment (bubble bath and face mask), mini holiday with my husband (half day trip with fish and chips) and/or soft drink and a donut with grandchildren and adult children. Sometimes a pot of herbal tea plus a good book and ignoring the bathroom that needs cleaning feels like a good option! Short term goals are getting together with friends for a phone call or coffee, baking biscuits, exercising by walking around the block and currently, trying at home resistance exercises to improve physical strength (I'm 68, so this is increasingly important). Having little 'dates' with my grandies (limited to activities within my energy limits) and reaching out to do something small for someone else also helps. Sometimes telling the young person who serves me at the supermarket thank you, with a small compliment, brings a smile.
I do understand that this is harder with a growing family and so many responsibilities, one of my positives is having time to choose. Saying "no" to non essential things in favor of doing nothing also feels like a treat!
It's early days for us, and the journey, while not for the fainthearted, is worth making and brings some positives at times. Please keep sharing, your message alone brought me comfort to know I'm not alone.
PS my long term goal is to see my youngest grand child enter high school - she's in Reception.
Thank you very much for your kind reply. Your words brought me some peace. I am very hopeful that I will get to see my daughter grow up.. And I hope the same for you and your granddaughter. Wishing you all the very best xx
Hi akaye76 ... some great advice there from Cath62 xx.
Consider joining the Mets private group here, where your conversations are totally private - and you are chatting with others who are metastatic and 'get it':
Group: Living with metastatic breast cancer | BCNA Online Network
If you find yourself feeling sad, give our helpline a call on 1800 500 258 for a one-on-one personal chat. xx
Any cancer diagnosis is like a brick to the head .... and it takes time to 'come to terms with it' ..... and a Mets diagnosis really knocks the socks off you xx But there are support groups where you can get together with others, to help support each other ...
Re your young daughter (and your other kids if under 25 for Canteen) - there are various organisations (like Canteen and Camp Quality) where they give kids (who's parent has cancer) the chance to meet up with other kids in the same boat & just have fun together - or help with counselling etc, if needed.
Your hospital Social Worker should be able to point you to any local organisations who may also be able to help too.
Your Breast Care Nurse may also be able to help you with relevant organisations, too. xx
https://www.canteen.org.au/how-we-help
https://www.campquality.org.au/
take care & all the best xx
Hi akaye76, I found the first 6 months the hardest. I saw a psycholigist and joined a support group for advanced cancer like me. Many have breast cancer mets. These women gave me hope. Many living beyond 7 years and for the most part, well.
I dont think any of this is easy. We all have our moments. I cope best if I stay present, just focus on the very moment. Looking back just gets you depressed and worrying about the future and what ifs only causes anxiety.
This is a safe place to share and we all get it.
Thank you very much for your kind words. And thank you for your advice about the future. I really appreciate your response xxx
