Newly diagnosed and has spread to bones and liver
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Jano
Member Posts: 2 ✭
I literally found out 2 weeks ago that I have breast cancer. I just got back from an appointment today after all my scans to be told that it’s spread to my liver and bones. I’m absolutely shocked and terrified. I’m HER positive. I’m having a PET scan done to confirm about bones and liver and told surgery is not an option for me. Anyone else in the Sam boat as me? Any storie of hope out there? I’m only 45 and have 3 young kids. I don’t want to die!
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Comments
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Hi @Jano
There is a private group on here Living With Metastatic Breast Cancer you can ask to join.
This will al be a huge emotional roller coaster for you so I repeat what my GP told me when I was diagnosed with breast cancer - take someone trusted to all the early important medical appointments as you won’t take everything in .
Breast cancer treatment has come a long way in recent years and new discoveries and clinical trials are happening all the time .
There are ladies who have lived a long time with stage 4 breast cancer and HER 2 is a type that has a number of possible “ lines” of treatment.
There are lots of resources on here and don’t hesitate to call the helpline.
Also , consider getting some counselling from someone who specialises in cancer related distress - your medical team should be able to refer you .
Take deep breaths and accept the many offers of help that will come .
Take care 🌺4 -
@Jano, what a shock. It's just horrible and unfortunately it does take alot to manage all of this particular these first few weeks and months.
Do you have an oncologist yet? Also hopefully you will get a breast care nurse or be able to contact a McGarth nurse. It depends if you are public or private.
Your oncologist will know how to treat your type of cancer. They will come up with a plan.
I take my husband to all my appointments along with a list of questions and a notebook. I have bones and liver too and currently one and a half yrs from finding it in the bone. While I have a different type there are many treatments and many people manage well from these.
There is a great podcast by Dr Charlotte Tottenham and sessions there for metastatic cancer. You can search for them in this forum.
You might consider counselling at some stage too. It can all be so overwhelming to begin with and it is normal to be terrified especially when there is no plan yet.
Try to keep busy. It's good you found your way here as everyone is very supportive. Join the private metastatic group too.
Stay away from Google. Lots of what is there is out of date and stats are old and don't really cater for all the new treatments.
You will have to consider whether you tell people. That's really up to you, but give yourself time to process it yourself first. There is information on the bcna website about telling family and friends.
It's one day at a time, get a little exercise if you can, eat fresh fruit and vegetables and do lots of deep breathing. It's going to be ok and you can do this.
I hope your next appointment goes well and you get a treatment plan soon. Please update us and ask any questions as nothing is tabu here. Best wishes ❤️6 -
Thank you to those that have responded. Your hope and encouragement means a lot 🥹3
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Oh @Jano I’m so, so sorry you’re going through this. I’m just new to this journey too, but still awaiting appt with surgeon, scans, etc. so I don’t have anything useful to tell you sorry. Just sending you the biggest virtual hugs. Maybe when you have free time, talk to your McGrath nurse or one of your other amazing nurses about your situation & maybe some counselling?Gosh, what a terrible shock, hoping your nearest & dearest can step up & support you at this time xoxo0
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@Jano
I echo the sentiments above. The first few weeks are crazy, there is so much to get your head around. The waiting is interminable, but as noted above, take someone with you to your appointments. I continue to take notes and add them to my diary.
I have found so much information, understanding and like minded souls who are also experiencing their own 'journey' on this forum. It continues to be a safe and understanding place to be heard.
Day at a time. Sending love,
Kelly2 -
@Jano I have Her2 + in my bones. I met a lady in hospital who had been on the same line of treatment for seventeen years and was still going strong. I was diagnosed with Mets nearly two years ago and the treatment is holding well. Don’t give up hope. Her2+ has lots of treatment options. I was treated with Paclitaxel first to kill as many of the little blighters as possible, followed by Herceptin and Perjeta to hold them at bay. I also have Zoledronic acid infusion once a month to strengthen my bones so the cancer has trouble attacking them. Sending big hugs4
