Overwhelmed and lost
batshan
Member Posts: 1 ✭
Hey everyone I'm Shannon, I just turned 28 and recently was diagnosed with breast cancer. I lost my mother to cancer when I was 17 after a 7 year battle that started as breat cancer. So everything about this diagnosis has truly shaken me. Our family does carry the bracca 1 mutation. I was diagnosed when I first noticed my nipple changing and was very suspicious. That's when I found the lump. Everything since then had been full throttle and I don't feel like I'm dealing with any of it. From finding the lump it went to gp exam a week later, rushed for an ultrasound that day, to my results appointment 4 days later where I was greated by a very frantic doctor telling me I have two malignant tumours that must be removed immediately. The next 10 minutes was my doctor on the phone to the breast surgeon in my area demanding I am seen immediately, followed by him telling me I must demand a double mastectomy and refuse to back down. That was a little over a week ago and today I received a letter of my surgery consultantion on Monday. I feel so overwhelmed by everything. I feel like I have no idea what's actually going on or how to process any of this when I don't even have any information. I'm trying to prepare a list of questions to ask my surgeon on Monday but I don't even know what I need to ask? Google is proving horrifying when trying to find information about all of this so I thought maybe this would be a good place to start. I know I'm truly not alone in this but it's so hard no to feel that way right now which I guess is fairly common. So I'm wondering, does anyone have any advice? Advice on anything really. How to prepare, what to expect, how to start processing this. I don't even know what's in store after surgery. Do they run test? Will there be more treatments? I really just feel so lost and confused about everything that's going on and would really appreciate some words of wisdom from some lovely souls who know what I'm feeling right now.
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Comments
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Hi Shannon. It is hard to prepare yourself for the first appointment with the breast surgeon. Try to focus on what the breast surgeon is telling you and ask questions. No question is silly in such a situation.
Not sure if you have heard of McGrath nurses. Their support is so important, especially at the beginning of this journey that none of us wanted. Here is the link to find a McGrath nurse in your area: Find a Nurse - McGrath Foundation. Just call them and ask for support. Without them and this network, many of us would not be able to navigate through the treatment.
There are many resources on this platform that helped me a lot to understand my diagnosis, especially the podcasts from Dr. Charlotte Tottman on Podcasts (bcna.org.au) I avoided Google. I spent hours on this network, and I would not have been able to go through the treatment (surgery, chemo, and in two weeks, radiation) without support from this network. All the best with your journey and stay connected.
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Hi Batshan, my heart goes out to you- you are experiencing what many of us have at the start of this journey. Please consider taking someone with you to your appointments as they may pick up things you may have missed from being overwhelmed. I was tested positive for BRCA 2, and, speaking from experience, the medical team do not hang around when you have been diagnosed with a familial cancer. When you see your surgeon, ask them to put you in contact with a McGrath Breast Care Nurse and tap into them for advice. Once you see your surgeon, they will advise you on the next steps they think is suitable based on the biopsy samples taken ..but remember you have the final say. The surgeon should also put you in contact with the oncologists who will be advising you on suggested treatment outside the surgeons expertise..this may include treatment before surgery or treatment of various types after surgery. Perhaps to late, but try not to reference Google..this site has more realistic and current information plus lots of lovely people who can share tips with you on how to approach different aspects of your treatment. Don't be afraid to reach out! ..Thinking of you!4
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Hi Batshan, I too used Dr Google and scared myself silly! . Find your McGrath breast cares nurse. They are such a wealth of knowledge. I spoke with mine religiously about anything and everything. The nurses were kind and very patient.
This website was my saviour going through surgery to radio therapy, lymphedema to hormone blockers, the lot! There's is a wealth of information here. The ladies that you meet here are so very supportive too.
Write down every question. I walked in to all my appointments with a notepad and pen... and a good friend to hold my hand.
Thinking of you x4 -
@batshan
It's certainly overwhelming!
Links to good info!
https://www.bcna.org.au/recently-diagnosed/
The link above will guide you and give you the opportunity to search the BCNA Website
https://www.bcna.org.au/resource-hub/articles/types-of-surgery/
https://www.bcna.org.au/resource-hub/articles/breast-reconstruction/
And of course the BCNA Helpline
https://www.bcna.org.au/helpline/
Best wishes
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Hi @batshan
It’s overwhelming receiving such a diagnosis especially so young and having lost your mother to this shitty disease.
As hard as it might be , stay away from “ Dr Google”.
When I as diagnosed I asked my breast cancer surgeon what I should be reading - he said to stick to official sources and not to randomly google.
This website ( and forum ) is a wealth of information, and all the ladies in here “ get it” in a way no one else can.
I too had a double mastectomy ( although I am older and didn’t have the BRCA gene).
The first priority is survival but it is worth asking if you can keep your options open for reconstruction if that is the route you want to go down .
Sending you virtual hugs.🌺1 -
Hi there @batshan. Like everyone has said GOOGLING IS A BIG NO NO it leads you down a rabbit hole of junk
the are a couple of groups that are specific to your situation as well as the general page. I use mostly my phone for bcna. If you scroll past the discussion here you will come across the groups click on that and you can see the full list.BRACA . & Young women you ask to join the group. You will hear back from the moderator. It’s probably too late today to hear back.2 -
Hi batshan
So sorry to hear of you diagnosis at such a young age. It sounds like you are in good hands and there is some good advice already for you. I wish you well and stay in touch with this group as there will be other people who have the same and will be able to understand your feelings and support as you go on this journey. Take it one step at a time. Best wishes for your surgery and recovery.1 -
@batshan hopefully you found your way to the group. It has been quiet of late, however you are welcome to start your own discussion thread.
I have also added several My Journey articles and encourage you to call our Helpline 1800 500 258 if we can help with anything more specific.1
