Two days ago my life changed forever

brisbanestory

Hi everyone, just hoping to reach out and seek some advice at a time that my life feels completely out of control on two levels. 

Two days ago, my (very recent) fiance and I arrived home from our long awaited overseas holiday. We'd been scrimping and saving for this trip, and had the most fantastic time. Although exhausted and jet laggy, we were so excited to see everyone and celebrate our engagement. 

My younger sister had asked to come see me when I got home, and although not feeling too crash hot I was excited to see her.  She walked in the door and I could see something was very very wrong.  My 31 year old sister then proceeded to tell me she has been diagnosed with Stage 2 Breast Cancer.  She and the immediate family had known for about a week but she didn't want to ruin the last few days of my holiday so waited to tell me until I was home.  We have a strong family history so breast cancer is not new to us, but the last thing I ever expected was for my baby sister to have a diagnosis so early on. 

The last few days have been a really strange surreal experience.  I was so glad to be able to go to her appointment with her where they talked about a plan of action, and there is some strength in having a plan for moving forward.  My number one priority is for my sister to get healthy and well again, although she has a challenging 6 months ahead of her. 

I am going to do my best to support her through her journey but where I am feeling extra terrified is with my sisters diagnosis, alongside my mum who had breast cancer 5 years back (5 years clear woo hoo!!!! ) all the doctors are now a lot more concerned about me and are suggesting if my sister's gene testing comes back positive, I should also get gene tested and if that comes back positive then I'll have some decisions to make. 

So I'm all messed up about my baby sister facing this battle, but then alongside that also worried about what will happen to my side of the things, and feel completely helpless as these things take time, so I just have to sit and wait... and wait... and wait.....  I just really appreciate finding this forum and appreciate any advice anyone can give. I also hope as this journey goes on, I'll be able to help others and contribute.  Much love to all xx

nikkid

Hi there @brisbanestory - welcome to our forum but so sorry you had to find yourself here. What you will find here though is such a wealth of experience and understanding so hopefully we can help alleviate some of that anxiety you are feeling.  All of us know exactly how you're feeling - not only the sadness for your sister but the fear of a potential BC diagnosis for yourself. So, here goes.......every one of us who replies to your comments will have been in the exact same place as you! AND WE ARE STILL HERE. It's scary, it's yuck, it's confronting, confusing, and at times terrifying, but you will get through it in the way that is best for you, whatever the outcome of your testing, and or your sister's experience.

One important lesson (amongst many) that a cancer diagnosis gives you is this: take every day as it comes, try not to get too far ahead of yourself, and savour the wonderful things about life ....meantime, we will be here to walk alongside you. xxx

brisbanestory

@nikkid, I can't say thank you enough for your kind words and warm welcome - as strange as it sounds I think knowing there is a community out there for support, and to also provide support to, makes it a teeny bit little less scary.  I've been having a bit of a browse and am blown away by how honest, brave, clever and inspiring the women in this network are.  I think when the time is right I'll tell my sister about this network, I think she will fit in here very well   I am truly grateful to have found this community.  Much love to you and everyone, and thank you again xx

nikkid

No worries...it's scary, but down the track you will also (here's cancer lesson number 2) be impressed with your capacity and personal strength x

melclarity

@brisbanestory a big Welcome to you, I'm so sorry to hear of your little Sister, it is one thing when it is yourself going through a diagnosis, so I cannot imagine how difficult it would be for you wanting to be absolutely everything in every possible way for her. I'm sure she's incredibly grateful to you too, this will only make your bond even stronger.

I totally understand your thoughts with your Mum having had a diagnosis and now your Sister and them saying all the what ifs for you. My Mum also had Breast Cancer at 40, I'm the only daughter and I had Breast Cancer 1st diagnosis at 43 and again at 47. What I want to say to you is this, I had the Gene Testing for the same reason you are thinking...it was negative, makes no sense does it? but 95% of Breast Cancer is actually random, so only a small % is hereditary. So very difficult, but I believe in do the tests and get the results to rule it all out or give you confirmed answers. 

So take heart, it doesn't mean that you too will get it, it honestly doesn't. There is so much support here, as @nikkid has said. We have all traveled this path in a variety of different ways, so have a tremendous amount of knowledge and experience and just genuine care for each other. 

Hugs Melinda xo

brisbanestory

Dear @melclarity, thank you so much for your response, it was very helpful and provided some information that I hadn't had before which makes me feel a bit better about the testing.  Best wishes to you and thank you again xx

Mrs_H

Hi @brisbanestory, so sorry you've had to join us but it is a wonderful community. I can relate to your post on the flip side. I am the little sister (29) who had to tell my older (very protective) sister (34) this news. I found it so hard to not only share this news with my sister (and loved ones) but also know that this could have a huge impact on her as well for testing etc. I haven't had gene testing yet so still have that hurdle to face. One day at a time.

The best way you can support your sister will reveal itself over time. For now, as the other ladies have said, take each day and each step as it comes. From your experience with your mum this is treatable/curable, it's just hard to get through. Your sister is lucky to have you.

Turn to the community as you need to. I have found so much strength just reading through the posts.

Good luck with the next stage. Cheers, Jen.

primek

Welcome to the site and sorry you have had to join us. My sister has had a journey similar to yours except she had been away supporting my brothers wife with end stage endometrial cancer not a holiday, sadly. I felt horrible asking her not to stay long after the funeral which was away as I really needed her, I had done the biopsy by myself  and at that stage my husband was still doing the denial / stay positive thing that it might not be cancer. I had a horrendous family history. My Fathers side had multiple sisters who had had bc or ovarian cancer. My sister (from a different father) had breast cancer as did her daughter. Myself, my sister and my brother  (all from same Father -now passed) all had genetic testing and we thankfully did not carry the faulty BRAC1 gene that his family had. My half sister with bc  and her daughter with bc were tested and no gene found. So sometimes it's just rotten luck.

I know that I just wanted to know so I could get on with it. I was over 50 though so it was different for me. I'd been having mammograms for 10 years and my bc didn't show up. I found mine.

So.....what they recommended for my sisters. Even though no gene to have a consult with a breast surgeon who will review risks and may suggest a different time frame and type of screening and / or preventative tamoxifen. There are many different choices and it doesn't need to be decided now.

My breast surgeon said to me it doesn't matter today if you have the gene or not. ..treatment is the same. So a delay would not matter with results..

I was so thankful to have my sister with me. To drag me out when down. Take me to the pool. Get me to appointments when my husband couldn't and just sit with me and watch TV when that's all I could do during the day. I don't know I could have done it without her. 

She is lucky having you there. I know this is daunting for you but just being there is enough. Let her say what she feels and acknowledge those feelings. Never say "just be positive" as sometines you just can't.  But...you pick yourself up and keep going. She will become  stronger than she ever believed she could be,  as will you.  Kath x

brisbanestory

Dear Jen, I'm so sorry you are going through this, and am appreciative of your advice and response. Sending you, your sister and family much love through your journey. I think my sister is so strong, but I also need to read the cues and be pushy when I think she needs help but doesn't want to be a burden! Us big sister have a job to do   You are right, the posts on this forum have been so helpful and there is a great bunch of women out there who are so kind in providing support and advice, very much including yourself .  Thank you again and all the very best, cheers, Soph

brisbanestory

@primek, thank you so much for sharing your story with me, I really appreciate it. Reading through many stories and comments of support to each other throughout this network has been so helpful.  I have been at a loss as to how to help so your suggestions are so great and I will keep them in mind for coming weeks and months.  I have always tried to do my best to protect her and be there for her, so I guess it's just a matter of doing it in a slightly different way.  A huge thank you again and best regards, Soph

Molly001

I'm sorry you have to go through this. Your sister is lucky to have you. I have two sisters. We are very close & I'm happy to have been the one to get bc rather than one of them. In some ways I think your job is the tougher one. One of my sisters was away on a big overseas trip with her family when I got my diagnosis & I waited two weeks to tell her so as not to ruin her 'trip of a lifetime'. Both of my sisters have been amazing, but the one who's really saved me did exactly what Kath suggested. When I felt I had to put on the brave face for everyone else, she was the one who listened & acknowledged & let me fall apart before dragging my sorry butt out to cheer me up. She was here with takeaway, bathing my kids on my worst day after ever cycle of chemo. Mostly, she was just quietly there. My partner (troubled relationship, but that's another story) was the 'stay positive' and 'you're gonna be fine' guy when I lost it, which was completely unhelpful. Sisters have a special bond. As for genetics, I had no family history but I had testing because of my age (39) and multifocal tumor, but still waiting on results. My sisters were told most bc is not genetic & don't stress. If I test positive, which is unlikely, they will take action.

[Deleted User]

Hi @brisbanestory, you are supporting your sister just by being there. I have a big sister and she can be bossy and tell me what to do, but it's just being together that I treasure. She has sat there quietly when I had my first operation and we looked out the window together in silence, she was there when my diagnosis was worse and mostly there when I woke up from the series of operations I had. My mum and my sister are my little support team. It is their quiet and consistent presence that has got me through. I can be honest with them and sometimes tell them to give me some space and that's ok too.

Remember to take care of yourself as well. As you'd know with your mum's treatment, it's a long road but it's made easier with the support of family. There's no right or wrong way. All the best. x 

Pebbz1981

Hi @brisbanestory , Congratulations on your recent engagement, sorry you had to come home and hear the bad news of your sisters diagnosis. I was 27 when i was first diagnosed and remember feeling alone as i was soooo young. It was the worst trying to explain to my mother and older sister that i had breast cancer. Many many years later my mother had to tell me she was diagnosed with breast cancer and just recently ovarian cancer.  My advice would be. just be there for her, I hated when people told me to just stay positive, I started writing in a journal which i found helpful, maybe you can buy her a journal and suggest that to her? Every persons journey is different, once she gets her head around things hopefully she will let you know how shes feeling and what she needs from the people around her. Just as hard as it is fr her it is also very hard on the family members, so remember to also take care of yourself. I spoke t the counsellor at cancer care aswell and she helped me ALOT, my husband actually also spoke to another counsellor at cancer care too as he was holding alot of feelings inside ( different counsellor due to conflict of interest). Good luck with it all and all the best for your sisters journey.

brisbanestory

Dear @Molly001, a big thank you for your kind words and advice.  Your story and advice is so so helpful in understanding what my sister could be feeling, and your suggestions on how I could be helpful are great.  Sending you and your family much love and best wishes for the future

brisbanestory

Hi @LucyE , thanks so much for taking the time to respond.  What really resonated with me in what you wrote is the sitting and providing quiet support - I am not sure what to say so it's good to know what just being present is a help.  She has a long road ahead of her but our family is rallying around, and having all these great suggestions up my sleeve, I may be able to pass them on to other family members as well.  All my best wishes to you and thank you again x

brisbanestory

Dear@Pebbz1981 , a big thank you for your kind support and advice, and I am so sorry to hear of your mum's recent diagnosis, sending my best wishes to you all during this very tough time.  I really appreciate your honesty, especially about being told to 'stay positive'.  I have tried to not flog the positive stuff too much (which is hard as I'm generally a pretty positive person) as I know right now that would be the last thing I'd want to be hearing and my sister would probably tell me to p*ss off (lol I would too!!!).  I love the journal idea, I will definitely have a look for something beautiful for her. We have been given information around counselors which is so great to have, and I truly believe this network is also so helpful.  The thing I've appreciated most is people's honesty, even when it's not all pretty and lovely.  Thank you again and sending much love to you, your mum and family x