Hello, I've never done an online blog before - so I hope I don't stuff it up! I've just been diagnosed with grade 3 invasive ductal carcinoma in my right breast (with postive lymph node). Its a triple negative cancer. I'm quite overwhelmed and trying to fgiure out what path to choose and medical teams and surgeons and reconstructive surgeons! I was confirmed BRCA1 gene mutation a couple of years ago. I thought I'd have more time. I live in Perth (but I'm from QLD). I'd love to hear from people about how to move forward. I'm single, and haven't had children (neither by active choice - life just turned out that way unfortunately). I'm working on staying really positve - but am struggling a little bit. Thank you!

Hey Leonie,I'm so sorry to hear about your diagnosis. Completely understand your feeling of being overwhelmed, there's a lot of information coming at you from all sides, particularly in the early stages. Strongly recommend taking a notepad to all your appointments as it's way too hard to remember everything they tell you! Take your time talking to different health care professionals, get second or third opinions if you feel you want them! And remember, there's no right or wrong decision, just the one that's right for you!I'm also a young (27), single, childless lady in Perth - so you aren't alone! If you want any recommendations on Perth doctors or fertility treatment feel free to send me a private message :) There's lots of women on here that will be invaluable resources to you.Take it one day at a time. Keep staying positive :)All the best,Kerryn

Welcome to the online network.This is the place to come for support and advice on getting through your BC journey,from ladies that have gone before you.It is an amazing place,so try to make sure that you use it:) Firstly,remember that these days,BC in it's many forms,is very treatable,and most ladies go on to,lead long,healthy lives.And also chemo,radiation etc,is much more refined than it was years ago,and many ladies,even work through their treatment.I would advise you ,in the beginning,to be totally guided by your medical team,and only take it one day at a time.It is so easy to think ahead,and it doesn't achieve anything.Easier said than done though,but this is where this network is so great at supporting you:) There are many resources available,and the best ones are from the reputable places like BCNA and CANCER COUNCIL.Beware of all the rubbish out there on the internet.I want to tell you that there is an end to having BC,and once you get started on your treatment,you will begin to feel a lot more in control.The beginning is always the very hardest,because there is so much waiting,and getting tests done etc. Take care,and I'm sending you a big cyber hug.xoxRobyn

Hello, the first couple of weeks can be very difficult but finding this site is excellent. I am sorry you need us but a huge welcome. Any time night or day you can hop on and get support and advise. There is a Perth after noon tea May 24th in Mount Lawley so if you join the group you will get an invite. A lovely bunch of Pink Ladies. I have only been once before. I am a public patient at RPH and in a week will be doing my 5th round of chemo and then only 1 more ye ha! Taking a friend to all appointments and you can ask to record. I cannot tell you how much I recommend this as my brain just goes off to La La land at appointments. Where are you in Perth? I am down here in Mandurah. Take one day at a time all the best and here's a healing hug Sarah54

So sorry to meet you like this. It is such an overwhelming time; big hugs to you. This is a great network of amazing women, so you are on the right track. When I was diagnosed last November I found it really difficult to sleep, and coming on line to this forum was a lifesaver for me. Be good to yourself, take a friend to your appointments, take all the time you need off work, stay away from dodgy internet scary sites, assemble a great team of health care providers around you, trust yourself, take time to sit and enjoy the beauty of the world every day, and do whatever you need to do to stay sane, whether it involves copious amounts of chocolate, or movies, or walks in nature! Lots of love and thoughts to you! Xx Lisa

Just diagnosed - feeling very lost

30 Replies

Christine_Marie
Member
12 years ago
I am also a Perth lady...living in Mt Richon:) Everybody has given you great advice.....I would like wish you lots of good luck, especially for your appointment tomorrow, I hope it goes well for you... You will feel much better when you know what your plan is, then you will be able to put things into a much better prospective... I found it better to just take one day at a time...... come on here when ever you need to, there is so much to learn from other women from all different ages & with all different journeys.....we are all in this together.... Take care & big (( hugs)) for you:) Christine :) xox
leanne_29
Member
12 years ago
Hello and welcome to our group. Like you I have known I had the BRCA1 gene before my TNC diagnose and in Feb 2011, I had a oopherectomy being 46 and tired of being peri-menopousal. The gene people asked me what I wanted to do with my breasts and I told them I would watch and see. On Nov 2012 my mammagram came back suspicous and an ultrasound plus biopsy showed BC. I opted for a bi-lateral mastectomy with re-construction with expanders at surgery. TNC - Stage 1 - Grade 3 - no lymph node involvement. I had 6 rounds of Chemo and have had my implants in for 6 months now but am having trouble with the right one - the one that had cancer. Like everyone else has said ,it"s daunting but do-able and there are many helpful lovely ladies here. All the best and hope to keep up with your progress. Love Leanne xx
leanne_29
Member
12 years ago
Hello and welcome to our group. Like you I have known I had the BRCA1 gene before my TNC diagnose and in Feb 2011, I had a oopherectomy being 46 and tired of being peri-menopousal. The gene people asked me what I wanted to do with my breasts and I told them I would watch and see. On Nov 2012 my mammagram came back suspicous and an ultrasound plus biopsy showed BC. I opted for a bi-lateral mastectomy with re-construction with expanders at surgery. TNC - Stage 1 - Grade 3 - no lymph node involvement. I had 6 rounds of Chemo and have had my implants in for 6 months now but am having trouble with the right one - the one that had cancer. Like everyone else has said ,it"s daunting but do-able and there are many helpful lovely ladies here. All the best and hope to keep up with your progress. Love Leanne xx
justpeachey
Member
12 years ago
Hi Leonie,

Sorry it's taken a while for me to get on here to write to you. I've just read all the above comments & I too would love to
welcome you. I wish it was under different circumstances.

I was diagnosed in March this year. I had a lumpectomy at SJOG in Subi. Mine was also triple negative. Stage 1, Grade 3 Invasive Duct Carcinoma. No lymph nodes were positive. Because of the triple negative I was advised that chemotherapy was the best option, followed by radiotherapy. I had my first round of chemo on 2 May at SJOG Subi (today is day 11). I have 5 more rounds to go. I haven't been tested for the BRCA gene yet but I had blood taken before I started chemo. My appointment for genetic counselling is on 20 May.

I still consider myself young (I'm 39) and I have 2 children so I can't really help you out with any advice regarding fertility. However both my Breast Surgeon & Oncologist have been amazing (both based at SJOG Subi) so I'm sure yours will be too. If you'd like to message me privately regarding that please don't hesitate to drop me a line.

I live in Floreat. It's not too far from East Vic Park. I would be happy to meet you for a coffee etc. I haven't been to any of the support group meetings in Perth but last week I went to the "Look Good Feel Better" workshop at SJOG Subi. It was wonderful.

Like one of the ladies above said (I think her name was Sam?), I'm also a member of the Young Pink Sisters group on Facebook. They are amazing. I get a lot of help & information there as well as this site.

I also had really bad insomnia post chemo so here & the FB site were invaluable during that time :)

Take care of yourself & hopefully we'll chat one day soon.

Best wishes,

Nicola x
Chris
Member
12 years ago
Hi Leonie, I am from Sydney, but now live in Perth. I am 3 1/2 years post diagnosis. I am also involved with the Perth ladies, and the get togethers we have are at my house, which is in Mt Lawley, not too far from you in East Vic Park. We would love to see you there at our next get together which will be on Saturday 24th May. Please send me a private message and I will give you the address. Any other Perth women who would like to come please also private message me. (To do this just touch the message on my profile picture and a message box will appear). Good luck with everything, and hopefully we can meet up with you soon. Chris xx
JennyK
Member
12 years ago
Hi Leonie

You've got some great advice from all the other ladies that I've just read through. Just wanted to get in touch and let you know you will be totally FINE! It's so so scary when you first hear the news, but SO many of us have been in your shoes and come out the other side. Just remember that - you probably have some tough times ahead, but you will come out the other side too.

My cancer diagnosis was nearly 3 years ago now (I was 39, but still young!). I've had a lot of treatment and surgeries and have come out the other side in one piece! Mine was not ductal carcinoma but two lumps, grade 3, 12 positive nodes which scared the hell out of me. I'm BRCA1 (did not know until after I found my cancer) and so after my cancer treatment I had double mastectomy (great new boobs now) and as I've also had my children I also had an oophorectomy. Please tap into the hereditary cancer clinic at your hospital if you haven't yet. They are full of knowledge and will guide you through your decision making process.

My advice is to listen to your doctors rather than Dr Google.

Get some tools from a good psychologist to help you to deal with things, uncertainty was a big one for me. Relaxation and de-stress techniques are so important.

I am now feeling great and enjoying life again. You will too

Take care and if you want to get in touch directly, PM me.

Wish you all the best

Jenny
JennyK
Member
12 years ago
Hi Leonie

You've got some great advice from all the other ladies that I've just read through. Just wanted to get in touch and let you know you will be totally FINE! It's so so scary when you first hear the news, but SO many of us have been in your shoes and come out the other side. Just remember that - you probably have some tough times ahead, but you will come out the other side too.

My cancer diagnosis was nearly 3 years ago now (I was 39, but still young!). I've had a lot of treatment and surgeries and have come out the other side in one piece! Mine was not ductal carcinoma but two lumps, grade 3, 12 positive nodes which scared the hell out of me. I'm BRCA1 (did not know until after I found my cancer) and so after my cancer treatment I had double mastectomy (great new boobs now) and as I've also had my children I also had an oophorectomy. Please tap into the hereditary cancer clinic at your hospital if you haven't yet. They are full of knowledge and will guide you through your decision making process.

My advice is to listen to your doctors rather than Dr Google.

Get some tools from a good psychologist to help you to deal with things, uncertainty was a big one for me. Relaxation and de-stress techniques are so important.

I am now feeling great and enjoying life again. You will too

Take care and if you want to get in touch directly, PM me.

Wish you all the best

Jenny
BecJ
Member
12 years ago
Hello all new members and sorry you have to be here. But I found it helps to read, look up or ask things when you need too. I'm a single mum in my thirties with 2 preschoolers. We have been on this BC journey for 8 months. I have locally advanced BC grade 2 stage 3 DCIS and invasive with 3 auxillary nodes. I have done 6 months of chemo and am 2 weeks post mascetomy with auxillary dissection. I start radiotherapy soon. But as I'm her2 and estrogen +, so I do some other treatments too. I'm not braca 1 or 2 but due to family history or breast and ovarian am on an ongoing assessment for a gene fault. As I have kids I'm lucky this is not another decision to make. My experience is different to most I speak too but I can offer that it will get better. Some days or even a hour will be hard emotionally or/and physically please be kind and gentle with yourself. In another day or two you can feel different. Take a friend to appointments and a book. Public has been good for me so far. Try to keep your fitness up and massage if you can. Some ppl breeze through not me but even I'm feeling like a new person for the first time. Good luck and ask for help from those that offer. Bec x
BecJ
Member
12 years ago
Hello all new members and sorry you have to be here. But I found it helps to read, look up or ask things when you need too. I'm a single mum in my thirties with 2 preschoolers. We have been on this BC journey for 8 months. I have locally advanced BC grade 2 stage 3 DCIS and invasive with 3 auxillary nodes. I have done 6 months of chemo and am 2 weeks post mascetomy with auxillary dissection. I start radiotherapy soon. But as I'm her2 and estrogen +, so I do some other treatments too. I'm not braca 1 or 2 but due to family history or breast and ovarian am on an ongoing assessment for a gene fault. As I have kids I'm lucky this is not another decision to make. My experience is different to most I speak too but I can offer that it will get better. Some days or even a hour will be hard emotionally or/and physically please be kind and gentle with yourself. In another day or two you can feel different. Take a friend to appointments and a book. Public has been good for me so far. Try to keep your fitness up and massage if you can. Some ppl breeze through not me but even I'm feeling like a new person for the first time. Good luck and ask for help from those that offer. Bec x
dmed
Member
12 years ago
Wishing you all the best . I know you won't feel alone now you are on here. Just ask and someone usually has a answer for you. Remember to take plenty of me time and look after yourself. Take care Deb

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