I've read through some posts and realise I have lots of gaps of knowledge about what I have.I know I have breast cancer, it's about 8cm, I know its spread to my armpit lymphs and now the nodes near my collar bone are swelling. It is oestrogen positive but testosterone negative.I have had a bone scan and CT that came back clear thankfully and Im off to get a PET scan next week.So far I have seen my GP, a surgeon and a breast care nurse (who is awesome).I have lots of brochures that I have been working my way through and I received the My Journey pack that Ill go through this weekend.I see an oncologist at the end of next week and have been told that more than likely I will be doing chemo the following week.I have no idea what stage or grade it is.I'm 40 with 2 beautiful little girls, 4 and 1, that I do not want to leave.It's been about 4 weeks since my initial diagnosis. I keep swinging form I just want my treatment to start to I need more time to know whats happening.

Hi lillian big ((huggs)) i would agree the waiting is the most difficcult to handle glad you have started contact its a great group who will be contacting you with support talk.if you feel you are super anxious please see your gp asap...your young family will .keep you super busy enjoy their stories and playtime .we live in an amazing country with great medical accesKeep messaging All the best b

Hello Lillian67, I'm so sorry to hear your diagnosis but welcome to the online forum. You will find so many kind, supportive and strong women here who truly understand what you are going through. Every one of us had knowledge gaps when we were diagnosed, unfortunately breast cancer is something we learn about as we go and we continuously share and learn from each other. I had a mastectomy but didn't need chemo but I know you will hear from many women who have gone through a similar treatment plan and will be happy to share their experiences with you. It is like a nightmare being told the news, we have all heard those shocking words. Everything is so overwhelming at first - I know it's hard to believe but you will feel a bit better once your treatment starts and you are doing something proactive. When you do find out your stage and grade, your oncologist will have a clearer idea of what needs to be done. But in the meantime it's wonderful news that your bone scan and CT is clear, hopefully you do just as well with the PET scan next week. Good too that you have your My Journey Kit already, lots of good information and answers there. Remember that you are not alone. If you have questions, need to talk or yell and rant we are all here for you. Sending you my best wishes and a big hug. Please let us know how you are doing. Jane xx

Hello Lillian Sorry that you've had to join us. We are here to help you through the maze of emotions and questions. You're on your way with your My Journey kit. A wealth of information. If you search this site you'll find groups that you may want to join as well as. Aren't the breastcare nurses a blessing to us all!Happy reading. Take care and let us know what the Oncologist suggests for treatment. Sending you a virtual hug xx

HI there @Lillian67. I am so sorry about your diagnosis but can I give you a virtual hug and a huge welcome to the online forum. Here you will find many like minded women who at the start of their diagnosis had lots of questions but did not know what to ask, how to ask it (sometimes fear prevents us) and general confusion and fuzziness. There is so much support here Lillian that I am sure that by end of the weekend you will have many helpful comments and hints so you can be as prepared as one can be. What you need to do right now - and this is the hardest part - is take a deep breath. Keep doing this several times a day over the next few weeks/months.This diagnosis sounds like early breast cancer with some spread beyond the original site (breast) and into your lymph nodes (most common place for bc to go when it goes beyond the breast). What sort of questions to ask is how many lymph nodes were involved (positive for cancer) - you already know it is ER positive (oestrogen). Also, ask what grade your cancer is.You said that the bone scan and CT scan has come back clear - that is the first good sign.The PET scan will reveal more results (if anything to report) when you have that next week. What you are experiencing and feeling is totally normal - in fact, there is no "normal" situation in a bc diagnosis. Because your life has been turned upside down ! The fact you keep swinging between starting treatment and wanting to gather more information is something that I am sure most of us have felt or experienced.You feel like a pendulum at times.Of uppermost in your mind are your 2 little girls - they are babies, in effect. I totally understand where you are coming from. My boys were 5 and 2 when I was first diagnosed. My fear was that I would not see them start school, finish school, grow up etc etc. Well, my eldest is now 2nd year at Uni and my youngest has just started Year 10.Keep telling yourself that you are young, possibly otherwise healthy apart from bc and you have everything to live for. You are not going to leave your little girls as you have everything to fight for.Current treatment delivers great results for early bc. When you see your oncologist next week ask lots of questions - go through the My Journey kit over the next week - several times, if you need to - and jot down any questions you might have. Even ask your breast care nurse - you mentioned that she is wonderful (most of them are !).If you can take another person with you next week when you see your oncologist - a trusted friend, partner etc - that makes a huge difference. You have a support person there - someone who "has your back". An extra set of ears is very handy. Write down any questions you have before you go in and your oncologist won't mind if you jot down the answer or ask for clarification while you are there. You need to put your mind at ease with informative, reliable information as there are lots of frightening websites out there that simply scare and do not educate (and are often plain wrong). My very best wishes to you and your family Lillian <3 Sheryl xxxx

Hi I'm 4.5 years post my diagnosis and I think it's good to know you will get there one day like me. I would not let the big c defeat me but later on wish I had been kinder to myself. Don't ever feel guilty for speaking your mind I had days where I just didn't want visitors and I actualy told them. I endulged in watching mini series I always wanted to but went back to work way to soon, but I did what I thought was get back to normal. You know you never get back to normal but love the new person you become, it can be really shitty but you get there, I'm living proof, xxxxxx adean

Newly diagnosed and learning | BCNA Online Network

69 Replies

Lillian67
Member
9 years ago
Thank you @Tingy for the info about Mummy's Wish, will definitely be getting in touch with them.

I've started on a cuddle blanket for my girls @"Ally Jay" so great to know I can take this along :)

and yes I have been reading about ports and going to ask my oncologist about that.

I thought I was off to see the oncologist last Friday but their office called to organise a cardiograph and luckily I wanted to confirm the appointment and they told me next friday! I had a little meltdown as in my head I was planned out and it just threw me. Instead Im using the extra week to get more prepared. Im holding onto my hair for another week and hubby and I are going away for the night to 'let our hair down' without the kids. I'll go get it chopped off next week.
I went in and saw my GP and got a GP Care Plan and off to see a dietician and sports physiologist. My Breast Care Nurse put me onto a great Catalyst episode about Cancer and exercise and if nothing else it will give me something positive to focus on while the doctors do their thing.

As I am having chemo first before the mastectomy I am feeling very anxious about time passing and giving cancer a chance to grow and spread more. It's sitting like a heaviness on my chest. It's becoming quite uncomfortable and I have some swelling. The lump is almost half my breast.
melclarity
Member
9 years ago
I think its a great idea and honestly I would have gotten it but never had the option. From friends also with BC they were Her2+ they had portacaths because after chemo they had 12 months of herceptin. I was ER+ only and had 5.5 months 12 infusions through canulas some weeks were tough. Hugs xo
Zoffiel
Member
9 years ago
The portacath is a sensible option, Sparkles. A couple of weeks and you will forget it is there. That doesn't mean I won't be delighted to get rid of mine ☺
Sparkles
Member
9 years ago
Hi Lillian67 and everyone. I too am just starting out on my journey and am identifying with everything being said. I received confirmation on my birthday and it has been a total whirlwind since. I have had my surgery and had a couple of lesions removed - HER2+, ER+, one grade 2 and one grade 3, no cancer in the lymph node they removed (yay). I have my scans next week and they are going to insert a Portacath - I have sucky little veins so this is probably a good move.

It is reassuring to read everyone's posts and to know we are all in this together
AllyJay
Member
9 years ago
Oooh...another knitter! I take an "entertainment" bag with me containing my kindle as well as some knitting. Great conversation starter, as I usually get asked what I'm making. I also take along items from my dreaded pile of items which need sewing up. I hate the sewing up and buttons part, and being stuck in the chemo section keeps me honest. I feel so much happier afterwards, knowing that I've now finished 100% something that has been put off.
Tingy
Member
9 years ago
Hi Lillian, I haven't logged on for a while but saw your post tonight. I was diagnosed last April at 39, gone through 6 months of chemo and now in my last 2 weeks of radiotherapy. I'm now 40 and also have 2 little girls, 3 and 1. I highly recommend you to contact Mummy's Wish (a charity that looks after cancer mums with kids under 12). They helped me to apply for Special Child Care Benefit which means that my girls get in-home care while I'm going through treatments. My older one was in daycare and younger one was only 5.5 months so didn't have a spot in daycare, I had to pull the older one out of daycare anyway because I kept getting sick from her while undergoing chemo (very immune suppressed) and for a period of time my chemo had to be delayed because I had infections (nothing serious but when going through chemo we had to go to ED if we get a fever over 38 degrees). Having a nanny that looks after my kids at home is the best solution for me, there were times I physically couldn't look after them so it's good to have someone there in case you are not feeling well. I hope you go through your treatments smoothly.
primek
Member
9 years ago
I am sure you could knit and crochet during chemo and then you could have some hats ready for the cold weather. Really with scarves if you just buy one (or a hat you like) well you might be able to make ones that actually go with your clothes using it as a template. With cold weather I wore a bamboo wig liner as the wind whistled through the little holes.

Sounds like you are keeping busy. :)
iserbrown
Member
9 years ago
You're welcome. We're all in this together and we'll do our best to help you through. I had 6 nights at an Otis retreat and found it so helpful.

lgfb.org.au

Look good feel better another offering for us all
Take care xx
Lillian67
Member
9 years ago
Thanks @iserbrown, my breast care nurse told about this too. Once I get my schedule I will see where there is a window (if it exists) and get away with the family. Im blown away by the support out there.
iserbrown
Member
9 years ago
Here is something for you to check out. It is free and you"ll find it a most precious time. Take care xx

http://www.otisfoundation.org.au/

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