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

Cate64
Member
9 years ago
@Lillian67 I amagined the Chemo going thru my systems like like little pacmen, munching up the cancer cells as they went :)
primek
Member
9 years ago
If your tummy is churning they're definetly medications to improve it. You do not have to suffer. Maxalon was no good for me, it made me restless but still sick. I ended up on ondasetron, stemitil, nexium and additional steroids. A trick with ondasetron as dissolves on the tongue was to have a sugarless mint at the same time, half an hour before meals (as it tasted foul to me). I tried everything for the horrid constipation and the only thing tbat worked was movichol sachets morning and night, started night before chemo. Once on that. ..only needed it for 3 days.
Zoffiel
Member
9 years ago
That will be the steroids keeping you awake and jittery. It passes. M
melclarity
Member
9 years ago
Lillian it is tough but just take a minute at a time and as Kath said let your Team know any concerns you have and talk with us as Im sure we can help support and talk of symptoms to ease your mind. Be kind to YOU is the best thing I could say to you...and though it makes no sense at all, the treatment makes you sick...to in fact make you better. I struggled with it very much but a day at a time as I went. Hugs Melinda xo
Lillian67
Member
9 years ago
Can't sleep. When I close my eyes it's like I'm dreaming I fast forward. Open my eyes, tummy starts churning.
im going to think of it as the cancer cells screaming, thanks @primek :smile:
primek
Member
9 years ago
Well done....hear those cancer cells screaming. Hope round 2 goes well. Keep in touch with your team about side effects, they can help and adjust medications as needed.
Afraser
Member
9 years ago
You just turned an important corner, you might not believe it yet but you have. You are on your way to being well again. It won't feel like it, and if won't happen overnight but, at the risk of sounding like the ad, it will happen. Believing helps. Best wishes.
Lillian67
Member
9 years ago
Cycle 1 done and dusted.
the centre is lovely, I'm loving all the crochet blankets. A lovely lady dropped off some chemo caps so I picked myself up a cute little turban.
feeling a tired and a little nauseous but the steroids are making me jittery.
Part of me still can't quite believe this is what's happening but there it is.
Sparkles
Member
9 years ago
Good luck Lillian! I hope it all goes to plan and you sail through
melclarity
Member
9 years ago
@Unicornkisses well I got the Aqua hat from headcovers.com it was just a cotton small hat, the actual small scarf I added myself, believe it or not My mum made a dress and there was this little scarf left over and I found it and thought hmmm I wonder if it would look ok...and so I tried it on, only one time I ever wore it, so it was lovely to have my Mum close to me...Thanks xo

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