Newly diagnosed and learning

Lillian67

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.

brightspace

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 acces
Keep messaging 
All the best b

Hopes_and_Dreams

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

iserbrown

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 

Share

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

Sheryl xxxx
   

adean

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

iserbrown

Great message from @adean be kind to yourself and allow time for rest and healing.

We're all in this together 
Take care 

melclarity

@Lillian67 a big welcome to you and massive hug!!! It is incredibly overwhelming in the beginning and the best thing I can say after my 6yr journey and having it twice is one step at a time one day at a time. I know before we get our diagnosis it is so so hard in terms of where it is headed what to expect. So much is unknown and its frightening, of course. So really talk with your Oncologist and dont stop asking if theres something youre not quite sure of. Your Team is so important, and as Adean said, you absolutely will get through it one step at a time. Its normal to think the worst so very normal. But know you have an abundance of support here, with these amazing ladies!!! just fantastic, so please anything we may all be able to help with, ask away! This is our safe haven when we can share exactly how we feel. I personally love it and these ladies because I can't talk to anyone else who 'gets it' like they all do! Big hugs xo Melinda 

RNSW

Hi @Lillian67,
Welcome xo I know it is overwhelming right now but it does get easier. I was diagnosed a year and a half ago at 40 with 2 sons. We are so much braver and so much stronger than we know. All the women here have walked the path you are unfortunately on and on the days you need more strength remember we are here. Wishing you the very best Rita xo 

Unicornkisses

Hi Lillian67, welcome to the best place to help calm the anxiety that you will experience during this awful time.
I am at a similar stage to you, though no one has mentioned a PET scan to me.
I am still waiting for my bone and body scan results.

I have copies of my pathology reports both from the scans and biopsies prior to surgery and pathology on the cancers removed during surgery.
I am trying to understand them so I know what sort of cancer I am dealing with.
I feel this will help me understand the Chemo I will be prescribed, what it is aimed at and what it is supposed to do. 
I am slowly making sense of the reports and thankfully have a friend in pathology to ask anything that confuses me. There are a few good websites too that can explain the various report findings.

When I see the Oncologist, one of the first questions I will ask him is to explain the after surgery pathology report, and what it means in terms of the type of cancer I have.
this is so I am sure I understand it.

if you don't have a copy of your pathology reports, and you want one, you can get them from your GP or surgeon.

my pathology lists
ER +ve. 3+
PR +Ve  3+
HER 2 is confusing as one report says Equivocal, one says positive and one says negative.

so I am hoping with the oncologist explaining I will understand better.

The My Journey Book is excellent to read and take notes of questions to ask.
Take it slowly when you can concentrate, it is emotionally draining digesting all this information, and I can only do it in small doses before it all becomes too much and I have to stop.
But each time I build up a bit more knowledge and understanding.

Reading other people's posts on here too really helps me to gain more understanding and knowledge.

There are wonderful people on here who have regrettably had a lot of experience on this Cancer  roller coaster and happily answer questions.
Ask anything, and I really hope it helps you, Jennie

 

Zoffiel

Ah, Lillian, sorry to see you here. Don't stress too much about not understanding everything. It's a whole new language and until you get used to it everyone might as well be talking Swahili. Sometimes you have to take a bit of a leap of faith and hope the experts are doing their stuff. A bit like getting the car fixed, find someone you trust and hope for the best. You will start to figure it all out, we are adaptable animals and we learn stuff.

That said, it really pays to get organised. Get a good folder, a month a page diary and start filing everything. Ask for copies of every report. Get a business card from every doctor, specialist etc and put the date you saw them on the back. UR numbers (your patient number) for hospitals are really handy to know. They print out sheets of barcodes with that number on them which get stuck to all your paperwork, blood tests etc. Nick a page of them, they can come in really handy and if you ring a hospital and know that number (different one for each hospital) it makes life easier. Stick them to your phone and any personal items that you take for hospital stays.

Never, ever get admitted to hospital without taking a thermos mug. Ever. And take your own teabags and coffee with you if you are fussy. Learn to wait--which for me is still the hardest lesson. Marg xx

rowdy

Good morning Lillian welcome to the site. not much to say as I can see the other ladies have already welcomed you and given you good advice. You are not alone all of us have been where you are now.. Start making a list to take with you  you see doc next, because your mind will go blank and you will forget what you want to ask. Be kind to yourself you have along trip ahead and remember your not alone we are here xxxx

Brenda5

Sorry to hear yet another fallen prey to breast cancer but welcome. We're not a bad bunch to be associated with. Because your lump is 8cm I imagine is why they want to do chemo first rather than surgery and then chemo. Its to shrink it all down and chase down all the feelers and hopefully stop it all dead in its tracks before they go doing surgery. The type of cancer, your age and circumstance all play a part in what sort of chemo you will have. Some have rather challenging side effects especially to self image and losing hair and nails but some effect little more than flu symptoms. One pretty common theme is it makes you dog tired, not so much in needing to sleep but weary in the whole body. Its taking me about a year to recover from chemo. I just had blood tests which say everything's A ok after 10 months but I still need another couple of months where my energy levels not only come but "stay" a while. It does get frustrating and I feel I have aged about 20yrs in one year.

primek

Hi Lillian. I imagine your head is spinning at the monent and you would be feelibg rather anxious. I know myself I cried a lot ...especially at night when thete was nobody awake to see me being brave. Knowing the stage doesn't really help at this point for you. All you need to know is that you have breast cancer and you are going to do everything to fight it.

I had a week to a page diary to write in appointments and questions as it fitted in my handbag. I also bought one of those squueze box type fold out folders (pink of course ) where I kept pathology, scripts, info from surgery stuff, appointment slips, copies of medical certificates...iptaas forms (I live far away from a major public hospital )

Start to plan things like scarves, caps, wigs. (Google chemo headgear Australia) Things to do during chemo like books, dvds, colouring books or just someone to sit and chat with you.

You might want to do some pre planning for meals that can be frozen to make life easier on chemo.

Financially I was able to use my Long service leave and claimed against my life insurance under a trauma component. You may be able to look at sickness benefits and carers allowances...but mostly this is if for 6 months or longer. But havibg children it might be different.

Have you a plan for you babies when unwell. Call on friends and family...share the load. Start enlisting help. Even a roster of someone just to be there during your first week following chemo cycles when not so well. 

Okay...it's such a tough time for you. Planning helps to keep your mind busy.
I hope all goes well for you. Kath x

Unicornkisses

I just bought from Big W a large planner that magnetises onto the fridge. It was $10 and comes in pink! (And blue if you prefer)
it is a white board type you can fill in the month and dates
it shows the whole month and a few days either side.
I got it just for my medical appointments.
it is excellent, I can see immediately what I have on, especially when on the phone making new appointments.
And my husband can see what I have coming up too, as he is coming to most of my appointments.
I still have a week to view diary too, which has all my other stuff in as well as the medical appointments.
I find doing these planning types of things help me get my head straight and fills the time between appointments.

primek

I have a large calendar with big squares that I wrote all my appointments in once home. It also meant others knew when my appointments were and reminded me.. as honestly I just had an awful memory during chemo...I really needed minders.