first appt

CarrieP

Hi everyone, well I had my first appt at the hospital today with the breast surgeon, was very anxious as did not know what to expect, was really under the impression that surgery would be my first point and then radiation or chemo.

Surgeon had reviewed my pathology results from when I had a core biopsy and they have said I have triple negative breast cancer, stage 1 as the tumor is still less than 2cm (well it was when I had my ultrasound 2 weeks ago) really don't know how fast these things grow.

they have advised due to my age (40) and it being TNBC that chemo is the first stage and then surgery, but it is my call - would really love some advice on this as was fully preparing myself to have surgery.

still anxious as reading online that TNBC is quite aggressive and higher chance of recurrence.

I am trying to stay positive and now waiting for my bone scan in a week and should be seeing the oncologist to plan out my chemo plan, sorry if I am missing up in the terminology or abbreviations still trying to get my head around all the different types x

AllyJay

I was also told to have the chemo first and the surgery after. My initial instinct was to chop it off...now...yesterday preferably. To be frank, I thought that as a public patient, their lists were probably booked up, and that they were just tossing me a bone to keep me busy until a slot came up. Wrong.It was explained to me that the cancer in my breast itself would not kill me, but that any cells which might have set sail to distant parts very well might. The neoadjuvant chemo (chemo before surgery rather than after) would deal with any such feral cells and also, it would shrink the tumour in my breast before surgery. Also, the pathology reports from the removed breasts (I had both off), would tell the team how well the chemo had worked. The result of my pathology from tyhe surgery was that there had been a 100% pathalogical response to the chemo, and that only the empty tumour beds were found, even in the one affected axillary (armpit) node. Good luck with your treatment.

CarrieP

Thanks so much AllyJay, that was my first thought aswell, I just want this gone.
your story has set my mind at ease a little x

AllyJay

I'm glad I could help @CarrieP...even if just a tiny bit. You'll find yourself more familiar with the different terms used, but in a nutshell, the stage is how large it is and the grade is how fast it grows. So for stage, a studio apartment versus a five bedroom Mc Mansion and for grade, a bicycle versus a VW or a porsche. There are many types of breast cancer, but the majority are either hormone (estrogen and progesterone) driven, or not. My type feeds on estrogen, so I'll be on a hormone suppressant for the next ten years, so if any rotten cells are kipping somewhere and re awaken in the future, they won't have any to feast on. Yours is not hormone driven, so you won't need these. There are information sources available via BCNA, but I'm a Luddite, and have no idea how to direct you to them. Perhaps the ever helpful other members will hop on and help with that. Avoid Dr Google as the information is often outdated, and in any event, may not even apply to you. Big (((hug)))..Ally.

Mazbeth

Hi @CarrieP, @AllyJay has given you great information. I can’t comment on the specifics of TNBC as my BC is different. I never realised there were different types until I found myself on what sometimes feels like a parallel universe. I was given the same advice about chemo first, my oncologist said it is a fairly new approach, but he said it makes sense to knock out any rogue cells as soon as possible. 
I had chemo (4 x AC, 12 x taxol) followed by a bilateral mastectomy (BMX). I was diagnosed in December last year. I now take the hormone suppressants. I will be honest and say that I was anxious about not knowing the final pathology until June this year - I only had the core biopsy and MRI results to go on whilst I had chemo. The pathology will have a lot of detail about how well your BC responded to chemo and that is great information. 
I know it feels like you don’t have any control at the moment, but your medical team are going to guide you based on the latest research. Thankfully, there is fantastic research on BC and treatments are improving constantly. It’s true that the information on the internet is often outdated so please make sure you are only accessing reputable sources. Take your time to make decisions regarding the type of surgery you want because you get to choose your path forward. If you have chemo first, you will have time to think about your next steps. You will soon have your plan and a course of action. 
You will get fantastic information and support here. Please make sure you get in contact with a breast care nurse as they are a wealth of information. @arpie is fantastic at helping new members find their way to relevant discussions. I am wishing you all the very best. Take care and we are here for you. Mx

CarrieP

Thanks so much @Mazbeth. X

Sharla

Hi CarrieP

I also have TNBC (invasive ductal carcinoma grade 2) with possible satellite cancers and had a mastectomy last week. I’m 45 and surgery was recommended first in my case by two surgeons. I understand my treatment following depends on the pathology report which I get next week, at which point I am also ‘staged.’

I think there are numerous factors as to surgery or treatment first that are considered and it varies. I have moments of extreme anxiety and fear thinking and waiting for the results. I had lost 5-10kgs leading up to the diagnosis, am getting asthma for no reason and tire easily. It’s all so scary. I need to recover from surgery for 4-6 weeks prior to commencing any treatment. 

I probably haven’t helped much except there’s pros and cons of both depending on many variables. 

All the best!!

iserbrown

https://www.bcna.org.au/understanding-breast-cancer/what-is-breast-cancer/types-of-breast-cancer/

https://www.bcna.org.au/understanding-breast-cancer/what-is-breast-cancer/triple-negative-breast-cancer/


https://www.bcna.org.au/understanding-breast-cancer/treatment/neoadjuvant-chemotherapy/


I am tagging @SoldierCrab as she maybe of help to you with regard to TNBC

iserbrown

And one more link

https://www.bcna.org.au/resource/fact-sheet-breast-cancer-pathology/

Hope the information helps!  
There's a lot to take in and terminology to learn 

Take care and best wishes 

arpie

Hi @Sharla - so sorry to read of your own diagnosis ... I hope you are recovering ok from the surgery.  Make haste slowly .... and all the best for your pathology reports next week.  The waiting really sucks .... trying to keep busy really helps pass the time xxx

@CarrieP - so sorry to read of your diagnosis and the obvious shock that you are in .... Your whole world is turned upside down in a millisecond, as you navigate unknown areas of our health system! It is almost a conveyor belt! First you do this, then this, then go there and do that, then come back here and do this .... and it may take a year or two for your life to settle down.

It is totally 100% ok to skip between anger, denial, sadness - but if your find the sadness is overwhelming you, please seek professional help! Your GP may be able to refer you ... or your local Breast Cancer Centre May have help there .... where you are more likely to find a bc specific psychologist.  Just talking about it openly and sharing it with a professional should be able to give you coping mechanisms ... 

You will make new friends who will support you (specially on this forum) and may even lose some old ones, who just do not understand what you are going thru. Most of us here, have found wonderful friends within the group and have even met up with them in ‘real life’ before this Covid thing! 

Personally I found that it mucked with my BRAIN more than anything else!  And sometimes that is very hard to control, as it has a mind of its own! Keeping BUSY, doing things is the secret .... get back into your hobbies or take up a new one - even more so now since Covid!

@iserbrown has put up some terrific links to help explain all the terminology so I’ll whack up some of the ‘funny ones’ to help while away the waiting times ...

Try & keep your sense of humour 'up there' - we have a really good 'funnies page' (called Friday Funnies, but we add them every day!!)  Just click on the link to add pics and posts ... 
https://onlinenetwork.bcna.org.au/discussion/19116/friday-funnies#latest

and some ‘wise words’ to give you a lift now and then ...
https://onlinenetwork.bcna.org.au/discussion/20854/wise-words#latest

If you are into arts & crafts, we have a 'Creative Corner' 
https://onlinenetwork.bcna.org.au/discussion/14979/creative-corner#latest

 and if into your garden, a Gardening post as well!! 
https://onlinenetwork.bcna.org.au/discussion/comment/186078#Comment_186078

Try not to use Dr Google as there is just so much conflicting information out there, and every BC case is 'unique' and it will only scare the pants off you!

All the best with your ongoing appointments.   We have some posts here on what to take with you too, to make it 'easier' on you.  
https://onlinenetwork.bcna.org.au/discussion/16442/prep-for-surgery/p1

and for your annual checkups, some ‘tick sheets’ to help you put your questions together for your medical team.
https://onlinenetwork.bcna.org.au/discussion/21973/questions-to-ask-post-surgery-of-yourself-to-your-specialists-tick-sheets-self-assessment#latest

take care both of you, and all the best for your ongoing appointments xx

AllyJay

Exactly @Sharla...there are many different treatments for this shitfest. I liken breast cancer to the term "small business" Just as the term small business covers a number of types, so does breast cancer, A pet shop is a small business, so is a hairdresser, bakery, toy shop and plumber. Each has different staffing needs, stock, store size and layout. Their customer demographics are different as are their hours of business.All small businesses don't have some stock, one size fits all, set of criteria as to how they run their own small business. Same for breast cancer. This is an "umbrella" diagnosis with many variables. This type, versus that type. This grade or stage versus another. This patient with their age and general stage of health versus another. One is not better than the other...each person is treated with the weapons chosen by their highly qualified team and they are used in differing sequence too. My needs...medically stuffed up due to other conditions with one foot already in the grave and the other on a banana peel, might differ to the treatment given to a bright eyed and bushy tailed thirty something year old, who has a different cancer to me anyway. Try to relax...breast cancer (all types) is a well known, well researched and well resourced cancer and the professionals will give you the best treatment for you.

SoldierCrab

hi CarrieP

there is a great support group  on facebook .... https://www.facebook.com/groups/1166665270079659
I am on way to appointments and will reread this post when I get back home. 

Breathe...... 

CarrieP

thanks @SoldierCrab x

SoldierCrab

HI CarrieP 
also I wanted to let you know I am over 8yrs since diagnosis and cancer free. 

CarrieP

Hi SoldierCrab, that's great news x

kezmusc

Hi @CarrieP, and the other newly diagnosed ladies.

I'm a bit late but have just been catching up.  The ladies, as usual, pretty much have everything covered.  I just wanted to say Hi and it truly sux you've been thrown on to this roller coaster.  Some of this may have already been said so I apoligise if I'm doubling up. I am in Ipswich so not too far away.

This start is just the pitts.  Apart from the shock and fear of being told you have cancer, I found the staging CT was one of the worst parts.  I was too bloody scared to get the results myself as I new it was already spread to nodes, so I made my husband ring for me.  It was clear.
The second most awful one is the oncology appointment.  It's quite a daunting experience.  Please remember, the list of possible side effects is long and horrible,  it does not mean you will get all or even many of them.
I worked part time, ran my farm and pretty much did all my usual things. Went to school formals, graduations and hosted xmas two weeks after chemo one.   Some days were crap but there was a lot that weren't.
One thing I did quite by accident was take a lot of photos of everything you do along the treatment train that way when you look back on that part of your life later on it's not all about the cancer.

It doesn't feel like it now, but you got this.  We never know how strong we can be until push comes to shove.  All the best lovelies.  Everyone is here for you.

xoxoxoxo