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

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 Avoid Dr Google as the information is often outdated, and in any event, may not even apply to you.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.

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

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

Hi CarriePI 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!!

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.

first appt | BCNA Online Network

22 Replies

Abbydog
Member
5 years ago
I agree with kezmusc, I also took photos of myself and kept a rough diary. Every week or so I listed my side effects.
These were all manageable, but the list has been long. Manageable is my key word. It really is wait and see.
Blossom1961
Member
5 years ago
@CarrieP Once that Onco appt is over you will have a good idea of your plan and it actually helps you relax. Sending best wishes and big hugs
FLClover
Member
5 years ago
@CarrieP Oh, so prob feeling a bit stressed right now 😐. I’m glad you’ve got that feeling of wanting to beat this, it’s the first step to actually beating it 👊🏻. The anxiety is understandable. Try to take someone if you can for support as it’s helpful. Tonight, do something relaxing for yourself, such as a bubble bath or massage. It should help relieve some of the nerves.
You will definitely feel much better after it’s done and your onco has discussed treatment options with you, as then you know what you’re dealing with and gain back control 👌🏻.
Hope you have a good sleep 😘
CarrieP
Member
5 years ago
Hi FLClover, i have my bone scan/CT scan tomorrow and then my 1st oncology appt tomorrow afternoon to get all the details about the treatment i will be doing, definitely a mix of emotions very nervous and lots of anxiety about the bone scan/ct scan and to be honest a weird feeling of anticipation as just want to get to the next step and start to beat this, i feel i am in limbo at the moment.
will keep in touch and thanks for your support x
FLClover
Member
5 years ago
Hope you’re doing well @CarrieP, and that things re treatment/surgery are progressing well. It always helps once you’ve made a decision and have a plan. All the best to you and keep in touch 🍀♥️
CarrieP
Member
5 years ago
thanks @kesmusc and @locksley xx
Locksley
Member
5 years ago
@CarrieP Sorry to see you here. Welcome to the club no-one wants to join. The ladies above have such wonderful advice to share.
kezmusc
Member
5 years ago
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
CarrieP
Member
5 years ago
Hi SoldierCrab, that's great news x
SoldierCrab
Member
5 years ago
HI CarrieP
also I wanted to let you know I am over 8yrs since diagnosis and cancer free.