And so the fight begins...

Prime time

Hi all

just to update my lymph node biopsy and breast lump biopsy came back positive on Thursday 

So that’s it...my fight begins. No staging or anything yet but have my appointment with breast cancer clinic tomorrow...

the lump i have is 3cm and lymph node positive...any advice welcome

thank you and big love to all

melclarity

Welcome @Prime time it's not an easy place to be...but....coming here will honestly be one of the best things you could have done. There is such an array of experiences and knowledge and the best thing is no judgement. Everyone is very selfless and giving of themselves to help make others path a little easier through knowledge. 

So you didn't have a lumpectomy? just biopsy of breast and lymph is that right? so generally the next step from a biopsy is a lumpectomy as the diagnosis comes from that, as it can be different to the biopsy. Its the one way your pathology is definitive. Once that happens you will get your diagnosis, my first in 2011 was DCIS so thats classified as 0 stage, pre cancer. 6 weeks Radiation after lumpectomy and 4 years on Tamoxifen. My 2nd diagnosis in 2015 was 2.5cm tumor ER+ only, Stage 2 Grade 3 and lymph node negative, 6 months chemo and put on Arimidex. 1yr later single mastectomy/diep flap recon.  It is an overwhelming time but here are somethings that may be of help.

BCNA Helpline 1800 500 258 the Helpline is open Monday, Wednesday and Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am till 9 pm EST.

http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p1

You can order your My Journey Kit here and other resources.

https://www.bcna.org.au/resources/

It really is the tough part at the beginning, so take it honestly 1 step at a time. Let us know how your appointment goes and what your next step will be. 

Hugs Melinda xo

Eastmum

Hi @Prime time - as @melclarity said, you’ve definitely come to the right place. 

This forum will provide you with so much support - there’s always someone online to share advice or just a word of encouragent. It’s been a life- saver for me! 

The appointment with the breat clinic will hopefully answer a lot of your initial questions. I’d suggest going with a physical list of all the things you want to know. No question is silly or unreasonable so make that list as long as you need it to be. This is all about you and you want to make 100% sure that you walk out of that appointment feeling confident that you’re armed with all the information you need to take the next step. 

There will probably be some more scans and tests on the horizon and that can be a really difficult time as you wait for results. It’s actually the worst bit - waiting for a plan of action and treatment plan. But as soon as there’s a clear direction for you, you’ll feel much more in control and if information seeking is what helps you, you’ll be able to do some research about what you can expect. 

It’s really important that whatever is recommended to you, you’re confident and have faith in your medical team. If you have any doubts, if your questions are going unanswered, if you feel like you’re not being listened to or that you’re not being treated with respect - go seek another opinion. 

And please jump on here often - whether it’s just to confirm that what’s in your head is normal, whether you just need to download or whether it’s to do research - there are so many amazing people on here that are only too happy to help. 

All the best tomorrow and please let us know how you go! 

Xxxxxx

kezmusc

Hi @Prime time

Bugger.  Once you get the CT over with hopefully you can relax somewhat.  I did find that really daunting as I already knew it was in my lymph nodes (that's where I found the original lump) and could feel that it was quite large and of course our brains like to conjure up worst case scenario.

Everybody's treatment plan is different and it's the waiting and the unknown that is the dark foggy horrible bit. Once you get some more results and have a bit of a plan you'll feel a little more in control of the situation.

Thankfully the CT was clear for every where else and I have my fingers and toes crossed for you. You will hear a lot of different experiences on hear and get some great advice from everybody.

So I ended up with a lumpectomy, re excision for better margins, full lymph node clearance, (5 out of 24 positive) chemo, radiation.

I recovered well from the surgery, it looks quite ok and I had full strength back relatively quickly in my arm after the lymph node clearance.

The mention of chemo scares the heck out of everyone.  it does suck but probably not as much as we imagine in the beginning.  I did 6mths worth, kept my hair with the cold cap, and managed reasonably well considering.

I had very few problems with radiation as well.

Your treatment may be very different to mine but I just wanted to let you know that you will be ok, you will get through and we're all behind you every step if you need it. One day at a time lovely.

xoxoxoxoxoxo

primek

If you don't have your kit already perhaps pop out and grab a small diary. I found it helpful to keep track of appointments  and I used to write questions in there  (often whilst waiting) otherwise I'd forget  to ask. (Cheap as Chips was a good place to buy them)Try to have somebody with you as a second set of ears and for support.
I also bought one if those fold out files to keep all the volumes of information given to you. I put path reports, bills once paid etc in there. It really helped as I got brain fog really quickly due to the overwhelming stress of treatment and diagnosis and lack of sleep. 

It is very likely they will recommend chemo due to size and nodes. Not definite of course. I found by researching scarf, hat wig options helped keep my head busy on more positive things and made me feel I had some control. Hope all goes well. Kath x

kmakm

Nothing to add to the wonderful words of advice from the cool chicks above. So just breathe, take it one day at a time and hang in there. We're here for you every step of the way. K xox

Prime time

Hi all,
wow! Thanks for your comments and information so quick!

im waiting for surgery to remove the lump so no other diagnosis or treatment plan yet

xx

Eastmum

Do you have a surgery date yet? Or will you find that out at your appointment tomorrow? 

melclarity

Yes, once you get your surgery date, your results will follow, so many different treatments for different diagnoses, so one thing at a time. It is hard, as your Surgeon is only the beginning part, so once you have your lumpectomy you would then be sent to an Oncologist who would discuss your treatment plan based on results if it is necessary. My 1st diagnosis didnt require chemo so I wasnt sent to an Oncologist, but 2nd time I was. 

The beauty is if you forget to ask questions as I was dumbfounded with my Oncologist, he told me to email him, so I went home settled down and emailed all my questions and it was so much better. I was clearer. I did all my appointments alone, because I honestly didn't need the added pressure of worrying about how someone else was dealing with it. Everyone is different. One thing is true though for all, do exactly what fits perfect for you all the way. xx

poodlejules

@Prime time.,so sorry to hear about your diagnosis. The only things I can add are take someone with you, and don't be afraid to let it all out. I always feel so much better after a cry! And don't be afraid to accept help from friends and family , they need to do something to help you get through this. All the best xox

Sister

@Prime time Sorry to hear that - it's hard to hear.  I went in for a partial for a 2.5cm ILC tumour and no suspicious nodes - biopsy came back with 4.5cm, no clear margins and 3 positive nodes so back for mastectomy and further 5 nodes removed.  This also meant that chemo was recommended (4AC & 12 Paclitaxol) which I'm still doing, then rads and hormone therapy as I am OR & PR +.  What your path will be will depend on your path report and you will find out more when you see your oncologist.

As far as advice - all of the above.  Look after yourself and don't expect to be on top of things.  I found that taking someone with me to appointments (my husband) was useful as I would often forget things.  I also jot questions down as I think of them so that I have a list (lucky docs) when I go in.  The other thing I found useful is a zipup 2 ring binder from Officeworks and a heap of clear sleeves and some dividers (the zip means that I can tuck things in there and they don't fall out.  Every document I get goes in that folder and I take it with me to every appointment - that way I always have everything at my fingertips.  (I originally bought an ordinary size binder and fairly quickly had to replace it with a lever-arch type).

Take care and keep in touch with your results.

arpie

All the best for tomorrow @Prime time ... none of us are here by choice - but you will hear the honest truth about all facets of everything here!

SO much good advice already given .....   

If you have any questions - just ask - anything at all - no matter how big or small - those who have been thru it will answer!  

If you want to vent here - do it.  Most of us have dropped the bundle  now & then & burst into tears (mine was a relatively small thing that set me off - but it was on the first day of rads - it appeared absolutely GI-NORMOUS & I just couldn't stop crying for a few days!)

Maybe take your phone with you & ask if you can record the meetings from now on with your health professionals - most of us can't remember EVERYTHING that's been said - it is a handy way of keeping a record!    

In the mean time - just keep doing what you love doing ...... try & keep busy - so the brain doesn't go off on it's own tangent!  

  Thinking of you xx

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