Discussion & tips

Kkbbth

hello fellow peeps, 

I am a kick ass 34 yo woman who was diagnosed June 7th with stage 2 BC in my left breast & lyphnodes. I’ve had a double mastectomy June 18th and now I’m awaiting to have IVF then Chemo, hormone and radiation therapy. 
Im healing well, had my first infill into my expanders and basically feel like things are moving fasting than me currently. 
My biggest concern to date is navigating the system. I self funded my surgery in the private system and now seeing the same surgeon in the public system but I’m yet to meet with or been given the information about my next stage... chemo and hormone treatment. I find that I am very proactive in my journey however it’s hard what to ask, research when you do not yet know what you need to know. 
I have sourced a fabulous practitioner that specialised in Lymphoedema & prevention - this was something I found was not mentioned at all during my surgery or hospital after surgery. 
What are people’s thoughts about prevention, protective garments and asking for blood tests in the feet rather than the arms now lyphnodes have been removed? 

Any tips are welcomed... so glad to have this site & peeps to support and be supported. 

Kharj

kmakm

Hello Kharj. Welcome to the forum. Sorry you find yourself here but I hope you find it as helpful as I have. Good you you for your kick assery! Awesome!

Your info about chemo and hormone treatment will come from your oncologist. Your breast surgeon and/or GP will refer you to one. Have a chat to them and see what they say.

Keep up the good work! K xox

Kkbbth

Thank you K 
ok great, an Oncologist .. I will be sure to ask next week at my appointment with the nurse for my drain removal.

Sister

Hi Kharj, As @kmakm said about the onc - your surgeon will refer you to one if he/she hasn't already done so and to a rad onc as well.  You may have a portacath suggested to you - it's a device that sits under your skin (usually on the chest) and is hooked into a major vein (superior vena cava).  For me, it was day surgery under general to put it in and will be removed under local but I believe some have had it inserted under local.  It means that for all of your bloods and chemo treatments, they just punch into this - easier and it saves your veins.  Personally, I hate mine and can't wait for it to come out, but I've appreciated having it during treatment.  You may also want to find out about cold caps, if they're available where you're going.  I tried and decided it wasn't worth it after the first couple of treatments but others have had great success.

Lymphoedema does seem like a bit of a dirty word, doesn't it?  For me it was mentioned briefly and then never again.  It's important to do your exercises religiously but sometimes that doesn't help enough.  I've been lucky enough so far not to develop it but I have had bad cording which can lead to it.  I go to a specialty laser therapy and lymphoedema clinic which, of course, is not cheap, but has done a lot to free up my movement in that arm.  They take baseline measurements as an early warning mechanism for lymphoedema and also fit for compression garments if necessary.

You'll find some of these topics mentioned in earlier posts - I certainly put up a lot of questions around that time (Feb) about specific things such as what to get for chemo, ports, cold caps... and got a lot of really useful answers.

onemargie

Hi there @Kkbbth. Welcome to the forum sorry youve had to join us. there is plenty of support on here for you whenever you need it.  I had stage 2a grade 3 (3cm tumor) triple negative breast cancer May 2016 aged 43 in the left boob no lymph node involvement. Had a double but still waiting for my recon I also had 8 rounds of chemo. If you give us some more info about your diagnosis you can get more info from the crew on here. Your surgeon will definately refer you to your oncol. Where abouts do you live ?  

But did you say your having IVF prior to your treatment ?  Is that to save your eggs for after your chemo?

And normally it’s your oncologist that lets you know your trestment plan?  Or Is that what your surgeon has told you.?  How many lymph nodes were involved, how many did you have removed, exactly what type of bc do you have? Do you have a family history of breast cancer?  And As you are under 50 you may qualify for the BRCA gene test. Have you got all of your results yet?  All this will help us to help you with all the questions you will have. 

Amd good to hear you’ve found a specialist to help you with the lymphodema prevention. Not everyone who has the lymph nodes removed gets lymphodema so you can discuss preventative measures with them. Ask your gp about getting a care plan to help cover the costs of the lymphodema physiotherapist you can get up to 5 visits per calendar year for this. There are a lot that don’t have out of pocket expenses for their services and are happy to bulk bill with the care plan referrals. 

As for your your blood tests I’m assuming you had the right boob off as a preventative measure.? and didn’t have any nodes removed from that side? If that’s the case you can have blood taken from that side no problems. I have also had blood taken from the left affected side with no dramas but I don’t have any lymphodema either. It’s not routine to take bloods from your feet. 

If you do have chemo you can have a portacath inserted and the hospital can take bloods from there if needed.  Depending on your type of trestment will also depend on how often you need to have bloods done. 

Also prior to treatment your oncologist will most likely ask for you to have an echocardiogram of your heart and full body scans and maybe also a bone scan. These can be routine requests but can vary depending on your oncologist . Try not to think too far ahead. It’s really a day at a time thing until you see him or her and get your exact plan of attack with what type of chemo you will be having and how often. 

If your breast cancer is hormone receptive which it sounds like it is if you’ve had your results ?then you will also need to talk to your oncol about your IVF treatment too.  There have been ladies on here who have had chemo while they are pregnant so I’m sure someone will be able to help you with advice on any IVF questions you have also.  

Have you joined the young women’s group here on the forum?  That might be a good place to get advice too. And you definitely need to have a kick ass attitude to get through this. Sounds like you’ve got that covered which is great. Make sure you delegate if you need too and accept help of it’s offered and try not to google if you can help it as everyone’s treatment Is different and this varies so much between all of us. And You don’t have to be Wonder Woman through all this ok. I hope you have a supportive partner and family around you too. Rest assured you can kick bc in the balls for sure. Big hug. Margie xx 

iserbrown

@Kkbbth

Some of this information you may have already sourced but if not here you are:

Our @SoldierCrab has put this list together - I hope it helps you to understand where you are at and to get resources to help you

Below are a couple of links to help you find your
way around the forum and also how to find a breast care nurse and how to order
a MY journey Kit if you haven't got one yet. 

It can be a whirlwind when we first get a
diagnosed.... Breathe and take it one step at a time. 

The what and how thread.

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

Breast Care Nurses

https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

My Journey Kits and other
resources. 

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

BCNA Helpline 1800 500 258

If you have any questions, concerns or require any further information
or support please call 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.

 

 

How to understand your pathology reports

https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology.html

 

This link you can click on the type that matches your diagnosis and hopefully gives you a better understanding and helps with questions or to formulate questions for your next visit

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

Take care

Kkbbth

Thank you ladies great information for me to take on board. I really appreciate being able to hear from you guys. 

I know I should probably take it one day at a time but I need to know my options and their impacts. Guess it’s just the type of person I am lol. 

The portacath sounds brilliant for giving my arms a break...yes I have had a double mastectomy, right side breast with two Timor’s <2cm and spread to right side lymph nodes found one Tumor. So I had 6 nodes removed from my right arm and the sentinel node removed from my left side but left side is cancer cleared. 
Now im worried about having to be carful with my arms... bloody shithouse lol this cancer bomb keeping snowballing into multiple complex layers... I’m still laughing tho cause it’s how I roll... but can’t gelp but feel a tad ripped off lol. 

I am not entirely 100% of my diagnosis yes they have told me along with 1000 other things. But I do know I am ER & PR positive but Her2 negative. 
I live in Southport QLD. 
Yes my surgeon told me about my chemo, hormone and radiation. He is part of my multidisciplinary team at Robina public treating me. I really love him, so good, straight to the point confident in all executions plus caring bedside manner. 

I have begun my IVF treatment to preserve my eggs before chemo that surgery is in a few weeks. 

I would prefer not to have any bloods taken in any of my arms but if feet ain’t popular then I will until I get the portacath put in. Do my exercises get compression gear and be careful & prey until then. 

Ok how how do I join the young women discussion groups too? 

Can i I just say god this forum is heaven sent, I’ve seriously felt super isolated since this began and having strong women assist me with explaining this process to me really makes me feel connected. 
So thank you again. 

Hope you guys have a great weekend

kmakm

We're all here for you Kkbbth. You're never alone. We've got you and you've got this. K xox

iserbrown

http://onlinenetwork.bcna.org.au/group/10-young-women

Click on this link - there is a join button on the right hand side - fill that it and send and someone will come back and let you know you can have access

kezmusc

Hey @Kkbbth,

Welcome.  You've had some great info from everybody already. 

 I had full axilliary clearance with 5/24 nodes positive.  ER PR pos Her neg.  I have never needed to use any preventative things on my arm.  I just did my exercises religiously plus more.  It has been 18 months since my surgery and I have zero problems with lymphodema and full strength back in that arm for a long time.  It does make you a bit protective of it at the start I know but that will wear off.

I did my chemo without a portacath all infusions and weekly blood tests done in the other arm with no real issues. However there was no surgery to that side.

The chemo appointment is pretty daunting and scares the heck out of all of us.  Keep in touch. We all "get it".

Your kickassery (love it) will help you through.

xoxoxoxo

Kkbbth

Oh some great links thanks you!! 

Oh oh that makes me feel much much better... I’ll do these bloody exercises then lol. Yes I’m sure I’ll have more daunting information to come... thanks for sharing all your guys info x x I’m feeling better already