Lupus, CPTSD, Breast Cancer... Oh My!

humblevoicehumblevoice Member Posts: 34
edited September 2016 in Newly diagnosed

Hi everyone thanks for having me here in the group. i have systemic lupus and have been living with it since i was 17 years old. i'm 35 now. I found out last week i have breast cancer from the doctor on the phone because he wasn't in... then i found out from another doctor that i have a "standard garden variety" breast cancer, then i found out that the fine needle aspirant result was compromised because the collectors of the sample damaged it with formalin. and i found out that i actually have triple negative grade 3 breast cancer... so it's been a bit of a rough week... i also got a msg from a girl from uni that i thought was my new best friend saying: "sending you love and light and postitive energy huni! who do i talk to at your placement you're not longer doing so I can do it instead?" then a friend i have been close to since grade 9 so 20 years say: "its facinating isn't it? i mean from a scientific perspective!" about my new diagnosis... 

anyway. i love dancing and singing and recently picked up the ukulele and guitar and i have 2 pet bunnies. i had a another bunny who is still my son in my heart... he died from a rare cancer and i couldnt save him. i'm still in grief of him since he left for the rainbow bridge 2 years ago. now it's my turn. 

i also adore weight training. i started powerlifting mid 2015 and was getting to the point where i could deadlift my own bodyweight (80kgs), and squat 60kgs and bench 35kgs... but now i will have to start again. I also love swimming and horse riding and badmington but don't do those enough...

have a very supportive and loving partner and his mum and my mum. but i havent told my mum yet as i dont want to upset her because she had breast cancer and although have been in remission for 18 years or so has been living in fear... my plan is slowly let her get used to the idea i may have it then to tell her after my surgery when i find out if the cancer has spread. then at least she won't need to wait for results and get stuffed around like i did.

i find out tuesday 1st march if it's spread to the lymphs or bones from all the tests last week and i suppose just go from there. 

thanks for reading and i wish everyone healing energy and a big ol hug :)

liz

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Comments

  • rowdyrowdy Member Posts: 1,165
    edited February 2016

    Hi and welcome to the site.The waiting is sometimes the worst as your imagination can get the better of you. Hoping good results for you on Tuesday xx

  • humblevoicehumblevoice Member Posts: 34
    edited February 2016

    hi rowdy thank you so much. yes the wait had driven me into a very dark place last week... this week i am not going to let it win. thanks for commenting xoxo

  • Michelle_RMichelle_R Gold Coast QldMember Posts: 894
    edited February 2016

    Hi Liz,

    I am so sorry you were put through all that stress with your diagnosis.   To tell you over the phone that you have bc is brutal - it is hard enough with a caring GP who is present.

    There is a great Triple Negative Group on the site, and we all understand what you are going through at the moment.  We are nearly all Grade 3 when we are diagnosed because it is aggressive.  You will find out your Stage (1, 2A, 2B, 3..) when your final pathology results come through.  Be sure to order your My Journey kit from BCNA - it is invaluable.  Also keep a diary from now - you will need it for appointments, questions to ask, info given, etc.

    Being so fit is a huge plus.  It really helps your reactions and recovery.  I had it all - 2 x surgeries, chemo and radiation - 4 years ago and my fitness really helped me to get my life back on track afterwards.  There is light at the end of the tunnel - just take things one day at a time, and don't look too far ahead or it can be overwhelming.

    Friends can behave very strangely.  We have all been surprised at some of the reactions we get.  Your true friends will be there for you.

    I am so sorry your mother has been through bc as well.  Nowadays treatment is so much more advanced.  Keep in touch when you get your results.  We are here for you.  Big hug.  xx  Michelle

  • Yvette66Yvette66 Member Posts: 19
    edited February 2016

    Hi Liz:

    Sorry to hear of your diagnosis.  I was diagnosed TNBC, 2B in October 2015.  Those early days can be some of the toughest.  I found that once all tests were done and I had a plan (neoadjuvant chemo, surgery, radiation) I was able to cope much better.  

    I think being into fitness and training will help you more than you know.  Both mentally and physically you will be more prepared.  You know what it is like to train (even and especially when you don't want to) and you know how to follow a plan.  Those skills will suit you rather well through what lies ahead.  I have eight more weeks of chemo and am still working out rather hard.  I have had to drop things like HIIT but can still do lots of cardio and some resistance.  Everyone is different on how they cope with chemo; I have been lucky to have had minimal side effects thus far.  

    Sorry to hear of how your friendships have gone.  I have had mixed responses personally but only associate with those very close to me at the moment.  It's great that you have a supportive partner; my husband is my rock.

    Best of luck tomorrow!  I hope that answers and a plan will help you wrap your brain around all of this!

    Yvette

  • humblevoicehumblevoice Member Posts: 34
    edited February 2016

    Hi Michelle thank you so much for your empathy... i am not looking forward to tomorrow... but well we all have to face what we don't want to face... i'll go check out the TN group... and i have the pack its just beautiful... thank you for the big hug and the encouragement about getting back on my feet. you are right about treatment being advanced... i gues it is a whole lot of overwhelming since ive found out last week... thanks again for dropping by!

     

  • humblevoicehumblevoice Member Posts: 34
    edited February 2016

    Hi Yvette, thanks for the luck. i will be taking all the luck i can. i know that i'll have surgery this week... surgeon said he's 99% sure it will be thursday. tmrw i'll find out if its spread... i am trying my very hardest to not think about it or let my mind wander into dark places... and having an amazing partner makes me feel so blessed. but having him and the dark thoughts about my future makes me feel like i wish i never met him so i could spare him this journey... that's dark talk but yeah, it's perhaps even more heartbreaking to see him suffer. thanks for sharing a bit of your journey too. i am so happy for you that you had minimal side effects. i wish that for everyone i think... ok i'm blabering on now haha thanks again for stopping by. 

  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,337
    edited February 2016

    Wishing you all the best Liz. You'll be alright, you come from tough stock as your mums already beaten it years ago. Tell her asap. She is tougher than you think and after the initial shock, she will be your best contact even just for a phone call. I found this out myself.

    Sounds like you have a very proactive cancer fighting team getting together already and they will help you get the best most up to date treatment for yourself. Its not a simple thing breast cancer and it takes a little time to get all the tests in and stuff.

    Busy yourself with making your house and pets sorted and rosters done for others to help you with them. I am finished all surgeries and just doing chemo 3 of 4 doses. My house is not the most neat lately but its hanging in there and it will come good when I get back into things. Hardest part for me really is being patient.

  • humblevoicehumblevoice Member Posts: 34
    edited March 2016

    thanks for the advice about telling my mum brenda, i am planning on telling her tonight after i find out my results... it might help me to lift a burnden off my shoulders too so i dont carry this alone. also cheers for the tip about the tests taking time. i guess i've never been through this before so its always a little hard to adjust to a new diagnosis but everything had happened so fast. i was just thinking about the housework today in my place. my partner has been helping the last week as i fell to pieces and it's been helpful but also cleaning up clutter for me feels good too... his mum has offered to help and i have a couple of friends who might be able to help. my mum is interstate... i really hope your last chemo goes well and totally agree about the patience thing... although it's been less than 2 weeks for me and it's seemed like about 2 months and normally i have next to no patience... i will have to work on that. thank you so much for stopping to comment xoxo

  • KaossquidKaossquid Member Posts: 16
    edited March 2016

    Hi Liz - 

    Sending you all the luck I can for your results today.  I'm 39, diagnosed in my 20's with MS, and thought that was bad enough, so to go through loosing 2 babies on the run up to a BC diagnosis last year really did test my limits, I was triple neg, have had my surgery (with all the lymph nodes take and 2 positive), had a port put in (veins to bad for chemo) and now I'm though 2/3rds of my chemo.  It's so completely crappy and overwhelming, I remember feeling so scared with my MS diagnosis and what it meant for my future, in a way I think that experienced helped me cope a little with the trauma of the BC diagnosis - but the waiting and volume of information you're meant to absorb in such a short time really did get to me.  I may have weak genes, and a shocking immune system, but I'm still here, and I'm making the most of every day I do have, especially when I feel good and the sun is shining.

    Take each day as it comes, breathe deep, and it's OK to burst into tears and not always be strong - life just deals us shitty cards sometimes, and friends and family mostly don't get how to deal with it - or you (I've had everything from "I know what you're going through" - never had cancer or any serious illness to other awesome friends who just want to analyse the details of every treatment and the drugs they have me on, because that's where they find their solace, in the detail of the things they hope will fix me.  

    Sending you only positive thoughts and best wishes,

    Hugs

    Leonie

  • humblevoicehumblevoice Member Posts: 34
    edited March 2016

    Hi leonie thanks so much for sharing your story. It sounds actually terrifying what u have been through. People say ohh ur so brave youre so strong but we dont have a choice eh... Just have to keep on living if we can... Its too hard sometimes.. Thank u for the beautiful thoughts and wishes... And thanks again for stopping by xoxox

  • humblevoicehumblevoice Member Posts: 34
    edited March 2016

    Hi everyone... I  yesterday on the ct scan theres 9 or so lesions in my liver... I am done with all this. Im done with crying and im done being strong... I dont know what else to say... I get a biopsy to confirm that its spread to the liver, then go for chemo, no surgery...  

  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,337
    edited March 2016

    Lets hope that chemo can really make a difference. There are so many new chemo drugs coming on for treatment nowadays. Don't give up just yet. xxxx

  • Yvette66Yvette66 Member Posts: 19
    edited March 2016

    Sorry to hear your news Liz!  Please don't give up.  Now is the time to dig in and fight.  As far as your partner, he is where he wants to be.  Do not deny him the opportunity to hold your hand and walk with you through this.  

    It's good that you will be starting straight into chemo.  

    I have been reading several threads about TNBC and long term survivors on breastcancer.org.  Their TNBC is very active and the thread with "Long Term Survivors" is uplifting.  There is also a Stage 4 thread with lots of information and discussion regarding treatment.  

    Here is something I came across the other day about a woman who has had Stage 4 TNBC for decades:  http://www.cancerresearch.org/our-strategy-impact/people-behind-the-progress/patients/brenda-berchtold  

    I find comfort in such stories.  I am also empowered by them.  

    I hope you are hanging in there and that you will start to feel a bit better as your plan for treatment is complete.

    All the very best!

    Yvette

  • KaossquidKaossquid Member Posts: 16
    edited March 2016

    Liz - crappy news, this cancer shit really does suck.  Had my chemo late yesterday and I take hope from all the women I see around me, just like those on this site, who may be battle-weary at times but don't stop fighting, and find laughter and joy in the simplest of things.  Sending some your way right now, 

    Take care, 

    Leonie

  • humblevoicehumblevoice Member Posts: 34
    edited March 2016

    hi leonie thank you for sharing, how did the chemo go? and yes you are so right about keeping on fighting... thanks for stopping by to comment xoxoxoxoxo

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