Forum Discussion
The Foxs Lady
I'm feeling very isolated as a TNBC in my area.
To my knowledge there is one other (a recent diagnosis who is now going head long into intensive treatment).
I have physically met three survivors.
I know that there are more out there but I find women with hormonal breast cancer have no concept of TNBC.
Looking forward to connecting with others...........
I was diagnosed grade 3 stage 3.
66 Replies
Hi Jo,
My GP sent me to a physician as I had unusual changes in my blood tests and was also also short breath, had fluid on my ankles and hands and had chest pains. I has lots of tests ECG, Cardiac Ecco and MRI of my heart.
Hope this helps I think you should get it checked out. Good luck. Catherine
- Hi Catherine, similar stories, unfortunately. I too have developed osteoporosis but instead of medication my GP gave me an infusion that will last for twelve months. I had a reaction to it like chemo, and when I researched it, it is a chemo drug. I had three fractures in my legs in three months. an ankle, then both knees. I have terrible shortness of breath, exhaustion. My mum had heart disease and I'm beginning to wonder if I have some damage there. How did they test for your heart problems? I keep waiting for things to improve, I hope they do for you to,. just some semblance of a normal life would be appreciated. I have yet to go down the reconstruction side, too busy fighting all the other things that happened after treatment finished. Jo
Hi I also live in Adelaide and would love to meet some TNBC ladies!
My story is in short, I was diagnosed with TNBC in Feb 2011, underwent mastectomy then 6 cycles of chemo. I then discovered I am BRCA 1 positive so underwent hysterectomy and removal of ovaries, then has other breast removed with expander reconstruction.
Since then I have developed decreased bone density withospeoporosis which I have to take medication for. The chemo also damaged my heart so have ongoing issues there.
I am now having surgery this month for the aneuysm in my brain. Luck me.
Some days I feel like I can not win.
Love to meet some other TNBC ladies in Adelaide
Love Catherine
hi Leanne
All the best on 30th when you have implants. Thanks for the advice I will let the nurses take charge. Hopefully there will be a time when we can catch up.
Sandi (smead) xoxo
Hi Deanna, sorry it has taken me so long to respond I'm not very good with the social networking thing as yet. Great to see that you are a BC survivor, it gives me hope. I may be able to catch up with you sometime in the near future, still having chemo at the moment, 2 more to go and radiotherepy for 6 weeks. My older son is just about to move to St Marys so I maybe up that way from time to time. Not sure how to request you as a contact, so if you know how maybe you could request me for future reference. Debbie
Hi Deanna, sorry it has taken me so long to respond I'm not very good with the social networking thing as yet. Great to see that you are a BC survivor, it gives me hope. I may be able to catch up with you sometime in the near future, still having chemo at the moment, 2 more to go and radiotherepy for 6 weeks. My older son is just about to move to St Marys so I maybe up that way from time to time. Not sure how to request you as a contact, so if you know how maybe you could request me for future reference. Debbie
My temp had dropped when I arrived at hospital, I was wearing a pain patch, because of the injection in the stomach on day 3 which was to build up the w/b cells, they still keeped me there and did blood cultures. So where are you up to with your treatment now? Deb
Sorry to be slow - just saw your question. After discussions with my breast surgeon (and a family history) it was my decision to have the double mastectomy, and my surgeon agreed - but it was my choice. After chemo, my Oncologist explained that tnbc usually recurs in the soft tissues, and recommended the hysterectomy as I had already had a large cyst and an ovary removed a few years ago. He also recommends regular colonoscopies. I am now promoted to 12 month checkups and in remission. Wishing you all the best. Michelle x
Yes I think of the IF in capital letters. I try to look after myself. I am doing more exercise than I ever have before. I remain overweight. But I am trying. Maybe I will be lucky and maybe the IF will never happen.
I make compromises and I live for now. I am planning the dream holiday but it can't happen for almost 2 years because my son will do the HSC next year. Family is everything to me; my health and their interests have to go hand in hand.
I do what I can. I am sure I will be here for some years to come.
Yes I think of the IF in capital letters. I try to look after myself. I am doing more exercise than I ever have before. I remain overweight. But I am trying. Maybe I will be lucky and maybe the IF will never happen.
I make compromises and I live for now. I am planning the dream holiday but it can't happen for almost 2 years because my son will do the HSC next year. Family is everything to me; my health and their interests have to go hand in hand.
I do what I can. I am sure I will be here for some years to come.
