First post
Hi everyone. Just a quick note to say hi and introduce myself. I was diagnosed 22 Jan, Triple N inv ducal carcinoma and have only found the courage today to post. i had my surgery last night and am happy to be moving ahead with my therapies. Psychologically feel great that “the thing” is out. Results will be back in 3 days.
Triple Negative Breast Cancer Survivor
I had Triple Negative Breast Cancer diagnosed back in November 2012. Now after all the treatment and appointments, specialists and monitoring, I am still here and so far so good. I don't regularly came onto the BCNA Website now, however I was a prominent visitor for the year of 2013, for those who recognize my photo. After all the successful ops, chemo and rads, we moved to Sydney and been here for 2 years. I had taken a year off during my Cancer and it was necessary. The return to work was difficult and I went back part time. My brain was like mush originally and my work place tolerated me with kindness. I returned as a Pharmacy Assistant, and stepped into a very busy work place here in Sydney, but still working only 4 days a week. They have given me zero responsibility and menial tasks. I was upfront the week before my 6 months probation finished, about having had Cancer. I was called in for the Familial Genetic blood test, and discovered there was no connection. They just put it down to "Environmental". I have learnt that people who have not had Cancer don't understand what it is and have short concentration spans if you try to involve them. The ongoing health situation, or physical ailments you may get are also something people have no idea of and little tolerance for. I am healthy and learning to play Golf in a Clinic - and enjoying the challenge. My right arm is not over the moon about it, (underarm and elbow, with slight discomfort), but I simply just go through each day now as though Cancer never happened. Although it is always at the back of my mind. It is the yearly monitoring and weekly checks that keep me real. Survivor Belinda McKenna
Grade 3 Triple Negative
hi!! I just wanted to say my first hello and what an amazing place this is to come for loads of wonderful advice and info!! I was diagnosed on 6th Nov with Grade 3 Triple Negative IDC and am having a double mastectomy with reconstruction next wed 4th Dec. I’m a mum of 3 (19,16 & 7) and had only just turned 40 when I experienced a sharp pain in my breast and went to have it checked. No staging as of yet, I had one swollen lymph node biopsied which came back clear and CT was clear apart from pre existing liver hemangiomas (just something else to add to the mix) but still waiting on bone scan results.........if that isn’t the most anxiety endusing thing on the planet I don’t know what is, Ive been hyper sensitive to every ache and pain I get!! Chemo is planned for the new year. Anxious but eager to get into it, all the waiting is the worst 😣
Triple Neg.. Good News
It’s been a while since I last posted last post I was going through my first round of A/C and in hospital with Neutropenia well I ended up in hospital 2 more times after that but luckily nothing to serious. July 3rd I went for my lumpectomy and sentinel lymph node removal (3 in total) all seems to have gone well although still a little tender. on the 14th of July (yesterday) I went to see my surgeon and I’m pleased to say I had a full pathological response to my chemotherapy. Clear margins and clear lymph nodes. Radiation is still happening but that’s ok. I see this as a positive thing. I am so pleased with my result and wanted to share my good news in hope it bring’s hope to others with triple neg like myself but also to other fellow breast cancer fighters out there I know that I have a long road still ahead of me to be classed as a survivor but it’s a bloody good start and I’m going to enjoy every milestone that brings hope. peace love and best wishes to all x
UK trial
A trial is being conducted in the UK using aspirin as part of treatment for triple negative breast cancer. The article emphasises the trial and methodology is still at an early stage and people should NOT start using aspirin themselves! Trial lead Dr Anne Armstrong said: "Not all breast cancers respond well to immunotherapy. "Trialling the use of a drug like aspirin is exciting because it is so widely available and inexpensive to produce. "We hope our trial will show that, when combined with immunotherapy, aspirin can enhance its effects and may ultimately provide a safe new way to treat breast cancer." Co-researcher Dr Rebecca Lee said their lab findings suggested that aspirin can make certain types of immunotherapy more effective by preventing the cancer from making substances that weaken the immune response. "We hope aspirin can dampen down bad inflammation so the immune system can get on with the job of killing cancer cells," she said.
Triple Neg, diagnosed 4 wks ago, have had 2 cycles of AC chemo - I wonder what has happened?
Hello, I am not sure how to introduce myself, as this self, is new to me. I feel I havenʻt had time to prepare or make sense of who I am when I look at self. An experience, I have walked into or more precisely, I am on a treadmill of some sort and someone has yanked it up and I canʻt keep up. Emotions running havoc. I am very grateful for support services such as this and give thanks to the community of people who reach out to help each other. For those who read this, thank you.
Immunotherapy trial
Just to keep you all updated who are not on our TNBC FB page. I am living with Mets to my bones and 3 weeks ago was diagnosed with liver mets. I am extremely fortunate that my oncologist is so onto it and I was enrolled in an immunotherapy trial the day I was diagnosed (that coincidently opened the following week). Monday of this week I found out I had been accepted and was in the double arm group. The two drugs are CPI-444 and Atezolizumab. Atezo is a fortnightly IV infusion and the CPI-444 (which I loving pet-named my Star Wars cure) is a twice daily tablet. Both drugs have different actions but in short are turning on my immune system to help fight the cancer cells. On Tuesday of this week they closed the Triple Negative Breasts Cancer arm as it was full so I got into this trial by the skin of my teeth. There have been a lot of uncanny coincidences regarding this trial and I am hoping they all mean I am being looked after and was just "meant" to be on it. It is ground breaking technology for those of us with Stage IV TNBC and so far (and if successful which pre-clinical trials have shown) will be the only targeted therapy for us. I feel so privileged and honoured to be a part of this and already feel like my body is different. I am more active, getting up at 5am instead of 8, less tired and have an achy hip (which is a good thing haha - cannot be more mets cos it was all dug out when they replaced my hip earlier this year). I am happy to keep everyone updated with the trial and how things are going, I have my first diagnostic scan in 3 months and the trial is for 2 years.
Hi everybody
I was diagnosed with breast cancer on 31 January, and found out I was triple negative on 10 February. I'm scheduled to have my lump and some lymph nodes removed on 24 February, and have been told I'm up for chemo and radiation therapy. I know the radiation will be everyday for 5-6 weeks but do they usually start chemo straight away too? Or do they wait till you've recovered from surgery and have the results back? I have pre-admission on Monday 17 Feb where I'm sure they'll tell me but thought I'd ask here as well. Bit of a shock though when I found out, don't think I've processed it really yet because I feel fine. I'm anxious obviously but otherwise ok.
Immunotherapy Atezolizumab (Tecentriq) Metastatic Triple Negative Experience
I just wanted to share my experiences with accessing the immunotherapy drug Atezolizumab (Tecentriq) that is currently not on the PBS (but hopefully will be soon!). In 2017 I was treated for TNBC stage 3 breast and lymph nodes, had 3 amazing years of good health, family and travel, then in March 2020 found an enlarged lymph node in my neck, same side as the BC. It took several ultrasounds (originally diagnosed as a vein) and then a biopsy to find out if was a small 1cm met tumor. I was referred to a trial at Peter Mac, but after testing (PDL1 Positive) found out the tumor was too small to qualify. Then referred to a different hospital for the same trial, waited 4 week for the tumor to grow only to find out the same thing, however was given the option of self funding through the private system. I had at each hospital ask about this, and somewhat annoyed that I was given a rough cost per treatment, not the compassionate deal that the pharmaceutical company was providing - $25K for 5 treatments, then no cost thereafter provide there is a response to treatment. Referred back to my original oncologist who completed all the paper work to the pharmaceutical company (Roche) and my private health insurance, who would be covering my private hospital day stay costs. I was waiting anxiously for my first treatment bill from Roche when my Oncologist called me to say my Private Health Insurance had agreed to pay the full costs (except the hospital excess) of the Tecentriq drug! Needless to say I was overwhelmed by both my private health insurance and my oncologist who completed all the paperwork. I've now had my first full round of treatment (3 weeks on, 1 week off) and can already feel changes in my neck. I don't know how long I will be on the drugs for, or how my body will react, but think it is important for others who may be in the same situation to know that if a drug is not yet available on the PBS, there still maybe ways of accessing it. Just as a side note, the trial I was referred to was stopped as it was using Tecentriq with Taxol and did not show any benefits to Taxol on its own. The previous trial to this for Tecentriq was with Abraxane which had shown a benefit - this is the combination I am on.
