Triple Negative Diagnosis
Hi there, I'm new to this community...and the cancer journey. I am a 39yo school teacher with two beautiful young children (4 and 2yo). I am halfway through five months of chemo with surgery and radiotherapy to follow... I was hoping that I might find other TNBC ladies on here to connect with, as I navigate the side effects and potential prognosis that a TNBC diagnosis brings with it. I am interested in hearing how other women are being treated with this diagnosis - as there isn't really much 'new' in the space of TNBC with trials and the like. I am being treated by Rick De Boer in Melbourne (St Vincent's Private). It's a big, bad and scary term - but luckily for me I am not metastatic. I had to advocate for myself after initially attending and being told it was 'just' a cyst. I was told to repeat the ultrasound in 3-6 months. Two weeks later, I was in pain and felt the rapid change; the tumour had double in size and was now a grade 3 tumour. I thank my assertiveness every day for returning to the GP. Reading through others stories, I am shocked that in 2023, women are still being missed and not offered biopsy in the first instance. I now know that the only way to truly diagnose a lump is through pathology. Lucky for me, I had pain in my boob (another misconception...'breast cancer is not normally painful'). Looking forward to connecting with you all. Elise x
New Group - Triple Negative Breast Cancer (TNBC)
Hello members, If you have been diagnosed with triple negative breast cancer (TNBC) or supporting someone with this breast cancer type, you may have asked whether we have a private group available for people. Currently we do not have a dedicated group, however there appears to be growing demand for this and we want to create the conversation: Please provide feedback as to whether you feel you or someone diagnosed with TNBC would benefit from having access to an Online Network private group (Please leave your comment in this discussion thread) What is Triple Negative Breast Cancer? Triple negative breast cancer is the name given to breast cancer that is: oestrogen receptor negative (ER-) progesterone receptor negative (PR-) and HER2 negative (HER2-). This means that the cancer does not use oestrogen, progesterone or HER2 to grow. So this means that drugs used to treat these types of breast cancer are not effective for triple negative breast cancer. Around 15% of early breast cancers are triple negative. The main treatment for triple negative breast cancer is chemotherapy. It is important to know that chemotherapy can be very effective in treating triple negative breast cancer. While anyone can get triple negative breast cancer, it is more common in people who: have an inherited BRCA gene mutation (particularly BRCA1) are under the age of 40 have not reached menopause. Unfortunately triple negative breast cancers tend to be more aggressive than other types of breast cancer. There are several sub-types of triple negative breast cancer, the most common being, a cell type called basal-like. Basal-like means that the cells resemble the basal cells that line the breast ducts. Basal-like cancers tend to be more aggressive, higher grade cancers. Read more via the My Journey article Triple negative breast cancer
TNBC diagnosis - pregnancy related
Hi everyone. I was diagnosed 11 November 2020 with TNBC, 10cm tumor in my right breast, no lymph node spread. Specialist says that if it was graded it would be between a 2 & 3. I was 36 weeks pregnant when I noticed the small lump, which would have been in May. My baby girl was born early July. Didn’t think anything of it until it became uncomfortable due to its rapid growth. I breast feed my baby until I had to start chemo on 25 November. Just wondering if anyone out there has had the chemo, surgery and then radiation? I’ve had my second last chemo today and surgery is set for end March. It will be a mastectomy and an expander inserted under the pectoral muscle. Implant will be at least 6 months after this. Oncologist said there may be follow up chemo tablets after the radiation dependent on the pathology etc at time of surgery. Just wondering if anyone out there has a similar story?
What’s next
Hi , was just wanting some guidance on what happens next as I keep forgetting to ask when at appointments. So I was diagnosed with triple negative back in jan 2018 had a lumpectomy with clear margins and clear lymph nodes have had 4 lots of AC and now upto week 5 if my 12 week paclitaxel and once that is finished will have radiation but what I want to know is when that is all finished will I have more scans etc to make sure that all the nasties have definitely gone . Sorry If this question seems silly xo
Recent Research on Chemotherapy For Triple Negative Breast Cancer
I was wondering if anyone knew how to access the recent research from Europe which advises that women who only had 6 cycles of chemo only survived up to 5 years after original diagnosis and women who had 8 cycles of chemo survived 10 years plus? I'm trying to get a copy of this research to read as my oncologist has told me I now need to do 8 cycles of chemo instead of the 6 cycles he originally told me. Apparently a study was done on women who had Triple Negative Breast Cancers.
Capecitabine side effects - shaking and feeling weak
I am on 4th cycle of capecitabine, (had locoregional recurrence, surgery, radiation and now chemo), I have new symptoms and want to know if I should push through and complete the cycle or if I should stop early - and of course it is the weekend and I can't get on to my normal oncology nurse to ask. I called local hospital emergency dept - they said that they have no idea about chemo drugs - if I run temperature or collapse get my husband to bring me in - but otherwise try to stay away so I don't pick up infection, unless I can get onto an oncology nurse for advice. They suggested I call palliative care nurses who might have more experience with chemo drugs and their side effects - but both the numbers just go to messages saying due to illness of nursing staff there is no palliative care service operating. So while my temperature is ok I have the shakes and feel really weak. This is 4th round and is lower dose than last round (dose was dropped because of hand and foot syndrome causing blistering on soles of feet). Anyone on here know if shaking and feeling weak are side effects for capecitabine that will go away or if they are something more serious and I should this stop cycle early - I only have one more day of this cycle to go.
Newbie
Hello everyone, I was diagnosed a couple of months ago (triple negative grade 3 stage 2), I am 32, I have a 2 year old and a 5 month old. I have had a lumpectomy and 3 AC chemo so far and the side effects are starting to really hit me and I thought it'd be nice to be able to discuss it all with people who understand what I am going through! I have never been part of a forum before so I hope this is a good start! :smile:
Memorial Sloan Kettering Cancer Centre
Hi everyone, There is a live video on Facebook of one of the top oncologists from this hospital answering patient's questions. He talks a bit about TNBC which is quite encouraging & immunotherapy. America really are at the forefront of this. They also have an app you can download on herbs which are safe or not to take when having treatment or generally.
THREE YEARS AND STILL HERE!
Hi everyone, Just wanted to stop by and let you all know that it's three years today since I was diagnosed. WOOOHOOOO! I remember that knowing other women had survived was so important to me during the early days of treatment. I've recorded the whole experience on my blog at https://positive3neg.wordpress.com I've just posted a piece about my three year anniversary and I've also put it on this site under my general blog. Best wishes to everyone here. Please know that behind the 'shock horror' headlines that surround triple negative breast cancer there are increasing numbers of us that are living well and living past the critical three year mark, when our risk drops substantially. For those that don't already know, when we get to five years our risk returns to the same level as the general population (and that's about the only good thing about triple neg when compared to the other breast cancers but it's a pretty big positive!). Love and light to all of you. Meg
ah the relief 4 year review was good
Hi all, today I have my 4 year review with the Oncologist it is great to walk away with another all clear and see you in 12 months time, as each yearly review looms I do become anxious. don't we all? He said that as I am Triple Negative the fact I am 4 years out now is very positive as generally recurrence in TN is within the first 5 years with it decreasing each year from diagnosis. I just want to encourage those who are newbies that we do get through this journey step by step sometimes it not easy but there is a light at the end of the tunnel. Have a great day hugs to those who need them and energy to keep fighting for those in the midst of the fight. Soldier Crab