S E QUEENSLAND SUPPORT GROUPS
If YOU live in SE Qld from Northern NSW to Mackay I have compiled a list of face to face support groups. I started local support group on the Gold Coast back in 2019 and we now have 630 members - We opened our support group to include Ovarian due to the BRCA gene then gradually to ALL cancers for women on the Gold Coast. We have Local leaders in each postcode/suburb and TYPE Leaders for each cancer so there are a lot of events and we have even got FREE exercise classes now three times a week at Palm Beach, Coomera & Southport. Also aqua classes ($5) but have a great support TRIBE where we BUDDY newcomers to the group and have ladies sewing and making PORT/Seatbelt cushions, bags for BFF Ponchos we deliver to ladies having mastectomies, and have hospital visit fairies who visit our lovelies in hospital and take one of CARE PACKS with ear plugs, sleep masks, hand sanitiser, tissues, hand fan, cool towel, chemical free deodorant, cleanser, and other toiletries and skincare, stress ball for exercise arms after breast surgery, non-slip socks, a journal and pen and mandala colouring KIT, hand crocheted Worry Worm and other items when donated. We also have a lot of WIGS & Headwear we loan to our members, and handy items like wheelie walkers, shower chair, wheelchair etc. We will have our website working by Wednesday https://wcsgc.au and will have our interactive LIVE calendar working then too.101Views2likes3Comments
Hi
Hi all - I'm a newbie here - have just been diagnosed with TNBC - struggling to get my head around it............I went to the GP about 6 weeks ago with a scratchy throat and some swollen glands - he ran some tests and ordered a chest x-ray - chest x-ray showed emphysema 'oh and btw you have a lump in your breast' - had a partial mastectomy 10 days ago - pathology came back triple negative grade 3 - next stop oncology..................feeling a little overwhelmed...........1View0likes9Comments
Just diagnosed
Hello All, I have just been diagnosed with TNBC. I had a lumpectomy a few weeks ago followed by a sentinel node biopsy and re-excision margin on Monday. It is comforting to see I am not alone in all of this. I go back to the Breast Surgeon on Thursday for the results and yes the waiting is the worst for me, my husband, family and friends. It is so helpful and reassuring to read positive information and from this I have kept positive and will continue to do so.........so thank you all!!! Jo1View0likes3CommentsWorking my way to being informed
Hi, Its probably time to introduce myself, I've been lurking around for a few weeks gathering information to help me cope. I was diagnosed with TNBC a few weeks ago, luckily the tumor was tiny approx 4mm and hadn't spread. I still chose to have chemo (4 cycles of TC) followed by radio therapy to minimise the chance of it coming back. I handled the surgery pretty well, not surprising given the tumors size and I start chemo tomorrow. So far the worst part is waiting. I combat it by finding out as much information as I can. That's my training and my profession. I've seen a lot of warnings about Dr Google and if I have time I'd like to collect some links to help members who don't have my background to improve their information literacy - these are skills that help you sift the good from the bad. I'll say thanks to everybody who's posts I've read so far - it has really helped me! Simone1View0likes3Comments
Trials
Hello there lovely Triple Negative Sisters. Has anyone here been involved in clinical trials during their treatment ? There seems to be a lot of press about PARP inhibitors and I wonder what your knowledge of them are. I live on the Gold Coast, how many others live in SE Queensland? Who would you recommend to see about new treatments, if any. I am getting the standard FEC and Docetaxol but want to know if there is anything out there to reduce my chances of recurrence. What was everyone else regime? I've also read about studies involving Metformin, platinum drugs and feta blockers . Any thoughts. Mandyxx21Views0likes25Comments
Just thinking
Hi I'm new to this site and even though I'm 18 months post cancer, TNBC grade3 stage2 small lump <1cm 1/2 node+ 6 × 3 weekly chemo FCE100 31 rads over 6 weeks, came out the other side feeling great relief and life is again good, with the exception of the occaisional thought of this disease returning. I know the stats look promising, out of 100 people 75 will survive 5 years, so my onc said, however after reading about stat, they include all cancers and I was just thinking that only 15>20% have TNBC so how many of these 75 are triple negative.1View0likes1Comment
10,000+ members!
I would like to post about my story, how BCNA helped me, and how I try to give back some of the wonderful support I received. Despite regular mammograms and ultrasounds, I found my lump in the shower last year. It was a large fast-growing mass, and a core biopsy showed high grade malignancy, suspicious for lymph invasion. My GP immediately referred me to a breast surgeon, and said to walk there now, and hand the referral in personally. I did, feeling as though I had been hit by a train. After the longest Easter break ever, I saw the surgeon. Because there was some family history, we decided on a bilateral mastectomy to take place 4 days later. This when I first went to the BCNA website, and the women there inspired me with their strength and their courage. They responded with so much support and advice I will forever be grateful. I was being strong for my 4 sons, all grown, but who always thought I was immortal, and for my husband, who is a positive-thinker and always my rock in any storm. We both took a very positive approach from Day 1 – it is what it is so let’s deal with it! My tumour was 3.5cm with no node involvement and clear margins. But it was Triple Negative and Metaplastic – a nasty little bug. My surgeon referred me to my Medical Oncologist, who started chemo 3 weeks later, first implanting a portacath for the 12 weekly infusions. The time passed very fast and apart from a few aches and the expected fatigue, I came through well. It was decided to do 28 radiation treatments, and then a hysterectomy. It all flowed from one thing to another with impressive efficiency, and suddenly it was all done. I will be forever grateful for my multi-disciplinary team here at Premion Place on the Gold Coast. They were absolutely wonderful. Throughout the whole journey I was in contact with my pink sisters on BCNA, and their unfailing support was the glue that held the whole thing together. Since then I have regularly contacted newbies to the site, who were as frightened of the unknown as I was before them. Together we have all become more informed, held each other’s hands over rough spots, and spread love and support wherever it was needed. Words could not explain how much the site has meant to me, and still does. Happy Christmas everyone – we are still here and we are still fighting – love to you all, Michelle xxx2Views0likes6Comments
TNBC newly diagnosed
I am a 66 widowed mother of two daughters and grandmother of 6, 3 beautiful girls and 3 very handsome boys who lives on the NSW South Coast. My story is probably very similar to everyone on this site. Last month I found a lump in my breast, not the normal pea shape people tell you about but what felt like muscle to me. Went to the doctor and the next day she sent me for a barrage of tests and a meeting with a doctor who became my mastectomy and axillary clearance surgeon the following week. It was like a whirlwind, one that I had no control over yet I felt remarkably calm all throughout which scared the hell out of me. I am diagnosed as Triple Negative, T3 N0 M0. WOW a whole new language to learn, one that I am slowly learning. Now as time goes on and I have time to think, I am finding that I am getting scared over what I understand will be a very aggressive round of chemo. I have yet to meet my oncologist but my surgeon has told me that is probably what I can expect as the tumor was very aggressive. I would like to know if this is what is going to happen is there anything at all that I can do prior to chemo or during chemo that will help me. I would also like to meet others who are available to share their stories over a coffee in the Nowra area and surrounds.1View0likes9Comments
triple negative information evening
Hi Everyone I have found this site good and did not realise there are so many of us with tnbc. We have a face to face group that meets for coffee once a month at Chandler in Brisbane. We are hosting a triple negative bc information evening with quest speakers Paul Mainwaring oncologist and Chris Pyke Surgeon They will speak exclusively about Triple negative with time given for questions. This is a gold coin donation event, on 30 July 2013. Contact Lynda Kendall to book seating 0403 247 887. We also have a webpage here on the bcna site.1View0likes3CommentsStaying positive
First of all, thank you to all the women who have posted. This has been very helpful in understanding what is going on as general research has been scary so I am constantly uplifted by the stories I have read from these brave, strong women. I also have stage 3 tnbc, have had lumpectomy and going for my second chemo today. Had a really rough time over the last three weeks with plummeting neutrophils and complications from recently diagnosed diverticulitis which combined put me in hospital for a week. I am 43, no children, and live remotely so have had to relocate to cairns to be closer to hospital for this next round. Have had just a little nausea, thank goodness, but the fatigue and bone pain and gut pain has been intense and have only had a couple of good days leading up to my next treatment. If there is anyone out there in far North QLD who also has tnbc would love to hear from them...I feel very far removed from anyone else with this. Thank you again for posting, nice to know am not alone.1View0likes12Comments
S E QUEENSLAND SUPPORT GROUPS
If YOU live in SE Qld from Northern NSW to Mackay I have compiled a list of face to face support groups. I started local support group on the Gold Coast back in 2019 and we now have 630 members - We opened our support group to include Ovarian due to the BRCA gene then gradually to ALL cancers for women on the Gold Coast. We have Local leaders in each postcode/suburb and TYPE Leaders for each cancer so there are a lot of events and we have even got FREE exercise classes now three times a week at Palm Beach, Coomera & Southport. Also aqua classes ($5) but have a great support TRIBE where we BUDDY newcomers to the group and have ladies sewing and making PORT/Seatbelt cushions, bags for BFF Ponchos we deliver to ladies having mastectomies, and have hospital visit fairies who visit our lovelies in hospital and take one of CARE PACKS with ear plugs, sleep masks, hand sanitiser, tissues, hand fan, cool towel, chemical free deodorant, cleanser, and other toiletries and skincare, stress ball for exercise arms after breast surgery, non-slip socks, a journal and pen and mandala colouring KIT, hand crocheted Worry Worm and other items when donated. We also have a lot of WIGS & Headwear we loan to our members, and handy items like wheelie walkers, shower chair, wheelchair etc. We will have our website working by Wednesday https://wcsgc.au and will have our interactive LIVE calendar working then too.
