Woohoo .... I signed off with my Onc yesterday
It is nearly 8 years since my lump was discovered in Oct 2017, Biopsy in Dec, Surgery in mid Jan 2018 .... 4 weeks of radiation & just over 7 years of Hormone Suppressing tablets .... and I am now officially FINISHED with my treatment! I have officially been 'signed off' by my Onc! Back in 2018, I originally started with a male Onc - who didn't really have any interest in treating me - his first question was "Well, what are you here for?" (He hadn't even looked at my diagnosis/surgery/Radiation history!) Then he didn't believe me when I told him of my horrible side effects from the first AI that I was put on! So when he went on leave & I was lucky enough to see his Locum (a lovely Sth American Onc.) She immediately changed me to another AI (after a break of a few weeks) and 6 months later, to a third AI, that I then remained on for the next 7 years! I also swapped over to her at that appointment, and have been with her ever since - she was also my husband's Onc! So never be afraid to ask about changing from one AI to another if you are experiencing nasty side effects. And if you don't 'get on' with your Onc .... consider changing them too!!! 😉 It is SUCH a nice feeling! I thought I may become a bit emotional, but I was surprisingly cool, calm & collected!! My Onc even gave me a big hug & sent me on my way, wishing me all the best! She also said to Stay away from the Regional BreastScreen Buses and continue having my yearly mammogram and ultrasound at the facility that I've been attending for over 7 years now .... I have 100% faith in them. Their specialist Breast Cancer Ultrasound operator is the BEST - and I've been able to request her on all my visits so far & will continue to request her on my upcoming scans! hehe, I also had to confess to her that I had started weaning myself off the AIs from about Xmas .... as I was going to WA in May/June for a big Kayak Fishing Adventure ... and I wanted to be totally 'pain free' for that - and she said WELL DONE!! (Technically, I should have stopped taking them after 5 years, but I had requested to stay on a bit longer for the extra 18 months as 'backup'!) At the time, she said there was no medical proof to show that an extra 2 years would either benefit or hinder me - so said I could. So, I was not surprised when she was not at all concerned that I had finished a bit earlier. 🙂 (But I'd like to point out that you REALLY SHOULD discuss any change in taking your meds with your Onc before doing so!) I also left her with some information on the Otis Foundation, to pass on to the local Breast Care Nurse - Otis is a wonderful philanthropic organisation that organises the use of various Holiday Houses (donated by members of the public, many of whom have had family members with BC.) There are 'retreats' (as they are called) all around the country and they are made available from a few days to a week, to Breast Cancer patients for no fee. You just have to 'get there' and bring your food with you. All bedding etc is supplied. Some places are pet friendly - most aren't! You can also take family members and friends with you for the well deserved break. Your Onc/Breast Care Nurse/GP just needs to sign a form saying you are 'up to it'! Jump onto this site & check them out. There is usually a waiting period for some of the more popular ones (most are not available in school holidays) so the earlier you contact them to see if you can book one in ... the better! Give it a go! https://www.otisfoundation.org.au/donated-properties I also gave her a bunch of cards/brochures regarding a wonderful Victorian initiative (called Mending Casts) that runs 3 day Fly Fishing Retreats (once again at no cost) for women with Breast Cancer called Casting for Recovery.(They have recently extended it to women with ANY cancer!) They also have retreats for Men with Cancer too (called Reel Recovery.) Pretty well everyone running the program have been personally touched by cancer at one stage or another (by way of family members or friends) and they just love 'giving back' ... putting a smile on the dial - whether fish are caught, or not! You don't have to come from a fishing background to attend ... they supply all the equipment & show you how to use it (and fly casting is a gentle form of arm exercise too!).... and often there is a Look Good, Feel Better session as well (where you are shown how to use make-up effectively, and scarves to create a 'special look' whilst going thru/recovering from chemo) and a couple of chat groups, to discuss your journey so far - with those who've been thru it themselves, so they 'get it'!! They have a BC psychologist attending and also a couple of Paramedics who are qualified counsellors. I attended a retreat a couple of years back & it was just terrific. A few friends (and one husband) have also attended in the last 2 years and found it very therapeutic. I am still in touch with a few of the girls on my retreat! You don't have to live in Vic to attend ..... l drove down from NSW, visiting friends along the way, both down & back, so turned it into a 2 week road trip, fishing all along the way! Canberra has their own group ... but I think that Vic is the only other state doing the program just now. I would encourage everyone to 'give it a go' when you are well enough to attend!! All the info on the retreats can be found here. https://www.mendingcasts.org/casting-for-recovery-retreats-vic Even tho I've finished all my treatment, I'll still hang around on here .... 😉 Take care, & definitely consider checking out the above to 'retreats'!! Cos you DESERVE IT!📣 Survey Invitation: Tucatinib (Tukysa) and Metastatic Breast Cancer
Dear members, We'd like to invite you to take part in a short survey about tucatinib (Tukysa) for people with human epidermal growth factor receptor 2 positive (HER2+) metastatic breast cancer. This survey is for people who have either taken tucatinib (Tukysa), or tried to access it. Your feedback will help us understand the day-to-day impact of accessing (or not accessing) this treatment, including physical health, emotional wellbeing, financial pressures, and overall quality of life. The insights you share will be used to support a consumer submission to the Pharmaceutical Benefits Advisory Committee (PBAC), the body that decides which medicines are made more affordable through the Pharmaceutical Benefits Scheme (PBS). Take the survey here: https://www.surveymonkey.com/r/LJXB3KT The survey is open until 12 September. The survey is anonymous, voluntary, and takes about 10 minutes to complete. You can skip any question you don’t feel comfortable answering. Thank you for lending your voice to this important advocacy. If you have any questions or concerns about this survey, please contact policy@bcna.org.au
Hormone treatments, tamoxifen and tendonitis
Hi there, I'm very new to this, but wondering if anyone has experience of tamoxifen and tendonitis? I've had two different types of breast cancer, but one side was HER2Positive so since January this year I have been on anastrozole. In late July I got extremely painful tendon damage - a torn and swollen hamstring tendon near my seatbone, so it really hurts to sit, and two other gluteal tendons with tendinopathy as well - no idea what set these problems off, but discovered that anastrozole, in reducing oestrogen, weakens tendons. My Oncologist said suspend it, so I haven't been taking it since early August. She later offered me a script for Tamoxifen instead. As Tamoxifen also is designed to reduce oestrogen I am wondering whether I should switch to it or not? I don't want a breast cancer recurrence, but my life quality at the moment is much affected by the tendon problem which is not healing very quickly at all. It's going to take many many months I think. If I take tamoxifen now will I slow down the healing? What should I do? Anyone out there had any experience with tamoxifen and tendons? Thanks for any experience you can share with me!!!
Early Breast Cancer Treatment Decision
Hi All, I recently was diagnosed with early breast cancer (stage 1, grade 2, HER Negative, Estrogen & Prog positive, no lymph nodes involve) three weeks ago I had a double mastectomy with tissue expanders for reconstruction. I now need to choose my treatment for post surgery. For my particular case the percentage for survival purely doing the double mastectomy surgery alone is 95% when I add hormone blocker treatment it adds another 1% so 96% total which has been recommended by my oncologist to take which I will. I have been also given the option to decide if I want to also do chemo or not, the percentage benefit for my specific cancer is less than 1% at about 0.3% (so the percentage still stays at 96% survival) Is there anyone with a similar case to mine and what you decided? Or if it was you what you would do? My immediate thoughts are for a 0.3% benefit that going through 6 months of chemo with everything that comes with that is perhaps not worth doing it? The other thing I will point out is if there are any tiny microcells left in my body anywhere that hormone blockers will stop them dividing and growing, but chemo would actually kill them. Bearing in mind there is no guarantee either way that reoccurrence will or won't happen. Thoughts?
Share your views: Information and support needs of people following treatment of breast cancer
Hi everyone, Erana from BCNA here! I’d like to invite you to participate in a research study opportunity led by James Cook University. Please see details below. If you can't access the QR code you can also follow this link Qualtrics Survey | Qualtrics Experience Management. If you have any questions or concerns regarding this research, please contact the research lead Tracey Ahern at tracey.ahern@jcu.edu.au This study has been approved by the James Cook University Australia Human Research Ethics Committee (#H9326).
BYO Cold Cap?
Hi all, I have just found out that my hospital (Monash) doesn’t offer the cold cap for chemo. The breast care nurse I spoke to was very disparaging of them, saying there was no evidence they worked, which surprises me as they seem relatively common in better hospitals. She said the only option was to BYO frozen caps in an esky - has anyone here tried this? Was it successful? How do you keep the caps cold enough?
New member
Hi. I was diagnosed with mbc in 2021. An MRI done of my hip (me thinking I needed a hip replacement) revealed a bone lesion and further scans showed I had lesions in my skull, breast bone and right shoulder blade. Radiation helped with the pain in my hip and I am now able to walk unaided. I have been on letrozole and Verzenio (abemaciclib) since mid 2021 and so far results have been positive. Lesions have either shrunk or stabilised and there is no sign of cancer in organs. I know that one day treatment may cease to work but in the meantime I remain positive and enjoy every single day. I love to travel, cook and spend time with family and friends. I’m forever grateful for Bcna, my medical team and all the research that goes in to treatments for this disease. I know others are not as lucky as me and I wish everyone well on their individual journeys.
