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!
New trial
The technology that created the Oxford-AstraZeneca vaccine is being used to develop a jab that could help treat cancer. Scientists from the University of Oxford and the Ludwig Institute for Cancer Research have developed a two-dose vaccine which they believe can target tumours in humans. When tested on mice, the jab increased the levels of anti-tumour CD8+T cells which attack the growths, greater reducing its size and increasing survival rates. It also resulted in an enhanced response to anti-PD-1 immunotherapy - turning a person’s own immune system against a tumour - which is often ineffective as some patients have low levels of the T-cells required. The team created the cancer vaccine with two different prime and boost viral vectors, one of which was used in the development of the Covid jab. To ensure the new vaccine targeted cancer cells specifically, it was designed to seek out too MAGE-type proteins that are present on the surface of the cells. The first human clinical trial will take place later this year, with the jab being trialled on 80 patients with non-small cell lung cancer. Benoit Van den Eynde, of the Ludwig Institute for Cancer Research, said: “We knew from our previous research that MAGE-type proteins act like red flags on the surface of cancer cells to attract immune cells that destroy tumours. “MAGE proteins have an advantage over other cancer antigens as vaccine targets since they are present on a wide range of tumour types. This broadens the potential benefit of this approach to people with many different types of cancer. “Importantly for target specificity, MAGE-type antigens are not present on the surface of normal tissues, which reduces the risk of side-effects caused by the immune system attacking healthy cells.”Understanding Breast Density - Professor Wendy Ingman
Mammograms are a fantastic tool for identifying many breast cancers - However, having Dense Breast Tissue can result in a later diagnosis as tumours don't always 'show' on 2D mammograms for women with more dense breast tissue, until they are larger & more dangerous. Sometimes dense breasts are also called 'lumpy breasts'. Mine were - but I was never told of the increased risk of delayed diagnosis of Breast Cancer. My own tumours were found 4 months after a 'clear' mammogram - when my GP suggested she check my breasts. Breast Density 'masks' Breast Cancer. A delayed diagnosis can lead to larger, more dangerous tumours and may even be Stage 4 at diagnosis due to not being picked up on previous mammograms (and I'd had about 10 - as I'd been 'called back' a few times, but never really told why.) Dense tissue shows as 'white' (or occult) on the mammogram, and tumours show as 'white' as well. White on White = unable to detect the tumour with a 2D mammogram. (3D Tomosynthesis machines are better at picking up dense breast tissue - but are not commonly available at Breast Screen clinics.) There is a need for Breast Screen clinics to advise women of their breast density - but currently only Western Australia Breast Screen actively advises their clients of their breast density. An Ultrasound is recommended for anyone with dense breast tissue - and biopsy on any suspect areas. Tell your daughters, sisters & any other woman who SHOULD KNOW THIS as a 'right'!! https://www.youtube.com/watch?v=6BJeLEjs2q4
Letrozole and Prednisolone
I posted on another discussion thread the other day that my oncologist was very unhappy with the joint pain that has gradually crept in over the 8 months or so that I've been on Letrozole. As well as okaying painkillers, he gave me a first option of prednisolone over 7 days to see how it would work. I took my first one this morning, hoping that it would make a perceptible difference and that I might see some improvement by the weekend. I got up from my desk at midday and walked across the office - shocked that I thought about the process after I had already taken a few steps. Tonight, during dinner, I got up from the table to let the cat out. To make it clearer, I just stood up in one motion and started walking. Last night, to get up from the table took me swinging around sideways in the chair, painfully levering myself up using the table and bench for support, getting my balance, then slowly straightening my body over the course of a number of hobbling steps. I turned around to go back to the table and saw one of the kids with her mouth open - "Mum! You just got up to let the cat out - did you realise that!" I feel overwhelmed...I don't know what I feel... I knew it was bad but I don't think I realised how restrictive it has become. I'm scared in case it's some anomaly. I'm scared to hope that it will keep improving and that the improvement will continue after the course is finished. I'm not sure I can go back to feeling the way I was. I'm not saying that I'm pain-free. My legs are really aching after a day at work and my joints are still sore but they're sore in a way that I can feel it, not stiffening up and sore in a way that I can't actually do anything.
Breast oedema
Saw for breast care nurse today as I've still got a lot of swelling and pain in my breast, which I thought was the seroma. But she says I've also got oedema of the whole skin of the breast too. She taught me the correct massage technique to manual drain my lymph nodes- hurt like hell. Wants me to do it 3 times a day for 2 wks then go back for reassessment and if not working then to lymphedema specialist for ultrasound technique. I came home and taught the massage to my husband.. must admit he enjoyed it lol!🔔 Update on access to Zoladex treatment
We heard your concerns about AstraZeneca's decision to discontinue Zoladex 3.6mg from 1 November 2026 - and we went to work on your behalf. After coordinating advocacy with clinicians, consumers and key stakeholders, we're pleased to share that options will be available for those affected, including a free access program for eligible patients and work underway on alternative treatment pathways. Supply continues in the meantime and we'll keep you informed every step of the way. Full details available through the link in our bio. If you need support, our Helpline is here for you on 👉 Reach out to the BCNA Helpline 1800 500 258 for information and support Read more here: 🔗 https://www.bcna.org.au/latest-news/bcna-news/update-on-access-to-zoladex-treatment🩺Lumpectomy or mastectomy? Understanding the options
Hi everyone, we wanted to share a helpful resource about a decision many people face after a breast cancer diagnosis, choosing between a lumpectomy and a mastectomy. For many people, both lumpectomy and mastectomy are safe and effective options, with similar long term survival outcomes in early stage breast cancer. A lumpectomy removes the cancer while keeping most of the breast and is usually followed by radiation. A mastectomy removes all breast tissue and may be recommended based on medical factors such as tumour size, multiple tumours or genetic risk, or chosen based on personal preference and peace of mind. Importantly, the article highlights that this decision is not just medical. Feelings about body image, anxiety, future follow up, recovery and quality of life all matter. There is no single right choice, only the choice that is right for you 💙 If you are facing this decision, taking time to ask questions, understand your options and talk openly with your care team can help you feel more confident moving forward. If you feel comfortable, you are welcome to share what helped you make your decision or a question you found important to ask. You are not alone, and this community is here to support you. 🌱 This information is derived from an article written by Melbourne breast surgeon Dr George Chou, published on the Melbourne Breast Cancer Surgery website. You can read the full article here if you would like more detail: 💬 Questions you might want to ask your care team Many people find it helpful to write down questions before appointments. Some that may support your decision making include: Are both options medically appropriate for me? What additional treatments would follow each option? How might each choice affect my recovery and daily life? What are the long term follow up needs? How might reconstruction or going flat fit into this decision? There is no rush to have all the answers at once. It is okay to take time, reflect, and seek support. Don't forget our Helpline is here to chat through anything that might help make this easier for you - call us on 1800 500 258.
recovery and life
It has been a week since my surgery for the lumpectomy and node removal. Funny enough, I was not nervous. I went into surgery calm and with the attitude - I am in good hands. Surgery took a bit longer because I found out today they got a rather nasty surprise.....the lump measured 8.5 cm or 85mm instead of the 2.5 cm they thought it was going to be. In their words "it was angry". With my slightly dark sense of humour - all I thought was "you would be angry too if someone came and threw you out of your comfortable home!" However, i know that 'angry' is not a good phrase in medical terms. The nodes biopsy hauled out 5 and 4 came back positive with the 5th showing signs of being 'annoyed'...clearly another medical term for "Not happy Jan!' This afternoon, I am being 'rushed' in for a full body cat scan and on Monday a bone scan is to be done. The medical team were hoping for both scans to be done tomorrow so they could have the results to be back for the conference being held prior to our meeting Monday afternoon. Alas, they will only have the CT scan. The doctor was truly fantastic in her delivery of how things had gone and she gave me time to try and catch my breath again. Once we had finished talking, my Breast Care Nurse called and confirmed the appointments, requirements for them and then asked the important questions - "How are you feeling??" - shell shocked again but to be honest, I had a 'feeling' that there would be more to come. So, come Monday - a new ball game will begin and this time the team and I will be going in to win the game! Oh yes by the way - the scars have healed amazingly. had 1 really rough day out which had me in tears, I found as long as me and my new best friend - my little u-shaped pillow go everywhere together - I am comfortable. Hope you are all coping with the lock-downs and life is throwing you giggles, chuckles and laughter. Lois xx
Just touching base :)
Hi lovelies I've just got back home from surgery last Thursday :). On the pre-op scans they found a 2nd mass which had been "overshadowed" by the main mass on previous checks, so that's been taken away as well. Lumpectomy (with the 2 masses) & full axillary lymph clearance (lymphs were already proven as malignant in the initial biopsies) & I must say that the surgical team did a very lovely job with the lumpectomy :) I have the surgical follow up appointment next Friday (before people start their Xmas breaks) & the 1st MDT meeting after Xmas will be 7th January. So it's a quick trip down to Tassie on New Years day to see our daughter. The poor thing only just moved to Tasmania & 2 weeks later I rang her to say "It's all okay, BUT Dad's just had a Heart attack!" & then 2 weeks after that I rang her again to say "It's all okay, BUT I've got Breast Cancer!"... I figure we'd better see her just to prove that we really ARE both okay before we start getting organised for the next steps, with Chemo starting sometime in January :) Happy holidays to all everyone. <3Dexamethasone
Who’da thought? Good old dexa may be one of the first effective treatments for those seriously affected by COVID-19. I was one of those who jettisoned the steroids after some obligatory dosing with A/C, as I had no nausea and dexamethasone with Taxol wrecked my carefully honed anti-constipation regime! Delighted to know it may also be useful in the fight against the virus. Possibly the only good thing about a pandemic is we will make all sorts of medical discoveries.
