SHINE (The Sleep Health in Breast Cancer Study)
Hi Members, BCNA's Policy & Advocacy Team recently shared the below study which may be of some interest to you: SHINE (The Sleep Health in Breast Cancer Study-Evaluating the impact on psychological wellbeing and medication adherence) Researchers at the University of Strathclyde Sleep Research Unit in Glasgow (UK) are running a study to better understand physical and emotional wellbeing amongst people diagnosed with breast cancer. More specifically, the study aims to: · learn about wellbeing of people diagnosed with breast cancer · identify potential side effects of cancer treatment · support the development of future interventions, for people diagnosed with breast cancer who need to take hormone therapy. This project has been approved by the Strathclyde University ethics board. Who can participate? You can participate in this study if you: · are aged 16 years or older · have ever been diagnosed with breast cancer · have internet access. What does the study involve? The study involves taking part in an anonymous online survey which takes between 10 to 15 minutes to complete. The survey includes: · demographic questions · questions about breast cancer diagnosis · type of treatment · aspects of physical and mental health, and · hormone therapy adherence (where appropriate) How do I take part? If you are interested in participating in this survey, please visit here. If you would like further information, please contact shinestrath.study@gmail.com. This survey closes on April 31, 2022. By completing this survey you are providing your consent (agreement) for the University of Strathclyde (UK) to collect and store your survey answers on Qualtrics overseas server (large computer).
No energy
Diagnosed at 47 in Dec 2019 after I found a lump.My treatment consisted of lumpectomy, radiotherapy and Tamoxifen. About 3 months after starting Tamoxifen ( started April 2020 so 12 months ago ) it was like I hit a brick wall. I have little to no energy. I finished work at Christmas 2020 due to this and just do a little bit of work for my husbands business. Little as possible if I’m honest. I have tried regular exercise and still do. Doesn’t help.I started antidepressant. My mood is ok. I just have no energy. I have lost my Mojo which is frustrating. Anyone else that hasn’t had chemo feel like this? Or is it just me ?
Hi strangers
Hi ladies long time no speak, I hope you are all well and finding some happiness in one form or another. i have just read some of my own posts from last year, omg things have sure changed since 2017. it was my second year july 4th don't know where the time has gone, my doctor was very happy with me and I disscused the pain I still had constant 24/7 . Not a problem he said we can is that so I went on Endone now I'm on Pregabalin which seems to be helping it blocks the pain. i have stopped lazer and I have a normal massage which I think has helped, still get this cramp grabbing pain that comes across my breast that comes from under my arm pit, sorry to much crap lol. it gas taken a while but I think things are getting better so keep going things will get better over time chow for now xox
Remedial Massage with a Portacath
Just wondering if anyone here has any knowledge about having a remedial massage with a portacath. I am very tight across my upper back/shoulders and getting mild headaches. I don't have lymphoedema thank goodness. I am on Herceptin and Letrozole and am not sure if they could be causing the headaches. It has occurred to me that a massage to loosen things up may give an answer and make me feel a whole lot better. Do any of you lovely ladies know if it would be safe and do you know if using a sports orientated massage therapist would be ok? I am starting to feel a little grumpy and fed up. :/
Dense Breast Tissue and MBI. Molecular Breast Imaging
A ‘new’ method of imaging for those with Dense Breast Tissue - not widely available yet ..... https://www.mayoclinic.org/tests-procedures/molecular-breast-imaging/about/pac-20394710?utm_source=facebook&utm_medium=sm&utm_content=post&utm_campaign=mayoclinic&geo=national&placementsite=enterprise&mc_id=us&cauid=100502&linkId=79219942&fbclid=IwAR0VbnaZYrCDFNUeDp514fWkUb7glUL-04SlSRlmYrWrpt7VrGdM9vKFj3Q
Putting it out there to my networks - Pyloric Stenosis, anyone???? Also, be your own advocate
Hi all I got my 4 year all clear mammogram and ultrasound in October (Yay). But some of you know that after BC treatment (surgery, chemo, radiation, Herceptin) was finished I was diagnosed with Achalasia a disease that makes it difficult for food to get into the stomach. I had major surgery for Achalasia last year. Things were good for a while. Then in the last couple of months I had severe bloating and several ambulance trips to hospital with the worst abdominal pain I've ever experienced in my life. I found myself back on the medical roller coaster for the third time. Scans showed a thickening in my small intestine. However, the CT I had last week showed nothing abnormal. Finally, after an endoscopy, on Friday I was diagnosed with Pyloric Stenosis - a condition which is apparently rare in adults, that blocks food leaving the stomach. I just want to reach out to anyone who has, or know of someone who has Pyloric Stenosis. It's hard to make decisions about surgery if I can't find information on what others have personally experienced. I would be grateful to hear from anyone. I also want to emphasise how important it has been for me to be my own health advocate. It took ages for me to be diagnosed with Achalasia and thankfully I was only stage 2. I had Achalasia symptoms for 2-3 years before being diagnosed with BC. During BC treatment all my Achalasia symptoms were put down to side effects of chemo or radiation. Nobody was even looking for something else, despite me telling them I thought something was going on. With BC, despite me being the one to find changes in my breast during a self exam I was initially told it was nothing as it wasn't a lump, just a thickening, and chances were it was nothing as I wasn't 50. This third time round even with an abnormal scan from back in August 2018 and problems that were escalating over a few months, the doctors still thought my symptoms could be par-for-the-course side effect of chemo that I had in 2016! It's only when I kept on going back to my specialists that they finally did extra tests and the endoscopy which showed that the scans were correct and there was a physical abnormality that explained all my symptoms. I used to feel silly when I would tell a doctor I thought something was wrong. But now I acknowledge that I know my own body better than the medical professionals and it serves me well to listen to it. I will never feel silly again. Wishing you all the very best. Nadine
Energy surges
Have had a couple of interesting days. Yes, unlike most of you I am only in the first cycle, just about to head into week 3. My energy surged back yesterday (morning) and then again this morning. Got heaps done throwing out clothing I will never wear again and tidying up, etc. etc. but then after some advice from a friend, I realised that I was a bit out of control and so have acknowledge that I genuinely have to step back, stop interfering, let go and let my replacement do her/my job at work. Such a trivial issue - Kay, get yourself a hobby!
Unfortunately someone else always has worse news
Yesterday I started Cycle 2 Round 1 of 12 chemo treatments, it hasn't gone to bad. I just woke with it being a very emotional day, continually crying at any little thing but thankfully woke (haahaa as if sleeping happened) feeling much better today. Whilst I was having chemo in Cancer Clinics very comfy recliner my Aunt sent a message that my Uncle's treatment has been delayed, let me fill you in on the story. The most incredible, amazing, thoughtful and kindest human being my Uncle (wish he was my dad, I got the dodgy brother boohoo) was diagnosed with Leukemia 5 days before my BC diagnoses in December 2018. He was blasted with inpatient Chemo for a straight month, I least I get mini breaks I can only imagine how sick he has been. They found a Bone Marrow donor in Germany and were all set to go for next week, his counts were great but they decided to be over cautious and double check. Unfortunately his counts sky rocketed and Transplant has been delayed by another 6 weeks and his back in Hospital getting Chemo blasted AGAIN for a month. How much is a person expected to take and deal with. My amazing Aunt is a bloody mess and can't believe they are back at square one, SO BLOODY UNFAIR, as I wrote before he is the most amazing human being and he is one of last you want to leave this world before his time. As my Aunt said it has to be true that bad things happen only to the good, she kindly had me in that old adage also. The next time I feel sorry for myself I have to remember that I'm getting along OK and no backward steps, fingers crossed, yet. So can I ask that today if any of you lovely people get a moment, even though you all have your own burdens to bear, can you give my Uncle a little thought or prayer for he truly is amazing!!! Thank you
Playing the cancer card
Usually I am reluctant to emphasise my condition. However, today I was compelled to let my G.P.'s receptionist know my condition after being informed that I would need to wait for another 3 people in front of me, after already waiting half an hour. I left the surgery and came back because I knew I had to have my injection or risk pain and fractures. I had made my appointment before Christmas. All I wanted was my monthly injection. My G.P. was very apologetic. All good now but...Seeking a medical oncologist
I am 11 years down the track from my BC diagnosis and looking for a recommendation for a good oncologist in Adelaide or surrounds. I believe the one I went to for Chemo treatment dished out the right concoctions including anti nausea medication which got me through with no dramas. However, I found him to be totally unapproachable, talked fast and in medical lingo I couldn’t understand and as far as complimtary treatment - forget it! Back in 2009 I went to a BCNA forum and heard a fantastic Oncologist speak - I thought to myself- I wish this lady had been my oncologist! 10 years later I have tracked her down but only to find that she is not consulting in this field anymore. Such a pity as she was really in tune with the whole body, exercise, mindfulness - not just the chemicals. I was wondering if anyone can recommend an oncologist that they have found to be easy to understand, compassionate, interested in all things in balance, etc, etc. I am at a crossroads and have to make a decision about continuing on with hormone therapy medication or stopping. Best of luck to everyone - at whatever stage they are at Cheers
