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 ?
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
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
12 months on
Hello im hoping someone out there can identify with my experience so I can shake the feeling of being a bit inadequate. i was diagnosed 12 months ago, had 2 lots of surgery and 6 weeks of radiation treatment. i have a stressful job, aging parents and have built a home - all in the last 12 months. i feel exhausted and unable to focus or concentrate. Have difficulty sleeping and am teary and feeling anxious all the time. Is this something anyone else has experienced? thank you so much for any advice.
Depression,PTSD and BC
Hi all, this forum has been invaluable to me since my diagnosis on May 26 this year. Had lumpectomy ,left breast,including loss of nipple, clear margins, nodes all clear. Yay! Stage 1, grade 3.About to start chemo, TC, on Thursday. Have lots of support too, I am very fortunate. I feel as prepared as I can be.....everyone on here’s advice etc. and lots of my own research. I have had clinically diagnosed major depression for about 20 years and then added PTSD from an incident about 12 years ago. Now BC. My gp has explained that often people with mental health issues cope very differently with physical illness. Because I can see what’s wrong and actually do something about it, meaning surgery , chemo etc, I can deal with it. who would’ve thought I’d be saying yay for depression!? Anyway, I was at first, very upbeat, not scared, sleeping fine.....here comes the rant......post surgery now , I hate the way I look, I am terrified of starting chemo and don’t want to get out of bed. Yes, I have counselling all booked in and my gp is seeing me fortnightly. I have so much to be grateful for, and I am. Anyone able to share their mix of Mental health and BC? Hoping I’m not alone. Best wishes to all.xxx
Emotions
Hi all Since chemo has begun, i feel life is different. Im anxious alot fearing what is going to happen next. I havent been going out and just feeling blah. Today whilst feeling like that a friend turned up. I cried on her shoulder and she gave me a canvas with never give up on it. I felt much better and she is going to come over and start walking with me.. tomorrow is a new day.. hugs to all of you going through this awful experience Xxxx Trikki2
Three and a half years out and exhausted!!
Hi there, Do others who are this far out from surgery and radiation (still taking Tamoxifen) suffer from a whole body and mind exhaustion? I work as an Early Childhood teacher and have returned to work full time this year, after working four last year. I don't know if it's the Tamoxifen, my age (57) or the job..or all of the above!! Hard for anyone else to understand just how exhausted I feel? Cheers!
