Video re Mets BC .... EVERYONE needs to watch it
My sister just shared this video on Facebook - this video went viral in 2015 in the USA and around the world, currently with 54,000,000+ views on Facebook alone. Holley Kitchen passed away in January, 2016, from Mets BC, age 43. 30% of those diagnosed with 'early, treatable, non spread' BC who have been told there is NED (No Evidence of Disease) will go on to be diagnosed with Metastatic BC - whether they have had their breasts removed or not. Most with BC are not made aware of this possibility in consultations with their surgeon or Oncs - but you NEED TO KNOW - so that if you DO GET unexplained ACHES & PAINS in the coming years - GET CHECKED OUT! It COULD be an indication of a problem. https://www.youtube.com/watch?v=QDQ0FjP7J-c And her follow up video a few weeks later - a 40% increase in awareness of Mets BC due to her earlier video. https://www.youtube.com/watch?v=63yTZxj7FOk An interview with Holley Kitchen re Mets BC https://www.youtube.com/watch?v=ijN11LLteTw There needs to be more research into Mets BC - to be able to identify it earlier & treat it better.
What research should we be doing?
Hello BCNA community! This is my first post. I'm a scientist working on breast cancer and I was looking through some of the threads here and it strikes me that the issues we scientists think are the important ones to study may not be the only ones where research is urgently needed. So my questions to you are: What outcomes should we be working towards that you think are most important? Are there issues to do with breast cancer diagnosis/treatment/survivorship/anything else that you feel are being overlooked in research? Looking forward to hearing any thoughts on this! xx
More research needed into side-effects of chemo and hormone therapy
In our BCNA network, many members report unexpected, painful and ongoing side-effects during and after chemotherapy and hormone therapy; for example in a recent discussion on ‘hormone therapy and tendon issues’. Sometimes treating medical staff seem to be unsure about causes and best treatment for side-effects. I read a study 'Incidence and severity of self-reported chemotherapy side-effects in routine care' (https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0184360#sec013 ) This study reports that knowledge about side-effects comes largely from clinical trials. There is little evidence coming from normal clinical care. In this study 449 people with breast, lung or bowel cancer were interviewed and asked questions about their side-effects. The study found that “3/4 of individuals undergoing chemotherapy in NSW will experience multiple side-effects during their treatment, and for over 60% this will include a serious side-effect.” The study found that side-effects were similar across the three cancer types. The authors suggest that “this information is useful for both clinicians and policy makers, who typically make treatment and funding decisions for standard practice, but often on the basis of potentially unrealistic clinical trials. This work also confirms the need for side effects to be collected using patient-reported methods, to be monitored throughout chemotherapy treatment, and highlights the importance of observational data in providing information for decision-makers that is relevant to the clinical practice setting.” Have a look at this study; it is very interesting and readable, and brings up lots of questions and ideas. Although this study is about chemo side-effects, and does not include hormone therapy side-effects; I am thinking that a similar study is needed to measure hormone therapy side-effects in the real world.
Disappointed and confused by the system
I should start by saying I am almost 73 and have had a lifetime of excellent health (apart from hysterectomy a couple of years ago) and never expected to be dealing with this. Mammograms stopped a few years ago, as is recommended. Never had a problem, apart from a few cysts which had to be drained. But after some odd feelings of swelling and fullness (GP said normal at my age) I decided to go to Breast Clinic and was immediately diagnosed (on first mammogram image) as having cancer. After biopsies etc diagnosis confirmed and was given a list of surgeons to choose from, told to choose one and make an appointment. MInimal information is available: did fast checking, online research, spoke to a few people, knew mastectomy would be the only choice given the size and weirdness of the tumour, happy with that, didn't want reconstruction etc. Decided I wanted to go to a particular hospital, one I have been to for all my other treatments in the past, although I now live outside the area. My GP recommended one surgeon at that hospital but I chose another there, thinking they would all be involved in decisions as the publicity for the hospital went on and on bout the "team" and how everyone works together. Well that was completely wrong. Each surgeon has their own "team", it's not a team belonging to the hospital as a whole. I told surgeon from the start I did not want chemo. Long story short, had single mastectomy with axillary clearance (20 nodes, 10 positive), Grade 2 invasive, part was DCIS, a strange formation (long strings, not a lump so could not be felt as such); saw surgeon on a Wednesday, operated on the following Wednesday (8/11). Excellent surgery, no complaints about the handiwork. But waited and waited for some hint of results, still did not have written results of previous biopsies, sent for CAT scans and bone scans, waited for discussion, there was a short five minutes meeting before being discharged from hospital without any definitive discussion, waited for the scheduled postopertive meeting expecting to receive a treatment plan. I had said all along I didn't want chemo. As soon as I got the diagnosis I did instant intensive research, assisted by my daughter who is a professional researcher. I know about the side effects of chemo, have done my research which shows statistical benefit at my age of any chemo is 5-6%. At follow-up discovered my surgeon was referring me on to an oncologist at different hospital, one in my area (thought still 40 mins from where I live). I felt as if I had been kicked out. I wanted to have the rads at the original hospital, we had a plan so I could stay nearby for the necessary five weeks, now it seems I have been dismissed and am being treated by postcode. Oh, I forgot to add, I am a private patient and have already paid thousands out of pocket in gap expenses. I feel as if almost NO necessary information was provided at the outset, i.e. at the point of the mammogram/biopsy, let alone at the GP. You are just thrown in at the deep end and become another statistic to be treated bit by bit and passed on to the next specialist. Where is the supposed personal care and attention to the whole person in this? Isn't that what private health insurance is supposed to be about? I am sorry now I didn't just go to the local hospital as a public patient and now I feel as if I don't have any "team" working for me since the new oncologist referral hasn't produced any result, not even a phone call to say I am on their "list" or something like that. I am waking up every morning with no idea, still, about what is going to happen. I am so grageful for all the great information on this site or I wouldn't have any idea what to expect. I so admire everyone here because they seem to be so accepting and grateful. Best wishes to everyone who is at the same stage, i.e. newly diagnosed and thrown in at the deep end. I admire you all, for seeming to be able to take it so calmly.
Stress and Breast Cancer - new study
Absolutely fascinating. When I was diagnosed I asked my breast surgeon if stress had played a part. He said that the medical community believed that it did but that it hadn't been proven yet. In the three years prior to my diagnosis I experienced the worst stress of my life. The pull over to the side of the road thinking your having a heart attack kind of stress. https://nbcf.org.au/news/new-study-shows-chronic-stress-may-fuel-cancer-growth/
ABC Catalyst: Exercise and Cancer
Last Night ABC Catalyst aired a story on exercise and cancer. The program explored the research and benefits of exercise during active cancer treatment. One Australian trial being undertaken by Professor Rob Newton at Edith Cowan University in Perth is looking at the benefits of exercise during chemotherapy treatment, including for breast cancer patients. While the trial is still ongoing, early results have been very positive. We highly recommend watching this Catalyst episode, which can been found on ABC iView - http://iview.abc.net.au/programs/catalyst/SC1502H014S00.
What the heck is going on with this BC thing????????
Ok, so I know the figures are 1 in 8 or 1 in 7 depending on which article you read but honestly. When I was diagnosed I knew one of my friends sister had had breast cancer and my family history 3 generations ago. That was it. I would see the bookings come through at work averaging one or two breast surgeries a week and sometimes there would be a few weeks with none at all. Now. WOW! 4 - 6 a week with the majority being 45-55yrs and a definite rise in under 40's. One of my friends mother in law diagnosed last year and now her mother last week. my daughters friends mother, a close work collegue a couple of months ago, a collegues sister a week after that, a collegues daughter around the same time. One of the senior medical consultants. A client drops a horse off to me and has to run or she'll be late for radiation! Bugger me. I get in to work today and ask where so and so is. "Oh, haven't you heard" She's been diagnosed last week and is off for bilat mx and ax clearance. All of these people I know in my little circle diagnosed within the last 12 months. Seriously what the heck is going on?
Will there ever be another way besides oestrogen suppression?
I've now been on AIs for over 2 years and, for me, the side effects are so debilitating or annoying. Constant pain, fatigue, possible concentration/memory loss (although may be also left over from chemo), dry skin, no libido, thinning hair, continual weight gain. I never realised until now just how much we still need the small amounts of oestrogen that our bodies produce after menopause. All of my symptoms are related to oestrogen suppression. I would dearly love to know whether there is any research being done on alternative methods of recurrence prevention for OR+ BC that focuses on something other than oestrogen.