Keeps giving
At times we wonder how did we come to be here on this forum. It started out as a diagnosis of Breast Cancer but the simplicity of that statement is far from that. For some the treatment regime is pretty much textbook and goes according to plan. For some it's a rough ride through treatment, be it chemo and or radiation as well as surgery. Some of us we find ourselves in the category of taking "Aromatase inhibitors (AIs) are a class of drugs used in the treatment of breast cancer in postmenopausal women and gynecomastia in men" (copy and paste from the net) and wondering what hit us Some end up with post mastectomy pain syndrome, scar tissue that sets the nerves off and the anxiety, side effects that we don't think we are going to get past and so it goes................. My eyes, hands, feet, sternum, ribs and everything in between seems to hurt as I count down the magical 10 years that has been suggested. Trade off for me the body has settled from the Tamoxifen induced problems, ovaries have shrunk, which excited the ultrasound guy and the Gynaecology Oncologist. Now that I am 6 months into Letrozole a whole new set of problems have emerged. Who'd a thought ovaries shrinking were a buzz! So please when you read someone's post, think for a moment crumbs I am lucky that I am not going through that and offer support
Hi from mum2jj...16 years on.
Hi all, Firstly I don't get on to the main forum discussion much these days, between work and being a group leader of the Choosing Breast Reconstruction group. I've been meaning to pop on for days and share some good news and hope to those newly diagnosed. It was my birthday last week, and the day before it suddenly struck me. I was about to turn 63 and was not sure how I felt about it, and then it dawned on me. That very same day 16 years ago (day before my 47th birthday) was the day I first heard the words "you have breast cancer". It's amazing that I am now at the point that i don't think about it all the time, and I had almost slipped into feeling sorry for myself that I was getting "old". I very quickly changed perspective to gratitude! I now have 2 adult children who were primary schoolers at my first diagnosis. I did not think I would get there. I really have much to be grateful for. My breast cancer story was not always easy. I had a recurrance 18mths after first diagnosis. Yep got to do chemo twice and radiation. Along the way I have lost some beautiful friends and had others go through second diagnosis and mets. It really is a lottery. However I know how l have been lucky up until now and wanted to share a good news story for those recently diagnosed and those going through a recurrance. My heartfelt love to all those struggling and I hope my story can encourage those newly diagnosed. I vow never to whinge about my age again. much love Paula xx
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.
Ditching the 5-year sentence of hormonal therapy?
Hello everyone, I am currently doing my second attempt at hormonal therapy drugs, and I hate it; no surprises there. I do all the things...take all the advice, all the stuff that is meant to make HT easier. But there’s only so much mindfulness you can do before just saying hey this stuff sucks and I don’t know if it’s worth it. I may be looking for a needle in a haystack lol but I’m really curious to know if the stats my onco tells me every time I see her can ever be wrong. I guess I also am in horrible denial about having to take these drugs for the rest of my life. I just can’t believe the only choice I have is life-stealing HT side effects or more breast cancer. I am very rational and scientific so of course I will take them based on the evidence and hope it prevents a relapse. I still feel so ripped off though. My question is: have any women out there started on that long jail sentence of HT meds, found that it completely ruined their quality of life, tried their very best to make it work but couldn’t, then went off it completely and DIDN’T have a relapse of breast cancer ever again? Has anyone heard any stories like this? H xo
Costs of follow up scans and how many is too many?
I had my 18 month post surgical review yesterday. I still find these appointments rather depressing. Each time you see a different doctor (my surgeon is on long service leave) they have to trudge back over things that I have mostly tucked away at the back of my mind. Quote. "18months with the invasive cancer you had and no recurrence. You've done well." unquote. WTF. That was inspirational. Seriously what goes through some doctors heads? Isn't that why we get chopped, poisoned, nuked and hormone manipulated??????????? There needs to be a class at med school on "how to not be an unsympathetic dick" Anyhoo. The point is back for another mammo, u/s and MRI. I haven't rung up for this years prices yet but last years costs were: Mammo gap between $180 and $220 depending if there is any need for biopsy. U/s gap $125 MRI $575 no medicare rebate. Seems I am no longer in the high risk group...hahahahaha so nothing is bulk billed. So if you think you might have cancer or a strong family history you can get bulk billed, if you have had cancer you no longer fit the "high risk" check boxes so you get to pay I also wonder how many tests is it safe to have? I counted up in the last 18 months I have had 7 mammograms, 6 u/sounds I think, that could be more and 3 breast MRI's, 2 brain MRI's, 2 CT's and 2 bone scans and 1 bone density test. Whack the radiation on top of that and am I nuking myself into more problems??????
Here I go again!
Hi there. Newbie to this online group. I had my first diagnosis in 2006 at 46. A grade 3 ductal cancer for which I had a lumpectomy, radiation and hormone blockers. I had Tamoxifen until developed uterine polyps (3yrs) and then switched to Arimidex (another 5 yrs). My maternal aunt had BC first in her mid 30’s and then late 50’s before she died of mets in her mid 60’s. I’d had annual mammograms since 40 because of my family history but have no genetic markers. All going well until my last mammogram which showed another BC in the same breast. This time a lobular cancer. Luckily very small and no spread but still devastating. I’ve had another lumpectomy- because I would not speak the M word! I’m now recovering from that and have started hormone blockers - again. I can’t have radiation again in the same side - which I’m thankful for - and I don’t need chemo - again very grateful. However I feel my surgeon would prefer me to have had a mastectomy ( that word I will not speak of!). I see home again in a few months and I’m thinking this is what he will recommend to keep me safe. At least I’ve had time to get my head around this and find out more about it - I just didn’t feel I could make that decision in the days between my biopsy results and surgery. Anyway I’ve been reading lots of posts here and finding out more each day. I have a bit more knowledge under my belt from my previous experience and in some ways that makes it worse! I worry about the impact of hormone blockers on my long term health and my ability to keep fit and keep the weight under control. And I’m concerned about a reconstruction and how long the recovery will be. One of the worst things about the past few weeks is that we had to cancel a much anticipated overseas trip. We haven’t travelled since 2019 so we are keen to get back travelling but not to be! I keep saying to our kids I’m not sure how many good travel years we have left and there’s so much still to see! ��🤣An In Depth article on BC Recurrence - what to look for - well worth a read
The article (below) is a 'must read' .... I've attached a PDF of it as well, so you can download it too. http://www.melbournebreastcancersurgery.com.au/breast-cancer-recurrence.html?fbclid=IwAR3HS79ElQjVbGpDuHUU538J-cm9RfZZ1qZ8vO-3Xc4u87SWilz--wGvxa0 There is a specific link to Invasive Lobular Breast Cancer, within the article. https://www.verywellhealth.com/invasive-lobular-carcinoma-ilc-breast-cancer-430623 It is written by Melbourne-based Dr Jane O'Brien ... who is a specialist breast cancer and oncoplastic surgeon who specialises in surgery for breast cancer and prophylactic/preventive surgery for high risk individuals. Her area of special interest is in “oncoplastic” breast surgery, aimed at maximising the cosmetic result following breast conservation surgery for breast cancer using advanced surgical techniques, and nipple- sparing mastectomy and reconstruction, both in the preventive setting and as treatment for cancer. Jane completed her medical training in 1985, graduating from the University of Melbourne. Following advanced surgical training at St Vincent’s Hospital, Melbourne which she completed in 1994, she undertook a two year breast surgical fellowship in Melbourne and Edinburgh, Scotland. She then worked as a consultant breast surgeon in the United Kingdom for a period of eight years at a number of world class, internationally renown breast units. During her time in the UK Jane gained extensive experience in breast reconstructive techniques, and used this experience on her return home to become one of the first breast surgeons in Australia to enthusiastically embrace the fledgling subspecialty of oncoplastic surgery, which was at that time still in it’s infancy. Following her return to Melbourne, Jane in 2005 established the Epworth Breast Service. She held a public hospital appointment as a specialist breast surgeon at the Peter MacCallum Cancer Centre from 2004-2013 and at Breastscreen Victoria from 2005-2017. In 2017, Jane relocated her breast practice to St Vincent’s Private Hospital East Melbourne, establishing The Breast Centre at St Vincent’s Hospital East Melbourne. Jane has a particular interest in the treatment of breast cancer in younger women and genetic breast cancers, and in the organization and delivery of multidisciplinary breast cancer care. Jane’s main area of surgical expertise is “oncoplastic” breast surgery, aimed at maximising the cosmetic result following breast conservation surgery for breast cancer using advanced surgical techniques and also nipple-sparing mastectomy and reconstruction, both in the preventive setting and as treatment for breast cancer.Breast Cancer Recurrence Prevention - An Illustrative Tutorial - Oster Oncology
A very interesting tutorial on reducing the chances of recurrence thru the use of surgery, chemo, Rads, Tabs and natural 'evidence based' factors such as sleep, diet & vitamins .. (I am a bit concerned that it indicates a 30% chance of recurrence if no other treatment is undertaken, which of course was the decision made by your medical team after considering ALL the options - ie double mastectomy and no chemo, rads or tabs vs 20-30% for those who've had the added treatment ....) In all reality - they really just DON'T KNOW why any of us (particularly early stage, successful surgery & no node involvement) go on to develop Mets ... and more of the research $$ from donations needs to go into this area - maybe this is an area that @BCNA can advocate more for .... trying to identify the reason/factors that turns the tissue/bones into Mets! The researchers would need to go back over the original tissue pathology & compare it with the Mets biopsy to see WHAT HAS CHANGED & WHY! Just remember - we ALL need to be very vigilant of any persistent aches & pains that hang around for more than a couple of weeks-1 month ..... My mantra is and always will be: IF IN DOUBT, GET CHECKED OUT! https://www.youtube.com/watch?v=ijpDZa7V5mQ He has video tutorials on other types of cancer too .... https://www.youtube.com/@osteroncology6776New USA Drug Trial at preventing cancer cells going to bones
I've put this in the Mets Discussion area as well as general discussion - so that everyone can follow it. This could be a really important development for EVERYONE with BC to follow. This new trial sounds REALLY promising .... how good if this works & can be fast tracked all round the world. This trial comes from a leukemia background and is now being tested on BC patients with HR+ Mets - hopefully even preventing cancer cells getting into bone marrow on patients who are currently NED (No Evidence of Disease, but who may still have cancer cells circulating in the body that may turn nasty up to 5, 10, 15 years later) as some NED patients may go on to develop mets anyway. It has worked in Mouse Studies - stopping cancer cells from turning to bone mets. Now time to test it on humans. Duke Cancer Institute investigators Dorothy Sipkins, MD, PhD, associate professor of medicine, pharmacology and cancer biology, and P. Kelly Marcom, MD, professor of medicine, have just launched a proof-of-concept clinical trial of a new drug for hormone receptor positive breast cancer patients whose disease has spread to the bone. http://www.dukecancerinstitute.org/news/phase-1-trial-new-metastatic-breast-cancer-drug-launches
