Here Goes
Hello. My name is Jenny and I live on the NSW/Vic Border. I have gone to post in here a couple of times but backed out. Denial maybe? On Wednesday I was officially given the diagnosis of BC. I have had a large lump for around a year but I have 26JJ sized breasts and the lump is down along where the bra wire sits. I put it down to thickening because of the bra wire. I recently started Lite N Easy and after loosing around 10kg I noticed that the lump was much larger than I thought. It has its own postcode ;p Its 5cm x 3cm x 2cm. So I did the mammo and ultrasound and knew when I called for results, that the urgency by my GP to get me in to see her, that something was very wrong. That day I had bloods, CT scan and was booked in for biopsy. All along I was doing as much research as possible. Armed with knowledge I have always found it easier to deal with things. Must be part of the anxiety I have day in and out. I met my surgeon on Wednesday who gave me the diagnosis. I was alone at the appointment and was in shock, none the less. I guess I was hoping it was just a mass that they just wanted to remove for safety sake. I do remember asking him what type of Cancer and I vaguely remember him saying Metastatic and that its very common. I am booked in for a lumpectomy and node removal on the 22nd. (Tuesday Week). I am then too do 5 weeks radiation. I've got all of that in my head and ready to deal with. But now I am reading all of the paraphernalia and Metastatic means I have it in other places in my body? Do they know where? Does this mean I will probably have to do chemo after radiation? I know I am overthinking all of this and should take it one day at a time. I work 3 days a week and also on partial DSP. Being at work keeps my mind off things. I am planning on taking vacation leave for the rest of the week after my lumpectomy. I am so grateful that my oldest of 2 (daughter) is able to travel up from Melbourne to bring me home from the surgery and stay with me for a couple of days. Another questions. I had been using implannon rod to control my periods, over the years. The last one was put in around 2011 and is still in my arm somewhere. As I have very thick arms I cant feel it and haven't bothered about it. I believe that it has run out of the hormones anyway after all of this time. Is this something I should tell my surgeon about? I have so many questions. When will I start radiation? Will someone contact me or do I contact them? I met my Breast Care Nurse but she was heading on vacation to France the next day. I have the number of another one and I will phone her and make contact with her this week. It's like my whole life is about the Cancer now. I am being strong in front of everyone else but these times at home alone I am terrified. Sorry if this is all over the shop but that is how my head works. I have been treated and continue to be treated for Depression an Anxiety for close to 20 years and have only recently found a good balance. The Lite N Easy journey was me actually caring about myself. Some days I shake so much it looks like I am having a min seizure. Usually I am upbeat and cheeky and able to find the lighter sign of things. But tonight I am low. Any insights would be wonderful.
Faslodex / Xeloda / Ribociclib with Letrozole
Hi All Tomorrow my oncologist wants to talk about a new drug as others not working, she has pretty much given me 2 options Faslodex (non PBS) Or Xeloda (which I believe is a chemo drug) There is also talk of drugs called ribociclib with Letrozole I just like to hear your stories/ experiences with these drugs. Many thanks :)
Newly diagnosed with mets
Hi everyone, yesterday I got the bad news that my early breast cancer diagnosis of 4 years ago has spread, I was devastated, I have changes in my pelvis and lower spine and a growth push against my kidney tube hence that kidney not working correctly and a stent is going to be inserted and a biopsie of the growth to see if it’s still the same cancer I was diagnosed with originally then we know exactly what we dealing with, I will say I’m frightened, worried, scared as hell, panicked, nervous, and all the other emotions that come along with that diagnosis, I walked out of the oncologists office and hopefully not in the hearing of the other patients there dropped the F bomb a dozen times, what the future holds for me now I don’t know what I do know is I will be fighting this all the way.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.
Advice on ceasing treatment
Hi everyone I hope someone can help me, this journey is horrible. My mum was successfully treated for breast cancer 9 years ago. Last year it returned with aggression. It attacked her intestine, peritoneal region ending in emergency surgery. She had 12 cycles of abraxane chemotherapy and was in remission. So placed on Femaras as maintenance. Four months later, markers began rising rapidly. PET /CT showed new activity all through the peritoneal region. We opted for the Ibrance + Examestene. At this time Ibrance was $5k per month but as it had such good resulted. We paid for it. Ibrance had no impact on tumour markers, they continued rising and mum got sicker and very nauseated. Another PET/CT after 3 months treatment with Ibrance showed extensive liver mets. So many they couldn't count. And disease in the peritoneal region widespread. She was immediately taken off ibrance and placed on Eribulin chemotherapy. Markers started dropping and liver function was improving. We were told things were stabling and we shared a sigh of relief. They said she could stay on eribulin as long as it work. Then suddenly she wasn't tolerating it as well. Fatigued, dizzy, just laying on an armchair everyday with no energy and she lost 4kg rapidly. They repeated blood work but everything was fine. Then she started to feel a pulling ache in her right side so they did a CT scan and found her liver was massively enlarged, deformed and so bad that they couldn't even make out what was inside of it.. Upon seeing that image and seeing how unwell my mum was the oncologist advised he saw no reason to continue treatment. That her quality of life was poor and for the liver to be in such a bad state it's likely full of cancer and she will die soon. He couldn't say when she will die. Just soon. So he sent us home and called palliative care.to set things up for mum to die at home. This was 20 days ago. In the meantime, mum was happy to be off chemo.. Her energy returned, her apetitite returned. She began doing things around the house again, we went out, she gained 3kg.. And looks so much better. We decided for a second opinion and saw a new oncologist . He re did blood work and her tumour markers have risen, and her liver function is now very much deranged.. And has deteriorated in virtually a month . Chemo toxicity cannot be fully blamed when she hasn't been on chemo for a month. He advised she could try a tablet chemotherapy called xeloda which he said would be well tolerated and may buy time. Without treatment he said she would die in a matter of weeks as the liver function is heading toward failure. I can't understand how all this is happening when she looks so good and has had the best 20 days in a very long time. But she is dying. Mum doesn't know whether to enjoy what is left drug free, or whether to take the drugs which may buy time but how will it impact her quality of life? This is a nightmare I don't want to let her go but I don't want her to suffer. Her metastatic journey has only been 15 months . Not even the average and even with trying brand new drugs.. I'm just shattered. My dad wants to try CBD oil which we have legal through a doctor but it's apparently metabolised via the liver and can impact liver function. This oncologist doesn't want her to have it. I'm heart broken.
Mum recently diagnosed
Hey all, I've joined this forum in the hopes of connecting with others. My mum is 69, diagnosed with breast cancer 2 months ago and now has been diagnosed with metastatic BC in spine and possibly lungs (they arent 100% sure on the lungs) as the spots are so small. Shes started oral chemo and hormone therapy today and will see the oncologist again in 5 weeks. She seems to be handling it well so far but she's not feeling sick or anything yet so i guess time will tell. Im sure its going to be a long journey and I'll be here to support her every step of the way. I currently live with my mum so im glad Im here to be there for her. I just wanted to pop in and say hi.
Feeling numb & sad as cancer is spreading
I was diagnosed with metastatic breast cancer in 2015. I was told it had spread to my liver & lymph nodes in my chest. The cancer started slowly growing in my liver last year, so tried two different types of chemo. Abraxane didn't work at all so was taken off that within 6 weeks. I was on Eribulin for around six months. The CT scan showed that the Eribulin was keeping the cancer stable in the liver & chest, but my tumour markers were going up. So my oncologist was concerned so sent me off for a bone scan last week. Today I have been told the cancer has spread into my bones in my lower back, legs & left arm. I thought we had the cancer under control. Obviously not! I am very upset by this news. I feel numb! The reality is starting to set in for me that I will not see my kids grow into teenagers. I am sorry if this sounds morbid to some people but it is my reality. The tears are flowing now....
Are you a member of the private Living With Metastatic Cancer group?
My name is Rachelle and I am based in Melbourne. I have MBC and joined the newly formed MBC Advisory Group to help BCNA, at this stage, with the revision of the Hope & Hurdles hardcopy guide and to inform BCNA of emerging issues affecting people with metastatic breast cancer. I have also put my hand up to be a group leader of the private ‘living with metastatic breast cancer’ group to encourage people to share their experiences and support one another. I will also keep you informed of the advisory group activities and welcome your thoughts on the good things and gaps in care that you may experience in your local areas to share at committee meetings. I see that people are more active in this forum but I was hoping, along with BCNA, that we can transfer the activity to the private group, where people may feel more comfortable to be open with their posts/comments yet feel reassured that all posts remain private. If you are not yet a member, please consider joining. If you are a member, perhaps you would like to post your story under the Stories announcement.
Ribociclib/Letrozole Combo - How long have you been on this plse?
Hi Everyone, I've been on the Ribociclib/Letrozole/Denosumab combo now, successfully since Nov 2018. I take only a low dose of Ribociclib, 200mg daily and so far so good. However, I'm heading towards the 18th month mark now and starting to get a little apprehensive about how much longer it will be effective for. I've read studies that have indicated to up to between 20 months and 30 months success for some lucky people. How long have you had success for? Cheers :)Liver and Brain mets
In Sept 2018 I was diagonse with liver mets from breast cancer I had in Sep 2015. Six months of chemo saw good results until Wednesday when a routine CT scan revealed liver cancer returning and also mets in the brain. I was devastated as I had no other symptoms. I start full brain radiation Tuesday week, for 5 days and then 2 weeks later back on chemo. I could have handled the liver coming back but the brain mets is very frightening especially with the limited survival rate. I worry so much about my 2 girls (19 and 21 as well as my husband) There is so much out on the Net and not enough that is positive when you are just getting over the shock. Please help me feel better or suggest what to read or do much appreciated and feeling very frightened Canisha