thank you for my birthday wishes
Hi ladies, to all of you who sent me birthday wishes for October 25th,I say a very big thank you, you know who you are!. I havent been very active on the bcna online forum, in fact I havent been very active at all!Life has been very quiet, chemo three weeks out of 4, and as its a 4 hour round trip and then factor in the chemo infusion it makes for a very long day,however, you do what you have to do,my hair is growing back all white and curly, at 64, not sure about the white, however I will take whatever comes.It has been 4 months since I have been on abraxane and whilst in the beginning it had very little side effects,it seems to be catching up with me,however its a lot better than the vinoralbine that I was on before. Its a beautiful spring day and I have just been outside and picked some of my glorious roses,they are my pride and joy and the best I have had so far,to all of you I wish you well and hope that you are all chugging along okay, or as best you can.Its been 6 and a half years since my original diagnosis of metastatic breast cancer and I would like to think that I will still be writing to you in another 6 and a half years, this was not how I had planned my retirement, however its all a matter of how the cards fall. I am so very fortunate that I have the most caring,loving and supportive partner, who at 75 I am sure did not plan on looking after me, but he has taken on the job and is simply a champion. I had a phone call from my oncologist this morning and he is trying to get me on to a access program for a combination of drugs, so things are looking up, I will not know all the details until Nov.16th but certainly is something to look forward to. So with the sun shining and a blue sky outside, things are looking up!!!. Once again, thankyou, your ongoing encouragement and support is very special, and at times is simply what gets me through the day. Wendy55
THANK YOU, BREAST CANCER NETWORK AUSTRALIA NETWORK
T My name is Karen Cowley and I have been living with Advanced Breast Cancer for 12 years. I am also a very proud BCNA Consumer Representative. On Thursday 5th April, 2018 I was privileged to be invited to a very auspicious occasion at Victorian Government House hosted by The Honourable Linda Dessau AC to mark the 20th Anniversary of Breast Cancer Network Australia. I came away from this function just wanting to write down what Breast Cancer Australia Network means to me. Today I see a very modern organisation that has become the envy of many health organisations as it’s been the trail blazer not only for breast cancer survivors in Australia but by example, is the benchmark on what can be achieved by charity organisations whose existence is to give a voice through advocacy and community liaison for our most vulnerable people suffering from chronic or terminal disease. BCNA is truly the peak organisation for Australians affected by breast cancer by providing the very best support, information, treatment and care. Personally, I found out about BCNA by receiving “My Journey Kit” following my surgery in 2006. This was an invaluable practical and informative tool. I thought “wow” a lot of research and thought has gone into this resource. From then on, I was hooked, BCNA has not only provided me with support and information, but what is impressive, is that the “heart” of the organisation is its members who are encouraged to play a role. For me this has allowed me to express my challenges and triumphs without judgement or pity; pivotal in my mental health. Today, a fantastic BCNA initiative is the Online Community which allows members to connect and help and support each other and is also a portal for the BCNA organisation to keep up with member issues. From time to time I have become quite the blogger for this forum especially in the Metastatic Cancer category. Everyone is gracious and always respectful of everyone’s opinions. My personal involvement with BCNA started in 2012. What got me started with BCNA was an Information Forum in 2012 which covered a range of topics, but for me I was passionate about new technologies. Living with advanced breast cancer you are always aware of your mortality. Prof. Fran Boyle talked about T-DM1 (Kadcyla) technology. I thought it would be treatment for me so took this information back to discuss with my Oncologist. I was running out of options, so I became very active in supporting BCNA as a Consumer Representative to get Kadcyla approved by the TGA and then onto the PBS. This process took 4 years, but we got there. It was a privilege to have the opportunity availed to me by BCNA as their Consumer Representative to have the opportunity to address a Senate Committee looking into “Availability of New, Innovative and Specialist Cancer Drugs in Australia” in March 2015. Today BCNA are advocating again to get CDK Inhibitors Ribociclib and Palbocicib on the PBS. BCNA have valued my skills and have given me much needed self-esteem, and in turn BCNA have and continue to involve me in many of their initiatives. BCNA is a dynamic organisation constantly identifying ways they can affect improving outcomes for people diagnosed with breast cancer. You never know what curve balls life is going to throw at you, and it's how you deal with them that defines who you are. For now, I am living with cancer. It is my hope that we obliterate it, but I am not wasting time worrying about it. Anyone that has cancer knows that life goes on and it’s up to you to go with it. I find it very comforting to know that I am not alone and know that I can rely on BCNA to support me. Thank you. As part of the 20th Anniversary BCNA “Field of Women” Stand with Me at the “G” on 12th August. My family and I will be there. What a wonderful way to celebrate this fantastic milestone for BCNA, an organisation that has my interests and needs at heart.
Do We Need a Special Day for Secondary Breast Cancer Awareness? Thoughts from a turtle in a cape
Why do we need a special day for secondary breast cancer? Don't we have a whole month of 'pink'? Isn't that enough? Thoughts from a turtle in a cape.......... You can see by my profile pic that I am a turtle. I live life and do not just exist through it.As a good little turtle - I may be slow but I never ever stop. It was not always this way. I had a 'crazy but normal' life, wife, mother, worker, friend and the list goes on. In 2004, the last thing you could have convinced me of was that on 11 November 2004 I would be diagnosed with early breast cancer. At 38 there are no regular mammograms available but thankfully I had always done my monthly breast check. It just was one of those things. No family history and no real reason, it just was. As many people dealing with breast cancer, I went to war. I dealt with my diagnosis head on and I was fighting to win. Battling the enemy I would use any treatments that were necessary to win. My diagnosis numbers and letters seemed good and eight years down the track I thought I was safe - I thought I was past it but it was not to be. Not for me. On the 7th of November 2012 out of the blue and totally unexpectedly, I was told - "We can treat you but we cannot cure you. Your cancer has returned to other parts of your body". I now live a life with a 'new normal'. 1 in 8 will get breast cancer by the time they reach 85 of those diagnosed where breast cancer is contained within the breast 1 in 20 will at some stage develop secondary breast cancer. where the breast cancer is outside the breast ie lymph nodes, 1 in 6 will at some stage will develop secondary breast cancer 12-15% of diagnosed patients begin with a secondary diagnosis approximately 20% of all breast cancer diagnosis will progress to secondaries there are approximately 9,000 people living with secondary breast cancer in Australia at the moment (estimates as statistics are NOT kept) A secondary diagnosis does not mean that you have been diagnosed twice. It means that the cancer has moved from the breast to distant parts of the body - most commonly lungs, liver, bones and brain. For this stage of breast cancer there is no cure. Secondary breast cancer is also known as Advanced, Stage IV and Metastatic Every single day, as more and more people (women and men) are handed an early breast cancer diagnosis, I see and hear the fear with the thoughts of 'what if". The thing is, even with a stage 3 cancer with multiple node involvement does not automatically result in a progression to stage 4. There are statistics and estimations but they are just that. There are many factors that will be stacked up against each and every individual case and we can only do what we can do to be happy and healthy. I call my squatters arriving at my door "dumb luck". No-one can tell me why I am sitting here with Secondary Breast Cancer after so long, just that I am. It is always better to work with the best odds you can. The fact is that around 20% of all breast cancer diagnosis will progress and be secondary breast cancer. Wonderfully, that leaves around 80% that will not. Early diagnosis actually means not secondary - not spread to distant parts of the body. I am always being asked about having early breast cancer in 2004 and why, if it was 'early', do I now have secondaries in my liver and bones. I personally wish they would call it primary diagnosis as it just sits better with me and it is easier when I explain it to people. Secondary breast cancer is a never ending scan - treat - repeat. It is very unusual to be on zero treatments once you have been handed your diagnosis. Even if your condition reaches a time of 'stable' or 'no evidence of disease' (NED) there are always drugs needed to keep it that way. When you have secondary breast cancer and there is NED it just means that at that time the cancer cannot be seen. The medical teams will never ever tell you that it is gone. Why, because it almost always shows up and progresses again. There are many treatments and there are many combinations of the cancer which means no two people are alike. This is what makes it all so very tricky. Basically the issue is that our cancer is smart. It may be 'injured' and even to the point of 'no evidence of disease' at times. However, it always seems to work out a way to get around whatever we throw at it. The best way I can describe it is like this: I am standing in a field, and the (squatters) cancers are attacking me. The medical team build a wall around me to protect me. It works for a while but then my squatters work out how to get around it. So the medical team change tactics and build a new wall. This may or may not work but if it does it is only a matter of time before the squatters work out how to get over the wall. All the time my body is dealing with toxic walls and is weakened by them even though they are helping. This process will generally continue until my body cannot deal with the cancer and/or the treatments any longer. How long this can take is up to so many factors. Each of us aim for years not months - I think that goes without saying. There are times of feeling pretty good and times of not so good. It is just how it is. The cycle can be for a day or for weeks or months - It all depends. It is all about living with and not waiting to die from breast cancer. People living with secondary breast cancer are more than just the diagnosis. I may be living with my 'new normal' but I have not stopped being a wife, mother, worker or friend. I still laugh, love, cry and dream. None of that has changed. I have changed and every single person out there living with secondary breast cancer, in their own unique way. In 2004 I was a warrior fighting the war. I would not change that, not even the wording, as it was me at that time and it was suitable. In 2015 I know better. The battle and war is still raging around me but it is not a fight I will lose. You cannot lose to breast cancer. It is just that your body becomes too weary to continue and it becomes time to rest. That is.. no lost fight.. not ever. So as we come up to another secondary breast cancer awareness day I would like to bring these things to your attention: Secondary breast cancer is the ONLY breast cancer that can kill. All other stages are deemed 'curable' Looking fabulous on the outside is a bonus but our insides are not playing the same game Treatments are harsh and toxic and there needs to be MORE done to ease the side effects of the treatments that are trying to keep us alive Current treatments are a statistically calculated effort to slow down the cancer but they CANNOT stop it (for long) Scan - treat - repeat is a way of life when living with secondary breast cancer Research is the ONLY way that we will find more answers than questions Education and awareness is still paramount. Even though many people will deal with breast cancer and never see it again, it is knowing that too many people will still progress to a secondary diagnosis. Without understanding and knowing our own bodies really well, more and more women (and men) will present far too late and begin their breast cancer diagnosis with a secondary diagnosis Saving the tatas, showing your pink undies, talking about being wrapped in a banana skin on facebook are silly, light-hearted games. They do not and never will solve the puzzle that is secondary breast cancer. Only quality research can do that. Stop Awareness and Find a Cure? No, just make sure the awareness is actually education and research is funded. It is all we can ask..... #SBCAD #showyoursupport
Newbie
Hi everyone my name is Marcela I am 44 years old and was diagnosed last year October the 1st with Her2 positive metastatic BC. The cancer has spread to my liver and bones (spine, pelvis and some on my ribs). This was my initial diagnosis. So as you all know just getting a diagnosis of BC is traumatising enough but to be told it has spread and that there is no cure was devastating for me and my family. I felt like I was dreaming when the doctor was talking to my husband and I in her surgery that day, because there is no-one in my family with BC. My words to the doctor were- just cut them off! as I didn't know a single thing about BC let alone Her2+ or that it was too late because of the spread. I have always been healthy and into exercise and since receiving my diagnosis I have devoted myself to an anti cancer diet and way of life. I try hard to stay as healthy as possible to live as long as I can with this, to hopefully miraculously go into remission.... or stay around long enough for new treatments or hopefully a cure for us all! When I was waiting to start treatment within that week in October last year the cancer fractured my spine. All I was doing was getting up from being seated on the lounge! The pain was excruciating and I have had children naturally so thats saying something! They had to give me so much pain medicine just to have me put my legs down to have me go through the CT machine. Every time they moved me the pain was through the roof, even with all the meds. They warned my husband that I may not walk again.....they eventually got me through the CT machine and they recommended to my husband that I have radiation on my spine. I was in no condition to make decisions because of the amount of meds to control the pain. I had the radiation and recovered in hospital for 3 weeks. In those 3 weeks I walked! And since then I have come a long way. They give me a bone strengthening injection with my treatment to prevent further fractures. I had chemo for 5 months along with Herceptin and Perjeta. I am currently having a break from chemo but I am on Herceptin and Perjeta as long as they continue to work. I would have to stay one of the hardest things through this is the mental turmoil. As you all know we have our good days and bad days. I guess being faced with your mortality is something that people who have cancer or have had cancer know all about to well. I previously had my own business and worked very hard. Since being diagnosed I gave that all away and focus solely on living! I focus on my family and my health. I guess my cancer diagnosis really gave me a wake up call and made me realise what is important for me. Take you for reading my story ladies, I wish you all the best of health. See you all here soon! :) I posted his on the main page. But I thought I would post this here to see if I could find ladies here in a similar situation.Newbie to this site
Hi everyone my name is Marcela I am 44 years old and was diagnosed last year October the 1st with Her2 positive metastatic BC. The cancer has spread to my liver and bones (spine, pelvis and some on my ribs). This was my initial diagnosis. So as you all know just getting a diagnosis of BC is traumatising enough but to be told it has spread and that there is no cure was devastating for me and my family. I felt like I was dreaming when the doctor was talking to my husband and I in her surgery that day, because there is no-one in my family with BC. My words to the doctor were- just cut them off! as I didn't know a single thing about BC let alone Her2+ or that it was too late because of the spread. I have always been healthy and into exercise and since receiving my diagnosis I have devoted myself to an anti cancer diet and way of life. I try hard to stay as healthy as possible to live as long as I can with this, to hopefully miraculously go into remission.... or stay around long enough for new treatments or hopefully a cure for us all! When I was waiting to start treatment within that week in October last year the cancer fractured my spine. All I was doing was getting up from being seated on the lounge! The pain was excruciating and I have had children naturally so thats saying something! They had to give me so much pain medicine just to have me put my legs down to have me go through the CT machine. Every time they moved me the pain was through the roof, even with all the meds. They warned my husband that I may not walk again.....they eventually got me through the CT machine and they recommended to my husband that I have radiation on my spine. I was in no condition to make decisions because of the amount of meds to control the pain. I had the radiation and recovered in hospital for 3 weeks. In those 3 weeks I walked! And since then I have come a long way. They give me a bone strengthening injection with my treatment to prevent further fractures. I had chemo for 5 months along with Herceptin and Perjeta. I am currently having a break from chemo but I am on Herceptin and Perjeta as long as they continue to work. I would have to stay one of the hardest things through this is the mental turmoil. As you all know we have our good days and bad days. I guess being faced with your mortality is something that people who have cancer or have had cancer know all about to well. I previously had my own business and worked very hard. Since being diagnosed I gave that all away and focus solely on living! I focus on my family and my health. I guess my cancer diagnosis really gave me a wake up call and made me realise what is important for me. Take you for reading my story ladies, I wish you all the best of health. See you all here soon! :)
Advocacy for MBC is vital
I am a 59 year old male breast cancer survivor who was originally diagnosed in 2010 and underwent mastectomy, chemotherapy, and radiation. In 2014 I was subsequently diagnosed with secondary breast cancer with lung and bone mets. Feeling really well and passionate about continuing to build our MBC profile and voice within the community...together we can make a difference for those that follow in our footsteps
3 Times is enough
2003 - found a lump in my right breast - lumpectomy and radiation. Follow up with arimedex. 2010-recurrence in right breast -mastectomy and lymph node removal although all clear-follow up Femara. Thought ok all will be well Annual check up with surgeon and 6 monthly check up with oncologist. 2014- mammogram suspicious left breast. Biopsy - all clear. Decided on prophylactic mastectomy in June. 2015- annual check up CT scan - metastatic breast cancer in bones and lungs.Devastation,anger disappointment sadness. Radiation follow up with Aromosin and Afinitor. I have had to talk to myself a number of times since- throw out the poor me and what ifs. Not handling the blood tests, scans and treatment however I have wonderful support and need to take each day as it comes. I really appreciate everyone's posts as the feeling of being alone is swept away. Stay strong everyone
Sad Day
Hi There Ladies, its been a very long time since I have posted, I even stopped visiting the site as I find it difficult to navigate my way around. When I was going through my treatment I joined a support group through this network, we meet for lunch about once a month and are there supporting each other as best we can. I have loved this group, the women are just awesome and I hope I have given as much as I have been supported. Last week we lost one of our ladies, to say the group is gutted is an understatement, I find I have trouble even talking about it. Tomorrow we will attend Rita's funeral and continue to show our support as best we can. Losing one of our own forces us to face our own mortality, it has also helped us forge together even more. So ladies Thursday say a little pray for one of our own, another angel was given her wings. Donna
Brain tumour
Hello Pink family, Feb 10th I'm having brain surgery. Shit scared but will of course pitch up. They wanted it next week but one of my daughters is getting married on 31 Jan which is pretty special, then honeymoon and granddaughter needs to be with me. I feel lucky dates are fitting in. The larger it grows the better to remove so I am told. Two weeks is nothing in the great scheme of things. Please think about me on Feb 10th. I WILL BE BACK. Love Sarah54
2015 and already...
Good morning ladies and gents I've been alerted to the messages and its great to see ideas and thoughts in relation to travelling but more importantly the continued connection we as ABC peoples require to maintain a sense of validation. I loved reading how people coped and what plans they had for their up and coming travel destinations. The places to go to like Tilly said? Thailand or going to Broome and riding a camel on Cable beach. Then the options to travel in Australia because of limitations and the not knowing what other countries can look after. Sweden sounds nice especially how they look after you. But OZ has a lot to offer and so much more to see. Would love to go to Tassie. I'm heading to Singapore for a week for Chinese New Year and i'm going because 1) my friend is from Singapore works here but goes home to visit her family so I'm staying with them 2) I'm deeply into reading the third book of Kylie Chan 'Blue Dragon' on dieties and Gods fascinates me so when the offer and the incredibly cheap airfare came up (I'm flying Scoot) I just couldnt pass it up. Hubby is extremely supportive.He's going to be at work to pay the mortgage but even he says its crazy not to take this opportunity up. I do love him so. Changing the subject slightly my medication has increased for pain in my back (I am now 2 inches shorter due to the collapse of vertabrae) from 20, 30, 25 to a whooping 40mg of Targin. It truly does help and though I am not covered for ABC I'm covered for other incidentals and its those incidentals I believe is what can blow out into a huge bill. Mind you I wouldnt want a fractured ankle or I've fallen awkwardly on my knee or something like that. So here I come Singapore! yah! You know after all of this I every now and then feel so alone I just want my family around but they're in NZ and hubby well he's FIFO and working so hard for us and paying our house off that he just can't always be here. Fortunately the moments are few. But good to hear how everyone is going and look forward to seeing everyone at a get together. Donna
