DIAGNOSIS OF SECONDARIES Sailed along until approx 1998/9 when I began to be troubled with right shoulder pain and back pain. Over the next couple of years visited doctor, physio and masseur several times to be told I had arthritis and early osteoporosis. In the end I was often extremely tired, could not sleep because of pain. One morning I awoke in extreme pain and could not roll over or get off the bed. Back to doctor whom at my request ordered a bone scan which subsequently showed metastases right shoulder and collar bone, spine, both rib cages, pelvis and neck.

Needless to say, I was devastated. Commenced on Aredia, tamoxifan, and MS Contin for pain relief. In Dec changed to Femara. Had to cease employment, as I was just too sick to work, most days flat-out getting off the bed. Took 12 months for the treatment to start having an effect and a further 12 months before I felt any real improvement in my general wellbeing. In addition, during this time I had radium treatment to my right shoulder, collarbone and right hip, this eased my pain considerably.

ABOUT ME I have been married to David for 18 years. Best thing I ever did. We live on a cattle property which I was actively involved in until this diagnosis and I was also in full time employment as Director of Nursing for Blue Care, Mundubbera-Eidsvold Shires. Have reached the stage where I have just commenced casual employment, 7 hours per week. TERRIFIC!!! Feel I have been given some life back and the cancer is not controlling everything. Have wonderful support from my husband am sure I would not be doing so well if I did not have that support.

Heard on the wireless about this group, rang up and have been part of this wonderful group since. Have just learnt so much. The understanding , encouragement from all and your inspiring stories help me cope with my lot. You also relieve my isolation as living on a property, do not have contact with anyone except my husband or when I go to town to shop.

I had CFC and andermyocyne {or something like that} and then a mastectomy on 18/3/03. The surgery was the very lowest point and I cannot describe the joy I would have felt if just one single soul who had been down that path had come to the hospital. I had my phone in so that helped. I then was given a course of Taxol which made my foot go flappy and I was back in hospital while ‘A Current Affair’ got hold of the story and through the group I was interviewed. My radiotherapist has said he wanted me to have radiotherapy on my breast area in order to stop the cancer coming back. I was on the waiting list but it was 12 weeks, so I wrote to the minister. Apparently this is a really good thing to do and they stir up all those people in the department you need help with. The Minister looked at my case and then asked my Radiologist to ring me and tell me that I was terminal. He was pretty embarrassed because we both knew this. This was treatment that would hopefully make it all less rotten later on. My Dr kept saying ‘you do know you are terminal’ and I kept saying ‘yes but this will help won’t it?’

Bad bad thing.

I went to Townsville the week after I wrote to the Minister and was on the telly. Some poor people who could/would not write may have died shortly after in their beds. I never wished to shove myself up the list. I only wanted to help those in need of radiotherapy and I was very aware that the treatment for me was not a life saving one. At this point the fact that I was metastatic and unsaveable was shoved down my throat.

I had 4 weeks in Townsville for the 2nd radio on my chest area but apart from that I have had no time off work since the first episode. I get tired a bit but have been able to cut my morph to between ½ and nothing in the last year. I was given 2 years so the clock ticked to Nov 2004. I still work full time and average 48 hours per week. I have been overseas and that was a breeze for me and Bob and I also make a point of travelling a bit with work.

If my story is being read by any newly diagnosed people then I would shout scream and shake you all into looking at the big picture. This is not the end, it is just the next bit.

ABOUT ME I do feel that the more power I give this thing the stronger it will grow. I want this story to be about me and not my cancer. I have 6 children, 5 girls and a boy, and no grandchildren yet despite my none too subtle hints in that direction.

My husband Bob and I run a business selling equipment to the local mining and sugar industries. I enjoy any form of craft, sewing, painting, writing, in fact anything where you have something at the end for all your work. I also love antique furniture and have restored some great pieces.

Until my job swallowed up my days I was active in the community and as my last child has left home I hope to get back into this. My wonderful family have been so supportive, and my husband is a gem.

Update July 2007

Best news is that I am still here and we got 2 grandsons 2 years ago. Very blessed as one was an IVF baby. Then in the last 3 months we have got another 2 grandsons and heard that yet another IVF blessing is due here in December.

At the start of this journey I vowed I would never change anything because I had breast cancer.

We had our business so I worked and worked and worked. Woke up one morning with two grandsons and wanting to spend time with them. I had a total life changing moment when I realised that my promise to not let the breast cancer change my life had backfired. I needed to think about my life if I had not gotten breast cancer. We would have moved on. Our business was worth money and we would have sold it. We would have enjoyed our time more. We did all that.

We holiday and we spend time with the kids and where ever we want. We might be spending their inheritance but they are all big and ugly enough to make their own lives.

he only thing of my former life I have clung to is an interest for my husband.

I know I will not be there for him in his later years so I have encouraged him to establish another business. One that requires him to be there when he can and absent when he cannot.

All done and dusted. I know I am so lucky to be able to lead this life.

My GP sent me for a CT scan of the spine, thinking that I might have some disc problems. To our horror, the scan showed a few hot spots and a fracture to the head of the femur. My last mammogram was exactly 2 years prior. From there, my life took a complete turn. (a life changing experience that I did not asked for). Up-to-date treatments : open reduction & internal fixation NOF, radiation to NOF, 6 cycles chemotherapy, mastectomy and 15 radium treatments on the mastected breast.

ABOUT ME Was born in Malaysia with chinese parentage. Have been in Brisbane for the past 27 years. Live a normal family life with a good hubby and 2 beautiful daughters. When the girls were young, devoted all my time to being a mother and wife. As the girls grew up and left home to study in Melbourne, I worked as a administration officer in a Endoscopy Day Centre. Enjoyed every minute of working life after being a stay-home mum for 20 years. What a pity that I have to stop work now! I am a outdoor person with a love for movies, shopping, walking, travelling and enjoying FOOD.

I am a Christian and have been involved in teaching Sunday school at our church and teaching RE in a state school. During this crisis, I thank my God for being my strength and rock.

Beside Him, the love and support of my hubby and daughters gave me great comfort during these 10 months of “horribulies”(if there is such a word).

I am coming to terms with this ‘chronic illness’ and have started reclaiming back my life that was taken away from me so suddenly. Even though my physical body has slowed me down, I am glad my mind hasn’t. At times it can be frustrating that I can’t do the things I thought I could do but with determination and positive attitude, I hope to be there ONE DAY. Every day is a new day and a bonus.

DIAGNOSIS OF SECONDARIES All went well until April 2007 when I had a brain tumour removed, which was a secondary from my breast cancer. I started taking Herceptin in May, which seems to be going OK.

ABOUT ME I am 71 years of age, married with 3 children aged 41, 39 and 38. I have 3 grandchildren.

DIAGNOSIS OF SECONDARIES

After two and half years of Tamoxifen another mass in my left breast comprised of lymph nodes (18) and tumours on the liver were diagnosed. Another lumpectomy and auxilliary dissection, and insertion of a porta-cath followed. Just to make life more interesting I developed lymphoedema in my left arm! Out came the auburn wig again, but this time we had a champagne morning tea and our friends/family all had a go at tidying up the fallout.

I started on Taxotare but was unable to complete cause as again I became very toxic. Extra challenges included insulin-dependent Type 2 Diabetes and a DVT at the porta-cath site. Femarra was only successful for a short while as the liver mets continued to grow. I also developed “trigger fingers” on both hands and have had corrective surgery. Aromasen became my drug of choice but mets were recently diagnosed in my right hip and I am undergoing radium therapy for the pain which certainly has eased.

ABOUT ME

I am “glass half full/Pollyanna” person and try to enjoy life to the max. I am definitely NOT a BC survivor (as this has connotations of a battle), but a person living with Advanced Breast Cancer – like any relationship we have a good and bad days. Strange as it may seem I think I am a better person for my experience – more aware of others and Nature, more tolerant and hopefully a better person.

I am 68 years young – wife/carer, mother, mother in law, aunt, nana and soon-to-be great nana. Brian and I have been married for 48 years and are blessed with three children and six grandchildren. My family are the most important part of my life and are extremely supportive.

DIAGNOSIS OF SECONDARIES Near the end of my radiation treatment in October 2007, I began to feel pain in my right hip area and a subsequent scan showed I had a 4cm tumour growing on my right iliac crest. Previous scans in June and August 2007 had come back clear so it was a surprise to all off us especially the doctors that I could develop such a large tumour so quickly and that it hadn’t been picked up in earlier scans. Anyway I had 5 shots of radiation to the area and all was well. I started my taxol and herceptin treatment near the end of November 2007 and come January 2008 I started to have a lot of pain in my spine and pelvic region. I had a bone scan in January 2008 and it showed that I had developed several new metastases throughout my pelvic and spine region. My oncologist said that there was no way this could be cancer because according to him cancer doesn’t grow that fast so I went to another diagnostic imaging place and had a CT scan done on to check the earlier bone scan. The CT scan showed I had nearly 17 new growths throughout my pelvic and spine region. My oncologist then decided to stop my herceptin and taxol treatment saying that this was usual practice when someone had a progression and there was another drug available to try. At that stage I had had 3 doses of herceptin and 10 of taxol.

One of the breastcare nurses referred me to an oncologist who told me about the benefits of a new drug called Tykerb but said I would need to pay for it and that it cost $4000 per month but that I needed to pay for 4 months of it upfront before they would agree to give it to me, meaning I needed $16,000 to start treatment. I told her I needed to think about it and she told me not to take too long because she said the way my cancer was progressing I would be lucky to have more then a few months left. So I ended up going to a pharmacy a week later with $16,000 in cash [half of which a cousin who had just come into a huge inheritance had given me]. I felt like I was doing an illicit drug deal. Anyway when I went to give the pharmacist the money she told me the company Glaxo Smith Kline [GSK] had decided to give me the medication for nothing, I couldn’t believe it and burst into tears. So I never actually paid for this drug because until it was made freely available on the PBS in May 2008, GSK provided it to me free of charge.

After taking the Tykerb [which is 5 big tablets per day] for 2 months, I had an MRI in March 2008 and it came back clear apart from one lesion on my 4th lumbar disc and another on my left iliac crest. The rest had completely gone. Since then a new growth on my left iliac crest discovered in October was radiated in December and another new growth discovered in the ASIS [where the thigh bone fits into the hip socket] is to be radiated in May. Hopefully that will be the end of it for awhile.

ABOUT ME: Well thats my cancer story. As for me I am a New Zealander who has lived off and on in Australia for a total of 15 years now. I returned in May 2003 to Sydney, where I have spent most of that 15 years. I am single and have no children and have four brothers and one sister. I moved to Melbourne to live in March 2008 as at the time I did not think I had long to live and wanted to be close to my sister and her family in Mornington. I recently moved to Cairns as Melbourne was just too cold for me. I have a brother and sister in law here in Cairns and am really loving the consistently warm days.

In March 2008 I went on a 2 month holiday around Europe. I received an early pay out of my superannuation and returned to Europe for another 3 months. I also went to Egypt and Israel during that holiday. I had a great time overseas but the second holiday took alot out of me and energy wise it took me sometime to regain my health after I returned. However the trip was well worth it. I quite often sit back now and think of all the places I saw last year and all the good times I had. I also have alot of great stories to tell people about the trips and have really enjoyed sharing this experience with various family members and friends and acquaintances.

On the 29th of January ‘09 my world began to fall apart. After having a mammogram, ultrasound and biopsy on the same day it was confirmed I had breast cancer. On taking the results to my doctor I knew immediately my hip was involved and asked her for a bone scan. On the 4th of February it was revealed I had bone metastases. My sacrum, hips, pelvis, ribs and back were involved. I required nailing of my right femur to prevent it from breaking, on the 18th February. I have 2 types of cancer. My left breast is Herceptin -ve. My right breast is hormonal dependant. I was commenced on Femara, Herceptin and Zometa. After 3 months the Femara was stopped as it was not working. A few new cancer spots on my bones was noted. I have been on chemotherapy since, and at present my cancer is being held at bay.

ABOUT ME: I am a trained nurse. I have worked the majority of my life looking after people and now people are looking after me. It’s been a roller coaster ride. I get up each day and try to do the best I can.

ABOUT MY FAMILY: I have been married for 32 years and we recently moved to Brisbane to be closer to my children. My son is 32 and my daughter 27. luckily they are adults now. I loved my work till I became sick and had to leave. I am pleased to be in Brisbane and be able to receive my ongoing treatment.