Linda S

Hi, My name is Lindy, I am 30 years old, I live in Sydney, Australia with my husband, I love travelling (my favourite place is Rome), reading (my favourite book is 'The Secret Garden'), I work in finance for a wine company, enjoy spending time with my family, I like to play with my little dog, cook and go shopping for shoes...AND recently my best friend (My Mum) was diagnosed with NSCLC. I have been a visitor to this site (and others includng the Australian lungevity website at www.lungevity.com.au) for a few weeks and I am now ready to share my Mum's story. I would like to do this for 2 reasons; 1. For myself - I think it will have a cathartic effect to share what we have been experiencing thus far on this journey; provide a release of some sort and, 2. For Others - I have gained hope, inspiration and support from the stories shared by others on this site and would like to share our story (I say ‘our’ because although it is my Mum with the cancer, in some ways, it has 'happened' to the whole family) so that it too, may help others as I have been helped. Ok, so here it goes… (Apologies upfront, this is a rather verbose post) Some Background: No one in my family ever gets sick, in fact, no in my family dies of anything other than old age (only recently, my 2 great grandmothers peacefully passed away at the age of 102 and 99 years old). My Mum is 1 of 4 children; she has never smoked and never been around smokers. She is fit and active and everyone knows her by her nickname, ‘Action Maggie’ because she just never stops! Mum is a wife/friend to my Dad and has three kids; 2 girls (30 and 27) and a mischievous son, (20). Mum and Dad have worked very hard to build their business…us kids are older now so they want to start to travel and they just got council approval to build their dream home…then this happened…(I suppose it doesn’t happen at a goo time, never is the best time). The Diagnosis: Mum’s cancer got ‘found out’ much the same way as others’ – it was an accident. Something unrelated provoked a test which revealed this asymptomatic terror in her body. * 30 Mar-09 – Mum has a sharp pain in her chest and goes to Ryde Hospital at around 11pm. They do some tests including an x-ray and tell her she is ok to go home and to take some pain killers. * 13 May-09 – Mum gets a phone call on the way home from work from the medical centre where her GP is. The Doctor asks her to immediately come to see her. She says she’s busy can it wait until tomorrow to which the Doctor replies ‘no please come now’. The Doctor explains that she found a letter ‘floating around’ with my Mum’s name on it. The letter is dated 30 March 2009, the day she got her x-ray. It was not addressed to anyone and that’s why it was lost in the paperwork. The Doctor explains that the letter states there is urgent attention required (may be a pulmonary neoplasm, CT scan required) as there appears to be a 35mm lesion on her right lung. My Mum says that there must be a mistake because the hospital told her she is ok and she should go home and take a Panadol. There is way to check, says the Doctor, and a repeat x-ray is ordered. At the same time, the Doctor calls the hospital to request more information and they fax another letter, dated the same date as the first letter, stating that there is nothing remarkable on the x-ray…in my opinion, a complete break-down in hospital controls where there are 2 conflicting reports and no one has contacted the patient! 6 critical weeks were lost, time which could have been spent on treatment... (This is being investigated further and I’ll let you know how we go with it but in the meantime, were looking forward. The hospital didn’t cause the cancer, but they could have played a key role in its earlier identification. * 14 May-09 – Mum gets another x-ray. Same thing – a spot on the lung. That same day, Mum sees a respiratory specialist. A biopsy is ordered. * 18 May-09 – CT guided biopsy performed. * 20 Mar-09 – Back to the Respiratory Specialist for the results. The worst is confirmed. It’s malignant and its name is adenocarcinoma. The respiratory specialist gives Mum hope – she says that you need to be positive as this makes a big difference. I think she also 'prematurely' offers her hope of surgery without having done the work up and without understanding if the extent, if any, of lymph node involvement. * 25 May-09 – A CT-PET scan is performed. Around this time, she also starts to feel pain in her back. She describes it as sharp stabbing pains. * 26 May-09 – Mum does a lung function test so they can see if she would be fit for surgery. * 27 May-09 – We all go to get the results (Mum, Dad, and us three kids). Well there is some good news – it hasn’t spread outside the lungs, but, it has spread to some lymph nodes. It appears to be a Stage IIIA. (I rush home and jump onto the internet, a Google search tells me the prognosis is very poor, I despair but then I find this site and I find some hope because I see so many lomg term survivors of advanced stage disease!). Chemo is expected to start next week, followed by surgery. * 1 Jun-09 – We meet the Oncologist. He says he would like Mum to have a mediastinoscopy. This will provide a ‘pathological’ diagnosis and well help map out a more accurate treatment plan which may involve surgery first, then chemo or maybe chemo then surgery. * 2 Jun-09 – We meet the thoracic surgeon and the mediastinoscopy is performed. Mum spends 3 days in hospital recovering. * 5 Jun-09 – The thoracic surgeon requests a CT scan and Mum gets it done. * 10 Jun-09 – We meet both the Oncologist and Respiratory physician so we can find out when treatment will start. The nervousness is mounting – it’s been a 4 weeks since it was discovered (10 weeks since it should have been discovered) and no treatment has begun. The Doctors tell us they have some bad news, the CT scan showed a bi-lateral pleural effusion. This means surgery is ruled out. (I wondered why the thoracic surgeon wasn't in this meeting...) Mum is re-staged to IIIB ‘wet’. A new plan is developed, one which no longer includes surgery (which had been touted as the best chance for a cure). Mum is to have concurrent chemo and radiotherapy. Later the same day, we meet the Radiotherapy Oncologist. He tells us the prognosis is very poor. He tells us Mum will most likely die in 12 months if she has no treatment and 14 months with treatment. He tells us there is little hope for a cure. He destroys the positive thoughts which we had lovingly planted in my Mum’s mind – we will just have to start again and plant some more! Treatment: * 12 Jun-09 an old friend who Mum has not seen in over 5 years comes to visit. She has heard the news and insists that Mum see the Traditional Chinese Medicine (TCM) Doctor who helped her husband overcome prostate cancer. That same day, Mum asks for an appointment and the Doctor fits her in that night. He tells her that he will help her T-cells fight the cancer – he will ‘wake up her guard dogs’ in her body to fight away the bad cells. Mum starts to see the TCM Dr weekly and he makes her feel better and makes her laugh. She has weekly acupuncture and she takes 5 different types of Chinese herbals pills (little black ones, 11 of each, 3 times per day!). The pain is gone! (Is it the herbs or is it the placebo effect?) She also changes her diet. Now she does not meat any red meat, dairy, potatoes or eggplant. She eats organic food as much as possible, lots of fresh salmon (no tuna) and chicken and legumes especially munga beans. * 17 Jun-09 – FINALLY, treatment starts with the concurrent chemo (carboplatin + taxol) and radio regime. Weekly chemo and daily radio. We show the Ocologist the herbs Mum is taking to make sure it does not impact the chemo. All is good and the Oncologist is supportive of Mum’s decision to use complementary TCM. I discover an online world of lung cancer survivors, fighters and carers and tap into the online resources. I start to do my own research. I subscribe to various thoracic journals, oncology journals, medical research search engines, articles, and read clinical trials on treatment approaches, drugs, and complementary therapies. I find the cancergrace website and tap into other online forums an sites. I start to ask lots and lots of questions. * Why didn’t we test the fluid to check it was malignant? * If Mum responds well to chemo/radio and the tumour shrinks and the lymph nodes are sterilized, can we have surgery afterwards? (No, once you have radio on the mediastinum area, most thoracic surgeons won’t want to operate on you – too risky). * So why did we close the door on the surgery option and start radio if we are not sure if it is malignant? Does this not restrict our treatment options? * How did this pleural effusion so suddenly develop? It was not there on 27 Mar-09 on the CT-PET but somehow only appeared a week later after the mediastinoscopy on the CT scan. * Is it common to get a bi-lateral pleural effusion when the tumour is localised on only 1 side? * What about my Mum’s rheumatoid arthritis – can it cause a pleural effusion? * Is it possible that surgery related trauma could have caused the pleural effusion seeing as though it only appeared days after the mediastinoscopy? * Oh and by the way, why did it take so long to start treatment? * How many patients have you treated with carbo+taxol (answer: 9), How many of them were the same stage and age as my Mum (the answer was none - can you believe that!) Where I was scared of learning about what this cancer is, now I feel armed with the knowledge that there are others who have been down this very same road that my Mum and my family are on. Now I am in battle mode for Mum. This is not going to happen to our family without a real fight! We have a family meeting at Mum & Dads house. We decide together as a family that we are not going to accept the prognosis form the Doctors. They have based it on statistics and Mum is not a statistic. I decide that I will take Mum for a 2nd opinion. I manage to get an urgent appointment for 19 Jun-09. *19 Jun-09 – Mum and I see another thoracic surgeon. He looks through Mum’s file and scans and says that he will talk to Mum’s current Doctor’s then call Mum back with what he thinks. Later that afternoon, we get a call from the Doctor with the 2nd opinion. He agrees that there is a chance the pleural effusion is not malignant. Mum is a good candidate for surgery – she is young, fit, otherwise healthy and hasn’t lost too much weight, the lymph nodes on the opposite side of the tumour are clear, and if the pleural effusion is not malignant (which we will test after the chemo) then there is a good chance that she could have surgery. BUT we would need to immediately stop the radiotherapy. Mum has the weekend to decide what to do as her next radiotherapy session is early Monday morning…So do we stop concurrent chemo+radio in hope for surgery that may not even be a possibility and risk further spread in the interim whilst neo-adjuvant chemo is pursued OR do we continue with the current journey and close the door on future potential for surgery? We (Mum) chooses to stop radiotherapy, we change Doctors and we change hospitals. My Mum is now under the 2nd Opinion Doctor’s care…the other Doctors are all very supportive and understand Mum’s decision. They are interested in her progress and want to be copied in on future reports. They care for Mum until she is ‘handed’ over to the new hospital… * 26 Jun-09 – the new chemo regime starts. Still carbo+taxol but the dose is 3.5 times stronger than when it was being taken with concurrent radio. Now it’s once every 3 weeks. Mum is taking her herbs 3 times per day. We also find another one called PSK (a mushroom) which the Chinese Doctor is ok with. It’s been 2 weeks since chemo and Mum has had no side effects (just one day of fatigue, 6 days after chemo) – life is great and she is doing all the things she would normally do. We start to keep a food log book to track what Mum eats because she has dropped down from 68kg to 63kg in the last 8 weeks. Someone on the cancercompass website suggested peanut butter and banana and honey on brown wholemeal bread is a good snack and soy milk smoothies with ginger, banana, orange and apple is a good one as a desert. I also add soy protein powder to the soups that I make for Mum (another suggestion from a survivor on the internet). * 8 Jul-09 – We meet the new Oncologist who will be taking over from the next round of chemo. He listens to Mum’s chest and tells her it sounds clear. He thinks the fluid may be gone (but that we will see when we have the follow up scan). Mum says that she is no longer breathless when she runs up the stairs. He tells us that Mum will do 3 rounds of chemo then have a CT scan to see how things are going. Depending on the scan, Mum will have another final round before surgery. He says we need to take it one step at a time. It all depends on if the cancer tumour shrinks or not… * 17 Jul-09 - 2nd round of carbo+taxol with the 3 week cycle at the new hospital. Mum weighs in at 67.8 kgs, the weight she's lost is back... * 18 Jul-09 - Mum is running around feeling as though she has never had cancer * 20 Jul-09 - She's starting to get a little tired now...but spirits are high * 7 Aug-09 - Round 3 of chemo. Blood works are all good, Onc comments on how quickly her blood count recovers. * 20 Aug-09 CT scan to determine whether chemo is working. Appointment is booked for Monday 24th August. A whole weekend of worry ahead... * 22 Aug-09 I spend ALL day and night researching on the internet about how to read a CT scan...The scan is with Mum, in the boot of the car...I tkae it out, compare it to the one taken when she was first dx...I cant see any liquid in her lungs and the tumor looks tiny - we'll knwo for sure on Monday... * 24 Aug-09 - OMG! The day has come!! The words we were praying for come from the Onc..."great response"..Pleural effusion is GONE! Tumor has shrunk!!! Mum will have one more round of chemo on Friday 28th then a follow-up CT-PET on 3 weeks then re-staged the SURGERY! So glad we changed Doctors and hospitals...from "you have 12 months at best to live" ... to "the chemo is doing its job"...Still a tough road ahead...a right sided pneumonectomy is no walk in the park...(hopefully its a bilobectomy but wont know till we see the thoracic surgeon in a couple of weeks time)... Well - that was a mouthfull! This is where we are at. My ritual after coming home from work, cooking then clearing up after dinner is to log onto this site and reads the new posts, scan for the latest oncology journals for relevant articles, then read the new posts on cancergrace - I keep reading stories of hope and it gees us up for the path ahead. Thanks everyone for being part of this online community and helping (without even realising) people like my Mum and I. Linda

Thank you everyone for your welcoming posts. Its 7:50am here in Sydney and I have woken up to your wonderful, caring suport. I'm not as scared any more (well...at the moment anyway...). Whenever a question is posted, there seems to be someone thats been there or felt it before. It just makes me more determined to try and raise the profile of this disease in Australia where there is little funding and still a stigma attached to this disease. Reece - have made the edits to the date typo whch your fine eye picked up - thanks! L x

Hi, My name is Lindy, I am 30 years old, I live in Sydney, Australia with my husband, I love travelling (my favourite place is Rome), reading (my favourite book is 'The Secret Garden'), I work in finance for a wine company, enjoy spending time with my family, I like to play with my little dog, cook and go shopping for shoes...AND recently my best friend (My Mum) was diagnosed with NSCLC. I have been a visitor to this site (and others includng the Australian lungevity website at www.lungevity.com.au) for a few weeks and I am now ready to share my Mum's story. I would like to do this for 2 reasons; 1. For myself - I think it will have a cathartic effect to share what we have been experiencing thus far on this journey; provide a release of some sort and, 2. For Others - I have gained hope, inspiration and support from the stories shared by others on this site and would like to share our story (I say ‘our’ because although it is my Mum with the cancer, in some ways, it has 'happened' to the whole family) so that it too, may help others as I have been helped. Ok, so here it goes… (Apologies upfront, this is a rather verbose post) Some Background: No one in my family ever gets sick, in fact, no in my family dies of anything other than old age (only recently, my 2 great grandmothers peacefully passed away at the age of 102 and 99 years old). My Mum is 1 of 4 children; she has never smoked and never been around smokers. She is fit and active and everyone knows her by her nickname, ‘Action Maggie’ because she just never stops! Mum is a wife/friend to my Dad and has three kids; 2 girls (30 and 27) and a mischievous son, (20). Mum and Dad have worked very hard to build their business…us kids are older now so they want to start to travel and they just got council approval to build their dream home…then this happened…(I suppose it doesn’t happen at a goo time, never is the best time). The Diagnosis: Mum’s cancer got ‘found out’ much the same way as others’ – it was an accident. Something unrelated provoked a test which revealed this asymptomatic terror in her body. * 30 Mar-09 – Mum has a sharp pain in her chest and goes to Ryde Hospital at around 11pm. They do some tests including an x-ray and tell her she is ok to go home and to take some pain killers. * 13 May-09 – Mum gets a phone call on the way home from work from the medical centre where her GP is. The Doctor asks her to immediately come to see her. She says she’s busy can it wait until tomorrow to which the Doctor replies ‘no please come now’. The Doctor explains that she found a letter ‘floating around’ with my Mum’s name on it. The letter is dated 30 March 2009, the day she got her x-ray. It was not addressed to anyone and that’s why it was lost in the paperwork. The Doctor explains that the letter states there is urgent attention required (may be a pulmonary neoplasm, CT scan required) as there appears to be a 35mm lesion on her right lung. My Mum says that there must be a mistake because the hospital told her she is ok and she should go home and take a Panadol. There is way to check, says the Doctor, and a repeat x-ray is ordered. At the same time, the Doctor calls the hospital to request more information and they fax another letter, dated the same date as the first letter, stating that there is nothing remarkable on the x-ray…in my opinion, a complete break-down in hospital controls where there are 2 conflicting reports and no one has contacted the patient! 6 critical weeks were lost, time which could have been spent on treatment... (This is being investigated further and I’ll let you know how we go with it but in the meantime, were looking forward. The hospital didn’t cause the cancer, but they could have played a key role in its earlier identification. * 14 May-09 – Mum gets another x-ray. Same thing – a spot on the lung. That same day, Mum sees a respiratory specialist. A biopsy is ordered. * 18 May-09 – CT guided biopsy performed. * 20 Mar-09 – Back to the Respiratory Specialist for the results. The worst is confirmed. It’s malignant and its name is adenocarcinoma. The respiratory specialist gives Mum hope – she says that you need to be positive as this makes a big difference. I think she also 'prematurely' offers her hope of surgery without having done the work up and without understanding if the extent, if any, of lymph node involvement. * 25 May-09 – A CT-PET scan is performed. Around this time, she also starts to feel pain in her back. She describes it as sharp stabbing pains. * 26 May-09 – Mum does a lung function test so they can see if she would be fit for surgery. * 27 May-09 – We all go to get the results (Mum, Dad, and us three kids). Well there is some good news – it hasn’t spread outside the lungs, but, it has spread to some lymph nodes. It appears to be a Stage IIIA. (I rush home and jump onto the internet, a Google search tells me the prognosis is very poor, I despair but then I find this site and I find some hope because I see so many lomg term survivors of advanced stage disease!). Chemo is expected to start next week, followed by surgery. * 1 Jun-09 – We meet the Oncologist. He says he would like Mum to have a mediastinoscopy. This will provide a ‘pathological’ diagnosis and well help map out a more accurate treatment plan which may involve surgery first, then chemo or maybe chemo then surgery. * 2 Jun-09 – We meet the thoracic surgeon and the mediastinoscopy is performed. Mum spends 3 days in hospital recovering. * 5 Jun-09 – The thoracic surgeon requests a CT scan and Mum gets it done. * 10 Jun-09 – We meet both the Oncologist and Respiratory physician so we can find out when treatment will start. The nervousness is mounting – it’s been a 4 weeks since it was discovered (10 weeks since it should have been discovered) and no treatment has begun. The Doctors tell us they have some bad news, the CT scan showed a bi-lateral pleural effusion. This means surgery is ruled out. (I wondered why the thoracic surgeon wasn't in this meeting...) Mum is re-staged to IIIB ‘wet’. A new plan is developed, one which no longer includes surgery (which had been touted as the best chance for a cure). Mum is to have concurrent chemo and radiotherapy. Later the same day, we meet the Radiotherapy Oncologist. He tells us the prognosis is very poor. He tells us Mum will most likely die in 12 months if she has no treatment and 14 months with treatment. He tells us there is little hope for a cure. He destroys the positive thoughts which we had lovingly planted in my Mum’s mind – we will just have to start again and plant some more! Treatment: * 12 Jun-09 an old friend who Mum has not seen in over 5 years comes to visit. She has heard the news and insists that Mum see the Traditional Chinese Medicine (TCM) Doctor who helped her husband overcome prostate cancer. That same day, Mum asks for an appointment and the Doctor fits her in that night. He tells her that he will help her T-cells fight the cancer – he will ‘wake up her guard dogs’ in her body to fight away the bad cells. Mum starts to see the TCM Dr weekly and he makes her feel better and makes her laugh. She has weekly acupuncture and she takes 5 different types of Chinese herbals pills (little black ones, 11 of each, 3 times per day!). The pain is gone! (Is it the herbs or is it the placebo effect?) She also changes her diet. Now she does not meat any red meat, dairy, potatoes or eggplant. She eats organic food as much as possible, lots of fresh salmon (no tuna) and chicken and legumes especially munga beans. * 17 Jun-09 – FINALLY, treatment starts with the concurrent chemo (carboplatin + taxol) and radio regime. Weekly chemo and daily radio. We show the Ocologist the herbs Mum is taking to make sure it does not impact the chemo. All is good and the Oncologist is supportive of Mum’s decision to use complementary TCM. I discover an online world of lung cancer survivors, fighters and carers and tap into the online resources. I start to do my own research. I subscribe to various thoracic journals, oncology journals, medical research search engines, articles, and read clinical trials on treatment approaches, drugs, and complementary therapies. I find the cancergrace website and tap into other online forums an sites. I start to ask lots and lots of questions. * Why didn’t we test the fluid to check it was malignant? * If Mum responds well to chemo/radio and the tumour shrinks and the lymph nodes are sterilized, can we have surgery afterwards? (No, once you have radio on the mediastinum area, most thoracic surgeons won’t want to operate on you – too risky). * So why did we close the door on the surgery option and start radio if we are not sure if it is malignant? Does this not restrict our treatment options? * How did this pleural effusion so suddenly develop? It was not there on 27 Mar-09 on the CT-PET but somehow only appeared a week later after the mediastinoscopy on the CT scan. * Is it common to get a bi-lateral pleural effusion when the tumour is localised on only 1 side? * What about my Mum’s rheumatoid arthritis – can it cause a pleural effusion? * Is it possible that surgery related trauma could have caused the pleural effusion seeing as though it only appeared days after the mediastinoscopy? * Oh and by the way, why did it take so long to start treatment? * How many patients have you treated with carbo+taxol (answer: 9), How many of them were the same stage and age as my Mum (the answer was none - can you believe that!) Where I was scared of learning about what this cancer is, now I feel armed with the knowledge that there are others who have been down this very same road that my Mum and my family are on. Now I am in battle mode for Mum. This is not going to happen to our family without a real fight! We have a family meeting at Mum & Dads house. We decide together as a family that we are not going to accept the prognosis form the Doctors. They have based it on statistics and Mum is not a statistic. I decide that I will take Mum for a 2nd opinion. I manage to get an urgent appointment for 19 Jun-09. *19 Jun-09 – Mum and I see another thoracic surgeon. He looks through Mum’s file and scans and says that he will talk to Mum’s current Doctor’s then call Mum back with what he thinks. Later that afternoon, we get a call from the Doctor with the 2nd opinion. He agrees that there is a chance the pleural effusion is not malignant. Mum is a good candidate for surgery – she is young, fit, otherwise healthy and hasn’t lost too much weight, the lymph nodes on the opposite side of the tumour are clear, and if the pleural effusion is not malignant (which we will test after the chemo) then there is a good chance that she could have surgery. BUT we would need to immediately stop the radiotherapy. Mum has the weekend to decide what to do as her next radiotherapy session is early Monday morning…So do we stop concurrent chemo+radio in hope for surgery that may not even be a possibility and risk further spread in the interim whilst neo-adjuvant chemo is pursued OR do we continue with the current journey and close the door on future potential for surgery? We (Mum) chooses to stop radiotherapy, we change Doctors and we change hospitals. My Mum is now under the 2nd Opinion Doctor’s care…the other Doctors are all very supportive and understand Mum’s decision. They are interested in her progress and want to be copied in on future reports. They care for Mum until she is ‘handed’ over to the new hospital… * 26 Jun-09 – the new chemo regime starts. Still carbo+taxol but the dose is 3.5 times stronger than when it was being taken with concurrent radio. Now it’s once every 3 weeks. Mum is taking her herbs 3 times per day. We also find another one called PSK (a mushroom) which the Chinese Doctor is ok with. It’s been 2 weeks since chemo and Mum has had no side effects (just one day of fatigue, 6 days after chemo) – life is great and she is doing all the things she would normally do. We start to keep a food log book to track what Mum eats because she has dropped down from 68kg to 63kg in the last 8 weeks. Someone on the cancercompass website suggested peanut butter and banana and honey on brown wholemeal bread is a good snack and soy milk smoothies with ginger, banana, orange and apple is a good one as a desert. I also add soy protein powder to the soups that I make for Mum (another suggestion from a survivor on the internet). * 8 Jul-09 – We meet the new Oncologist who will be taking over from the next round of chemo. He listens to Mum’s chest and tells her it sounds clear. He thinks the fluid may be gone (but that we will see when we have the follow up scan). Mum says that she is no longer breathless when she runs up the stairs. He tells us that Mum will do 3 rounds of chemo then have a CT scan to see how things are going. Depending on the scan, Mum will have another final round before surgery. He says we need to take it one step at a time. It all depends on if the cancer tumour shrinks or not… * 17 Jul-09 - 2nd round of carbo+taxol with the 3 week cycle at the new hospital. Mum weighs in at 67.8 kgs, the weight she's lost is back... * 18 Jul-09 - Mum is running around feeling as though she has never had cancer * 20 Jul-09 (TODAY) - She's starting to get a little tired now...but spirits are high Well - that was a mouthfull! This is where we are at. My ritual after coming home from work, cooking then clearing up after dinner is to log onto this site and reads the new posts, scan for the latest oncology journals for relevant articles, the read the new posts on cancergrace - I keep reading stories of hope and it gees us up for the path ahead. Thanks everyone for being part of this online community and helping (without even realising) people like my Mum and I. Linda