HI Barbe Dr Buckingham is fabulous - reassured me that the radiologist got it right and he's 90% sure (apparently there's a 10% margin for error) that the calcifications are benign. Given his extensive experience with breast cancer, I'm confident that he knows his stuff and can put it all to the back of my mind now and concentrate on Andrew's mum.  In hindsight I guess I've been a bit irrational about it all, but haven't wanted to end up in the same boat as his mum is at the moment.  We have been absolutely overwhelmed by the amount of support and services available to her. She had a constant stream of visiting professionals (eg occ. therapist, social worker, lung cancer coordinator etc) while she was in hospital last week after first cycle of chemo + breathing probs.  We're now fully boned up on what's out there to help her through this awful journey of hers and what's available to us to help her as well. She started her journey with the Cancer Council's Lilier Lodge in Wagga for her first treatment and they were fantastic. Take care Zoe ... View more

Hi Margaret, Mikey et al It's been some time since I've posted on here or even had a chance to get on the website and catch up on others' journies. I hope Margaret that you have had success getting on top of your beastie. Sadly today my mother in law lost her 14mth battle with the beastie, exactly one month before she turns 61. The last 3mths have been horrible for her, however, the 2wks before her last visit to hospital then hospice, she was able to be back in her own home (she'd been staying with us)....  managed because my sister-in-law (her daughter) and granddaughter took on her care to enable her to be in her own home. The pal care nurses and docs have been just wonderful.  We almost came to fisticuffs today as her wish had been to be unaware/sedated during her final days - the doctor agreed and wrote her up accordingly, but the nurses on shift this morning had their own ideas.  Needless to say it was an immensely distressing time for her and for the family to watch her suffering. At the time of the last episode we thought the pain and anxiety (she watched her husband die the same way 5yrs ago, so knew what she was in for) were overwhelming her, however, she passed away after we were booted out of her room and her expression seemed very peaceful. No more pain and suffering!!!  On reflection we hope it was more her final effort to hug Karen and Andrew than flailing around. This bastard disease is horrible and we fail to understand why the public education campaigns on tv don't have an ad with a passive smoker in it.  We wrote to the NSW Cancer Institute about the last lot of ads (they had about 5 different ones that rotated on tv) and never received a reply.  Once we find out which organisation/govt dept is doing the current one (with the father sitting inside watching his kids play outside, saying he wished he'd given up smoking before it was too late), we'll be writing to them too....  The statistics show that well over 50% of lung disease sufferers are non-smokers!!!! During the last year it has been a difficult journey which you are all going through yourselves. I wanted to say a big thank you to everyone who contributes to these forums - they have been a good coping mechanism and learning aid for us - sadly so many people are affected by cancer - themselves or someone they love.  We've been so grateful to our workmates and bosses - who have been incredibly supportive.  We are aware that many folks are not so lucky. Take care all and best of luck in your journies. ... View more

Hi all Just floating around the website and wanted to post a message about Lilier Lodge in Wagga Wagga. I stayed with my rellie who was receiving radiation at the Riverina Cancer Care Centre in Wagga and can't speak highly enough of Lilier Lodge. Their fees are set at the IPTAAS amount ($36 single per night), so you can still put in your IPTAAS form at the end of the treatment and hopefully get a full refund... but even if you don't, then at least $36/night is affordable. Lilier Lodge is not very old and was built by the Cancer Council on community donations. It's a single storey building and great facilities.  The rooms can seem quite sterile/like a motel room, but there are great recreational facilities and a communal kitchen/dining area. Christine, the manager and other staff of Lilier Lodge are available to talk to and are very emotionally supportive. They are also great at giving you the good oil on Wagga so you know where to find places, shops, the all important Medicare office etc etc. My mother in law was hospitalised with bad reactions to the radiation, and both Lilier Lodge and onco nurses at Riverina Cancer Care Centre were wonderfully supportive during that difficult time. Coming from Canberra (Cbr radiation oncology were renovating at the time and had a waiting list), the emotional support and advice they gave us were invaluable.  A bus was also run to and from the lodge and cancer centre, so that patients were easily transported.  It was only about a 10min walk, but not viable to patients who were knackered from their treatments. My mother in law is getting her second dose of palliative radiation in Canberra this time, and being a much bigger unit, it is not a personal experience like it was in Wagga.  Plus the parking is atrocious so we drop her off at the entrance and spend 10mins looking for a park. Hats off to Lilier Lodge!  ... View more

Hi Mike Many thanks for the info.  I've printed off the palliative Q's booklet and hoping that my M-I-L will touch base with the palliative care folk. Her oncologist has sent them the referral and they've touched base since we returned from Wagga.... but now that the reality seems to be fast approaching, she is reluctant to get the ball rolling.... although is very clear about wanting to have as normal a life as long as possible.  Unfortunate that my hubby's dad died 5 1/2yrs ago from throat cancer and his mum was the main carer.  His dad was in denial right up to the end and didn't want help, yet his mum seems to have accepted it all and has been talking about making arrangements.  However now that it appears she can't cope on her own, she's become very antsy about it all.  Hard to know whether to push it or not.  She's been 'holidaying' with us since Wagga but went back to her home on the weekend to trial being on her own again before going back to work (she really wants to do this, but whether her body will keep up with her mind is another matter). Sorry to rabbit on... we're back off to the oncologist on Thursday so will have a good chat to her. Failing that we'll suggest talking to the palliative care folks with her together.   cheers ... View more

Hi folks Hope everyone's week has started out well.  Life has whizzed by at an alarming rate this month, where has the time gone. Good news I think - the biopsy of the 'cyst' showed that it is a solid mass, but a benign mass The jury's still out on the calcifications - they weren't able to do FNA as they couldn't feel them, so went back to doc to get another form for a ultrasound guided FNA....  At imaging I'd disrobed ready for it when they decided they couldn't do it because they wouldn't be able to see the calcifications under ultrasound (it was picked up on mammogram).  Hmmmm... I wonder why they bothered booking me in if they knew they wouldn't be able to do it. So I'm waiting to see Dr John Buckingham next week; the imaging folks recommended seeing him as he has a great rep as a breast specialist. 99% sure all will be well and I'm being a bit irrational about it all, but I look at my mum in law whose initial diagnostics came up clear and everyone patted her on the head (she looked well until she started radiation), dismissing her concerns.  Then when the biopsy came back with the bad news, the month inbetween scans was enough time for it to metastasise and become inoperable/incurable.  And she doesn't fall into any risk groups, non-smoker, no history in the family, very healthy etc etc. She's started acupuncture to help with the pain and its remarkable how much benefit she gets from it. Although it doesn't last long, its great to see her face relaxed when she finishes. take care Zoe ... View more

Hi folks If you're looking for more specific information, resources and support just for lung cancer & disease patients and their carers. www.lungevity.com.au   The lungevity forum has been really helpful - the members are lung cancer sufferers and survivors who have been around the block with medications, treatments etc.  Very supportive group. I've only joined it recently, but am finding it very helpful to talk to Matt and other members.  For example we've found out about various trials that my rellie could be eligible for. Cancer can be such an isolating disease for the sufferer and their family, however, forums such as the cancer councils and lungevity bridge the isolation and make you feel part of a community again. Take care all Zoe ... View more

Hi ladies Thanks for your responses. Its hard to ask friends but Mum has been great keeping the worries away as she reassured me there's no history in the family and although she had a lot of trouble with cysts and fibroadenomas in her early 20s, they were all benign and no problemmo after being removed and/or aspirated. Well, it was a mixed bag on Tuesday at pathology and it turns out I wasn't imagining things after all. They did find a 7mm ovoid cyst on my right breast where I could feel something... but apparently it's no cause for concern as it's not solid. But.... they found calcifications on the left breast and kept asking me if I had any pain or felt anything. (which I haven't) Not sure what to make of it - the report says 'there are several benign type calcifications in the left breast' which I understand to be that they look benign in appearance (???) Was pleasantly surprised with the mammogram - I'd gone in with all the horror stories about squished boobies. The mammographer was really sensitive to the situation and the compression pain was less than 5 seconds each time as she released it pretty much straight away after lining it up.  The magnification plate did hurt but again <5secs.  Started to get a bit freaked out though when the radiographer ran out to get the doc in during ultrasound. They had a bolded statement under the findings on the report, saying that not all breast cancers can be found by imaging alone and negative imaging should not deter further investigation of clinically suspicious findings.  So I read that to say although they determined a benign type calcification, the findings were clinically suspicious. I went to the GP yesterday to ask for a form to have a fine needle aspiration done (reading on the nbocc website etc they recommend the 'triple test' be done) and the GP gave the impression she thought I was going overboard about it all.  Never mind the fact that we go to the same GP practice that my mum-in-law does, and she asked after her before I launched into my probs. 90% of me is reassured that there'll be nothing to worry about, knowing there's no history in the family, however, after my mum-in-laws early diagnostics coming up clear, then a CT scan picking up her lung cancer (then PET scan picking up the metastases), I've lost a lot of confidence in imaging. So I'm booked in for the fine needle biopsy next Wed. Do the results normally come back fairly quickly or do they spend a few days testing the samplings??? Focussed on the 'benign' in the reports and have shown my hubby, but haven't troubled him with what's going around and around in my head as he has enough going on with his mum without worrying over 'what ifs' with me.  Positive thinking and a bottle of wine! On a bright note, his mum is off to Great Kepple Island on Saturday with a close friend and her family for a week... Just the thing she needs at the moment, plus some fresh air and sunshine.  She's reacting badly to the radiation again and the pain has worn her down, so hopefully she'll be able to enjoy the whole holiday.  Her friend is a vet so we know she'll be in good hands if they need to get her medivac'd back tothe mainland. Take care all Zoe ... View more

Hi Dianne et al We feel for you, the doctors can be very insensitive and the stigma surrounding lung cancer is so unfair!  How have you been faring over the festive season?  We've found it hard to put on a cheery face and had a quiet xmas at home. My mother in law had a great day with the grandkids around and said it was her most relaxing xmas ever  (being a dog groomer she normally worked right up to xmas eve in the evening). You are right, there has to be survivors out there, no reason why you can't be one of them!  If you have time, get onto the lungevity forum and request the lungevity stories book - there is a story in there from Liz (and you can also reach her on the forum)....  She has stage 4 NSCLC too and participated in the Zometa trial....  Zometa is normally given to breast cancer patients for bony mets, but she was able to get on the trial.  She had such good results with her bony mets.  Erika nagged and nagged her onco until he sought approval to give her Zometa (it's still expensive)... unfortunately she had a bad reaction to her first infusion, which means no more for her. Young Matt was so inspiring.... he was an incredible advocate for lung cancer patients educating themselves (you are right that the docs just want to pigeonhole you into terminal and curable, then chart you on a stock standard plan of action) and fighting for the right to new treatments etc.  My mother in law only smoked for a yr or so when she was 18-19 and her lung cancer is either from passive smoking (her hubby died 7yrs ago fm throat cancer - was a heavy smoker) or industrial / job related (worked in vet industry).  Sad that my sister-in-law's hubby's dad has also recently been diagnosed with terminal lung cancer and he's a smoker, although it shouldn't matter whether people are or not!  There's such a stigma that you feel you have to justify statements all the time. The recent ads that were on tv were really upsetting as the ads were about blaming the cancer sufferer with smoking etc, but they didn't highlight the high statistics of passive smokers/non-smokers who get lung cancer.... We wrote off to the cancer council institute of NSW who made the ads.... haven't yet received a reply but noticed the ads are no longer running... so not sure if coincidence or not. Very alarming to read statistics of the high number of non-smokers who get lung cancer or lung disease!! Erika went to one of the look good feel better workshops and felt out of place as everyone except her and one other lady were breast cancer sufferers....  You're right to feel 'jealous' as there seems to be so much public awareness and support of breast cancer, yet so little of other cancers. Sorry for ranting and raving...  world is upside down again with Erika's rapid decline 4wks ago... new bony met in her left shoulder blade, with uncontrollable pain.  She went into the hospice (god bless those nurses and volunteers!) the week before xmas and they still haven't got on top of the pain yet... they are increasing her morphine and ketamine dosages on a daily basis, yet the pain seems to be escalating quicker than they can increase the pain meds. The irony of this all is that her primary in the lung has just about disappeared and she doesn't have any symptoms/breathing probs from it at all.... her symptoms come from her bony mets and associated bowel probs and nausea with high level of analgesics.... movicol is such a necessary evil. We're finding it really helpful to chat to the nurses and volunteers at the hospice, to deal with everything going on.  Erika feels the cancer has finally overwhelmed her, yet the docs and nurses feel she'll be ok once they get on top of the pain. I hope you are all able to spend time with your families and friends over the festive season. Take care Zoe ... View more

Hi all This is our first time on the forum - recommended by the wonderful folk at the Riverina Cancer Care Centre and Lilier Lodge in Wagga Wagga. Heart warming to find out that both facilities were community projects, especially after an unfortunate experience at Wagga Base hospital, which is very outwardly under resourced. My husband's mother turned 60 this month and was diagnosed just before xmas with stage 4 small cell lung cancer.  Unfortunately it metastasised between diagnosing CT scan and PET scan (damn those public holidays!) into her sacrum, mediastinum and lymph nodes.  Sadly this means it is inoperable and incurable, which we're all still trying to come to terms with. She's just completed palliative radiation treatment, which really knocked her around.  The kicker to all of it is she doesn't smoke and up until the radiation, was a very fit and healthy person. The cough that didn't go away was written off by the GP and specialist as a nasty infection... even when she started coughing up fresh blood they didn't think to send her off for a chest xray etc.  Because she's not a smoker and 'looked so well', they didn't think it was worthwhile doing any investigative scans etc. Haven't built the bridge yet... but if there's anyone out there who is in a similar situation, we would be grateful for any ideas on how you coped and/or what was helpful to the person you cared for. It's hard to know what to say as there's no hope of recovery.  We've tried to focus on enjoying each day and have been able to cross a couple of luxuries off her list (short trip to NZ, hot air ballooning etc).  The docs reassured her that her health should improve about 3wks after last radiation treatment, but she's been so ill from it that she fears she won't get back to where she was. ... View more

Hi Helen Thanks for your msg. I've finally gotten around to ringing the helpline and the lady I spoke to was very helpful. She's sending out the info on Tarceva, trials etc and in the interim I'll ring the lung care coordinator at the Cbr Hospital (her onco is on leave at present). cheers Zoe ... View more