Scanxiety - does it ever REALLY go away?
Does Scanxiety ever really disappear? I think not. It is 4 years in Nov since my ILC tumours were found, by accident, by my GP - as the rural BreastScreen Bus screens totally missed it ..... TWICE. Rural breastscreen buses do not have 3D mammograms - only 2D ones - and they are unlikely to pick up Invasive Lobular Cancer (that does not present as a 'lump' ....) and any cancer is almost impossible to 'see' in those with Dense Breast Tissue. If you don't know what breast tissue type you have, get your Surgeon/Oncologist to tell you - as Breast Screen NSW refuses to do so. If you are able to pull up a pic of your Mammograms .... you'll actually SEE if you have dense breast tissue, as much of the breast will showing as 'white' (rather than fairly clear) and as cancer also shows up as 'white' ..... the dense breast tissue hides the cancer. What followed was 2 years of anxiety as I had a recall on my first anniversary scans, which luckily, were benign .... but being rural, things all take longer to happen. Altho I had my surgery within days of seeing the surgeon (10 days after my diagnosis on Jan 5th was confirmed) it had taken 2 months to get to the diagnosis, with my biopsy being done between Xmas & New Year. The following year, the biopsy was on Xmas Eve .... so 2 x Christmases/New Years - totally stuffed!! For this reason, I brought my scan dates a month early to October - so that if anything needed doing (ie biopsy) I wouldn't be in the Xmas Rush! SO .... I head north today for my annual Mammogram and Ultrasound (luckily, having the resident specialist breast Cancer Radiographer doing both!) I'll take hubby with me & will probably even take him into the clinic room with me (if allowed) to keep an eye on him as he has mod-severe dementia. Otherwise, I'd need to arrange someone to sit with him, if I left him at home. Up til this morning, I hadn't really 'thought' of the scanxiety .... but then it raised it's ugly head again! grrrr. I am not expecting any adverse results - but with this beast, you just never know! I see my Rad Onc next week, also up north - my 2nd last visit to her - next year being Year 5 since detection. Wish me luck!!
Oncology in the bush.
so I have completed the axillary clearence and hopefully will get the drain out tomorrow. The oncology dept just rang and I have my first appointment at Orange base with Dr Lauren Bradbury on the 5/03/19. I will be signed off from the surgeon the previous week. The kilometres are bad. The driving stressful. I will be glad when treatment gets sent to Parkes. I would like to ask what I should expect at this first appointment ?Public or Private (please help!!)
After diagnosis of High Grade DCIS with Mastectomy required. My husband and I are both on the aged pension, and have struggled to maintain private health insurance. I live in a rural area which has no access to reconstruction surgery in the private or public system so I need to go to Melbourne. What worries me a lot is the gap fees if I have to go private because of the need to act fairly quickly. I would love to chat with anyone that can help me with information on how it all works and any idea of the cost process. Thanks
Intro of Pennyrose
Hi, I am a very private person but by way of introduction to this group - I will try to fill you in on where my journey is up to. What a journey ! I had breast cancer in 2009 and had the obligatory lumpectomy, chemo, radiation and 5 years of Hormone blocker drugs - all with their own unique side affects. But I did everything asked of me and eventually went back to work - just 2 days a week but I was quite happy with my semi retirement - then my work gave me three weeks notice (retrenchment) - and at the same time (March 2016) I saw my dermatologist who removed some bits and pieces including a "cyst-looking" thing from the back of my neck. It was a glandular cancer - not a skin cancer - and I waited 13 days to be told the pathology showed it to be Breast cancer. Not a nice way to start my retirement - but since then I have had scans to show the secondary breast cancer is now in the lining of my lungs, lining of my heart, various spots around my chest and one in the vertebra. I began chemo almost straight away and have seen a radiology oncologist but at this stage he does not want to do radiation. Next week I am due for follow up scans and then the oncologist will tell me where to from here. I am 100 klms from the oncology treatment and live alone, though I have a partner - he lives 100 klms away as well. He is always here to take me to treatment and appointments. My kids are not close by but are a great source of comfort to me . Yes I worry, mainly about those I care for. I suppose the uncertainty is the greatest issue. Do I make plans for some time with them? or do I make plans for a funeral? My! I'm getting all self absorbed now and miserable. Perhaps I will leave it here . Hope you are all coping as best you can. - Pennyrose
Makes me see red
I read, today, an intersting article on the ABC website about some of the issues faced by rural and regional people who have breast cancer or are at high risk of developing it. I'm not as remote as the woman who was featured, but even here there are struggles. One of the biggest issues is affordable specialist care. There are few, if any, public services and you do not always get informed about them. You get referred to the company that covers your region even if there are more affordable services within reach. I've spent ten years fighting this fight, and I know what the facts are. ABC interviewed an oncologist who agreed that, yes, there are unique challenges that lead to poor outcomes for county folk. Distance is one thing, cost is another. If you are on a pension or low income and have to fork out specialist fees that are well above the metropolitan rates it makes a shitty situation even worse. It is a pity ABC did not ask that individual what they, and their business, was doing to address equity of access for rural and regional people. I really do wish they had asked that. I wonder what the answer would be? Last time I asked a member of that business that exact question, in a public forum, the response was 'Be careful what you wish for, you wouldn't want to be waiting in clinics like the big public hospitals.' Really. Most of us have either money or time. You should not have to go into debt to fund services that are bulk billed elsewhere. This shit infuriates me.Regional and Rural Information forums - We want your feedback!
The below post was recently added to the private group Living in Regional, Rural and Remote areas . If you are not a member of this group and live rural, regional or remote, please consider joining. (Refer to the Monash Modified Model (MMM) that classifies locations according to geographical remoteness via the link https://www.health.gov.au/resources/publications/modified-monash-model-fact-sheet Hi Members, BCNA will be delivering information forums to regional, rural and remote communities, more details on the locations and dates will be shared soon. Traditionally these have been delivered as full day events from 9.30-3.00. We acknowledge the current cost of living crisis, work and personal commitments might make it challenging for people to attend a whole day event. So we are hoping to get a better understanding on preferred timings from our members. If you could please take the time to complete this short survey to help with the planning of the upcoming forums. https://forms.office.com/Pages/ResponsePage.aspx?id=dgJVk0E5rkyacWRewHkFZW92LAal_5RAn6S9wZSqa_hURU9VU1NLNjlTWTlORFJMTTNHTlVFQlE5Qi4u
Lung nodules
Morning ladies, It has been ages since I have put a post up but I regularly check in to make sure all my pink sisters are doing ok! I am now living in country Victoria after my husband told me the marrage was over (app he found my cancer journey all too confronting!) I had to go to hospital on Monday as I was feeling faint, breathless and my heart was racing. 3 days in High Dependancy and now on a beta blocker to slow my heart rate. On my discharge summary it says they found multiple nodule in both lungs! freaking out !!!! No one said anything to me whilst I was in hospital, I am seeing my onc on Mon. Has anyone else had lung nodules? Will try to keep calm untill I get to see oncologist but am feeling quiet alone at the moment. xCan you add more suggestions re travel & accommodation schemes in Australia
NSW Gov is asking for comments re travel & accomodation schemes - but, really, it relates to ALL states .... If you live in rural/regional/remote areas, make your concerns KNOWN to the powers that be ..... and JOIN OUR PRIVATE GROUP to share/agitate for better reimbursements! https://www.haveyoursay.nsw.gov.au/nsw-regional-health-plan?fbclid=IwAR1pSqCbCrPsargRf6xFxO817kIRjlrwB7Ll6evGRs1AOivg5VC9ZIaaWyU I reckon it is all of the above - as the hoops needed to jump thru for IPTAAS are ridiculous. 3 things that need to change asap - 1) ALL family members on the Medicare card should be able to contribute to the 200k a week travel required to access the payments - not each individual having to travel that amount themselves. 2) The specialist referrals for chronic/terminal conditions should last for the length of the treatment, not needing a new referral every 2 years. Either the patient gets better & the treatment/claims stop - or the patient passes away & the treatment/claims stop. 3) Essential Dental Treatment (eg extractions required before undergoing some forms of chemo) currently need to be done in a hospital to be able to make a claim (which takes up essential hospital beds) when they can be readily done in the Dental Chair .... THIS NEEDS to be changed - as we still need to travel for the service, but are not allowed to claim for it & it is an essential part of the patient's treatment. NOT having it done, can cause death or permanent disfigurement. And that is just the beginning ...... feel free to do the survey, tell them your ideas - hopefully some of them will be carried thru!
New Podcast: Accessing Support for Breast Cancer in Regional and Rural Locations
Hello everyone! We've just released a new podcast about Accessing Support for Breast Cancer in Regional and Rural Locations. To listen, please follow this link, https://www.bcna.org.au/understanding-breast-cancer/resources/podcasts/episode-36-accessing-support-for-breast-cancer-in-regional-and-rural-locations/ The full list of previous podcasts, can be viewed here https://www.bcna.org.au/understanding-breast-cancer/resources/podcasts/.
