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Re: Cold capping
Definitely you are aiming for maximum scalp to cap contact. You will be given a spray bottle to wet your hair down beforehand. I have very long hair at the front which I normally wear flicked back, no part. But when it was wet I just let it hang off to the sides to maximise scalp contact. The cap felt really tight around the front and sides and actually bulged a bit at the top of my head - which I guess is why I lost more hair at the top and back. So whatever works for you to maximise scalp and cap contact. 👍🏻10Views0likes0CommentsRe: Oncotype
I’ll come with you to stand in front of the Health Minister @kmakm! Must read the submissions made by the BCNA & others first though. Part of the problem is that we don’t have access to the data on the costs of chemo and additional treatments etc. But presumably this data exists.11Views0likes0CommentsRe: Oncotype
I know I’m a bit late to this discussion but I absolutely agree on the importance of getting better access to this test. I paid for my own ($5K) and feel for those women who cannot afford this (also on top of many other out-of-pocket) costs. But just as an example, of “cost-benefit”, after my 1st TC chemo round when I ended up in hospital for 5 days with febrile neutropenia, I was prescribed Neulasta injections for subsequent rounds. These are covered under the PBS, so I paid $45 dollars per shot, but the actual cost that the govt pays is $15K per injection. So that is $45K that the govt PBS paid to support my treatment. Now I know not everyone gets Neulasta, but imagine if I didn’t really “need” chemo (my score was 38 - so I did!!), couldn’t afford the cost of the Oncotype test and went ahead with chemo anyway. A potential huge waste of govt (taxpayers) money. Not to mention all the other direct and “indirect” costs.12Views3likes0CommentsRe: The Secret Suckiness Of Life After Breast Cancer
Silba said: “... I had a wonderful moment yesterday , my eldest son had his University graduation , I cried, not only because I was proud but because I was alive to see it happen, his professor was sitting next to me , thought I was a total nutcase, pity I couldn't tell him that I have Mets...” Hey Silba, I also had the joy/tears of seeing my eldest graduate last month. When I was first diagnosed he was 3 and his younger brother was 12 months old. I remember doing a “deal with God/the universe” and begging to be able to live long enough to see them go through school & grow to be adults. I promised the universe I would “be good”. Not sure I’ve kept up my end of the bargain 🤪 but seeing him reach this milestone (& wearing my chemo wig for its first public outing) was huge. Completely understand the tears. I hope you can get to see many more milestones for your family. Hugs.9Views0likes0CommentsRe: Cold capping
Hi Yango, definitely worth giving it a go. I’ve just finished (2weeks ago) round 4 of TC & used the cold cap. It has worked pretty well. I do have some bald patches on the top and back of my head but around the front and sides I still have a fair bit of hair. It’s meant I could just wear caps and beanies out and about and with my longer hair poking at the back and around the front no one knows I’m “sick”. I go back to work next week, and will wear a wig, as without it my hair looks a bit like a “white walker” (GOT reference!🤓). But the other thing I’m noticing is that I already have some stubble growing through on the bald patches, so I think that is pretty fast and no doubt has been helped by the cold cap. Best wishes for your treatment.7Views1like0CommentsRe: Early stage breast cancer #4 (recurrence #3)
Hi everyone who has provided such great info, kind thoughts & wishes. I have had the results of the Oncotype test today. 38. High. Chemo is a good option. I am good with that. Start next week. Feeling strangely positive knowing that despite the high risk of recurrence, chemo will help.42Views1like0CommentsRe: Name of tests please
Hi LibbyA. I’m getting results from the OncotypeDX test next week. Your Oncologist will be able to advise the best option for your case. Unfortunately there appears to be no Medicare or Health Fund Rebate. I’ve just paid AUD $5K. A lot in out of pocket, but I felt worth it. It’s frustrating though that this cost means many women can’t afford. I think some other brands of test are cheaper. Take care.15Views0likes0Comments- 16Views0likes0Comments
Re: Single and still dealing with the complications of breast reconstruction and radiation
Hey @Gemski so sorry to hear all you have been going through. Radiation definitely does cause issues with skin healing, whether you are dealing with reconstructions or post radiation mastectomy with no reconstruction or further surgery for local recurrences. I wonder if you have thought of no reconstruction - “going flat” as they now call it. I’ve been flat for 15 years and have worn a prosthesis. I have been happy with that. I’ve also recently had a recurrence in the scar tissue of the mastectomy and was offered lattismus dorsi reconstruction as well as diep. I was very clear though that I wanted to stay flat and had a thigh flap transplant. I had a week in hospital & 3 weeks home. Back at work etc after that. I appreciate that you may prefer to still have a reconstruction. But might be something to consider as an alternative. Sending soft hugs12Views1like0Comments
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Let's talk: vaginas, menopause & me
PRIVATE GROUP. This group is a safe, supportive space to talk about sexual health and emotional wellbeing during and after breast cancer. We discuss topics like menopause, vaginal dryness, pain during sex, UTIs, and changes in libido, and share ideas and products that may help. Whether you're navigating intimacy with a partner or reconnecting with yourself, you're not alone here. This is a place for open, respectful conversations and shared understanding.
