Member: KatieT | BCNA Online Network

User Widgets

Contributions

Re: Continue the Plan C discussion in the metastatic group
Can someone please help me join the Living with Metastatic Cancer group? I have tried clicking the join button in a few different ways but it doesn't load properly for me.
7 years ago Place Living with metastatic breast cancer
Views
0likes
Comments
Chemo Brain
I'm three years post-treatment and having some issues with cognitive function. I remember during chemotherapy that I lost track of time and space a bit. I'd wake up not being awake of where or when I was and needing to orient myself often. These days I'm a bit better at it, but planning is hard, timetabling is hard, tracking things is hard and I cannot remember details or guarantee I'll be at an appointment no matter how good my intentions are. I was never like this before BC. I have been trying to use my phone to prompt me and having problems with not hearing it if the sound is too low or not having the phone close enough to me. I'm wondering whether an Apple watch might be a good thing for me. I don't know if they vibrate on reminders or not but maybe that could work. I'm at a point where I'm wondering if I'm fit for work any more.
8 years ago Place General
chemotherapy
side-effects
Views
0likes
Comments
Re: Eyebrows
I haven't had any eyebrows for three years now. I suspect I never will have thanks to chemo. I am not a person who likes to fuss too much drawing things in, but a quick couple of lines with an eyebrow pencil is really easy if you get the right ones. The best one I've had is Hourglass. It's expensive but it wins hands-down. I've had a few of those, but when I was feeling a bit poor I went onto ebay and found some cheapies that were similar. I go and buy half a dozen at a time and keep one in every handbag and bathroom drawer just about. The ones I have at the moment are called 'Drawing Eye Brow' and have a blunt angled drawing tip on one end and a brush on the other. I will tattoo mine one day when I find a good place around Brisbane somewhere. I don't want to just go anywhere.
8 years ago Place General
Views
0likes
Comments
Re: Permanent Hair Loss?
I think I might have found a good thing so I'm going to post about it here in case anybody with a similar story reads it. Over the last couple of years I've grown back some whispy but horrible hair. It seems that it is finally enough to be able to hold a topper. I have had lots of full wigs, mainly acrylic. They are a good temporary solution to hair loss but they don't suit me as a permanent solution. I went hunting for toppers. It's hard to know what to buy online because you need to colour match etc so I wanted to visit someone to look at my hair and tell me what to do. It's hard to find places. Around Brisbane I have only found one that custom makes toppers and that doesn't glue them onto your head. I want to be able to take it off or put it on and still have my hair underneath. Some that get glued on need some hair shaved for good contact and I didn't want to do that. I looked around online and found a placed in Brisbane (Ashgrove) called Tango Hair Loss Clinic. There are two ladies there who are hairdressers and all they do is make customised toppers for people with tricky hair loss problems whether it's alopecia or problems like mine. They made a plastic profile of my head and we worked out where the hair is missing and where it needed to go. We picked the colours of hair to go in the piece to match my own hair and blend in and the order was done up to be sent overseas. It takes 3 months to be made. Then I will go back in to have a hair trim once it's clipped on so it can be perfectly blended together. I tried on a sample and it feels really good. It's so much better than a wig. Not tight or itchy. Being human hair it's soft and feels lovely. It probably feels similar to having just a hair clip in your hair. The topper can be cut to duplicate my own original hair if I bring in old photos. The downside is that it's expensive. $2,600 for this one but I get $1,000 back from my health insurance if I get a letter from my oncologist to say that it is a prosthetic required as a consequence of cancer treatment. So it will cost me $1,600. I think it's worth it considering what I've been through. I expect it to be game-changer for me. I can't wait to get it. :)
8 years ago Place Side effects
Views
0likes
Comments
Re: Advice to Medical Students - your thoughts
Be an expert - a thorough expert - on any drugs that you are giving to your patients. Don't guess. Know what you are talking about and tell the patients the real risks. Don't gloss over important things. For example, don't tell the patient her hair will grow back when it might not. Never minimise the impact of hair loss.
8 years ago Place General discussions
Views
4likes
Comments
Re: Chemo Brain. I've succumbed.
*Sigh* I'm hearing you. I am trying to keep myself together well enough to keep my job. There's a fogginess about my thinking and it is a constant effort to keep focused on anything. Timetabling myself is hard. Remembering appointments is impossible. Multi-tasking is a thing of the past. I hardly know myself. I was considering doing a PhD before I got breast cancer and now I am so glad I didn't start it. I would never have completed it. These days I wake up wondering what day it is and where I am. I'm disoriented a lot of the time. It's good that you had the option of deferring. I hope some time and rest allows your body and mind to recover somewhat. You can always come back to it if you feel motivated, or you can leave it and move on to other things in your life if you no longer feel motivated. So much changes in our lives that we don't always have the same goals.
8 years ago Place General
Views
2likes
Comments
Re: Help us promote Australia’s first Male Breast Cancer Awareness Day
I am very pleased to hear of this move. Throughout my treatment I thought often of the difficulties that must be faced by men in the same situation.
8 years ago Place News and events
Views
2likes
Comments
Re: Permanent Hair Loss?
Thank you for the advice. I have a laser helmet which I've used for a year. If it helped someone else a bit I will try it for longer. I have gone through every published research paper that I can find on this condition and it seems to me that the problem has been documented for a decade, yet nobody told so many women given Docetaxel that they might permanently lose their hair. Cancer didn't do this to me, the chosen treatment did. I did not know enough about the medications to make a better choice. I relied on the advice of my oncologist and that was a mistake. The trouble is that I was not in a condition to do any more than that at the time. Having Docetaxel was a big mistake and in the same situation, knowing what I know now, I would insist on a different medication. If I was told of this outcome I would have had to think hard about what to do, but the issue is I was told my hair would grow back. That was wrong. If there were two possible treatments and one was going to ruin my hair away permanently, then I would have picked the other. All the published research is saying that there is no treatment. The Minoxodil or other treatments that increase the blood circulation to the scalp can only improve the hairs that are already coming back, it cannot regrow the hairs where the follicle has been destroyed by the chemotherapy. Different women are left with different amounts of salvageable hair. I will keep trying to maximise what I've been left with but it makes me cross sometimes and just really sad the rest of the time.
8 years ago Place Side effects
View
0likes
Comments
Re: Finding a Bra that fits one breast
When I first started wearing a bra again after surgery I wore a really light singlet underneath it and it stopped some of the irritation over the scar. Another tip if you end up with a sore scar is to try the silicon gel dressings. I developed a keyloid and it was sore for a long time but the silicon gel dressings were really helpful at reducing the proud flesh and also making it feel protected and secure.
8 years ago Place Side effects
Views
0likes
Comments
Re: Permanent Hair Loss?
I haven't heard from her. I went to one - I forget the name and it was somewhere in the region of $5,000 for a year of treatment with no guarantees. I was hoping they'd seen other people like me and could offer me some hope. I wonder what Ashley and Martin did for that lady. I have used Minoxidil and it might have gained me a little. I also have just read a study that was done on men that concluded that microneedling in conjunction with minoxidil might work better so I'm going to give that a go. If I knew there was a real benefit to be gained, I'd spend a lot more than $5,000 to have a normal head of hair again. I didn't want to go into debt if it was going to be useless. I would like to get microblading of my eyebrows done. That would be good. I might suggest to my family that they don't buy me any Christmas pressies and all chip in a few dollars. Last time I checked it was about $500 to get eyebrows. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3746236/
8 years ago Place Side effects
Views
0likes
Comments

Groups

Work and breast cancer
PUBLIC GROUP - This is a space to connect around the challenges and questions that come with managing work and breast cancer. Whether you're navigating time off, returning to work, dealing with workplace conversations, or exploring your rights and options, you're welcome here. This group is open to the public (not just members of our online network) to help broaden access to important information, practical advice, and peer support.
1 month ago17 Posts
Living with metastatic breast cancer
This is group for people living with metastatic breast cancer (also called stage 4, secondary or advanced breast cancer). This is a safe, understanding space to connect with others who truly get what it’s like to hear the words that you are living with metastatic breast cancer. Together, we offer each other strength, compassion, hope encouragement and a place to talk openly—whatever you're facing.
Choosing breast reconstruction
PRIVATE GROUP. Choosing breast reconstruction after single or double mastectomy can feel overwhelming, and deeply personal. This group is here to connect you through others' stories and images. Please respect everyone’s privacy—do not copy or share content outside this space. Information is based on personal experience and is not medical advice; always consult your healthcare team for guidance. ⚠️CONTENT WARNING⚠️ Members may share photos of breast surgeries. These images or discussions may be distressing or triggering for some. If you need support, please contact the BCNA Helpline - we are here for you.

User Profile

KatieT

User Widgets

Work and breast cancer

Living with metastatic breast cancer

Choosing breast reconstruction