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Mazbeth
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Joined 6 years ago
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Re: Searching for advice
@brookemaree The waiting for results is tough, but try not to get ahead of yourself. I know that is so easy to say, but I have learnt that our bodies are complex and there are multiple possibilities. It is really good that your doctors are doing a thorough investigation. It is important that you have the biopsy - knowledge is power. You are in good hands. Keep away from google as this may cause you unnecessary worry. Try to keep yourself busy. Sending you best wishes.21Views1like0CommentsRe: The “journey” begins.
@MrsMorrisey definitely let it all out because as I read somewhere, ‘that shit gets heavy’. I understand how frustrating it is when people offer advice when, as you know, they are not walking this path. No one should comment on your treatment choices outside your health team (and maybe those closest to you) who do actually know what they are doing. It is very insensitive of someone to comment on the medication that you may need to take to put you on the path to a great life. I did chemo and was incredibly grateful it was available and that new treatment options continue to be offered. Try not to listen to the people who are giving you unhelpful advice. I know many of us here could fill a book of comments/actions of others that were completely unhelpful. Your team may mention an oncotype test if they are not sure about chemo. I was diagnosed 4 years ago and was not offered it, but I think I probably would be offered it if they knew what they know back then. I don’t know all of the details, but it may be worth asking about given you have clear nodes etc. and they are mentioning ‘grey area’.5Views0likes0CommentsRe: Anxiety and Depression with cancer
Hi @riss81, I ended up seeing a psychologist when I was diagnosed 4 years ago as I was so overwhelmed. I found it really helped me. If you have a breast care nurse, please ask them if they can recommend some options for you. I found that whilst chemo is a physical challenge, the mental challenge is enormous. My nurses also explained that chemo messes with hormones which may explain the change in your moods. Please let your health team know how you are feeling, don’t try to tough it out as your emotional wellbeing is as important as your physical health. I also called the Cancer Council as they also offer a free service. This was also very helpful. Take care 🌸5Views2likes0CommentsRe: Newly Diagnosed Locally Advanced Breast Cancer
Hi @kirstiekoala, Firstly, I am very sorry you are going through this, it is a tough time. It is completely understandable that you are feeling numb. Many of us here can relate to that feeling. This group is incredible and the collective knowledge and support is amazing. I was diagnosed exactly 4 years ago. I had neoadjuvant chemo and both my surgeon and oncologist said that it made no huge difference whether I had chemo before surgery or after. However, given it was Xmas they said we could start chemo immediately. They also said that having chemo first would mop up any rogue cells and it would mean I wasn’t delaying chemo while I recovered from surgery (and if I had an infection post surgery, chemo would be delayed). They may be suggesting neoadjuvant chemo to shrink the tumour for breast conserving surgery or a lumpectomy. This is something to really discuss with your doctor. I knew from the start I wanted a double mastectomy (DMX) as I had very dense breasts and had many benign cysts over the years - I was 53. Even though I had made my decision, having chemo first really gave me time to work through what I wanted post treatment in terms of reconstruction. I was able to think about what plastic surgeon I wanted etc. Whether or not to have reconstructive surgery is a very individual choice and there are some excellent resources that can help you with your decision. I had a DMX with immediate reconstruction with implants. I found the delay in surgery was tricky to navigate as I wanted to ‘know’ the pathology of my BC which, until it is removed, you do not know the exact details. My BC was invasive lobular cancer (ILC) and it is tricky to image and is known to be ‘sneaky’. I did my treatment and 6 months later I had the surgery. The benefit was that the pathology actually shows your cancer’s response to chemo - kind of like a report card - which can help inform doctors whether there is a need for further treatment. There are some excellent videos on the BCNA site which I think you may find helpful. I also did genetic testing which was clear. I had family members who had been diagnosed when they were older so the doctors did not think there was a genetic link, but as I have daughters, I wanted to know. This is also an area that is evolving and there are quite a few genes they test in connection with BC. This is the most challenging time and as you know, the waiting is hard. It is great that your husband is advocating with you and for you. Gather your team and take it one day at a time. You will get through this.4Views0likes0CommentsRe: First treatment
Hi @riss81, I would recommend letting your health care team know as soon as you can as they generally will be able to help you. I found that I was pretty knocked around for the first 3 days and then I came good. I was able to establish my routine - the bad days where I lay on the couch and then the good days where I would go out etc. Please make sure you keep taking the nausea medication as you do not want it to start because once it starts, it is hard to get control over it. My nurses told me not to give it any opportunity to get a grip and to take the medication if I had even the slightest feeling of nausea. Try to keep up your fluids - ginger ale, water with a squeeze of lemon. Suck on some fruit tingles - anything that you feel like eating, have it. Take care of yourself.2Views3likes0CommentsRe: Scalp cooling - should I stop, done 11 chemos and 5 to go
Hi @FleurDK I did not have success with the cold cap, however, for what it’s worth, I think as long as you are happy to keep going and it isn’t causing you ‘pain’, you should keep going as you have done 11 treatments. Yes you have lost about 50%, but you may not lose much more. When you finish the next 5, you will have patches, but you will also have hair to style around the patches and you will have a head start on the regrowth. You can wear hats and hair bands and I think if you had your remaining hair cut a bit shorter, you will be able to blend the old and new hair. I know it takes the nurses a bit of time, but this is also about supporting you. My hair grew back on taxol. I think you reassess each week. I think you will be surprised that when you finish, you will have some hair and a hairdresser will be able to work some magic and blend it. I grabbed some tinted mousse and rubbed it through my ‘new’ hair and I also bought a volumiser product as well. All the best, you are almost there 🌸33Views2likes0CommentsRe: Sentinel node biopsy
Hi @Pommy8 and I am sorry you are going through this and find yourself here. You will be able to find a lot of really helpful information here. When I joined here, I knew very little, but everyone here was so generous with their knowledge and support. I cannot offer too much because I did have chemo as I had a large tumour, clear nodes and hormone positive. The waiting for results is so hard. It has been 2.5 years since my diagnosis but the use of the ‘oncotype’ test is now recognised in Australia as a very good tool to use when making decisions about chemo and other treatment pathways. However, unless things have changed, you will pay approximately $4000 for a sample of tumour to be tested in the USA. It is a lot of money for sure, but it is particularly helpful for women who have early stage BC and who are trying to make a decision regarding chemo. In the USA oncotype testing is a standard protocol, and whilst it is recognised here as a valuable tool, it is a ‘user pays’ situation. This may be something to talk about with your oncologist. However, your treatment will be decided based on many things that are unique to you - age, grade of tumour etc. Keep asking questions both here and of your treating team so that you feel more comfortable with your decisions.8Views0likes0CommentsRe: Feeling sorry and horrible
@Siewli many of us can relate to how you are feeling and I agree with the tips that have been shared. I saw a psychologist at the start of my treatment as I just could not get my head straight - it is such a mind game as well as a physical challenge. I found that being able to speak openly with someone who did not have the emotional connection to me invaluable. I know the mental health system is stretched at the moment, and it may be difficult to get an appointment, but the cancer council also offers free services - I used them too and they were also excellent. Your family members can also use this service. I also set up a calendar and I used a big red pen to mark off each treatment - simple, but it really helped me to see the progress. Try to only focus on one round at a time, don’t get ahead of yourself. You are going to find your own routine as you will start to know what your good days are and which days you may need to just lie on the couch. On your better days, try to do something nice, something that makes you happy - sitting outside, going for a drive, anything at all. If you can, try to go for a walk - even on the days when you don’t feel like it - just a really gentle stroll. Definitely keep your treating team informed of your symptoms as they will be doing their best to keep you as comfortable as possible. You are going to get through this - in fact, you are going to be amazed at just how strong you are. You are brave - never doubt that. You are also stronger than you believe. You can do this.4Views1like0CommentsRe: Devastated
Thinking of you @Siewli - it is overwhelming in the initial stages. Never apologise as you are not whinging. Come on here anytime - we all get it and there is so much good advice. You will do this. @Afraser told me when I first posted here that I would get through it, well, 2 and a half years later, I now know she was right! Ask any questions, nothing is off limits.11Views2likes0CommentsRe: Newly Diagnosed and Anxious
Hi @Molly71 this network is amazing and helped me so much. I am 2.5 years post my diagnosis in 2019. I found that watching the videos on the BCNA site really helpful. There is one that is along the lines of ‘so you have been recently diagnosed’ and it was excellent. In the meantime, steer clear of google. I did go to a Look Good Feel Better program, which I honestly didn’t want to go to. However, I met 4 other girls and we are the best of friends who catch up whenever we can - the workshop was great, but I never realised I was going to meet 4 incredible women who I can message any time and know they are on the other end. @TonyaM has offered some great points - try to to focus on what you know to be true, the facts and not the what ifs. In this moment, the tumour has been removed, but they just need a little bit more for safety. 4 of the 5 nodes were involved and again, they will take more for safety. It is a lot to process and it is totally ok to feel overwhelmed, but try to be in this moment. Take care Mx15Views1like0Comments
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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.Invasive Lobular Cancer (ILC)
This group is for anyone diagnosed with invasive lobular breast cancer (ILC), which begins in the milk-producing lobules and accounts for around 10% of invasive breast cancers (US statistics). Connect with others, share experiences, and access peer support from people who understand the unique aspects of an ILC diagnosis.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.
