Best Of
Re: BYO Cold Cap?
in regards to the byo caps I followed a lady in instagram who did it and it looks like a lot of work, you need to have multiple caps and keep the caps on ice and kept at a certain temperature and changed at certain intervals, this lady had to take her mum to every session to help with it all, it did work but it looked expensive and tricky.
Radiotherapy - breast pain at night
Drain pain
I am two weeks post left nipple saving mastectomy on left with implant reconstruction. Pathology after surgery found cancer in lymph nodes so I had a lymph clearance one week ago.
I have found the recovery from the lymph surgery so much more painful and my drain site seems to be where the pain is coming from. The tube continually looks blocked with clots. The breast care nurse tried “milking” the drain today but it was so painful.
BYO Cold Cap?
I have just found out that my hospital (Monash) doesn’t offer the cold cap for chemo. The breast care nurse I spoke to was very disparaging of them, saying there was no evidence they worked, which surprises me as they seem relatively common in better hospitals.
Re: Confused & Overwhelmed
Re: Nervous and new
Re: Is everyone sleeping or just not posting?
I have found using an app like Calm is useful. I use the sleep stories and meditations, especially the breathing ones. I have also found colouring to be quite soothing to my busy mind, both physical colouring books and digital apps. I also binge audiobooks and streaming as a last resort to just tire myself out so I can sleep. Not always the best but it works for me.
Re: Nervous and new
Your story touched and resonated with me as I'm newly diagnosed and just recovering from surgery. I was surprised how well mine went to be honest and I was very scared going in.
Others have given you great advice and pointers to resources. I found the tips on the BCNA site useful in helping me prepare before and thinking about after at home. I'm now making use of the gentle exercise videos too. Wishing you all the best for your upcoming surgery.
New here...my story so far
Hello,
I’m new the group and haven’t shared my story yet. It’s taken me a little while to be able to read some of your stories and not have ‘freak out’ moments. Thank you to all of you for sharing your stories. It is important to see the full gamut of what is happening and what is to come. In my initial moments I was overwhelmed reading here because I was so scared every time I read and got caught up in thinking if it would happen to me too. So I selfishly took myself away from reading and gave myself time.
I was diagnosed with EBC (early breast cancer) in August after a Breastscreen appointment that picked it up. I have a fibroademona that was detected and checked when I was in my 20-30s so I fully expected that would come up in scans. In fact, I had noted a lump in my breast and had managed to convince myself that it was just the fibroadenoma that had grown.
It’s amazing how we can easily convince ourselves isn’t it? Not quite delusion, not quite outright denial but I did have a few things going on at the time. I lost my job of over 20 years, Covid shut down the world and just when I was finding balance and working again I fell down some stairs and broke my leg. So for two years, I let other things take priority over having my Breastscreen checkup. I’m one of those cautionary tales and I’ve had to give myself grace and not blame myself too much over it and think on the ‘what ifs’. If I keep on the ‘what if’ I will just go crazy and overwhelmed emotionally and I have to get on with it. Decisions have to be made and now knowing what I know, I can’t wait any longer.
Here is where I tell you all that this isn’t my first time with cancer. In 2010 I had surgery and radiation for a liposarcoma in my arm. I was finally cleared and cancer free by 2018/9. So I’ve had a few years of not thinking about it except when I see my scars. To say that I am scared is a huge understatement but I’m a planner and practical person mostly so I cope by finding solutions. I don’t know what the stats are on survival rates for my situation, it’s one of the questions I haven’t asked yet. Partly because I’ve gone into solution mode and partly because I am just that bit too scared I guess.
My EBC journey so far has been all about finding a surgeon which I was lucky enough to be able to do from my specialist physiotherapist. I’d been seeing that physiotherapist for my arm and knew she also worked with many women with breast cancer. She referred me to my cancer surgeon. The decision to have surgery was an easy one after the sarcoma I knew it was necessary. Having the choice of breast saving surgery and reconstruction is a blessing. I chose to have my other breast symmetrised at the same time. To my thinking, if I was going for surgery I preferred to do it all at the same time.
My surgery was 8 October so I am now 2 weeks post surgery this week and healing amazingly well. I’m grateful that my body heals so well. I am also grateful that I was able to read up on tips on the BCNA site. I chose to go private so that I could choose my surgeons, both of whom are excellent in their fields and have been wonderful.
So what are my numbers? My EBC lump was 37mm Grade 3 invasive carcinoma, ER and PR 75% 3+ positive, HER2 negative with clear surgery margins. However, 2 of 3 lymph nodes showed metastasis with largest tumor deposit 22mm. That is the current concern and so I’m due to have a PET body scan this week and consultation with a radiologist and oncologist.
My surgeon tells me that she wanted more information before deciding my radiation protocol and further treatment. I know I will also have hormone suppression treatment but am not there yet. I am thankful that the research on breast cancers is so extensive that treatment protocols are updated often. My surgeon tells me that previous protocol for lymph node involvement would have meant instant removal of all lymph nodes. Whilst I am grateful I may not lose all of my lymph nodes and that I may have options, a part of me is also really sad and scared knowing that the reason there is so much improvement in treatment is because there are so many women that have had to go through this before me.
That’s me, my story so far. I was brief though wordy. I will continue to read and share where I can, you may have noticed that I struggle with sleeping 😊 Sad to be here, grateful to have your support.