Predict - Breast Cancer app
I’ve just discovered an app called ‘Predict - Breast Cancer’. I may be late to the party on this one and you might all know about it but I’d like to know your opinions if you’ve used it and if you’ve discussed it with your oncologists. It strongly recommends that patients use this tool in consultation with their doctor. The app’s blurb says: “This tool applies to women who have had surgery for early invasive breast cancer and are deciding which other treatments to have.” ”Predict is a tool that helps show how breast cancer treatments after surgery might improve survival rates. Once details about the patient and their cancer have been entered, the tool will show how different treatments would be expected to improve survival rates up to 15 years after diagnosis. This is based on data from similar women in the past. It is important to note that these treatments have side effects which should also be considered when deciding on a treatment.” It claims: ”Development of the model was a collaborative project between the Cambridge Breast Unit, University of Cambridge Department of Oncology and the UK's Eastern Cancer Information and Registration Centre (ECRIC) (now part of the National Cancer Registration and Analysis Service) and was supported by an unrestricted educational grant from Pfizer Limited (the company had no input into the model at all). The website has been built by the Winton Centre for Risk & Evidence Communication at the University of Cambridge who are funded by a generous donation from the David and Claudia Harding Foundation and the Winton Charitable Foundation. Predict has been endorsed by the American Joint Committee on Cancer.” This is a link to the app: https://breast.v3.predict.cam/tool
What to expect - AC after Carbo/paclitaxel/pembro
Hi fighters, I am super worried about what to expect with my first AC coming up. I'll be having my birthday gathering 3 days after it too. I've got one more paclitaxel on its own in the 12 week carboplatin , paclitaxel, pembrolizumab regimen. For triple negative. I'm mid 40s. Apart from a few short bouts of intense side effects, i feel I've been fairly fortunate. No nausea. Good appetite. Side effects: Pins and needles - then used cold gloves and socks so only mild tingles after that mostly. Headaches and some fatigue occasionally in first weeks. Constipation after carbo - dealt with easily. Hints of UTI but also dealt with swiftly and all ok. Whole body red rash week 9 followed by itchy hands and feet (skin was fine) keeping me up all night for 3 nights before getting better. Fast testing heart rate in middle weeks - very out of breath and rate skyrocketing with a little activity. I attribute my last weeks being very easy due to skipping 2 weeks due to low neutrophils and getting those booster injections nearly 2 weeks straight. Also paclitaxel dose reduce due to that horrible itch. Do we think AC won't likely be so kind to me? Am I stupid for wanting to get together with friends in my birthday? Of course no sick people allowed! I have remained social and continued to work (at schools!) so far. Please share your experiences with AC, particularly if you feel similarities with mine so far. Many thanks in advance ❤️
Abemaciclib
Morning ladies, I've been on abemaciclib for 14 months & it's been prescribed for 2 years alongside Letrozole which is for 10 years. Tbh it's been great considering how bad it can be so I feel humbled and I only had gastro issues when I first started. However, this week for the last 4 days I'm having to take gastro stop ++, I have nausea, fatigue has hit me really hard, lack of appetite & generally feeling rubbish. Has anyone else experienced this or know of anyone? I have my monthly oncologist telehealth next week so I'll definitely be discussing it.
Hormone therapy and sex
Hello, it’s a bit uncomfortable to talk about but I can’t really find good tips. I’m only 29 and on hormone therapy. I have zero libido which I can even live with the problem is I have extreme pain during sex, I’m extremely tight, I start bleeding, it feels horrible that I started crying multiple times. I’m now extremely terrified of being intimate which makes it even worse. Every time I date someone and it’s about to get intimate I end things because im so scared. I tried lube etc. I can’t date anymore because at some point being intimate is part of it. And I’m too young to be single forever. I don’t know what to do it’s getting worse and worse. And I’m uncomfortable talking to someone I’m just dating about this, and obvisouly no man who is t invested in you yet will want to continue dating if you say you don’t want to be intimate. Does any of you have tips?
Docetaxel Side Effects FEC-D Long term side effects or menopause?
Hi all, its been several years since I posted on here. I'm hopeful someone can help. My apologies for my long post. I promise Im not a hypochondriac. I'm coming up to 7 years cancer free and should be living that life changing, "Im so greatful to be alive" kind of life. But I feel like cancer has added 20 years to my health. Anything that ailed me before treatment has amplified. My knees and ankles constantly ache. Its very hard to stand up from a seated position. I have neuropathy symptoms from the knees down. I randomly run out of breath. My hair feels noticeably thinner (it grew back white). My scalp constantly itches (no dandruff, just red) and I keep getting small lumps on my crown and the nape of my neck. I'm also getting re- occurring cysts in my arm pits, some have showed up in my breast during mammograms, but they come then go. Ive had chemo induced menopause for 6 years now. So much brain fog and vertigo. I now have osteoarthritis and to top it off, during my post chemo scans they found a lump in my skull towards the base of my neck which was deemed to intrusive to do a biopsy. At one stage I was told I would need yearly scans. I feel like its been put in the too hard basket. Ive been trying to get doctors to listen to my concerns for 2 years now. Ive also been trying to get a specialist to see me since June last year. I cant even get on their waiting lists. The team that looked after me during my cancer journey were absolutely marvellous. Now that Ive been 'signed off' help and understanding have been lacking. I'm on long waiting lists to have things looked at, living with the fear of re-occurrance is always at the back of my mind. Im going around circles with my GP but Im now too emotionally exhausted to make a change. I lived with anxiety and depression before cancer but now I feel it is overwhelming me. Ive tried counselling several times but I havent found them helpful. Dealing with this and lifes 'normal' challenges has really changed me. I have searched the internet for sites that deal with life after cancer. Trying to find out what side effects are common or potentially long lasting. How to treat them or how to deal with them. Are my symptons a result of treatment or is it a menopause thing? All the sites i find talk about treatment and short term side effects. Im hoping theres a site out there that might inspire me and give me back the drive to look after myself. Even a site for menopause after triple negative breast cancer would be very helpful(preferably an Australian site). Ive been told to avoid any hormonal treatment. Are there other options? If there is anyone living a similar outcome to me, what are you doing to help your self? How are you treating menopause after TNBC? Whats working for you? Thank you if you took the time to read my post, I know its a long one but i really appreciate it.
Struggling with Tamoxifen side effects
Hi All , My name is Christine, I have been on Tamoxifen now for 2 years and have always struggled with the side effects of Tamoxifen...I get them all! I have had 1 breast removed after being diagnosed for a second time with breast cancer 2 years ago.The first time 10 years ago I underwent radiotherapy ... I'm 48 yrs old. I am struggling with: Hot flushes Aching legs Struggle to keep weight off no matter how much exercise i do moodiness loss of libido fuzzy headaches generally changed me to feeling crap daily Interrupted sleeping patterns Constantly going to toilet I have spoken to my doctor who suggested anti-depressants which helps with the hot flushes but i am reluctant to take them due to other side effects. I have suggested stopping Tamoxifen to my doctor who advised it would reduce my life span by 2-3%. I have a friend in a similar position as mine and she stopped them with no issues to date (8 years) and is urging me to stop. Does anyone suggest alternatives or make comment if stopping Tamoxifen is irresponsible? Any help or suggestions are much appreciated. It is really affecting my life, my personality, my thinking and made me a completey different person .. I was once strong physically, mentally and spiritually ......its also affecting my husband..anything he can take?..lol Christine xxHER2+ ER+ - huge side effects
Hi I was diagnosed with HER2 positive and estrogen positive breast cancer in October 24 Am having chemo / Herceptin - perjeta weekly until 20/1 then prob surgery end of February. As I’m older 73 am so worried about survival rates and if the treatment will work I’ve had no ultrasound or anything to see if the tumour has reduced and I have a satellite cell next yo my tumour - multi 3 breast cancer it’s been terrifying to say the least and still in shock and have had huge side effects - numbness - chemo rash and sores all over my body / hair loss despite having the gold hat and diarrhoea
brain fog post chemo treatment
Hi All Just a question about brain fog and how long people experience this after chemo treatment has stopped. I finished chemo about 5 weeks ago and am in my last week of radiation. I expected to have a clearer mind by now. Just wondering about other people's experience with brain fog post treatment. thxs fiona
Are you experiencing pain following treatment?
Register for the Persistent pain, addressing quality of life webcast on Wednesday 7 February, 7pm - 8.15pm AEDT. Register now (and if you miss it, we will email you the recording) This webcast will address types of persistent pain associated with early breast cancer treatments, strategies to manage pain and further resources and support that may be available to you. We will be joined by three experts on the night, Professor Paul Glare, Pain Medicine Specialist, Dr Charlotte Tottman, Clinical Psychologist and Naveena Nekkalapudi, BCNA Consumer Representative. Naveena will be sharing her experiences of persistent body pain and why quality of life is paramount to her. You will have the opportunity to put forward your questions when you register or during the event. For more information about the webcast and speakers, and to register, please visit https://www.bcna.org.au/event-directory/webcasts/persistent-pain-after-breast-cancer/ Please feel free to pop any questions below in the comments or get in touch with the events team via [email protected]. We look forward to seeing you there!Do I take Letrozole
Hi there. I am new to this group. I have had a Grade 2 cancer removed (lymph clear) and 3 weeks of radiotherapy. The tumour was 9mm Oe+ 100% Pr+ 90% and I now have been recommended to go on Letrozole. It is sitting on the bench and I am really nervous about it. I'm post menopausal and the bone density scans are showing osteopenia already. I'm really worried about all the side effects - weight gain, osteoporosis, joint pains etc.... Has anyone else been in the same boat or do you feel that because it is recommended by the oncologist, they are the ones that know best??? I believe he said it only increases the chances of not returning by about an extra 2% (i think from memory).... so is it really worth it? Happy to hear people's thoughts pls
