New diagnosis triple negative BC
Hi all, I'm having a bit of difficulty reaching out to talk to anyone going through a similar experience - I'm 27 and just diagnosed with triple BC. I've joined the young persons group and awaiting to join triple negative group. I'm in the limbo period of waiting to be referred to oncologist and awaiting appt with the surgeon, so I really don't know anything yet. I suppose I'm just wanting reassurance and support from someone that has go e through a similar experience or maybe if anyone has any recommendations for other places I can go to for support, I've contacted a breast cancer nurse, but I haven't heard back yet. Thank you! Oops posted twice!
Cancerversary 🍀
Hello lovely ladies. Today, on April Fools, I celebrate one year since my double mastectomy. Mixed feelings, for sure. It hasn’t been easy, that goes without say, especially with the whole surgeon saga happening. I’ve found out he left tissue behind in both breasts, in areas that were shown suspicious on the pre-surgery MRI. And he didn’t highlight those areas for pathology to check, so not sure what there even was there. He also refused to test further post surgery. Luckily my beautiful current surgeon is on top of it. However, I am still grateful that I had the surgery, as it rid me of those treacherous lumps in both of my breasts. I felt very happy after it, because my body knew most of the ‘evil’ was gone. So it’s definitely a positive thing, and I will celebrate in some small way. Emotionally, I’m so much better than what I was then, it’s hard to put in words. This forum had a lot to do with me getting better ♥️. It’s a special place 🕉. So did my current surgeon and her practice manager 💜💙. Anyway, to all the newbies, and all those struggling, it does get better. Hard to see that in the midst of despair, but nothing is permanent, so happiness and confidence will enter our lives again when we are ready to accept it and fight for it. Cheers to a cancer-free future 🤞🍀🥂NED and fantastic medical teams 💕
Today I am officially NED 😃🤩🥳🥰. On the 4 Dec, I finally had my left nipple removed, and today at my post op appointment results came back clear. After my nipple/skin sparing mastectomies in April, it was the last thing that needed removing as it had traces of DCIS. This surgery was supposed to be done in April, but long story short, I had problems with my first surgeon (anxiety and trust issues) and so I sought a second opinion, and consequently changed surgeons. Then, under my new surgeon’s care,I saw a fertility specialist, med onc, had bilateral radiation, and finally two weeks ago the nipple removal, which was done under local anaesthetic at my request. It was in a proper operating theatre, just that I was awake the whole time. And it was one of the most positive and interesting experiences I’ve had. There was no fear as I fully trust my new surgeon. She answered all my questions throughout, and we even had a good laugh about a mole I also had removed. Overall, it went remarkably well and I went home feeling really happy. Sometimes, I feel I have to pinch myself to make sure it wasn’t just a daydream, like I was having back in April and May when I was in my depression, not sleeping well, not eating well, and with heightened anxiety, all caused by my first surgeon in relation to this surgery. The way he wanted it done made no sense, it seemed unnecessarily invasive, I kept being told different things, and I got absolutely no information or support about my cancer in general. Meetings were rushed and there was no empathy or compassion. Also, he refused all other options of treatment I suggested, saying they were not possible. As soon as I saw my second surgeon, things changed. I immediately started sleeping well again, anxiety eased considerably and depression lifted completely. I was given loads of info, different treatment options and meetings were long, with detailed and very patient explanations. All my questions were answered thoroughly and there was genuine empathy and care. Polar opposites. Now, I no longer fear hospitals, and my trauma around surgery has eased considerably. Every time I have an appointment, I actually look forward to it and don’t stress and lose sleep. All my concerns are validated, and decisions respected. I get detailed answers as to why something needs to, or can’t be done. Also, all my suspicions about the things that didn’t make sense with first surgeon were proven right. I know that this is how it should always be, but unfortunately it’s not. Very definitely not. The treatment I get from my surgeon and her practice manager goes way above anything I could ever have hoped. Seeing them gives me a warm, fuzzy feeling, like the one you get when you hug your favourite teddy bear, or when you’re in front of a beautiful fireplace with a sizzling fire on a cold winter night. The feeling you get when you come ‘home’ 😊. It’s not something you can force, some people just have this gift naturally. I thank the universe that I am lucky enough to have found them (through this forum!) and today to be in this wonderful place emotionally and psychologically, and NED 🥰. And I thank myself that I listened to my intuition, as hard as it was at the time. I have since met many other specialists who are also brilliant. This ride has been difficult to say the least, but considering everything, I really can’t complain right now. I hope the universe continues to look out for me, and to keep beautiful people like these in my life (for prevention of further c, not treatment! 😆). I also wish the same to all you lovely ladies, also on this extremely unwanted ride. Good luck, don’t rush important decisions, and always listen to your body and intuition, as they know best! 🍀🥰♥️ Mon XxxBc at 39, changing docs and other joys
Hello to all the lovely and beautiful ladies on this forum. I have been reading comments for a couple of months now but have not yet posted. I was diagnosed in February with multifocal bilateral bc, HER-, ER/PG+, grades 1 and 2, stage 1 (only found out stage recently). I had skin/nipple sparing double mastectomy with tissue expanders on 1 April, 2 nights in hospital with 4 drains plus PICO dressing (which was put on wrong). I went private for the surgery but public for the hospital. At post op app I was told I would need another surgery for DCIS in left nipple. I felt smth wasn’t right and asked doc for different options. He refused everything else. I went to op but got slight fever while in prep so it was postponed. I ended up having extreme anxiety and depression, was unable to sleep and lost 6 kgs that month. I felt very unheard, unsupported and didn’t know anything about my cancer. I was paying privately to have consultations with my specialist, but instead I got the junior doc. I started seeing an onco-psychologist (wonderful woman), and my GP put me on anti anxiety and anti depressant tablets. I still wasn’t convinced about the surgery and felt time was being wasted waiting for anxiety to pass so I could have it, and thought there must be a better way, so I finally went for a second opinion (would’ve gone earlier but bc nurse told me I shouldn’t as it would be even more expensive so I was scared to). New surgeon (another wonderful woman) told me there were def other options and finally organised for me to see a fertility specialist (I’m 39), med onco and radio therapist all within a week. She said we can combine nipple removal with exchange surgery after treatment. Her practice manager sent me readings explaining everything related to bc under the sun. She explained everything about my cancer to me (incl stage), and all reconstruction possibilities including cons and pros of each. She even showed me an expander and diff implants. I finally felt informed, educated and empowered. I went from sitting on the couch, staring into space and crying all day to the way I was before - happy, talkative and looking after myself. I’m still coming to terms with my diagnosis and have bad moments. I decided against chemo and will start radiotherapy next week. I’m also getting Zoladex injections so I can start taking Letrazole after radio. I’m really scared of the side effects and just wanna run away and hide, but I am trying to be as brave as possible and hoping for the best. At least I now feel confident in my medical team. I used to be a very strong person, but bc I feel has made me weak and vulnerable. However I will continue to try my best. This forum and the ladies on it have become my best friends. This is where I sought solace when I was at rock bottom. All the supportive comments to each other have helped me find my strength, as we all share the same emotions and challenges. It has also been a source of invaluable information, especially during the time when I wasn’t getting any info from my first surgeon. Sorry about the extremely long post, it’s been a few months coming 🙂. I wish I could give each and every one of you a big bear hug in person. Lots of love to all Xxx Mon
Breast cancer stories on TV
A heads up, either a trigger warning, or a you might be interested. If you have Stan, Series 1 Episode 6 of 'The Bold Type' has a breast cancer storyline. I found it quite well done. A BRCA gene, young women's risk, the difficulties some have with the 'marketing' of BC, the emotional distress around testing.. I've not seen it done in a fictional setting this well before. The show's not great, but I thought this episode handed the topic well.
