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
Feeling challenged by clothes shopping?
I'd like to reach out to other women who find it hard to buy clothes because of changes to their bodies brought about by breast cancer. I'm almost 60 now and have lived with a mastectomy for over 20 years, with a handful of those years as a younger woman dressing around a reconstruction that I had removed back in 2006. I have felt quite frustrated over this entire period with how hard it has been to find clothes with high necklines that don't gape and that also disguise the imbalance I have in my breast shape and nipple outline. I've never regretted having the mastectomy - but have been really surprised at how down I would get with clothes shopping, for I consider myself to be a fairly strong and resilient person. Over a decade ago now I surveyed 423 affected Australian women about difficulties they experience - and realised some of us live with quite a significant and silent problem. About two years ago I approached the fashion industry to see what could be done for us generally, after struggling for months to find an outfit for my daughter's wedding. I met with some very supportive retailers and from there sourced a web developer to build a fashion site tailored to our needs. It includes a filter that enables browsing by selecting for a whole range of design features that women after breast cancer seem to look for but struggle to find - e.g. loose sleeves for lymphoedema management, high necklines and disguising patterns to name a few. The site is called Pink Collective Styling and it's listed within the BCNA Service Directory which is found under the Menu Tab "Understanding Breast Cancer", then selecting for "Find Services & Support Near You" and then "Physical Appearance Support". This has just been a subject that has got under my skin over the years because I feel it's an unnecessary burden to have layered on top of all the tough decisions that go with breast cancer and getting on with life. I am keen to hear from anyone who can recommend a fashion label or retailer that you've found offers a great range that 'works' for your needs so I can continue to grow the site and make it as broadly useful to the breast cancer community as possible. I'd also be very keen to hear where the site doesn't quite cover your particular needs if you too find clothes shopping a struggle. Julie
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.
Long messy ramble - fertility after BC - needed a vent (thanks & sorry!)
Well once again I havent stopped by here for a while. I have been feeling too sad and needed to get my thoughts sorted out a bit better before trying to write it out. (this website is very cathartic) In December I decided to be proactive with the idea of starting a family since I had been given permission to stop taking Tamoxifen (Yay!). I excitedly went and had a blood test to see what my ovarian reserve was like after chemo/zoladex/radio. Unfortunately the results were so low we were told that we would have to do IVF as soon as possible at a cost of over 12k (which we dont have) but the specialist wanted me to have another blood test in Feb 3 days into my period to see if my AMH results improved at all. I had the original AMH test very soon after finishing tamoxifen and my Dr thought it may have influenced the results. My result in December was: 2 At my age (37) it should have been between 17 and twenty something (27?). This news was just heart breaking. I know that IVF doesnt work for everyone and is a crazy emotional rollercoaster that costs money we just dont have. I started looking into accessing my Super which apparently you can do for IVF and there is some company that helps with the from at a cost of $200 Anyway. Waiting for Feb to have the blood test was a long wait so we decided to just give it a go naturally in the mean time. I started taking the right vitamins and ditched the condoms. I had been feeling a bit weird and started to wonder if we had managed to beat the odds so off I went to buy some home pregnancy tests. They were positive! Straight to the GP the next day to confirm with a blood test and yup. I was pregnant. We just couldn't believe our luck! Being pregnant after BC treatment automatically deems you 'high risk' so I tried desperately not to get too excited but it was just impossible not too. When you can feel your body changing there is no way you can not think about it and all my blood tests were coming in with good numbers so things were going well. Being high risk means you get sent for ultrasounds much sooner than normal so we had four all up. At the 3rd we got to see a little squiggle with a heart beat and by ultrasound 4 its little heart had stopped. I think it was called a missed miscarriage. Its when the baby stops growing but your body doesn't realise. I was still getting all the symptoms of being pregnant but it wasn't ment to be. The standard next step is to wait 2 weeks to see if your body passes it all naturally, if not you need to go in for a procedure. It was the hardest 2 weeks ever. I couldn't go to work as I was convinced the final part of the miscarriage would start while at work and it takes me an hour to get home on the train - there was no way I was going to spend and hour on the train bleeding and bawling my eyes out! I ended up needing to have the procedure which went well. By that point I was just happy to get closure on that front. So it has been two weeks since the procedure and I now have my annual boob ultrasound and mammogram next coming up next week. While I was pregnant my 'normal' boob was crazy tender where as my operated on boob was just occasionally feeling weird. Since my hormones have been coming back to normal I have had a whole bunch of pimples and my operated on boob has been feeling weird more frequently under my scar. I am so emotionally spent that I am now stressing more than normal about the upcoming check up. I was only pregnant for 2 months but my cancer was hormone positive. I have read stats that pregnancy doesnt cause cancer but as I said, I am emotionally wrecked at the moment, the combo of hormones and not sleeping doesnt help! I havent had time to fully process the miscarriage yet. I know it sounds dramatic but I am scared that this was our one and only chance. I have always been a very positive person and after going through BC I thought everything else would be a breeze. I couldnt have been more wrong. It has taken me awhile to figure out why I am not handling this as well (hahaha) as I did BC but I realised that my escapes during treatment were facebook, tv & movies. It seems at the moment every facebook post is another friends pregnant belly, pics of adorable babies and people posting about how amazing it is to be a parent. TV and movies are just as bad! While I was pregnant I was researching baby stuff online and now all my pop up ads are baby related. There just seems to be no escape! Logically I know that we can try again and IVF might be an option money permitting. I also know that if we cant have children it isnt the end of the world - I mean. I beat BC! I should be happy right?! I guess I am just grieving. Looking forward to progressing to the angry phase instead of sad. There is no real point to this ramble. I was just hoping that having a little vent would help. I thought things would be easier since treatment finished but I guess the roller-coaster ride continues.
