Is "Brian" the new Farnham??
So.......I thought I had given my lump "Brian" a beautiful farewell concert, complete with audience, drinks and a hearty "F...k Off Brian" back in March. At that stage, I was cruising through the Stage 1, grade 3 euphoria of "You got this Girl!" Doctor will do a Lumpectomy one morning, rip out a few nodes, dose of radiation and some pills just in case. Oh yeah, I was still scared, but I was being told - "we" got this!" "Brian" has left the building!!! So......the discovery of a 85mm lump of "Brian" and 4 positive nodes and 1 pissed off node, caused panic and it is now Mastectomy time. The family and I throw a "Fast and Furious" Movie Marathon as a Farewell to "Lefty". Receive a beautiful Love Note from my oldest daughter thanking "Lefty" for being an amazing breast and the Husband gets the final touch.. Rocked up for surgery on 6th May -it goes really well. Up and about that afternoon walking with the drip in my room, that I share with a 72 year old Lady who "Screams" in her sleep, calls out my name nonstop, refuses to eat and sneaks off for cigarette breaks. I wanted to go home just so i could actually sleep and rest!!! Anyway, 2 days after surgery, Dr. (I am God) Bolshy turns up with his entourage of Junior Registrars and says - "you can go home and by the way you are now Stage 3, Grade 3 and walks off." W.T.F. Did you just say? I had to chase this Bastard down the hallway and make him come back to my room!!!!!!!!!!!!! he refuses to tell me anymore other than you have jumped from Stage 1 to Stage 3 - the surgical team will tell you. I met up with the Surgical team last week and all hell breaks loose! "Brian" made a comeback!!! In fact "Brian" had been a busy little Lead Singer - shacking up with as many "Cell Groupies" as he could find the energy for and also shacked up with a Node (making 5 positive now and 1 annoyed) while spreading the love around! All he needed was 3 weeks of love action and he had created another 2mm aggressive growing "lump" near the original site where he was sliced/diced from the show and left his love juice in the form of 18mm of "Baby growing cancer cells" in my milk ducts. I am literally so shocked, I am unable to talk, comprehend or make any sense of what i was being told. What happened to "We got this??" Even though I am told "Brian is gone" and all is well - I am wondering if "Brian" is going to do a Farnsy and keep on making a comeback tour??? Anyway, IF Brian has left any love juice in my body or is thinking of making a 'Come Back" tour - He is in for a rude shock! I have a new band signed up to play in my body - SHE is called "Chemo and The Chemicals".....playing Centre Stage for the next 5 months in LOIS TOWN.....!! (lol) My new Motto: Find positivity in the little things and Use your words to defeat adversaries! Big Hugs Lois......who is not a Doctor's doormat.
Newbie…long story
Hi everyone, Newbie here. Never dreamt I would be joining this club, but who does ?! This forum and website have been so helpful to me over the past month. My journey started last June when I decided to speak with my GP about a tender spot right on the inside edge of my left breast. She reassured me that tenderness isn’t typically a symptom of breast cancer, but we would check it out. Got an ultrasound and mammogram. US identified a small mass, mammo some calcifications. Got an us biopsy around October, all clear. Then around Christmas I noticed some brown nipple discharge (took a while to accept it was coming from the nipple, thought I had spilt something…. Every few days in the same spot!!!). Back to the GP, another ultrasound. The report said there was “debris” in the duct, couldn’t exclude papilloma, MRI would confirm, surgical consult recommended. So off for the consult, after which I was told the discharge was due to trauma to the breast from the biopsy (they didn’t send me for the MRI). This was purely based on discussion and very brief examination. In hindsight and knowing what I do now, I would have pushed back and demanded the MRI regardless. Relief! But my GP wasn’t convinced. She sent me for an MRI then a consult with a specialist breast surgeon who, after looking at the MRI, immediately sent me for some MRI and stereotactic biopsies…2 in my left and one in the right. That was a bit of a marathon! I was convinced it was all a waste of time and money! I turned up to the surgeon for results unconcerned…obviously rather naive! “You’ve got a lot going on in your breasts!” were her first words. LCIS and papilloma in my right breast, DCIS and invasive Mucinous carcinoma in my left. I was speechless. Shocked. Bewildered. Confused. We briefly discussed next steps, but I couldn’t get out of there fast enough! I called my husband in tears. We went back together to the surgeon the following Monday, after doing a bit of research, lots of reading, and chatting with a wonderful McGrath Breast Care Nurse. After asking more questions, I decided on a left mastectomy and right lumpectomy. Plus sentinel node biopsy on the left. But I was so angry. How could the first surgeon send me away without really being sure??!! I went through all the feelings, disbelief, anger, sadness, grief, a bit more anger, and finally acceptance (mostly anyway!!). I realise I have to let go of the anger, and am taking it on as a learning - it’s important to advocate for our own health and not accept something too easily if it doesn’t seem right. Hubby and I had a two week holiday booked up north the following week, which the surgeon said was fine, so we booked surgery for August 13, ten days after we would get home. The holiday was great, we hadn’t told anyone at that point (except my mum and work). We were able to not think about it and had some really special time together. It was good to have the space and time to process what was happening. so now I’m one week post surgery, contemplating the future, keen to get back to everything I used to do. I had been training for a half marathon in September, which of course now won’t be happening. We are hiking the Overland Track in February, so that’s what I’m aiming for. I’m so very lucky to have an amazing, competent, supportive partner. He has taken the same time off work as me to support my recovery. He even washed my hair for me yesterday :-) Recovery is going pretty well, although I’m often still uncomfortable in bed. Getting the drain tube out a couple of days ago was wonderful! We go back to the surgeon next week (two weeks after surgery) for dressings etc and results. Fingers and toes are all crossed! Thanks for getting this far, there’s something a little cathartic in writing this down. I’ve really appreciated reading others stories, it helps with knowing we are not alone and the feelings are valid. Thank you :-) Belinda xx
Thankfully I know more this time.
So, 7 and a bit years after a Stage 3 E+ PR+ breast cancer diagnosis in the left breast, I am facing some changes in the right breast. Picked up in yearly mammogram/ultrasound. Nobody has suggested it is cancer just yet but given my history I am booked in for a core biopsy next Monday. I am very clear in my head about what this means for me. I have been happy with my choice of single mastectomy for the last 7 years but am not about to take any chances with the remaining breast. Regardless of the results of the biopsy, it’s days are numbered. Monitoring changes in a very dense breast is not what I want. Having had a mastectomy I am quite ok about having a second one, especially if that is all I need. The changes are new since my mammogram and ultrasound last year. Just goes to show that keeping up our regular checks is sooo important, even in our current Covid 19 world. Very reassured by the excellent treatment of my situation by the staff at the Radiology facility this morning. I was treated respectfully and everything was clearly explained right then and there. As you can imagine though, I am finding it hard to concentrate on anything else at the moment. Will be glad when the biopsy is done and we have the results. But I am sure that a mastectomy is what I want regardless.
All Clear happy and healthy, BUT pre admission tomorrow for Mastectomy/Recon struggling mentally..
To say its been a tough week, has been an understatement even after a recurrence multiple surgeries and treatments over the past 6yrs. As much as I knew it was coming, I wasnt prepared for the call from Hospital for my pre-admission tomorrow. 19 months on from a lumpectomy, 13 months post chemo, happy, healthy reclaiming my life. The mental torture has been relentless this week, knowing I'm WELL but in light of a recurrence don't gamble Melinda, do a Mastectomy/Diep flap reconstruction. Even knowing deep down its the best thing I could do, I still struggle with the loss, the prevention, the surgery. Its always been my struggle getting to this decision now it is here, I don't feel any different, I'm still struggling with it. I can be honest, I'm scared, petrified of the actual surgery, the recovery, the loss, the end result. Struggling with feeling Im damned if I do, damned if I don't. Maybe I'll feel different once it's done? Ive looked at it every which way possible, and its just so mentally challenging when I know Im so well...the tears havent stopped. I will also be mostly alone through recovery as my kids are going to live with their Dad as its easier for them to get to Uni and my baby in VCE. Whilst its the right thing for me to do...am heartbroken to not have them with me loving and supporting me. My Partner lives an hour away, due to work and life will only be able to manage at different times. Another reminder of traveling this road nearly 7yrs without my Mum, lucky to have my Dad who wants to help but is 77. Inspite of all this, knowing how incredibly lucky am I really!!! how dare I be sad, upset, angry, so why do I struggle, don't know how to resolve this for myself?? I've always been proactive, positive and upbeat...hoping its purely the fear thats getting in the way...
Bye bye boobs
Five days to go until I farewell my breasts. I am comfortable with my decision but nervous about the emotional impact of the outcome. How can you anticipate an amputation of this nature, physically or mentally? I'm not afraid of medical procedures or pain (eight and a half hours of labour with no painkillers pushing out a 9lb11oz baby...), but I am nervous of being under for 8 - 10 hours. My low blood pressure issues and collapse a few weeks ago are playing on my mind. My GP is being cautious and doing some heart tests and I'll be having a good chat with the anaesthetist. I'm comforted by the people who've gone before me and say they have no regrets. I know I'm doing the right thing, for me and my family. My lovely breast surgeon agrees. However I am sad. My breasts are actually a body part I liked. We've had some fun over the years; it's challenging to say goodbye to such a delightful erogenous zone. Nerves and apprehension have been rising as the operation's approached, but have been mostly under control. However last night, after a busy day of distraction, the moment I turned off my light I was swamped with anxiety that went on all night. I had a shocker. The valium I took at 3am didn't help (it was only a 2). I'm a member of the Choosing Breast Reconstruction Group but it's pretty quiet over there so @iserbrown suggested I post here too, so you all can keep me company through the next bump on this wretched rollercoaster. Black humour welcome!What The Heck Radiation and Chemo? What to do and the side effects, are freaking me out.
In July, I had a mastectomy with lymph nodes out, then they found cancer somewhere else in the body with completely no relation to the breast cancer. If the breast cancer wasn't enough. So, now I have to deal with the other cancer site, which is colorectal, and I have just had an appointment with the radiation and chemo doctors at Royal Brisbane Women's, and I don't mind admitting I'm freaking out. The side effects of the 50/50 cure seem to be so much worse than the actual disease. Yes, I know that the disease, if left to run riot, equals, you know. But, after all these years of funding and funding, why do we not have something better? It's so weird that since my surgery, I have had posts popping up on my socials left right, and centre. Like the "Cure from Japan with Bee Venom" seriously makes me want to find a hive and fly into one with wanton abandon. A "Breakthrough in South Korea, scientists can turn cancer cells back to normal cells," .. Say WHAT? (frantically looking up flights to S Korea) Then there is Ivermectin, Febendazole, and something blue? I mean, I have never paid attention to these things before, but now, my ears prick to the slightest twitch and rustle, like a kid who hears a lolly bag open within a 10-mile radius. I can't help it, I am confused about everything, am I the only one? When I confronted the chemo doctor about all of my concerns and questions, he said If you don't do this, you will be in palliative care in 3 months .. What, hang on what the heck???? I mean, just like that, he said that without any pause or thought, I was never advised that before, and then said, "Whatever you decide, we start therapy on the 28th July, and proceeded to walk out. This journey is brand new; everything has happened since July, and it is no lie, akin to riding a faulty wooden roller coaster with loose nuts, bolts, and rotting timber, operated by a maniacal, crazy clown, in the middle of a thunderstorm, who looks like he has been dragged through a hedge backwards. Just to clarify, the clown is the cancer. I have questions, a thousand of them, with no end of these questions in sight. Where are the natural alternative therapies, like, singing bowls, or is humming drums? What about the milk from an Aztec goat? Yeah, or the petals from a rare flower that only grows on top of some hidden temple in the Amazonian forest, which, on recent reading, is currently swarming with giant anacondas in a breeding frenzy, ugh! Ok, I made up the goat and flowers. No, there is only radiation and chemo. Sigh! I don't know what to do with this option. I have been told my cycle will be 28 days straight of radiation with chemo. I can look forward to a burning bum hole, diareah, burnt skin, possible issues with legs and bladder, and kidneys, and all sorts of other stuff. However, I was told that everyone is different and responds differently. Well, I have to say I don't feel that comforted at all. I am overwhelmed. If anyone can share with me their experience with radiation and chemo, I would love to hear from you. And if anyone knows where I can get my hands on an AZTEC goat in Brisbane, I would love that too!! Goats are ravenous but cute.
Thank you, my friend
Thank you to my special friend. We met several weeks ago at a clinic where I was waiting to get pre-surgery blood tests and she was waiting for a physiotherapy appointment. We smiled then got chatting, as people do. Having heard my BC story and that I was alone she was at the hospital with a beautiful bunch of flowers and a special bottle of wine when I came out of theatre. It was such an amazing feeling to not be alone after all. We have caught up since and she kindly lets me use her computer instead of travelling to the library. In the meantime she makes me a cuppa then we sit and chat. She has three of the cutest animals who each give me their own brand of comfort. This week I confided my deepest darkest secrets to my new friend and she told me she also had breast cancer 3 years ago. No wonder she knew what I needed. Thank you from the bottom of my heart.<3Still struggling with the word pre-cancer after DCIS mastectomy
I was diagnosed with low grade DCIS in my right breast in Nov 2019 and had a mastectomy in Jan 2020. I am 38 years old. I saw 2 specialist and both recommended a mastectomy because I am small breasted. Had an expander put in, awaiting for reconstructive surgery which has been postponed due to covid19. I am now clear without needing further treatment. My surgeon/breast care nurse/GP all refer to DCIS as pre-cancer and I struggle with this immensely because I need to feel that the choice I had made was justified and worth it. I lost my breast, it may be small but it was mine. This is not just about losing my womanhood, I felt I lost a part of me that made up the person I know myself to be. Because of this word I don't feel like I have saved my life, I didn't even have cancer. I know I should be grateful that I didn't have to go through radiation or chemotherapy or take any meds but to me a mastectomy is a very drastic treatment. How do you even explain it to other people? Nobody knows what DCIS is unless they have it, do I say I had pre-cancer? Is it wrong to say I had breast cancer? 5 months on and this is still keeping me from moving forward. At yesterday's Psychological Impacts webcast, someone asked Dr Tottman this very question and I was basically yelling at the screen "this is exactly how I feel!" So I now know there are others who are just like me. I hope to hear your stories and thoughts about how you are dealing with this particular issue.
Compass (ABC) The Breast Decision - NOW - should be on iView soon
Sun 18th May - Compass: The Breast Decision - now available to watch on ABC iView https://iview.abc.net.au/video/RN2411H008S00 BCNA was 'shown' in one segment. Charlotte Tottman is interviewed re her own decision on choosing to go flat and how her breasts were very important in her sex life with her husband - but they'd 'done their job' on raising her 4 children .... Yes, She misses them - but in her words, she looks in the mirror every morning for 5 secs and says she 'is not too shabby'. She encourages women to look at themselves every day for 5 secs - and to also share their scars with their partners & even their children, so that they are 'a part' of the recovery.
