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
Do I stay or do I go?
Not your average post. Originally a backpacker from the UK, been in Aus 5 years and have moved onto a work sponsorship visa with my employer. I live in a very remote area and it is a 4 hour flight to my nearest 'treatment centre'. Two weeks ago it was confirmed (via biopsy) that in my left breast I have a 2mm invasive mass, and 10cm of non invasive DCIS. I had a contrast mamo and PET scan (no result yet) and scheduled for an MRI on the 6th June, and appointment with the surgeon to discuss options on the 10th June. My breast dr said the surgeon will recommend a mastectomy due to the large area of DCIS. Possibly chemo, radio and hormone therapy. They are also talking about what I want to do with my eggs. I am so scared, and I am not sleeping. I am only 34 years old without children. I don't know what to do, do I stay here in Australia and undergo the treatment recommended and stay near the hospital with the mother of a friend (who has also had breast cancer and has said she is more than happy to support me through required treatment). I love my life here that I have built over the past 5 years, and I love my job. I am scared I will lose my job with the next few months of treatment coming up (very little can be done remotely), my visa is tied to my job. I may get deported mid way through treatment? I dont know? I know I should speak to an immigration lawyer but I am already inundated with administration from cancer. My family back home are very supportive and will support whichever decision I make. They and I am also wary of the health care system back at home (which isn't in great shape). If I go home, I will take all my diagnosis letters and scans, but I will still have to start this process again from the start and basically be told twice I have cancer and they want to chop my breast off. I wont be able to get a job due to appointments and treatment, and wont be entitled to benefits as I haven't paid tax in my home country for 5 years. Its not just cancer anymore, I am not scared of the cancer as such as my whole life here being ripped away from under my feet. Sorry for the long post. I just don't know what to do for the best. Either way, I need to stay here until I have the full picture and know what the surgeon wants to do.
Overwhelmed new diagnosis
Just trying to cope with this whirlwind of a ride. Two weeks ago I was happily holidaying on Hamilton Island (the first holiday in three years) and this week I'm isolating at home after a positive Covid test, only to be told that I have Breast Cancer. Surely this week could not get any worse. The surgery, that was scheduled on Tuesday, has been postponed for three weeks due to the Covid, with chemo starting after that. All this, and not to be able to even get a hug from anyone, makes this journey feel so lonely and isolating. Being at home with time to spare is not helpful. Especially now that the Covid symptoms have abated, I don't even have a reason to try to sleep it all away (even for a short time, to not live with the constant thoughts, is reprieve). It's a lot to take in. Oh, and I forgot to also mention, that my surgeon is retiring this week and now I am being "handed over" to a new surgeon, which, of course, I am unable to meet with yet - due again to this horrid Covid. So it's all a dreadful waiting game.
recovery and life
It has been a week since my surgery for the lumpectomy and node removal. Funny enough, I was not nervous. I went into surgery calm and with the attitude - I am in good hands. Surgery took a bit longer because I found out today they got a rather nasty surprise.....the lump measured 8.5 cm or 85mm instead of the 2.5 cm they thought it was going to be. In their words "it was angry". With my slightly dark sense of humour - all I thought was "you would be angry too if someone came and threw you out of your comfortable home!" However, i know that 'angry' is not a good phrase in medical terms. The nodes biopsy hauled out 5 and 4 came back positive with the 5th showing signs of being 'annoyed'...clearly another medical term for "Not happy Jan!' This afternoon, I am being 'rushed' in for a full body cat scan and on Monday a bone scan is to be done. The medical team were hoping for both scans to be done tomorrow so they could have the results to be back for the conference being held prior to our meeting Monday afternoon. Alas, they will only have the CT scan. The doctor was truly fantastic in her delivery of how things had gone and she gave me time to try and catch my breath again. Once we had finished talking, my Breast Care Nurse called and confirmed the appointments, requirements for them and then asked the important questions - "How are you feeling??" - shell shocked again but to be honest, I had a 'feeling' that there would be more to come. So, come Monday - a new ball game will begin and this time the team and I will be going in to win the game! Oh yes by the way - the scars have healed amazingly. had 1 really rough day out which had me in tears, I found as long as me and my new best friend - my little u-shaped pillow go everywhere together - I am comfortable. Hope you are all coping with the lock-downs and life is throwing you giggles, chuckles and laughter. Lois xx
