Not sure where to turn for advice
Having been recently diagnosed with a 7.7cm tumour in my B-cup breast (luminal A, invasive ductal carcinoma) and no detectable tumours elsewhere, I've been scheduled for a mastectomy next week, followed by radiation, and possibly chemo, age 43. I don't want to have a mastectomy or subsequent treatment, for a number of reasons. Psychological firstly. Not having longevity as a goal. Not feeling I can physically show up and consent to disfiguring, aggressive and permanently polluting (of body) treatments - feeling that I'd rather die a natural death. Not fearing death. Not feeling any psychological aversion to what's in my breast, not feeling any pain or physical inconvenience from it currently. And also because if it hasn't spread in all the time it took to get that big, evidence that I've found seems to indicate it's not going to spread. (i.e. cancers between about 6cm and 15cm at diagnosis have about equal chance of also having been found in lymph nodes or elsewhere at diagnosis - the 15cm cancers were once 7cm but no greater chance of spread in all that time? Seems the horse has already bolted and is just hiding out dormant elsewhere in body already, or is just peacefully grazing in its own paddock and will never bolt, so either way what's the point in closing the gate / lopping the tit anyway?) I know this is such an unusual way of thinking and I'm having so much trouble getting relevant advice. If I don't get treatment what can I expect my body to do? I'm also very worried about causing distress to people close to me who still expect me to get these awful treatments, I feel pushed by their expectations to do something major to my body I feel personally averse to, I don't know how to tell them. Wondering how to not distress others in any way, seems to be the cause of the majority of my own distress. Any suggestions for where to turn for more advice, or if anyone has had similar thoughts, or evidence/articles to contradict the idea that cancer spreads early in its development if it's going to at all, or just impressions about this situation you might like to share, I would appreciate it. (I have just started seeing a general counsellor with no cancer knowledge, and have also contacted Cancer Council counselling and made an appointment but that will be in 3 weeks. I don't think they'll have the medical answers I'm after, anyway. More support and sooner and more relevant could be so stress-relieving.) Sorry for long post and weird topic.
Time to process
Hi All, my intro post. Such a roller coaster of emotions and processing suddenly going from perfectly healthy to not! I had a Diagnosis 22/12/23 IDC with 2.9cm tumor and lymphnode involvement from BreastscreenSA. ER and PR +, Her -. (Xmas is harsh to get such news, both in the slow down of services and in telling nearest and dearest) It has taken a while (necessary tests, scans and byopsies), but looking at treatment beginning Wed 28/2/24 with surgery (partial masectomy, axillary node clearance). Then most likely chemo, radio, hormone therapy. Overactive imagination has been a problem, general stress/anxiety, and not sleeping well. It is settling a bit now, as Ive met surgeon and feel comfortable I am in good hands, met with Breast nurse (and now have a bright pink pillow and lovely accessories pouch for fluid tubes). I am participating in a clinic trial that I meet criteria on that I decided yes to assist. I am going ahead on a planned and booked holiday next week (which several family are also going), the surgeon was supportive on proceding with this as mental health positive. Then it is full steam ahead! I am fortunate to have supportive family, and some great friends, some who have had a bc journey themselves. Was concerned about work for a while, but Ive let the h.r. depts know (two jobs) of upcoming medical, and am scaling back for as long as I need (casual events hospitality - high energy, physical and customer facing, they will still be there when I can manage again!) So I think I am in about the best positive I can be for now! Not keen on whats to come, but ok to get on with what needs to be done! Thanks for reading, and thanks to all those sharing posts and info themselves - it has helped.AWAITING SECOND OPINION FROM WBCI
* Previous post was accidentally deleted by myself (fml) * Is there a cancer hiding somewhere in this moderate to highly dense Fibroglandular breast tissue of mine? HISTORY: Age: 36yo Menstruating since 11yo Endometriosis - surgery in 2022. 2 children - 10yo and 5yo Recurrent mastitis infections since the birth of first child. Spontaneous and recurrent mastitis infections since 2019 - NOT related to pregnancy or breastfeeding. Every time was treated with antibiotics except for this most recent episode which started a few weeks ago (July 2024). Struggled to breastfeed both children. No supply or milk production despite starting motillium. Also paid a private lactation consultant with my second child. She alerted to me to my dense breast tissue and said I must have regular scans as cancers can hide. My new GP said 'this is not normal - let's get a mammogram'. FAMILY HISTORY: Significant family history of hormonal cancers on paternal Fathers side. Both paternal Grandmother and paternal Grandfather have significant cancer prevalent on their entire family bloodline. Every female on both of those sides has had breast, cervical, ovarian cancers or precancerous cells Every male on both sides has had prostate cancer, enlargement and /or precancerous cells. SYMPTOMS THIS TIME: Pain and swelling in right breast Pain deep into my right armpit Right side Pea size palpable lump - felt by both GP and breast surgeon Red rash that comes and goes - also a ring around the lump Profuse night sweats hot flushes - in the right breast only! Nausea Loss of appetite Lost 10kgs within 6weeks More frequent bowel movements As of 01/08/2024 - yellowing of my eyes BLOODWORK: FBC completed. CRP was 1.2 - previous confirmed mastitis infections were 138-147 where I was hospitalized. NO true mastitis infection this time. Increased Albumin levels Increased Iron saturation and ferritin (over 10x my normal levels) Lowered phosphate Further bloods were ordered yesterday to check extra things as my eyes have started to yellow. MAMMOGRAM AND MRI Haven't even found or noted the palpable lump that myself and both doctors can clearly feel. Both mention moderate to high dense fibroglandular tissue. Mamm - says I should have routine 6 monthly checks / scans possible ductal ectasia evident MRI - says I am fine - notes a cyst - but this is not a round or oval - there is only spiculated mass in several areas, so where the hell is this apparent cyst?? *GP has confirmed that the Mamm and MRI are inconsistent and has requested both radiologists contact her urgently. She has also requested the Breast Surgeon follow through with a guided biopsy at minimum. As we all know, these little pests can hide in dense tissue. GENERAL BREAST SURGEON Advised me that he is a 'general' breast surgeon and all my symptoms etc are pointing towards something rarer like IBC. He was transparent with me and said he would refer me on to a specialized surgeon if the mamm and MRI come back clean, as he is also suspicious of my symptoms, bloods, and significant family history of hormonal cancers - including my Father and Biological Sister. He is continuing to see me until we can get an appointment with Westmead Breast Cancer Institute, as he does not want anyone to drop the ball on this. He agrees, I need urgent second opinion from surgeons / specialist who specialize in this field. I am impatiently waiting for the WBCI to call me with an appointment. Their booking nurses were on holidays or had covid last week so no bookings could be made. GP and Breast Surgeon have referred me to Prof Elisabeth Elder and Dr James French for a further investigation. So, I am awaiting their call as they are part of WBCI. My questions - How can radiologists get this so wrong? I have snapped all the images that look sus and will attach. How do I advocate really bloody hard for someone to do a biopsy? I have deep dived into research from all over the world to find answers, case studies etc. And thank god I did, so I know to push really bloody hard for further investigations. Seeing case studies with reputable surgeons and oncologists who see women being misdiagnosed every day due to the density of their breast tissue. Its petrifying! I am not Dr Googling. But I am definitely researching reputable studies so I can best advocate for myself so I can live a long healthy life with my family!! *********************************************************** any advice, surgeons' recommendations, words of wisdom welcome. See my images attached.
38yo solo mama, what is happening?!
Hi everyone. I was diagnosed yesterday, a month after my first random trip to my sons gp where I asked her to just give her opinion. Right breast invasive ductal carcinoma. I’m sure that will start to roll off the tongue, everything here feels very foreign at this point. Question .. The GP is new to the area and wasn’t sure which specialist (surgeon?) to send me to. She’s sent referrals to both the local hospital and a plicate surgeon - but both sound like they’re going to take a few weeks for a consult. Not sure if I should call around and see if I can be seen sooner? Is it once I’m in they will make a plan and I’ll stick with them? Any advice would be wonderful, I feel incredibly out of my depth xx
Verzenio now on PBS for early BC, as well as Advanced BC, from 1st May 2024.
Great news - on the News tonight - this reduces the cost of the drug from $100,000 over 2 years to under $32 (approx) a script ($7.70 concession)! Media event date: 28 April 2024 Date published: 28 April 2024 Media type: Media release Audience: General public For the first time in 15-years women with an invasive form of early breast cancer that has a high risk of returning after initial treatment will now have access to an additional medicine thanks to the Albanese Government expanding the listing of abemaciclib (Verzenio®) on the Pharmaceutical Benefits Scheme (PBS). From 1 May 2024, Verzenio will be expanded on the PBS to treat patients with hormone receptor positive (HR+), human epidermal growth factor receptor 2 negative (HER2-), lymph node positive, invasive, resected early breast cancer at high risk of disease recurrence. Sadly, these women face a one-in-three chance of their cancer coming back despite surgery, chemotherapy, radiotherapy and ongoing hormone therapy. Breast cancer is the most common cancer among women and each day about 57 Australians are diagnosed. Early breast cancer is invasive cancer that is contained in the breast and may or may not have spread to lymph nodes in the breast or armpit. HR+, HER2- breast cancer is the most common form of breast cancer, accounting for around 70% of all cases. Verzenio works by blocking the action of specific overactive proteins that signal cancer cells to grow. This helps to slow or stop the growth of cancer cells. This life-changing listing is expected to benefit around 2,400 patients per year. Without subsidy, patients may pay $97,000 per course of treatment. The PBS listing of this medicine means eligible patients will pay only a maximum of $31.60 per script, or just $7.70 with a concession card. Quotes attributable to Minister Butler: “Every year thousands of Australian women get a life-changing breast cancer diagnosis. “The Albanese Government is working hard to ensure each one gets the latest and the best treatment at a price they can afford. “This listing of Verzenio will benefit thousands of Australian women, and is yet another example of how the Albanese Government is delivering on its promise to provide cheaper medicines.” https://www.health.gov.au/ministers/the-hon-mark-butler-mp/media/new-hope-to-treat-women-with-early-breast-cancer and on NBN News on Facebook: https://www.facebook.com/photo/?fbid=827492942746796&set=a.635131171982975 https://www.canberratimes.com.au/story/8608673/new-hope-for-aussies-battling-early-stage-breast-cancer/
Newly Diagnosed Locally Advanced Breast Cancer
Hello Everyone I recently got diagnosed with what they thought was DCIS but after all the ultrasounds, MRI, CT, PET scan, and biopsies, the diagnosed me with stage 3, Locally Advanced Breast Cancer. I am 37 years old (hopefully reach level 38 in January), and in June 2023, I found a lump in my left armpit. Not very big. About the size of a grain of rice. I didn't think much of it until a month later, I found a lump under the areola of my left breast. I had found those kind of lumps before in my right breast and got them checked straight away but they all came back as benign cysts. But I did the right thing and went to my GP. Rather than telling her about the breast lump, I mentioned about the lump in my armpit instead. She had a feel and thought it was just a gland until she asked if I had found one in the breast as well. I said yes. Straight away she gave me referrals for a mammogram and ultrasound. But I was so convinced that it would just say it was a benign cyst again, that I put the referrals up on the fridge and left them there....until November. By the beginning of November, the lump in my armpit was big. But the one in my breast didn't feel like it had grown. But I went and got the mammogram and ultrasound done and a few days later my doctor called me back in. I still remember, very clearly, my doctor starting to cry and apologising to me. I should say, my doctor is a strong woman and I have never seen anything phase her but she was crying and I knew straight away the results. Fast forward to now and I am currently waiting to meet my surgeon and oncologist. I'm not expecting to see them until the new year, despite being a priority 1 with the hospital. My official diagnosis is Stage 3, locally advanced Invasive Ductal Carcinoma. It is ER+, PR- and HER2- (as far as im aware unless i read it wrong). The weird thing is, every female on my mother's side that has had breast cancer (my nanna/mum's mum, nanna's 2 sisters, my aunt/mum's sister) have all had it in their left breast but none of them have had it spread to the left armpit lymph nodes like i have. They were all stage 2. I'm currently trying to get my mum to go and see the doctor because when I got my diagnosis, my stepdad quietly told me that mum hasn't had a mammogram done in 16 years and 18 months ago she noticed the nipple in the left breast has become inverted. Sorry for the long introduction to my story. I still haven't fully acknowledged what is happening. I hear everything they say and I have read all the reports, looked at the imaging. But I feel like I am numb right now. Nothing is fully registering and I have had some people ask me why its taking me so long to feel something. I honestly don't know.
how to stay positive on new diagnosis and journey
Hi everyone, I am a bit of a stalker..reading everyones comments, stages, feelings etc..but I think I need to face realtiy and share my story too as I am finding it a little tough to stay focused and positve. I am 53, I went to my regular 2 year mammogram screening (15/8, a bit later than the text to remind me...like about 5 months) and I got a call back, a bit shocked but shrugged it off as "she'll be right" and took myself off to the call back (30/8). After the 3D mammogram, ultrasound, physical exam and then biopsy, I was a little concerned, no, I don't think I could say concerned, I felt more uncomfortable being there. But the day started with 6 ladies in the waiting room and went down to 2 of us by the end of the day.. but again..."pfff I'll be fine", I don't feel anything wrong!! Well, went back to the screening place 6/9, on my own...again thinking I'll be fine!!.. I got my results and was completely shocked...the nurse says, well Sam, you have what we call DCIS..and then as she talked I heard blah blah blah. So off to my GP the next day to find a breast surgeon..."is this really happening to me"... and booked an appointment in 2 weeks 21/9. I went home and cried and then hopped on here and began my research. I am a practical person, I want to know my plan of attack so I can be in control...wow I am learning this is not the disease for plans or patience!! Anyhow, met the surgeon 21/9, finally with my husband this time, and was booked in next week 26/9 to cut the area out and send it to pathology. Patholgy results 9 days later, 5/10, tells us I actually have invasive breast cancer...on a good point, it is small 1.4cm on a not so good point it is grade 3. So, back in for another Operation 10/10 to biopsy my lymph nodes and take another exision of my boob and off again to pathology, will get the results next week 19/10. I just feel like I am trying to run through quicksand, I'm in no control, and every step I take forward to work out what we need to do, I seem to fall back 2 steps. Every time I am told only 5% get a bad result, only 1 in 20 get called back, usually 95% find the results are postive.... I am just over being in the minority, I am too scared to even think positive this time because I dont know how I get myself back up to fight this, whichever way it ends up going. I've read a lot of your stories and know I we all have different feelings and journeys, but to me I'm feeling quite lost and scared and I just can't focus, and that is just not who I am!!. I feel terrible that my business is suffering, my son is doing his HSC right now and this is such a disturbance for his studies, my husband has suffered from mental illness and I'm worried about his state of mind, and all the while my lymph node biopsy wound is bloody killing me!! Well, I may get a wrap for writing too much, but I feel a bit better just putting it out there and I think I will cherish the knowledge that I am not alone here.
Diagnosed last week- 1yr postpartum & still nursing
Hello, Sadly like many I'm new here! My story started in 2009, I was 32 & single when I was first diagnosed with invasive cancer. I was treated at the time with a lumpectomy, radiation & 5yrs on Tamoxifen. Seven months after my diagnosis I celebrated being cancer free with an overseas trip where I met my now husband. In July 2022, after 7 years of trying, & with the help of ART, we welcomed our little one, & she's a gem! Last week, just two days prior to her first birthday party we got the phone call advising me I have the same cancer again. I'm still nursing her 5-6 times in 24hrs, to any ladies out there in a similar boat, did anyone manage to keep nursing? I'm guessing we'll end up weaning quickly but the thought of that is heartbreaking (even though I know she's resilient & old enough, she just so little 😢). Side note, I'm still pending my treatment planning meeting but given the preliminary biopsy grades are higher than 2009, I can't imagine the road is going to be any easier than my first go around. Thanks in advance for any words of wisdom, especially when I comes to parenting litle ones during this time. 🙏
ILC & IDC found in left breast
Hi, Yesterday, I had my first specialist appointment to receive the results of my biopsy. The result showed that I had both ILC and IDC in the left breast. The iDC is 2.6 but the ILC was running in lines in the dense tissue. This measures about 6cm. I have been requested to get a breast MRI and a PET scan ASAP. I was working up to Tuesday and then I went home after the diagnosis. I'm finding it all a shock and my hope has diminished. Also, I have an elevated temperature and aches in my neck and lower back when i go to bed. This is relative a new set of symptoms and I've had them for a few days. I'm aged 49 and I have been relatively healthy and I don't tick the boxes for a person at risk for breast cancer. Further, I felt like I was over reacting by heading to the Dr a fortnight ago, I thought it was aging or hormonal symptoms that I was experiencing. Is there anyone else in our online community who has this diagnosis? Xx
