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.391ViewsSign in to react to this post3CommentsInvasive Lobular Carcinoma Diagnosis
Moderator moved @LJS comment to own discussion post in 'Newly Diagnosed': LJS Brisbane, Qld I have just been diagnosed with early stage invasive lobular carcinoma in my left breast. The shock and horror of the diagnosis has left me a mess. For a very healthy person, I couldn't believe it. Always had my two yearly mammogram and no symptoms at all! The staff at Breastscreen Qld have been amazing...so kind and empathetic. I am now to make an appointment with the surgeon. Trying to stay positive and work out how to tell my family is so hard. This online group seems a wonderful support. Be strong everyone says. So hard.ViewsSign in to react to this postCommentsILC Stage 2
Moderator moved @tarshy post to 'Newly Diagnosed': tarshy Well hello! My last post failed as terrible at computers and unless straight forward, well.... First "fist full" of breast removed for ILC stage 2. Know this differs from other forms of breast cancers and interested in other people's treatment plans. Awaiting results at present.ViewsSign in to react to this postComments
Genomic Testing
Hi, I was diagnosed 1 month ago, and had a bilateral mastectomy last week. My tests came back yesterday and although one Lymph node was clear, another had minimal cancel cells present from my left armpit. Apparently i am a N0 category. Although my surgeon is going to get other doctors opinions etc if i should go ahead and have chemo, i thought i would research Genomic testing too. I have my oncology appointment this week. I am stage 2 (not sure if A or B ) , ER+, PR+, Her2-. Is there anyone that has recently done the test, if so is it possible to give me abit more info on it, cost, timeline, name of test etc. Thank you in advance, this has been such an emotional ride so far, but i am grateful to have had it diagnosed early.ViewsSign in to react to this postComments
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? XxViewsSign in to react to this postComments
Awaiting surgery pathology, so many questions re treatment possibilities, timing etc.
Hi everyone, this is my first post here. I was diagnosed with ILC 24 Feb, had a left mastectomy 17 March with ALND as there was cancer in the sentinel node/s. I have an appointment with my surgeon this week (30 March) where I will find out my treatment plan and pathology results. I had 2 tumours biopsied 20 Feb, both were grade 2, one pleomorphic, the other non-pleomorphic, both are ER and PGR positive, HER2 negative. I was not given the option of reconstruction as the cancer was too close to the skin to safely conserve it. I'm 49, fit and healthy, have been cardio and strength training 4 days per week for over 6 years and have been walking my border collie puppy about 25km per week since Christmas, so I'm really hoping this will help my body get through treatment as best I can. Now for the questions, For those who had ILC with lymph node involvement, were you always offered chemo and then radiation and if so how long / frequent was your treatment? How long after surgery did you start chemo? I have been offered to go on a fantastic relaxing holiday 10-17 April and am hoping to go as we've had to cancel our original holiday plans that were to start at the end of this week. I have booked in to have my eyebrows tattooed (featherbrows), if you had this this done prior to chemo treatment, were you glad you did? If you originally had a single sided mastectomy did you choose to remove the other breast at the end of treatment? The CT scan I had recently found no signs of matastasis which I'm clinging to, however a rather large mature teratoma was discovered on/near my ovary so it is likely I will also have a full hysterectomy including removal of ovaries and cervix. Given that estrogen needs to be blocked and I'm currently premenopausal, this is the likely recommendation given my diagnosis. I will find out soon, but I'm expecting this surgery would occur after radiation therapy. Any other advice is most welcome, xoViewsSign in to react to this postComments
Newly diagnosed
@Vix1963 message moved from the activity section by BCNA moderator. Hi peeps Last 7 days been a whirlwind- HISTORY-24 years ago I had two lumpectomies ,one from each breast - both benign. Have had regular mammograms ever since EXCEPT 2020 when Andrews shutdown screening . So it was three years between my last mammogram and this one. So, December 22nd 2021, I had my mammogram. January 20 a BreastScreen call delicately saying that specialists had found a concerning area, could I come in for further tests. Jan 21 I had all the scans, counselling , 3D mammogram and finally 3 biopsies. January 27 called in earlier than original appt made. Doctors sat with me-have just been diagnosed with Invasive Lobular Cancer in my L Breast- Grade 3, Stage 1, HERS 2/3 Then sent off to my GP for referral to Breast Specialist in hospital. QUERY- would you recommend a hospital close and easy access to family (that would be ONJ/Austin) OR hospital close to my home and the beach for respite in between treatments (this would be Frankston Hosp) what do you suggest? Note- Austin is also where I am waiting for my hole in heart to be repaired, and GP says this needs repairing before I start Breast treatment due to clotting bla bla -which hospitals did u go to? Or highly recommend? - what’s the time frame for everything now? they want me to have Chemo prior to surgery (do I lose my thick waist length hair?) thx for readingViewsSign in to react to this postComments
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