Neck dissection
Hi all, I was diagnosed with Inflammatory Breast Cancer in Oct 2024 involving the left breast, skin and lymph nodes, I was 46. My cancer is hormone positive, progesterone negative and HER2 positive. In terms of treatment, I’ve had the following; Chemo (Taxol, AC (red devil) and Kadcyla) Full cycle of Herceptin Left mastectomy and full lymph clearance Radiotherapy Letrozole for 3mths, changed to Anastrozole almost 6mths now Zoledex for 6 mths Bilateral Oophorectomy (removal of both ovaries and tubes) Zoledronic Acid every 6mths 3 weeks ago I found I lump in my neck and yes after only 13mths of being cancer free my cancer is now metastatic with multiple tumours above my collarbone and neck. We are from Broken Hill so travel to Adelaide for treatments. Since discovering the new tumours, I’ve had the right breast removed and am now back on chemo but different protocol. I am now stage 4 with no hope of a cure. My breast surgeon advised that surgery would not be an option. The issue that I have is that because 1 of the tumours was already part of the original radiated area from last years treatment, my are not able to provide a meaningful dose of radiation. Whilst having the discussion with my radiation oncologist, she said “what about surgery?” We had the discussion that surgery wasn’t an option etc however she went on to say, “yes not for a breast cancer surgeons but other surgeons would be able to do these types of surgeries all the time” and she goes on to name types of surgeons that could perform surgeries on the head and neck. She takes it up with the rest of my team the following day at the weekly MDT meetings and when I had my next meeting with my oncologist he tells me it’s a viable option and that he has referred me to 2 surgeons who are able to perform the surgery. This was last Thursday 27th Aug. I then met with the 2 surgeons last Thursday who went through the whole procedure, explained that although they do this type of surgery (left neck dissection with clearance) it’s not done for Breast Cancer as it’s not often BC spreads to the neck etc. Because of the aggressive nature of Inflammatory Breast Cancer they want to do these types surgery asap to prevent further spread to the head, so I was given a date of early October. I am very apprehensive about this surgery. I did sign the consent form but I am still in 2 minds. My entire team believe that the surgery will give me the best outcome of prolonging the spread of the disease and made it clear it will not be a cure. I am interested to see and hear from someone who may have had this procedure or anyone that is going through Inflammatory Breast Cancer itself. From diagnostic scans to diagnosis to treatment my entire journey has been at an incredible pace once again due to the nature of the aggressiveness of my disease. I feel overwhelmed and would appreciate hearing from someone in a similar position. Particularly in terms of the recovery and long terms effects of this surgery. I did get this from my team but I think it’s always better to get a lived experience perspective. Thank you in advanceInflammatory Breast Cancer
Moderator moved @MissL post from activity section to 'Newly Diagnosed': Hi ladies, I'm still in the testing stage, but have been told I have Inflammatory Breast Cancer, in Breast, skin & lymph nodes. Biopsies tomorrow 14 Oct, PET & Heart Scans 15th, Medical Oncologist 16th, Breast Surgeon 18th for results & chemo regime. Already been told will have to have 6 months chemo - very daunting, all my support overseas.
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.
Radiotherapy twice a day!
Oh the joys of having a rare cancer! I meet with my radiotherapy guy today, supposed to be one of the best in the field, really lovely and very willing to discuss things. I was there for an hour. He told me that the current standard for Inflammatory Breast Cancer is treatment TWICE a day, either four or six hours apart depending on which school of thought you follow. Has anyone else been through this? I was pretty gobsmacked tbh, I had psyched myself up for every day but twice!!!! Not just the logistics, if I can’t drive myself I don’t know what I can do, but there wouldn’t be much recovery time.Single or double mastectomy
Since being diagnosed with Stage 3 Inflammatory Breast Cancer in March I have been pretty clear that I want “a double mastectomy, no reconstruction and fab tattoos”. My breast surgeon is actually the guy who first broke the news to me when I ended up in hospital thinking I had an infection and I have seen him twice since. He has always said that having a double didn’t make recurrence less likely (I have a tumor in my right breast and there were some cancer cells in my lymph nodes) but that we will take about it nearer the time. Well, I see him next Friday prior to finishing Chemo in 2 July and my oncology says surgery will be around three weeks after that so now it is time. I know I am the only one who can decide but would love to hear from others who had to make the same decision. Lumpectomy is absolutely not an option, it’s one or both off. I am also wondering if choosing a double will have cost implications, I have found out about gap fees in the private system the hard way so if he says it’s not medically necessary is that the choice taken away from me as I certainly can’t fund it? I would be very grateful to hear what others did.IBC...would love to connect with others
hello i have IBC, inflammatry breast cancer, I would love to connect with others with IBC, to be able to chat about this insidious disease. I have had 6months with a triple dose chemo, double masectomy and about to start radiation, its been a crazy ride since september. Ive been told this is rare & aggressive but fight I shall. thank you
