AWAITING SECOND OPINION FROM WBCI
amyf798
Member Posts: 2 New Member
* 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.
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.
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Comments
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THat's a bugger @amyf798 about the deleting!
Ne'er mind ... I will have a go at recreating the post I had put up - great that you have much more info there now too 
Welcome to the club no-one really wants to join .... You are in the right spot for support and info on anything that you ask .... It sounds like your GP is really on the ball, so they are a keeper!
A specialist Breast Surgeon is always the way to go - and Dr French was my surgeon & he is lovely and a wonderful surgeon. He specialises in Breast Cancer surgery & prides himself on doing the best possible aesthetic outcome (ie your surgery site LOOKS good after healing.) He is the head of the Breast Cancer at Westmead & also an Associate Professor - so teaching other surgeons how to 'do it right' - I would definitely recommend him to you. You couldn't be in better hands, if you go with him - and he is also a Thyroid surgeon if needed (sometimes the 2 can go hand in hand.) I finished my 5 years with him last year. He also does his own ultrasound on you in his room as well, so he knows exactly what he is looking at (and doesn't just accept what others have written in their report) which is good. He did a fantastic job on me - nipple saving lumpectomy & moved some of my breast fat around at the same time, to fill in the hole, so did a mini 'recon' at the same time. My Oncologist now has to look twice to make sure she is looking at the correct breast, my recovery was so good. I am rural & travelled to Sydney to see him. You can read about him here:
https://drjamesfrench.com.au/about/
Write all those things you've put above & give him a copy so he can go thru them with you. (I always went in with a copy of questions that I would tick off on my own copy as he addressed each one.)
My own Invasive Lobular was totally missed (for how many years) with the mobile NSW BreastScreen bus (as it only has 2D Mammogram, not 3D Tomosynthesis .... so I now go to port Macquarie and see a specialist Breast Cancer Ultrasound lady - and make sure I get in & see her every year. Invasive lobular is particularly 'sneaky' as it doesn't 'present' as a lump, as do most BCs. Invasive Lobular shows more like strands & is more difficult to identify with a mammogram, so ultrasounds are usually recommended. Dense Breast Tissue makes it difficult for mammograms to pick up cancers, as the breast shows as 'white' as does the cancer - so 'white on white' almost makes it look invisible.
https://www.bcna.org.au/resource-hub/articles/breast-density-and-screening/
I am surprised you haven't had a biopsy on those areas of concern - as it is the definitive 'test' to see if there are cancer cells in any of those areas that you are concerned about. So you don't know which BC you actually have, at this point in time?
You've got a lot of family history and other medical conditions (the yellowing of eyes would be a major concern, I reckon!) - so your team will look at all of this when discussing your case.
Try not to 2nd guess everything & definitely stay away from Dr Google, as a lot of stuff on there is totally out of date & not relevant to your condition xx. Plus, it may scare the pants off you! Even searching for research, when you don't have an actual diagnosis yet may only confuse you. Rely on your team and your Breast Care Nurse - (he has his own breast care nurse) for answering any questions.
Take care, look after yourself, keep busy, doing things you love .... and all the best with your upcoming appointments xx2 -
@amyf798
Great advice given by @arpie.
Sorry to see you here!
Try not to let anger dominate your thoughts. Radiology is just one step in many to be taken to get a diagnosis. A biopsy, if needed, will be ordered by the Surgeon which will give a pathology report.
https://www.bcna.org.au/resource-hub/articles/breast-cancer-pathology/
The link above will give you an understanding of the pathology reports. During surgery further tissue will be sent off to pathology.
It's a landscape with lots of steps and changes along the way.
By your description, weight loss and yellowing of eyes, you certainly have a lot going on!
Sending a virtual hug
Take care
2 -
@arpie Thank you so much for taking the time to comment with such thoughtful words and resources.
At this stage the GP and General Surgeon are saying its evident that a cancer is present in my body, they are just trying to pin point which one.
The symptoms are worrying them as I have started to go downhill quickly but there is no actual mastitis infection present this time like all the other times.
The surgeon said I would need surgery to remove the troublesome duct regardless of malignancy or not as its clearly causing too many issues and making me sick several times per year.
But now with the additional symptoms he wants to make sure they have investigated deeper to make sure they aren't missing anything. As so many have mentioned, these little BC's like to hide in dense tissue like ours.
I have two children with Autism, so I am trying to stay strong and positive, but also trying to advocate really hard to find the source of the issue so we can get onto treatment asap for the best outcome.4
