Hi all. Since diagnosis in December of invasive ductal carcinoma Her2 positive and estrogen and progesterone positive. Found only in right breast. i was told chemo lumpectomy. Now all of a sudden surgeon recomends masectomy due to dense breasts. This was suprising. Can anyone advise of what ongoing treatment/ survelince might look like and why. As i asked why masectomy she said concerned about MRI dye for rest of my life. But wont i need MRI for the left side? Due to the density. What about with lumectomy wont it be the same surveillance anyway. Also do people habe radiation after masectomy too? Would appreciate if anyone has any ideas 😊

Hi @Megs04 I too had dense breasts. My surgeon would have been OK with annual MRIs to monitor cellular changes however, in my case, the density and busyness of breast tissue meant my DCIS was "occult on imaging" (that is, none of it showed up on MRI, even though we knew of at least some of the DCIS following biopsies. I had my mastectomy 11 days ago and the histology report shows my breast was riddled with DCIS irrespective of the no-show on MRI. Now, I believe this to be relatively uncommon and MRI is generally very helpful in identifying cancerous cells but I think it pays to press your breast surgeon on the nature of the precise risk with MRI. Wishing you really good luck.

I wish I'd had an MRI when I was diagnosed. It would have made the next six months a lot less agonised.

Thank you megs04, primer and arpie, it is very beneficial hearing your views about dense breast tissue and mastectomy. The breast surgeon was against my having a mastectomy in the first place, her reason being that my tumour was small (11mm) and no lymph nodes were involved. I ended up having a lumpectomy, however I am thinking of having a mastectomy later in the year after finishing Herceptin. I constantly worry that due to the fact that I have dense breast tissue, I may have another larger tumour which may go undetected.

My understanding also is that MRIs are only covered by medicare if under 50 also. So it may be expensive for you long term for regular screening.This was an interesting link I thought.https://www.mayoclinic.org/tests-procedures/mammogram/in-depth/dense-breast-tissue/art-20123968I guess the concern also with mri is false positive areas which will result in need for additional tests. Did the breast surgeon give in depth detail why they suggested the change. Was it due to discussion in the team?I found my lump 5 weeks after a clear mammogram..i was very fortunate it was located near the skin so it could be felt. Biopsy was grade 2. Final pathology was grade 3. My outcomes may have been very different if it was deep in the breast. My breast surgeon reviewed my mammogram and stated even though we knew exactly where the tumor was it was invisible. Enough for me. I didn't want to live in fear of recurrence or new cancer growing without detection. I also live 500k away from closest breast mri machine so doing this for life wasn't really practicle for me.I will always miss my breasts but have never regretted my decision.

Hi MegsI was diagnosed at stage 4 at the outset and presumably cancer had been missed in previous mammograms and ultrasounds due to my having dense breasts - I was having mammograms and ultrasound every two years and had a physical exam by GP 1 year before diagnosis. I had multiple tumours in my left breast, the largest being about 9cm long, so beats me why this wasn't picked up at last screen or by GP. My tumour was only moderately aggressive, so have trouble believing tumour could have occurred, grown to this size and spread to bone in under two years. But unfortunately, I will never know.I thought the debate at the moment is around offering women with dense breasts MRI's as there is less chance of cancer being missed primarily due to the expensive nature of MRIs. I wasn't eligible for Medicare rebates for MRI (however with the benefit of hindsight, I would have paid for an MRI if it had have been recommended), but you definitely would be eligible for a rebate now, as they have recently changed rules so that if you have had breast cancer already you are eligible.I think the advice you have been given is more likely to be based on your pathology and chance of recurrence rather than risk associated with MRI dye. They use gadolinium as the dye for MRIs and they have recently found that your body can retain small amounts of gadolinium in the brain for many years after an MRI. However, they do not know if retaining these small amounts of gadolinium is bad for you or not. Personally, I would wear the risk of the gadolinium over having a mastectomy, if I hadn't have been diagnosed with breast cancer previously. Like @primek, if I was in your situation already having a cancer diagnosis, I would probably opt for a mammogram so that the chance of recurrence is lower. Everyone ways up risk differently though, so it is important to make up your own mind based on a full understanding of risks and benefits.I think you need to talk to your surgeon to better understand the risks and benefits.Good luck with your decision.

Dense breasts/mastectomy/ongoing survei

PV123
Member
6 years ago
Keeping positive1 - We do need better screening and more information about breast density.

Ahnn - Thank you for sharing your experience. I am planning to have a double mastectomy later in the year. Did you have anyone at home helping you with daily tasks. My husband is away all day and cannot stay home to assist me. Were you able to manage everything yourself and how long was your recovery?
Ahnn
Member
6 years ago
I was only advised I had dense breasts when I was recalled for further testing last year. I've been having yearly mammograms since age 50 and diagnosed stage 3 DCIS in july 2019. After lumpectomy pathology showed invasive tumour 8 mm in left breast. Lymph nodes clear. MRI prior to lumpectomy showed 5mm lesion in other breast which turned out to be extensive DCIS. With those results i decided with surgeon for bilateral mastectomy. Only the MRI had picked up an issue. I didn't know i had dense breasts until then. My sister was aware and has ultrasounds every year as well as mammograms - all clear so far
Keeping_positiv
Member
6 years ago
I started having 2 yearly mammograms with Breast Screen around 2005 when I turned 50. I asked about the accuracy of detention of breast cancer with the mammograms and was told then that some with dense breasts are not detected through the 2D that is available, but the 2D is all the government give funding for!

What disappoints me is that nothing much has changed regarding the funding. No point just giving people with dense breasts the standard 2D mammograms and telling them to be vigilant and to keep up their two yearly mammograms.

Trying to keep positive, but sometimes we just have to push for better screening for all!

P.S. I was told I had dense breasts, but only because I asked some pointed questions about the accuracy of the mammograms.
arpie
Member
6 years ago
Yep - @PV123 - I had absolutely no family history of ANY cancer, let alone Breast Cancer, and knew I had 'lumpy breasts' but I didn't know that it increased my risk of a late diagnosis as well - which in my book, is medical negligence on behalf of Breast Screen Australia, not to advise their clients that they need secondary testing as mammograms alone are useless on Dense Breasts!

Check out this thread as well ....
https://onlinenetwork.bcna.org.au/discussion/21944/dense-breast-info-which-usa-states-advise-their-women#latest
PV123
Member
6 years ago
Thanks arpie. This website really spells it out very clearly.
I didn’t know this: “Having dense breasts is a greater risk factor than having a family history”.
arpie
Member
6 years ago
Another site with good info ...

https://densebreastscanada.ca/?fbclid=IwAR2goZ7S8FKa7t8vfa2OMNFcv8M_IxQ1G8njfx2CD_6pPjSrLdDLX-JE_ud
PV123
Member
6 years ago
Thank you Sandes for sharing your experience.
arpie, I agree that we have a right to be informed about breast density. It changes what tests we do and how frequently we get tested.
arpie
Member
6 years ago
Sadly, @Sandes - if you'd been informed earlier that you had dense breast tissue (which is quite obvious from the very first scan), your tumours may well have been picked up a lot earlier. :(

We are all working on getting this as compulsory notification by BreastScreen Australia!
Sandes
Member
6 years ago
I had a grade 3 invasive ductal carcinoma HER2+/ hormone negative, 5cm and lympho nodes involved on the left breast. I always had mammogram + iultrasound every 2 years due to lumpy breasts, but even then the cancer grew very fast (detected 1 and 1/2 year after the last mammogram/ultra). I decided to remove both breasts as very hard to monitor the dense breasts.
PV123
Member
6 years ago
Thank you megs04, primer and arpie, it is very beneficial hearing your views about dense breast tissue and mastectomy.

The breast surgeon was against my having a mastectomy in the first place, her reason being that my tumour was small (11mm) and no lymph nodes were involved. I ended up having a lumpectomy, however I am thinking of having a mastectomy later in the year after finishing Herceptin. I constantly worry that due to the fact that I have dense breast tissue, I may have another larger tumour which may go undetected.