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Dense Breasts

Re: Dense Breasts

Posted by flowerlover2 on Dec 3, 2019 9:38 am

I have Heterogenously dense breasts, live in BC and had a single mastectomy in January. Before my surgery the surgeon suggested a MRI in December to double check the other side. It was suggested to do another MRI 6 months later as it looked like hormonal issues on the other side, I choose the wait and see on the unaffected side. Had the MRI in August and the enhancement they saw has decreased. Which made me ask if I could do ultrasound rather than MRI. My dr said it is not the protocol to do ultrasound before mammogram and she didnt think that they would do it.  The surgeon and dr still want me to do yearly MRI's. My dr said possibly the protocol will change with the media attention and publicity of dense breasts.

ashcon‍ what is the reasoning for needing to know the breast density, other than cancer is harder to detect, it's not going to help detect it by knowing the breast density? Ultrasound would show more.

Glad to hear that more and more provinces are giving the information!

Re: Dense Breasts

Posted by ashcon on Dec 3, 2019 4:13 pm

So good to hear your personal updates.  As we know, having dense breast tissue continues to be a risk factor even after we've gone through one (or more) rounds of BC and treatment!  (For those who have any breast(s) remaining.  Which is not me.  Yes, I have lost my "female figure", but I don't have to have anymore mammograms - woo hoo!)

Mare2062‍  Good luck with your Dr's appt tomorrow.  I hope you do get some traction on changing some minds.  I took a handful of  the brochures that I printed off the Dense Breast Canada website and dropped them in the waiting rooms of my GPs office, my surgeon's office, my cancer centre.  Women have been picking them up. I think they've been self-educating and learning more about this, and (thus) are asking their doctors about this issue.  The more that doctors hear women asking about this, the more it can't be ignored.  
You too can access the brochure (in ENG and FR) at the bottom of the Dense Breast Canada website under the heading "Protect Yourself".  I've attached the English version here in case you want to download from here.

Picasso’s mannequin‍  You are right. They say that an earlier diagnosis tends to result in less aggressive treatment.  Knowing that I had dense breast tissue, and learning of the increased risk of developing breast cancer as a result (and it also being difficult to see), I think I would have elected for my double mastectomy anyway.  I felt like my "ladies" were ticking time bombs!  That was my perspective on my breasts.  I recognize that many women don't see it that way. 

dmarie‍  I'm glad you have an amazing GP who seems to understand the importance of additional screening for dense-breasted women.  Manitoba seems to be one of last provinces to step up to breast density notification, and the information that is included in a woman's mammogram results that is sent to her doctor is insufficient.  Essjay‍ is in Manitoba, has dense breasts and can speak more to this.

flowerlover2‍  I'm glad to hear the 'enhancement' they saw in  the MRI done in January decreased by August. 
To answer your question about the purpose of continuing with mammograms, aside from learning what your breast density is, I neglected to mention these other salient point as taken from the Dense Breasts website:
 Mammograms are proven to reduce breast cancer deaths. Mammograms can reliably detect suspicious calcifications. 

I'm wondering why you would prefer to have US over MRI?  According the Dense Breasts Canada website:
MRI detects the most breast cancers of any imaging. It is an effective screening tool for women with dense breasts and detects 18 or more additional cancers per 1000 women. No radiation is involved.  It can result in more false positives, so is not used as a screening tool, but It is currently used along with mammography for high-risk patients (BRCA gene, strong family history, or history of radiation to chest). 
Attached files
---- "Nothing ever becomes real till it is experienced." ----

Re: Dense Breasts

Posted by flowerlover2 on Dec 3, 2019 6:00 pm

ashcon‍ As the MRI contrast dye isn't great for a person I thought maybe every other year I could do it and then US when I didnt.  The false positive concerns me too. Also being the fact we don't have a breast MRI in my town. I had been flying to where I had surgery and MRI. Possibly I can go to Alberta which is 2 1/2hr drive to have the MRI next year.

thanks for your work you do here!

Re: Dense Breasts

Posted by Essjay on Dec 4, 2019 7:46 am

Good discussion!

I'm sat here listening to the radio waiting for the article on dense breasts, and whether MRIs save lives in women with dense breasts...

I just had my first follow up mammogram. I have ’extremely dense breasts’, and my tumour wasn't easily visible last year on my diagnostic mammogram despite a palpable lump (I was pre-screening age). I discussed my situation with my oncologist asking why mammograms are the standard monitoring for women like me. I was told that in Manitoba, MRIs are only done on women with the BRCA gene, and that they miss calcifications which are often seen before cancer. Ultrasound is not done routinely, only to verify what has been seen on a scan. In my case, now that they have 2 mammograms, they have something to compare with, and will hopefully spot changes.

My cancer is less likely to return locally, rather than at a distant location, but I remain at risk from a new primary in either breast. 

I'm going with the flow because no one is budging on protocol here, but I know I will be very angry if I do find another tumour myself! 

I read that in UK they have lowered the age for screening to start to 47. One of the reasons is to establish if a woman does have dense breasts...
Triple Negative Breast Cancer survivor since July 2018

Re: Dense Breasts

Posted by Picasso’s mannequin on Dec 4, 2019 2:15 pm

And of course, it is a song and a dance and a long period of wait just to see if you have those genes. Does Anyone know a private company to do this? I havnt been tested because no history, but there weren’t many women in my family, other than mom, sister, nieces who should know....no aunties. 

Re: Dense Breasts

Posted by Mare2062 on Dec 5, 2019 7:00 am

I dont know how to tag someone here. Writing to the lady from BC and the beginning of the posts (Nana...). I too am from BC. I wish they would suggest MRI for me. My breasts are dense. When I had cancer they did do an MRI and found 2 additional tumours that weren't picked up with mammogram or ultrasound. 

I'm still waiting for results of mammogram I had 3 days ago. Aaah! Nervous for some reason. I've had a few tests lately and they keep finding stuff all over.

I know MRI's are expensive  but if they save lives

Re: Dense Breasts

Posted by Essjay on Dec 5, 2019 7:47 am

Picasso’s mannequin‍ when I was put forward for genetic testing, I wasn't sure if I'd be accepted, so I looked around at private companies. 23 and me do genetic testing for a wide suite of genes, which seemed an option for me. I was accepted for testing despite a lack of family history with breast cancer because I was diagnosed before the age of 50, had triple negative breast cancer, and a multifocal tumour. I was negative for all known hereditary mutations associated with cancer, which is a relief for our family...

I did listen to the article on CBC about he latest research on dense breasts and MRI’s. The study was done in the Netherlands, and it will follow women to see if they can answer the question as to whether MRIs save lives. The study did identify that women having MRIS were more likely to have a biopsy or procedure to remove a mass, and that many of these were benign or may not have gone on to become cancer - this is the main reason why jurisdictions are reluctant to use the procedure, in addition to cost. The recommendation that women with the highest classification of density should have MRIs was interesting to me. The study noted that density is linked with increased incidence of breast cancer (for reasons they don't understand yet), so there's the double whammy - more chance of cancer, and they can't see it!
Triple Negative Breast Cancer survivor since July 2018

Re: Dense Breasts

Posted by ACH2015 on Dec 5, 2019 8:34 am

Hi Picasso’s mannequin‍ and Essjay‍ 

I saw your posts and remembered reading about the potential shortfalls of genetic tests with 23 and Me. I'll share both a quote and the article with you:

Important limitations remain for breast cancer risk testing

"While exciting and promising, the product developed by 23andMe, and breast cancer genetic testing as a whole, are still limited tools. They are not currently comprehensive enough to provide an accurate assessment of a person’s entire genetic risk for breast cancer.

23andMe’s test is limited in scope. It tests for just three mutations called single-nucleotide polymorphisms (SNPs): two in BRCA1 and one in BRCA2. These three SNPs are the most common mutations associated with an increased risk of breast cancer for individuals of Ashkenazi Jewish descent, where they occur in 1 in 40 individuals. These mutations are much less common for other ethnicities. There are nearly 200 more SNPs in tens of genes other than BRCA1 and BRCA2 that have been linked to altered breast cancer risk (Figure 2). 75 of these mutations were just linked to breast cancer risk in the past year. Additionally, there are numerous mutations in several genes for which scientists simply do not know the effect on breast cancer risk: these mutations are dubbed “variants of unknown significance (VUS)”. For example, there have been thousands of mutations identified in BRCA1 alone, and many are labeled as VUS. As such, it is possible for an individual who tests negative for the three SNPs chosen by 23andMe to have another mutation that increases breast cancer risk that was either not included in the test or is not yet well understood.

23andMe has also been criticized for providing data to consumers that may not be accurate. The company allows consumers to download additional data that are not verified, and consumers often use third-party websites to analyze these data to uncover more mutations. A recent study highlighted the abundance of false-positives in the extra data, meaning these data show the presence of mutations that do not actually exist in a person’s DNA. Confirming mutations with additional testing at the doctor’s office is critically important.

Using genetics to fight cancer is the article and link I am sharing here. I think the critical issue is this vendor's test does not appear to give the client a "complete picture" and may lead to a false sense of security due to the "limited test scope" as stated in the article".

My suggestion toward obtaining genetic testing required by your oncologist: If you don't qualify for funded testing that is required or suggested, ask them to provide you with an accredited service (they recommend) that will give both you and your oncologist the required and most diverse test results for the most complete picture in your situation.

I thought this information was important to share.