Topic: Dense Breasts and History of Breast Cancer

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Dec 2, 2021 11:30AM

Posted on: Dec 2, 2021 11:30AM

macdebbie wrote:

I have dense breasts - Category C - Heterogeneously Dense - and was diagnosed with breast cancer in my right breast 7/29/21.

I had a lumpectomy and just finished 16 rounds of radiation. My tumor was small (3mm) and luckily no lymph node involvement, so no chemo. Because of the tumor size I also was unable to get Oncotype, so my recurrence numbers are a little murky, but they range between 3-5%, 5% being what my oncologist determined. I will see my MO in late Dec to start hormone blockers as my tumor was ER/PR+.

A huge part of this journey has been education. I recently learned that having "dense breasts" - either category C or D puts one in a higher than normal risk category. As does having had breast cancer already. I pulled my last mammo letter and it notes that I have heterogeneously dense breasts, and may be at high risk for breast cancer, and that dense breast tissue makes it harder to evaluate the results of a mammogram and may be assoc with a higher risk of breast cancer. It states that I should talk to my doctor about having additional screenings - US or MRI.

Never once has anyone told me any of this or talked to me about additional screenings. So I've done research on my own and found that the American College of Radiology in 2018 recommended annual surveillance MRI in women with dense breasts and with a personal history of breast cancer. That's me.

So I called my breast surgeon's office, and a message was relayed to me from the PA by an admin person that that's just a standard statement they put on mammo reports, and it only applies to women with Category D, extremely dense breasts. I am kind of floored that this is their response.

I'm guessing (maybe wrongly) that my whole breast radiation probably killed off anything in my cancerous breast, but what about the other breast? Only a 3D mammo has been done. Shouldn't they at the very least do an Ultrasound, or now, given the recommendations by the American College do an MRI? The breast surgeon's office told me that since I had a 3D mammo, that is sufficient.

I don't know what to do here. There are only two doctor groups here. Each group is affiliated with one of two large hospitals. My group that my breast surgeon doesn't belong to does not take my insurance, so I would have to pay out of pocket for any consult or additional testing. I'm afraid every doctor - breast surgeons, oncologists, etc. in the group I am with will tell me the same thing.

I feel like I am being let down here. Am I wrong in thinking that I should be having imaging other than just mammos? I know the next thing they will tell me is there are too many false positives leading to unnecessary biopsies. Well that may be, but I'd rather that than go through breast cancer again, and maybe a worse stage, needing chemo, etc., or have something that has progressed to METS.

Can anyone guide me here?

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Dec 2, 2021 04:15PM - edited Dec 3, 2021 07:27AM by mfk

Hi - I have dense breast tissue as well and have been called back for follow-up mammograms from time to time over the past five years or so. They've been monitoring the calcifications I received similar letters mentioning that ultrasound or MRI could be appropriate depending on individual risk factors. This year, in addition to follow-up screenings on the left breast, they added an ultrasound, which definitely caught my attention because I knew they were digging a little deeper. That visit led to the biopsy, which led to the DCIS diagnosis, which led to surgery earlier this week. Prior to surgery, I had an MRI on both breasts, which showed nothing unusual in the right breast. I don't know what the screening process will look like after radiation, because I'm a little behind you in the process. As far as what happened in the past, my sense is that they were watching it, caught it at just the right time and doing anything earlier would have been overtreatment. Maybe that's naiveté, and I may come to second guess that assessment in the future, but that's where I stand at this point.

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Dec 2, 2021 04:35PM beesie.is.out-of-office wrote:

Breast density is really poorly explained by doctors and even by most websites about breast density.

Category C density is actually quite normal for your age. And as you can see from this graph, breast density tends to decline with age. Of greatest concern are those who continue to have Category D density post-menopausally. This is why MRIs are only routinely done on those with the highest level of density - otherwise, MRIs would be necessary for 50% of all women.




The other thing to understand is that when you see risk figures related to breast density, usually the increase in risk quoted is a comparison between those with the lowest density vs. those with the highest density. The two middle categories are more normal and are pretty much baked into the "average" risk figures. Therefore while risk may be somewhat increased for those with heterogeneously dense breasts, the increase against average risk would not be that great.

Having said that, with your history of breast cancer and your Cat. C breast density, a reasonable request would be to supplement your mammogram with an ultrasound. That is usually the approach taken when MRIs are not available.

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Dec 2, 2021 04:36PM salamandra wrote:

Hi Macdebbie,

I have some ideas but I don't have enough expertise to call it guidance.

I would consider paying OOP for a second opinion from a breast center that is more prestigious than your local center and a doctor who is more senior/credentialed. If they can give you the opinion that additional screening is recommended, then I would take that back to your local center and discuss it with your doc. If your doc is still reluctant, the magic words I have read about are something like, "Can you please note it in my file that despite the recommendation for _____ screening from Dr. Abc at Medical Center XYZ, and against the recommendations from the American College of Radiology, you are declining to prescribe it for me?" and waiting to be shown that it's added to the doctors' notes, and asking for a copy. If it get that far, then I would take the recommendation and the file to my regular doctor/ob (even if they're not an oncologist) and ask them to order the screening. AFAIK, any doctor can order any test.

I don't know that that will work, but I think it has a decent shot.

FWIW, I am a survivor without dense breasts, but due to younger age and family history, my doctor agreed to let me alternate between MRIs and mammos every 6 months and my insurance is covering it. The MRI has already led to one biopsy for a benign finding - that false positive rearing its ugly head. It really was wrenching and stressful, and I second guessed my request for that extra level of screening. But neither the radiation oncologist nor my regular oncologist said a single thing to imply that I was somehow over the top or wasting money and resources.

---

Another thing you might try first is having a male come with you and speak to your doctor. It doesn't have to be a husband. A dad, brother, boyfriend, or even male friend, make a difference: https://aleteia.org/2018/06/07/why-you-should-brin...

Bleh.

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Good luck!

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/18/2018 Lumpectomy; Lymph node removal Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/3/2018 Whole breast: Breast Hormonal Therapy 12/19/2019 Fareston (toremifene)
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Dec 2, 2021 05:07PM macdebbie wrote:

Beesie - thanks for weighing in. I did read that Category C dense breasts are quite common, but it is the combination of having dense breasts and having had cancer that is weighing on my and looking at the sensitivity rates - mammogram alone - 31-33%, MRI alone 87-96%, and mammogram and ultrasound 44-48%.

The ACR recommendations are for either breast density category of C or D to include an annual MRI if the patient has a personal history of breast cancer. The American Cancer Society recommends MRI screening in "high risk" women regardless of breast density. I would assume having had breast cancer puts me in the "high risk" category?

At the very least I would like an ultrasound as supplement to my mammograms. However, I don't understand the reluctance of doctors to prescribe and MRI when it could save lives and when it is warranted. I am not just a woman with dense breasts. They always cite "cost" but why are docs so concerned with cost. They aren't paying for it, I am, or in this case my insurance is. So why do they care? I can only guess there must be some disincentive to order MRIs or some tie with the insurance companies, but I feel like they should care about me more than they care about the insurance companies.

Unfortunately my breast density has not improved. I am 64 now and my breasts are just as dense as they were in my 40s and 50s.

Salamandra - Thx for your thoughts. It's very hard for me to get a second opinion from a prestigious cancer center. Unfortunately Telehealth visits are disallowed and I don't want to be traveling with COVID. The best I could do is go to the other hospital group for a consult with another breast surgeon. That hospital is a teaching hospital and is nationally ranked in Cancer. Certainly not on the level of a Dana Farber which I would have gone to back home, or a Johns Hopkins though.

The breast surgeon I went to is considered the best in this area, probably the entire state. I felt very comfortable with her and her level of expertise but I do not agree with her here. I'd much prefer to be cautious. And if I have to go through a few false positive biopsies so be it. Better than getting cancer again.

I have heard of the "please make a note in my file" play, and if push comes to shove I will use it, but I don't want to create tension in this relationship as she is who I would want to go to if I need breast surgery ever again, God forbid.

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Dec 2, 2021 05:53PM minustwo wrote:

Debbie - Have you talked to your GYN? That's who wrote my orders for an ultrasound.

Or I would suggest a consult with an oncologist. Yes, I see that maybe you didn't have any other treatment, but surgeons cut. That's what they do then most often they're through. Oncologists look at the entire panorama of cancer. I met with one before my mastectomy even though everyone was sure I wouldn't need chemo (which I didn't that time) because I wanted a 'driver of the bus' for whatever happened.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Dec 2, 2021 06:04PM Carlsoda wrote:

Hi macdebbie, I am sorry you are going through this. But I am glad you are asking questions. I also have dense breasts and I’ve had breast cancer in the same breast twice now and the 3D mammo didn’t catch it either time. Because of this we will be doing both 3D mammo and a MRI 6 months apart moving forward. I would hope your MO would be willing to do this for you too. So keep fighting for it!

Age: 51 @ diagnosis. Oncotype Result: 16 Dx 4/26/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/4/2016 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Radiation Therapy 6/20/2016 Whole breast: Breast Hormonal Therapy 8/10/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/31/2021, IDC, Left, 1cm, Stage IA, Grade 3, ER+/PR+, HER2-, Surgery 5/5/2021 Lymph node removal: Underarm/Axillary; Mastectomy: Left Chemotherapy 6/3/2021 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 9/6/2021 Femara (letrozole) Hormonal Therapy 10/3/2021 Zoladex (goserelin)
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Dec 2, 2021 07:00PM harley07 wrote:

@macdebbie - I'm sorry you are going through this. An excellent point was made above about consulting with an oncologist to review the overall picture. I'm also 64 with a similar diagnosis, strong family history and a genetic mutation. My MO has recommended alternating a mammogram and MRI every 6 months because of the genetic issue. I have declined for my own reasons but believe everyone who is high risk should be allowed an MRI if they wish.

A few weeks ago, I mentioned to my BS that the MO recommended an MRI. The BS orders the mammogram, but the MO would order the MRI. The two doctors practice in different hospital systems although the BS can do breast surgery in both systems. The BS doesn't believe an MRI would be helpful in my case but said her hospital system believes a Mammo + ultrasound is more useful. I did have both the mammo and u/s last summer because of a suspicious skin lesion on the left and skin thickening/swellingon the right - both of which were suspicious for IBC but turned out to be nothing. In the future, I don't plan to do a u/s unless there is a suspicious finding. I think it's interesting to note that there are different schools of thought between and among doctors and hospital systems. And yes, there may be some financial incentive or disincentive for which screenings are recommended over and above a mammogram.

Best of luck and keep us updated. I'll be thinking of you.

RAD51D mutation Surgery 11/5/2020 Lumpectomy; Lumpectomy (Right) Dx 11/10/2020, IDC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 11/20/2020 Lumpectomy; Lumpectomy (Right); Lymph node removal Radiation Therapy 1/8/2021 Hormonal Therapy 2/8/2021 Arimidex (anastrozole)
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Dec 2, 2021 08:22PM bcincolorado wrote:

I have very dense tissues and the breast center where I do my mamos actually after the 3D mamo said I needed it and did it automatically. No doctor had to request other than the radiologist who read it said I needed it. They do read it when I am there and report before I leave because of my history. They do it with all the people who come in for testing there. It is affiliated with a local university hospital system though and that might make a difference as well. Best wishes.

Dx 8/2009, IDC, Left, 5cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 1/1/2010 Mastectomy (Left): Nipple Sparing; Reconstruction (Left): Tissue Expander Surgery 1/7/2010 Lumpectomy; Lumpectomy (Left); Lymph node removal; Lymph node removal (Left) Hormonal Therapy 1/15/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/30/2016 Femara (letrozole) Hormonal Therapy 1/1/2020
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Dec 2, 2021 08:44PM kbl wrote:

I agree that you should see a gynecologist. That’s who always made the script for a diagnostic mammogram, followed by ultrasound because of dense breasts. It wouldn’t have helped me because I have lobular mets, and they’ve never found the cancer in my breasts, but that’s who asked for it for me.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib)
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Dec 2, 2021 09:27PM beesie.is.out-of-office wrote:

macdebbie, I do understand that your concern is the combination of having a personal history of breast cancer + dense breasts. I was simply trying to provide some more information about your level of breast density, which is average for your age. With Cat 3 density, I think your higher risk comes from having been previously diagnosed - and I personally believe that alone should get you supplemental screening. I think all women previously diagnosed, who have not have had a BMX, should be considered "high risk" and receive high risk screening. Unfortunately that's not how it generally works out, however.

What is your source for this data? "looking at the sensitivity rates - mammogram alone - 31-33%, MRI alone 87-96%, and mammogram and ultrasound 44-48%."

There may be one or two studies with those results, but the studies and meta-analyses I've looked at suggest that for women with dense breasts, mammograms alone have sensitivity of ~45%-65%, versus about 80%-90% for the combination of mammograms and ultrasounds.

"The researchers found that adding ultrasound to mammography increased cancer detection by an absolute rate of 29% -- rising from 53% with mammography alone to 82% with both screenings." RSNA: Ultrasound, MRI Helpful Aids for Dense Breasts https://www.medpagetoday.com/meetingcoverage/rsna/17318

"Overall, the sensitivity of mammography for the detection of breast cancer is 85%; however, in women with dense breast tissue, the sensitivity of mammography is reduced to 47.8–64.4." The Role of Ultrasound in Screening Dense Breasts—A Review of the Literature and Practical Solutions for Implementation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5872003/

I recall seeing a study a while back that compared the efficacy of adding an MRI to a mammogram versus adding an ultrasound to a mammogram. As I recall, adding the MRI did increase the cancer detection rate, although the difference was surprisingly small and the rate of false positives was higher. I will dig around to see if I can find that study.

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