There is no warning currently given to patients having dense breast tissue, that makes it difficult for mammograms to detect cancers in women or men presenting with such. Many Utah women having dense breast tissue were not aware they had that, nor were they made aware it inhibited their ability to get an accurate mammogram reading. For some, the news they have breast cancer came too late to receive early treatment due to lack of early detection.

"Ever since her sister's life was cut short by breast cancer in 2008, Cathie Skene has been on the lookout for the disease in herself, vowing to ward it off early if it were to strike.

So when Skene began to suspect she may have a cancerous mass late last year after she could feel something abnormal, she insisted on being tested with an ultrasound even after a mammogram result indicated she was in the clear.

"The mammogram said, 'You have dense breast tissue, but you're fine. … Just come back next year for your screening,'" Skene said. "So I had to kind of fight with my doctors. I had to go to two different doctors to get an ultrasound."

That instinct, it turns out, served her well. On Nov. 6, 2017, Skene's mammogram indicated she was cancer-free. By Dec. 11, following an ultrasound and biopsy, she was formally diagnosed with breast cancer.

"Had I not persisted, I'd probably be about a year down the road, and I'd probably be a lot worse off than I am now," the Draper woman said. "How many people do that? Would I have done that if i hadn't (had) a personal experience with a loss from breast cancer? Probably not.""

That happened with me. I went last February for a routine mammogram with ultrasound. Everything came back clear. Then as a fluke, I went again this past November because of a workplace benefit I wanted to use before it expired in the current calendar year to get another mammogram w/ultrasound. That is when my breast cancer was detected. Two mammos and ultrasounds in the same year. The first was negative. The second came back positive. I have dense breast tissue. The cancer was really there all along - it just wasn't detected the first time around. :(

Early detection saves lives. Anyone debating whether or not to get your annual mammogram, just do it please. If you have dense breast tissue like I do, you can request an ultrasound in coordination with the mammogram. Most insurances will cover that nowadays like they do the mammos.

https://www.deseretnews.com/article/900009515/breast-cancer-survivors-push-for-bill-warning-about-mammograms-screening-limitations.html

This is a compelling reading.

If, like myself, you still have questions, I learned a lot here:

https://www.cancer.org/cancer/breast-cancer/screening-tests-and-early-detection/mammograms/breast-density-and-your-mammogram-report.html

Plus there are boobie pics!

I am surprised there aren't more warnings given by Utah doctors to their patients.

Do Utah doctors give a sh*t? Or what?

In New York, Connecticut, Texas and Virginia, such warnings have been mandatory since as early as 2012.

"“Providing information like this enables women and their physicians to be proactive about their own healthcare,” says Jean Weigert, MD, FACR, director of women’s imaging with the Hospital of Central Connecticut. “But you need data to determine if providing this information is helpful.”

It is common knowledge within the breast imaging community that dense breast tissue is one factor determining whether a woman is at high risk of having undetected breast cancer. Dense breast tissue contains less fat and more connective tissue, which appears white on a mammogram. Cancer also appears white on a mammogram, and thus tumors are often hidden behind the dense tissue. However, dense tissue is not the only factor when labeling a woman at high risk of breast cancer.

“Breast density is just one of the things women need to know,” says Barbara Monsees, MD, FACR, chief of breast imaging at Washington University School of Medicine in St Louis and chair of the ACR’s Breast Imaging Commission. “They need to talk to their physicians about the other risk factors, such as family history. They need to put dense breast tissue into context with the other risk factors before coming to any conclusions.”"

80% of new breast cancer diagnoses today have no family history associated with them.

Men are increasingly at risk as well.

Know your body.Org

http://www.radiologytoday.net/archive/rt0812p30.shtml



Edited 1 time(s). Last edit at 02/06/2018 11:02AM by Amyjo.

I am Cathie Skene's sister, and I am having the same problem trying to get better testing for my dense breast as well. I was told in 2012 that because of my dense breast and my family history, that I should have a MRI every year, it was even in the report given to my doctor, but I have not had one since. My doctor would not write the order. You believe the test and the results. That as you can see can be a big mistake sometimes.
Still working on it and know I have a new doctor.

I am so proud of my sister and all she has gone through and done to help get the word out, but it should not have to be that way. You would think insurance company's would want to pay for more testing them to have to pay for all the cost that come with breast cancer and that doctor's cared more for their patience's. I hope this brings more awareness if nothing else.

So glad she pushed and that things turned out better than it would have.

Mine was first caught with a mammogram combined with an ultrasound. The biopsy followed.

Following the biopsy with diagnosis came my first MRI.

Now as a breast cancer patient I'm going to need the MRI annually as part of my checkup.

New York is more pro-active it seems. It pushes women to get screened through state initiatives. Insurance covers ultrasounds about as easily as it does the mammogram.

With dense breast tissue it elevates it for the insurance companies to cover the cost of screenings.

MRI's are the most comprehensive, as you've learned. Once my cancer was detected, the MRI was used to determine if they might have missed it elsewhere in either breast.

Thanks for sharing. It's a difficult topic, but one that needs more info and more publicity. Hope Utah passes that bill! For ourselves, our mothers, and our daughters.

Does your state have a health care advocacy office as a go-between between yourself, your insurance, and/or your physician?

With dense breast tissue you should be able to get the MRI with or without the cancer diagnosis.

I could have had the MRI last fall before being diagnosed with breast cancer, based on my history of dense breast tissue. When I learned it uses the IV with contrast dye I chickened out (I'm phobic of needles.)

Now I'm just going to need to grin and bear it going forward. Small price to pay for peace of mind.

Doctors should not be basing their recommendations on anything other than your best interest. It shouldn't matter WHAT state a woman lives in. States should be uniform in respect to this.

In CT there is a law, due to a former governor who was Dx-ed with BC, that if a woman has dense breast tissue, their insurance company cannot be denied an MRI, which does much better than mammos when it comes to screening.

https://www.cga.ct.gov/2016/rpt/2016-R-0201.htm



Edited 1 time(s). Last edit at 02/06/2018 12:05PM by angela.

I learned that first hand.

MRI is the best tool doctors have to detect it upfront, especially for women with dense breast tissue.

That's why I had stage II instead of stage I since it had a chance to spread to the lymph nodes during those years. I got scanned regularly and was told I was fine to go. No one told me I had extremely dense areas which hid the disease. They knew it but didn't tell me when an MRI or ultra sound could have saved me so much trouble and heartache.

California eventually passed a law that patients with dense tissue must be told. But the cancer association, doctors, and other women's health groups opposed it. My radiation doctor admitted openly that she didn't want the law to pass "Because then we'd be stuck with giving patients bad news. We'd never get our other work done."

I lost so much respect for health care workers over this issue!

Everywhere this law passes, many lives are saved yearly.



Edited 1 time(s). Last edit at 02/06/2018 12:13PM by Cheryl.

"Early detection saves lives."

I guess the statistics bear that out, but it is certainly not always the case. I'm living (dying) proof of that.

I always had my regular mammograms and was never told I had dense breasts. But none of it mattered for me. I fainted during a mammogram in January 2011. The technician squeezed me so hard, I mumbled I was going to pass out, enabling her to release me from the machine and catch me. I've never fainted before or since.

I have no idea if this incident caused some type of inflammation in my breast, but I was diagnosed a year later with Stage 0 non-invasive cancer in that breast.

Because I had non-invasive cancer in more than one area of the breast, I had to have a mastectomy. I chose a double mastectomy.

Final pathology unfortunately showed I was Stage 1A, Triple Negative, with an invasion of 3mm (half the width of a pencil eraser). I was told (at a cancer hospital ranked by many as the best in the U.S.) that I didn't need chemo and had only a 3% chance of recurrence, which would decline steadily over time. Second and third opinions confirmed this.

Three and a half years later, I found a lump under my arm. I'd been going religiously to the survivor's program at the hospital, which meant an oncologist or a nurse felt under my arm every 6 months. Since I was 1A, I was told -- no ultrasound, no MRI, no CT Scan, no Pet Scan was needed. The standard of care for 1A was to feel under my arms every six months -- nothing more.

Of course, the lump was a major recurrence in my nodes. After axilla surgery, I was found to be Stage 3C, with 15 positive nodes, plus inoperable positive nodes in my collar bone area. The situation obviously had been going on for months or years without being detected by physical exam. When I asked the oncologist how long it had been going on, she said, "It's impossible to tell". Right.

Anyway, months of intense chemo and radiation followed with the intent of treating me to a cure.

It didn't work. Last June a PET Scan showed cancer in my lungs and bones. I'm now Stage 4 incurable and struggling to stay alive as long as possible with oral chemo.

To quote my surgeon at the famous cancer hospital, "Oh what a sad tale you have to tell". .

So, while I agree with the push to have ultrasounds as routine care for those with dense breasts, I'd also like to see the American Society of Clinical Oncologists and the insurance industry change the standard of care for 1As, which is essentially to do nothing. By the time I found the lump, it was simply too late for me.

I have very little confidence in the idea that touching lymph node areas proves anything. My lymph nodes seemed fine from the outside and also when my surgeon removed four of them and looked at them carefully in her hand. She told me they were not cancerous, but the lab told a different story a few days later. The only way to diagnose cancer in nodes is to slice them, apply dye and look carefully through a microscope.

Cheryl,

Initially I was told the surgeons were removing four lymph nodes. Then was told post-surgery there were actually six of them, because two were hidden inside one of the initial four. The main lymph node on my cancerous side was removed (the 'sentinel' node.)

They were all biopsied and tested negative. How I wish there was an easier way to determine that without such an invasive surgery! Now I have no more feeling in my armpit on that side. That I've been told, is my "new normal" going forward.

Whatever. If going to doctors and treatments is also part of my "new normal," I am off to a good start.

Thank goodness for support groups. I didn't know so many women who've suffered with this before my diagnosis. It's opened up a whole new world for me, literally. A woman in a local cancer support group said to me she's made many new friends because of her breast cancer she wouldn't have before.

I'm so sorry for all that you've been through. It's overwhelming to say the least.

Mine is diagnosed at "stage 1,a." But that doesn't make me feel like I'm out of the woods either. The doctors are telling me I'm not a good candidate for chemo so they're not going to give me that for therapy. Only a course of radiation to the one breast, and then the anti-estrogen drug for five years.

That doesn't seem aggressive enough IMO to treat the cancer. I'd rather opt for the chemo if given a choice.

Even the surgeon told me with the lymph nodes testing negative there is still no way to know for sure it hasn't spread elsewhere. I don't take much confidence in that, given its guesswork.

He said they don't do CT scans or PT scans as part of a routine follow-up to see where else there might be cancer in the body. Is that because of the expense involved? I know they're expensive, but isn't treating cancer also expensive?

Would you mind saying what state your cancer hospital is in? The standard of care you describe, is that "normal" industry wide? Or limited to the state where you've been receiving care and treatment?

It's my understanding that for breast cancer survivors you will need the same annual checkups as before for the ultrasounds, and the MRI in place of mammograms going forward (or a combination of all the above.)

I wish you all the best considering what you're dealing with. What you're going through hits very close to home. Even now I feel like my doctors may be missing something.

When I was given the choice of a lumpectomy or mastectomy was told there was no difference in outcome according to my healing or chances of recurrence. Then following the lumpectomy, this week meeting with my radiologist was told the radiation itself will give me a 3-5% chance of developing more tumors within 20 years of the site where treated. That wasn't explained to me before deciding lumpectomy or mastectomy. With the mastectomy I wouldn't have needed radiation.

It does help to be informed. I had little time to be making informed decisions between the diagnosis and the surgery. Meetings with doctors, getting second opinions (they do vary.) And the emotional upheaval the diagnosis involves disrupts the best laid plans.

Hugs to you and yours. Sending love and well wishes your way on a wing and a prayer.

Amyjo Wrote:
-------------------------------------------------------

> When I was given the choice of a lumpectomy or
> mastectomy was told there was no difference in
> outcome according to my healing or chances of
> recurrence. Then following the lumpectomy, this
> week meeting with my radiologist was told the
> radiation itself will give me a 3-5% chance of
> developing more tumors


I talked to too many women who had recurrences. When I had a small cancer in one breast, I went for a double mastectomy, although everyone tried to talk me out of it. I had radiation sickness as a child, so that was part of my decision. With the mastectomy, I was able to bypass radiation. My dr did not prescribe chemo.

I am considered "cured in surgery."



Edited 1 time(s). Last edit at 02/07/2018 12:33PM by kathleen.

I'm glad you have support and I'm sure you're doing what's best for you. Good luck.

Anon for today Wrote:
-------------------------------------------------------
> "Early detection saves lives."
>
> I guess the statistics bear that out, but it is
> certainly not always the case. I'm living (dying)
> proof of that.
>
> I always had my regular mammograms and was never
> told I had dense breasts. But none of it mattered
> for me. I fainted during a mammogram in January
> 2011. The technician squeezed me so hard, I
> mumbled I was going to pass out, enabling her to
> release me from the machine and catch me. I've
> never fainted before or since.
>
> I have no idea if this incident caused some type
> of inflammation in my breast, but I was diagnosed
> a year later with Stage 0 non-invasive cancer in
> that breast.
>
> Because I had non-invasive cancer in more than one
> area of the breast, I had to have a mastectomy. I
> chose a double mastectomy.
>
> Final pathology unfortunately showed I was Stage
> 1A, Triple Negative, with an invasion of 3mm (half
> the width of a pencil eraser). I was told (at a
> cancer hospital ranked by many as the best in the
> U.S.) that I didn't need chemo and had only a 3%
> chance of recurrence, which would decline steadily
> over time. Second and third opinions confirmed
> this.
>
> Three and a half years later, I found a lump under
> my arm. I'd been going religiously to the
> survivor's program at the hospital, which meant an
> oncologist or a nurse felt under my arm every 6
> months. Since I was 1A, I was told -- no
> ultrasound, no MRI, no CT Scan, no Pet Scan was
> needed. The standard of care for 1A was to feel
> under my arms every six months -- nothing more.
>
> Of course, the lump was a major recurrence in my
> nodes. After axilla surgery, I was found to be
> Stage 3C, with 15 positive nodes, plus inoperable
> positive nodes in my collar bone area. The
> situation obviously had been going on for months
> or years without being detected by physical exam.
> When I asked the oncologist how long it had been
> going on, she said, "It's impossible to tell".
> Right.
>
> Anyway, months of intense chemo and radiation
> followed with the intent of treating me to a
> cure.
>
> It didn't work. Last June a PET Scan showed
> cancer in my lungs and bones. I'm now Stage 4
> incurable and struggling to stay alive as long as
> possible with oral chemo.
>
> To quote my surgeon at the famous cancer hospital,
> "Oh what a sad tale you have to tell". .
>
> So, while I agree with the push to have
> ultrasounds as routine care for those with dense
> breasts, I'd also like to see the American Society
> of Clinical Oncologists and the insurance industry
> change the standard of care for 1As, which is
> essentially to do nothing. By the time I found
> the lump, it was simply too late for me.


THANK YOU!!!

Many think that all breast cancers are the same. They are not. TripNeg is a toughie, even in early stages. Very aggressive.

There are over 20 different kinds of cancers which can affect the breast, then the subtypes, and even the subtypes to subtypes.

Does early detection save life. Some times yes. Sometimes no. It's not as black and white as the whole "pink washing" marketing would have the public think.

When I hear that so-and so has "early stage" breast cancer, I'm like "ok. what grade; what about hormonal status and Her2?" among other things.

Amyjo (and everyone),

I want to warn you of sharp edges on stuff. I opened the top freezer of my ice box and got the corner right in my used-to-be boobie.


Amyjo, It seems that you posted a pic of your kitchen one time, and I remember it because I thought you had the same ice box as me. I don't know how tall you are, but I am just tall enough for that sharp corner of the door to snag me.

I sold my mountain bike because I'm a clumsy schmendrick and fell and got a handle bar right in the chest. Don't want to do that again.


Take care all.

AmyJo: Important message. Thank you. I haven't heard that they do ultrasound here along with a mammogram, just the mammogram, but more if there is a problem seen, of course.

My mother and maternal cousin have both had breast cancer. Mom and maternal aunt have both had gyne cancer. Scary stuff as it's possibly in all our genes. We have to do the best we can with the routine checks.

Mom is on the anti-estrogen pill for 5 years. She also had radiation after mastectomy.

If they are recommending no chemo I wouldn't push for it "just in case" it might help (it's no walk in the park, as everybody knows) but I would sure research the issue and, as you say, get a second opinion if possible. I would not, especially after a recent experience in the medical world, just "trust" the doctors. Nothing against them as a group but it's way past the time when they were considered gods, or should be. They are fallible. They make mistakes. We should hopefully be able to access a second opinion and definitely should be given their time to explain the findings in detail and all the options for treatment. Our own common sense can also be part of the treatment plan as if something isn't making sense or we still have questions or we feel the MD is missing something we should ask about it until we are satisfied that the best plan is being followed and we are a main part of decision-making and thoughtful care.

I have had a recent experience with a family member where multiple MDs of different specialties missed a major diagnosis, for no reason that I can yet identify. Even non-MDs could tell that she was very ill but the drs kept saying "she's fine". Turned out, not so much. So I'm the last one now to say "dr knows best". Questions are your friend. Stick up for yourself. Patients should be an active part of the care, if they are capable.

To "Anon for today": I am so very sorry to read of your situation. I don't know what to say. You are helping so many people by telling your story. I hope the medical team working with you are informed about what has occurred and change their approach accordingly. Here's hoping that your current treatment does hold things at bay for you. Thank you so much for telling us what happened to you. Take care and all the best to you.

This is the most important thread that I have ever read on RfM. Thank-you all for sharing your stories.

My wife has survived cervical cancer but the anxiety of recurrence is an ongoing issue. My wife's mother is three years into her breast cancer battle and probably has less than a year to live. Needless to say, my wife is worried that she will end up with breast cancer someday as well. I had no idea about breast tissue density until now. With this new understanding, it will help us to continue to advocate for our health.

As we were working through my wife's health issues last year, I came across a study indicating that few doctors stay current with new medical discoveries. Apparently, only 10% of doctors have the time to keep themselves informed of the most recent findings in their field. Therefore, the onus is on the patient to research all that they can on their diagnosis and treatment. Obviously, being aware of the limitations of a mammogram or x-ray will assist those with dense breast tissue in advocating for themselves. I will share this information with all of my family members! People are complacent in thinking that cancer will not happen to them. As for the men, get your PSA levels checked yearly as well! Being proactive is much easier than dealing with cancer.