Mammograms for women under 50

Ilikedogs

Hi. I am relatively new here and have been doing a lot of reading and research in the last month or so. I have a question and I really don't want to anger anyone. It is a genuine question in case anyone looked into it as well.

I read several studies showing that mortality rate in women under 50 is the same regardless of mammograms. Absolutely no difference. Not only that, but in the last 30 years since mammograms became prevalent, mortality rate for breast cancer has not reduced proportionately. We are diagnosing and finding more early cancers and they are almost 100% curable so that increases survival rate. And while we are curing more non-DCIS cancers, the % is nowhere near to the increase in mammograms. It is more likely that treatments have improved, rather than mammograms have contributed to the reduction.

On the other hand, increase in new diagnostic procedures for colon cancer, for example, or Pap smear lead to a significant decrease in mortality. With mammograms we haven't seen that, especially for women under 50.

Take a look at this graph for example incidents of “Localized" (often DCIS) increased with mammograms but “Regional" and “Distant" (more dangerous types of BC) have essentially been stable since 1975. Look at metastatic line! Yikes! No improvement in diagnosis at all with since 1975!

Now this scares me. And this isn't some crazy whack sitting on his farm surrounded by lamas (I like lamas. These are actually studies by medical organizations/hospitals. One of the scientists I read works at Dartmouth medical school. Another study was from Canada where they don't even recommend a mammogram until the age of 50, and show essentially the same mortality rate as us here in the US.

What am I missing here? Up until this nightmare I amgoing through right now I never ever ever questioned any medical advice. I come from a family of scientists where science and medicine are unquestionable.

Why am I all of a sudden reading all this information? Is it new? Is it garbage? I am just confused. Anyone else encountered this?

exbrnxgrl

Though not as science minded as you or your family, I do consider myself an academic. Yes, I was aware of the fact that bc deaths had not proportionately decreased in the past 30 years. Let me add that I knew none of this until my own dx. All I can say is that bc is not a single disease given the different types, sub-types, and crazy combinations of all of these things. Metastasis and what exactly triggers it is still not well understood. Remember, you can have clean nodes but still have bc travel through your bloodstream, and those are not easily detectable until it’s apparent.

So the dilemma is that, through various imaging, we have been able to find very early cancers, there has been much less success in preventing metastasis. It appears that bc cells can sleep for decades and then rear their ugly heads as mets (local recurrence would not be mets). I don’t know much about other cancers but I am still blown away by the complexity of bc. Yes, a fine job has been done with awareness and early detection which has lead many to believe that bc is no big deal anymore and no one dies from it. Why no focus on the only type of bc that kills people, Stage IV?

voraciousreader

i applaud you for doing the digging. Sadly, you are not missing a thing. Quite sobering…

That said, on this website, which was created by a radiologist, who sadly, and coincidentally received a breast cancer diagnosis, a few years AFTER founding this website, will argue that POPULATION BASED SCREENING imaging DOES improve mortality. I most respectfully disagree and will often argue, if people did the kind of digging that you and I did, one can conclude that for many, we DESERVE better screening AND at the very least, better imaging.

i will go further by saying, perhaps if less dollars were spent in population based screening that DOESN’T improve mortality AND more money was spent on researching better types of population based screening, maybe, just maybe, we would have better screening AND more treatments AND a cure

voraciousreader

exbrn…yes

voraciousreader

now…let the arguing begin…5,4,3,2,1….

Ilikedogs

That's what scares me. Not just over-diagnosis and extra stress but the fact that we are making relatively small progress on breast cancers that kill.

And also finding all these early cancers that used to not kill decades ago, treating them, and then claiming that overall survival rate has increased is not fair. I am honestly in disbelief because I was under impression that we have made such progress with BC. I see the number of 40% reduction in mortality floating around and it used to make me feel so much better. Now I am just more scared than anything.

voraciousreader

like….please do not be frightened. For most, breast cancer is a TREATABLE disease. For some, sadly it isn’t. I think, as Exbrn noted, if people were truly enlightened, then they would DEMAND more research toward treatment and better diagnostics. We are moving in that direction, but so many dollars are wasted on unnecessary screening and poor diagnostic methods..

ShetlandPony

Those of you who have studied this question of what age groups should have screening mammograms, how do you look at my story? I am not sure what to think about it. I was offered a screening mammogram at 40, but decided to listen to those who were saying screening mammograms should start at age 50. But before I reached 50 I found the lump. It turned out to be 1.5 or 1.9 cm, and the sentinel node had isolated tumor cells (technically considered node-negative but I question if that is understaging with ILC because it can spread single file). I was treated for this stage I cancer, but recurred (metastatic) three years later. I can't help but wonder if I had gotten an early mammogram and treatment when the tumor was smaller, if I would still be stage iv now...

exbrnxgrl

Shetland,

Yes, you can wonder about it but you know that bc is just weird and often behaves unpredictably. 13 months after a clean mammo, a 4 cm tumor was found yet it was only grade 1. About 6 weeks after that a 2 cm bone met was found that matched my breast tumor like a twin. My mother was convinced that it happened because I went 13 months between mammos 🤦🏻♀️.Like I said, weird and unpredictable but better imaging would be nice.

voraciousreader

shetland…there will always be cases under 50. Likewise, there will always be cases of people who get their annual population based screening mammograms and are delighted to get the annual “all clear" only to discover a lump BETWEEN annual imaging. Then, the person goes for a DIAGNOSTIC mammogram and low and behold, they find out they have breast cancer.

what the evidence suggests is that population based screening mammograms saves lives, BUT diagnostic mmmograms save MORE lives.

as Exbrn said…breast cancer can be tricky. I will go further and say that imaging and all of its scientific evidence is even more tricky. That is why I advocate for BETTER screening. I am not sure that annual imaging beginning at age 40 is the way to go. I think it gives people a false sense of security AND it can potentially make people feel guilty when a breast cancer is discovered….all the “what ifs."

that said, researchers are in the process of discovering better tools to diagnose all kinds of cancers….perhaps our blood will hold the key, rather than imaging….

Shetland….please treat yourself gently and I am sending you gentle hugs..

SpecialK

I have posted about this many times over the years on this site. I had a baseline mammo at 30, due to being adopted and not having any info about family history and a personal history of multiple cysts at all times from the age of 25 on. I was treated in military facilities where they did not have to justify doing mammos on a person as young as I was. I was diligent about having mammos annually from 35 on. Over the 20 years preceding diagnosis I had multiple cyst aspirations, and often my mammos were followed immediately by ultrasound because there were palpable lumps with no correlation on mammo. At various times I was on a six month US cycle. At one point I even had a mammo, then a US, then an aspiration with an immediate read in the room by two pathologists all on the same day - which was a fascinating experience at the National Naval Hospital in Bethesda, now Walter Reed Hospital. At 54 I had a clear mammo, which was followed same day by a US that revealed multiple cysts, as per usual, but also an irregularly shaped mass right next to a cyst. This was externally palpable in the lower outer quadrant, I could literally roll it between my fingers and it was just under 3cm. There was no indication of it on the mammogram, but it was indeed cancer. I had extremely dense breast tissue, at 54, despite having had a hysterectomy/oopherectomy nine years prior for numerous uterine fibroids. I had a TVUS six months before that surgery that showed no issues with the ovaries, they were taken as a precaution, but I had a 3cm pre-malignant tumor in the right one discovered on post-op pathology. To say that I don't image well is an understatement. It was why I decided on a bi-lateral mastectomy even though I was a lumpectomy candidate. Turns out I had extensive DCIS, with cancerization of the lobules - also never seen on mammo - and IDC in the right breast, but lots of ALH and ADH in the prophylactic breast, which surely would have caused problems down the line if left alone. I had a positive SNB at BMX and my BS and MO both advocated strongly for ALND surgery that followed 5 weeks later. In the additional removed nodes was a large positive one that did not show up on the MRI I had done just prior to BMX. If I had not had the ALND nobody would have been monitoring that node status because nobody knew about it since imaging never indicated it. I went back to the radiologist who insisted that I have a breast biopsy even though he was not sure whether what he was seeing on my US was cancer - I wanted him to know that not only was this breast cancer - it was Her2+ - and that he had saved my life. He invited me to come back to his office and review my mammo once more - there was absolutely zero indication of anything amiss. Had my facility not had the policy of doing immediate US for palpable lumps following a clear mammo things might have turned out very differently for me.

Ilikedogs

SpecialK, your story is incredible. Is there any explanation for this?

I read somewhere that mammograms don’t detect tumor itself - they detect changes in breast tissue around tumor. Does anyone know if this is the case?

I wonder if some more aggressive types spread before they have a chance to change local breast tissue? That would make sense but I don’t know if that’s the case.

And the fact that the radiologist invited you to review your images and still nothing even when you both knew where to look - that’s so strange.

I am glad you are doing well and caught it in time

voraciousreader

specialk….and I will add that my mucinous breast cancer did NOT show up on mammograms. It was, however, mistaken for a cyst, for 3 years, on my annual sonograms due to dense breasts at age 53.

fast forward to 2018…for five previous years, my hip pain was mistaken for back pain. Multiple x-rays and three MRIs later, the orthopedist said I had a “drop of bone on bone” on my hip joint and asked me what I wanted to do. Because I could no longer sit and I do mean I could no longer sit, at all, the decision was made to have my hip replaced. Following the surgery the orthopedist said, “I am so sorry. The imaging failed you. The arthritis was so bad, it covered the entire ball and went deep into the bone shaft.”

imaging failed me TWICE

TB90

The stats on many things in the world of illness and many other things that could kill us like Covid and climate change are grim. Yet life expectancy continues to improve. I have had to make many decisions where there was no clear correct answer or stats to support it either way. Like dogs, your knowledge and education will be your greatest protection. Make choices based upon your personal needs and your personality. I don’t take risks with my health, so chose radiation following a mastectomy and the removal of my thyroid without a definitive dx of cancer. I started mammograms prior to age 50. The only stat that really matters to me is me. Even if only 1 person benefits, what if that person is you or your loved one. Research needs to be guided by stats usually for funding purposes, but our decisions can be guided by us. There is no one or no situation exactly like yours. So keep learning about yourself and your situation and advocate for you.

Ilikedogs

voraciousreader, what did they do with your hip? Could they do the surgery after all?

And thank you for sharing

SpecialK

ilikedogs - the explanation is that my tissue was so dense, that despite the lump being palpable, it was hidden by the density of the tissue. This is one reason why mammography is not as effective a detection tool in younger women with dense breast tissue. Thank goodness the US showed the unusual finding and the radiologist strongly recommended the biopsy. In this military hospital US follows any mammo that does not show a correlation to a palpable lump. As I said, I don't image well and this is why I decided on the more extensive surgery. I would never have trusted mammography - for me as an individual - going forward with a lumpectomy. The node thing was just plain scary - I did not follow the usually predictable situation of larger positivity in the sentinel(s), rather I had only isolated tumor cells. Some in oncology - either surgeons or oncologists - would consider this node negative. My MO/BS insisted on the ALND because of the Her2+ aspect, and thank goodness they did, because there was larger cancer further up. They both have extensive experience and I am appreciative of their collective knowledge - my BS in particular, as he had been head of breast surgery at an NCI center before going into a more private practice/teaching situation. This surgery was done at the time when there was a bit of a shift toward radiating positive nodes rather than doing ALND surgery because of the risk of lymphedema with more surgery - if we had done that it would have been akin to leaving a stage 1 breast lump in place, treating it systemically and locally with rads, but never removing it. Nope.

voracious - are you my long lost sister? Density in our 50's that hid stuff - it is scary. I too had unrelenting hip pain, the only comfortable position weirdly was standing. Sitting and lying down were painful. Of course the first thought was bone mets. Had a bi-lateral and lumbar MRI which revealed trochanteric bursitis and numerous hip rotator cuff stress tears. Fortunately didn't involve surgery, but did result in a solid year of PT. The upside is that I have no residual problems. The MRI also revealed more extensive degeneration in the lumbar - already had L4/5, now also have L/3, and thoracic bone spurs. Eeesh! How are you doing since your surgery - did it resolve your pain? DH had knee pain, had multiple MRIs done, they thought he had cartilege issues so did the exploratory surgery. Cartilege was fine, but it looked like all bones in and around the knee had been scraped on the road outside. The surgeon smoothed them with a tool and now he is good as new. Too many years of marathon running - the surgeon did say if he continued distance running his next stop was a total knee replacement. So, I guess imaging failed him too!

voraciousreader

like…when I woke up with my spankin’ new hip joint, the PA said to me, “What a mess you had in there. But, not to worry! Surgery took a bit longer and involved a little more work. Now, come have a seat.” Sooo…I sat over the side of the bed, took two steps and sat down in a chair. Then, the PA asked, “How do you feel?” And, for the first time, in a very long time, I was COMPLETELY pain free. COMPLETELY. NO PAIN WHATSOEVER.

Special…Each day, I walk 6-7 miles. I never have had pain while walking. When the pain interrupted my sleep, I said to myself, “There is something wrong and I need to get to the bottom of this.” Most people do not realize how much sitting we do during the course of the day. Awakening, we sit up on the side of the bed, then we sit down on the toilet. Then we sit down while making our morning cup of java.throughout the day we sit. In the car, at our desks, in the doctor’s office…”Have a seat” were the three scariest words people uttered at me!

Special…I had debridement of my right thumb joint. Unfortunately, it didn’t work and six months later, they had to remove a small bone and replace it with a “shock absorber.” Debridement of joints is a great option when it works. Glad to hear it helped your DH. I have Ehlers Danlos Syndrome and I have hypermobility of my skeletal joints, so I am an orthopedist’s favorite kind of a patient. Last year, shortly after my second thumb surgery and exactly two weeks after I got out of the cast, I fell and broke my wrist. I was so worried that I ruined my thumb surgery….but thankfully that wasn’t the case. Then, two weeks later, my granddaughter fell and broke her wrist. You should have seen us. I had a cast on my right arm and she had a cast on her left arm. We looked like bookends