Sign the Petition Against the new Mammography Guidelines
Comments
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Diagnosed at age 50 no history in family.
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Did not have a mammogram for almost three years as all my mammograms had been negative. No family history of breast cancer. Diagnosed at age 44 with stage IIA; very fortunate to have caught early enough; had I waited another 2 years as the new guidelines are suggesting I would have been far too late. DO NOT change the guidelines for mammography; early detection is VITAL to life preservation!
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My Great Grandmother was dx @ 70 via routine mammo, IDC, left breast, ER/PR + tx: lumectomy and tamoxifen. Passed @97 not cancer related as far as we know.
My Grandmother was DX @ 67 IDC, left breast, ER/PR + tx: left MX and tamoxifen, Second DX @ 76 IDC, routine mammo/check-up, right breast, ER/PR-, Her2+, tx: right MX and chemo (not sure all of the drugs, but sure she did receive Herceptin). We are currently waiting for the follow-up scan to confirm that the cancer is still not spreading or present in any other areas of the body.
My Mother was DX @ 53 first mammo in ten years and her docs said the cancer had probably been present for at least seven years, IDC, left breast, ER/PR+, she endured only two radiation treatments and passed within six months.
I had my first mammo at 31, I insisted due to my family history. I had been experiencing pain in my right hip and spine for a few years and was assured that although they had seen a small shadow on the bone via MRI that it was not cancer but merely arthritis starting and bursitis resulting from the beginnings of arthritis. I was also assured that my non-digital mammo was also clear. The following year, two months after my mother passed I found a 2.1cm mass in my left breast. Because I was so young they were sure I had polycystic breasts and it took almost two months to see a specialist who thankfully had me in surgery within two weeks of that appointment.
I was DX 2008, three lesions of IDC, and DCIS in all four quadrants of my left breast, I also had suspicious areas of my right breast that they assured me was not cancer although they looked exactly the same to my un-trained eye. I opted for a bilateral MX although they assured me it was not necessary. I received four infusions of Adriamycin and Cytoxan. I had a severe reaction to Taxol and was unable to receive the last of my 6 month regimen. I was given Tamoxifen.
I was refused a PET scan because they said I was asymptomatic. In the end of 2009 the pain in my right hip and spine began to flare up but I was told that because this was a previously dx condition it was not cancer related and again I was refused a PET scan. In May I was seen by my Onco (I moved to a new city and was being seen locally at this point). He gave me a very light physical exam and said I was clear, referring me to my PCP for the pain that had now become so severe I was taking several thousand mg of anti-inflammatory per day. Luckily I found a new lump under my left arm TWO DAYS LATER!!!!! At this point they would still not schedule the PET scan till the biopsy results were back. When I finally received a scan I found the cancer was definitely in all of my pain areas and these were also the largest areas of recurrence. I also have trouble breathing due to the metastases in the lymph system around the bronchioles. Strangely enough these were also the areas of metastases as my mother--she was assured the pain was due arthritis and emphysema. I am now being treated with Arridea and Gemzar. I will get my second PET scan Sunday and I am hoping for regression.
I am 35. I am BRCA1/2 -. They did find a polymorphism on the gene that had also been identified in 90 other families but have assured me it is not cancer related. SURE. I don't think these odds games are in the favor of the people in our country. I think it shows that our government and healthcare providers believe that our lives are not as important as valuable as the money that is "wasted" on negative tests. Maybe the prices are too high? My life is important. I am not wasting it. I have dreams and goals and achievements that I want to accomplish before I die. I don't know if anything would have been different if my case had been handled differently, but I would like for others to see that we MUST fight for our care at times, and listen to our bodies telling us something is wrong. Doctors and scientists do not have the whole picture at this point and although they may know more than the average person, they need to really listen to us and stop dismissing our concerns as anxiety or paranoia. There must be other areas to save money and if not then stop trying because our lives are at stake.
Please add my name to the petition.
Tennille E. Littleton
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diagnosed age 44, stage IIIa, ER-, PR-, Her2+, 1.6 centimeters, 4 of 15 nodes positive, first mammogram. If I had waited until I were 50, I would be dead. However, I should have gone at 40!!!!! I was nursing though. At 40, 41 and most of 42! Symptoms brought me in however. I had a tiny little sore on my nipple that would not go away with cremes and my nipple was becoming inverted. Most of my cancer was non-invasive (roughly the entire breast, which had to be removed and would have had to be removed even if it didn't turn into an invasive carcinoma). This cancer was in my breast for a long time. Probably in my 30's. Who know when it went invasive. But it managed to go to four nodes and it was a small tumor.
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Yes, I would also like to add, that my tumors were not detected on the mammogram. No surgeon or oncologist could find them when they manually touched my breast. I had numerous calcifications on the mammogram (DCIS) which then led to an ultrasound. I had three tumors, the largest was 1.6cm, the smallest .80 mm. Just a note. I hope to see my young children grow up and my heart goes out to others fighting this diagnosis. I had no problems getting a PET scan, which showed no metastis at this time. I got the scan before surgery for staging.
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Jennifer Jewell
Diagnosed at age 38, no family history. Found the lump myself, confirmed with mammogram and ultrasound (which I probably would not have gotten if not for the Paget's). Age 40 is too late for screenings, as a Grade 3, I probably wouldn't have lived to age 40. Screenings need to be earlier, not later, and not just for women who are "at risk". Everyone is at risk. And I agree with Kathleen, they say that on average, cancer takes 8-10 years to get to 1 cm. It was in me long before I got my first mammogram.
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Janice Fritz
Diagnosed at age 32, Found a lump in my right breast during my monthly exams at home. Made an appointment a week later. Had mammagram and ultrasound and a week later core biopsy said cancer. Set up an appointment with the surgeon where she scheduled a MRI to see if it was in the other breast. She said that a spot showed up on my rib so the following day I went for a PET scan. The next day was my surgery I arrived at the hospital for surgery were I was told I couldn't have the surgery because the cancer had spread to my bones. I started chemo that day instead. I was in shock 32 and Stage IV. I really wish I could have started getting mammogram instead of getting turned away. Then maybe I wouldn't have to tell my 9 and 6 year old daughters that mommy is always going to have cancer.
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I was recently diagnosed with early stage bc. It is NOWHERE in my family or extended family yet I have been vigilant in yearly mammograms since turning 40. I am 42 and was diagnosed in October. I thank God that I had enough sense to get yearly mammograms which enabled them to catch this disease early. I go to the Elizabeth Wende Breast Care Clinic for my mammograms. She is a world renowned pioneer in the prevention and detection of bc since the early 70's. She is still there and has built this huge facility for breast care and I met her personally as she diagnosed me and talked to me at length. After she told me I would be fine, she said "and imagine if the current goverment had their way? You wouldn't have been able to have a mammogram until age 50......THEN what????? Enough said.
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Stage II TNBC diagnosed age 35!!! There should be no age minimum for quality care.
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Linda H - dx age 61, 8/17/10 - IDC did not show up on mammogram, my breast specialist found it when he was taking out a papilloma that showed up on the mammogram- it was beside the papilloma in scar tissue.
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I had digital diagnositic mammos every year from the age of 40. At age 44, mammo failed to find 1.97 cm tumor. I noticed the skin dimpling and had an ultraound. We need to utilize better technology.0
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Jennifer Sanders--dx. 34 with no family history, BRCA+....my daughters can't wait till there 50.
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Heather McDaniel - dx age 27 with no family history. By the time I would have been eligible to get a mammogram covered by insurance it would have been too late.
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I'm a lucky lady. I have her2 breast cancer and was stage 4 I'm under treatment for the rest of my life and with out screenings I wouldn't be here almost 3 years later.
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I actually listened to the groups who were on TV and news about changing the guidelines. My friend was not impressed because at 44 I had not had a mammo. went and found out I had it. early stage. Do not change the guidelines!!
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Dx at age 44. Stage 3. No family history.
Changing the 'guidelines' to save money is costing us more than money... it's costing us our mothers, sisters and daughters!
Is this economy related???.. who do they think is out there spending the money??.. If women weren't out there spending the money, there would not even be an economy! Whose going to raise the young children if a woman is not dx early enough? Shall we also move prostate cancer screening back 10 years too??... no...this not what we want either... sometimes you just have to put it back in the man's lap!
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I was diagnosed with breast cancer at the age of 49.DCIS stage 0 pn0(i+) ER?PR+. My mother and her mother both passed away from breast cancer. My aunt had it but survived. My cousin was younger that I was when she was diagnosed. My other aunt, mothers sister, was diagnosed with breast cancer at the same time I was. This all comes down from my mothers side of the family due to being part Ashkenazi Jewish. If genetics play a role in breast cancer, why do we need to change the mammogram guidlines. I would hate to have to be an African American woman and be left behind at a younger age with an aggressive cancer!!!! This is alarming!
Agada
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Julie Hornick - age 44 at diagnosis. No family history. Stage 1 IDC found with routine mammogram -- there was no palpable mass. If I'd had to wait to age 50 to start routine mammograms, there's no telling how far it would have gotten before I found it.
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No, bugmenot, they do not but they did allow me to know I had cancer before I could feel a lump. Forewarned is forearmed.
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bugmenot,
Where is it being said that mammo's are anything but a diagnostic tool.?
I am taking this issue head on with the MD's where I work. It is equally worrying that self breast exams are not felt to be of merit. Yes, I did hear the long 30 minute rationale, and the end result was broken down into....if a lump is found then what? There was a concern about the extra stress of going through tests on the patient, the financial consequences (yes, this is one of the reasons for the guidelines being changed,) and the MD's own burden of having to decide what to do next. Yes, I have found cancer to be very stressful, thanks. Death would even be more stressful, at least for my family and loved ones.
I am not allowed to teach self breast exams. Yup, true statement.
So I told him, in other words, I would be dead. (I found my lump myself, and was able to immediately discern I was in big trouble.)
In other words, the reasons are financial.
In other words, you don't want to order additional tests (see the dead comment.)
In other words, you cannot be my MD.
I also tossed in the words insulting, sexist and misogynist, but under my breath only. The other Medical Director is a woman, and she also supports the new guidelines.
Do you think they would feel differently if it was them, or their daughter, mother, sister, wife?
Do you think I will go quietly into the night?
We are intelligent beings, capable of rational thought and responses. What is a few moments of stress to a young mother with three children? The stress can just as easily be relieved with benign results. They know not what they do.
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I was diagnosed at 42 years old with no family history and no lump palpated by my primary care doctor, my OB/GYN or myself. It was a routine, baseline mammogram, my 1st one ever. Thank goodness I didn't have to wait till age 50 for my 1st mammo. I'm sure my 4mm ILC tumor and the LCIS they found on pathology in both breasts after my bilateral mastectomies would've grown in the 8 years between 42 and 50. Please. If we were talking about prostate or testicular cancer, the guidelines would recommend EARLIER screenings, not later.
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Tiffany Cox- age 44 at dx. Only reason I had annual mammos because of lump found 10 years earlier that was benign. My OB/GYN felt nothing in April 2010. Thank goodness I regularly check myself as I felt a lump by June. Had mammo early August. 1cm IDC and .7cm DCIS. Triple Negative.
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I was just recently diagnosed at age 36. If I would have waited 4 more years for what is NOW the guidelines, Lord knows where my cancer would be. Extending those guidelines to a later age in life is RIDICULOUS! It has been proven over and over and over again the early detection is the key. If we continue to push the age requirement to the older we get....then how can early detection be possible?
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Diagnosed June 28, 2010 age 55, routine yearly mammogram. Tumor was 0.06 cm. Could not be felt or seen on ultrasound...the radiologist saw a density change on my mammogram. If I had skipped my routine mammogram, I am sure I treatment would be more extensive than Tamoxifen and mastectomy. Early detection is the key!
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Cindy Rosenfelt: Mammogram since I was 35, due to I had Hodkin's Disease when I was 24. Now, at the age of 40 have been diagnosed with Breast Cancer, of which I found. The scarry part is that with 5 years of mammograms, the machine did not see it the prior year. My aim is to get the medical field to see that sometimes a breast MRI is more important that mammogram, depending on the case. With a breast MRI following my mammogram, they found another suspicious mass. Thankfully, it was negative. But, changing mammograms would only hurt other mother, daughters, sisters.0
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I don't have cancer, but am a high risk due to Family History and Atypical Ductal Hyperplasia. Sister diagnosed at age 35, advanced breast cancer. I myself had a lumpectomy at 46 due to ADH. Women cannot wait until the age of 50 for mammograms. I agree with some of the other posts...early detection is the key. If is far less expensive to treat cancer in the early stages.
I would also like our health reform to take into consideration women with dense breast tissue. Mammography doesn't always catch cancer with this type of diagnostic tool. I would like allowances to be made with this type of diagnosis and allow the patient to have further diagnostic tests available to her...such as the ultrasound or MRI.
Thank you,
Margarita
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Pinkrose, I agree. Mammos are far less effective on women with dense tissue, when effective at all, and there needs to be reform for special consideration of those women. Diagnostics are not a one-size-fits-all approach, any more than treatment should be.
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Laurie Watts diagnosed at 34.
I do have a strong family history, no mammograms don't always find the problem, but sometimes they do, it found mine. I say no matter the age, if you want one you should be able to get one. I had to fight like hell to get a Dr to sign off on me having one due to my age. Thak God I did.
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Karen - Diagnosis: IDC / DCIS 12/1/2010, 1.4cm Stage 1, Grade 1, 0/3 sentinal nodes, ER/PR + HER2- Lumpectomy, APBI w/ SAVI device (5 days radiation x twice a day)
Found in Mammogram in October, 2010. Last Sept, 2009, clear Mammography. We must support annual Mammograms! I feel so fortunate to find this evil little tumor so early. I have osteoporosis so I will probably be taking Tomoxifin for a couple of years before taking aromatase inhibitor. Very concerned about the side effects. I was on HRT, insomnia is terrible already and already having vag tenderness/dryness. I have to laugh when I read that you might have vag dryness. It's way more than just dry, it's like my vulva has a sunburn! Sorry to be so graphic. Anyone else have that feeling? I have never heard of that. I have been so positive until last Friday when I saw the medical oncologist and was told about the side effects of these hormone blockers. Scared...
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diagnosed 47 via MRI. No lump could be felt. On Tamoxifen now as prevention.
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