Please make sure you are in control of your body!

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Nana C.
Nana C. Member Posts: 108
I started having Mammograms and yearly check-ups when I was forty, just like I was suppose to. When I discovered my tumor it was already over 2cm. ( I was 50 yrs old) I didn’t really think it could be anything because I always did what I was suppose to right? I was scheduled for a monogram on the day I discovered the tumor. I canceled it because there was a big snow. You know how we are in Kentucky. Everything shuts down. My husband was not at all happy because I canceled it, but I rescheduled it for Friday. That night in the shower I discover the tumor on my breast. I did know what it was, can’t explain that other than my best friend from the age of 30 yrs. had passed away with breast cancer IDC, the same as I have 4 years before. On the way to the Mammogram I was not even sure even I was going to mention it because if it was anything it would show up on the mammogram. Wrong. I am so thankful that I did indeed tell the technician, she kind of pulled out of me, but in the end I told her. After the mammogram was taken to radiologist she came back and told me I had to have an ultra sound, the tumor that I could feel and the tech could feel did not show up on the mammogram. I had a biopsy 2 years before on the same breast in a different place, was benign. After the dr, read the ultra sound he came back out to talk to me I need a biopsy, he wasn’t as hopeful as he had been 2 years prior. Story goes, Monday had Biopsy, and within 10 days I had a lumpectomy with node involvement. I had Taxotere, Cytxon and Avastin and 33 radiation treatment and now taking Tamoxafin. When I saw the surgen for 6 months check-up she orderer a momogram. I explain my lack of faith in them, she explained that they both show different things so I should have the momogram, so I did, that is a whole story in itself. The teck left me sitting for an hour, we all no what that mean, but she just forgot to come back and tell me I was fine! I am getting ready to have my port removed so I wanted another MRI because the MRI that I had before surgery should the cancer and 5 more benign areas that had never been seen. MY onco dr. who I adore told me an MRI was necessary. I had an appointment with my surgeon and to get my port out, but I wanted an MRI, she went on to explain not need it. I explained by fears, she said she would look at all my past test and call me. She called the next morning; yes I should have a MRI. It is scheduled for Dec. 14th. I am sorry this is so long, but I just want to let everybody know, you have to be in control of your own body, even with the best of Drs.

Comments

  • taiga
    taiga Member Posts: 75 Member
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    AMEN!!
    I was dx. with ovarian cancer July 2010, BRAC (-) and have been on Avastin all year as part of a clinical trial. I have always been told I had extremely dense breast tissue, thinking so what, so have a lot of women. I had a mammogram last year and again in October this year and both times I got an "all clear" letter. I felt a lump in my breast within a month of my mammogram. Long story short, I have a 2.5cm tumor in my right breast. ER+, HER2+. The breast surgeon said he had never seen breast tissue that dense in someone my age (51)and that reading my mammograms would be very difficult. Gee, would have been nice for the radiologist, who saw I was battling ovarian cancer, to say they couldn't really see anything, perhaps do an ultrasound? I would suggest that we at least get a copy of our report, not just the letter, and if it says "extremely dense breast tissue" translate that to mean they can't see anything. My tumor didn't even show up on the diagnostic mammogram, only on the ultrasound.
  • Nana C.
    Nana C. Member Posts: 108
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    taiga said:

    AMEN!!
    I was dx. with ovarian cancer July 2010, BRAC (-) and have been on Avastin all year as part of a clinical trial. I have always been told I had extremely dense breast tissue, thinking so what, so have a lot of women. I had a mammogram last year and again in October this year and both times I got an "all clear" letter. I felt a lump in my breast within a month of my mammogram. Long story short, I have a 2.5cm tumor in my right breast. ER+, HER2+. The breast surgeon said he had never seen breast tissue that dense in someone my age (51)and that reading my mammograms would be very difficult. Gee, would have been nice for the radiologist, who saw I was battling ovarian cancer, to say they couldn't really see anything, perhaps do an ultrasound? I would suggest that we at least get a copy of our report, not just the letter, and if it says "extremely dense breast tissue" translate that to mean they can't see anything. My tumor didn't even show up on the diagnostic mammogram, only on the ultrasound.

    Same Thing!
    I too have been told about the extremly dense breast. Would have thought they would have told me that about 10 years ago! They couldn't see anything either. I was part of the Avastin Trial as well. I took that for a year. To Me all clear on a mamo means nothing, but to someone without dense breast I am sure it is a very good tool.
  • crselby
    crselby Member Posts: 441 Member
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    Dense tissue? So what? .... Indeed!
    Like everyone else who has posted so far, most of my docs have ignored the "dense tissue" part of my reports. However, with the last 2 reports, the radiologists have put "heterogeneously dense tissue which may lower the sensitivity of mammography." I have had one ultrasound as a result, but only of the affected (DCIS, lumpectomy, radiation) breast. I have to beg for an ultrasound of the other breast, which is also dense and at higher than normal risk for cancer development due to having had DCIS in the other breast. Hasn't gotten me anywhere EXCEPT with my breast surgeon, who specializes in breast cancer (not enhancements, etc.) That doctor is FEMALE. Do you suppose she listens to my requests because she understands more? She's one of the best surgeons in the Phoenix area.

    My breasts are quite large so self-exams, doctor exams, and ultrasounds take a little longer. Mammos and MRIs take the same amount of time whether the breasts are large or small. See, I really got the feeling that the radiologist who interpreted the last mammogram felt really "put-out" when I asked, "I thought I was also supposed to have an ultrasound" after the bi-lateral mammo was completed and they were rushing me out the door. She DID insist that only the affected side needed to be ultrasounded, not both, even though the doc had ordered both.

    It's tough to stand up and take control when you are fighting against the very people who are treating you. And who wants to antagonize the people who are interpreting the xrays and other images!!! But it is SO good to be aware that, yes, doctors (and others) sometimes have priorities other than what is best for you. Sad but true.

    Fight for what you think is best for you. No one else will.

    ~~Connie~~
  • SIROD
    SIROD Member Posts: 2,194 Member
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    taiga said:

    AMEN!!
    I was dx. with ovarian cancer July 2010, BRAC (-) and have been on Avastin all year as part of a clinical trial. I have always been told I had extremely dense breast tissue, thinking so what, so have a lot of women. I had a mammogram last year and again in October this year and both times I got an "all clear" letter. I felt a lump in my breast within a month of my mammogram. Long story short, I have a 2.5cm tumor in my right breast. ER+, HER2+. The breast surgeon said he had never seen breast tissue that dense in someone my age (51)and that reading my mammograms would be very difficult. Gee, would have been nice for the radiologist, who saw I was battling ovarian cancer, to say they couldn't really see anything, perhaps do an ultrasound? I would suggest that we at least get a copy of our report, not just the letter, and if it says "extremely dense breast tissue" translate that to mean they can't see anything. My tumor didn't even show up on the diagnostic mammogram, only on the ultrasound.

    ALL Test Results & Doctor's Note
    One should have a copy of the results of all tests (ct, PET, MRI, ultrasound, Blood, bone) and just as important a copy of your doctors, surgeon notes of your visit. You will be surprise what you read, what they think they said and did not and etc. One wants to be on the same page as them or if not, understand why the difference.

    Results and notes belong to you, the person who is the most interested in it. One pays for these tests and appointments and should have the paper to show for them.

    My 2 cents worth.

    Best,

    Doris
  • Angie2U
    Angie2U Member Posts: 2,991
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    SIROD said:

    ALL Test Results & Doctor's Note
    One should have a copy of the results of all tests (ct, PET, MRI, ultrasound, Blood, bone) and just as important a copy of your doctors, surgeon notes of your visit. You will be surprise what you read, what they think they said and did not and etc. One wants to be on the same page as them or if not, understand why the difference.

    Results and notes belong to you, the person who is the most interested in it. One pays for these tests and appointments and should have the paper to show for them.

    My 2 cents worth.

    Best,

    Doris

    My oncologist has me get a
    My oncologist has me get a mammo and ultrasound every 6 months and a MRI every year, which I am grateful for. I know that sometimes bc doesn't show up on a mammo.


    Hugs, Angie
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
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    crselby said:

    Dense tissue? So what? .... Indeed!
    Like everyone else who has posted so far, most of my docs have ignored the "dense tissue" part of my reports. However, with the last 2 reports, the radiologists have put "heterogeneously dense tissue which may lower the sensitivity of mammography." I have had one ultrasound as a result, but only of the affected (DCIS, lumpectomy, radiation) breast. I have to beg for an ultrasound of the other breast, which is also dense and at higher than normal risk for cancer development due to having had DCIS in the other breast. Hasn't gotten me anywhere EXCEPT with my breast surgeon, who specializes in breast cancer (not enhancements, etc.) That doctor is FEMALE. Do you suppose she listens to my requests because she understands more? She's one of the best surgeons in the Phoenix area.

    My breasts are quite large so self-exams, doctor exams, and ultrasounds take a little longer. Mammos and MRIs take the same amount of time whether the breasts are large or small. See, I really got the feeling that the radiologist who interpreted the last mammogram felt really "put-out" when I asked, "I thought I was also supposed to have an ultrasound" after the bi-lateral mammo was completed and they were rushing me out the door. She DID insist that only the affected side needed to be ultrasounded, not both, even though the doc had ordered both.

    It's tough to stand up and take control when you are fighting against the very people who are treating you. And who wants to antagonize the people who are interpreting the xrays and other images!!! But it is SO good to be aware that, yes, doctors (and others) sometimes have priorities other than what is best for you. Sad but true.

    Fight for what you think is best for you. No one else will.

    ~~Connie~~

    Doris and Connie
    Doris and Connie, I know exactly what you mean.I've been through the mill so many times with misdiagnosis.Not for cancer but other medical problems.Even ended up in the hospital for a month. I was told I needed to be in the hospital for nerves(nuts) and the doctor told me he was putting me there if I didn't quit complaining.It wasn't nerves with a fever(yes a fever) and throwing up.It was a serious strep bladder infection. I had been taking meds for a month.The WRONG med.The doctor never did a urinalysis(a 3 day culture) to find out what type of infection and what to treat me with. Simple amoxicillin took my fever down within 45 minute after running one for a month. Still I had a port put in and was fed high potent vitamins through a IV for a month. SENSELESS.

    The bc hasn't been misdiagnosed but delayed treatment and surgery. It puts alot of stress on the body.What our doctors tell us we DON'T need.

    Lynn Smith
  • missrenee
    missrenee Member Posts: 2,136 Member
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    Doris and Connie
    Doris and Connie, I know exactly what you mean.I've been through the mill so many times with misdiagnosis.Not for cancer but other medical problems.Even ended up in the hospital for a month. I was told I needed to be in the hospital for nerves(nuts) and the doctor told me he was putting me there if I didn't quit complaining.It wasn't nerves with a fever(yes a fever) and throwing up.It was a serious strep bladder infection. I had been taking meds for a month.The WRONG med.The doctor never did a urinalysis(a 3 day culture) to find out what type of infection and what to treat me with. Simple amoxicillin took my fever down within 45 minute after running one for a month. Still I had a port put in and was fed high potent vitamins through a IV for a month. SENSELESS.

    The bc hasn't been misdiagnosed but delayed treatment and surgery. It puts alot of stress on the body.What our doctors tell us we DON'T need.

    Lynn Smith

    I can relate
    I've been getting mammos since I turned 40. In just about every report it's stated that my breast tissue is "extremely dense which appears normal but should be followed up clinically." Low and behold, about 3 months after a "normal" mammo I'm diagnosed with Stage 3C breast cancer with 10 positive nodes. I said to the surgeon--looks like that's been there a while. Of course, he wouldn't confirm or deny that statement.

    Hindsight is 20-20, and I'm not a doctor, but I sure wish someone (including myself) had pushed for further testing. But, with no family history (which we all now know doesn't mean much at all) and no symptoms--no further testing was ever done on my "extremely dense breast tissue." My humble opinion is that once again--it's all about money. The doctors are letting the insurance companies take over our care. My friend (who is a cardiologist) told me in not so many words that doctors who "over prescribe testing" are not looked at kindly by the insurance companies and sometimes get red-flagged. Hmmmm. All at our expense.

    Anyway, it's a new day and I'm a lot more demanding patient (or, I'll call it very pro-active!)

    Have a good one, pinks.

    Hugs, Renee
  • Ritzy
    Ritzy Member Posts: 4,381 Member
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    Nana C, this is such an
    Nana C, this is such an important post and I thank you for it. It seems that we do have to be our own advocates in order to get the best health care and necessary tests.

    Wishing you all the luck for your MRI on the 14th. Let us know your results!


    Sue :)
  • jamiegww
    jamiegww Member Posts: 384
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    crselby said:

    Dense tissue? So what? .... Indeed!
    Like everyone else who has posted so far, most of my docs have ignored the "dense tissue" part of my reports. However, with the last 2 reports, the radiologists have put "heterogeneously dense tissue which may lower the sensitivity of mammography." I have had one ultrasound as a result, but only of the affected (DCIS, lumpectomy, radiation) breast. I have to beg for an ultrasound of the other breast, which is also dense and at higher than normal risk for cancer development due to having had DCIS in the other breast. Hasn't gotten me anywhere EXCEPT with my breast surgeon, who specializes in breast cancer (not enhancements, etc.) That doctor is FEMALE. Do you suppose she listens to my requests because she understands more? She's one of the best surgeons in the Phoenix area.

    My breasts are quite large so self-exams, doctor exams, and ultrasounds take a little longer. Mammos and MRIs take the same amount of time whether the breasts are large or small. See, I really got the feeling that the radiologist who interpreted the last mammogram felt really "put-out" when I asked, "I thought I was also supposed to have an ultrasound" after the bi-lateral mammo was completed and they were rushing me out the door. She DID insist that only the affected side needed to be ultrasounded, not both, even though the doc had ordered both.

    It's tough to stand up and take control when you are fighting against the very people who are treating you. And who wants to antagonize the people who are interpreting the xrays and other images!!! But it is SO good to be aware that, yes, doctors (and others) sometimes have priorities other than what is best for you. Sad but true.

    Fight for what you think is best for you. No one else will.

    ~~Connie~~

    I didn't understand what they meant.
    I went eight years without a mammogram because two years in a row I was told I had dense breast. I thought that was "code" for saying I was fat and I didn't want my feelings hurt anymore. What they had decided was a cyst, turned out to be cancer eight years later. If I had known then, what I know now, I would have insisted on a biopsy but at that time the thought of breast cancer never ever entered my mind. I urge everyone to ask questions if they don't understand what they are being told about their test results.
  • Nana C.
    Nana C. Member Posts: 108
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    Ritzy said:

    Nana C, this is such an
    Nana C, this is such an important post and I thank you for it. It seems that we do have to be our own advocates in order to get the best health care and necessary tests.

    Wishing you all the luck for your MRI on the 14th. Let us know your results!


    Sue :)

    Thank You!
    Sue, Thank you so much. That means alot to me.

    Hugs
    Nana
  • Ritzy
    Ritzy Member Posts: 4,381 Member
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    Nana C. said:

    Thank You!
    Sue, Thank you so much. That means alot to me.

    Hugs
    Nana

    Nana, I am here for you as
    Nana, I am here for you as well as the other pink sisters! We are family!


    Sue :)
  • mamolady
    mamolady Member Posts: 796 Member
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    Dense Breasts
    I too had very dense breasts. The mammo did not see the 3 masses. The smallest one was 1.5 cm. I never was really good about checking but even the doctor could not feel the 1.5 cm lump because my breasts were really lumpy anyway.
    Needless to say I had a bilateral mastectomy.

    Right now the guidelines are that if you have 2 family members with one being your mom or sister, then they may give you a screening MRI. I would think the rads could suggest that a MRI is warranted if the mammo is not effective. Hopefully some day! The good news is that my daughters and my sister all get MRI's now.

    If any body has been diagnosed before 50 and has a sister, urge your sister to push for an MRI. I wish I had.

    Cindy