Personal Stories is one of the most popular sections of our website. It’s also the one section of our site that is created solely by our readers.  As we start this new year, I just wanted to take a moment to thank each and every one of you who shared your story with us in 2008. It is your stories that inspire me to keep doing all that is necessary to end this disease in our lifetime. I look forward to reading the stories that will be submitted to us in 2009. Learn how to Share Your Story.

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14 Responses to Share Your Story

  1. Lynn Connell says:

    I have been documenting my journey on caringbridge for about 1 month now. My full story can be found in the “My Story” section.

    I am a 46-year-old teacher, mother, and wife from Jacksonville, FL with a strong family history of breast cancer. I have a 16-year-old daughter who l I am just terrified for.

    I pray, work, and hope for a cure in my lifetime.

  2. Roselyn Jones says:

    I’m a mother of two grown daughter.A twenty years breast cancer survivor.Hope to find a cure;cancer has taken my mother,sister and aunts,cousins.I’m the only family member lived the longest.Pray for my girls and family members.The gene is in my family.Thank God to live to see my girls grown.I promise to fight cancer and help other cancer survivors to win this fight against all cancers.I would love to be apart of organization. Thank You Roselyn

  3. Cynthia McWilliams says:

    My mother had breast cancer at 46, my grandmother at 62 and I got the disease at 49. My husband’s sister received her diagnosis at 27 and my husband’s mother at 65. My daughter, who just turned 25, is the unlucky recipent of this gene pool. I pray we find a cure and save everyone’s daughters from experiencing the pain of breast cancer.
    Best to all,
    Cynthia

  4. In 1997 My aunt, my mother’s sister died from beast cancer. In 2001 my mother died from breast cancer, in 2004, her youngest sister died from breast cancer. In 2004 I was diagnosed with a precancerous condition. My doctor told me that we could do one of two things, wait to see if it became cancerous, or to do a double mastectomy. After watching my mother fight the disease for three years, I decided on the surgery. I had a double mastectomy and I do not regret it at all. The only thing that I would have done was to not have the breast implants done. Because all of the breast tissue was removed, I had a lot of nerve damage in the area. So now I have these two appendages sticking out, that feel like i have two tennis balls taped on my chest. As soon as I can afford it I am having them removed. I would rather be flat chested than go through the rest of my life feeling like this. I would not recommend reconstructive surgery to anyone going through this procedure.

  5. Debbie says:

    In November of 2000, I was diagnosed after my first mammogram with DCIS. I had a lumpectomy and my doctor wasn’t very happy with my margins. After a week, I received a phone call about my pathology and my doctor told me that the pathology showed a 3mm size tumor (invasive ductal carcinoma in situ). She recommended getting a mastecomy and remove lymph nodes, but since I was young… 41 years old, she told me to seek a second opinion, which I did at 2 very good hospitals in Chicago. One hospital said to get another lumpectomy. The other hospital took multiple films and said to return in 6 months. My gut told me to get the mastectomy right away, which I did and had TRAM flap reconstruction. After a few days, she came into my hospital room and said, well…its was a good thing you did remove the breast. There was more cancer in a different area, that neither hospital saw on their mammograms, and another lumpectomy would not have removed the new cancer. I had 14 lymph nodes removed with no cancer, so after the surgery and reconstruction, I had no further treatment, due to the size of the tumor and negative lymph node detection of cancer. It is now 8 years later, and every mammogram is a source of anxiety. I did have another scare this year and now will have MRI mammograms in the future. Also, I have recently went for genetic testing. All I could suggest to anyone reading this, is to go with your gut, and be proactive. It could save your life!

  6. Penny Strongman says:

    My mother in the late 90’s had breast cancer and had a lumpectomy and now has been clean for years. I, in 2008 tiny microscopic spots were found in each breast. On the left, it was determined they were microscopic hyperductal plasia in which they took out all of it. On the right, 2 hospitals have said it is a microscopic benign spot. It is now 2009. At the time when they took out the spots on the left, i asked them to do the right also. Not settled with it is benign. Should i be pursuing this? Thanksfully, they caught mine in time. I am now on a 6 month checkup. I would like to see a study about the mother/daughter relationship if possible and/or a study about us women who have been diagnosed with spots and had them removed or benign items, seeing as we are not technically declared as having cancer. We fall into that category which i think should still be examined. Neither my mom or i are smokers at all. I would truly like to find out and hope that my sister (to this day is still clear, thank god) does not get it. Thank you for all you do.

  7. ria says:

    I’m surviving 2 cancers (thyroid and breast). When I was dx’d with breast cancer Susan Love’s book was the first book I read and it got me through the test trajectory. Thx so much for that!
    I now paint about my experiences. Should you want to take a look, I post my pieces on
    http://painting2cancers.blogspot.com/

  8. I just went in for my memo and told the people ion the offfice about Dr. Love and they pulled it up on the computer when I was in the office. So they all know about it now.

  9. Neera Chandiram says:

    Dear Dr. Susan,
    A friend forwarded to me your information about breast cancer – it is very informative.
    I have a peculiar problem – about six months ago when I was having a massage the masseur pointed out that there was a drop of blood coming out from the nipple of my right breast. We set that aside thinking that it may be a tick from my dogs which got crushed as I felt nothing.
    This happened again after a couple of months and now I was more cautious as the dogs are always brushed and are free of ticks and this had to be something else.
    The blood is dark – almost black. Afew drops come out at a time for a day or so and then nothing.
    Now when the blood is coming out it is accompanied by soreness. I had got an ultrasound done a few days ago just to be sure as to what it is that is causing the bleeding. The ultrasound showed that it is a lump of 115.8 mm and it has made a duct to the nipple from wwwwwwhere it drains out when the puss is formed. His diagnosis is suspected cancer and I should see a surgeon after getting an FNAC done.
    I am 64 years old and have seen many of my friends suffering from cancer and the living death at the time of cimotherapy and radiation. A friend had a smaaaaall lump in her breast and the moment she had the FNAC done the germs spread like crazy and within no time she had both her breasts removed together with the limph nodes. For the last 14 years she is in and out of ICU with reaction to the cancer medicines and the collapse of her lungs.
    Therefore I am not getting an FNAC done but am waiting for the blood to ooze out and then get it tested to be sure.
    In the meantime I am controlling my diet and taking spirolina and mushroom capsule and natural vitamin c and as such feeling as normal as before except for exiety.
    Do let me know if you have a case like mine and any advice you can give.
    I have started Yoga and am active through out the day.
    Hoping to hear from you,
    sincerly
    Neera

  10. Neera Chandiram says:

    Dear Dr. Susan,
    A friend forwarded to me your information about breast cancer – it is very informative.
    I have a peculiar problem – about six months ago when I was having a massage the masseur pointed out that there was a drop of blood coming out from the nipple of my right breast. We set that aside thinking that it may be a tick from my dogs which got crushed as I felt nothing.
    This happened again after a couple of months and now I was more cautious as the dogs are always brushed and are free of ticks and this had to be something else.
    The blood is dark – almost black. Afew drops come out at a time for a day or so and then nothing.
    Now when the blood is coming out it is accompanied by soreness. I had got an ultrasound done a few days ago just to be sure as to what it is that is causing the bleeding. The ultrasound showed that it is a lump of 115.8 mm and it has made a duct to the nipple from where it drains out when the puss is formed. His diagnosis is suspected cancer and I should see a surgeon after getting an FNAC done.
    I am 64 years old and have seen many of my friends suffering from cancer and the living death at the time of cimotherapy and radiation. A friend had a small lump in her breast and the moment she had the FNAC done the germs spread like crazy and within no time she had both her breasts removed together with the limph nodes. For the last 14 years she is in and out of ICU with reaction to the cancer medicines and the collapse of her lungs.
    Therefore I am not getting an FNAC done but am waiting for the blood to ooze out and then get it tested to be sure.
    In the meantime I am controlling my diet and taking spirolina and mushroom capsule and natural vitamin c and as such feeling as normal as before except for enxiety.
    Do let me know if you have a case like mine and any advice you can give.
    I have started Yoga and am active through out the day.
    Hoping to hear from you,
    sincerly
    Neera

  11. Raymon says:

    Triple Negative Breast Cancer

    I’m 45, married mother of two and grandmother of five. I love to sing, read and write peotry. We discovered a lump in my right breast on Jan 14th. Dr. called me saying there was a note at the bottom of my x-ray ‘abnormalilty, moderate concern, biospy needed. Was sent to a breast center for a consultation and the Dr. reviewed my x-rays came in and told me I had breast cancer and that she would be doing the biospy that day (Jan. 23rd). I was diagnosed with Invasive Ductal Carcinoma, a common form of breast cancer for most women. After sugery and further testing I learned my cancer is rare and referred to as Triple Negaitve Breast Cancer. More women are being diagnosed and yet, there is still very little information or research available.
    I keep a pictorial log of how things are going at http://www.myspace.com/bessix
    Below, I’ve included a brief explanation and for more information you can also visit http://www.tnbcfoundation org/index html

    Understanding Triple Negative Cancer

    Subtypes of breast cancer are generally diagnosed based upon the presence, or lack of, three “receptors” known to fuel most breast cancers: estrogen receptors, progesterone receptors and human epidermal growth factor receptor 2 (HER2) The most successful treatments for breast cancer target these receptors.

    Unfortunately, none of these receptors are found in women with triple negative breast cancer. In other words, a triple negative breast cancer diagnosis means that the offending tumor is estrogen receptor-negative, progesterone receptor-negative, and HER2-negative, thus giving rise to the name “triple negative breast cancer.” On a positive note, this type of breast cancer is typically responsive to chemotherapy. Because of its triple negative status, however, triple negat..ive tumors generally do not respond to receptor-targeted treatments. Depending on the stage of its diagnosis, triple negative breast cancer can be parti..cularly aggressive, and more likely to recur than other subtypes of breast cancer.

    One thing about triple negative is the tumor does tend to grow fast. It is an aggressive cancer, this is why the chemo generally works so well. Chemo is designed to kill fast growing cells. In addition, that is why your hair comes out, as they are fast growing cells. When we make it to the 2-year mark, chance for recurrence drops dramatically. When we make it to the 5-year mark, we are at the same level with the positives who have taken tamoxifen for five years. After the 5-year mark, we are back in the normal population of women who have the 1in 8 chance of having breast cancer.According to the researchers, not one has seen a recurrence in Triple Negative women who have made it to the 8-year mark

  12. Gloria says:

    I am hoping that this posting will help get the word out about invasive lobular cancer. I am 52 years old and was diagnosed with lobular breast cancer in January. I actually have 3 cancerous areas in my left breast, one the size of a golf ball and the other pea size. None of these tumors were identifiable by mammogram, only through ultrasound and by MRI.

    Looking back, I had identified the larger tumor through self exam in May/June 2008 but I had a clean mammogram after the discovery. I was lulled into a false sense of security that nothing was wrong with me. By December, the tumor had grown and I knew something was wrong. That is when ultrasound and MRI was done and found this and the other two tumors.

    I have told my story to many of my friends and colleagues and all were shocked that a mammogram would be clean even though they had large cancerous tumors. In my reading, I have learned that lobular cancer is difficult to identify in a mammogram and almost impossible to find for someone like me with dense breasts.

    Please let women know this. As I said above, all women who I have talked to had no idea this could happen to them. I am now in the midst of pre-operative chemotherapy, and will need a mastectomy and axillary surgery followed by radiation because the cancer spread to my lymph nodes.

    I don’t want to see anyone go through all this because they incorrectly put faith in a false negative mammogram. Please let everyone know that mammograms are not definitive and they must do regular self-exams.

  13. cindy coleman says:

    My twin siste has breast cancer she goes to the other doctor to find out how bad, she has Invasive Lobular Carcinoma.

    Can any one tell me me about this cancer?

  14. As a blog reader, I am always on the lookout for information that are both awesome and helpful to digest and I must say your blog passed my criteria. Thank you so much for the wonderful content you have created! Will be coming back soon!

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