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OCTOBER 9, 2008 1:26AM

How I found out I had cancer

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Since I was diagnosed with breast cancer, I’ve fielded a lot of questions about it. One of the most frequent is, “How was your cancer found? Did you have a lump?”

I understand why people ask. They are hoping for an answer that will reassure them. She found a lump. I don’t have a lump, so I don’t have cancer.

 I do this; other women with breast cancer do this. We quiz each other on the particulars of our cancer. “What stage was your cancer?” “How large was the tumor?” If your tumor was larger than mine and you are fine now, then I’ll be fine, won’t I? There is still too much uncertainty when it comes to cancer. When tea leaves are our only guide, we all peer into our saucers.

 Did I find a lump? No. Not a new one, that is. The first time I found a lump was more than 15 years ago. I was in my early thirties, and it terrified me. Dense breast tissue rendered a mammogram almost useless. A cancer surgeon performed a biopsy. The diagnosis? Fibrocystic tissue in my breasts. In lay terms, they were lumpy.

My lumpy breasts meant self exams were not going to be particularly effective. I knew that if I was ever diagnosed with breast cancer, it would be found through a mammogram.

That is how it happened. Something suspicious on a routine mammogram. A follow-up sonogram, then a biopsy. Then a few (long) days later, the diagnosis.

Here’s the ironic part. There was no lump. Or rather, there were lumps in my breasts but they were still not cancerous. I was diagnosed with an unusual form of breast cancer that does not form lumps. Luckily it does have a characteristic signature on a mammogram. That was what the radiologist saw. That was what set in motion the tests and procedures that led to my diagnosis and treatment.

That was three years ago. If I were not having regular mammograms, the cancer would almost certainly have advanced to an incurable stage by now. This sneaky cancer would have found its way to my lungs, my brain, or my bones.

Not all cancers are as readily found at a curable stage. Anyone diagnosed with pancreatic cancer would give anything to have had the opportunity to know before it was too late.

I had my mammogram today. (I still have one breast—and a higher than average cancer risk.) The results were just what I wanted to hear. No cancer. But if the news had not been good, at least I would have given myself the best possible chance to beat it by catching it early.

October is National Breast Cancer Awareness Month. If you are a woman over 40 and you haven’t had a mammogram in a year or more, this is a great time to get one. If you are a man, encourage the women in your life to get screened for breast cancer. And if you can afford it, make a donation to one of the organizations that provides free or low-cost mammograms to women who cannot afford them.

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Women of all ages should also check out the Love Avon Army of Women at www.armyofwomen.com.
Susan,

Thank you for your courage, your generosity, and your infectious joie de vivre.

Many suns, moons, and vistas to you.
Thanks for sharing this. I'm a cancer survivor myself and wish you many, many years of cancer free life.
A great post and a timely reminder, Susan. Thanks....
As I understand it, there have been a lot of advances in the quality of imaging, such a digital mammography, that really have saved lives. Best wishes for continued good health, and thanks for spreading the word on breast cancer awareness month!
I thought there was always a lump.
And I am over 40.
Thank you.
Thanks Susan. This is an important post and I appreciate you sharing what I'm sure has been a difficult journey. Although I have no family history of breast cancer, I've done mammograms since the age of 35.
Thank you Susan, for your helpful post. Bless you for helping and reminding others.

Women should know that, if they have no insurance, there are local programs to take advantage of for free mammograms. Here is a link where the rest of us can click once a day to provide sponsored free mammograms:

http://www.thebreastcancersite.com/clickToGive/home.faces?siteId=2

rated and applauded
Thank you everyone for your kind support and good wishes. And I send out a virtual version of a "solidarity handshake" to my fellow cancer survivors.

ePriddy, that's exactly why I think it is good to let people know how they found my cancer. There is so much that people don't know about cancer and that lack of information can be dangerous. Now you go get a mammogram, please. You are way too valuable to the world (and me, if I may be selfish) to take any chances with your health.

o'stephanie, thank you for the reminder about the breast cancer site. (I'm going to see if I can embed the link her to make it as easy as possible to click on it.) I was suspicious the first time I saw this, but from everything I can tell it is legitimate. Go click it.
I also did not find a lump. Instead I had an inverted nipple and did not find it interesting or alarming. A biologist friend insisted that I go for a mammogram since it might be an indicator of cancer. Unfortunately I did not go when he made the first or later requests. I waited two months. When one has invasive cancer two months is a long time.
Hi Susan: Congrats on your good news. Usually, I have my mammogram in October, but switched over the March. I have my gynecological exams in October. We do need be aware of all cancers! Thanks, Lisa
Susan, thank you for sharing this. I wish my mother had had regular mammograms in her 40's. She didn't, and she was eventually taken away from us when she was only 54, and I a young man of 22.

People, please have regular checkups -- for yourself, and for your loved ones.
Susan, Thank you. In my years involved with Susan G. Komen, I have met cancer survivors as young as 22. PLEASE teach your teen daughters about breast self-examination. If you have a family history of cancer -- not just breast cancer -- your insurance will probably cover mammograms as early as 30. That will be for a screening mammogram, to establish a baseline.

By the way, about family history. EIGHTY PERCENT of women diagnosed with breast cancer have NO FAMILY HISTORY!

One in eight women will be diagnosed with breast cancer at some time in their life. Think of the people you love. Count 8 of them. At least one will be diagnosed with breast cancer.

Susan, I will carry your name with me at the Breast Cancer 3 Day and honor your with other survivors I know.
I didn't know about non-lump cancer, either.

(thumbified 'cuz Da Suze is my hero)
Julie--Thank you for carrying my name on the Three Day. That actually means a great deal to me.

I've lost a number of friends to different kinds of cancer and I find myself wanted to honor them in some way. The various sponsored walks that raise money for cancer research, treatment, or screening are a great way to do that. And believe me, it does mean something to cancer survivors and to the loved ones of people who did not survive cancer.
By the way, I don't know if you were a victim of IBC (inflammatory breast cancer) or not, but this is good information regarding that form:

http://www.cancer.gov/cancertopics/factsheet/sites-types/ibc
Thank you for putting yourself and the information out there. I see Julie has already provided a link to a site for IBC. Both the NIH and the National Cancer Institute sites provide good, if somewhat daunting, information.

Shanti.
My particular form of breast cancer is called invasive lobular carcinoma, ILC. The most common form is IDC, invasive ductal carcinoma. But as several people have commented, there are actually several forms of breast cancer and the rarer ones don't follow the expected pattern. IBC, inflammatory breast cancer, normally first presents as a redness and thickening of the skin of the breast.

Bottom line, if you are having regular gynecological appointments (which women should be doing), your physician should also be examining your breasts. If he/she isn't, find another one who is well versed in breast health.

And make sure you learn all you can. It is better to know than to be at risk because of ignorance.
I turned 33 in August, and I had my first mammogram April 11, 2008. There is a lump in my right breast and the doctor called it some type of tissue (it begins with an "A"). I am having my follow-up visit this Monday, October 13, 2008. I have history of cancer in my family (all types) and this was very important for me to do.

It is my prayer that women of all ages and socieoeconomic status, get checked.
Thanks for sharing this.
Karen, I know this has to be a terrifying and frustrating situation for you. I sincerely hope you don't feel that anything you did--or did not do--contributed to the problem. It sounds to me like you did do all you could.

In my opinion, the really good doctors listen when their patients are adamant that something is wrong. Too often, health care professionals aren't willing to trust our intuition.

That said, I know enough about the unpredictability of cancer to know that it sometimes doesn't really matter if you find it now or a few months from now. People who were given just a few months to live have outlived their prognosis by decades, and others have unexpectedly found the cancer has spread.
Scary but I'm glad you had the mammogram. Fibrocystic here too until I had my babies and then it went away, strange.

Three years, here's to 100 more! Huge hugs and love your way.
I am coming up on my 5th aniversary since radiation and wanted to let you know how important your piece is. Stay healthy!
Thank you P_F! I know you have your own health issues so I am really glad the babies banished your lumps! You didn't need to have that misery as well.

Congratulations Roger and all the other survivors. It really drives home that all of us will likely be affected by cancer at some point, whether we get it or someone we care about does.
good post, good you got good news!
Thank you Susan for your wonderful sharing, and your post is serendipitous too- I am scheduled for a routine sonogram tomorrow morning. Mammograms don't work for me either due to dense breast tissue. Continued health to you and all who have visited here.
I almost didn't read your post, Susan. Cancer is that scary (or I am that superstitious) that it is possible to imagine "catching" it simply by reading someone's story.

Thanks for sharing your story. Here's to a continuing good prognosis for you!
I know how you feel, Rich ;) Thanks for setting your fears aside and stopping by.
Thanks for encouraging women to be proactive. One of my closest friends hates having mammograms, so every year we go together and go out for lunch afterward. That makes it an event to look forward to instead of one to dread. My older son participates in Volley for the Cure or Athletes for the Cure every year as his small effort to help. Good luck! Paws up!
I am scared a little. Have had my Mammograms religiously every year. Had a lumpectomy in 1990 was a cyst. Now 2 weeks ago they the radiologist sent me a letter saying there is a finding. I have never gotten a letter and I am scared. Called and going for followup mammo and ultra sound due to dense mass on left breast. I have no lumps or symptoms, no pain no nothing. Should I be so concerned or am I over reacting? Your a brave and sourageous woman I am proud to be associated with you. Thanks so much. Tammy
DogWoman--that's really a great idea. We should all try to reach out to other women who might feel better having a mammo "partner" and turning it into something more pleasant. Just offering to accompany someone to their mammo appointment might help if they are fearful of finding out something is wrong. Most people don't want to be alone when they get that kind of news.

Tammy--of course you are scared! But you are doing exactly what you should do in getting the follow up tests. There is a very real possibility that it is nothing, and you can be giddy with relief when you learn that.

I can speak from my own experience about learning I had cancer. My first thought was, "OK, how do we get rid of it?" They are learning more about breast cancer every day and there are so many tools to treat it now. I won't say I enjoyed the treatments, but like many women, I did feel good knowing that I was whacking those cancer cells.

I also should point out, Tammy, that having regular mammograms means you have done exactly what I did and if there is cancer, you will have caught it early. And that means you can do what I do--figure out what you want to be doing when you are in your 90s!
Hi Susan
There has been a lot of talk in the news lately about dichloroacetate (google it) to treat breast cancer, some people are even using it as a kind of maintenance treatment to prevent cancer from returning. Have you heard anything about this?
Hi Sarah2,

There is absolutely no reason to think that DCA is effective in treating breast cancer. I've seen ads and those misleading chain emails that claim it can cure any type of cancer, and that alone tells me it is being promoted by snake oil salesmen.

There is no single thing called "cancer." There are many different cancers that originate in different areas of the body and grow through different processes and mechanisms. Research into DCA for colon cancer found that it might actually make the cancer worse. DCA can also damage the liver.

More and more women are surviving breast cancer thanks to conventional, standard treatments. Unfortunately, too many people are still dying because they decided to try an "alternative" approach.