I have a friend who was diagnosed with breast cancer 27 years ago and has been living with metastasis to the bone for over 14 years. I profiled met her while filming a breast cancer makeover at Lancome, NYC, for BreastCancerSisterhood.com. She continues to be the most positive, uplifting woman I know. When I asked how she continues taking different chemos year after year, she simply said, "I chose to live a life." There's nothing simple about that. She is pure inspiration. My inspiration. She is the face of, and role model for every woman who has ever had breast cancer.
Brenda Coffee, CEO
BreastCancerSisterhood.com
The other day, my mother-in-law mailed an article to me from Santa Barbara, CA. She thought that I might be interested in reading about a women who has survived 22 years with Breast Cancer and was told she might have 2 to 3 years to live.
I am a 3 time Breast Cancer survivor. I first found a lump in March of 2001. Went through the traditional treatment. Lumpectomy, partial mastectomy, six months of chemo, 7 weeks of radiation and everything looked good for almost 5 years. My first BC was Infiltrating Lobular in-situ.
Because I ended up having a partial mastetomy, I had a saline implant placed in that breast a year later.
I noticed just before Christmas, Dec/2005, that the same breast had harden and the nipple was inverted and grown in size. Immediately, I thought it was my implant, that maybe it had calcified. I called my Plastic Surgeon, who put the saline implant in, in Dec/2006 and made an appointment. He wasn't there that day but his right hand Assistant was there to examine me. I asked her if she thought I should have an ultra sound or a MRI and she said that she was going to call my Plastic Surgeon downtown clinic and ask. She came back and said that this is routine and all he needed to do is replace the implant.
Three weeks later, I was in surgery and the first thing he said to me is that it was not the implant. I asked him what it was and he said that he took a biopsy and sent it off to pathology but that he thought that it was my tissue calcifing.
Go home and heal and I will see you in two weeks. Within 24 hours the biopsy came back and said that it was not cancer. I thought that I could deal with calcified tissue as long as it was not cancer.
Five days had passed since the surgery and I noticed that this tumor was growing up towards my collar bone. It was so visual. I called my oncologist the next day and was in seeing him that afternoon. Since I was almost a five year survivor, I was only seeing my oncologist, once a year.
He took a look at my chest and said, "OMG". He ordered a ultra sound with a core biposy. You could see the tumor on the screen while the technician was filming it. It was huge. I told my oncologist that my plastic surgeon had taken a biopsy and it came back clean. He said to me that he does not know what area that he took it from. We went right on top of skin to the tumor this time.
I turned out that it was Cancer and the tumor was 19cm X 6.5cm. I felt like I had just been given a death sentence. I had read a lot and heard a lot of stories, but never had I heard of a tumor so large and it had not metasised to the organs.
I did six months of chemo therapy, to shrink the tumor and then had a complete mastectomy with 8 lymph nodes removed. The nodes were clear of cancer, (thank God), but the tumor was cancerous.
This time it was IBC (Inflamatory Breast Cancer). One of the rarest, most aggressive, and deadliest. Not to long ago, only 4% of women survived it for at least 5 years. The problem was and still is that the physicians diagnosis it as a skin inflammation and put these women on antibiotics for three to four months and it grow so fast that it's huge by the time they figure it out.
Again, I went through, yet another six months of chemo, one year of heceptin.
June 22, 2008, I was feeling quite some aching in my lower back. I mentioned it to my doctor and he sent me for a bone scan. What do you know, the cancer has metastis to my bones.
For the last 2 1/2 years I have been having treatment pretty constant, to keep my tumor levels down.
I thank God everyday that I am still alive. It could have been alot worse. I have been battle this ugly disease for over nine years and still going strong.
I want to share with others that are reading my story that there is great hope. Like the commercial I see on TV where the doctor tells the patient that she had 3 months to live because she had cancer. Her second opinion oncologist told her that he did not see anything on her CT scan stamped, (three months to live).
It's all about being your own advocate and being positive.
And live life to it's fullest
Kobe, thank you for sharing your story here. I'm so glad that you followed your instincts and went back to your oncologist to get the proper diagnosis. I'm also an inflammatory breast cancer survivor, so I have some sense of what you went through with that diagnosis. You are absolutely right. There is no time stamp on a biopsy report. Each case is different. Your courage and persistence is a great example to us.
I'm always glad to share my story because I'm passionate about educating people that breast cancer doesn't always start with a lump. The short version is that I was diagnosed with inflammatory breast cancer in April 1998, about ten weeks after pain and tenderness in my right breast warned me that something was wrong. I had chemo, surgery, and radiation ending in January 1999, and I've been well since then. You can find a more detailed version at this link. You can browse some of the other posts I wrote at that time for even more background.
Welcome to this site. I hope you are finding the information and support you need. Let us know how we can help.
WoW, so you read my story and know that I was also diagnosis with IBC. My husband was the one that told my oncologist that he found my exact symptoms on a website of IBC. This was in 2005-2006 and even then the doctors did not know the symptoms. I was told it was my implant and the tumor grew and grew for four months.
I am so happy for you that you have been cancer free for 10 years. Someone is looking out for you. I feel the same way. I know women that had IBC and they are not with us today and their tumor was no where near the size mine was.
I also have read from women that their cancer had spread to the bones and with treatment they are living for years to come.
That's me....
Keep me in your prayers...
Linda, I certainly will keep you in my prayers. One thing to keep in mind with IBC is that tumor size isn't connected with Stage the way it is for other breast cancer types. What makes IBC so deadly is its tendency to sheet and get into the lymph system instead of forming a nice solid tumor that can be surgically removed. So your tumor's huge size doesn't necessarily make your tumor more dangerous. Of course, you know that some of the tumor cells escaped your breast to set up a new home in your bones, but bone mets are very treatable.
You are a courageous woman! My mother died of rectal cancer 15 years ago.....I picked up an old magazine and saw this woman, Katherine Russell Rich. I Googled her a few minutes ago, thinking that by the sound of the article she had written in 1996; she was not alive today. What a pleasant surprise.
You are also one of those peole whose odds are good. My mom did not fare well, but I believe her reason was because she wasn't strong enough to tolerate the hideous treatments you are forced to endure. She had health problems to begin with: also depression, multiple chemical senitivites, Candida, however even she lasted for the entire 5 years, which was the average for her. When she decided that she wanted to live, she pushed the bar.
All you women have that special Courage. Not everyone does survive. I think it's important to understand this. Just because you don't do well, doesn't mean you're not trying. When a nurse told me my mother didn't have the "will to live" I about leaped out of my chair at her. How dare she sit in judgement? Did this nurse spend most of her childhood in hospitals? My mother did. She made strives on her own scale. Please, anyone whose a loved one or in the medical community: do not tell a patient that they are not trying hard enough. for some people the treatments are so toxic....and then they get that thrown in their face!
You and all the women out there....whether you have the special blessings that Katherine has been given or not....you are a warrior!!!
Own it, and know you're all special, and because of you and what you're enduring; your granddaughter's will not have to.
Tammy, thank you for sharing your perspective as a daughter. You are so right that no one should judge another person's response to cancer. One of my pet peeves is the idea that our attitude controls our survival. Our attitude can make our lives (however long or short they are) happier, but there are plenty of people with a strong will to live and an optimistic outlook who die anyway. Here's a link to an article I wrote on the topic. I'm glad that your mother was able to make it five years despite the complications of her health history that made cancer treatments difficult, and I'm glad that you see her as a whole person who did the best she could against enormous obstacles.
I am a 60 year old woman completing my 4th year with metastatic breast cancer and my 25th year from when I was first diagnosed and had a mastectomy. Don't we all wish if we had a positive attitude we would live to be 100. I do belive that we need to continue to live our lives the best we can. People often say I have done so well because of my positive attitude. I too have known many people with positive attitudes who have live for a very short time. Don't get me wrong there is nothing wrong with a positive attitude. Behind our positive attitude we worry, cry, and are angry at times that we have to deal with a journy we don't want to be on. My father was diagnosed with colon cancer many years ago and lived only 3 months. He was the most positive person I have ever met. God bless us all, those who only live a few years and those of us who live for many years. We are all survivors who want to live long productive lives.
Sue in VA
Thank you for sharing your thoughts. I'm sure that your 25 years as a cancer survivor have been filled with highs and lows, and that your positive attitude has helped you cope along the way. But as your experience with your father shows, it's important not to blame the victim when cancer claims a life all too early.
Every adult needs to have a will and a health care proxy, but unfortunately, most of us procrastinate on these. You will rest easier when you know that your possessions will go where you want them and that your wishes for health care will be taken care of if you are not able to state them for yourself. The details for how this needs to be done varies from state to state. Often the hospital or doctor's office can give you the papers for the health care proxy (sometimes called a "living will"). I will admit that I got overwhelmed with all the decisions to make on the health care proxy and ended up doing nothing, so I give better advice than I follow. Once you get the paperwork out of the way, you can concentrate on staying as healthy as possible for as long as possible.
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August 18, 1978 after undergoing a modified radical mastectomy of my left breast, my surgeon came in and told me that I had what appeared to be 3 malignant tumors and that he had removed 15 lymph nodes from my axilla and that 8 of them were positive. He said I probably had 2 to 5 years to live. As a personal friend, he suggested that I begin to make any changes to my Will that needed to be donr and to take care of all of my personal things that needed attention.
Inasmuch as I only had a couple of years left, I determined I would not want to spend that time with only "half a body" and I opted to go back for surgery in two weeks for him to place an implant in the vacant space that formerly held my breast, and for a total hysterectomy, removing my ovaries so that I no longer would have estrogen in the event I had estrogen positive cancer. Two weeks later it was determined that my cancer was estrogen positive. I was 47 years old.
I returned to surgery one year later and had my other breast removed, "just in case," even though I did not have any "lumps." There were no tumors found in my right breast and I immediately had it rebuilt also.
In 1992, 14 years later I felt a lump on my left chest wall and went in to have it checked and the surgeon chose to remove it along with a suspicious lymph node in my left clavicular area. Both areas were found to be cancer positive. A recurrance at 61. This time since I had no ovaries to give, I opted for radiation (left chest and left clavicular area) and for chemo therapy which lasted 9 months (every other Thursday I had an IV of adriamycin.) They told me I probably wouldn't live more than another 5 years. I worked through all of the raduatuib and chemo therapy, laughed when I lost my hair as I didn't have to curl it anymore on a daily basis, and when everything was finished I had surgery to take out my silicone implants and replace them with saline implants. The second round of cancer was finished and their were no little tumors lurking under the implants.
I am now 79 years old and I am still cancer free. As each year passes, on August 18th, I send a note to my surgeon, now retired, and to my oncologist, now retired, and wish them a happy new year and tell them I will be in touch with them again "next year." And I am positive I shall be!
Brilliant.. what a great survivor you are, and an example of courage.
I am 64, currently in chemo after mastectomy and all except one lymph node on that side affected. I am told Ihave a 50/50 chance of recurrence in the next 2 years, which makes me think it would be a good idea to get my complicated life simplified and organised.. however this would be such a change of personality and life style that Im not sure i can focus on that, rather than just continuing to get the most out of life that I can, and focus on the 50/50 chance of NOT getting a recurrence till much later. There is so much life to be lived.
It is great to hear you are still doing just that.
What a wonderful story! It's clear that one element in your survival is taking control of your health care decisions. I wish you many more years of health and happiness.
Mira, if there are some details that need to be taken care of just in case things don't go well like making sure your paperwork is up to date, this is a good time to do it. Then you can focus on living your life to the fullest in the way that suits you best. And these days, even a recurrence doesn't mean that you can continue to live with a good quality of life.
I too am a Stage IV breast cancer to the bones mets. women. I am ready to pass the 3 years range. After finishing my first round of chemo, I was told last month that my cancer markers are in the "normal" stage...whatever normal is. I continue to stay focused and positive and truly believe that I will make it past 5, 10+ ....years. Your message helps me to continue my life and know that there is hope. The worst thing during all of this is what my Dr. told me 2-3 years. I asked if there was anything that could help and she said no.
If I could change the world Drs. would quit saying "nothing we can do," and instead say "there are a few surviors of many years." Anything to give you a glimmer of hope so you go on and keep putting one foot in front of the other and find your inner strength, because you have to remain positive!
I'm thrilled to hear that you are doing so well. Rich's 17-year survival is the longest I've read about, but I know several people on a mailing list I belong to who have hit the ten-year mark, and some of them have no detectable cancer. On our list, the bone and skin mets Stage IV people seem to do the best, but we've also had people with other kinds of mets see reduction and/or stabilization of their tumors. I agree that doctors need to balance the bad news that most Stage IV people will live less than five years with the good news that some will far exceed it. That's especially true because research keeps finding new drugs and treatment methods. I'm sending hugs and best wishes for continued successful treatment to you.
Hearing positive stories of other Stage IV thrivers keeps us going. Thank you for this means of communication, and PJ, best wishes to you and all you do for so many.
Hi Phillis,
My Name is Debi, and I am a 1 year stage 4 breast cancer survivor.. and I just wanted to pass on to you. the story of Rita Ardetti.. who was also stage 4.. for 30 yrs.. and just passed away Dec 09.... you can look her up on google.... this is a positive story..
Just thought I would pass this on to you... Love Debi
What a wonderful story! I love to hear about long-term survivors. Thank you for sharing.
It's great that you are moving on with your life and planning a wonderful future in your new house. Sometimes we just need to take those risks and expect that everything will work out.