First of all let me introduce myself. My name is Scott Secord. I am a social worker and the manager of the Breast Cancer Survivorship Program. I wanted to welcome you all to this new website. Our aim is to try and help link breast cancer survivors to one another virtually. The purpose of the discussion forum section is to facilitate conversation and dialogue that is focused on particular themes. Presently there are three topics areas. In future discussion topics will be generated based the topics survivors talk about. The theme I am focused on today is Living with Cancer. This is a big area worthy of great discussion given the large numbers of women and yes some men I have seen it is amazing how different everyone’s experience is when it comes to detection, diagnosis and treatment. Some find cancer themselves or by accident, there is a lot mystery over when screening is allusive and doesn’t detect cancer in the breast and confusion over why treatments are so different. No two cancers are the same, no two survivors are exactly alike but they share a similar journey. One thing I do know is that breast survivors learn a great deal from one another often faster than their treatment team can respond. There is so much to learn and understand. What was your journey like? What helped you in your journey? How are you managing?

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Hi my name is Buffy and I'm a survivor also. Diagnosed in Nov 05 a 3.5 cm mass, a mastectomy and 19 lymphnodes of which 17 were malignant...and had surgery Dec 19th 06. Chemo followed AC then Taxol...for the winter months, then came summer and radiation followed. Radiation was a breeze compared to the chemo for me, I had lots of 'down time' where I couldn't get out of bed, no nausea though, thank God.
I had a good support group from my church family and friends, you sure find out who your friends are! You DO have to be your own advocate...my doctor does NOT believe in mammograms, he told me they would only scare me! thank God I didn't listen and asked to have one anyway, when he felt the knuckle like lumps on my breast and seen the shrinking.....he said, well 'maybe' you should.........yes indeed I should and did have a mammogram, ultra sound and biopsys 4. Even if you feel something your not sure of....GO!!!!!!!!! getting checked can save your life and time....make your diagnosis less invasive.
But, I'm telling the wrong people here eh! You have all been thru it.......my daughter is now having regular mammograms with the same dr, she has to fight to get them at 42.
Taxol left me with neuropathy feet, don't walk too good and couldn't walk when taking radiation in Kingston which sucked big time.
I recently had a bone scan which the family dr said was now a recurrance of bone cancer......then I went to the Oncologist, this time a CTScan which showed NOTHING....so do get another opinion, don't always take the firts opinion....your oncologist knows best I believe, I did have much prayer too which I know got me where I am today,
God bless you all in your journey and may we all be well..........

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Hi skybuf, what an experience you have had. Re our daughter's getting mammograms, the recommended age is one decade earlier than the mother's first breast cancer. I had my first in my 40's so both my girls have had mammograms at 30. However, one of the problems with mammograms is the densitiy of young women's breasts so some of the newer technologies may be better, eg, MRI.
They are both so alerted to their breasts that they are constantly feeling for lumps. Best wishes, Gracie

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Thanks for responding Scott.....yes I live in a small village outside TO and we need more doctors like lots of towns do. So we don't get any choices now as to whom we see. We do need to be our own advocates, thank God for sites like this one where our experience comes together and helps with decision making and helps with resources.....keep it up!

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Hi Buffy...I hear you on the Taxol feet....ugh!!! I used to walk 3-4 miles a day, 3 times a week and since tx, I find that I just cannot do that. First I thought it was just lack of energy from tx, but as I am nearing the 2 year point from dx, I know it is the taxol. Some days are better than others. Mostly I find that my feet burn on the soles which drives me nuts, but we learn to live witih the changes cancer and it's treatment have given us.

I started swimming today...I tried belly dancing and like it but the class wasn't "vigorous" enough for me. I'm hoping that lane swimming will provide some much needed exercise so I can lose the chemo pounds and feel like I am taking control again.

And I thank you for repeating something that is so important with cancer...second opinion. As you yourself have found...one test can say one thing, another test something different. And we need to feel comfortable not only with the people administering these tests but the providers we have who read the tests and direct our treatment. Being our own advocate is #1.

Best to you with your feet and keeping up the strong fight!
Sherry

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I am now into my second year as a BC survivor. I have scheduled my regular follow-up appts over the next few weeks. I was diagnosed with Stage 1 cancer and had to have radiation and 5 years of Arimidex. This experience definitely made me take a hard look at my life and change it for the better. Started at the gym and eating healthy. This year I've decided to start my own business. Not bad for someone close to 60. That is only a number to me as I feel much younger. There are times when I get a bit depressed when I hear from people I know suffering recurrences. I keep asking myself if I will be the next unlucky one. Most of the time I'm able to change my thoughts to something more pleasant. Try to think of something more positive. It definitely does help when I do this and I definitely recommend the power of positive thinking.

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What a great attitude! Thanks for sharing.

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Hello!

I am 29 years old, and after giving birth to my 12 week old son, Michael, I was diagnosed with stage II breast cancer. When I first found the lump, my obstetrician thought it was a clogged milk duct but told me to keep an eye on it. Once my milk dried up, the lump was still there so I booked an appointment with my family doctor. He told me it was a cyst. Fortunately, I did not believe him. This was a hard lump that was not 'cyst-like'. So I got a second opinion and was scheduled for a biopsy the next day. I was diagnosed one week later. It's been challenging going through chemo with a baby at home. Luckily I have a loving husband who was able to take off work to look after me and the baby. I'm also finding it difficult to cope with my diabetes - I'm type 1 (juvenile) and the steroids interfere with my blood sugars. Other than a few minor complications, I feel great and fortunate to have such a positive diagnosis. The cancer did not spread to my lymphnodes. Every day is a new challenge, and I love watching my son grow (they grow so fast!!!). I just want to say I think its great to have websites like this so people can reach out to one another - and if anyone thinks they relate well with my story, I'd be happy to hear from you!

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Hello

My name is Raija. I am also a young survivor of breast cancer. I also have a two year old daughter. Exactly 10 day before my 30th birthday ( Jan/06) I was diagnosed with breast cancer. I found the lump in July/05 just after my grandfather's funeral. It was the size of a pea and by November/05 it was literally popping out of my chest. I was told that it to was a cyst and that they would monitor it. Finally I couldn't stand looking at the now very visable lump forming on my chest and I insisted that it be removed. I found out I had invasive ductal carcinoma with 1 of 17 nodes testing positive. My doctor tells me my cancer is possibly linked to environmental reasons. I joined the local Breast Health Coalition to bring awareness into the community and that young teens should be taught about breast cancer and self-examinations early. I'm working on trying to get into the high school system to speak to young girls about doing the self exams and to be very vigilant on getting abnormalities checked out right away. Breast cancer is affecting more and more young women and I believe doctors have to change their thought process when young women come into their offices with a concern no matter what the odds of someone our age getting breast cancer. I'm also trying to be proactive in eliminating toxins like formeldhyde and other known carciogens from our surroundings. It's in our makeup, in our cleaning products - it's everywhere. Every little bit adds up!!!!!!!!!!
I also have a wonderful husband who has stayed by my side through every 6 hour session of chemo and other procedures. We are very lucky women to have such wonderful supportive families. My struggle now is my emotional state. It's starting to hit me as I was unable in the beginning to cry or be angry or any other emotion that needs to be worked out as I was never alone long enough to go through this.
I just started counseling, which took me half a day walking around the house with the phone in my hand to get the nerve to call and make an appointment. But I'm glad I did. I noticed I was taking my anger out on the ones I loved by yelling all the time and they don't deserve it.

I look forward to chat with others as I have a raging fire inside me that if we all get together and make our voices heard maybe change is in the near future.

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Hi Pinkhope. Yes you have a lot of hope and so many things have changed in breast cancer treatment that I know your outcome will be so much better because it is 2006. You are certainly fortunate that you have been your own advocate, and knew your own body. SO many times our physicians use what has been statistically determined to be the outcome of symptoms that they don't actually think about the unusual cases, and we are some of them. When I had my first cancer 12 years ago, Dr. Susan Love talked about the only methods of treatment being cutting, burning and poisoning, but now there are so many more treatments that are targeted therapies that we have such a better chance of surviving. The research money that we all have raised has made a difference. Keep you heart strong, depend on your friends and family, and continue to be your own best advocate. It works. And lets let our government know that there is not enough treatment, care and follow-up available for what is a devastating affront to our existence both physically and emotionally. We are sister survivors

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