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JenHam

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Reply with quote  #1 
I'm new to this forum and I'm hoping that I'm in the right place to address my concerns.  I was diagnosed with triple negative bc in April 2007 at the age of 37.  My tumor was 3cm, grade 3 and no node involvement.  At the time, I was also diagnosed with ANOTHER tumor, same quadrant of left breast, looked the same (little smaller), but receptors came back 40% ER+.  This tumor was also grade 3.  My oncologist had me do another needle biopsy to verify these findings.  Turns out that my triple negative tumor was 8% ER+, but nonetheless, still triple negative.  I went through 4 dose-dense AC (every 2 weeks), then dose-dense taxol (every 2 weeks).  I had a bilateral mastectomy with immediate reconstruction.  No rads (I wonder if that's ok, but onc said it wasn't necessary).  My path came back that my propyhlactic mastectomy was a good choice as I had extensive atypical hyperplasia.  My path also revealed that I had a complete pathological response to chemo.  I'm currently taking tamoxifen for the ER+ bc.  I wonder if this was the right chemo regimen, as I've read of avastin being an excellent line of defense when hitting this type of cancer initially. 

My concern is the triple negative bc coming back.  My onc could not give me stats because she said there isn't enough data on neoadjuvant therapy and
statistics.  That it's a wait and see, but that I have a very promising prognosis.  That is so vague to me.  I'm a researcher by nature.  My 5 year old son has autism and I have spent the past 3 years looking into every biomedical treatment out there that may have a positive affect on his progress.  It has paid off.  But, there isn't much I can research on triple negative bc.  Everything I read is so dooming. 

Currently, I'm on a low-fat diet, eat only grass-fed meat, organic fruits and vegetables and 2 oz of wheatgrass juice.  My supplements include, D3 4000 IU, Vitamin C 1000mg, selenium, MSM, green tea (catechins 480mg), COQ10 400mg and melatonin 20mg.  As well as iodine supplements. 

What I'm hoping to gain from this is support, that I'm not alone in feeling these fears and what is the likelihood that the triple neg will recur?  As well as, what more can I do to prevent a recurrance?  There isn't a day that goes by that I'm not hit with a sudden feeling of fear, like someone has punched me in the stomach.  Is this normal? 

Thank you for any input and support,

Jennifer

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Jen
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Reply with quote  #2 
Hello Jennifer,
I am so glad you found us... I wish it were under better circumstances!

First, let me tell you about me.  I was diagnosed with TN in 2001. It did not come back so let me assure you that it can be beaten. There is so much more info about the disease now then there was seven years ago. Great strides have been made and TN is the hottest research out there.

You sound like you got excellent care. The fact that you had a complete pathological response to the chemo is WONDERFUL. That is what is so great about neo-adjuvant chemo- you get to see if it worked or not!

The things you are doing now to remain disease free are all good. The low fat diet is very important in preventing TN. You should also sprinkle ground flax seeds on your cereal in the morning. Start off with about 2 tablespoons and work up to about 4.  TNBC has an overabundance of epidermal growth factor receptors (EGFR).  The lingans in the flaxseeds help to reduce EGRF.
It is also great you are on vitamin D and the green tea. I do not know of the benefits of iodine. What does it do?

One thing I would note is that you should try to reduce your meat intake. Study after study has shown that a diet high in vegetables and fruit helps reduce recurrence. In fact,  the latest oncology meeting in San Antonio released another study about it. Muscle meats have shown to increase breast cancer risk.
Cutting out as much meat as you can would be a good thing.

Another wonderful thing that can reduce your chance of recurrence is exercise.
A study last year showed that if you exercise at least 3-4 times a week you can reduce your risk by as much as 50%.

I was diagnosed again six years later in the opposite breast with what is known as a new primary- meaning it had nothing at all to do with the first one. And that cancer was ER+. So I am on Lupron and Femara now.

I hope this helps you a bit. You are on the right track. You had a complete pathological response to your chemo... you are doing all the right things.... I think your future looks very bright!

Hugs,
g


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JenHam

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Reply with quote  #3 
Thank you G for responding to my post.  I certainly don't feel so alone when hearing of another survivor who had BOTH ER+ and TNBC.  I was the first my onc had seen and she's at a large hospital in Boston (Mass General).  I'm so sorry to hear that you had a new primary.  What is Lupron and Femara?  I'm wondering if it's something that will help me in keeping the ER+ from recurring. 

As for the meat....my deep down instinct has told me to give it up.  I just haven't been able to do it.  I think it will be my New Year's resolution.  If I can do all I've done and am doing to fight bc, I can give up meat. 

Thanks for the information about flaxseeds.  I didn't mention that I make a shake everyday in which I ground fresh flaxseeds in.  I only have two tablespoons, but will add two more.  I had originally tried to do the Budwig diet, but after a couple of months gave that up, but kept the shake I had made up.  It's made with berries, coconut water, fresh squeezed orange juice, spinach, cottage cheese, flax oil and flaxseeds and a splash of aloe vera juice.  Lately, I've been adding pomegranate juice since I've been reading that it's the new super food.  It's actually quite tasty and filling.  What kind of cereal do you eat and do you use sugar?  This is where I get stuck in a rut.  I end up eating the same thing everyday because I don't know what to eat. 

The iodine was something I started about 10 months ago.  I read something on a website 'breast cancer choices' and then did some googling.  I asked my alternative doctor what she thought and she said it could only be beneficial.  It's supposed to promote healthy breasts, which I'm not sure helps me much since I don't have breast tissue anymore.  But, I'm going to continue taking it since I've read that most people in America are iodine deficient.  I feel like I'm constantly trying to find the right combination of supplements. 

I do enjoy going to the gym a few times a week.  It's my "getaway".  I always feel so much more energized and get a sense of well-being after working out.  I should spend more time walking though. 

I'm still looking for what my risk of recurrance is.  Do you know of any research that discusses neo-adjuvant chemo and pathological complete response and risk of recurrance for tnbc?  I guess what scares me is hearing that there's a high recurrance rate which doesn't really say what that rate is and the fact that if I have a recurrance, I would most likey be stage 4 since I've had mastectomies. 

Also, have you heard of that vaccine for tnbc?  I saw a news program that said that there are clinical trials for it and it looks very promising for long term survival.  I would certainly be interested in that.  In the meantime, I hope to just stay cancer free and enjoy each day without any fear. 

Jen



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Jen
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Reply with quote  #4 
Dear Jen,
 
Your post has me spinning...
 
You are so young, and with the stresses of life, in general, and two kinds of cancer are enough to make anyone feel "stressed out".  To cap it off, you are caring for a beautiful child with Autism.  Now, that makes me wonder about environmental issues; personally, I lived in a farming community, after going to school for years, teaching there, and exposed to many heavy metal chemicals.  I can't help but wonder how those chemicals affected my physiology.  After three miscarriages, life never seemed right.  Then, after years of complaining about a pain in my left breast, and always being told I had Dense Breast Tissue...I finally found the lump that was wrapped in a bundle of nerves and sitting on a nerve, causing the original pain; and one day, I was always checking to see if there was a lump, it finally was visible. 
 
There are cysts, nodules, and lesions throughout my breasts.  I asked for MRI's, and a Bi-lateral with the idea, any possible cancer would be gone.  The surgeon was a real "savior of the breast", guy.  He refused to give me a bi-lateral.  So, being the holiday season, I wanted the thing out, now.  That was three years ago.  I have since transferred my care to a new surgeon and oncologist.  They seem somewhat lackadaisical about my care, as though I've got nothing to worry about.
 
The original surgeon was not honest with me.  He left out a lot of information, such as the tumor's invasion of the circulatory cells and the fact that there was some HER positive, #1, present.  That means nothing, I gathered, and I am a Triple Negative Cancer with a Basal Cell Subtype.  News to me ...the surgeon never mentioned Basal Cell Subtype. i also was negative for Sentinal Node Biopsy, meaning there was no indication of cancer invasion present in the lymph nodes.
 
He never discussed the presence of micro-cells found in the blood surrounding the tumor.  It still bugs me.  Like you, I feel like I got sucker-punched.

He also was very short with my questions.  I have since learned that the insurance and the hospital have been battling over many issues since before my diagnosis. We should all pay attention to the status of our Physicians and what the relationship is between our ability to cover the bill for proper care.  Life or Death, so what.  It ultimately lies with the Insurance Company, and if the Doctor isn't getting paid his/her entire amount; it becomes a game of cat and mouse. 
 
It sounds to me like you will be a successful survivor.  You got all the cancer out, you found it early, and you received Adjuvant Chemotherapy. The Oncologists may be saving the Radiation for an Ace up your sleeve should a recurrance happen later in your life.  For now, you might be on the cutting edge for a vacine, and many of the new Research Treatments surfacing every week!  There's some powerful and brilliant minds working in the ranks, and hopefully they will enforce our hope for future treatments. You are also active in finding ways to prevent a recurrence!  I think you will live a long and happy life. 
 
Proud to know you!
 
Love,
Indi
 
HAPPY NEW YEAR, AND MAY 2009 BRING HEALTH, HAPPINESS, AND A BOUNTY OF LOVE, LIFE AND BEAUTY!

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