Letters From Friends – From Susan in WI
I have been getting so many wonderful letters from women and men all over, I wanted to start posting them here. Many share what they are going through, and together we may be able to help each other out. This is a letter from Susan in Wisconsin.
Hello Michele!,
I want you to know I definetly think you did the right thing in getting your surgery. My husband called me from his work the other day and told me to go into your website. At 47 years old, I had been dealing with similar to what you have for the last number of years. I had several biopsies over the last few years and they had all come back negative. One of the last biopsy surgeries resulted in having 1/3 of my left breast removed. That side of my breast stayed tender longer then it should have after surgery. By that same incision area, 6months later, I felt another lump and unfortunately it wasn’t scar tissue. I just knew something wasn’t right. :/ This was a new lump that had formed (in that orignal surgery area) along with several in the other breast. I decided to have a needle biopsy done this time instead having more tissue removed.
We all thought it was again nothing to worry about.
We were wrong. This lump was cancer.
The doctor/surgeon gave me a few options. I could have a lumpectomy, but chances are the cancer would come back and I would have to have radiation (which I found out can scar your skin so bad that you cannot have reconstructive surgery) or have a left side mastectomy and right side prophlastic mastectomy. The mastectomies would give me a 5% chance of the cancer reaoccuring.
Of course I immediatly decided on the mastectomies. I kind of knew this was all going happen. Everyone was surprised on how I handled it, not me…the surgery had to be done. I talked to alot of nurse friends and friends. They shared several experiences with me.
That next Monday (9Aug10), I had the mastectomies/exspander surgery. We were happy to get the news and my surgeon was happy to tell us, that it wasn’t in my lymph nodes. Yay! The tissue from both breasts were then sent in to a another further lab and final tissue results came back yesterday. When my surgeon called I was told the right breast (because of the type of tissue it was) would have turned to cancer.
The left breast tissue showed the cancer up to the margins. So I have to go back in for another surgery. :/ All I could think of is there goes our long awaited family camping vacation (which we all so desperately needed) gone!
After being home with these uncomfortable expanders, I wondered how long the whole process is really going to take.
I now worry about our 20 year old daughter. She started getting a few tumors/cysts at the age of 17 :/. Her biopsies have come back negative, but if they became larger-(because of the type they were) would have turned to cancer.
Thank goodness, our other 15 year old daughter has not yet felt anything suspicious yet.
These stories are probably very similar to alot in which you have heard. You really are courageous and made the right decision in having the preventative, double prophylastic mastectomy surgery.
I am so glad that you have done these videos to help all of us. Why play Russian Roulette? That is what cancer is to me.
If we can prevent it, we must. It is not just about us, but the ones we love.
My husband is my high school sweetheart. We have been thru alot together and plan to have alot more years together. He has been more then wonderful and supportive and all my friends and family have too. 
If people are not, then shame on them! This is reality folks. The surgery is painful, but the pain is worth it. I think that people really do think that it will never happen to them, but then it does. It truly is a fight and it does take courage. It is something that has to be dealt with and not ignored. If caught early enough, treated.
I really think God does have a plan for each of us. Michele, I admire your courage and making the right choice for surgery. With this decision, you have become a encouraging spokesperson for us all! I’m sure others who are watching (or will be) watching your video will feel the same also. I will continue to watch any updates. I am wondering how the tatoo process is done. It’s only been a week since my surgery and I am already to get things back to normal! :/ I only wish things could go faster. :/
Thank you Michele,
Susan Skopek- Germantown Wi.
Hi Susan!
Thank you so much for writing to me! I am so sorry that you have had a rough time of it, and I understand so much about your concern for your daughters. I read an article yesterday about girls hitting puberty younger than ever before, which puts our next generation at an even higher risk for breast cancer. It’s awful.
It’s funny that you mention the tattooing. Up until last night I was pretty certain I would not get nipple reconstruction or tattooing. But now I’m not so sure. I think I’ve just been worn out by all of this, and don’t want to go through another surgery. I also would joke that since the nipples wouldn’t ‘work’ anyway, why get them recreated? But it’s not just about that, it’s about feeling ‘myself’, feeling whatever normal means to me. Did they photograph you before surgery? It was such a funny thing, a few weeks before surgery I had to go in and take what looked like a paint sample card and compare the colors to my nipples, so that we could match the tattoo ink to my natural color. It was funny at the time, then seemed kind of gruesome, now it’s funny again.
I am so happy that you are at a 5% now, I know that is a huge relief. And thank you for sharing your story. You gave me a great idea, actually. I’m going to start posting the emails I get from women like us on my blog, so that others may benefit from what we’ve all gone through. Thank you so much for your time to share with me, it makes such a huge difference.
Lots of love,
Michele
August 10, 2010 at 10:14 pm
wow. what a story!
michele – i am just curious. have you ever heard of FORCE – Facing Our Risk of Cancer Empowered? this site might be a good suggestion for your friend Susan since she has concerns for her daughter about risk. perhaps, Susan and her family would benefit from genetic counseling to assess her and her daughters risk and the proper measures that should be taken in regards to surveillance. it is also has an amazing online support system. i would have been lost with out it.
here is their website: http://www.facingourrisk.org/
i strongly suggest joining the message board. there are hundreds, if not thousands of women just like us who are sharing their stories and helping one another out.
rach
August 10, 2010 at 10:23 pm
Hey Rach! Very funny, I actually just left you a post on your blog and I’m doing a post right now about the Beauty and The Breast website!
I do know about FORCE, follow it closely.
I am on the outside about genetic testing, my surgeons told me that 80 percent of women that get breast cancer don’t test positive or show any genetic markers. That’s huge! Although knowing you have the markers is one step forward, NOT having the markers still means you could develop breast cancer. I try to encourage all women to stay on top of themselves, no matter what. I refused testing, a 40% chance without the test was good enough for me. But we aren’t all the same, and I’m certainly not saying testing is bad!
Thank you so much for writing! I want to tell you that your newest photos are beautiful and that you’re doing great! I also had trouble with some of my last fills, and it passes. You look amazing, and I love what you’re doing!
August 10, 2010 at 10:33 pm
Michelle,
Thank you for posting your videos and website I think it is very helpful and helps others to be hopeful. I was just diagnoised with a duct carcinoma in my right breast. I unlike some have implants. In 2007 I noticed a hard lump around my nipple area and a needle biopsy was done which they said was scar tissue. Well the area got a little bigger and it has taken me 2 yrs to get anyone to pay attention. I had a stereotactic biopsy and it showed the cancer.
My surgery will be December 1, 2010 for a mastectomy w/sentinal Lymph Node BX Latissimus flap reconstruction. I have taken this very well but still have alot of emotions which is normal. I meditate and talk open and honest with my son who is 20. My husband was killed 1994 and it has just been my son and I.. I heard someone say my cancer is a gift from God, in a way it is I actually feel more alive and awake than ever, Weird Huh!..I see things in a different light. Even after all the struggles this happening has opened my eyes even wider. Thank you for your courage and reaching out to everyone. HOPE*****LOVE*******FAITH
November 17, 2010 at 12:18 pm