Category Archives: mastectomy

100 things to share about cancer in honor of my 100th blog post.

In honor of my 100th blog post, I’ve started a list of 100 things to share about cancer. I actually thought a lot about this list.  I didn’t want to bore with you with lots of useless facts.  Haven’t found 100 organizations that I love and while I’ve met lots of cool people through my journey, I can’t think of 100 to highlight.  This is a combination list and includes really cool organization, some interesting facts and statistics, great doctors, some cool people I’ve met along the way and anything else random I can share with you. I hope you find some of the links and facts within this post helpful.  Please note: I am not a doctor–just a survivor involved in the breast cancer world.   

I’ll start with really cool organizations. Some I know pretty intimately and some I just know on the surface. Regardless, they are all worth checking out and have some pretty great people involved.

BRCA and other hereditary cancer facts

  • About 10-15% of cancers are hereditary.
  • A BRCA mutation can give you up to an 87% lifetime risk of breast cancer.
  • Ashkenazi Jews have a 1 in 40 chance of having a BRCA mutation.
  • The general population has a 1 in 400 chance of having a BRCA mutation.
  • Family history on your father’s side is equally as important as family history on your mother’s side.
  • If you have a family history of breast or ovarian cancer, you should talk with a genetic counselor to assess your risk.
  • Triple negative breast cancer is common among women with a BRCA 1 mutation.
  • Estrogen positive breast cancer is common among women with a BRCA 2 mutation.
  • Men with a BRCA 1 mutation have roughly a 6% lifetime risk of breast cancer.
  • Men with a BRCA 2 mutation have roughly a 7% lifetime risk of breast cancer.
  • Bilateral mastectomy is the best way to avoid breast cancer in women with a BRCA mutation.

Random Breast Cancer facts and tidbits

  • Each year 10,000 women under age 40 are diagnosed with breast cancer.
  • As of 2008, there are 2.5 million women in the US who have survived breast cancer.
  • There will be an estimated 192,000 cases of breast cancer in the United States this year.
  • Inflammatory Breast Cancer is very frequently misdiagnosed. See other less common breast cancer symptoms below.
  • If you feel a lump, it’s best to have it removed or biopsied rather than waiting and seeing.
  • Women under 40 have very dense breasts.
  • Abnormalities in breast tissue are difficult to detect through mammograms when women have dense breasts.
  • Monthly self breast exams are very important.
  • There are many types of breast cancers.
  • Breast cancers in women under 40 tend to be more aggressive and have a worse prognosis.
  • There are other ways to cut your risks of breast cancer if you are at high risk — like the drug Tamoxifen.
  • Susan G. Komen spent 100 million dollars on breast cancer research in 2008.
  • Every major advancement in breast cancer research has been touched by a Susan G. Komen grant.
  • Women can get breast cancer in their 20s and often these cancers go undiagnosed.
  • Doctors can test lymph nodes for cancer by first doing a sentinal node biopsy.

There are lots of other breast cancer symptoms other than a lump

  • Swelling of all or part of your breast
  • Skin irritation or dimpling
  • Breast pain
  • Nipple pain or nipple turning inward
  • Redness, scaliness or thickening of your nipple or breast skin
  • Nipple discharge
  • Lump in your underarm

Breast cancer reconstruction options – lots of great ones

  • Immediate reconstruction with tissue expanders
  • DIEP Flap
  • One Step
  • Tram
  • Nipple Sparing
  • Lat Flap

Really cool people I’ve met through my breast cancer experience

  • Lori Buckfire – check out a hilarious blog from a very inspiring person
  • Pam Lucken – a survivor I met after she was diagnosed, now a good friend
  • Patti Nemer – knows everyone in the Michigan Breast Cancer community
  • Valerie Fraser – Inflammatory Breast Cancer Survivor and big advocate in the breast cancer community
  • Jonny Imerman – testicular cancer survivor and founder of Imerman’s Angels
  • Missy Mazorati-Bergman – another wonderful breast cancer survivor who walked around with the boldest bald head ever for 6 months
  • Laurie Alpers – survivor friend who got very involved with FORCE early on and now walks with me on Ta Ta Breast Cancer
  • Whitney Ducaine – my genetics counselor who helped me start the first Southeast Michigan outreach group for FORCE
  • Lindsay Avner – founder of Be Bright Pink
  • Sue Friedman – Executive Director and Founder of FORCE
  • Joanna Rudnick – Producer of documentary In the Family
  • The women of Ta Ta Breast Cancer — both my new friends and old friends
  • The walkers, crew and staff of the Breast Cancer 3-Day who devote so much to finding a cure for this disease
  • My new FORCE family including all the wonderful genetics counselors in Southeast Michigan
  • The women and men I met at the FORCE conference in Orlando
  • Lots of really inspiring advocates I met at the Susan G. Komen Advocate Training
  • The women battling cancer everyday and reminding me why I need to keep fighting

Fun websites to buy  cancer gear

 Great doctors

  • Dr. Alvin Schoenberger – greatest OBGYN ever who was very aggressive in making sure we took action with my lump
  • Dr. Jeffrey Margolis – brilliant Oncologist who treated me
  • Dr. Daniel Sherbert – super nice and extremely talented Plastic Surgeon
  • Dr. William Kestenberg – performed my biopsy, results on Thursday night, scheduled all my tests throughout the weekend so I didn’t have to wait the weekend to learn that the cancer had not spread
  • Dr. Scott Schell – my breast surgeon
  • Dr. Ruth Lerman – follows me for yearly breast exams, also a breast cancer survivor
  • Dr. Dana Zakalik – Oncologist very involved in cancer genetics and helped start our local FORCE group
  • Dr. Laura Freedman – Radiation Oncologist and personal friend who was always willing to talk to me
  • Dr. Melissa Davidson – my trusted sister-in-law also a physician who  reviewed my pathology report and all my test results and spent lots of time helping me navigate
  • Dr. Scott Davidson – my brother-in-law who spent lots of time on the phone with me following my diagnosis and during my treatment

Easy ways to raise money

  • No need to plan an elaborate black tie dinner, a backyard party with all the food donated and an auction can generate lots of good income without requiring a big donation.
  • Promote your favorite places and ask them to make a donation in return.  TD nails has donated several hundred dollars to the Breast Cancer 3-Day just by having people mention Ta Ta Breast Cancer. 
  • Have a bar night — we promoted our 24 Seconds fundraiser via Facebook and a small amount of email and raised over $1,000 without any out of pocket cost
  • Theater nights — we promote and buy as many tickets as we need — raised over $3,000 for Annie

Some Great Books

Great Movies

As I was developing this list, I realized that I have a ton of great people reading my blog who could provide some additional input into my list of 100 so I’ve left room in the list–I have about 10 left.   Any organizations you love, doctors you trust, must-read books, new things you’ve learned, tidbits that we can all share.  The more we can help eachother out, the better we can fight.  So go ahead and post a comment, help me complete my list of 100.

Additions to the list

Thanks Molly, Patty, Kim, Laurie and Alyssa for adding some great sites and tips to check out by posting a comment.  Keep em coming….

  • Sister’s Hope – Recommended by the Pink Fund
  • eraceibc.com – A site devoted to Inflammatory Breast Cancer
  • thebcmall.com
  • Unbeatable – a musical about breast cancer.  I need to know when they are coming to Detroit.  Looks pretty darn funny.  Check out the description I pulled from their website and the very cute image.3417805339_54165a1dda

UNBEATABLE! juxtaposes the gravity of a cancer diagnosis with optimism, hopefulness and a keen sense of humor. The message of UNBEATABLE! is universal and applies to anyone who goes through life at full speed, without realizing that in the end, it is the people we love in our lives, not the “to do” lists, that deserve our time and attention.

Laurie’s Additions

  • Dr. Julio Sosa – Plastic Surgeon
  • Shades of Pink Foundation – non-profit to help women with financial issues after a breast cancer diagnosis
  • Dr. Pamela Benitiz – Breast Surgeon

Another suggestion from a trusted source…

Dr. Gail Parker – therapist in Southeast Michigan available to provide support to people with BRCA Mutations

So many breast reconstruction options!

Immediately after my doctor told me I had breast cancer, I told him I was having a bilateral mastectomy.  There was no doubt in my mind that on drop of cancer meant that both my breasts were going.  This was before I even knew about my genetic mutation.  As soon as I got through all the scary screening (bone scan, chest x-ray, blood work), I started focusing on breast doctors and plastic surgeons.  I made my decision pretty quickly and was ready to go.  My path was clearly defined.  I would have the mastectomy, have expanders put in place, go through several months of expanding and ultimately exchange the expanders for my implants.

While I knew there were several other breast reconstruction options, none of these were an option for me and I didn’t even bother reading or discussing any of them.  I made up my mind and had the surgery.  So this weekend was a completely eye-opening experience as I talked to women about their DIEPS, GAPS, one-step with Alloderm and their nipple sparing mastectomies.  I’m sure there’s others that I’ve missed so feel free to chime in if I’m missing something.  Not only did I hear about them, I got to see them and even touch them.  From 8p-11p each night in the show and tell suite reserved for women only, women lifted their shirts and discussed their experiences.  Choosing a mastectomy is a tough and emotional journey—especially for previvors—who haven’t had cancer and it’s so wonderful that FORCE provides this avenue for women to share their experiences, see the results and get answers to their questions first-hand.

So much to share!

Oops.  I’ve been neglecting my blog again.  There’s always so much to share but so little time.  I’ve started training again—pretty short distances at this point but still takes a chunk of time.  It feels good to get back in walking mode and now that the sun is finally shining, I can’t wait to get outside.  Work is keeping me busy too—writing proposals, proposals and more proposals and working on our Brogan & Partner’s blog.  I was extremely flattered to recently be named Breast Cancer Survivor of the Month on the breastcaresite.com.  And I still have my moments when I lose myself in Twitter and can’t find my way out.  If my tweet deck is up, breast cancer tweets pop up every other second and if they include links to articles or videos, I’m in big trouble.

This Saturday, I’m speaking at the St. John Health Breast Cancer Symposium.  Next week, I’ll be talking about Social Media to the Michigan Association of Realtors.  I’m looking forward to sharing my knowledge in both areas through other speaking engagements.  I’m also very busy ramping up fundraising efforts for the 3-Day.  While the economy is tough right now, it’s nowhere near as tough as cancer.  If you’ve got a spare $5, please donate. 

I found a site last night that I thought might be helpful to some of my readers.  It’s from a fellow FORCE member.  She chose to have a prophylactic mastectomy and does a wonderful job sharing details of her decision-making process, the surgery and post surgery.  I was too busy going through chemo and didn’t really pay much attention to the surgery and expansion process but I think this would so helpful to people who do have the BRCA mutation and may be considering surgery.  The unknown is always far scarier.  She does include pictures throughout the process and has yet to have her final reconstruction.  Thank you to Lianne for sharing your journey. 

Happy sunshine and spring to those of you living in the State of Michigan.  Hope the rest of the country is sunny today!

Help fight Ovarian Cancer today!

I’ve said before and I’ll say it again. I’m a lucky survivor. I caught my cancer early, I got my treatment and I feel great today. I did everything I could do to fight cancer—double mastectomy, lymph nodes removed, chemotherapy, oophorectomy combined with a full hysterectomy. My oncologist told me that even the most conservative radiation oncologist would not suggest radiation. I count my blessings everyday and continue to fight for my friends, Cousin, Mother, Grandmother, Aunt, Sisters-in-Law, Daughter and all the other women and girls out there. Until there is a cure, we must be absolutely vigilant about our health. In the world of breast cancer, there are many things we can do. We can know our genetic status, we can go for yearly mammograms (or more frequently, if necessary), and we can do monthly self-breast exams. We can catch this disease early.

Unfortunately, we are not so lucky with other cancers—specifically ovarian cancer. But there is something that everyone can do right now—today–to help in this fight. We can ask our Senators to support two very important ovarian cancer programs. One is dedicated to research and one is dedicated to raising awareness so we can catch this disease earlier. This will take no time but it will help save lives. Please do your part for all the women in our lives. Together we can continue to make a difference.

The nipples are done–sorry no pictures yet!

My nipples are tattooed and my breasts are completed.  It was pretty uneventful.  Dr. Sherbert numbed me just in case I have any feeling.  Since I felt the needle and I did get a little light-headed, I’m guessing I do have feeling so numbing was a smart idea.  After that, Annette (the tattoo artist) and I chatted about color.  She took a look at my pre-op pictures and we talked about my original nipple color.  We settled on a color and she went to work.  Now I’m home with some saran wrap on my nipples feeling pretty decent (other than the start of another cold).  Is winter almost over?

My completed set in 18 months!

Tomorrow’s another big day—tatoo day.  I trust these will be the only tattoos I ever get on my body.  It will be exactly 18 months to the day from my mastectomy to completion of my breasts.  I must admit I took it slowly—I’m sure others finish the process much quicker.  But frankly I didn’t mind my faceless breasts and I don’t really care about the tattoos.  I’m sure in the long run though I’ll want my completed set so I might as well finish the job.  Wish I was bold enough to get butterflies, hearts or something else really cute on my breasts but I’ll just stick with plain old circles.  Hmmm.  I wonder what color suits me best.  I’ll report more tomorrow when I come home. 

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