Tag Archives: Support group

Reintroduction

I said NOPE to Breast CancerI never really worried or thought much about cancer … until my sister was diagnosed with breast cancer at the age of 28. At the time, I was 21 years old, naive, in college, worried about what plans I had for the weekend, and didn’t really grasp what that meant. More than ten years later, my sister is gone, my mom is gone (ovarian cancer), my aunt is in treatment for colorectal cancer, my other sister just had her own scare, and although I am BRCA mutation uninformed negative, I underwent a prophylactic bilateral mastectomy and started the breast reconstruction process on January 22, 2013. I said NOPE to breast cancer.

Making the decision to undergo such a drastic surgery was both very difficult and extremely easy at the same time. It came after 10 years of vigilant screenings, when anxiety gripped me every six months as I prepared for my sonogram, mammogram, or MRI, anticipating the results to be the worst. When a screening discovered suspicious lumps, I knew that the time had come.

The reconstruction process was long, painful, and complicated (documented here on my blog). More than two years and eight surgeries later I can finally say I am done! No regrets. If I had to go through this all over again, knowing what complications were in store, I would make the same decision in a heartbeat.

It is not the right answer for everyone facing breast cancer and one that should not be taken lightly or made without research, consulting with experts/doctors, considering alternative options (screening, chemoprevention, holistic approaches, lifestyle changes), and understanding the consequences.

There are many resources out there that can help. The My Destiny Foundation and its Facebook support group has been there for me for the last three years, since the days I was making surgery prep lists and had lots of unanswered questions about my upcoming procedure and following recovery. The group is a family of strong women from all over the world that support each other, laugh together, cry together, and everything in between. Visit www.mydestiny-us.com to learn more. If you need support, request to join the Facebook support group. See you there!

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Nipple tattoos

WARNING: NSFW / graphic content below.

I recently attended a local FORCE support group meeting. As always, it was fantastic! Our group meets quarterly, varies in size from five to 20, in age from 20 to 60ish, and is comprised of mostly previvors (in various stages: just found mutation to done with surgeries), but also women currently undergoing treatment, as well as survivors. There’s something for everyone facing hereditary breast and ovarian cancer to relate to. I highly recommend you find a group near you and attend at least one meeting. You may find that it’s not for you, but it’s worth a try. Find a FORCE group near you by visiting the local support page. Other organizations also have in-person support group meetings, so check with your doctor or do some googling.

Sometimes we have guest speakers come to share their research, work, products, or information relevant to our community. Our most recent guest was tattoo artist Amy Black of Amy Black Tattoos and Pink Ink Fund. Since 2011 Amy has been specializing in nipple and areola repigmentation as part of the breast reconstruction process for patients post-mastectomy due to breast cancer or as a prophylactic measure. Her 3D nipple tattoos look like the real thing! See for yourself below. Pink Ink FundAmy also founded the Pink Ink Fund shortly after beginning nipple and areola tattooing in response to seeing clients concerned about costs and having no health insurance. Amy’s work both in restorative tattooing and supporting the community is amazing! I plan on paying her a visit once I am done with my reconstruction. In addition to 3D nips, she also does touch ups, repigmentation, and artistic designs.

Here are some examples of her work:

1 5 4 6 3 2

Amy is located in Richmond, VA. If you are interested in contacting Amy, click here.

Facebook support groups

Prophylactic Mastectomy FB group

I have been preaching for a long time now that finding a support group is really essential and this is the #1 item on my list of Resources. Have you joined one yet?

Where? How?

In addition to local community groups that meet in-person, you can find support groups online, specifically Facebook. They have been created and are managed by and for women who are considering mastectomy, preparing for one, or have already been there done that and are there to support those that haven’t (other topics related to hereditary breast and ovarian cancer are also frequently discussed; this varies by group).

I joined a few of them a couple of months pre-PBM and they were and continue to be invaluable resources for me. Lots of advice, photos, love, support, and just general sisterhood. Here are a few of them:

Bonus: if you write a relevant blog, join us in the Breast Cancer & Previvor Blogs group.

These are all closed/private groups, which means you cannot see the posted content unless you are a member. If you’d like to join one, find the group (follow my link or search on FB) and click on the Join Group button in the top right corner of the group page. A few of them require the requesting person to friend one of the administrators and complete a questionnaire before they can participate, so keep an eye on your FB inbox (including the “Other” inbox).

Come on down and join us! I’m happy to assist anyone that is interested. Contact me.

“I can’t say it enough to all of you beautiful ladies, but thank you :). When I had my PBM, I did it with the support of very few people. I have struggled more than I thought I ever would and then about 3 weeks after surgery I found this group. I had no idea that there were such wonderful women that have gone and are going through the same struggles as me. I know no matter what happens I have a huge group of the most caring, strong, and wonderful women that have my back and will always be there for me. I am beyond blessed to be part of this group. I never thought at this stage of my life that I would make such wonderful new lifelong friends. So I just want you all to know I appreciate you all xoxoxo” – posted in the Prophylactic Mastectomy group (sharing with author’s permission)

Resource highlight

My Destiny

While there are countless resources online available to those who are preparing or have already gone through a mastectomy, there area few that stand out. The My Destiny Foundation is one of my favorites. There is an unbelievable amount of information on this page: from lists of questions to ask potential surgeons, to information about BRCA mutations, to recommended FaceBook support groups, to tips on how to communicate the decisions you make to others, and so much more.

The site is run by two wonderful ladies who have been through it all: Lisa Sousa and Kim Richardson Emery.

My Destiny is an online community designed specifically for women, by women, who are at a high risk of developing breast cancer. We bring women together, provide accredited information and support, increase awareness and provide women financial, social, and emotional support that are undergoing a prophylactic mastectomy to reduce their risk of breast cancer!

Visit MyDestiny-US.com to tap into one of the great online resources for women considering a prophylactic bilateral mastectomy.

Snot delivery

Low healthHaving a cold within a week of a bilateral mastectomy is not fun or pretty. I started coming down with something a few days post-op and knew it was going to be trouble. Today, two weeks out, I am still stuffed up and hacking up stuff. I’ve gotten to the point where I feel nauseous from the amount of mucus I have ingested. Did someone order some snot? My nose is raw from trying to avoid that by blowing out whatever post-nasal drip has decided to make an appearance. That’s the “not pretty” part.

The “not fun” part is even worse. Blowing my nose, coughing, and especially sneezing are extremely painful. Each one of those actions causes abrupt movement in the chest/rib cage and is just brutal. My first sneeze took me completely by surprise. Immediately after it came, I screamed out in agony. My husband insists that the coughing and sneezing is good for me, because it forces a stretch. I think he’s talking out his butt and just trying to make me feel better.

Remedies

I got some great advice from the ladies in the FaceBook support groups (see: #1 on my list of Resources). Here’s what I have been doing to make it a bit easier on myself:

  • Carry a pillow, always. When I feel a cough or sneeze coming on, I gently hug it against my chest to soften the blow.
  • Passion orange guava juiceWater, water, water. I drink plenty of water. Guava juice is also good and tasty! Bolthouse Farms Passion Orange Guava juice is my drink of choice.
  • I drink a lot of hot tea and eat chicken soup. Although I maintain a whole foods, plant based diet, I put it on hold for the sake of getting some relief. Chicken soup helps!
  • I take hot, steaming showers.
  • Use a humidifier.
  • Get plenty of rest.
Wonder Woman

Wonder Women

The first item on my list of Resources is: Find a SUPPORT GROUP. I think this is critical to keeping sane, among many other things. I have had the opportunity to participate in all three kinds – traditional, online, and communication with former patients.

A huge thank you to all of the Wonder Women out there that take time to offer their stories, experiences, photos, and support. It is just absolutely invaluable!!!

As I prepare for my mastectomy in January, I spend a lot of time thinking about it all. It has completely consumed me and can be overwhelming at times. If I have a question or just want to vent or want to see some pictures, I just pop on FaceBook or into the FORCE message board and do it. It’s so easy and convenient. I don’t feel like I’m bugging someone when I call them just as they’re putting their kids to bed.

The ladies I came across truly are my heroes! I mean it. In one way or another, they have all been touched by breast cancer. Whether they are like me, considering (or have already gone through) a prophylactic mastectomy, have watched a loved one deal with the disease, or those that have “been there, done that.”  Unless you have had the unfortunate chance to be in any of those shoes, you can’t fully understand how the experience affects every single facet of your life. It is not PINK and fluffy … it is completely devastating. Yet, these women continue to fight and move forward with a positive approach and unwavering determination. Thank you Wonder Women! Keep strong.