Flashback #4: After A Mastectomy You Get New Boobs! Yay! Wait, Not Really

breast reconstruction

To celebrate our 2-year anniversary of being a nonprofit, Lacuna Loft is bringing back our top 31 articles from our archives!  The countdown to our top post is continuing today with Flashback #4: After A Mastectomy You Get New Boobs! Yay! Wait, Not Really, written by Karen. These 31 articles are the best of the best and we’re very happy to share them with you again!  The countdown continues next week!

….When I tell people about my mastectomy and breast reconstruction, I receive lots of support, many questions, and even some rude comments. The most frequent thing I hear from both women and men is “at least you will get perky boobs” (insert awkward laugh here)

For those of you who, thankfully, have not had a mastectomy or been close to someone who is going through one, you might think that this is going to make us feel better. It doesn’t! I understand that it is meant to be a supportive comment, but, I promise you, this is not a normal boob job. Yes, I did get implants to replace my real breasts, but that is where the similarities end………

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Read the rest of the article here!

Flashback #23: Interview With Cancer Survivor Jenn!

breast cancer survivor

To celebrate our 2-year anniversary of being a nonprofit, Lacuna Loft is bringing back our top 31 articles from our archives!  This is Flashback #23: Interview With Cancer Survivor Jenn! was an interview with Jenn. These 31 articles are the best of the best and we’re very happy to share them with you again!  The countdown continues tomorrow!

….Lacuna Loft: What was your biggest parenting challenge during cancer treatment and into survivorship?

Jenn: I lost my job during treatment so I used the opportunity to volunteer at their schools and participate as team mom for the sports they played. Yea, I was the bald mom at football practice and in art class but I used it as a teaching moment for all the kids. Some asked to see my head without my hat or scarf and I happily obliged. I wanted my kids to know that no matter what I’d still be their mom and I’d always be there for them. The toughest part though was when another child told one of mine that I was probably going to die. I had to do a lot of damage control, I certainly couldn’t predict the future but I couldn’t have my kids living in fear either. I always tell them (still to this day) I’m fine right now….

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Read the rest of the interview here!

Flashback #24: Boobs To Noobs

breast reconstruction

To celebrate our 2-year anniversary of being a nonprofit, Lacuna Loft is bringing back our top 31 articles from our archives!  This is Flashback #24: Boobs To Noobs was written by Mahalia. These 31 articles are the best of the best and we’re very happy to share them with you again!  The countdown continues next week!

….Getting breasts is one of the hallmarks of becoming a woman, but for most of our lives, they’re merely decorative. In the case of men, I believe their’s are God’s way of reminding them their embryos started out as female, to help connect them with the female experience, or maybe they’re just a Darwinian fluke. For whatever reason, everyone has them…

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Read the rest of the article here!

Flashback #31: The Anti-Bullying Cancer Manifesto

cancer bullying

To celebrate our 2-year anniversary of being a nonprofit, Lacuna Loft is bringing back our top 31 articles from our archives!  This is Flashback #31!  The Anti-Bullying Cancer Manifesto was written by Christina.  These 31 articles are the best of the best and we’re very happy to share them with you again!  The countdown continues tomorrow!

This may seem like an odd topic when discussing cancer, but cancer bullying is surprisingly prevalent – and it needs to stop!  In my time going through cancer, and since recovery, I’ve discovered that there is a little-known – yet highly-destructive – phenomenon called, Cancer Bullying.

This manifesto is intended to shine light on the many forms cancer bullying can take, and why they are detrimental to those experiencing cancer.

Types of Cancer Bullying

Cancer bullying comes in many forms, but in this manifesto I’ll go into these four main types of cancer bullying:

  • Treatment choices (aka, East vs West)
  • Emotions & boundaries
  • The cancer pissing contest (aka, My cancer is worse)
  • Nit-picking over words, names and references

All of them are pervasive, and some – ironically – sprout from good intentions, and can even come from our loved ones.

I dedicate this Anti-Bullying Cancer Manifesto to all past, present and future cancer warriors.

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Read the rest of the article here!

Let’s Talk About Sex

sex after young adult cancer

This post is brought to us by Jennifer!  If you missed her interview with Lacuna Loft, you can find it here!  You can find all of her posts here.

“Let’s talk about sex, baby. Let’s talk about you and me. Let’s talk about all the good things and the bad things that may be… let’s talk about sex.”

– Salt N Pepa, “Let’s Talk About Sex”

The speed at which your head spins upon getting a cancer diagnosis eventually stops. You right your course; you hold your head up and barrel through invasive tests, treatment and surgeries. You may lose body parts. You may go into ‘I don’t care just get it out of me’ mode. You may cry, break things, and climb under the covers for as long as you can withstand not having to eat or pee. It’s all normal and it’s all okay. There is no right or wrong way to deal with cancer. There will be a time when you catch a glimpse of your pre-cancer life after the haze of treatment. Maybe you’ll go shopping or out to lunch. Perhaps you’ll make time for a quick mani-pedi with a friend or enjoy the solitude of sipping a cup of coffee alone in a café. In pieces, it comes back; a subtle reminder of the complete person you were pre-cancer. But in the trenches of treatment we may forget, in addition to human beings, we are intimate sexual beings as well. That is typically the last piece of the puzzle to fit into place.

The words sexuality and cancer, when used together, are an oxymoron. How can you possibly feel desirable, or attractive when you’ve been chopped up and put back together? As a breast cancer survivor I frequently refer to my Franken-boobs, for they are unlike any other body part I was familiar with. They feel numb, alien, foreign and far from sexy, trust me, they are just for looks. Add to the extensive surgical recovery the indignities of chemotherapy: nausea, mouth sores (and sores in other areas where you have mucous membranes … wink, wink) and both diarrhea and constipation. If you need radiation you may have to deal with extreme fatigue and often painful burns and blisters. Good times? No. Sexy times? Not even close. But one thing I realized during my first visit to Cancertown is that intimacy is even more important than sexuality. If you are as lucky as I am to have a kind and extraordinarily patient partner, you realize that way, way, way before the physical must come the emotional. Being intimate with someone is so much more than a bump and grind between the sheets.

When I was in active treatment my husband and I set up a routine, which, unbeknownst to us, built intimacy. While I was on disability the first thing we would do in the morning was go for a long walk at a local park. Sometimes holding hands sometimes not. There were times I wanted to be touched and times I needed to be self –contained, he respected that boundary. We would frequently grab a coffee and a bagel on the way to treatment (I found heavy starchy carbs to be great at keeping the nausea at bay). After treatment, if I felt well enough, we would go for a light lunch. We would sit across from each other in a booth, sometimes talking, sometimes reading the newspaper, sometimes doing the mundane like paying bills or making the week’s shopping list but we sat there, together. That’s intimacy. Once the hard-core chemo was done, and my appetite back to normal I still had to contend with my monthly Herceptin infusions. I would schedule them for late morning so that we could have our Herceptin lunch dates, afterwards. We were side by side, together. It wasn’t a turn-on but it was intensely comforting. I set the pace and the boundaries and he respected that allowing intimacy to grow.

As my hair began sprouting and I lost that deathly pallor that cancer embedded into my skin I began feeling pretty good about myself. I could totally rock the buzz cut and cancer gave me a bit of swagger. I was a badass and I sure as hell worked it. My husband’s desire for me was always there … I just had to be ready to accept it. We started slow; there were many nights of simply snuggling, holding each other and talking. When I finally felt ready I asked my nurses for any tips and or tricks because my body, I could tell, was so different than it had once been. Their advice? “Oh sure honey, just use lube and protection.” Ummm, okay.

Armed with a vat of KY and a box of condoms I decided to tentatively step back in the sexytime ring, but within seconds my lady parts were screaming ABORT, ABORT, ABORT. See, my nurses never told me that using KY would be akin to sitting upon hot coals. So no. No sexytime for us that night.

When we were over the trauma of the fire crotch we tried again, but this time with coconut oil, which is truly the bomb-diggity! Was it great? No. Was it better than I expected? Yes. I felt a part of myself come back to life. We took time to build up the intimacy, which eventually bridged the gap, to desire, which then led to the good stuff. I got my groove back. We got our groove back. Then I found out I had cancer again.

This time my damn hormones were the driver, which meant after the bilateral mastectomy, after the DIEP flap reconstruction, after the drains, after the chemo and after the hair loss I was scheduled for a full hysterectomy. I was quickly being stripped of any and all femininity. Being put into chemical menopause twice before I even hit age 45 and then having all my lady parts removed was a real hit to my libido. All I could envision was myself quickly aging into a hairy, sexless troll. Sure I knew we had the tools from the first visit to Cancertown but could we do it again? Would I ever feel like an intimate sexual being again?

The short answer to that is yes. Like a camel that can go weeks without water while trudging through the hot dry sandy desert we, as sexual intimate human beings, can go quite a while without sexytime. The key is to build intimacy. Intimacy comes in many forms but at its root it’s about being together, communicating and understanding the boundaries and limits a loved one with cancer may be dealing with. It’s not easy and there is no set timeframe. Listen to your body and to each other. Remember, your partner may be terrified of hurting your newly scarred and reconstructed body as well. Talk through your fears and your feelings. Explain your needs and the ways your body has changed. Be honest and embrace each little pre-cancer piece that returns after the long dry spell.

3 Important Questions To Ask At Your Mammogram Appointment

questions to ask at your mammogram appointment

“Breast density is recognized as one of, and possibly the strongest risk factor associated with development of breast cancer, according to the National Institute of Health.”

Getting cancer is complicated, especially as a young adult.  Your peer group won’t be well armed to advise you on all of the ‘shoulds’ and ‘coulds’ of the situation so you’ll likely be figuring a lot out on your own.  If you’re going in for a mammogram though, now you have someone in your court!  For the Love of Cups has put together 3 important questions to ask at your next mammogram appointment.  Arming yourself with as much power behind your self-advocacy as possible is crucial to taking charge of your own care.  You know your body better than anyone else!

Read the entire article here.

Radio Days And The Boob Bubble

young breast cancer radiation therapy

Outside. Directly opposite. Big Ben has chimed a big fat 9 am.

St Thomas’s radiotherapy unit. This is my home away from home for the next 23 consecutive days – excluding weekends – cancer doesn’t do weekends – thus resulting in my appointments being drawn out and clashing with my beloved Glastonbury Festival. Nooooooooo. To go during radiotherapy or not to go? That is the question.

I look around me at a sea of white hair. Bloody hell. Everyone’s so old. I don’t want to get that old. So old some of these patients look like they’ve been wheeled in from the set of Dr Who. Fossilised and mute. Why are you here?! What’s the point of prolonging your life?! What quality of life are you going to actually have? Yeh the heart’s still beating but everything else is buggered. I’d just like to reach 50 please universe. No more, no less if that’s not too much to ask. As I contemplate this, I notice an elderly patient smiles at me…. and doesn’t stop smiling at me.

Bridget is 80. She’s a sweetheart and there to have her pelvis done. She tells me her ENTIRE medical history, then lowers her voice to almost mouth the words…

“Once my radiotherapy finishes I have to stick several medical objects up my…….!!!!”

Get. Me. Out. Of. Here.

Her eyes light up, “I’ve never used a vibrator before.”

Silence.

Say something Lara!

“Well….. better late than never.”

Bridget gets called to her appointment.

Thank……………God.

It’s been two months since I finished chemo. Three weeks after chemo I had a re-excision – usually it’s meant to be 4 weeks but my surgeon fast tracked me so I had a chance of making it to Glasto. Priorities man. I love my surgeon. A re-excision is basically more surgery to remove a bit of skin in my boob that was touching the tumour. This is called the ‘margins.’ Imagine my tumour is a fried egg sunny side up. Which is appropriate really, seeing as my tits look like a couple of fried eggs. The tumour is the yellow yolk and the margins are the egg white. Everything has to be removed. The surgery is done using the naked eye. My dear surgeon thought he’d removed the whole fried egg in my first round of surgery (I had a lumpectomy.) But the pathologist (who’s job is to cut and examine the juicy lump of tumour tissue) found he’d only removed three quarters of the margins. So he went back in there and cut the last bit of the quarter out. The results came back clear. No traces of cancer. Boom.

Three weeks after the re-excision I go in for my radiotherapy pre-assessment. I lie on the measuring table. The nurses tattoo 3 tiny dots (the closest I’ll ever get to being cool.) One in the centre of my chest and the other two either side of my boobs. This is so the measurements are completely precise. Radiation is hardcore. It’s so strong that not only will it kill any cancer cells, it also kills the healthy cells and can potentially damage my ribcage and my lung as it zaps the shit out of where my tumour was and the area directly around it. It kind of reminds me of a microwave nuking my insides. This is why the radiotherapists don’t want to damage any more of me than is necessary, hence the exact tattooed measurements.

“Have you had an implant?” asks the nurse.

I snort.

“Do you think my boobs would be this small if I had implants?!”

The nurse titters “Yes you have a point” and carries on the examination. A confused look comes over her face.

“Mmmm there seems to be something in there. But don’t be alarmed.”

(Riiiiiight.) I smile. Nervously.

She proceeds with my CT scan.

“OK Lara. Just looking at your scan, it appears you have an air bubble stuck in your breast.”

Sure.

“Is that normal?”

“I’ve never seen it before. It must have got trapped in there after surgery. I think it’s best you get it seen to before you start radiotherapy as it could effect things.”

I get dressed and have a good feel.

Yep, there’s a large air bubble in my boob. Not dissimilar to a giant freaking piece of bubble wrap.

I book an appointment with my surgeon. My breast care nurse comes along for moral support. The three of us sit there. And giggle. Neither of them had heard of anything like this before. After sticking a syringe in it (I didn’t deflate like a balloon whizzing round the room sadly) the doc shows me what he’s drawn out. A tiny bit of red goo. Barrrfffff. But the bubble’s still there.

An ultrasound later (that doc had never seen anything like it either) I carried on my merry way with the advice “it should eventually absorb back into your body.” And sure enough, a week later, it did. Bubble tit drama over.

So, back to the radiotherapy unit. I’m lying dead still. All Saints ‘Never Ever’ is playing. Never ever as a 14 year old listening to that song did I imagine myself lying here half naked looking like Sigourney Weaver in Alien about to have my tit nuked.

Brrrrrrrrr it’s always so cold in here. They crank the air con up to keep the equipment cool. My nipples are like pistols. I almost expect the radiotherapist to halt dead and stick her hands up on entering and seeing them!

The lovely radiotherapists walk in.

“Ooo it’s cold in here,” one of them says.

“Hang on a minute. I’m half naked. At least you’re all wearing clothes! My nipples are like bottle openers!”

They all chuckle. I am quite funny.

“Ok Lara, see you in a moment.”

The radiotherapists dash out of the room – they can’t be anywhere near the machine when it’s in action. I mean who wants to be near a machine that transmits radiation and can potentially cause cancer?

Oh.

As I lie there on my back, arms stretched up over my head, nipples you could hang a coat on, I think about how at ease I’ve become with being naked in front of all the nurses and Doctors. At least this is a flattering position. It’s certainly the most pert they’re ever gonna look.

The 23 days are a jumble. It takes more than cancer to stop me from going to Glasters. Friday morning straight after rads I set off with my wellies and sequins. It was the best weekend ever, spent laughing and dancing with my wonderful friends who surrounded me with LOVE. I’ve never done Glasto sober before. Who needs alcohol and narcotics when you can have vegan sushi and a gong bath?!

On Monday, full of happiness and my yearly Glasto rebirth of life (I promise you, no narcotics) I drove straight from Worthy farm to the hospital, covered in glitter and grinning from ear to ear in time for my LAST radiotherapy session.

The perfect way to end active treatment.

This post originally appeared here.

Shining The Light On Metastatic Breast Cancer

metastatic breast cancer

Refinery 29 is shining the light on metastatic breast cancer.  Using wonderfully beautiful photographs of women facing metastatic breast cancer.

“…Refinery29, in partnership with #Cancerland, has been bringing you these women’s stories, in an effort to change the conversation about breast cancer. We’ve talked about how only about 2% of the money raised for breast cancer research goes toward metastatic disease, and we followed stage-IV activists to D.C. as they lobbied congress to change that. But as October comes to an end, we want to turn to the daily, lived experiences of these women: What is it really like to live with a disease that everyone seems to have heard of, but no one really understands?”

The pictures show the scars and the faces and the souls behind the women, bringing life and awareness to this terrible disease.  The women talk about quality of life and the continual grieving that happens when life and its goals are irrevocably changed.

Are you a metastatic young adult cancer survivor interested in sharing your story?  Email info@lacunaloft.org.

image via

Let’s Talk Nipples

nipple prostheses

Let’s talk nipples. After a unilateral or bilateral mastectomy, women are left with many choices. To reconstruct, fake it, or stay flat. It all comes down to personal preference. For women who decide to undergo breast reconstruction, the nipple stage can be the icing on the cake — the final step in piecing yourself back together. Though each woman’s reconstruction story is unique and personal, the nipple choices can be boiled down to three main options.

  1. Surgically reconstructed nipples
  2. 3D nipple tattoo
  3. Prosthetic nipples

For some women, the lack of nipples can be quite an emotional struggle. They may look in the mirror and see an unrecognizable image, one that does not look or feel “normal” or complete. Nipples can provide that aesthetic element that is missing and help to bring a sense of confidence during the difficult reconstruction process.

I am slated to have my implant exchange surgery in November and I am not interested in going through another surgery to reconstruct nipples. That leaves me with the choice of 3D tattoos or nipple prosthetics. While at the Living Beyond Breast Cancer (LBBC) conference last weekend, I finally got a chance to check out Pink-Perfect nipple prostheses, something I was enamored with since I saw them at the YSC conference back in March. They are just so COOL!

Pink Perfect produces realistic ready-made adhesive silicone nipples for women who have undergone unilateral or bilateral mastectomies. The silicone nipples were designed by a breast cancer survivor and are made by an artist to replicates the shape, size, color and texture of your remaining or original nipple (s) The nipples are waterproof and can be worn in the shower, ocean or swimming pool.

bold-sandy-front

Pink Perfect offers a wide range of colors and projection options (modest, natural or bold). The color options are shown in the image below. I was matched to the color Sandy. If you don’t find a color that matches your body, Pink Perfect will work one-on-one with you to create a custom prosthetic nipple (s) that perfectly matches your body. The custom option is a bit more expensive.

pink-perfect-8

The ready made colors/styles are available for $240 and the custom version is $330. All prices reflect a $40 discount offered for October only. My Cancer Chic followers can also apply a special promo code:mycancerchic to obtain an additional $25 off. Keep in mind that many insurance providers will cover prosthetic nipples. You will need to talk to your plastic surgeon to get a prescription, just like you would for mastectomy bras.

After trying the nipples, I was surprised by how easy they could be applied and how realistic they are. The medical grade adhesive allowed me to wear the nipples throughout a normal day, and while exercising and showering. I think the silicone nipples would be a wonderful option for anyone considering nipple reconstruction. They are pain free, less expensive than surgery and allow you the opportunity to see if nipples provide you a sense of emotional comfort or closure.

pink-perfect-before-and-after-1

After wearing the nipples for a few days, I realized that the nipples did not change the way I felt or the way I saw my body. They were super fun and kind of sexy, but my real nips are gone forever and will never be replaced. I will never be able to breastfeed and what was once a fun zone is now a cemetery. I found that I like being nipple-free. I love going bra-less and I have accepted my appearance post-surgery. It did not happen over night, but I am coming to love this new body of mine. I am rebuilding my own body image and for me, nipples just aren’t going to be a permanent part of the package. I am so grateful for the opportunity to try the prothestics to confirm my decision about not undergoing the nipple reconstruction surgery. Now I have the option to choose nipples like a fashion accessory each day and someday down the line I may get a 3D nipple tattoo.

If you’re interested in nipple reconstruction, I highly suggest you try the nipple prostheses first. If you want to avoid another surgery, these are a great alternative.

If you want to see how the nipple prostheses work and how to apply them, check out this awesome video by the lovely Aniela McGuinness of ‘My Breast Choice’. Also, if you haven’t seen her AMAZING photo series of before and after mastectomy photos, check them out here.

https://www.youtube.com/watch?v=EpiWZYWYOO8)

Disclaimer: I was provided with this product for free in exchange for my honest review. All thoughts and opinions expressed are my own and are not influenced by the company that provided this product.(Lacuna Loft has received no compensation for this product…we just want you to know your options!)

(Lacuna Loft has received no compensation for this product…we just want you to know your options!)

Originally published on mycancerchic.com.

Stronger Than I Knew

cancer survivor tattoo

When I was first diagnosed, I turned to my husband and told him I didn’t think I was strong enough to make it through something so monumentally difficult. I didn’t think I had the strength to carry on and the hope necessary to face my own mortality. It turns out I couldn’t have been more wrong… I am stronger than I knew!

If you’ve followed my blog from the beginning you have seen my reflections on personal growth and how I have used this journey as an opportunity to learn more about myself and grow as an individual, a friend and a partner. The insecure woman living in fear who existed prior to cancer is gone. Cancer helped me find the power and self love within that I needed to make this life my own and live each day with purpose and happiness.

When I woke up today, the power of my growth and strength stopped me in my tracks. I was overcome by emotion. After everything I have been through, I cling to these emotions. They serve as proof of my journey — the reward at the end of the tunnel. I made it through a year filled with pain, struggle and heartbreak. Though I am far from unscathed, the strength and confidence I have gained is a priceless gift. I now believe that I am worthy of everything that life has to offer. No matter what my future holds and what challenges I must face, I know without a doubt that I am strong enough to survive and thrive!

The tattoo I got today represents all of this power I feel. I am stronger than I ever knew and I will continue to move forward, one day at a time. My story is not finished and I have so many more pages to add. I hope that my story will inspire you to live your life in the same way. Grateful for every moment and appreciative of your inner beauty and strength. Never underestimate yourself. You are stronger, braver and more beautiful than you ever knew.

Originally published on mycancerchic.com.