Nipples cost extra: The secrets no one tells you about having a breast reconstruction.

If you were diagnosed with breast cancer tomorrow, what choice would you make?

Could you live without breasts? Would you have a reconstruction? Would you pay extra for nipples? Or would you get nipples tattooed on?

Breast Cancer campaigns and initiatives have been super successful in raising disease awareness and promoting detection in Australia. But there is little awareness about the ongoing procedures, challenges, costs and complications that many breast cancer survivors face.

I spoke to 7 seven women who know about this in all of its gritty details.

Sally, 50, is an artist.

She was first diagnosed at 44 with tumours in her right breast. Her surgery required a right breast mastectomy which resulted in the removal of all 32 lymph nodes.

“I was not thinking of reconstruction at that point. I nearly lost my life, my house…I didn’t think about reconstruction until I had my left breast removed once it started thickening 18 months ago,” she says.

Unlike many women who incorporate reconstruction as part of their mastectomy, it wasn’t until Sally’s second breast was removed, four years after the first, that she commenced her reconstruction.

“Initially I had Stage 3, Grade 3 and secondary cancer. They told me if I didn’t have chemo I would be dead in three months. Also I had to go through 12 months of chemo, and a double mastectomy would have made it hard for me to heal.”

One of the major challenges for Sally for her future reconstruction was the removal of her pectoral muscle along with her right breast in the initial surgery.

“Surgeons need to consider that you are going to live” she says. “A lot of surgeons don’t consider a reconstruction when they take the tissue away. In America they have to have a plastic surgeon consulting before they can remove a breast so the woman has the option to reconstruct.”

Samantha, 48, is the Head of Sales and Marketing for a busy Sydney Event Management Company.

After her lumpectomy failed Samantha opted for a bi-lateral mastectomy, even though the tumours were only detected in the left breast.

“It helped having so many women contacts who had been through it. They said: Don’t mess around. Get them off.”

As a private patient Samantha’s reconstruction options coincided with her mastectomy.

“I had months of chemo, and during that time I went and saw a breast surgeon who my oncologist had suggested. She was very expensive but another friend had been to her and she had done an amazing job.”

Even with private health insurance, it was a costly endeavour but some private fundraisers helped.

“Having the doctor you want is an expensive process, all up I had to come up with about $25k for my double mastectomy and reconstruction on top of my private health.”

Samantha explained the options she had for nipples.

“I wanted to keep my nipples. My biopsy showed it was clear in that region but when I spoke to the surgeon she said that ‘you can keep them but we get a much better result in the augmentation if you take them off because we can place the new ones in a better spot. I took that on board and decided to go with that.”

Nipples in the private sector cost around $3k and are created from skin from the hip or groin area with blood vessels that are grafted onto the breast.

Samantha described the actual reconstruction process as ‘barbaric’.

“They put in this very thick rubber stuff to stretch out the pectoral muscle and a metal port at the top where they inject the fluid, around 200 ml per breast at a time. I had a lot of pain, every time they injected me I felt like someone was punching me in the chest.”

“My breasts are right up under my chin, sitting literally under my collarbone. The next part of the procedure is to cut underneath the breast and take out the expander. Then they divide the muscle and put in the implant so it sits lower and looks right. I will have mine done next winter. It’s a really long process.

‘It’s been the hardest year. I feel like the Bride of Frankenstein. After my surgery I read my horoscope. I don’t know why I did it, but it said, no matter what you do, after today you will never be the same again, but you will do what you are best at doing, and make the best of it. I couldn’t believe what I had read because that’s how I felt. Like there was no going back.”

Linde, 50, is a sculptor.

Linde went through the same process as Samantha but in the public health system.

“I didn’t research anybody. I stayed with the plastic surgeon that I was allocated. I went from being a person to a patient overnight. I took who I was given and made a promise to the oncologist that I would be the best patient I can. I decided the moment I had cancer that I wouldn’t listen to the horror stories people tell you, the only relevant story was mine.”

Sarah, 44, a mother of 5 and a teacher’s aid.

Sarah opted for a reconstruction after her preventative bi-lateral mastectomy (after a lumpectomy failed to clear the margins in the affected breast).

“My surgeon had had breast cancer herself, she was really caring and experienced especially when it came to choosing what implants I wanted and how big they should be.”

Sarah experienced 18 months of pain and discomfort during the ‘expander’ process that prepares the breast for implants.

“It was a huge relief to get the silicone in. They are soft and light now. I can sleep on my side again.”

Unlike Samantha, Sarah has decided not to have nipples.

“I must have long boobs from all the kids! There is some measurement from the clavicle to the nipple and mine was too far for the blood supply and I didn’t want to risk my nipples going black and falling off. In time I will probably get a nipple tattoo.”

Margo, 60, is a counsellor.

Margo has only just had her left breast removed and she was not interested in reconstruction.

“I have tiny tits anyway!” she laughs. “I did a lot of research and looked at various pictures of reconstructed breasts. They looked alien to me. I also wasn’t 100% sure that I wouldn’t do radiation.”

Due to the thinning of the skin, women who undergo radiation are not able to have breast reconstruction. If they want to rebuild their breast shape they can opt for the TRAM flap – a procedure used since the mid 1980’s.

A TRAM flap – Traverse Rectus Abdominis – entails a muscle in your lower abdomen between your waist and pubic bone being harvested to construct a breast, either as a ‘free’ flap on top of the chest wall, or as an attached Flap, under the skin.

A TRAM flap leaves a long horizontal scar from hipbone to hipbone and doesn’t work for women who have had multiple abdominal surgeries, those still wanting to get pregnant, who are physically active or very thin.

As a thin woman Margo was also not eligible this procedure but she says even if she was, she would have opted out.

“If I did one breast I would have to do the other side as I’d have an ageing tit on one side and a magnificent one on the other. They can’t match them!”

Although she admits to not being a ‘tattoo’ person, Margo is considering adorning her scar with a tattoo.

“I heard about an older woman who had a dragon on her chest. I love what that says. I am a dragon in the Chinese sign, but I don’t know yet for sure – that’s down the line. I am not out of the cancer treatment tunnel yet.”

Helen, 58.

Helen underwent a uni-lateral mastectomy and has no plans for reconstruction.

“Part of the reason I haven’t had the reconstruction is why I haven’t had the other breast removed,” says Helen, “I don’t want to have any medical intervention that isn’t necessary. If I could have a new breast with feelings and a working nipple then maybe. But to go through all that and end up with something that has numbness and pain in places and no working nipple? No.”

Helen uses prosthesis, although she finds the silicon model too heavy and difficult to stabilise. “I use the prosthesis made from memory foam that is designed for swimming and exercise. It’s much lighter.”

She laughs about the constant feeling that the prosthesis could become dislodged.

“I am the female equivalent to those men who are always adjusting their anatomy!”

Helen’s husband has been extremely supportive of her decision.

“Yes, having a mastectomy is challenging in a relationship. My husband and I had a fairly intense sexual relationship before and we still do. His view is that he wants what I want, and I don’t want to have surgery.”

Although she’s kept one breast, Helen says her feelings toward the remaining breast have changed.

“It doesn’t feel as much a part of my sexuality as when I had two. I now associate it with pain and sickness. I know it’s psychological, I don’t reject it, it’s just that it used to be a source of pleasure, and now it’s a reminder of something fearful.”

Reclaiming sensuality and intimacy can be one of the greatest challenges for women in recovery from breast cancer, especially when their disease has affected a cherished part of their sexuality. Because while breasts can be reconstructed, the feeling cannot.

“I feel like a mannequin,” Sarah says. “I am numb. And yes it changed the dynamic with my husband because my boobs were a very arousing part of my body. Now that feeling is concentrated lower in my body.”

Linde says intimacy has become scary.

“Being intimate has changed. In fact it’s the thing that would make me cry. You can get away with anything in clothes.”

While Linde and Sally both speak of ‘numbness’ in their breasts, both share a similar remarkable feature: Their backs have become incredibly sensual.

Linde says a particular place on her back, underneath her armpit ‘feels like a nipple’ when it’s being touched.

“I can get so turned on having my back touched in the way my breasts used to,” Sally says. “The nerve endings are damaged or cut, but they still grow and attach to another nerve.”

Like the breast itself, under the softness and vulnerability of the breast cancer survivors is an extraordinary toughness and self-ease. For Sally and the other women who have undergone reconstruction – the long haul has been worth it.

“I am not ashamed of my boobs or scars,” Sally says. “I feel proud – I beat something! I would not have thought having my boobs back would make me feel amazing – but it did. I saw a t-shirt on the Internet; it was the best thing I’ve seen. It said ‘Yes they’re fake, but the real ones tried to kill me!’.”

Barb, 56, is a former nurse.

A fierce advocate through her local Breast Cancer Support group, Barb believes the system needs to better support women in their decision making.

“I stand firm in my belief that women need to have equal access to the best care and information to optimise their health, happiness and wellbeing after breast cancer. This needs to include equal access, for all women, to all of the options for breast reconstruction and optimal health care without feeling pressured either way about their decision.”

Breasts or no breasts, cancer survivors like Barb have one resounding message. They’re still here.

And they’ve endured a whole lot of pain, surgery, fear and change, to get where they are.