Real life

Rachel White, who was at high risk of de­vel­op­ing breast can­cer, was re­luc­tant to un­dergo a dou­ble mas­tec­tomy like her aunt, cousins and sis­ter. In­stead she came up with a so­lu­tion that has since helped many other women in her po­si­tion

Friday - - Contents -

“How I es­caped breast can­cer.’’

Iwas at my older sis­ter Heather’s house, five min­utes from my own home in Ac­cring­ton, UK, one day in Oc­to­ber 2008, when she men­tioned a health is­sue that was wor­ry­ing her. “I think there’s some­thing wrong with my breast,’’ said Heather, now 45.

“What do you mean?’’ asked Lind­sey, our younger sis­ter who was vis­it­ing too.

Heather said she had found an in­den­ta­tion on the un­der­side of her left breast. She had been to the doc­tor three months be­fore and a stand-in GP who ex­am­ined her said he didn’t think it was any­thing to worry about. He told her to keep an eye on it and come back if any­thing changed.

“Can you have a look?’’ she asked us, a tinge of worry in her eyes.

“There is some­thing hard be­hind the dent,’’ Heather said, as Lind­sey and I looked.

We weren’t wor­ried at first. We didn’t think it was breast can­cer as we all as­sumed you had to have a lump if you had breast can­cer. “Go back to the doc­tor and get it checked out again, but I am sure you’re fine,’’ I re­as­sured her, hop­ing I was right.

Later that day we went to our Aunt Pat’s house. Heather, still con­cerned, told Pat what she had found.

“That’s strange,’’ Pat said. “Rowena found a lump in her breast while she was in the shower this morn­ing.’’

Rowena, then 29, was Pat’s younger daugh­ter. She and Heather both went to their doc­tors the next week and were re­ferred to hos­pi­tal for tests.

The shock­ing re­sults came back a week later: they both had can­cer. Rowena’s was grade two and Heather’s a more se­ri­ous grade three.

Re­ceiv­ing two di­ag­noses of can­cer in the fam­ily was heart­break­ing, but for­tu­nately, al­though dev­as­tated by the news, both Rowena and Heather were strong and pos­i­tive. “We can beat this,’’ said Heather, putting on a brave face. “We won’t let can­cer take over,’’ added Rowena.

The con­sul­tant sug­gested Heather have a lumpec­tomy – a sur­gi­cal pro­ce­dure to re­move the can­cer­ous tis­sue – as well as chemo­ther­apy.

“No – I want the whole thing re­moved,’’ she said, not want­ing to take any chances.

So in early 2009 she un­der­went a mas­tec­tomy to re­move her whole breast. Heather found the ex­pe­ri­ence trau­matic, but fear­ing that the can­cer may af­fect her other

breast, she told the doc­tor “I want the other one off as well.’’

“But you don’t need it done,’’ the doc­tor tried telling her.

“Please doc­tor, I don’t want to take any more chances,’’ she said, adamant and scared that the can­cer would re­turn.

Even­tu­ally in mid-2009, she had her other breast re­moved and tis­sue ex­panders – in­flat­able breast im­plants that stretch the skin and mus­cle to al­low for fu­ture, more per­ma­nent im­plants – put in both breasts. Three months later the ex­panders were re­placed with im­plants.

Rowena was also told she also needed a lumpec­tomy, and she un­der­went the pro­ce­dure af­ter hav­ing a se­ries of chemo­ther­apy first to shrink the tu­mour.

Get­ting on with it

Rowena and Heather just wanted to get rid of the can­cer and would ring each other up for sup­port and to talk about what they were do­ing. Even in the face of such ad­ver­sity, they tried to just get on with their lives.

Dur­ing a con­sul­ta­tion with her doc­tor, Heather told him about Rowena hav­ing breast can­cer, and that our grand­mother Mar­garet had died of ovar­ian can­cer aged 64.

“It could be hered­i­tary,’’ he said, ex­plain­ing how a gene could be re­spon­si­ble for some can­cers. “The BRCA1 gene pro­duces tu­mour sup­pres­sor pro­teins. If it’s mu­tated or dam­aged, it al­lows can­cer cells to mul­ti­ply. Your fam­ily should un­dergo a BRCA1 gene test to de­ter­mine if they are sus­cep­ti­ble to can­cer,’’ he said.

First Rowena and Heather got tested for the faulty BRCA1 gene. The re­sults came back and the gene was present in both of them.

Dis­traught but de­ter­mined not to al­low the disease to hit any­body else in the fam­ily, Heather came to visit im­me­di­ately and told Lind­sey and I what the doc­tor had told her.

We weren’t shocked as we guessed there must be some­thing in the fam­ily gene pool that was caus­ing the can­cer. We got ge­neti­cists to trace our fam­ily tree. We knew that our grand­mother had died of can­cer, but they found that six women – four of our grand­mother’s sis­ters and two cousins – had died of ovar­ian can­cer too, and the youngest had been 49. It felt like can­cer was chas­ing us.

One day in Septem­ber 2009, Heather dropped by. “I want to tell you some­thing,’’ she said. “Since can­cer seems to be in the fam­ily I sug­gest you get tested too.’’

“Well, if you can go through chemo and a mas­tec­tomy, then we can find this out for our fam­ily’s sake,’’ I said, think­ing of my hus­band Alan, 53, and chil­dren Zak, 17, and Zoe, 15.

The test was con­ducted free of charge at St Mary’s Hos­pi­tal in Manch­ester. I had to visit a psy­chol­o­gist be­fore­hand to make sure I was in the right frame of mind to deal with the re­sults, what­ever hap­pened. The blood test was a week af­ter that, and the re­sults were sched­uled to come back four weeks later.

Wait­ing for the test re­port to ar­rive was gru­elling. I had four more weeks of coun­selling be­fore I was given the re­sults and while I was brac­ing my­self for the worst, I was also hop­ing and pray­ing that maybe the can­cer would have dis­ap­peared from our fam­ily line.

Clutch­ing Alan’s arm, I felt clammy and ner­vous when I went to pick up the re­sults.

“I hope it will be all clear,’’ I kept say­ing to my­self. But I was in for a shock.

The doc­tor who handed over the re­port to me was very mat­ter of fact. “I’m re­ally sorry,’’ he said. “You have the BRCA1 gene.’’

Alan took my hand, giv­ing me his sup­port. For a mo­ment I felt al­most dizzy. The news was like a hard punch de­liv­ered to my stom­ach.

It can’t be, I thought. Maybe he was read­ing some­body else’s re­port. “Are you sure?’’ I asked the doc­tor. “Yes,’’ he said, un­able to soften the blow. I still could not be­lieve it. There had to be some mis­take. It was as if my mind was re­fus­ing to ac­cept the fact.

Alan tried hard to pacify me. “You don’t have to worry. Noth­ing’s go­ing to hap­pen to you. You will be fine,’’ he kept say­ing.

I later found out that five other mem­bers of the fam­ily – Rowena’s twin Caro­line, her sis­ter Me­lanie, their mother Pat, my mum and my un­cle – also had the faulty BRCA1 gene.

The psy­cho­log­i­cal ses­sions I un­der­went be­fore get­ting the re­port were help­ful be­cause they kind of pre­pared me for this but still, hold­ing the re­port that said I was at ex­treme risk of can­cer was dev­as­tat­ing.

While dur­ing the coun­selling ses­sions I was sure I would have ev­ery­thing done to min­imise the risk – a dou­ble mas­tec­tomy and my ovaries out straight away – in ac­tual fact I re­acted very dif­fer­ently when I re­ceived the re­port.

When doc­tors asked if I wanted to have a

‘I was brac­ing my­self for the worst, but I was also hop­ing and pray­ing that maybe the can­cer would have dis­ap­peared from our fam­ily line’

mas­tec­tomy, I im­me­di­ately de­clined. I was ter­ri­fied, but not ready for such a dras­tic step.

“You should think about hav­ing your ovaries taken out, as you have a 65 per cent chance of get­ting ovar­ian can­cer,’’ the doc­tors told me. I al­lowed that to sink in and then fi­nally agreed.

I had the op­er­a­tion at the Royal Pre­ston Hos­pi­tal, and was out the next day.

Pat, Heather and my cousins, not want­ing to take any chances, had im­me­di­ately opted for dou­ble mas­tec­tomies. But I was too scared to go through with the ma­jor surgery.

“I can’t do it,’’ I sobbed to Alan. “That’s all right,’’ he soothed. “Let’s go back to your

ge­net­ics coun­sel­lor and see what she says.’’ I nod­ded silently then made an ap­point­ment.

The ge­net­ics coun­sel­lor was very kind and went to great lengths to put me at ease when I ex­plained that I was just too scared to go through with the mas­tec­tomy.

“It’s OK, just do what you can do,’’ she said, ex­plain­ing that I could have a mam­mo­gram ev­ery six months to make sure all was well.

I calmed down when she said that, relieved I didn’t have to go in for in­va­sive surgery.

A glim­mer of hope

My cousin Me­lanie booked her­self in for surgery, but had to de­lay it when she found out she was preg­nant. Mum re­fused the surgery, say­ing at 63 she was too old for it, but not long af­ter they found a 7lb (3kg) tu­mour grow­ing on her ovary. She had an op­er­a­tion to re­move it, and thank­fully has been given the all-clear. My other cousin Caro­line had one child at the time and wanted another, so de­cided to have the op­er­a­tion af­ter hav­ing her sec­ond child.

Amid all the neg­a­tive, dis­turb­ing news, there was a glim­mer of hope. In Oc­to­ber 2009, both Rowena and Heather un­der­went a se­ries of tests and got the all-clear – they had beaten breast can­cer.

We wanted to cel­e­brate so I booked a room in a lo­cal pub and had a party for them. I got a friend to make two cakes – with pink rib­bons and their names on. We were all so thank­ful they were still with us.

But by Christ­mas 2009 some­thing wor­ry­ing be­gan to hap­pen. I went round to Heather’s house, and bumped into Pat and Rowena who were vis­it­ing. “Are you all right?’’ I asked Rowena. “She’s got a ter­ri­ble cold and cough but won’t go to the doc­tor,’’ Pat said. “I’ll be fine, it’s just a cold,’’ Rowena laughed. But af­ter Christ­mas when she was still not bet­ter, she agreed to go to the doc­tor.

Af­ter a check-up, the doc­tor said she had to un­dergo some tests be­cause he sus­pected some­thing wasn’t right with her lungs.

Not know­ing what to ex­pect, Rowena waited for the re­sults to come in. And when they did a few days later, she had another shock: there was a nod­ule on her lung – she had lung can­cer.

Rowena was told the lung can­cer was ter­mi­nal, and that if she had chemo­ther­apy it would in­crease her life by only a cou­ple of months, as she’d al­ready had the strong­est chemo avail­able when she had breast can­cer.

We were all dev­as­tated. It seemed so un­fair. Rowena was in tears. She was in love with her fi­ancé John, who she’d known since col­lege, and was hop­ing to marry him that year. “I re­ally don’t know what to do,’’ she sobbed.

John, 33, hugged her close. “I’m sure you’ll get bet­ter,’’ he as­sured her.

Not want­ing to de­lay any fur­ther, they got mar­ried on Jan­uary 30, 2010, but her con­di­tion be­gan to worsen soon af­ter.

Rowena was in and out of hos­pi­tal for the next seven months, but it was clear she was slip­ping away. In July 2010 she passed away

from lung can­cer. The whole fam­ily was shocked by her death. Al­though we all knew she was re­ally ill, we hoped she would pull through.

Mean­while, I con­tin­ued to refuse surgery, and had only the mam­mo­grams and MRI scans. But af­ter one test early in 2011, the hos­pi­tal called me say­ing they had found an ab­nor­mal­ity in my breasts. I was ter­ri­fied.

“Why didn’t I have them taken off ?’’ I said to Alan, kick­ing my­self for not hav­ing un­der­gone a mas­tec­tomy.

Scared and hop­ing it would not be the dreaded disease, I went in for more tests, and heaved a sigh of relief when the doc­tors told me that the sus­pi­cious mass they’d seen on the ul­tra­sound scan was in fact the dye from all the tests they had con­ducted on me, which had col­lected in one area. It had since dis­persed so I had noth­ing to worry about.

Al­though I was relieved, I knew I couldn’t con­tinue like this. It was one scare too many.

Any­thing is pos­si­ble

I de­cided to have the mas­tec­tomy, but I was scared as I had wit­nessed the trauma my aunt, cousins and sis­ter had been through. Af­ter hav­ing surgery they had to spend al­most 12 weeks re­cov­er­ing.

I didn’t want to go through a pe­riod of hav­ing no breasts. But I thought I had no choice, so I booked in for the surgery at Wythen­shawe Hos­pi­tal in Manch­ester.

But the thought of the op­er­a­tion just didn’t sit right with me. A few days be­fore the sched­uled op, I told my GP that I was very un­com­fort­able do­ing this and he re­ferred me back to the sur­geon, Dr An­drew Bail­dam at Wythen­shawe Hos­pi­tal. “I don’t want to have this op­er­a­tion,’’ I said. “What do you want me to do?’’ he asked. “I don’t know if this is pos­si­ble, but I have an idea,’’ I said. “Why don’t you give me a breast aug­men­ta­tion, to stretch the skin, and then give me the op­er­a­tion to re­move the breast tis­sue af­ter­wards?” I asked.

Usu­ally a dou­ble mas­tec­tomy in­volves re­mov­ing the breast tis­sue com­pletely. Then if the pa­tient re­quests an im­plant, an ex­pander is fit­ted. The ex­pander is filled with fluid to stretch the skin to ac­com­mo­date the im­plant and is in place for three to six months. Dr Bail­dam put his pen down and smiled. “It’s prob­a­bly not pos­si­ble,’’ I said. “It might be – in all my 15 years of per­form­ing mas­tec­tomies, I have never done any­thing like it, but I think it is worth a go. I’ll do it, if you are happy to be a test case.’’ “I trust you,’’ I said with a smile. “You came to me with a prob­lem, but you have solved it your­self,’’ he said laugh­ing.

“Well I’m a seam­stress – we don’t cut any­thing off un­til it fits,” I replied.

So in Oc­to­ber 2011 I had breast aug­men­ta­tion surgery, al­though they called it ‘re­ver­sal risk-re­duc­tion surgery’. I went from size 34B to a 34E. The op­er­a­tion was suc­cess­ful, and I was back at work within a week. Then on De­cem­ber 15, 2011, I had the op­er­a­tion to re­move the breast tis­sue.

“It went per­fectly,’’ Dr Bail­dam said. “The im­plant made a pocket, and I could take out your breast tis­sue with­out chang­ing the shape of your breast.’’

I was so relieved, and re­cov­ered quickly. I was able to go back to work af­ter four weeks in­stead of the nor­mal 12 weeks of re­cov­ery. Since then Dr Bail­dam has of­fered the pro­ce­dure to many other women.

Find­ing out so many mem­bers of my fam­ily had the BRCA1 gene has been very hard, but we are com­ing through it, and look­ing to the fu­ture with hope.

We feel like our lives have been given back, and we will be for­ever grate­ful. Now my risk of get­ting breast can­cer has gone from 85 per cent to less than 10 per cent.

● Rachel White, 41, lives in Ac­cring­ton, UK

Rachel poses for the BRCA Babes cal­en­dar 2014, which raises aware­ness about the breast can­cer gene

Above: Rachel (left) with her sis­ters Lind­sey (cen­tre) and Heather two weeks be­fore she had an op­er­a­tion to re­move her ovaries. Left: Rachel thought of her hus­band Alan, and chil­dren, Zak and Zoe, when weigh­ing up whether to have surgery to re­duce her risk of breast can­cer

Rachel en­joyed a hol­i­day in Las Ve­gas with hus­band Alan for her 40th birth­day in 2012, just 10 weeks af­ter her dou­ble mas­tec­tomy

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