Rare Cancer Day September 30th

This year I want­ed to add my voice to the one of #RareCan­cer­Day.
I’ve copied NORD’s ques­tions and my answers here. Want to par­tic­i­pate by shar­ing your Rare Can­cer sto­ry?
Head on over to NORD.

Tell us your first name, where you are from and the name of the rare cancer that has affected your life and impacted you?

Hi my name is Jen­nifer! Despite my pass­port say­ing I’m a US-Cit­i­zen I was born, raised and have lived all of my life in Switzer­land. At age 9 I had to have liv­er surgery to remove a Hepa­to­cel­lu­lar Ade­no­ma (benign liv­er tumor). 5 years lat­er – 3 months before my 14th Birth­day and just before I was cleared for any tumor reoc­cur­rence – I had to go in yet again to have liv­er surgery.

This time the diag­no­sis was Hepa­to­cel­lu­lar Fibro­lamel­lar Car­ci­no­ma. Fibro­lamel­lar is a very rare, aggres­sive and to date incur­able liv­er can­cer. I feel extreme­ly lucky to be Fibro­lamel­lar free. It’s been 22 years with no fur­ther treat­ment. Close and reg­u­lar screen­ings how­ev­er were very much a part of my life from then on out. A year after my 2nd liv­er surgery and due to my mom hav­ing med­ical issues too, we were then diag­nosed with Car­ney Com­plex (read here). By par­tic­i­pat­ing in clin­i­cal stud­ies I now know my liv­er occur­rences and my spe­cif­ic case of Car­ney Com­plex are connected.

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What is the one thing you’d like people to know about what it is like to live with a rare cancer?

I have two things I’d like to say.

The first being that to date, the approach of treat­ing rare can­cers has not real­ly changed much. The sur­gi­cal approach for my liv­er sugery to remove the Fibro­lamel­lar was exper­i­men­tal at best. It was designed for more com­mon can­cers and benign tumors. Even the sur­geon was­n’t sure on how much time I’d still have and how suc­cess­ful it would be. To say I’ve been very lucky is an under­state­ment really…

#RareCan­cer­Day brings atten­tion to the fact that with­out research fund­ing, the only option for patients is to endure blan­ket ther­a­py regimes that are designed for oth­er types of can­cers and, as a result, patients typ­i­cal­ly do not have high sur­vival rates.

Court­ney’s Story

Sec­ond­ly… I’m not one to sug­ar coat my words…
One of the hard­est lessons I had to learn is that Death and Dis­ease do not care about your age. The ques­tion of ‘When you get to meet them?’ is not reserved for old folks. They show up unin­vit­ed for cof­fee or tea. If you are not care­ful, they’ll find your stash of favorite cook­ies and try to eat all of them. You know, the ones that make you close your eyes and grin while you focus all your atten­tion on expe­ri­enc­ing the intense fla­vor of JOY.

From the moment you are told that it is can­cer, rare and suc­cess of treat­ment is extreme­ly small, Death and Dis­ease become your trav­el com­pan­ions. Show­ing up every once in a while – unan­nounced of course – and most cer­tain­ly always then when you are most unsure of the path ahead. It is then up to you how many of your favorite cook­ies you are will­ing to share with them. 

Joy is found everywhere – even in the presence of death and disease.

Get­ting this kind of news is hor­ri­ble. No doubt. It does how­ev­er open you up to real­ly start appre­ci­at­ing the lit­tle things in life. You learn to be more grate­ful every day for every minute. In doing so dis­cov­er­ing many more fla­vors of ‘cook­ies’. That’s when it becomes eas­i­er to share. Once you get to know Death and Dis­ease they real­ly aren’t that bad trav­el com­pan­ions. Despite what peo­ple might say or think. In fact because of them I stopped buy­ing into this sil­ly notion of ‘There is only one way to expe­ri­ence joy: Avoid­ing talk­ing about Death and Dis­ease’. Both of them will always be there. As you walk your path in life you can choose to have them lurk­ing behind you and con­tin­ue to be scared of them or you can occa­sion­al­ly allow them to ascort you part of the way by accept­ing their presence.

So please, stop telling me that ‘I‘m too young to be this sick‘. Let’s stop this roman­ti­cis­ing of young peo­ple nev­er get­ting a life threat­en­ing dis­ease. Instead let’s start accept­ing it as a part of them. If you’re invit­ed over for ‘cof­fee and a chat’ I kind­ly ask of you to not ignore Death and Dis­ease (even if they show up unan­nounced) but include them in the con­ver­sa­tion. There are enough cook­ies for every­one, I promise!

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What does diagnostic access mean to you?

Diag­nos­tic access means access to reg­u­lar screen­ings. Reg­u­lar screen­ings up the chance of find­ing fibro­lamel­lar ear­ly in the game. It also offers the best oppor­tu­ni­ty for treat­ment. That kind of access gives peo­ple like me some lev­el of con­fi­dence this type of can­cer can be caught before it caus­es wide­spread symp­toms. In turn that then gives me the con­fi­dence to lead some sem­blance of a nor­mal life between my screenings.

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