Introduction

Hello and welcome to my website and thank you so much for taking the time to read my story.cancer-of-unknown-primary-cuppa

I wish I didn’t have this website because that means I have been on an unwanted and unexpected cancer journey.  But I am also so grateful that I am still here to tell my story and offer hope and help to others through their journey.

My name is Robyn Wagner and I live on the beautiful and sunny Gold Coast in Queensland, Australia.  I consider myself to be a ‘young’ and reasonably fit 52 year old.

In January 2012, I felt a lump at the top of my neck, under my right ear.  I didn’t feel sick and the lump wasn’t sore to touch so I wasn’t concerned.  After a visit to my GP, then a referral to a specialist who performed an ultrasound and then a biopsy, it was confirmed I had Squamous Cell Carcinoma (SCC for short). This was the secondary site of my cancer, so the following weeks involved numerous tests, trying to locate the primary source of my cancer. I was eventually diagnosed with C.U.P – Cancer of Unknown Primary.

Then my journey began!  I was very confused and felt alone as I didn’t know anything about cancer, let alone the terminology being used and I had no idea what was ahead for me. I was told I needed 3 months off work, a very difficult sentence to comprehend. I felt as if all of a sudden, time stood still for me – I went numb!!  A few weeks later I had a radical neck dissection, where over 60 lymph nodes were removed from the right hand side of my neck and six weeks later, I had six weeks of daily radiation treatment in Brisbane.

Therefore, I have developed this website for two reasons:

1: to help other C.U.P. patients understand more about Cancer of Unknown Primary. Going public is a scary process however I am determined to continue to advocate for cancer of unknown primary, help inform other C.U.P. patients of what is ahead for them and offer as much hope and support as I can.

2: raise awareness of C.U.P. and get the message out that more funding is needed to increase research opportunities.

I received amazing care from all the medical people who looked after me throughout the different stages of my operations and treatment.  However, due to the fact C.U.P patients don’t know the origin of their primary cancer site, I feel C.U.P patients are often left without access or knowledge to newer treatment options. In my opinion, C.U.P. is considered to be in a minority group and we are treated and then put to one side until the cancer reappears and then the next course of action is determined.  With further funding and research, the mystery of C.U.P. should be able to be solved.

How many C.U.P. patients are not with us now, because the medical staff did not know what tests to perform, because they did not know what they were looking for?  Is the medical equipment and tests available in Australia up to the same standards of overseas countries? There is a lack of an evidence base to support funding decisions.  Therefore more funding is required.

I believe  patients diagnosed with C.U.P need specialist advice and support at an early stage, and medical staff  regularly updated and informed about C.U.P,  so that tests and treatment options can be pursued rapidly and extensively. While other cancers have specialist oncologists and specialised nurses, the CUP patient is often left alone.

One of the specialists I saw said statistics show most C.U.P patients have a 2-5 year survival rate and I will never be told I am ‘in remission’ because I am C.U.P patient but if I can get to 5 years cancer free “I should be fine”! This is not good news to carry around in your head!  So I have decided to prove them wrong and live a very long, happy, healthy life.  My cancer was just an annoying speed bump that may have slowed me down for a few months but I going ahead now, faster than before.

Please note, this website is my story, in my words and I strongly advise you to always seek your own professional medical advice.  Your qualified health professionals will advise you on your diagnosis and the best treatment for you.  However, I hope this information will answer some of your questions, help you think about questions to ask your doctors and also give you hope that you are not alone on your journey.

I kept a daily journal throughout my cancer journey.  I have named it ‘The Dragonfly” and the significance of the title is revealed in my journal.  It really is amazing what I learnt on this cancer journey, especially about myself, what helped me through some very scary times and who I have become now.  I am hoping to have this available soon.

Towards the end of my treatment, I really started to reassess my life, what I have achieved so far and what I still want to achieve so I created my ‘bucket list’ which you can see here.

Again, please be reminded I am not a health professional, and do not hold any medical qualifications so please refer any concerns you have to your GP immediately. The Reference Material page has links to where I obtained some of the information used on my website and where you can go to for help and guidance. The Cancer Council has a free C.U.P. Booklet available by phoning 13 11 20. Or you can view it here.

Depending on your health professional, they may use other terms to describe your cancer diagnosis, including occult primary cancer, tumour of unknown origin or metastatic malignancy of unknown primary.  To be consistent and relevant to my journey, I will always refer to it as Cancer of Unknown Primary or C.U.P

Part of me thanks cancer for coming my way because now I can cross that off my worry list.  I don’t have to worry now that I hope I never get cancer – been there, done that LOL!!

Thanks to cancer I have met so many wonderful and amazing people and now I feel I am a stronger and better person for what I have been through.   I am just sorry it caused my family and friends to suffer with worry. I truly believe – Changes make you grow, challenges make you stronger.

I pray and hope that something positive can come out of my C.U.P. journey and I can make a positive difference in the fight and awareness of C.U.P. My mission is to raise awareness for C.U.P and also have a support network for C.U.P patients and their family and friends.

Remember, no matter what your battle in life is – you are not alone!  I am here for you. You may have your family and friends to help you, you may not.  But always remember, you do have me, and God, along with you on your way!

Please feel free to contact me anytime, I would love to hear from you and will always treat our conversations strictly confidential.

Remember my motto –  LOVE   DREAM   BELIEVE

Love yourself – Follow your Dreams – Always Believe in the magic

 

To distinguish between my own personal comments and the facts that I have researched throughout this website, my own words will be in Italics


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