Melanoma with an Unknown Primary
Beth Bastick’s Story
Melanoma has changed my life. I have gone from a happy young grandma travelling around Australia in a caravan with my husband to an emotional fearful old lady. Now that's just the bad days but there are heaps of good days too. I am a fair skinned with freckles red head who in my young days did get sunburnt to a blistering peeling stage. That seems to have been the trigger for me.
My melanoma story started in Dec 2013 when I found a small firm lump behind my right ear. Then in Jan 2014 I found a much larger lump in the right side of my neck. We had reached Sydney after travelling around Australia and we were planning on stopping there for Christmas.
I asked my daughter for advice as she is in the medical profession. After blood tests, ultrasounds, scans and biopsies I was referred to a Head and Neck surgeon. A PET scan followed and the biopsies were inconclusive. The surgeon was sure it was cancer but not sure which one. I have never smoked and hardly drink and I had nothing on my skin to cause alarms.
A modified neck resection was the next step. The lump behind the ear was in the Parotid gland and the one in the neck was the lymph node. The surgeon removed all of my parotid gland, all of the neck lymph nodes but managed to save all the blood vessels and nerves. Recovery from the surgery was routine.
At my two week post op check check-up the surgeon gave me my results:
Metastatic Melanoma stage three.
My feelings at this time are hard to describe. Absolutely shattered, unable to stop crying and total non-belief as I didn't realise that you could have melanoma without a primary lesion on the skin.
The Internet can be your best friend and your worst enemy at a time like this. I would lie in bed at night googling when my husband was asleep. There were some horror stories but it was also a brilliant tool for educating myself.
Four weeks after surgery I started six weeks of daily radiotherapy. Having the treatment is easy except for the mask that fits firmly over your face and holds you in position. After about three weeks the side effects start. Loss of taste and what you can eat tastes rotten, the skin of the treatment area becoming red and weepy. Won't go into any more of all that. The radiotherapy has left me with ongoing problems. It has made my neck hard, tight and stiff. My shoulder has given me lots of problems with pain and lack of movement. Physiotherapy and pain medication has seen that improve heaps.
Apart from an infection in the treatment area six months after I completed treatment which saw me in hospital for a week my recovery has been good.
I have learnt that approx. 15% of all melanoma patients don't have a primary area on the skin. I have been told that I may have had an area but my body’s immune system made it regress. I have had five areas biopsied on my skin and one result came back with atypical cells but not melanoma. I have had my eyes checked as you can have a melanoma in the eye.
I have six monthly PET/CT scans which after just having had my 18 month scan all is clear.
The greatest risk time for recurrence is the first two years.
We have moved back to Tasmania and we just get on with daily life. We live a very quiet life and I am only now feeling strong again.
I feel that if it does recur that there are treatment options now that were not available five years ago. I have an oncologist at The Melanoma Institute who is at the forefront of research and treatment. I have four monthly check-ups with my dermatologist.
This rotten disease has changed my life. It is in your thoughts every day. I do enjoy life again but it is a different life and a different enjoyment.
At 22yrs I had a small pink nodule (Nodular Melanoma) on my neck, just behind my ear. My hairdresser commented on it and said it needed to be checked as it went red when she washed my hair. I promised I would have it checked but I didn’t. Over a period of several months it started to turn dark and grow larger, growing down my neck. Although it wasn’t very big, less than 3mm, people started asking what was on my neck - had I put permanent marker by accident? I finally went off to the doctor and he referred me to a skin specialist and it was removed as a precaution. 10 days later I was told it was a Melanoma and I needed further surgery. I had to have 6 weeks off work due to the extensive surgery. At this stage the margins seemed clear (what the pathologist tests to see if they had removed all of it), and a full check-up was required for the next 5 years before I finally got the all clear. 28 years later almost to the day, a melanoma presented in my gallbladder. It was found by accident after routine surgery. Samples of my original Melanoma were located and tested against the new tumour and there was a 95% DNA match to my original Melanoma. I am now stage IV cancer, living a life of uncertainty.
Melanoma is such a dangerous disease, which can lay dormant and show up years later. Prevention is better than living on a knife’s edge, wondering whether it has returned. Once it has spread internally, Melanoma usually has no symptoms, other than tiredness, unless it presents in an organ that causes you problems. Get to know your skin, have regular skin checks with someone who specialises in skin and always go to the doctor if you notice any changes. Early detection may save your life, don’t leave it like I did and please don’t get sun-burnt. Slip on a shirt, slop on sunscreen, slap on a hat, seek shade and slide on sunglasses, and most importantly protect your children’s skin. Only 10 minutes in the sun will give all the Vitamin D your body can absorb.
When I was invited by Di Mason to help establish Melanoma Tas with 5 other like-minded people, I jumped at the chance. I am passionate about offering emotional support to those affected by Melanoma and Metastatic Melanoma, as well as educating the public on the dangers of Melanoma. Melanoma Tas is an absolutely vital service for Tasmania, offering support, education, information and hope to Melanoma patients and their families.
Carol Hill's Story
Looking back some 7 years, I was totally unprepared for the words ‘sorry, it’s a level 4 malignant melanoma’ when I discovered what I took to be a cyst in the middle of my back.
When it didn’t burst, a little voice told me to get it seen to.
Very wise little voice.
Fortunately I followed all instructions as regards check-ups following its removal, but it would have been so easy to just skip them.
After all, I felt fine, and in hindsight was blissfully ignorant of just what a level 4 malignant melanoma was, because at no stage did anyone hand me any information, or enlighten me to just what a killer melanoma can be.
It was only when Dr Graham McCrory took over my check-ups that I began to fully understand just how serious it was, and how important follow-ups are. Or how many people die each year from melanoma.
As a result, I wholeheartedly support the formation of Melanoma Tasmania as there is such a need for information and support.
And I encourage everyone to have their skin checked regularly – just in case.
Because you just never know.
Ken Harriss' Story
We often talk about the “What were you doing when xxxxxx happened”, for me that's how I now remember October 29 2012. It was the morning barely 24 hours after spending an uncomfortable night in the casualty department after a seizure I'd had at home.
I was phoned at home by my GP to say that the little lump on my right temple, which was “nothing to worry about”, and had been removed the previous Saturday morning was in fact a malignant melanoma and an appointment had been made to see a surgeon that afternoon.
I was told after multiple scans and tests that I had stage 3 malignant melanoma and my wife asking the question of the surgeon, “How serious is this?” To which we were told, “You’re not a train wreck yet but the wheels are seriously wobbling on the track” and “you have about a 40% 5 year life expectancy.”
Since that time I have cried a few times, (mostly from either stabbing or biting my lip due to some transient nerve damage post surgery), been exhausted a lot of the time, searched the world according to Google for positives about my diagnosis (didn't find many of those), had family say that they couldn't bring themselves to hug me after my surgery and after approximately 8 months I had my cancer return and a revised diagnosis of stage 4 metastatic melanoma. I should also point out that with the diagnosis of stage 4 Metastatic Melanoma came the statement that our goals of treatment are no longer curative but focused on life extension. No matter how long the letter, your eyes tend to go back to the word, “Terminal”.
Try and pass that message on to your children, parents and siblings, I can assure you that it’s not easy, nor is the answering of the endless questions by all the people that love you or listening to all of the abstract references to “cures” that people have heard of and swear that they work.
But it would also be wrong of me to say that I feel nothing but doom and gloom about the situation I am now in, I can honestly say that I don't ever recall thinking “why me”, “sh&# happens” has crossed my mind a few times as well as F@!# what else now” but not “why me.”
This whole journey has however enabled me to:
- meet so many truly remarkable people living with their cancer.
- be cared for by the amazing staff and volunteers at places like the Royal Hobart Hospital and Peter MacCallum Cancer Centre.
- the ability to find my own strength thanks to my family and I now know that have some of the most fantastic friends in the world and I have had the opportunity to make fantastic new friends.
You know I once described the situation as being the closest you can be to feeling like a person on death row without actually being there, you know that death is coming you just don't know when.
But I now believe that we in some ways are the lucky ones because my above statement is actually true for all of us regardless of age but the vast majority of people choose to ignore this fact. For some of us the veil is lifted so we now have the chance to seize the day and live our lives hopefully to the full.