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Adrian

 
 WA member - 2010/04/17 19:11 My story so far:

In 2002 I had a malignant melanoma removed from my back just under my left shoulder blade. After removing the mole the doctor then removed a large area of skin which was then tested and came back as clear around the extremities.
I thought that was the end of it, I went back for occasional check-ups which all came back clear.
Just over two weeks ago I felt a soreness in my left armpit while I was on night shift, when I finished work I had a look and was surprised and shocked to see a large lump in my left armpit. As I worked in the north west of WA it took a few days to see a doctor due to it being a weekend. When I did see the doctor she sent me straight home to Perth where I had ultrasound and xray and then finally to the hospital for an excission biopsy.
It was then my whole world turned upside down when the doctor told me the melanoma had come back and was in the lymph nodes of my left armpit.
What I would like to know now is whether there is any support group in Western Australia and also where to get the best treatment and the best doctors to help me through this disease and to beat it.
My doctor has told me there is only one person in WA that he thinks may be able to treat me and failing that he has said he will contact the Melanoma Centre in Brisbane for advice or to send me there for treatment.
I have said to him I will go anywhere in Austalia to get the best treament and doctors to help me.
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Lisa

 
 Re:WA member - 2010/04/17 19:26 Hi Adrian, There are several well known and reputable centres for melanoma treatment in Australia - Peter MacCallum Cancer Centre (Melbourne, Prof Grant McArthur and David Speakman), the Sydney Melanoma Unit (Prof John Thompson) as well as the Melanoma Project at the Princess Alexandra hospital in Brisbane (Dr Mark Smithers). I would urge your doctor to refer you without delay.
As far as support groups are concerned I do know of one that is operating in Perth. While it's facilitated by one of our members it is not an mpa support group, as such. If you contact me on 07 3314 2201 or info@melanomapatients.org I can give you the contact details for the group.
This can be a frightening and confusing time and it would be well worth your while to get in touch with others who have travelled this road before you, either via this Forum or face to face. Keep us posted and I'm sure you have lots of people sending you their best wishes.
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Client706

 
 Re:WA member - 2010/04/18 03:51 G'day Adrian,
As Lisa has said it is best to get your referral ASAP.
I had a mole removed in 1980 which turned out to be malignant melanoma, and then had, like you another wider excision which was clear.
All went well till 2003 when, like yourself I discovered a lump in a node which was removed along with 3 other nodes.
Only 1 node was affected so that was good.
I then participated in a trial of Cancer Vax and have been clear of melanoma since.
All the very best with your treatment and if you would like a chat just message me via the forum
Cheers
Reg
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Adrian

 
 Re:WA member - 2010/04/24 07:26 I'm about to embark on the next stage of my journey with melanoma.
I had a meeting with Professor Christobel Saunders at Royal Perth Hospital.
She will be operating on me on the 11th May to remove all the lymph nodes in my left armpit and also a suspect spot on my back. I will also be having a PET scan to examine the rest of my body to see if the melanoma has gone elsewhere.
Will let you know the results when I find out.
Thanks to MPA and Lisa for all your help so far.
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Lisa

 
 Re:WA member - 2010/04/24 20:17 Hi Adrian, it must be a relief to know that you've mapped out a plan of attack. As for the lymph node dissection I'm sure there are plenty of people who can let you know about their experiences with this type of procedure. Have you discussed the possibility of lymphoedema with your doctor? There doesn't seem to be any rhyme or reason why some people develop lymphoedema afterwards and others don't. Exercise seems to play an important part, and the earlier the better many people say. Good luck Adrian and looking forward to hearing back from you soon. I'm really pleased MPA was able to help in some way.
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Adrian

 
 Re:WA member - 2010/04/25 03:18 Hi Lisa,
Yes I am feeling a little better now that something has started to happen. The possibility of lymphodema was explained to me and how it doesn't happen to everyone but it can't be predicted and it's just wait and see if it happens to me. I was given a leaflet with exercises to do to help prevent it and also prevent frozen shoulder.
If others that have had this procedure could let me know what to expect, that would be nice and help prepare me for it. I did see a photo on this site of someone who had the op and it does look a bit awful but I suppose it's a small price to pay to get rid of the melanoma.
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Client4147

 
 Re:WA member - 2010/04/27 16:09 Hi Adrian

My Husband had 57 Lymth nodes removed in his Axilla Clearance. Once his drains were removed he went straight to the Physio to get it working again. He has manual drainages done once a month by a massage thearipist and he drinks 2 cups of cleavers tea a day.. That is a excellent drink, specially for the lymph system. Just google it and you will learn all about it. Since being on this regime his swelling is good and his arm is working well. Exercise is the key for lymphadeoma and swimming is great. Cleavers is available from any reputable health food store. I wish you well on your journey
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Sherry

 
 Re:WA member - 2010/04/28 21:40 Hi Adrian, watching and hoping your results are going to be the very best news for you. Please keep us informed of how things turn out. All the very best to you. Kelly Hay-Hartley
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Client4414

 
 Re:WA member - 2010/04/29 04:59 Hi Adrian
I am also from Western Australia. Your story is so similar to mine, I had to let you know. I had a painful lump under my right arm, so I went to my doctor about it. Had scans and biopsy done on it and it was malignant. On the 20th November 2009 had an operation and had 18 lymph nodes removed. I feel I have recovered really well from this no swelling, had a drain for 2 weeks, under my arm and round the back of my arm is still numb. Every morning I do a set of exercises just to keep it moving, I also saw the physio at the hospital for some advice.
Only 1 node was found to have melanoma, so then I had a course of Interferon, I did 4 weeks everyday at the hospital intravenously, then the plan was, 3 times a week at home by self injection for 11 months. When I had to do the course at home I had really bad side effects and probably only lasted a month, the doctor took me off it saying, it wasn’t worth me going through those side effects as results show the month intravenously is the best one to do, out of them all.
So now I sit and wait, I have another pet scan in August to see if I am still clear. I go to Sir Charles Gardiner hospital. There is a support group here in Perth their website is
www.melanomawa.org.au.
It is a big shock to the system and at first I was always looking on the internet for survival rates etc, which just makes you feel worse. I think as time goes by and I feel better and better it gets easier but it is always in the back of my mind. I have also got a good dermatologist to check my skin.
Tracey
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Adrian

 
 Re:WA member - 2010/04/29 18:39 Thankyou all for your stories and support. Tracey, nice to see a fellow west australian on here, not sure what type of treatment I'll be having after the surgery but the doctor was talking about the trial vaccine treatments that are around. I had my PET scan on 28/04/10 and hopefully will find out the results soon. I have a meeting with the Melanoma Advisory Service at St John of God hospital in Subiaco on Monday so hope to find out a bit more about the type of treatment I will be getting and work out a management plan.
I also thought I would let you all know a brief personal history.
I am 44 years old and spent a lot of my childhood growing up in Exmouth, Western Australia where most of my time was spent fishing or swimming and wearing no more than bathers or shorts. When my primary melanoma was discovered eight years ago on my back, the doctor said to me then that it would have started to develop when I was a child.
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