Melanoma

Hi Anne,
I posted the same question last week 6 months after yours, I have had no replies so I am presuming there isn't a support group in Ireland for Melanoma....

Hi Ariole,

I don't think there is a support group, unfortunately. I have found the MIF site (melanoma international federation( I think!) a fantastic support. Their website is very easy to access. You can go directly to your own 'stage' and people post about their experiences and also give the best advice. However, it is an American site. Their approach is different to here.

To be honest, I am having more surgery this Thursday for a local recurrence. It was only confirmed last Friday. I am very happy that they can operate so soon for me. I am sick in my stomach over it at the moment and I haven't the mind to post about it. In time I will get back on track and I promise I will have more information for you and be more supportive. I recently approached my consultant and asked a lot of questions about the system here. I have much more confidence in it now.

I hope you are doing well yourself. You are so right to search for support. I truly believe that fellow melanoma patients are the best source of information and support.

Best wishes,

Anne

Hi Anne,
Thanks a million for getting back to me on the subject. I am so sorry to hear of the recurrence, as if you haven't been through enough as it was.
Speaking of recurrence, did you have any treatment after your last surgery? I have yet to meet my Oncologist (Mid Jan) but my Consultant is of the belief that I will not need any and that I will be just monitored as a PET scan showed up clear and that is what I am afraid of is a recurrence.
Best of luck with the surgery and chat to you again soon.

Regards,
Ariole

Hi Ariole.

I had no treatment after my groin dissection, just a 'watch and wait' set-up and three month follow appointments with my dermatologist. After much thought and questioning, I was happy with this option.

I was never referred to an oncologist ... Can I ask you what role your oncologist played in your treatment?

I think I'm correct in saying that there is no treatment for stage three that is of any proven benefit. I did find that any health concerns of mine over the last year were taken seriously by both my G.P. and the melanoma team. Everyone should be on your side.

It is very important to be pro-active and to trust your own judgement when it comes to your body. You are the best judge of how your body feels. I did find my recent lump myself. I thought I was imagining it but I mentioned it to my G.P. all the same. And here we are now, three weeks later, and I'm due surgery on Thursday! Thanks God I found it and didn't delay. It lit up on the pet scan and was the only finding thankfully.

I will tell you more about scans next time I post. I had no scheduled scans since since last year, until two weeks ago.
I'm heading off to bed now! Thanks for your reply.
Chin up and chat soon

Anne

Hi Annie,
I am just messaging you to see how you are doing and how did you get on last Thursday.
All ok with me, still lymphodema in the lower leg and still no appointemnt with Lymph specialist on this.

Hi Ariole,

Thanks for your message. I am doing well. Surgery was straight forward. I was out the same day. I am tired I have to say but I have been overdoing it as usual! I had a day out in Killarney yesterday - no more sympathy for me!

I don't know anything about how the surgery went or what is the next step, etc.etc. I'm happy to take a break from the worrying and obsessing for now. I do have an appointment this friday in the wound clinic but I know from experience that there will be no consultation at this time. This suits me!

I live in Cork. Where abouts are you? I could talk to you about lymphodema if you were interested in getting in touch. Your G.P. should recognise visible lymphodema, I would think, and maybe help get the ball rolling for you. After my groin dissection I had to seek out my own private mld therapist. She is fantastic and genuinely interested in me, as a patient. She will always put my mind at ease, with a quick text, if I am ever anxious about my leg. An occupational therapist in my local hospital monitors my leg every few months now. It is not as thorough or as personal a service as given privately.

Whatever about the medical implications of any lymphoedema you might have, I think that your concern should be addressed by someone on your team. You are new to this, and at the end of the day tis you are the one who is going to have to live with it. You need to be given the tools to learn to do so. After that, it's no big deal and you hopefully won't need to take up their time much in the future. You shouldn't have to suffer unnecessary anxiety either. you've been through enough

Let me know how you are doing. I am glad you are in good spirits.

anne

Hi Ariole,

Thanks for your message. I am doing well. Surgery was straight forward. I was out the same day. I am tired I have to say but I have been overdoing it as usual! I had a day out in Killarney yesterday - no more sympathy for me!

I don't know anything about how the surgery went or what is the next step, etc.etc. I'm happy to take a break from the worrying and obsessing for now. I do have an appointment this friday in the wound clinic but I know from experience that there will be no consultation at this time. This suits me!

I live in Cork. Where abouts are you? I could talk to you about lymphodema if you were interested in getting in touch. Your G.P. should recognise visible lymphodema, I would think, and maybe help get the ball rolling for you. After my groin dissection I had to seek out my own private mld therapist. She is fantastic and genuinely interested in me, as a patient. She will always put my mind at ease, with a quick text, if I am ever anxious about my leg. An occupational therapist in my local hospital monitors my leg every few months now. It is not as thorough or as personal a service as given privately.

Whatever about the medical implications of any lymphoedema you might have, I think that your concern should be addressed by someone on your team. You are new to this, and at the end of the day tis you are the one who is going to have to live with it. You need to be given the tools to learn to do so. After that, it's no big deal and you hopefully won't need to take up their time much in the future. You shouldn't have to suffer unnecessary anxiety either. you've been through enough

Let me know how you are doing. I am glad you are in good spirits.

anne

Hi Anne,
Thats great to hear that you are getting the last op and keeping positive about it all.
I live in the midlands and have had all my surgery in Galway. At the moment I am seeing a physio in my local hospital clinic, the physio was looking into me getting walking properly without a limp until the cellulitis and then the lymphodema set into my lower leg. I got over the cellulitis after 10 days on antibiotics and since that I have the lymphodema, 3 weeks now. Its not that bad but the physio in my local hospital wants me to see the lymph specialist in Galway before she proceeds with any more leg treatment. I should be meeting with them some day this week and if not, it will be on the 19th as I am over in Galway for an Oncologist appointment.
Fingers crossed they will get the lymph moved from my lower leg so I can get back to my local hospital physio to get the ball rolling again. The annoying thing is, my local hospital have a lymph specialist also but are out sick and its indefinitely. I could go to a private physio but because I am still under the care of my private consultant it has been advised against and its still only 10 weeks since my groin dissection.
I'll keep you posted as to how I get on over the next 2 weeks. Just in relation to your lymphodema, do you have a compression garment and how do you feel when you have it?
Chat soon
Ariole