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Post Groin Dissection

March 8, 2013 - 00:20

Hi. I recently had a left inguinal/groin dissection, end of January, for Melanoma that had spread to the sentinel lymph node. Last week I heard that none of the nodes removed were positive for melanoma. I know the news was great (I am grateful) but I'm nowhere near feeling like I can just put it all behind me, smile and get on with it. Does that sound selfish? I feel that's just what is expected of me!
I have little other information on my personal melanoma case, to date. I wasn't prepared with questions on the day I got the results as I wasn't expecting results that same day.
I have to wait 3-4 months for my follow up appointment with surgeon. I've been told that I will be seen by a melanoma follow-up person also, but again, not for another three months. I can not believe the wait! I am very anxious about being cast aside for three months, without further explanation.
I feel very let down by the system, that no-one has once sat me down and spoken to me informatively or caringly about my melanoma. It is a dangerous cancer and I have no doubt that anyone who has ever been diagnosed with it has experienced the fear. There was no melanoma nurse that I could call, no information leaflets etc. etc. etc. My experience has been purely surgical.
It has been a scary time for me. I have (and do still) feel very much alone on my melanoma journey. There seems to be very little support for melanoma patients, in my area at least. There is so much I want to know. So many questions I want to ask. All that said, I have a super G.P. and have found other avenues to seek out information. As for leg lymphoedema, no-one warned me, or ever even mentioned to me that I would be at risk to develop it! (Thanks to the Irish Cancer Society for sending me on their lovely leaflet on prevention of leg lymphoedema )
I would love to hear from anyone who has had a groin dissection for melanoma. I'd be interested in hearing about your personal follow up experience, time-scales etc. I'd also love to hear advice on post-op leg care etc., Do I really have to keep my leg up all the time while sitting?? I braved the cinema last week and it was a disaster trying to keep the leg up!
Thanks, Annio

March 9, 2013 - 12:42

hi annieo. a great source of info for melanoma is the u.s.a based melanoma international foundation(m.i.f).it is run by a lady called cathrine poole ,it has fourms for all stages of melanoma, the patients who contribute are very informed.if you go on there you will get lots of replys to your posts.one lady thats on there is shirley z she has lymphoedema if you post ,ask her to repy she should be able to tell you more.its a great site has separate fourms for different stages of melanoma.glad to hear you have a good g.p. thats a great help.your prob doing this already but ill say it anyway, on the day of your appointments its a good idea to have somebody with you ,and bring them in with you when you go in to speak to the doctors two heads are better than one at picking up whats said.have a go at the m.i.f and see how you get on ill keep an eye out for further posts from you.peace to you and yours rob

March 9, 2013 - 20:04

Thanks a million Rob. I will check out that site and let you know how it goes. I am taking a break from stressing for the weekend - it's a good feeling Best wishes to you. Annieo

March 17, 2013 - 20:04

Hi Rob. I checked out M.I.F. Thanks. As you said, I was able to go straight to the section for my particular stage (IIIb I'm assuming). I have been dipping in and out of the site but I haven't posted any questions yet. I guess, my biggest concern is the lack of access I have to melanoma care. I am wondering is it just the set up in my area/city that is so lacking or is it the same for melanoma patients throughout Ireland? I noticed on the (American) M.I.F. site that patients at my Stage refer to contacting their 'oncologist or oncolocy nurse' for support and advice. I have no such Fairy Godmother/father to guide me! For example, my leg started to feel very heavy and uncomfortable two nights ago, much more so than it has been since surgery. It continues to feel this way. I'm guessing it's the lymph fluid and I'm starting to worry that I may have to take some action soon about it. My frustration at the moment is not so much the physical worry but the stress of wondering who I should call about this! It makes me really angry and I feel I shouldn't have to be taking on this worry on top of everything else. Of course I could go to my G.P. 'again' but to be honest I just can't afford it! I've already been to see her three times in the last fortnight. She assured me that I'm not going nuts or overworrying. She stressed that everything I've come to her about I've needed to come to her about... My medical card application was unsuccessful I've just heard. Somehow they seem to think I have money trees growing in my garden! I am ranting now. To add, I recently received a diagnosis of inflammatory arthritis last week and had to come off the meds I've been on since September last because of the melanoma. As a result I am crippled with discomfort. I have had alot thrown my way recently and I wish the resources were there in the system to guide and comfort me through my melanoma experience. I know there is hope that some day I will be able to put all this behind me but I strongly feel I need to put my conerns out there for a system that seems to let melanoma patients fall through the cracks, possibly because the treatment for melanoma 'is' surgery. That is my experience anyway. I also know the difficulties this country is going through. I certainly am not pointing the finger at individual medical consultants. I'm questioning the lack of care personel available to those patients who need treatment for melanoma. Rant over! I am hoping other people will read this post and comment on their own experiences. I'm also beginning to think that melanoma which has spread to the lymph nodes (as is my case) is not a common occurence in this country? Obviously that is a wonderful thing for those diagnosed with melanoma, assuming most are caught early enough. I would love to hear from people who are at my stage. Annieo

March 19, 2013 - 12:57

hi annieo.sorry to hear the leg is giving you bother i think it would be a good idea to ring the consultants secretary and ask to speak to him/or her or at least one of the team, try and get an appointment outside of your regular one to check out your leg/groin area . a trip to your gp would be helpful to set your mind at ease, if your making an appointment tell the secretary you may not have the fee on the day im sure they will help you out your gp sounds like a nice understanding person.i would sumit another application for the medical card, if you have not done so already contact your t.d. and get him/her to help you with it ,also your gp will be able to help you out with it.phone and ask to speak to the person that reviewed your medical card application or there boss and try and get to explain your case in person often times that helps.dont give up on the medical card keep on to them.dont worry about ranting we all do that at times.ill talk to you soon peace to you and yours rob.

March 19, 2013 - 17:27

Thanks Rob,
I think I will follow up on the medical card application as you suggested. I am feeling a bit better about things now. I feel stronger in myself and am beginning to stand back from my experience and look at it from a better place. (That's how I'm feeling today anyway! ) I have recently had the lucky opportunity to talk to a few kind people who listened, including people like yourself on this forum. It helps alot. Thank you. I will take it slowly and I will make sure (as best I can) that I am better prepared for any future dealings I may have with 'melanoma'. It's difficult when something like this comes into your life without warning.
Thanks again for your support. Hope you are well yourself.
Annieo

November 28, 2013 - 11:49

Hi Annieo and Rob,
I hope all is well with ye.I am new to this site so your help would be greatly appreciated.
I was first diagnosed with Melanoma in July 2013 and have since had a left leg groin lymph node dissection. Drain is out about 4 weeks but now I have a very sore, swollen lower leg since the past 4 days. Yesterday I had an appointment with my consultant she thought maybe it was DVT but thankfully an ultrasound has eliminated that so now I have been diagnosed with Lymphedema.
My consultant wants me to meet with a Lympedema physiotherapist in the hospital, so I am waiting on an appointment. In the meantime, is there anything I could do to eleviate the pain and swelling apart from wearing a compression stocking, light exercise and elevation.
All I am hoping is that this doesn't get any worse and that I can get back to a normal fit life.

Regards

November 29, 2013 - 00:37

Hi Ariel,
I just spotted your message, but unfortunately, I don't have much time to give much of a reply right now. I am very impressed with how calm you seem. You are much braver than I was! Well done you.

My lymphoedema was never in my lower leg. For me, elevation was the best relief and rest (though too much rest isn't good). At the moment I need to wear a compression garment always. I have a lot of discomfort in my thigh. I am thinking now it is nerve pain. The compression seems to be the only thing that relieves the pain. I have no visual lymphoedema.

In summary, elevation and compression garments are a great place to start. Pain killers might help? Your therapist will show you how to self- massage. If she doesn't, tell her you want and need to know how. The self massage takes less than 3 minutes in the morning!

I hope this is of some help to you. Please ask any questions you need to. I will hopefully have more time next week to think about what i'm typing! Best of luck for now,

Anne

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