Home Forums Newly Diagnosed Stage III/IV six months after groin dissection

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  • #21505
    Annieo
    Participant

    Hi there,

    I had a left groin dissection done on January 31st last. Now that I’m six months over the surgery I am curious to see what symptoms other people had/have in their leg.

    For me, my leg often feels fine, especially while wearing a compression garment, but other times my front thigh can get very prickly, heavy and uncomfortable. (I really don’t like these symptoms.) It is in this area (front of my thigh, closer to the knee) where I have had symptoms from the beginning.

    As I’ve already mentioned, wearing the compression garment lessens the symptoms. My MLD therapist tells me I have pockets of lymph fluid around my thigh. However, the area she shows me, as having these pockets in, is not where I get the pain and discomfort. Could it be that my usual symptoms are not from lymphedema and are from nerve damage? I’ve always assumed that the symtoms are as a result of the lymph fluid being compromised but now I’m wondering could they be nerve damage from the surgery. Another therapist, that I attend, says that the nerves can get bruised easily post surgery because they have been damaged. I’m thinking now (while using my wild imagination) that maybe the pain actually is nerve pain and that the symptoms come and go according to what activities I do in the day.

    Both therapists I attend seem to have different opinions on different things. (One is private and the other is through the hospital) Sometimes when I’m asking them questions about my leg, I remind myself that they couldn’t possibly know what I’m feeling, having never had the surgery themselves. I am thrown by the fact they have different opinions. That includes my consultants and g.ps. I wonder, do they really know themselves about the post-op experience.

    So again, I’m asking what are other people’s experiences?

    Also, my inner ankle has swelled since last month. One says it’s fluid swelling, the other says it’s not – that it is bone change (I have rheumatoid arthritis also). I’m not too worried about my ankle because I’m almost certain it’s lymphedema and not bone change. I have been exercising a lot more than usual and being good about wearing my compression garments. All my efforts seem to be helping my ankle, thankfully.

    Thanks a million,

    Anne (Ireland)

    #62082
    Thandster
    Participant

    Hi Anne,

    I had my surgery on Dec. 28, so about the same time as yours. I had the groin dissection on both the right and left sides. I certainly do know the tingly and prickly feeling you’re talking about. I sometimes get a stabbing feeling, others a burning sensation, it is all over the board. im no doctor or anything, but I don’t believe any of this is related to the lymph fluid in any way. I think it is entirely nerve related and I dont think your therapists can possibly know. Even from my right to left leg the sensations i get are COMPLETELY different.

    The doctor tells me everyone is different. Sometimes the nerves recover, sometimes not. It can take months or years. So I’m proceeding as though this is how it will be and if it improves, then I’ll be pleasantly surprised;))

    Good luck,

    Thandster

    #62083
    Catherine Poole
    Keymaster

    Shirley is probably our best expert here, but here is a resource you might try:

    National Lymphedema Network

    116 New Montgomery Street, Suite 235

    San Francisco, CA 94105

    1-800-541-3259

    415-908-3681

    http://www.lymphnet.org

    A non-profit organization founded in 1988 to provide education and guidance to lymphedema patients, health care professionals and the general public by disseminating information on the prevention and management of primary and secondary lymphedema.

    #62084
    goldfidler
    Participant

    Knowing what you know now and what you are feeling now, if you had to do it all over again, would you? I was just given the news about a positive SNB and the recommendation is for a right groin dissection. Based on everything I see and learn, I would love to hear your opinions. Thank you and may you be well soon. – Matt

    #62085
    Catherine Poole
    Keymaster

    Did you have micro or macro mets? In how many nodes?

    #62086
    Annieo
    Participant

    Hi Matt,

    Sorry you’re in such an unfortunate place at the moment. It is not nice to hear that your sentinel node is positive when you had been hoping for negative :( But we do what we have to do I suppose, and for me, that was the groin dissection. The surgery for the groin dissection was a good thing for me, in theory even. It was something for me to focus on at the time. As you know, in the beginning, it’s all go, go, go!

    To answer your question, yes I would definitely go through it again. For me, learning that my sentinel node was positive made me feel I had no choice but to act. I couldn’t justify sitting back and doing nothing.

    The surgery was fine really. I had one or two set backs but that can happen with any surgery and they are all in the past now. Pain killers are great. I think, for me, it was the worrying and the lack of knowledge about the details of my surgery that was the worst. If I had my time back again, I would ask all my questions, no matter how silly they sound. Some surgeons and consultants speak an entirely different language!

    As for the after effects of the surgery, I wear a compression garment all day every day. You will have read in my original post that I have discomfort and sensations (that I do not like) in my left thigh. The reason I say I don’t like them is not because they are a set back to me in anyway, it’s just a matter of an ‘association’ with my melanoma. When I wear my stocking my leg feels completely normal, except for the feeling that I’m wearing a supportive stocking. I like wearing it to be honest.

    I also learned, through seeking much information through an MLD therapist (manual lymphatic drainage therapist) and through my own experience over the last eight months, that my lymphedema is very manageable. In fact my therapist is very happy with me. She says ‘it’s after settling down very nicely’. That is good enough for me. I have never visually seen swelling but have been told by a few that it is there. It is still new enough to me that I’m not too sure about the future with it. I have decided not to think too much about what might be. I will concentrate on the fact that I am doing everything I should be doing to prevent and manage it.

    If you decide to go for the surgery, you will probably have many more questions down the line. My advice to you would be not to think too far down the line. You won’t need to worry about your leg until a few weeks after the surgery.(That’s what my surgeon told me) Concentrate on your decision now and then the surgery, if you decide to have it. I wish you a lot of calm and peace of mind at this time.

    For anyone else who may have read my original post, re. my swollen ankle and my leg symptoms – I asked my G.P.why everybody seems to have contradicting ideas about what is the cause of them. She said, the honest answer is that nobody really knows! Just as I thought! I appreciated her honesty :)

    Best wishes to you Matt,

    Anne

    #62087
    goldfidler
    Participant

    Catherine: I had tumor material in 3 of 5 nodes. The two most significant were 3.5mm and 6.5mm. I am very clearly in the high risk category. Negative lungs and liver. I guess I am just trying to deal with the news and determine the best steps for me and my family.

    Annie: Thanks for the reply. I appreciate your insight. For me, I already have a little swelling and pain in my upper thigh from my SNB which was 11 days ago. This leads me to believe that lymphoedema is going to be a major issue for me if I have the groin dissection which is even more invasive. It seems as though almost everyone has it following the groin dissection. My concern is where does it stop? To remove the primary site, I had to have a TMA on my right foot. Then the SNB. Now the groin dissection. Then probably a trial study.

    While there are some success stories of people getting 10-20 years, the reality for the majority of people is less. I am just trying to think of maximizing quality life versus increasing life span but with the majority of that increased time spent healing, recovering, and getting more tests and more surgeries.

    As I mentioned in my other post, I am literally 24 hours into the thought process of having the positive SNB and the recommendation for the groin dissection. I am otherwise very healthy and wonder what the alternative of “do nothing and see what happens” would look like.

    It really helps me to have this forum to ask others who have been through it or are currently going through it. So many of these wonderful people have been through so much more than me. And they are still fighting on. I guess I am just thinking out loud (or online) at this point to get my bearings on what to do.

    Thank you both for sharing your thoughts with me.

    Matt

    #62088
    Annieo
    Participant

    Hi Matt,

    I didn’t know about the 10-20 year statistic. I tend not to look at statistics as everyone is different and I really think it’s all down to luck in the end. Not even the specialists can predict our future. Statistics are a bit scary too!

    You reminded me that yes, initially, I did have swelling on my outer thigh after my SNB and extra swelling around my buttock after my groin dissection. But that has all gone now. I was very alarmed at the time, worrying that it was lymphedema and even more frustrated that the doctors didn’t seem in any way concerned. The swelling all settled down Matt after a few weeks, and as you can see, I had even forgotten about it!

    My guess is that 11 days post SNB is likely too early for you to start getting alarmed. Give yourself time to heal. I really think have to expect some degree of swelling after your surgery and remember the groin dissection is a major surgery where nerves, tissue and God knows what else will have been disturbed. As regards the lymph fluid, it will need time to find a new channel for it to travel to its destination. The fluid won’t learn where to go overnight!

    And remember, there is usually swelling after any surgery. Of course it should be monitored if it continues. If you’re like me you are being super concerned about any swelling or sensations being lymphedema? I know it is so easy for me to be so calm and confident now, after the event and I know and understand that you are in a different place to me.

    I’m thinking that if you are panicking about lymphedema go and talk to an MLD therapist. You may have to seek one out yourself. Prepare yourself with a long list of questions. (I had many!) I found that after my first consultation with my therapist I could finally relax some bit about lymphedema. The compression garments are great. And the fact that you are so healthy and active otherwise is great. I have rheumatoid arthritis and can’t do much exercise but I do my best to keep pottering around to keep the fluid moving. But I think you should worry about these things later. Just know that lymphedema is usually very manageable. You will read horror stories about everything as some people will be unlucky in their experiences.

    I don’t think that my groin dissection particularly has changed my quality of life, having recovered. You won’t be able to run or do high-impact activities and you won’t be able to sit in a Jacuzzi. Ask a therapist and find out information specific to your own life style.

    I hope this is of some help to you. As I said, I don’t think anyone can say for sure what the best decision for anyone might be, when it comes to melanoma. Empower yourself with information and do what feels right for you.

    Best wishes, Anne

    #62089
    goldfidler
    Participant

    Hi Annie…

    I was reminded today by a friend (Charissa) that I needed to revisit the forum and update everyone. While I was trying to determine my future plan in August, you and others were there to help me out and share your experience. Your advice was invaluable to me and I cannot thank you enough. This forum is so helpful.

    I thought I would post an update for you and others. As a reminder, here is my timeline:

    – June 19th 2013: Diagnosed with Stage 2 melanoma in my right foot

    – Aug 12th: Transmetatarsal amputation (TMA) on right foot and an SNB. SNB ended up being positive in 3 of 5 nodes.

    – Sept 11th: Lymphadenectomy (groin dissection) on right leg, which removed 8 nodes and all were negative.

    I am now 16 days into recovery. I have some swelling in my right leg, but nothing really bad. I had the staples removed from the incision two days ago. I still have 1 of the 2 original drain tubes in my thigh. I accidentally pulled one of the drains from my leg during sleep after the 7th day. My leg has a little pain, kind of tingly and prickly. Not sure if the pain is nerves or the sartorius muscle. I think that the combination of the TMA and then the lymphadenectomy slightly slowed my rate of recovery but I am getting on track. I am starting to walk and exercise a little. Excessive standing or walking increases the swelling so I try to keep it in moderation. I have a compression sleeve, which I kind of like. However, until the other drain is removed, I can only pull it up to mid-thigh so there are marginal benefits right now. I guess I need to be patient.

    Your story inspires me to look forward and focus on the now..

    Thank you!!!

    Matt

    #62090
    Catherine Poole
    Keymaster

    I always think of how the word “patient” means to be patient! A lot is asked of us as patients and we are very compliant. All sounds good for a not so pleasant experience! Thanks for the update and I hope you have a smooth recovery.

    #62091
    Linny
    Participant

    The trick with the lymphedema is to stay on top of it and get familiar with the early symptoms. I would see a therapist as soon as I was healed to get some baseline measurements, and two compression garments. Why two? So you can use one while the other is in the wash. ;) A good therapist educate you about the condition and tell you what to look out for.

    #62092
    Annieo
    Participant

    Hi Matt,

    Thanks so much for the compliment. It’s nice to be able to talk about the smaller details of our experiences, on a forum such as this. No matter how helpful people try to be, it is only those who have gone through the same experiences as us that can truly understand how we feel.

    I am delighted you are feeling so positive at the moment. You have just gone through one of the scariest times in your life (that’s a wild guess!) and you are already pushing towards a positive future. Well done you!

    I was a little excited when I read that you are getting the prickly feeling in your thigh too. (I’m sorry that my excitement is at your expense!) I’m still getting that sensation and it’s bothering me at the moment. I was going to make an appointment with my MLD therapist this week just to get some idea as to what might be causing it. You mentioned some muscle as being a possible cause of your discomfort- can you tell me more about this? I have been minding my 2 year old nephew for the last two weeks and I’ve had him sitting on my lap quite alot. I’m thinking that maybe I have irritated some of the nerves in my thigh as a result. I’m sure I shouldn’t have him sitting on my treated thigh anyway. The compression garments help camouflage the prickles so I prefer to always wear one now. Although I’m sure the prickles are nothing serious I still would like to know exactly what causes them so I can stop doing whatever it is that makes them worse. I know this sounds negative, but I really really hate them. I suppose they are the only thing now that remind me of my experience. Of course the scars are there but I don’t mind them at all.

    I can’t believe that I am almost a year on now from the beginning of my melanoma story. What a year it’s been! Thank God I can put it behind me now, as much as I’m allowed to. Things are good. Please keep me posted on how you are getting on. I had eight nodes removed too and all were negative.

    Best wishes for a speedy recovery.

    Anne

    P.S. I just noticed Linny’s post, advising you to get two compression garments. That’s a good idea. However, I would suggest getting more. I started with one and now have six – almost one for each day of the week! I let them build up and handwash them all on the one day. I was getting sick of having to handwash them every second day. Anything to makes life easier … :D And, yes Catherine – patience helps alot too :)

    #62093
    Linny
    Participant

    Anne, you are right! If you wear those things on a frequent basis then you do need about a week’s worth of them. I like your idea on how to launder them. :mrgreen:

    At first I wore mine only when traveling by airline and I regretted not having two: one for the trip to the destination and a second one for the trip home. Recently I’ve developed some swelling at my elbow so I, too, am wearing mine on a more regular basis and have 6 of them. I’ve also started to see a therapist on a more regular basis, so I guess my holiday is over. I’m so grateful for sites like this, which lead me to other web sites to get familiar with the symptoms so I could address them right away.

    #62094
    goldfidler
    Participant

    Hi Everyone…

    As today is my one-month anniversary of my LND, I thought I would share an update on my status to the group. I only hope my updates can provide a little help to others who are new to this forum.

    42-year old male

    Stage IIIc

    – I am now drain-free, staple-free, and stitch-free from the groin dissection. For Halloween, I could be a very realistic Frankenstein, if only his scar was on his upper thigh. I cannot express in words the freedom that I felt when the last drain was removed. While I encourage everyone to keep the drains as long as they are expelling 25-30 ML per day, it was an amazing feeling to have them all out. I almost felt normal again.

    – My mobility is increasing every day. I am stretching, low-impact exercising, and working with a physical therapist. For those who know my situation, I also had a TMA partial amputation on my right foot to remove an intradermal melanoma tumor. Therefore, my recovery is a combined foot/leg issue. Regardless, I am making progress. I actually hit two buckets of golf balls with my daughter this past weekend at the driving range. This was a first in more than three years. Celebrate the little victories too!

    – There is still pain in my thigh from time to time. Also there is some numbness in some spots on my thigh. Some days more than others. It is mostly the tingly/prickly pain, not deep muscle pain. I still rely on ibruprofen and the occasion Percocet to cope. The only real solution I have found is laying down with my leg elevated. I am getting more educated on LMD massage therapy though.

    – My right leg is swollen about 10% more than my left leg, on average. When I am more active or sit at my desk for a long period of time, it can swell to a much larger size. I typically wear a 15/20 compression sleeve every day, all day. I am getting a new 25/30 next week at the PT so that might help to shrink and maintain the swelling. Future update on that.

    Overall, I feel positive that I am making progress and not all days are good days. Yes, there is pain. Yes, it is frustrating sometimes. I swallow the pain to kick a soccer ball or hit a golf ball with my daughter for an hour, knowing fully that I will need to lay down for two hours as a result. I cannot work like I am used to, and sometimes I wonder why I ever wanted to work that much anyway. My scars still look ugly to me in the mirror, even when I try not to look at them. My mind still goes into the dark zone on occasion, even though I know there is no benefit in it. I still wonder sometimes what the future holds. But I am moving forward. I am finding the joy in life rather than dwelling on the alternative. I am moving on. This chapter of my life will not be the last chapter.

    And to all of you, I cannot thank you enough. For those who have seen my previous posts from only 2-3 months ago, you know what I am talking about. I visited this forum confused, uninformed, and scared. This forum has helped me in so many ways. You helped me to develop a path forward, when my head was spinning out of control. You helped me to educate myself and find the information I needed. Most of all, you helped me by being there, so I could see that I was not alone in all of this. I have the most sincere and humble appreciation for you and this group.

    Have a great weekend!

    Matt

    #62095
    Annieo
    Participant

    Hi Matt,

    I was just reading your message, dated October 2012. I am sorry I didn’t respond sooner. On reading your message again I was impressed with how on top of things you seemed back then. I remember being able to relate so well to how you felt initially, post surgery. There’s no denying that it is rough being thrown, without warning, into the world of melanoma! For me, I feel I cope much better now with everything that involves melanoma. This time last year I was petrified I think. It was an awful place to be, but justifiably so! I takes time to feel calm and confident again I think. Thankfully, we learn as we go. The support from people here helps greatly :) As you said, it’s the small things that make life so good :)

    I hope you are still doing well. It is so good to know that there are people out there who know how we feel :) Best wishes,

    Anne

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