Home Forums Melanoma: Stage III Recurrence after a IIIb diagnosis 2013; what next?

  • This topic is empty.
Viewing 14 posts - 1 through 14 (of 14 total)
  • Author
    Posts
  • #21769
    Annieo
    Participant

    Hi there,

    I had a diagnosis of Stage IIIb in February 2013 after a left-side groin dissection. I was originally diagnosed with nodular melanoma, Breslow 3mm, Clark’s level IV, mitosis 2, focal ulceration, left thigh in November 2012. The sentinel node was the only positive node found.

    Recently, almost one year later, I discovered a small lump in my left thigh which proved to be melanoma. I am due to have a follow-up consultation with my dermatologist on February 7th, when any questions I have will be answered and results given.

    To date, I have only met with my surgeon since my recent surgery, when the mass was removed. I didn’t ask him questions at this appointment as I prefer to wait and speak to my dermatologist. She is wonderful, honest and interested in making me feel listened to.

    That said, I did ask my surgeon what the mass was and he told me that it was a ‘metastatic deposit’, 6mm. He is not too interested in engaging in conversation and hesitated to put a label on it for me. The melanoma was wrapped around a nerve in my thigh. ( he told me that this was very interesting – he had never seen anything like it before) He also removed the nerve during the surgery. It had been causing me a lot of discomfort in the latter months. Also, my dermatologist had requested that I be tested for BRAF during this surgery. She said it would be good to have the results on record if needed in due course. However, having asked the surgeon about the BRAF results, it seems that the test was never done at the time. I am very disappointed that it wasn’t as I was ready to receive the information and to start processing the result in my head.

    I have since requested all my medical records from the hospital and am still waiting to receive them.

    The reason I am posting here is because I would love some ideas on what I should be asking my dermatologist on Friday week when I meet her. I have put some thought into it but I am hoping that some of you will have suggestions for me on what questions I should ask, having had similar experiences. I’m hoping to learn about my present staging, possible treatment down the line, future scans, BRAF, what a ‘metastatic deposit’ means for me, how it formed, etc. etc. I am not looking for statistics.

    I feel very ‘stuck’ at the moment, having spent a full year trying to move on from my original diagnosis. This recent recurrence has erased all of my hard work and I am finding it hard to trust melanoma :( I’m guessing that once I have my consultation in two weeks time and things are explained to me that I will be able to start afresh and be able to start looking forward somehow …

    By the way, can anyone explain to me what focal ulceration means? I just realised I have no idea!! As mentioned earlier, my original mole had focal ulceration.

    Thanks for reading :)

    Anne

    #63423
    Catherine Poole
    Keymaster

    I would not worry about your original mole at this juncture. I would definitely get the BRAF testing done on this though to see what that status is. You may just have this met and nothing else or you may have to deal with others. I know Shirley had this and then didn’t see any other mets. I think watch and wait if you next action (and maybe find a new surgeon is who more empathetic?)

    #63424
    Annieo
    Participant

    Thanks Catherine for your advice.

    To be honest, I am happy with my surgeon. He’s fantastic at what he does and I am lucky to have him I suppose. Experience has helped me learn to deal with his bedside manner. I understand now that my care plans are overseen by a team of experts that I (at last) have confidence in.

    I met my dermatologist yesterday and got the good news that the BRAF testing was, in fact, done during my last surgery. I hadn’t been sure about this. Better news again was that I am positive for it :D … The meeting went well and she answered all my questions in a lovely, honest, gentle and professional manner. My recurrence was multi-focal and was in the tissue. I happily asked her had my stage changed as a result of my recent recurrence and was shocked when she answered ‘Stage IV’. I was prepared for everything, but not this announcement! She lost me after this but my sister, who was with me at the meeting (and who was just as shocked as I was), continued to ask questions about treatment plans etc, answers to which I have still not processed myself.

    I spent the day yesterday in very good form but I was in shock. I have been spending lovely time with family since. I experienced a lot of anxiety last year, around my groin dissection. I feel I am in a much better place, emotionally, this time around. It is early days for me yet to know how I feel or to begin to question anything about my new diagnosis. I didn’t think to ask what exactly was it that has made me advance to stage IV. For now, I am happy that my dermatologist ordered a blood test for ldh levels yesterday. I’m sure she will phone me next week with those results…

    I really didn’t expect to be moving on to the Stage IV thread on this forum quite so soon. That said, I know I will adapt and accept the news in time.

    I am so glad that I will have the information and support that this forum provides. I have no research done on stage IV … Much thanks to you Catherine, and all here online. I have to mention also the amazing support I am getting from family and close friends at this time. I try to help support them too by being realistic, accepting and finding things to do every day that make me happy. I have learned to be a stress free, happy-go-lucky person and I try not to sweat the small stuff. I will try my best to maintain this outlook in times ahead. It makes me remember life is good and that life is for living. I think positivity rubs off on others and makes things much more bearable for all involved. (sorry about that little rant!)

    Thanks again Catherine

    Enjoy the rest of the weekend. Anne

    P.S. I apologise for my very negative, initial post above! I’m sure we are all allowed to have days where things get on top of us a bit ;)

    #63425
    Catherine Poole
    Keymaster

    Hi Anne,

    Stage IV allows for many treatment options, whereas, stage III doesn’t. I hope this changes one day soon! In the meantime, it sounds like your support system is wonderful and you have confidence in your medical team. We are here to provide any extra support you might need. And you are absolutely allowed to have up and down days! Enjoy the good moments though!

    #63426
    Anonymous
    Guest

    Anne:

    Sorry to hear they consider you Stage IV now. It is quite a shock to hear those words and quite normal to feel in a numb state for a while. Don’t worry about dumping your guts here, highly recommended actually.

    Catherine is right. The silver lining here is that you now have a whole lot more options available for both already approved treatments and trials, especially trials if you are “treatment naive” (assuming you did not take interferon, and even if you did some don’t count it as long as you’re a few months removed from it). I also imagine your team will want a base line set of scans for future comparisons. Knowledge is the power you need to stay ahead of this crap.

    Catherine’s also right in that it’s fustrating that treatments approved for Stage IV are not available for stage III people. Why should you have to wait for a stage IV diagnosis? I thought the whole idea was to avoid that. Sorry, one of my pet rants.

    But it sounds like you have a good team, many choices, and lots of bullets for any gun fight with this disease if you need them (that was just not true a few short years ago).

    God bless

    Jeff

    #63427
    Linny
    Participant

    Sorry to hear of this turn of events, Anne. If there is an “up” side to all this it’s that you now have several treatment options available to you. And, the fact that you’re BRAF positive is a HUGE plus. Another “up” side is that with these new treatment options more and more Stage IV people are able to go on with their lives. I believe that once the PD-1 drug gets approval things will start moving by leaps and bounds.

    It’s definitely not sunshine and lollipops but there are long-term Stage IV warriors out there.

    jeffb wrote:

    Catherine’s also right in that it’s fustrating that treatments approved for Stage IV are not available for stage III people. Why should you have to wait for a stage IV diagnosis? I thought the whole idea was to avoid that. Sorry, one of my pet rants.


    This is one of my pet rants as well. It’s great that the focus is on those people with Stage IV disease, but how about starting to place a little more emphasis on doing something to make sure we don’t get there in the first place?

    #63428
    Annieo
    Participant

    Thanks all for your kind words everyone :)

    I typed up a reply the other night and I just realised it must have got lost as it never appeared on the forum! I won’t go through gathering all those thoughts and typing them up again tonight as I’m just too tired but I wanted to say thanks anyway. I am grateful, as always, for your support. I will keep ye updated again soon. There has been news for me over the last few days so I am resting up after the recent stress and ignoring melanoma for a little while!

    Hope all is well with you all.

    Anne xx

    #63429
    msue5
    Participant

    Anne

    I went from 3b to Stage 4 in Oct 2012. When my Oncologist said he was surprised at my low key reaction I told him it’s almost a relief. Here is the day I had been agonizing over for 3 yrs yet the world didn’t come to a stop and I can have a plan now. Also I now had access to drugs. It seems like a strange reaction but I am sure I’m not the only one to feel that way. Stage 3 limbo land sucks!

    Mary Sue

    #63430
    Linny
    Participant

    Mary Sue,

    I remember when you progressed. You really were pretty calm about it even here.

    It does seem crazy that in order to get decent treatment options you have to progress to Stage IV. Stage III just has Interferon or Observation-only and results-wise they are comparable to each other. OK, interferon has a slight edge but not enough to warrant dealing with the side effects over an extended period of time.

    I think that part of the problem is that a substantial number of people do well at Stage III so it’s difficult to determine the effectiveness of a particular trial drug.

    Isn’t there a trial going on where they are testing Zelboraf of Stage III patients?

    Linda

    #63431
    msue5
    Participant

    I think there are more studies for Stage3 now. I wish that they had been available when I needed them. My pos groin node had breen totally replaced with Melanoma(extra nodal extension?). They told me that it was highly likely I would have a recurrence and it was a matter of when not if I would. I also had very limited access to trials due to my Lupus and I thought I was Braf neg but I was one of the lucky ones who turned up with a false neg. the braf test was redone on a thoracic met so I don’t know if I would still turn neg on a blood sample? Mainly Through my post I wanted to acknowledge how difficult Stage 3 can be. I felt life was on hold for 3 yrs. I still live life in 3 month increments from PET to PET but am better at making future plans than I was. Like my Oncologist always says- prepare for the worst but hope for the best!

    Mary Sue

    #63432
    Linny
    Participant

    I remember your BRAF dilemma. Good thing you had it checked again and that it ended up being positive. I guess they’re still working out some of the kinks with its testing.

    I’m living in 6 month increments. Just had scans done the end of January, which were clear, so now I’m off the hook until July.

    #63433
    Annieo
    Participant

    Thanks for the reply Linny,

    I like how you say you are ‘off the hook’ until July :) It’s so true. That’s all I’m hoping for at the moment. Just to be able to have some peace of mind for a while would be a blessing! Glad you can relax for another while. Enjoy :)

    Chat soon

    Anne x

    #63434
    goldfidler
    Participant

    Just adding this message for support to Anne and all of the others on this forum. We are here to smile with you on good days and to support you on the bad ones. If you cannot share your thoughts here, where can you share them? We love you Anne and are here for you. Always.

    I have found true support and guidance from this forum and its members. I am so grateful to everyone. In the beginning, I found support and understanding on this forum from people like me, who were going through the same things. I had trouble finding this with family and friends as I don’t think you can truly appreciate this situation until you are thrust into it. Then I found a non-judgmental group of friends on this forum, who listened to me, whether I was enjoying a good day or venting about a bad time. And now, I find others on this forum who are taking the same journey but are also sharing their experiences and wisdom with others. I see this sharing and support for others as our price of admission. It is our job now to share our stories and to help the next generation of joiners to our group. While we all hope that nobody new joins our group, it is an unfortunate fact that there will be more.

    For those of you who don’t know me, I am now six months into this melanoma adventure. I am a Stage IIIc. The site of my melanoma tumor was on the bottom of my foot. In order to remove it with clean margins, I had to have the front half of my right foot amputated (trans-metatarsal amputation). Then the obligatory SNB and then a lymphadenectomy on my right thigh.

    As of 3 months ago, I am NED. Hello everyone. I send you my best wishes and most positive thoughts as we continue our journey with the Evil M.

    Big smiles to everyone!

    Matt

    #63435
    charissa1969
    Participant

    Hi, Anne.

    Matt emailed me and told me about your recurrence, and I wanted you to know how sorry I am to hear it. I don’t understand why you were moved to Stage IV, but I imagine it is very overwhelming. How are you doing now? Please know that you are in my thoughts. You were there for me when I needed encouragement and hope; please let me know if I can do anything for you.

    Charissa

Viewing 14 posts - 1 through 14 (of 14 total)
  • The forum ‘Melanoma: Stage III’ is closed to new topics and replies.