Home Forums Newly Diagnosed Stage III/IV thought i knew

  • This topic is empty.
Viewing 6 posts - 1 through 6 (of 6 total)
  • Author
    Posts
  • #21420
    calliegirl
    Participant

    I thought I knew what i was going to do but know after reading these forums and others, I am confused.

    first let me say: amelanotic,

    clarks level at least IV

    breslow at least 2.9mm

    mitosis 17

    positive ulceration

    wide excision is clear but SNB is positive. I thought I was clear , next step total dissection but now….there in lies my confusion. So many conflicting ideas on this. Tomorrow I have CT scan and MRI

    I guess I don’t really know if I have a question or Im just confused, lol

    #61656
    Catherine Poole
    Keymaster

    I’m sure this is a time of anxiety for you and therefore confusion is common and normal. Next step is the partial or full node dissection. Then probably watch and wait. I would ask them to test for Braf, and Nras mutations with your biopsy samples. You can then be prepared if you need to do any time of adjuvant therapy. Do you have a support person to help you? I hope so. You might want to read our newly diagnosed section too. Let us know how you are doing.

    #61657
    Shirley Z
    Participant

    So normal to feel this way. Its such a scary confusing time. Where is your melanoma located?

    I had a deep groin LND 7 yrs ago. Very deep primary. Almost 12mm, ulceration, vascular invasion, also a matted palpable cluster in my groin. Very poor prognosis. As you can see I’m still hanging around 7 yrs later.

    Hang in there! Just take it one day at a time. We’re here for you.

    Shirley Z

    #61658
    calliegirl
    Participant

    Thank you for your kind words. Today the sutures from excision and SNB were removed, then CT and brain MRI. I will know results Monday, then treatment options of TLD if clear with ipi. More waiting! Just wish the doctors office didn’t loose my FMLA paperwork, I think it’s still important that I eat!

    Thank you all for your support. I am very optimistic and I have a cruise I have to be on this October, I can’t let my disabled son down!

    #61659
    Shirley Z
    Participant

    Hi Callie,

    It sounds like you have a lot to look forward to with

    the upcoming cruise. I’m sure its not easy dealing with

    your own health issues when you have a child with special needs.

    I have 2 children with health issues and the worries never end.

    Praying for good results on Monday. Hope they

    get the paperwork figured out soon. You certainly don’t

    need that headache on top of everything else.

    Take care. Keep us posted.

    Shirley Z

    #61660
    Annieo
    Participant

    Hi Calliegirl,

    I hope you are doing ok. My story is similar to yours only I’m slightly ahead of you. I got my melanoma diagnosis last November, 2012.

    .nodular melanoma

    . Clarks level IV

    . ulcerated

    . Breslow thickness 3mm

    . mitosis 2 (I think)

    . positive sentinel node

    It is a very anxious time being faced with a melanoma diagnosis. Mentally, everything about melanoma will become more familiar to you and the idea of living with it will become a little more manageable and not as frightening.

    I had my groin dissection (superficial nodes) on January the 31st last. All nodes were negative, thankfully.

    I have been ‘watching and waiting’ since. It is really difficult to let go of the fear and put your trust in a ‘watch and wait’ plan. At the time, it sounded like a crazy and risky plan – having just gone through the nightmare of fear, panic and surgery. That was the only plan being offered to me. I am living in Ireland. I did a bit of research and discovered that yes, this was a suitable plan for me.

    Since I started watching and waiting I have had two scares. One was a very hard area on my scar which was ultra-sounded for a possible recurrence, and the other was a lump under my armpit that I found three weeks ago. Both discoveries were frightening at the time, however, both turned out to be nothing to worry about!! I am finally beginning to trust that I can get on with my life and put the worry away as best I can. Things often work out better than we imagine. I’ve decided to be vigilant and pro-active at all times but not to panic needlessly. I don’t think anyone can predict how the future will be for any of us, not even the specialists themselves. We might be one of the lucky ones and escape recurrence for a very long time :)

    Like you, I don’t know is this reply answering your question or even if it is of any help. The bottom line is, things will get easier in time. I think it is a great help to post on forums such as this. It is only people who are going through it themselves that can truly understand. I check in to this forum every night. I don’t want to forget melanoma. I want to remember that I should appreciate and live my life to the full :)

    Good luck with the scans. It’s not nice to have them hanging over you, but they have to be done! Please God all will be fine. Best wishes,

    Anne

Viewing 6 posts - 1 through 6 (of 6 total)
  • The forum ‘Newly Diagnosed Stage III/IV’ is closed to new topics and replies.