The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Newly diagnosed in situ-but need a CT scan

Forums General Melanoma Community Newly diagnosed in situ-but need a CT scan

  • Post
    asever19
    Participant

      Hi everyone, I was recently diagnosed with a melanoma in situ and a dysplastic nevus on my back.  Since then I've been lurking a little bit and this forum seems like such an encouraging place and has really helped me learn a little bit more about what this means.  I was wondering if anyone had any thoughts or experiences with the place I'm finding myself right now.

      I was afraid when I got my diagnosis that there were melanomas that might have been missed, so I got a chest x-ray pretty much for my own peace of mind, but was slowly moving out of that initial panic stage.  But today, my doctor called me and said that they see something on the xray.  They think it's probably just overlap, but they are ordering a CT scan and I'm terrified all over again.  I know that the odds of it being something serious are pretty low, but I'm still freaking out.  

      I had everything else checked out like they said, eyes, mouth, etc. and everything came back fine.  My excision is scheduled and I thought I could start to think about what managing this looks like long term, but now I don't know what to do.  I'm picking up the order and going for the scan tomorrow.  Most of my family is treating the melanoma in situ diagnosis as not a huge deal, which I get that it sort of isn't, but it makes it hard to talk to them about how I'm feeling.  I haven't told my parents about this new thing with the xray, only my best friend, and that's part of what pushed me to post here.  It seems like a really understanding place.  Any thoughts would be greatly appreciated.  

    Viewing 3 reply threads
    • Replies
        jennunicorn
        Participant

          You can rest easy by remembering (if you didn't already know) that in situ mels have no access to blood or lymph vessels, therefore they have no way of spreading, which is why once it gets removed that's it for that guy. Also, something that might help ease your mind about whatever was seen on xray of your chest, is that is the one place in all bodies that weird stuff will show up. A lot of us on here are used to mysterious lung spots showing up. My oncologist once told me (after some spots showed up in my lungs) that you could scan 100 healthy people and at least half of them would have some small benign spots in their lungs. And, mine disappeared after a few months. Have one bad cold, and boom, there's a spot on a lung.. things like that. 

          All the best,

          messedmelanocytes
          Participant

            I can relate well to your position because I was diagnosed the same as you were in January but then the dyspastic nevi turned out to be a 2nd mm. I felt a fear that paralized my thinking for about two weeks, but it has passed now. I didn't go for any xrays, but the dermatologist has recommended biopsy of another 3 sites.

            I came out of the initial extreme anxiety when I took to heart the fact that worry never cured anything, in fact it causes stress which doesn't inhibit cancer, so its really the wrong thing to be doing. I find  it is helpful to just focus on next steps, for you that's the xray, for me its the next round of biopsies, but try not to think past that because whatever happens next can't be addressed until the results are in, and then it will be under the advice of knowledgable experts who already know far more than i can read on line. Just be sure to be in the hands of an expert your trust and the best one for your situation that you can find.  

            Everyone's out look and philosophy is going to differ, what makes sense to one of us won't make sense to all of us. For me, I feel that life and good health is not a right, it is a gift and the gift you get is the luck of the draw. Nobody can take the future for granted, disease especially cancer comes out of left field and blind sides us, the 53  years I've had have been great, I think about all that Im proud of and all that I've enjoyed. I don't know if I'm genetically predispoed to mm and that it will be what takes me out and I don't know when. Mine was caught early, it might mean I stand in a good position in this battle or I could get the worse possible news in 2 or 3 years that it has leaped ahead without warning. But the only thing I can do for that is to learn as much as I can about mm, follow the treatment options others have taken, gain from thier experience and get informed and in the meantime enjoy every day I get that is mine to enjoy, count my blessings, live, love, laugh and forgive becuase my time here might be shorter than I had anticiapted, so, I sure won't be wasting time worrying when I need to be enjoying myself and others.

            One of the biggest blessings to count is that mm is no longer a death sentence, advances are happening before our very eyes that are making people NED, there has been magnificent progress in the past 20 years, imagine what another 10 or 20 will bring! I am incredibly thankful for this and all the time, money and effort that so many invest to march on towards a cure.

              MmP15
              Participant
                I think its best to grab as much prognostic information as possible upfront, including gene tests, since it needs to be cured. May try DecisionDx or MelaGenix along with sentinel node biopsy.
                dmalone
                Participant

                  MmP15 thanks for mentioning these tests, I haven't heard of them unitl now. I'm a new IA and after a wide excision, my surgeon and oncologist have said I'm cured, nothing else needed including node bx. It's good to know of other options for more information. Thank you!

                  ed williams
                  Participant

                    Hi dmalone, I would take the advice given to you by MmP15 with a grain of salt. The person is not giving you standard of care advice on this topic and they have no history or profile on the forum. The other post this person has made, was to go back to 2015 and post similiar advice, I have yet to see some one go back two years when they are new and give advice. Here is the other post https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/anyone-have-experience-new#comment-105151  When it comes to advice for in situ and early stage folks any advice from Janner or Jenn or Celeste is gold. MmP15 may just not be informed but every once and awhile some one comes on to the forum trying to market products. Best Wishes!!!Ed

                    MmP15
                    Participant
                      No marketing, also no standard care yet, but these genetic tests are non-invasive, sole option to look deeper into biology especially metastatic potential
                      ed williams
                      Participant

                        MmP15, I think you are full of BS and here is another example of your agenda on the forum!!! https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/oncologist-says-i-am-stage  

                      TexMelanomex
                      Participant

                        Welcome to the board from another "newbie". I have found this forum to be invaluable for information and support! My situation is different, but I think our reactions are very similar. You are already getting some really good advice from the previous two posts. If I can offer anything to the discussion it is perhaps reiterating that anxiety and concern are normal but don't let them consume you. Do you best to live life each day and each moment.

                        I did what you did when I was first diagnosed, I told no one (after all, why worry them if it all turns out to be easily treated) but I'm not sure this was the best approach. I found that once I did tell them (after all, its kind of hard to hide surgery and extended trips out of town) it was helpful for me also. Sure, they were concerned but they were also a HUGE support system that wanted to help if they could. This place is great and people in here understand this better than anyone. Many people here are as knowledgeable as the doctors who treat it because they have lived it and have done extensive research, nonetheless follow your doctor's advice and if you are in doubt get another opinion, information is priceless.

                        I think this is a unique process in some respects for everyone, but also shares many similiarities since we are all human. I completely agree with the posts above. Even if this turns out to be something more than you thought, this is a very different landscape than it was even 5 years ago. There are options, there are treatments! Hoping for the very best for you, and please, try to live in the moment even when anxiety rears it ugly head. Find things you like doing or that you havent done in awhile to give your brain a break!

                        B

                        BillMFl
                        Participant

                          If you are gonna have a mm then in-situ is the best by far. Cure rate approaches 100% . You will scare yourself reading here about those less fortunate than you Count  your blessings and spend your free time learning how to spot and recognize early suspicious lesions you might have in the future. Study and know the moles/lesions you have now so you will recognize future changes early on. Any of us who have had an in-situ (two for me so far) are very lucky and should be better prepared to spot new ones. That spot on the scan is highly unlikely to be related to your in-situ. Impossible? No. Likely? No.

                      Viewing 3 reply threads
                      • You must be logged in to reply to this topic.
                      About the MRF Patient Forum

                      The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                      The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                      Popular Topics