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Deflated…Defeated…Stage 3a to IV?
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Deflated…Defeated…Stage 3a to IV?

› Forums › General Melanoma Community › Deflated…Defeated…Stage 3a to IV?

  • Post
    • February 24, 2019 at 12:58 am
    nicolec
    Participant

      Stage 3a. Monthly Opdivo since July.

      I had my 6 month PET/CT scan last week as well as ultrasound. The scan results posted- and this is what it says (I meet with my oncologist next week):

      1.Two new foci of hypermetabolic activity along the upper aspect of the

      posterior left hilum, with 1 area extending into the superior segment left
      lower lobe. It is uncertain if these are 2 enlarged abnormal lymph nodes or if
      this is 1 new pulmonary nodule in the superior segment of the left lower lobe
      with a left hilar lymph node. Findings are suspicious for metastatic disease.

      2. Focus of radiotracer uptake within the right hemipelvis corresponding to the
      region of the right ovary, and felt to be further lateral than the expected
      course of the right ureter, although the right ureter is not well seen in this
      region. Consider follow-up pelvic ultrasound. Attention on follow-up is
      recommended.

      I CAN'T TAKE this. It just seems like too much! If I'm reading this correctly- it seems like it's likely that it has spread to my lungs. So- Stage IV.

      What questions should I ask? 

       

      To top this off- earlier this year, my 15 year old daughter was placed inpatient for mental health issues- depression and anxiety- How do I not let this add to her problems?

      Okay- sorry for the vent/rant. Feeling OVERWHELMED! 

    Viewing 3 reply threads
    • Replies
        • February 24, 2019 at 2:16 am
        Johnjk04
        Participant

          Sorry that all of this is hitting you now Nicole. Put your focus on your daughter, make sure she gets all of the proper treatments. Afterward find the best psychologist for her. My 18 year old son Kyle couldn't handle what I was going through, we miss him so much. Now you hitting stage IV, I know it's a tough time but there are plenty of marvelous treatments out there. Put yourself in a melanoma center of excellence and ask plenty of questions on this forum. There are many stage IV patients on this forum who have been NED for quite a while. I am hoping for the absolute best for your daughter and you.

            • February 26, 2019 at 10:44 pm
            casagrayson
            Participant

              John, my heart breaks for you and Kyle.  I'm so very sorry.

              • February 27, 2019 at 12:53 am
              Bubbles
              Participant

                Amen.  Sending love to you and yours, John.  celeste

                • February 28, 2019 at 4:18 am
                Johnjk04
                Participant

                  Thanks to you my fellow rattie. Yes life does suck great big, green, fuzzy balls at times but we motivate ourselves into powerful people always looking to help out where need be. We have a saying about our grief of Kyle – "it doesn't get easier but it does get softer". Thank you again Les, much love to you as well, eeeecckkk eeecckkk!!!

                  • February 28, 2019 at 4:11 am
                  Johnjk04
                  Participant

                    Thank you Susan. Kyle's departure made the cancer fight pretty easy. We have done a lot of suicide prevention work, leading the Hartford AFSP walk, UCONN suicide prevention committee and went to D.C. to advocate for many mental health bills.Life can be tough but there are plenty of marvelous days mixed in.

                  • February 24, 2019 at 5:36 pm
                  MichelleRHG
                  Participant
                    I also progressed to Stage 4 with a hilar node. It was removed 11 months ago. So far no recurrence. Have scans again in 10 days. I continue on Opdivo. Here’s the thing. It was a “difficult but doable” surgery. A young, bold thoracic surgeon at MDAnderson removed it. So, it CAN be done!! Best wishes to you.
                      • February 25, 2019 at 12:21 am
                      napavalleymogie
                      Participant

                        Hi Nicole, 

                        You have to stop looking at life from a 1 year to a 30 year to live perspective.  What will happen if you get exactly what you want?  Focus on that!  The universe wants you to have every little thing your heart desires. I was stage 3 now stage 4.  I have a daughter 22 & just turned 50.  I can't imagine leaving her behind so why do it. Knock it off!!!  Focus on being present, not living in the future.   

                        • February 25, 2019 at 3:57 am
                        nicolec
                        Participant

                          So- they did surgery and then had you stay on Opdivo? I guess I'm feeling like Opdivo isn't working for me if it spread- but I don't fully understand how everything works. Guess I'll find out more tomorrow. Good luck on your future scans!

                          • February 26, 2019 at 5:51 pm
                          MichelleRHG
                          Participant
                            Yes. Apparently since after it was removed I was NED so that was the best/only option. No trials for my particular situation. If something else pops up there will be an arsenal of options, I was told. Best of luck to you.
                          • February 27, 2019 at 3:42 am
                          Ridingaroundwith27Jennifers
                          Participant

                            Hi Nicole,

                            The mental part of this diagnosis has been the hardest part for me.  Deflated – OK but defeated – never.  You've got this and you can and will balance doing your best for your daughter and dealing with where you are with your cancer journey.  A good friend asked me just yesterday how I'm dealing with working, family issues (there are quite a few), parenting, caring for an elderly parent and my melanoma.  The answer is that I just do it.  I don't have any other choice so I do it.  You are overwhelmed now but you are going to do this and rock the heck out of it.  You will do it with style and grace and people will call you amazing.

                            Vent/rant here anytime.  We are your people.  We get it.  My path has been different so I don't have any advice for you on what questions to ask.  My girls are 7 and 12 so I don't have any parenting wisdom for you. I try to prioritize and then deal with things in that order.  Of course it changes daily and sometimes my plan goes completely out the window.

                            Try not to worry too much until you meet with your oncologist.  

                            Good wishes to you,

                            Jennifer

                            • March 3, 2019 at 12:02 am
                            NancyGM
                            Participant
                              Nicole, 2007-2008, I was treating an inoperable hilar lymph node met. My, then 15 year old daughter was in the same situation . At least, my concern for her took me out of my head about my prognosis. Eleven years later, she is a young adult who has been with the same therapist for 10 years, has her ADHD, depression and anxiety treated and is functioning well…and I’m still here…at the time, I never would have guessed that outcome. Hold on to hope.
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