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Hello – I’m New To The Forum!

Forums General Melanoma Community Hello – I’m New To The Forum!

  • Post
    jagstter
    Participant

      After way too long, I've finally registered & am making my 1st post. Yay! I feel like I am so much better-informed, due to many of you on this forum … thank you, all. My hope is to be able to beneficially contribute & help others, who may be struggling in this terrible battle.

      I tried to put all the pertinent details in my Bio & Profile … I'm a classic case of learning via the "School of Hard Knocks," LOL. If I can help someone else avoid making the same mistakes, I'll truly be glad ๐Ÿ˜‰

      I travel to MDA for treatment & just learned I likely have numerous metastases from my primary (July 2015 – Right Posterior Trunk, Clark's Level IV, Breslow Depth 4.0mm, Ulcerated, Lymphatic & Circulatory Invasion, w/ a Mitotic Rate of 33!) to both lungs. Radiologist cites, "Numerous bilateral pulmonary nodules in both lungs, up to 8mm" & provides 5 for example: 6mm, 7mm (2) & 8mm (2), all w/ ground glass attenuation. I've had no previous nodules on prior PET/CT or Full-Body CT scans, going back about 2 years, now. The doctor suggested exposure to hazardous materials or pneumonia (nope!) & agrees there is high probabilty it is, indeed, Metastatic Malignant Melanoma. I am scheduled to go back in mid-December for a 2nd Full-Body CT scan for confirmation. Hoping it is viral but I have no symptoms to suggest. Also, I'm 12 days in on Bactrim regimen for Prostatitis, which would have knocked out any bacterial infection potential. I hate the wait, the prospect of progression, biopsy, drugs … it is very overwhelming ๐Ÿ™

      Hoping & praying for patience, while I wait. Thanks, for reading & allowing me to be a part of this great group!

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    • Replies
        jennunicorn
        Participant

          Why do you have to wait so long for your next scan? Typically would re-scan 3 months from the last one if something suspicious is showing. I would ask the doc about that, I wouldn't want to wait that long.

            jagstter
            Participant

              Good question … it is one of the considerations growing in my mind, now having had several days to digest & research. 2-3 months appears to be more appropriate, along with the possibility of a PET/CT, rather than just a CT. FDG uptake, while apparently not 100% can still provide further diagnostic confirmation warranting a biopsy & hopefully, rapid treatment. The other relevant factor of note is the generally sigificant pace of TDT (tumor doubling time) for melanoma lung metastases, as compared to other carcinomas. I've learned to be very discreet in only assessing the past year or so's medical data & that, only from NIH, Mayo, MDA, JAMA, ONCLive, etc. Time consuming but essential!

              cancersnewnormal
              Participant

                While I personally would be in full on panic mode and not want to wait 4 months for another CT… I can almost see where your oncologist might not have those same alarms blaring. Oddly enough, many folks here at the forum have had incidental findings on CT's. Benign lung nodules can be caused by a multitude of things, including a fungus, which your antibiotic wouldn't help. Additionally, different antibiotics are better with certain types of bacteria than others… which is why depending on what is causing an infection and where… your doc would choose the best antibiotic for countering that particular bug. All of that aside, it is still possible that your melanoma from a couple of years back, has metastisized. From a doc's potential perspective, your nodules are still quite small. Not that we wouldn't all much prefer to hear/read "I see nothing."! Buuuuut… with the largest being 8mm at this point, in 4 months, it could be reasonably assumed that, even if melanoma, they would be roughly 1.5 – 2 cm in size. That kind of growth would be pretty clear, even on a basic CT. And yes, that would suck. However… even IF that is the case… those lesions would still be considered small, and treatment options would remain the same. ALLLLL of that aside, I'd still be after my doc for a 3 month follow up scan at the latest… even if for no other reason than to shorten the duration of my panic about the unknown. It can't hurt to ask… right? : )

                jagstter
                Participant

                  Thanks, Niki … you're right about panic & anxiety; it never seems to get easier! The Bactrim (21 days x2, per day) was actually for prostatitis & I was 10-11 days in @ the time of scan. Oncologist agreed that would have cleared up most but not all other possible infection suspects. Fungus is a remote possibility but from what I've researched, there would be some specific symptoms, which I haven't experienced.

                  I keep thinking about the dreaded "Standard Of Care" as the ruler by which we're often measured / treated. IMHO, for Melanoma, it falls short. I plan to draft an emai, this weekend, requesting the rescan date be moved up a month. Hopefully, I'll be pleasantly surprised. Still, trying to prepare myself mentally for whatever may come.

                  cancersnewnormal
                  Participant

                    Ugh… just the words "standard of care" make my eyes roll. I'm guessing that many of the executives behind how these standards are set, have never experienced being "the odd man out". Standard of care almost got me killed… twice. Needless to say, I've never allowed for strike 3, because we all know that means OUT. Call your oncologist… call your insurance company… if you're in an HMO, call your physician's health group. Sometimes you may even have to show up. Physically get into their faces. Even people with the best of intentions can quickly "forget" to handle something for you once the phone has been hung up. While docs may not feel like 4 months is a long time… it certainly seems like an eternal stretch when you're on the patient end of the stick! Best of luck to you for getting things bumped up…… aaaaaand we'll toss in some extra luck that those nodules turn out to be nothing alarming. : )  Make sure you're soaking up a healthy dose of hope with that mental prep. There's a lot of scary stuff to read out there… but then, there are a lot more of us these days, who still come out bright and shiny years later. ; )

                  Welcome – although sorry you are here.  It is all so overwhelming.  I was in denial of my diagnosis for months even though I was going through treatment.  The waiting can be very difficult as well.  This board is truely beneficial for me.  Just knowing there are others who understand helps.  Hearing their positive stories, suggestions, situations, and kind supportive words do more than most meds for me.  Good wishes to you.

                   

                    jagstter
                    Participant

                      Thank you & likewise, sorry to meet this way! Yes, I agree completely with you; we need the support of others. We constitute just a small population but the unique nature of melanoma is difficult to convey to those outside of its nefarious grip ๐Ÿ™

                      I hope the best for you, too!

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