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  • #55166
    cohanja
    Participant

    No, that most of the melanoma cells seen in the nests are negative for Ki67 expression

    #55167
    Worrywart
    Participant

    cohanja – I’d pick your favorite/lowest risk report and chose to believe that one. Throw all others out. I’d choose to believe the best case scenario.

    #55168
    casey188
    Participant

    That’s what I have done. Actually I kind of split the difference. I refer to my mel as very early and curable. Words straight out of the mouth of Dr. Mihm!

    #55169
    cohanja
    Participant

    I thought someone had said Mihm gives the worst case scenario.

    #55170
    casey188
    Participant

    What I said was that if his reading of my pathology was my worst case scenario, then I was in good shape. I said that because his finding was still a thin mel and he is extremely thorough. Don’t know if anyone else used those words in a different context though.

    #55171
    cohanja
    Participant

    Ya, I think it was someone else earlier that said Mihm will give you the worst case scenario. . which is not a bad thing

    #55172
    cohanja
    Participant

    In terms of picking the best report and choosing to believe just that one, I guess while I want to be optimistic, I also want to be realistic. If one or two opinions identify VGP, I can’t “undo” what they’ve seen by choosing to just believe one of the other reports that only listed RGP. I just can’t believe pathology can be so subjective, so different report to report. It’s kinda crazy. You’d think it would be more of a science than an art form. So, I guess I take it all in from every report and sort of believe all of it and figure it just must be an unclear case as to RGP vs VGP. The one thing that has been pretty consistent, though, across reports is Breslow. .I’ve gotten 0.2, 0.3, 0.33, 0.34. Some list partial focal regression, some list no regression. Some list a dermal mitotic figure, some list no dermal mitoses identified. Some list RGP, some list VGP. Some list VGP due to dermal mitotic figure, some list VGP due to dermal nest size. The reason I’m so stuck on this, though, is because it seems like a huge difference in terms of peace of mind RGP (which is theoretically unable to metastasize) vs VGP (which you would worry a lot more about in the coming years). But, I probably won’t ever get a definitive answer one way or the other, since I’ve already obtained 5 reports and some say one thing, some say another thing.

    #55173
    Catherine Poole
    Keymaster

    You remind me a lot of a past participant here, his name was Toni. He really had some issues trying to move on with his life after being diagnosed with a low risk lesion. It started to affect his relationships and life in general. I think it is time you move on and live in the moment because that is all any of us truly have. And if you continue to be involved here, make it about others not yourself. Use your knowledge to help the new ones that come here. I think you’ve come to this conclusion yourself and fortunately we have a board who is generous and understanding. Have a great holiday!

    #55174
    cohanja
    Participant

    How is Toni now? I guess I’m not sure I agree with “low risk” as we all know there are thin lesions that are high risk, maybe as many as 10% of them that go on to develop metastatic disease. What constitutes a higher risk thin lesion is not completely known/agreed upon it seems like yet scientifically, but let’s say 90% of thin lesions are lower risk and 10% are higher risk (or even more if male, mitotic rate > 0, VGP. . can be as much as 30% recurrence in some studies) – how to identify if your thin lesion is high risk may impact the kind of follow up you opt for – more aggressive. So, I think trying to get a definitive answer as to whether an individual’s thin lesion is high risk or low risk is not “failing to move on with life” but rather trying to be diligent and being an advocate for your own care when some might say “oh, don’t worry, it’s low risk” when it may not be. . I think we’ve all heard multiple stories of people who were told they will never have to deal with their thin lesion again, it’s low risk, don’t worry about it, etc…only to have it recur later or metastasize. I think it’s inevitable once diagnosed with any kind of cancer to have it affect/change your life – it does. It changes us, I believe. Maybe in different ways, but how can it not affect our lives? We can choose how to respond to that, but still it is a life changing thing for sure. I am not the same person I was a year ago before all of this, but I think that is “normal” in terms of how this goes with such a thing. In terms of being a “pitbull” trying to get at a definitive answer pathologically – that is just how I am with everything, not just this. . I want straight answers, I want the accurate information. If someone comes to me at work and I ask them a question and they give me 5 different answers and tell me to pick whichever I like, I’d look at them like they were crazy. Outside of melanoma pathology, that is not how the world works. Apparently, with this, it alsmost seems to be the norm, which is what is so frustrating about it. Also, I do try to help new ones that come here when I see a question I might have some input into, I try to respond with something that might answer their question of be of value to them. At the same time, I still also like to use the forum and the knowledge/experience of the users, to get at information that I’d like as it pertains to myself as well. I think it’s ok to do both. I hope so.

    #55175
    Worrywart
    Participant

    I’d go as far as to throw away the other path reports, keep your favorite/best case scenario, and look at it daily. Who cares about the other ones. MANY people NEVER even get a 2nd or 3rd opinion. You have covered all your bases and ALL have confirmed a LOW risk SHALLOW lesion. Tape your best case scenario onto your wall by your computer and look at it and forget the others. You say you want to be realistic…why? Nothing changes if you are realistic except your mental state. Your treatment doesn’t change. Your future doesn’t change. You have to accept this. IT IS WHAT IT IS.

    #55176
    CathySoCal
    Participant

    Cojana,

    I have been following your struggles and frustrations, and have to say I agree with Catherine. There was a time a few weeks ago when I did not post a question because I knew it would cause you some anxiety. Just waited til I saw my derm, who gave me a good response.

    You say that you are seeking knowledge – that being knowledgeable will empower you.

    It’s time to get honest. You are not looking for knowledge. You are looking for control.

    It seems that you are under the impression that the more knowledge you acquire, the better you will feel. If you stand back and look at it, tho, I think you’ll notice that every time you come across a new nugget in your search for knowledge, you find yet another reason to be anxious, another trail to hound dog your way down. Your quest for knowledge is not helping you. It’s keeping you from dealing with the reality that you have no control over this situation.

    This whole experience can be a humbling one for all of us because it brings us up close and personal with our own mortality. That’s scary. There is also grace in it. The grace comes from understanding that in this life there is not much we are truly in control of. So it is easier to let go of the stuff we can’t control (like recurrent melanoma) and focus on what we can control.

    Maybe one of the few things we are in control of is how we respond to a situation. I’m not talking about how we feel – obviously that falls into the category of what we cannot control. I’m talking about how we respond to those feelings. If a cop pulls us over for speeding, we may be furious that he didn’t pull over the guy who passed us instead. The majority of us will conquer that anger, and act politely to the officer because we are absolutely in control of how we respond.

    Your wife can probably tell you exactly what it’s like to understand that you are not in control. I’m sure she lovingly did everything she could to be vigilant about her pregnancies that sadly miscarried. I wonder if you’ve ever discussed with her about when she realized that some of these things were simply beyond her control.

    Also, I wonder what you would tell your daughters to do if one of them was in your situation. Really think deeply about what your advice would be.

    Back to the grace of acceptance. We struggle so hard to hold onto something that we really don’t have in our grasp. The thought of giving it up can make us feel as anxious as if we were about to jump off a cliff.

    Dude. Time to jump.

    That control was never yours. And there is so much peace in knowing that.

    It’s Independence Day – you deserve some from all your anxieties, and I hope you find it!

    All this said with love,

    Cathy

    #55177
    cohanja
    Participant

    Cathy, just wondering what your question was from a few weeks ago, and what your derm’s answer was. Only reason I ask is maybe I have/had the same question.

    I hope I never have to be on here asking for advice about stage III or IV treatment options; but, I’d like to think if I had to, I could and that it would be an open and safe place to do so. Also, I know I learn a ton from reading about other people’s cases when they write about themselves, their cases, what they’re being told, questions they have, etc. . . so, hopefully even if we’re posting about our own cases, there is still something to be learned by others reading, maybe questions that will arise about their own cases, etc. . so hopefully posting about ourselves is ok and still can be of value to others reading. I know when I first came to the forum, I started by reading all about other people and what they posted and I learned a lot.

    In terms of what advice I’d give my kids if they confronted an illness, I’d probably tell them a lot of things, but the #1 most important thing I’d tell them is to make sure they seek out the absolute best doctors/hospitals/medical care they can possibly find to deal with their disease, which includes ensuring everything from surgery to pathology to follow-up treatment is spot on and nothing is missed or overlooked, and that you must be your own advocate cause nobody else will be.

    #55178
    Catherine Poole
    Keymaster

    Cathy,

    What an incredible post you gave us, a nice Independence Day gift. Yes, we all want control over our lives but it just isn’t possible. Some folks have every mole taken off their body in this quest, or have tests done that they don’t need. But I need not say more since you said it so well. Let’s all take a break from the anxiety of this disease as often as we can. We have much to be thankful for and should try to enjoy the good moments we have!

    #55179
    casey188
    Participant

    And there it is Cohanja. I have told you that is why I don’t stress about recurrence. I know I had an excellent surgeon and one of the best pathologists in the world reading my slides. That is where my control ends. I believe I have shared with you my own struggles trying to control my situation and digging my own hole deeper in the process. That is why I will never get a third opinion. At a certain point it important to take a step back and put some distant between you and the situation. I took a break from the forum for awhile and stayed away from Internet searches. I let my self check in here after a few weeks to gauge whether I couldhandle it. I alsopracticed the principles of Cognitive Behavioral Therapy I told you about. Once you give your emotions a break and time to heal, it is easier to accept the things you can’t control. It is hard work to move forward but there will come a point where you can say it is what it is and be OK with it. As much as I wanted a definitive answer, it was only when I truely realized that wasn’t going to happen that I could move past it. Now I am back trying to use my experience to help others.It reallyputs things in perspective for me as well because it helps me see how much progress I have made. b

    #55180
    cohanja
    Participant

    Worrywart, in a sense my treatment may change. If I could get a better gauge on my specific risk, then maybe I only need to see a derm, or maybe I need to also see an oncologist every 6-12 months, or maybe I don’t need to do that. I really don’t know. If I had a better sense of my true risk, I could better make that decision, and not overdo it with Dr visits I don’t need, or not underdo it.

    I also think I’m a little more anxious around this particular time because in about a week it will be 1 year since this all happened (biopsy July 14, 2011. . results July 18, 2011). A year ago today, I was happy go lucky. A little after that, everything changed.

Viewing 15 posts - 16 through 30 (of 63 total)
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