› Forums › General Melanoma Community › What happened to my confidence?
- This topic has 5 replies, 5 voices, and was last updated 5 years, 7 months ago by SOLE.
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- March 16, 2019 at 12:05 pm
I went for the preclinical trial consent form signing and screening tests yesterday. It included a pre-treatment core biopsy sample of the big lymph node on my neck that started this journey (not fun).
It also included a lot of time sitting in waiting rooms thinking. Somewhere during all this my confidence that I made the right decision for treatment evaporated. Should I have gone to MD Anderson instead? Even though it would have been lots of travel and stress, it is MD Anderson. I just don’t know.
Is this a normal part of the journey? Worrying that your making the right decisions?
Lucy
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- March 16, 2019 at 12:10 pm
Sounds like a pretty normal part of life in general.
If nothing else, you can always withdraw from the clinical trial later (right?) and go to MD Anderson. It's not going anywhere. And as much as I love everything MD Anderson has done for my mom, trucking on down to Houston on a regular basis can be pretty stressful (I live in Michigan; she lives in Indiana). Better to go easy on yourself; less stress should help! 😀
But don't beat yourself up over your choices.
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- March 16, 2019 at 3:13 pm
Lucy, i don’t know if it’s “normal” to worry about making the right decisions, but I certainly did! In the early days of the diagnosis there is SO much information and SO many doctors and choices and opinions it can be mind boggling. I was about to lose my mind. I’m (an imperfect) Christian and kept getting the message from God to Be Still. I finally listened. I am at peace that my melanoma oncologist stays up to date on all the options and, although I may still ask her “Are you sure?” I have settled down quite a bit. I have a general onc in my town who manages my infusions , any side effects but all scans, biopsies and surgeries are now done at MDAnderson. It’s an ordeal to travel but it gives me peace of mind and I can do a better job of Being Still most of the time. Best of everything to you! -
- March 16, 2019 at 6:51 pm
Hi Lucy,
I'm pretty sure anything in dealing with this disease can be considered "normal". I would be the same way And sometimes can be even harder with someone with your extensive background in biochem. As you can tell from this board, one variable that does seem to be important is being at a very good research center/university with top level melanoma researchers. You are at Emory, so that is top notch and right up there with MD Anderson so that is good. It seems like those two variables are comparable. From your profile (biochemist involved in immunodeficienty and you understanding of treatment effect, statistical power from your original analysis of which treatment you wanted to do) you are clearly one heck of a lady that can advocate for yourself so I'm guessing you have done BOKU amounts of research. So I think you can trust your instintcs , etc. I say that as someone not facing your choice, but knowing that you got this. If you decide to come to MD Anderson, we live about 15 minutes away and if you need anyone to hang with you or place to stay, our home is yours. That goes for anyone on this board.
Many good wishes for upcoming surgery.
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- March 17, 2019 at 1:09 pm
Sounds like a case of stage fright to me. I went through the same thing — wondering if the trial I was about to take part in was the right thing to do. Maybe Johns Hopkins wasn't the right way to go and I should have gone to University of PA or Hershey Medical Center instead. Which one would have the least aggravating trip for me?
In the end, I stuck with Hopkins and have been very pleased. The trial I had been in was ended because the placebo group and the drug group were all doing well, so there wasn't a measurable benefit to it. What a bummer. But it wasn't all in vain — I have a good team over there. One of the big benefits of being in a trial was the close monitoring of how you are doing. It most likely will be the same for you.
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- March 17, 2019 at 6:29 pm
If it can be useful in any way, I also had many doubts and still do. I did not have the possibility of any clinical trials, nor the possibility for MD anderson. I refused CLND at a time where it was standard of care! And it turned out that a few months later, standard of care changed according to studies! I then learned that clinicians only apply what has been studied according to the current field of “traditional” expertise. No more, no less. And it changes from time to time. With clinical research. But my melanoma was what it was. It didn’t change! But their understanding and trial results do over time. So, what you are choosing is also your best current choice. And it sucks, let’s be honest. But it’s your best choice nonetheless. I never thought I would be able to go through it and forego all I was presented with, interferon being the only adjuvant choice also at the time. You are doing this. I am with you. We are all with you. We all went through this initially and we were all freaked out like “wounded animals” (forgive my figure of speech). You are doing this. I did. We all did and so will you. Big hugs.
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