• Does anyone find it really hard to research your diagnosis without getting really upset?

    Asked by michelerainh2o on Wednesday, June 10, 2015

    Does anyone find it really hard to research your diagnosis without getting really upset?

    20 Answers from the Community

    20 answers
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      Yes!!!!!! My Cancer was found in the later stages . I read books on it and researched the Internet growing more depressed with the increased knowledge. Thank goodness I had a strong support system of family and friends and my primary physican saw my weak coping mechanism and placed me on mild anti-depressants. If ever there was a reason to pop anti-depressants, it is a diagnosis of any stage of Cancer!!! That "oh no"moment is TERRIBLE! When I met with my GYn/onc for the first time I wanted the truth and nothing but the truth, and got it. As hard as it was for me to hear somewhere inside me( and I am sure the anti-depressants helped with this) I started moving forward.

      over 4 years ago
    • cllinda's Avatar
      cllinda

      YES! I tried doing research on breast cancer, clear margins, and other things pertaining to my cancer, and I would just start crying. The doctors want informed patients, but it was just so hard. Finally, I just stopped trying to look up about my illness and trusted the doctors. I couldn't even go on sites like this one, because I would read something and the waterfalls would start. But I'm so much stronger now, and I read this site faithfully and try to answer questions honestly, to help other people.

      over 4 years ago
    • michelerainh2o's Avatar
      michelerainh2o

      My Dr has me on anti-depressants & anxiety meds. My family begged me to stop trying to do any type of research, and up until two nights ago I hadn't looked at/read anything for a spell. I seen headlines in the news paper about cancer and read the article which landed me on the computer and here I am! I was very emotional about joining the site- so much so I couldn't even figure out how to do it last night!! lol that's pretty bad, but I'm soooo happy now that I did- thank you soooo much for your comments!

      over 4 years ago
    • SandiA's Avatar
      SandiA

      I went on line and my family and doctors both told me to stay off the internet. It was really making me upset. I also went on anti anxiety meds. It was kind of a funny story how I got them. I had a breakdown at the doctors visit and my sister was with me. She said to the doctor can you give her something for that because if she doesn't take it I will. Haha! We laugh now because we never saw a doctor write a prescription that fast.

      over 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I guess i had a pretty good idea what the prognosis was for my cancer. But, for some reason, i decided i would live, no matter what the stats or doctors said. It was important for me to stay very positive for my mom. My dad and my stepdad both died of cancer. I told her i wasn't going to die. So far, i told the truth!!

      I find it counter-productive to do too much research!

      Best of luck!

      over 4 years ago
    • michelerainh2o's Avatar
      michelerainh2o

      SandiA- that is a funny story!! Thanks for the laugh! LiveWithCancer- I believe you are right! Thank you all!!

      over 4 years ago
    • GregP_WN's Avatar
      GregP_WN

      yes it can get you tore up pretty quick. Mostly because the numbers are just "numbers" and they are not MY numbers. If there is a 30% chance of survival, I am going to be in that 30%! I done the same thing after diagnosis last time, I had all my information ready for my oncologist at my first meeting. After I asked all my questions, he asked, You've been on the internet haven't you? Stay off of that! He said this is nothing, we do this every day here. That calmed me down, and I didn't get back online, to research my dx anyway. That's good advice, stay off the researching, we are not doctors, and misunderstanding the information that you find will just make things worse. Best to you!

      over 4 years ago
    • buffcody's Avatar
      buffcody (Best Answer!)

      "Know yourself." What Socrates said almost 2500 years ago applies here. Researching melanoma can be useful and not disturbing to some people. To others, it can be a nightmare that one does not need to put oneself through. There's a natural curiosity to know as much as we can, especially if it affects our own life.

      AS for me knowing myself, I find the more knowledge I have about something that I am dealing with the more control I feel I have over a situation.And I do like being in as much control as I can be. That has been true in many aspects of my life before my Stage IV melanoma diagnosis. The diagnosis of Stage IV came out of the blue for me. It was first spotted at that stage. The primary has never been found. I had a lot of questions that doctors were not able to answer. I was interested in answers, even though now I have to confess the answers if they had come, and they didn't, would have little or nothing to do with treatment decisions. Mostly nothing. But, if I had not tried to research the question myself of my more rare "no primary found" melanoma, I don't think I would have been at peace with the lack of knowledge as I am now.

      Once I recovered from the shock of the diagnosis out of the blue, I found learning more about the disease helped. It's been in the press enough lately that just because you're not Googling all sorts of things, you're going to hear about the latest treatments. And thank God, there ARE latest treatments. The prognosis statistics are based on old data from times when these new better therapies were at most in their infancy. If you decide to do your own research for whatever reason, though, you also need to know yourself well enough to know your limits in making accurate judgments about the information and deciding even before that what kind of reading would be worth doing. For example, knowing about the treatments available has enabled me to play an intelligent role in the decisions my doctor and I make about treatments. It has enabled him to have a more collaborative relationship with me, because he doesn't have to explain everything from ground zero.

      Melanoma treatment possibilities that have become mainstream during the past few years and others still in clinical trials provide hope to people like ourselves for whom, if we had been diagnosed a few years before, did not exist. Reading about those has enabled me to be more optimistic about my chances and not more depressed.

      Another positive outcome of time spent on the internet has been positive interaction with people who know a lot about the disease and its treatment than I do.. I have learned a lot and been given a great deal of support particularly through the Melanoma International Foundation forum for Stage IV patients. The information you get from reading and participating in that site is well vetted. It's accurate. If you don't understand something, others are available to explain. There are top docs and other experts who are supervising the forum or in other ways contributing to it, so bad information doesn't last on it. And there are encouraging stories, a lot of them, of people who are doing very well in their fight against the disease.

      So is it understandable that going on the internet to look for answers is something a lot of us want to do. Of course. Should we do it? Know yourself. You don't have to. That's not a requirement. Is it always bad to do so? I personally don't think so, but I know this better now about myself than I did over three years ago when I was first diagnosed.

      One more thing. I've hit the point now that I don't want to spend all that much time thinking about it. At times, melanoma has become more of the focus of my life than it should have been. I feel well enough now and am not in the throes of making a treatment decision to be able to "take a vacation from it." I pretty much know everything now that I need to know to be an "intelligent consumer." If there is something new and big out there, I trust my doctor will know about it and much more about it than I will or need to. If it is going to affect me, I may do some more research then. I have other things to think about now in my one life than the disease that may or may not end it. I also have other things to do. I've cut way down on time spent trying to learn more or other forms of involvement with it on the net, even though this long email and my participation in this site might suggest otherwise.

      After all this writing, the big thing as others have said comes down to whether you find trying to know more about your disease on the net is helpful or hurtful and what sources there meet the "good source" criteria and how you can determine if they do or not. If trying to learn more on your own makes you anxious, depressed, or even frightened the answer is right there. You won't need to do so to get an A in the life course in Living with and Treating Melanoma. And I hope you do get an eventual A in that course, the course we are both taking. If you still want to give it a try, nothing wrong with that either. Know yourself.

      over 4 years ago
    • geekling's Avatar
      geekling

      I find research comforting.

      I don't like others making decisions for me.

      Everybody is individual.

      over 4 years ago
    • cam32505's Avatar
      cam32505

      I had symptoms of uterine cancer, but try as I might, I couldn't find anything on the internet that said anything other than uterine cancer (so, now a real shock to get the diagnosis by phone at work!)

      over 4 years ago
    • michelerainh2o's Avatar
      michelerainh2o

      buffcody- Pleased to make your acquaintance! Thank you so much for your input; I too was diagnosed out of the blue with stage IV and of unknown origin. Of course I was blown out of the water with the whole cancer diagnosis, but then to find out after a PET and extensive examination that there was not a spot or mole to be found cancerous on my body just totally blew my mind!! It's a tuff one to explain to family & friends.

      You hit the "nail on the head" so to speak with your comments in regards to the information one can come across on the internet being dated material, and that the treatment options we have are just coming out of their infancy stages.

      Thank you again- I really enjoyed what you had to say, and so well written/said. I appreciate the tip on he Melanoma International Foundation forum, and that it has the latest and greatest information as well as being policed by some top docs. I plan on checking that out- it sounds like it would be some very good information for me.

      It's only been 4mnths since my diagnosis so I think "shock-mode" played/playes a lot into my reation to info. You ultimately are correct tho- to each his own on the research & that we all have that "natural curiosity" in us.

      over 4 years ago
    • Rolltidelynne's Avatar
      Rolltidelynne

      I was aware before my dx to not look online. But you know how it goes..say you can't do something and what happens? You do it!! Lol The difference was my cancer really has not been updated in 2012. According to the internet I should have been a black man who worked in the oil industry and was around 50+ yrs old!! Well that explained EVERYTHING!! Now I could really say I had b***s!! Lol Needless to really say that isn't me!! It also said the lifespan was 5 yrs. My issue then n since I really have NO idea what yo expect as my cancer goes on. Right now I'm in remission n doing pretty well!! My meds keep me functioning on a daily basis. Looking at me, you would never know I have cancer:) I do tire easier and I might be a little slower but I'm here!!!:)) I didn't find this site until AFTER I had gone through my mine treatment w chemo, radiation, and SCT. I do wish I had known bout it earlier n used it!! These folks are awesome n they can share answers to most everything you need!! We will be truthful, yet tactful, and ALWAYS we say check w your drs that what we do would be ok for you!?!?! We donot want you to do anything that would disrupt your progress:)) lean on us, add us anything, you can even vent here!! No wrong questions!!!

      over 4 years ago
    • Rolltidelynne's Avatar
      Rolltidelynne

      Welcome to what next!!! Please let us know if you need anything:))

      over 4 years ago
    • michelerainh2o's Avatar
      michelerainh2o

      Thank you sooo much Rolltidelynne!! BTW- I know some Bama fans/natives soooo roll-tide-roll!!

      over 4 years ago
    • Rolltidelynne's Avatar
      Rolltidelynne

      Thank YOU!!! You know when we see another BAMA "fan/person" we don't say the typical hello or how are you... We simply say "Roll Tide" and they respond in same manner!! It's awesome!!! Nothing like it:))) proud to be a southerner, proud to be an American, and proud to be a BAMA a fan!!!! Ha ha ha Roll Tide:)

      over 4 years ago
    • DJS's Avatar
      DJS

      No -- and here's why: I have a Master's in Information Science, and I know that it is KEY to block out information coming from unverified or unreliable sources. This means when I research my various ailments I don't go to blogs, consumer magazines, well-meaning friends, etc. I only go to sources that have information that can be backed up with scientific studies, like the New England Journal of Medicine. I have saved my life numerous times -- read that again because it's important -- because my brilliant doctors don't always read all the studies being done in their field. For example, I was convinced that one or more of my medications was responsible for my getting adult onset diabetes. I hit gold when I found a class action suit against the makers of one of my drugs. Through the filings on that case -- all on the web -- I was able to get the study showing that the interaction between that drug and another one I was on was slowing killing my pancreas. I also found in the same study the drugs that were recommended to replace them. I fought my doctor all the way to the head of his department at the hospital (not to mention my husband) because the thought was it was worth getting diabetes to solve the other major health problem (not to me), I was allowed to change drugs (on the condition that should any problem start to turn up we'd go back to the others), and…I was right. The turn around took three days, and it has changed the way patients are treated by my doctor. I have a tremendous sense of power over my body and it's care. Knowledge Is Power. (Just make sure that knowledge is not crackpot science!)

      over 4 years ago
    • barryboomer's Avatar
      barryboomer

      Yes & No......I have learned a LOT from all perspectives and from an educational point of view it's interesting but then again it can scare you to death.

      over 4 years ago
    • Tpeck2's Avatar
      Tpeck2

      Wow! Thanks so much for asking this question, and thanks to everyone who has responded. It has helped me out. I was just diagnosed, sentinel lymph node positive, rest removed (don't yet know results), PET showed small blip, but CT a week later showed it had reduced a great deal and was too small to biopsy. And I have no sites on my skin, nothing. The flip is that my oncologist told me that he is very busy and probably most consults will be on the phone. He also told me to go to the internet to research and think about if I want to do a wait and see approach (with regular scans) or interferon. All I can say is that reading through this has helped me a great deal. Again, thanks for the question and thanks to everyone who has responded. I'm still shaking in my boots, but maybe not as much!

      over 4 years ago
    • michelerainh2o's Avatar
      michelerainh2o

      Tpeck2- I'm glad my question helped you out a bit! I'm so thankful to have found this site & so grateful for everyones input. It does help. My heart kind of sank with what you had to say about your doctor being very busy, and may only be able to discuss things over the phone with you. I will be thinking of you, and put you in my prayers.

      over 4 years ago
    • Rolltidelynne's Avatar
      Rolltidelynne

      Tpeck2, I'm a little concerned too about his comment to you...but if you're ok w it, I will DEFINATELY keep you in my thoughts n prayers:) please keep us updated through your journey! I love this site n these people!! I've learned a lot!! I've also learned a lot about myself and I credit them n this site for making my journey a lot easier!! We are all here for each other!!! Have a great week:)

      over 4 years ago

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