• I need to find courage to make the right decisions

    Asked by greensmythe on Thursday, November 15, 2012

    I need to find courage to make the right decisions

    Yesterday, after receiving my first diagnosis and getting a lot of input here, I just hit a wall and could not force myself to go for the pet scan. My diagnosis was Stage 4 Lung Cancer. The doctor was not prepared and didn't even know if the biopsy was ready to review when he came running in to tell me. But, thanks to the people on this board, I now have worked to get a 2nd opinion at IU Simon Cancer Center in Indianapolis.
    Yesterday,though, I just started crying and could not face the Pet Scan that was scheduled for yesterday. I really just could face one more day of XXX from that hospital. Sorry for the language.
    I got a good nights sleep last night for the first time since all of this started and this morning I called over to the hospital to try to begin to set up the Pet Scan before my 2nd opinion appointment on November 21- next Wednesday.
    I know this is a subjective questions- but I know that my family is so effected by all of this and want to do the right thing.

    31 Answers from the Community

    31 answers
    • Harry's Avatar
      Harry

      I think you are already doing the right things. Yes, you needed to get that second opinion. And, yes, you need to get that PET scan. As for the crying, you had one heck of a week. As you get a moment to catch your breath, a reaction is almost inevitable. And, as you point out, you hadn't had a good night's sleep since this mess started.

      almost 5 years ago
    • nancyjac's Avatar
      nancyjac

      I understand that you are upset, but I guess I don't understand what your questions are or what decisions you need to make. If you didn't have the PET scan and your doctor didn't know if the path report from your biopsy was available, what is his diagnosis based on? Decision making requires information, not courage. Ask for a copy of your pathology report from you biopsy and get your PET scan. Until then you are needlessly scaring yourself by assuming the worst without any information to back it up.

      almost 5 years ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      You really have had a heck of a week. You do need to take some time to allow your diagnosis to sink in. But it is important to proceed with the recommended tests. And there is more to a diagnosis and treatment plan than the stage. I have stage IV endometrial cancer. However, I am also grade 1, which means my cancer is not aggressive. And it also depends on exactly where it has spread. Mine hit the omentum, which is the layer of fat over the abdominal organs -- they were able to remove the omentum, along w/a complete hysterectomy, so my surgeon (who is the head of oncology at my hospital) is very confident he got it all. If you look at my stats, they are horrible. But there are more things involved. And so many folks on this site have been told they had a matter of months, but they are still kicking years later. It's hard to see the positives when everything seems so dark, but the more knowledge your medical providers have, the more weapons they have to help you beat this. You are so much more than your diagnosis!

      almost 5 years ago
    • ticklingcancer's Avatar
      ticklingcancer

      Buckeye is absolutely correct when she says "It's hard to see the positives when everything seems so dark". Finding out you have cancer is a big deal and it's hard to make rational decisions when you're scared. Doing the PET scan is a must. It's a very simple procedure and will help the Doctor plan your treatment. Don't lose hope and try and certainly don't try and hide from the cancer. Now is the time to fight back. Stay positive because attitude is everything when fighting this nasty disease. Be sure and lean on your family for support. As scared as they are, they will help you through this. Come to WhatNext often so we can make every attempt to brighten your day!!

      almost 5 years ago
    • SueRae1's Avatar
      SueRae1

      Hugs, Hugs, Hugs. You are doing the right thing, you are getting a 2nd opinion, try to make sense of a really hard and frightening time in your life. It's ok to have these feelings, and they are natural, we all have them, we all have moments where we feel we can not go on. Speak with your family let them know how you feel and what your are going through, find out how they are feeling, their opinions, support each other.

      almost 5 years ago
    • RuthAnne's Avatar
      RuthAnne

      Hey, I'm so sorry about your diagnosis. I too was diagnosed with stage IV lung cancer two years ago. I hope that in itself helps you to recognize that your diagnosis does not mean you will being dying anytime soon. In addition to my lungs, my cancer was initially found in my pelvis, femur & spine, my liver and my brain. The first few months were very dark indeed. Know that they have some great treatments out there that are tolerable. I think one of the most difficult things at the beginning is knowing who to trust.
      Your life may now be filled with a whirlwind of people in white coats. Sometimes they give contradictory information and it can all be very confusing. I think that some of the best places for treatment can be university affiliated centers, so I think you've started in a good place. More importantly, find someone you can trust. They can help guide you to make the right decisions for you and your type of cancer.
      On a different note, I'm a Hoosier by marriage. My husband & his family are from Fort Wayne. We visit fairly often. Small world!

      almost 5 years ago
    • greensmythe's Avatar
      greensmythe

      I really am so grateful for all the kindness and input on this site. Although I was probably not clear, the first doctor did have the lung biopsy, but he did not know this until his nurse told him so- he was very rushed and I felt and so did my son that he was not very prepared. He stated that I had Stage 4 non small cell lung cancer. I have put all of this on the board and yesterday I, like Harry and Buckeye had observed had had a XXX of a week. I have my pet scan set up for next Monday at 7:15am and will go- and then onto the 2nd opinion on November 21. I have also located a lung buddy through Lungevity who also has Stage 4- who knows a lot of the ins and outs.

      I find this site to be very supportive and I write for my own sanity- that and my dog are great therapy. I went to see my 81 year old mother today who told me to stay positive and keep looking toward good outcomes and I know she is right. I liked what ticklingcancer said about hiding from cancer. I wish I could- but I won't and I thank you for that insight. It is very tempting to want to do so. Yesterday I was on emotional overload and needed a break to preserve myself. Knowing that Ruthanne was diagnosed two years ago with the same type of cancer is a great help and the support of Sue Ann is so helpful.

      Five years ago, on August 20, 2007 I was diagnosed with a meningioma. I under went a crainiotomy on October 24, 2007, and the baseball sized tumor was removed. I had a great recovery. Because the tumor had entered my brain I had lost some memory functions before the surgery and also had visual problems. After the surgery, my memory returned and my visual capacity was not impaired.

      Although all of that turned out in a very positive manner, this is very reminiscent and scary.

      almost 5 years ago
    • Harry's Avatar
      Harry

      "There is no living thing that is not afraid when it faces danger. The true courage is in facing danger when you are afraid." (Wizard of Oz)

      You have all the courage you need to overcome this. Fight! Live!

      almost 5 years ago
    • SherrySwett's Avatar
      SherrySwett

      When I was first diagnosed with Mantle Cell Lymphoma in January of 2010, trying to make decisions for treatment was the worst time. My cancer was in my blood so I didn't have surgery. I could have chemo at a local hospital or be part a clinical trial at University of North Carolina, Chapel Hill 100 miles from home. I eventually decided to go for the clinical trial. That extended my treatment by 80 weeks. I had Velcade four times a month, every other month as an outpatient. My original treatment was in the hospital. I had an autologous stem cell transplant in August 2010. Once I began my first chemo treatment I felt a lot more relaxed than when I was trying to make decisions.

      almost 5 years ago
    • tombo's Avatar
      tombo

      get your pet scan,,and second opinion,,i think your doing well considering,,i know its alot to take in,,you will get thru this,,pray hard,,and keep laughing,,this is a horrible rough road,,but you can do this!!!

      almost 5 years ago
    • msslappy2002's Avatar
      msslappy2002

      I'm very sorry to hear of your recent diagnosis. Though I do not have lung cancer, I do have a rare stage 4 cancer and according to many doctors, there is not a cure. Support from your family is very important and most families are biased as to what you should do. Our famlies need to realize how difficult receiving such a dignosis is for the person who gets diagnosed. Getting a 2nd and even a 3rd opinion is always a good idea. My suggestion is to always think positive and never give up. When I was diagnosed in 2009, I was told that without chemo I only had 6 months to a year to live. I have had surgery after surgery (the most recent was Monday of this week), and went on a trial study at Johns Hopkins in Baltimore Maryland and was taken off 2 months ago because the chemo stopped working. At this point, my life is in the hands of my higher power and the doctors. I always stay positive and never feel sorry for myself. Yes, I could crawl in a corner and cry but that will just waste too much of my precious time and besides we have no control over our destination. Besides, there is always someone in the same or worse position as you are. I wish you the very best and please always give thanks and NEVER give up.

      almost 5 years ago
    • Crash's Avatar
      Crash

      I am so sorry for your diagnosis. I think you know what to do, and its just so overwhelming you need to pause before continuing. Don't block the love that will come to you from your friends and family. God loves you and we do too.

      almost 5 years ago
    • princess123's Avatar
      princess123

      I think that IU has good doctors. My friend went there (after a nurse from another hospital recomended it) and did very well. Good luck. Have your cry and then get down to business. Lucky you have your son to go with you. Let him support you and help with your decissions.

      almost 5 years ago
    • LisaLathrop's Avatar
      LisaLathrop

      The "right thing" is not always what the doctors recommend...but what you feel in your heart. Confide in your family and get their take on it....put aside their "personal" feelings if you can, and have them get to the heart of the issues. You may feel this treatment or that, is the "right" thing based on time you want to have with them...but does it feel "right" to your body. Have the courage to separate the two, and then you can make a "right" and informed decision. Good luck....and yes, cry, cry, cry...that helps get the emotions OUT and you can think straight aftterwards.

      almost 5 years ago
    • SusanK's Avatar
      SusanK

      You have the right to cry. You are frightened and overwhelmed. As you get the information you need to mount your battle, you will find strength. It's all so new and confusing right now, but you will get it together as you move along. I'm glad you are getting a second opinion. Don't fear the scans; they are one of your weapons in this fight. Pray for courage and strength. If you are not a spiritual person...well, I just prayed for you.

      almost 5 years ago
    • Clyde's Avatar
      Clyde

      Get the scan asap. It will give you cold, hard facts to work from and be a great help to yourself and your Drs. Don't be afraid to cry and release the tension. Get the second opinion (after the scan) but then go back to your first Doc after the scan as well to be on an equal footing. It sounds to me like you are handling it pretty well all things considered.

      almost 5 years ago
    • Carol-Charlie's Avatar
      Carol-Charlie

      I slept through my PET Scans. Really... not noisy like and MRI... I've had many over six in the last 7 years since diagnosed with Stage IV OvarianCancer..... I'm here... Surgery and Chemo were certainly doable and I never felt pain or threw up. (I didn't lose weight either.. dang it)... But I have a family I love and who love me. We all placed this in God's hands. He has led me to here. One more grandchild... now we have 17' numerous graduations, high school and college; a wonderful grandson was married... oh how we danced that night... We've been blessed with two great grandchildren, one boy, one girl.. Oh.. and after surgery I was cancer free in each PET Scan... I was cancer free on the last one three weeks ago. Fight this... Stage IV didn't kill me. So get to the doctor and do what he says. Ask God to guide you and Follow His lead. He will give you strength. God Bless you.

      almost 5 years ago
    • BoiseB's Avatar
      BoiseB

      I can only second many suggestions Two I want to emphasize are Cry and be honest with your family. I did neither. My brother finding out about my actual condition lead to my second opinion (which given by my nephew, a doctor) I am yet to cry but I am sure I would sleep better if I could. By your last statement, I see that family is very important to you. Let me advise you that you must be brutally honest with them. It is the best way. I was not. I was selective about how much I told different members of my family and didn't want them to communicate with each other. Big Mistake!!! I hope others can learn from my mistakes

      almost 5 years ago
    • KatieL's Avatar
      KatieL

      I am sending you positive energy and prayers. You have done all the right things, I think, in particular, arranging to get a second opinion. A cancer diagnosis can just stop you in your tracks. Have a family member or good friend with you for all appointments; a small tape recorder is handy for remembering the details of visits.

      almost 5 years ago
    • BigCWife's Avatar
      BigCWife

      I would like to add one more thing -- initially they felt my husband was stage 4 Lung Cancer and the doctor was not real encouraging, believe me! We left rather shook up, to say the least. This information was after a biopsy. But then he did a PET scan, and found out that the area in his bone (where they thought it had spread) was NOT cancerous and he was immediately downgraded from Stage 4. So go get that PET scan - maybe you will get some great news as a result of it like we did! Incidentally, my husband is through with 4 rounds of chemo (cisplatin and etoposide) and 35 radiation treatments. His hair is starting to grow back in and he is feeling really quite good. We have a lot to be thankful for this Thanksgiving!

      almost 5 years ago
    • BoiseB's Avatar
      BoiseB

      One thing don't don't confuse diagnosis with prognosis. Your diagnosis is " yup it's cancer" Your prognosis will fluctuate like a ten day weather forecast don't worry about it.

      almost 5 years ago
    • journeyspath's Avatar
      journeyspath

      Don't be so hard on yourself. This is a very stressful time for both you and your family. All you can do is take each day one at a time. You will go through many emotions throughout this. You are only human and they are natural. If you feel like crying, cry.

      almost 5 years ago
    • journeyspath's Avatar
      journeyspath

      Don't be so hard on yourself. This is a very stressful time for both you and your family. All you can do is take each day one at a time. You will go through many emotions throughout this. You are only human and they are natural. If you feel like crying, cry.

      almost 5 years ago
    • journeyspath's Avatar
      journeyspath

      Don't be so hard on yourself. This is a very difficult and stressful time for both you and your family. You will go through many emotions during this time. You are only human. If you feel like crying, cry.

      almost 5 years ago
    • Anita's Avatar
      Anita

      Sounds like you are already heading in the right direction. I understand the feelings I wanted to run as fast as I could when I first was diagnois.Second opinions are a good thing, having the PetScan is also a good thing..that way you will know where you stand , how to fight.
      You will be in my prayers for courage,for the correct caregivers to be put in your path, and of course for your health

      almost 5 years ago
    • Anita's Avatar
      Anita

      Sounds like you are already heading in the right direction. I understand the feelings I wanted to run as fast as I could when I first was diagnois.Second opinions are a good thing, having the PetScan is also a good thing..that way you will know where you stand , how to fight.
      You will be in my prayers for courage,for the correct caregivers to be put in your path, and of course for your health

      almost 5 years ago
    • skyeblue's Avatar
      skyeblue

      My attitude was "I want it done yesterday." I want that cancer out, out, OUT! So I had no hesitation as to the next step, I was pushing the whole way. But I already "knew" by the time I went to the doctor. If this hit you out of the blue, the key word is "hit." I think you are frozen because you are probably trying to tackle the whole problem in your head. Just do the next step. You don't really know what the future will bring, so don't even think about it. Just think about what you have to do, right now, to get healthy.

      almost 5 years ago
    • Shoeless' Avatar
      Shoeless

      Anyone who has ever received a diagnosis of cancer is or was scared. The good news is that yours is non-small cell. Even small cell cancer can be beaten, but it's a harder battle than non-small cell. Stage 4 simply means that it has metastisised (spelling?). The pet scan will show exactly where and how much. My prognosis was not good, according to the local doctors - 3 of them advised me to go home, be with my family, and enjoy what time I had left. My response was "WRONG ANSWER, DOC". That's when I found the Melvin and Bren Simon cancer center on the internet. They work miracles there every day.

      almost 5 years ago
    • rlclark93654's Avatar
      rlclark93654

      I am kinda new to this but I will offer what I can. The hardest thing for me was to "accept", actually say that I have breast cancer. I cried, was scared and didn't know what to do. I felt I had to remain in control of everything about my treatment and when I realized that I couldn't control all of it I had to accept it. Know what you can do and take action there first.......get the second opinion, do the pet scan (which I know first hand is terrifying), get everybit of info on your cancer that you can digest, know ALL of your options and last but not least.....MAKE YOUR OWN CHOICES...it is not the doctors life, it is not the social workers life...it is YOURS, only you know what you want, how you want to live it and therefore how you want to proceed. My faith helps me, strengthens me and gives me the courage to go on.

      almost 5 years ago
    • DanaLeigh's Avatar
      DanaLeigh

      My name is Dana and I live in Oroville, WA, Until a couple of weeks ago, I thought my Stage IV non small cell lung cancer was the primary reason for cancer being in my body. Since moving here on Nov. 4th and got new insurance, new Oncologist, new primary care, Hospital...you name it...Her name is Mandy Robertson (my Onc.) and if anyone deserves her name shouted from rooftops it is her. I got diagnosed in July.
      They waited QUITE A WHILE to perform a ct/pet scan after a plain old chest pain brought me to my primary care to see if it was anything to worry about that since I had had pneumonia in Oct. 2013 and had spent 4 days at Providence.
      On Feb. 28, prior to my above mentioned chest pain x-ray, I received a procedure that stretched out my stomach opening and moved muscles around my external esophagus. Still no mention by surgeon of poss. problem.
      Well, I was given a clean bill of health and sent on home.

      Well, then all the bells and whistles went off...I was made an appointment with their Cancer-Partnership, an appt. with my surgeon, which made no sense to either of us...she was as stymied at I, but she began to cry and say she was sorry over and over, me, I don't know what
      the radio graph had to say, be she as very upset.
      Then I picked, out of a series of pic's and bio's, an an Oncologist to take over my case. He in his perpetual wisdom decides to limit the ct scan chest, front only. A diagnosis is made: NSCLC,
      Adenocarcinoma. Also, don't mind my spelling, grammar, etc. Also we have chest wall tumors, plural effusion, also lymph node involvement. Oh, and note finish chemo cycle and discontinue.
      Not a word was discussed with me.

      Well, I got over here November forth and was seeing my primary within days. I had and appointment right away with Mandy. SHE is had me in yesterday for both oral and injection contrast dye Barium to drink and iodine for my veins. She checked over my chest, abdomen and pelvis. That's someone who wants to get to the bottoms of things.

      I have until the 29th and I have an appointment to go over the results area of concern, over area of concern, which by the was I have never been offered before.

      YOU ALL HAVE BEEN A GREAT, PATIENT READERS. I KNOW I WAS ALL OVER THE PLACE

      over 3 years ago
    • Paulag1957's Avatar
      Paulag1957

      I have never had a pet scan-will be 6 years in may-non small cell lung cancer-always had ct scans-I feel this is odd-comments appreciated

      over 3 years ago

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