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The first time you heard the diagnosis


KatieB

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How did you learn of your loved ones diagnosis?

Would there have been a better way? Would it have been better to have learned about it when you knew the full dx., or would you prefer to have been involved from the very first initial dx. ?

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My husband was rushed to the hospital with chest pains and before the day was over we found out his heart was fine but he had lung cancer.

The doctor came in to talk to him and I and we were prepared for heart issues and when she blurted out lung cancer I almost fell to the floor. We had no idea.

Having been through lung cancer with my Dad a few years ago I was devasted.

Even though we had to wait for scans to know the full extent of the lung cancer I feel we both were glad to at least know what we were preparing for from the begining.

I do feel the doctor could have been a little less blunt and a little more caring. While I don't feel that either of us was looking to be "coddled" I sure would have appreciated a little more compassion.

Needless to say, we found another Oncologist which has been a blessing.

Jean

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I came home from work to my parents house- knew he had been to the doctor....when I walked in my dad just blurted it out. "I have lung cancer"

I didn't have any information as far as stage or type and he hadn't even had a biopsy yet- just the scans and the ENTs report.

I called his regular GP and demanded to speak to him myself so that i could ask questions. He didn't answer any of my questions and said none of it mattered. He told me my dad had LC, there was nothing they could do for it and he'd be lucky if he lasted til christmas (4 months). I was livid and scared.

Fast forward a couple of years after my dad passed away (he lived almost three times longer than that initial prognosis by the way) I went back to that medical office.

That stinky doctor and my GP are in the same office building. I learned that Dr. Doom's mother was just dx. with lung cancer.

While I don't wish LC on my worst enemy, I 'll bet you that he uses more tact and compassion when talking to other people about the disease now!

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its engrained in my memory!! DEb developed a nasty smokers cough. SHe lost her voice and we thought Laryngitis. Our FAMILY DOCTOR was right around the corner from where she worked so she went to see him and get it checked out. He took x rays adn saaid we need to call randy because I am afraid this is not going to be good news. AMn I broke the sound barrier gettin from work to doctors office that day!!

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That my husband has stage 4 adenocarcinoma in both lungs with a spot on his hip. He was feeling bad late in the summer then came down with pneumonia. After an abnormal chest xray, had a CT scan - again abnormal. Then he had a bronchoscopy that came back negative for cancer.

Doc said it was probably auto immune so he went for a needle biopsy 3 weeks ago. Came back positive. Then to PET scan. Found out two weeks ago it is stage 4. He started chemo 10 days ago - it only took 4 days for everything to get into motion.

I'm still kinda like the deer in the headlites. A month ago we were laughing and joking an planning our retirement. Now, I'm working, taking care of him and the kids and wondering what will happen.

It's very overwhelming. And I'm not even the one who is sick.

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We knew from previous tests that Dad had a spot on one rib and a rather large tumor on his liver. The liver had been biopsied - and then he developed blood clots in his lungs. So - he was in the hospital for the clots when we received the diagnosis/biopsy results. It was a Sunday night. The most compassionate doctor (not the oncologist) gave us the news. He assured us that when Dad got discharged - we would not be left wondering what to do next, but there would be a team of people working for Dad.

My sister (who is a nurse) and I had decided that worst case scenario would have been primary liver cancer and that otherwise - it would likely be a cancer that spread from elsewhere so we were not in total shock. Nevertheless - "a type of lung cancer" was hard news to hear.

Not 5 minutes after the doctor spoke with us and we were trying to digest everything -as if on que, a ton of visitors/family poured into the hospital room and the phone was ringing off the hook from the rest of the family. My poor Mom seemed sick to her stomach. I guess sometimes God just sends distractions to get you through the moment.

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Because the doctors and specialists were SO SURE that is was not cancer, and even acted annoyed when I asked more questions about it being cancer, I was not at the appointment. I left for NC the day after his broncoscopy, a trip that I had planned before all this. Everyone insisted I still go because it was nothing to worry about. The pulm. was supposed to call with the results but ended up calling him to his office.

I learned of my husbands cancer at the gate in the airport waiting for my return flight to board. Alone. More so, my husband was alone when he learned of it as well.

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The day after carrying packages from the restaurant where our daughter's wedding shower had taken place, my husband complained of back pain. Seemed understandable from the lifting so we nursed it for a couple of weeks and then he went to the GP who said it was sciatica. About three weeks later, I rushed my husband to the ER with chest pains. He has a history of coronary artery disease. After the heart workup, they took a second look at the X-ray and saw a spot. But we had been released. I was grocery shopping and came home and my husband told me to sit down....that the hospital wanted him back for a CAT scan. So we went back. Our kids came and waited with us. It was pretty clear the doctor on call wasn't anxious to share the news but just told us to see a pulmonologist, that there were numerous spots and enlarged lymph nodes. From there on, it was a blur....many appointments etc....to the final diagnosis of stage 4 adenocarcinoma with mets to the bones and brain. Our lives were perfect up until that point. And now, we are living hour to hour in this lung cancer twilight zone.

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After my Mom finally admitted to me she was having problems and showed my a huge enlarged node on her neck, we went to the ER because she didn't have a doctor. Actually we went the next day because I first tried to get her in with a doctor. They did blood work and a chest x-ray. The blood work was messed up from SAIDH and her left lung was "obliterated"/whited out" according to the ER doc. Since she had no doctor, a hospitalist came in. He was slow, but he was great. He told her it looked like lung cancer and since the blood work showed SAIDH and she was a smoker it was probably small cell which responds well to chemo. Then he asked our preference for an oncologist and began ordering more tests and a room. Then we waited, and waited for a CT, a brain MRI and that darn room. As we sat there, I could hear everything they said outside her room and they kept calling about when room 6 could go for her CT for the "massive chest mass". I also hear them say metastatic lung cancer.

She admitted to me that she had a dream that she had had an FNA on the mass and that it was lung cancer. The pathologist that actually did the FNA was different, but she was right. :(

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My Dad had SOB and a pain in his right shoulder. His wife had a GP that my Dad was comfortable with and he went to see him alone. My Dad never trusted doctors but he suspected lung cancer from his extensive smoking history and something just not being right.

He had a chest x-ray and went back alone for the results. When he left the parking lot of the doctors he called me and said I have a tumor in my lung, it's cancer. While still on the phone with him, I googled benign lung tumors, lung cancer and cancer in general. I cried (wailed) and said "Dad this isn't good". He agreed and asked what he should tell M, my stepmother. She was working until midnight and this very night she learned, her sister, who had raised her, was involved in a head on collision.

I told him to hold off until she came home. Nothing was going to change in four hours.

This was the worst day of my life. My Dad was so brave.

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Mom was originally thought to have lupus, or some other auto immune disorder.. She had excruciating pain in her ankles and knees and had been off work for several months awaiting some kind of diagnosis or answer from her doctors, some kind of pain management, cure, SOMETHING. She was devastated enough thinking she had lupus and would have to live a life full of pain and fatigue.

The day I found out I was coming home from an explosive argument with my would-have-been mother in law, who had tried to insult my mom. I flew into a rage at her over it.

I was at home, recounting the events to my mom in a joking sort of way, when she stopped me and said "I'm sorry that I have to tell you this because you're such a happy girl, but I have to tell you. Doctor __ phoned. I had a chest x-ray. I have lung cancer."

I still feel guilty that I wasn't there at the time she found out - that I was off arguing with some woman who wanted to talk bad about my mom, instead of there with my mom to catch her when she found out. When I found out I was shocked. I don't really remember saying or hearing anything for the first few minutes. My best friend lost her aunt to lung cancer a few years ago. The first thing I did was to take away my mom's smokes, and tell both her and my dad they needed to stop - that this was going to make her chances worse. She thought she had no chance; we all spent a few days just crying. Those first weeks were the most awful of my life. Speaking with survivors and reading the stories on this site have made a world of difference for me, and helped me to stay positive and share survivor stories with my mom.

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I live with my parents. I found out when my mom walked into the bathroom where I was taking a bath. She sat on the toilet and told me that the CT scans had shown suspicious spots on her and my dad. She had just gotten a call from their internist with the results. It was Mon., April 28th. My life changed that day forever.

Kristi

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  • 3 weeks later...

I flew to NJ, where my parents live, after my mom called to tell me that things weren't looking good with my Dad(April 2008). They had been out to visit us in IL about 3 weeks before and we knew something wasn't right. We suspected diabetes and a million other things, since he wasn't able to stay awake or walk well, and was very forgetful. We made my Dad walk around a museum for hours when he visited (and I couldn't ignore that he had to sit down on the floor and even fell asleep while waiting for us in some exhibits; and this is a man who normally stands, unless he's reading).

So, they did an emergency surgery for Superior Vena Cava and put a stent in. Apparently, he was lucky to be in the hospital when he was b/c the docs said that the reason for all the forgetfulness, tiredness, etc. was b/c of the intense lack of blood flow (therefore, oxygen flow), which could have resulted in massive heart failure in an instant.

So, after that, the docs still had to find what all the masses and shadows and things were elsewhere (they had already been looking at the pancreas and liver). After another 2 days, they concluded it was SCLC. Obviously, from the looking at other parts of the body, it was metastatic.

I can't say I was surprised. I always felt like that would be in his future. His mom died from lung cancer in 1976, when he was 27. He still kept smoking (and still is). I still hate that he has to go through this, and wish something or someone could have gotten through to him, so that maybe he could have avoided this experience. And, therefore it would have saved me from the same fate that he had...hearing that a parent has lung cancer.

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  • 3 weeks later...

My mom went to the dr because she had a cough that wouldn't go away and she couldn't catch her breath. There was a spot on her lung and some fluid. The guy was sorta clueless and just said "you may have lung cancer". She went to an oncologist that confirmed it. We all totally felt like a dear in the headlights.

This has all happened so fast (6 months ago she was diagnosed, since then she has lost her hair, been put on oxygen, etc). It is really sad how those horrible things become so "normal" in your life.

I am constantly on edge though wondering what is next.

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I'm not a 'family member/caregiver' but I can tell you how my husband found out. I had passed out while walking my dog and went to an ER because I gashed my forehead. They kept me for 3 days to find out why I'd passed out and gave me a million tests etc. All they found was 'pulmonary hypertension' and discharged me, advising me to see my cardiologist. They and I were sure it was a heart problem, esp since I'd had a massive heart attack in 2001. Well, I made an appt with a new cardiologist (my old one being out in the 'burbs and not convenient if I had to be hospitalized) for four wks later at a different hospital from where I'd been four wks before. After I told her what I just wrote here, she sent me for an immediate CT-scan. While I was getting dressed after the CT-scan, the radiologist apparently called her and told her I had a bunch of pulmonary embolisms and appeared to have lung cancer. She told him to have me wheeled to Admissions and she'd meet me there -- and then, before leaving her office, she called my husband to tell him I had pulmonary embolisms and most likely lung cancer -- and that he shouldn't leave town for the next few days at least. When I found out, I was LIVID -- she didn't know me from Adam, for all she knew my husband and I might have been estranged, she violated my privacy -- AND he was supposed to leave the next day for the annual meeting of his main professional organization, a meeting he hadn't missed in 40 years and at which he had a number of commitments. He dutifully canceled his trip as soon as he got off the phone, which I still feel terrible about. While I now like this cardiologist very much and am totally impressed with her diagnostic skills and involvement, I still think she did a very wrong thing and have told her so. She admitted that she panicked a bit, thinking I could drop dead any minute from the pulmonary embolisms. Anyway, that's how my poor husband learned I had lung cancer, even before I did.

Ellen

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My mom had been confused, tired....just not herself since Thanksgiving. Wrote it off to depression, as she had just lost both her parents within 5 months of each other, and we were all still grieving. My husband and I took the kids out of town for New Years, which is also my birthday. Mom didn't call to wish me happy birthday....first time in 39 years! Knew something was really wrong. Reached my Dad by phone, was told Mom was very weak and confused. Instructed him to take her to ER, thought she had had a stroke. In the meantime our car had been stolen, and we were stranded at the hotel 6 hours away. My bestfriend stayed all night in the ER with my Mom and Dad, texting me frequent updates. She called me at 6:00am...wanted to know if my husband was next to me....oh no, this can't be good.... large mass on right upper lung...5 lesions on brain.....Worst moment of my life, I broke into a million pieces. That was one week, four days ago...please pray for her. (and me)

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I found out about Dads LC diagnosis over the phone... again ( 6 months earlier he had been diagnosed with Prostate Cancer and had surgery to have it removed, this was 1 day before Christmas eve 2004) April 2005.. Dad cant seem to get rid of this "Pneumonia" that he has, so his GP sends him for a CT scan. The scan just happened to pick up part of the liver and there were numerous spots on his liver. So he gets sent for another one and it comes back as "liver almost completely filled with tumors"

So he has biopsy and it was confirmed as metastatic NSCLC stage 4. Started chemo at end of May. It seemed to take forever for everything to get going, but once he had diagnosis and we knew that chemo, I told him to get a port placed. So he had that done. Dad live for almost 3 yrs to the date of diagnosis. In the last month before he passed he for the first time had a regression of his tumors. they had never gotten bigger or had anymore shown up the whole time. Dad passed from the complications that chemo can bring. His heart gave out. Literally and figuratively. He was sick of being sick.

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  • 2 weeks later...

I haven't been on here in so long. With the web site upgrades, it's caused much confusion for me and my sign on attempts....

But I digress, here I am.

My mom was diagnosed with pneumonia & bronchitis. when antibiotics weren't working she demanded a chest x-ray. The technician told her to NOT return to work that day but to call her doctor and be seen immediately for results. After many tests (as noted in my profile), and after being told that it did NOT look like cancer, she finally went to ONE appointment alone. That was the appointment they told her that the broncoscopy had come back positive for cancer cells. She drove from that appointment straight to my house. When she walked in she was crying. We sat on my couch and hugged. To this day, 20 months later, I regret not going with her to that appointment. I now go to every appointment I can or I make sure her sisters (my aunts) are there with her.

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