My doctor has kind of shyed away from telling me exactly what my stage is

MyLungCancer
MyLungCancer Member Posts: 72
edited June 2020 in General Cancer
He has asked me to not concentrate on a number and said it really doesn't make any difference what it is anyway, they are going to treat me with the most aggressive, the best combination of drugs and procedures that are available. So, I bought into that thinking, but still, there's this little mouse nibbling on me telling me to find out.

Do you care what your stage is? Did your doctor tell you to begin with? Does it really make any difference?

Comments

  • LiveWithCancer
    LiveWithCancer Member Posts: 470
    edited June 2020
    I didn't ask my stage, but my husband did.

    It doesn't really make a difference, I don't think. I like your doctor's response and his attitude ... but I do like knowing the stage ... I don't know why I like knowing it, I just do. It doesn't really matter - like your doctor says - but when you hear other people talk about the stage their cancer is, it is kind of nice (that's probably a bad word choice) to know how yours compares ... if that makes any sense at all. (I'm going to guess that since he doesn't want to tell you, yours may be later stage and maybe he is worried it will make you worry too much to know? I am not a worrier so knowing just gives me a more complete picture...)

    You can probably come up with a pretty good guess based on location of your tumor(s) and the drugs you're being treated with. https://www.cancer.org/cancer/lung-cancer/detection-diagnosis-staging/staging-nsclc.html might help if yours is NSCLC. They classify SCLC differently.
  • JaneA
    JaneA Member Posts: 335
    edited June 2020
    I believe that most patients would prefer knowing exactly what they are facing. I definitely would. In fact, having access to your medical records is a legal right.

    Patients and their caregivers need to be able to make realistic plans for the future. How can we do that if we don't know the truth?

    This is my opinion. I was Stage IV at diagnosis - my hubby and I got both of our wills and power of attorney done and hunkered down. That was five years ago, and I'm still here.
  • Bug
    Bug Member Posts: 394
    edited June 2020
    As LWC said, maybe your doctor doesn't want you to worry. And he has probably seen cases where something that originally looked dire had a good outcome and something that originally looked not very bad had a poor outcome. He should tell you if you want to know. It's your right to know. You can probably also find it in the myriad of paperwork that you get with a cancer diagnosis. Personally, I wanted to know.
  • Teachertina
    Teachertina Member Posts: 205
    edited June 2020
    I was stage 4 with RCC 14 years ago, still here! I like knowing that! You should be able to know your stage at all times. Right now I’m NED, I like knowing that too!
  • GregP_WN
    GregP_WN Member Posts: 742
    edited June 2020
    None of my doctors have volunteered that information about my diagnosis for any of the 5 that I've had. I had to ask. I will say that after I found out that I was stage IIIB for my 3rd diagnosis, I had the idea that my condition was much worse than I thought it was before I knew the stage. With my latest relapse I haven't asked, but from reading my scan reports and the descriptions used it is referred to as "metastatic disease" which is typically stage IV. Although, I have not seen or been told that my cancer has metastasized to "other organs". Other than lymph nodes, I believe that's it. My last scan did mention a "mass" on my right lung that needed further investigation. I believe it is from where I got my trach and wasn't told I needed to be squirting saline in it every day and I developed a terrible cough, with a lot of pain when I would cough. It went away after I started the saline regularly. But, I have to say, that description of "mass" is concerning. I will find out more about that this Tuesday.
  • Paperpusher
    Paperpusher Member Posts: 78
    edited June 2020
    We had to keep asking hubby's doctor about his stage. He hospital had given us a booklet with staging info which I was reading. We didn't know until his onc broke down and told us that small cell lung cancer is staged differently than non small cell. We were happy to hear that it was limited even though his onc told us it was very serious because of size and location. He was due for his 5 year PET scan in March but Covid hit. Now his onc wants him to go before his appt on 07/10 but hubby is afraid to since it's in the hospital.

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