• Opting for no treatment

    Asked by Carlina on Tuesday, November 20, 2018

    Opting for no treatment

    What are the implications for doing no treatment for metastatic cancer of unknown origin

    17 Answers from the Community

    17 answers
    • LiveWithCancer's Avatar
      LiveWithCancer

      Short and simple? Death. Sooner rather than later.

      29 days ago
    • GregP_WN's Avatar
      GregP_WN

      Here is an article Ms. @JaneA wrote for our blog on just this subject. Deciding to treat or not treat, here is the link to the article. https://www.whatnext.com/blog/posts/are-you-sure-you-want-to-take-your-chances-without-treatment

      29 days ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      Hi Carlin’s. Went to your home page and read your experiences. Thank you so much for sharing your journey so far. So, you have had surgery and some frontline chemo and your tumor on last CT scan has become smaller. Your feeling good overall and have joined a swim class. Doctor wants you to go on maintenance Optivo, and a second opinion from the same medical group concurs. Before making a firm decision on your medical care going forward, I suggest you get a third opinion from a doctor not in your same medical group. I recommend an onchologist at a good teaching hospital. I am sure there are some good ones in Florida. Today, with many types of cancers ,the thinking is some kind of maintenance therapy after frontline chemo. Optivo is usually used with lung cancer . I traveled hours for my treatments at a teaching hospital because they keep up to date on the latest advancements on cancer treatments and had the type of onchologist I needed to treat me. Without my frontline chemo I would not be here today. When or if I have a recurrence I would not hesitate to have chemo again despite the side effects. I am though hopeful that sooner rather than later they come up with treatments to eventually shelve the chemo. Also, my hair was white and curly when it first grew back bit has settled down to gray now ( I am 72 after all). Ultimately whatever you decide it is your choic, just make sure you explore all avenues before you decide. Your still a youngster, with a lot of living to do.

      29 days ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      Sorry Carlina about misspelling your screen name. I forgot that spell check is always watching and apparently has an issue with Carlina. Lol

      29 days ago
    • BoiseB's Avatar
      BoiseB

      I also read your profile and journey. I noticed you mentioned that your daughter doesn't support Optivo. I wish to emphaze that decision is up to you. She is probably well meaning but the decision is up to you. Since your insurance will pay for up to a year of immunology why not go for it?

      29 days ago
    • po18guy's Avatar
      po18guy

      A little more information, please. Is there some overriding reason to avoid treatment? For perspective, if you are worried about treatment, I have just started my 20th drug. 11 different regimens and 4 clinical trials. 5 salvage regimens. Total body irradiation. Essentially killed for a stem cell transplant. Chemotherapy does not scare me - it saves me. And, listen to your medical team regarding treatment, which can be intended either to cure you or to extend your life if cure is not achievable. Your life, your decision.

      But, consider this: do you love anyone? Does anyone love you? Are you willing to offer yourself for the benefit of others? If so, then life s both worth living as well as worth fighting for. Why so much worry about a disease when life itself is terminal by design?

      We are given but one day at a time to enjoy life, to express our love. Shrink your view down to the right here and right now. Tomorrow cannot be a problem until and unless you wake up tomorrow.

      I say, live and love today.

      28 days ago
    • JaneA's Avatar
      JaneA

      As for me, I won't go down without a fight. Have you had a second and third opinion? If they can find out where the primary cancer is, they can suggest an effective treatment. As for me, I won't go down without a fight.

      28 days ago
    • BoiseB's Avatar
      BoiseB

      One thing to consider is you can always opt out of treatment. It is much more difficult to opt in to treatment

      28 days ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I haven't read your journey yet, but have read the comments here. I saw somebody say that your daughter objects to Opdivo.

      I have been on Opdivo for 5 years and it is the reason i am still here. It has been a miracle drug for me and many like me. It had not only kept me alive, the side effects for me have been minimal.

      Best of luck, whatever you decide.

      28 days ago
    • GregP_WN's Avatar
      GregP_WN

      I know that family often make decisions for loved ones about what type of and how much treatment they get, but I question a family member making decisions about a new drug that apparently they don't know enough about to be making an educated decision, as is in this case.

      28 days ago
    • kalindria's Avatar
      kalindria

      I was stage IV at diagnosis and have had two recurrences already. I know that I want to live as long as possible so every time my oncologist offers me maintenance chemo or a clinical trial, I say yes. I'm willing to try nearly anything. I can always change my mind later or opt out if it's too painful/difficult to continue. But the converse isn't always the case. Just my perspective.

      I do hope you'll update us on your decision. Hugs and love!

      27 days ago
    • BoiseB's Avatar
      BoiseB

      I am lucky to have two family members who are actually medical professionals. My brother is a nurse practitioner and my nephew is a PCP, they are the only family members who can see my medical records. I listen to their advice but I make my own decision.

      27 days ago
    • Ksantema's Avatar
      Ksantema

      My wife was mad at me for even considering not having treatment. She wants to make sure I am around as long as I can be. With how widespread my cancer had spread into my bones and lungs my prognosis without treatment was very poor. But I do feel each persons situation is different and for some people I know no treatment has been the course they have chosen.

      27 days ago
    • c1a1c1's Avatar
      c1a1c1

      25 years ago a friend had Stage IV colon cancer, had a couple of surgeries, and came close to a colostomy. Then dr. suggested chemo. She said no. I suggested she at least try it and if it was awful, she could quit at any time. It had never occurred to her she could stop - her choice! She finished chemo and she's now 88 and going strong. You just never know.

      25 days ago
    • Carlina's Avatar
      Carlina

      Wow, so many experiences! That is why I love this support group. Reading about treatments from a personal view instead of clinical . You are all great!
      Now, I have some good news.
      I had a CT scan day before Thanksgiving. The tumors in my lymph nodes around my stomach are gone!
      My oncologist said it was amazing! He is still keeping an eye on me, with check ups and another CT in February.
      I will definitely look at my options for treatment of it is needed. It's good to know there are many survivors to turn to! Thank you!

      23 days ago
    • Carlina's Avatar
      Carlina

      The reason I asked was, how effective are treatments in the long run?
      Having cancer of unknown origin , unknown prognosis, unknown everything, is hard for me to cope with. So, by not having treatment, what gives? Another same answer....no one knows.
      I know there are many days where I don't use my faith, and flounder.
      It is so true that we need to "Let go and let God". That is where my journey has hope. Going through it all is so personal.
      Does it sound like I had given up? No. Just so frustrated.

      23 days ago
    • BarbarainBham's Avatar
      BarbarainBham

      If you have a change in February, my best advice is to do what your doctor recommends. You never told us why your daughter doesn't want you to do Optivo, or why you are considering not having the treatments.

      I knew someone with an unknown primary, and she had brain surgery in 2013 and has had no recurrence. She was very worried at first, but her doctor told her to enjoy her life while monitoring with scans to be sure it hasn't recurred.

      Best wishes.

      about 20 hours ago

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