• Do the doctors ever say, just stop?

    Asked by matty on Monday, March 25, 2013

    Do the doctors ever say, just stop?

    Brother in law was just informed that brain tumor(s) is/are back; to the original medulloblastoma site and another in the pituitary. Back after just over 2 months. Back and inoperable. He just got done with his first 4 days of chemo last week. Has balance/gate issues (walks with walker or uses wheelchair) deaf in one ear, double vision and constant fatigue. The doctors said today that the plan of treatment will continue as planned. off for the next three weeks, then another 4 days of chemo then to do proton radiation for 30 days to entire brain and spine - then several more sessions of chemo. With this being such an aggressive cancer and being inoperable - is there really a chance that chemo and radiation alone will stem the tide? At what point to say the torture is enough?

    12 Answers from the Community

    12 answers
    • nancyjac's Avatar
      nancyjac

      The doctors don't decide when to stop, the patient does. Many people live with metastatic cancer as a chronic disease and have for years.

      over 4 years ago
    • hogfan03's Avatar
      hogfan03

      I agree with nancyjac, the patient decides. My grandmother fought lung cancer twice and was told she had three months to live. The last battle the cancer spread to her brain, the doctors said it was inoperable and started her on chemo. She them decided she was tired, had lived a good life and wanted to use the remaining time she had left at home. I think it was a harder decision for me and the rest of the family but she knew it was her time and told the doctors no more and they respected her wishes, especially watching her battle cancer before.

      over 4 years ago
    • carm's Avatar
      carm

      Matty,
      With respect, I disagree with some of the other postings: Medulloblastoma (MDL) is not a metastatic cancer. It is a malignant tumor and not a malignant cancer. It is a primary and does not have the ability to metastasize outside of the brain as is for most if not all malignant tumors, which makes them behave differently than cancers as well as the behaviors of the patients are different with cancers and tumors. That being said, I am sure you must know that MDL is mostly a pediatric disease and only about 20% of adults have it. It usually always recurs but it is controllable and responsive to chemotherapy and radiation. The risk of course is the blocking of a ventricle that could cause hydrocephalus, and the problems he has with vision and gait are what is expected with this type of tumor. I am an oncology nurse and I think the normal chemotherapy regimen is CCNU, although I would have to check that. However, recurrence can be controlled with chemo and radiation and sometimes a second surgery can be done. What determines that is any involvement the regrowth may have with critical nerves or vascular structures. What I do agree on normally for any patient is that they have the right to determine whether they would like to continue with therapy or not, but brain tumors (not all) tend to affect cognitive reasoning and so that would be up to his POA to make that decision. It is normal to radiate the spine because if a ventricle is effected, malignant cells may break off into the CSF and become an issue. Best of luck to you and your family, Carm RN.

      over 4 years ago
    • matty's Avatar
      matty

      I appreciate all the answers so far, as any input is helpful to gain perspective. There are already signs that it is in his CSF. And he has had 2 shunts placed thus far (first failed after 2 days) and had already experienced one seizure. He has already voiced his wish to not endure any further craniotomy surgery.

      over 4 years ago
    • SueRae1's Avatar
      SueRae1

      I have been living with stage IV kidney cancer being treated as a chronic illness since Aug 2009, and have been in aggressive treatment for Metastasized TNBC since May of last year. I am doing well, and my cancers, which are a total of 4 small lesions in my liver, has not spread.
      That said....

      Hugs and prayers to all of you. I am so sorry that you have go through this. There are so many factors that need to be taken into consideration when making a decision to switch to palliative/hospice care. Your BIL quality of life, prognosis, his wishes, what exactly the oncologist hopes to accomplish with this treatment plan.

      You may want to get a 2nd opinion to help clarify the issues and answers. Yes there are doctors out there whose unspoken motto is "treat at any cost", but most offer treatment they believe will extend life with acceptable impact on its quality. You may also want to speak with a social worker at the hospital/center where your BIL is being treated. She/he can point you to resources that can help your BIL and entire family make an informed choice.

      over 4 years ago
    • carm's Avatar
      carm

      Matty,
      Oh my well if it there are shunts in place then he does have ventricle involvement and the shunts prevent the hydrocephalus. If he desires not to continue then you with a surgery, he is well within his right. Seizure activity is normal with brain tumors and will increase. I can assume that he is probably on a steroid as well. I will send you my email address in case you have questions sensitive to his condition that you might not want to post on an open forum. Brain tumors are the "Mother of all Malignancies." Any oncology nurse/end of life nurse will tell you that. Best of luck, Carm.

      over 4 years ago
    • matty's Avatar
      matty

      Being that this is suck a rare form in adults, we are lucky in that there are a lot of doctors on board that are very active in consulting each other and others outside the case. So much so, that I do believe that in some respects they are treating the disease more than the person at times. We have a major consult in a few hours, I will report back after.

      over 4 years ago
    • Clyde's Avatar
      Clyde

      My best wishes for you to come through this. As others have said, its your father's decision. Doctors will assume the patient wants to do treatment if only because the patient came in to see what can be done.

      over 4 years ago
    • leepenn's Avatar
      leepenn

      i actually think this is a great question for the docs.... and for your brother in law.... it's such a tough thing to talk about. best of luck.

      over 4 years ago
    • gwendolyn's Avatar
      gwendolyn

      I hope your family got the answers you were seeking at the consult. I'm sorry your brother in law has to deal with this. The questions you are asking suggest you really want what's in his best interests.

      over 4 years ago
    • cancermom66's Avatar
      cancermom66

      My son was diagnosed with Medulloblastoma at age 7 He underwent tumor removal, chemo, radiation and stem cell transplant. It was the longest toughest year of our lives. While he suffers from long term damage from the treatments, he is alive and still beating it. We met many who battled the same type of brain tumor( even one adult) and most were told if it came back, it usually comes back with a vengence and usually requires tougher action or in a lot of cases, everything had already been done and it was then a matter of quality of life left and keeping them comfortable. i know there are some experimental treatments out there specifically for Recurring Medulloblastoma. One in New York and another being done at St. Judes Childrens Hospital with some success.Brain cancer is a tough one but I have seen some who have beat it more than once and continue to survive.

      over 4 years ago
    • shhwee's Avatar
      shhwee

      I was diagnosed with stage 4, inoperable Medulloblastoma in 2011. I was told by my hospital that there was nothing they could do; to get my affairs in order. My father sought out a second opinion at MD Anderson in Houston, Texas. The right side of my face was completely paralyzed, I was completely deaf in my right ear, and I was wheelchair bound for months. Being a dancer, this was heartbreaking.

      There I received Proton Therapy, and chemotherapy that saved my young life in just nine sort months. Now I have hearing that is so well I can hear my watch ticking in a box across the room. I have regained full movement in my face, and stand on my own two feet (unassisted) in my waitress job for up to eight hours a day.
      I have an AV Shunt in my head, a slight corneal scar, and a STUNNING scar on my neck from surgery.

      Chemo and radiation can 'stem the tide' and in most cases can obliterate cancer. However, they ALONE will never work. Your brother in law is a WARRIOR!! In my own personal experience I have found that a patient MUST exhibit an intense fighting spirit and continuous resilience. Much like ancient warriors of Greece or even modern day soldiers.

      "God will never give me more than I can handle."

      almost 4 years ago

    Help the community by answering this question:

    Create an account to post your answer Already have an account? Sign in!

    By using WhatNext, you agree to our User Agreement, and Privacy Policy


    Read and answer more medulloblastoma questions.  Also, don't forget to check out our Medulloblastoma page.