Uncaring Oncologist

stanbridge
stanbridge Member Posts: 6
in Caregivers #1

My husband was diagnosed with small intestine cancer in February 2015. The first oncologist we went to was a major teaching hospital on the west coast, one of the top cancer centers in the USA, and the oncologist we were to meet with one of the top in the field (according to his bio on the institution's web site).  He kept us waiting over two hours in the late afternoon (we live 3 hours from the center, and had not made arrangements to stay overnight).  When he finally came into the exam room, he was brusque and impatient with our questions, told us he couldn't cure my husband but could try to control it, then rushed out.  We were appalled at the long wait and the attitude, so decided to go elsewhere for treatment.  Long story short, we have now ended up back with this oncologist because my husband had to go to this hospital for a hip replacement, as the cancer had moved to his hip.  The orthopedic oncologist (who we were really impressed by) encouraged us to move all our cancer care back to this hospital, so we decided to give this doctor another chance.

Bad idea, and now it is too late to do anything about it.  As I write this, my husband is in the bedroom next door, recovering from being in the hospital for two weeks for a bowel obstruction and a pulmonary embolism--he came home Monday.  The whole two weeks he was there, we never saw the oncologist.  The residents were leaving him messages and he never returned them.  He actually stopped by the room once because he had a seminar in the building that day, and had the nerve to tell us that his fellows had been visiting my husband every day, which was not true because I was there as well.  I asked what was next, if my husband could resume chemo, and the doctor said he wasn't sure and he would have his assistant make us an appointment to see him.  When I heard from the doctor's office, the appointment was scheduled for two days after his discharge from the hospital.  My husband was so exhausted from the hospital, that he refused to get up for that appointment.  I don't blame him--a 6 hour roundtrip car drive is the last thing he needed after what he has been through!  I called the doctor's office, and they said they would talk to the doctor about rescheduling.  Today is late Saturday, and I haven't heard a word.

Ever since we returned to this doctor, we knew it was a mistake, but events are spiraling out of control.  Two weeks after the hip replacement, he has the obstruction.  He's about to be discharged to go home, when he gets a massive pulmonary embolism.  The hospital oncology team never talked to us, no appointments with the doctor are in the future, just a chemo appointment that I don't think my husband will be able to handle. Two days after he got home, he began having symptoms of obstruction again, only without the pain.  He wants the chemo so badly, that he will not let me call the hospital (no point in calling the doctor) to find out what to do.  Today he has become incontinent, can barely eat or drink, and is not thinking clearly at all.  I told him I would take him to the local community hospital tomorrow if there was no improvement.  I think my husband only has a short time left, and the oncologist has abandoned him.

Has anyone ever had such troubles with an oncologist?  I am really shocked, because cancer hospitals always brag about how wonderul their support is.  At this point it is not about medical miracles, just care and support.  

Comments

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #2
    Uncaring oncologist

    I am so sorry to hear about your husband.  Request another oncologist asap and report this one.  When my husband was first diagnosed, he already had an oncologist for a rare blood condition.  We really didn't think to get a second opinion and radiation and chemo was done first.  We were told he was clear after this treatment.  He wasn't and our ENT referred us to a head and neck specialist who was outstanding at a cancer hospital.  He did surgery and everything was great for a year when it was discovered my husband had a second primary and surgery was ruled out due to the fact, I think, of the previous radiation and surgery because it was basically in the same spot.  We stayed with our specialist and my husband underwent a second round of radiation (with great fear of his cartoid artery bursting since the radiation was basically in the same spot) and chemo.  This oncologist was supposed to be excellent.  His bedside manner left a lot to be desired, long waits in and out of the waiting room and then he was in and out in a short period of time.  The only reason we stayed with him was that the second round of radiation was being done in the same center.  When the 2nd primary returned and spread to his lung, this oncologist told us that since he wasn't having any problems he wouldn't do anything.  No problems, only cancer in his lung and a larger tumor in the cervical of his esophagus.  By then my husband said no more he had had enough.  He was still seeing the first oncologist because of the rare blood condition and when we saw him and told him what this onologist said he couldn't believe what the other oncologist said but he did agree with my husband just like our specialist about no further treatment because it wouldn't cure and could possibly hasten his time.   I am thankful that my husband did well for another 2 years then went downhill fast and without much pain.  He was on in-home hospice for almost 2 years and they were great.

    Get your husband back to the cancer hospital and demand a new oncologist and demand to know if treatment will help or not.  I would definitely file a report on this supposed great oncologist with the hospital and AMA about the way your husband has been treated by this oncologist.  You know some doctors are great and others shouldn't even be in the field, just like anything else, some are excellent and some are horrible.

    Wishing you both peace and comfort

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    #3
    Uncaring vs Caregiving

    As you've been finding out, sometimes it's frustrating and exhausting to be a caregiver.  Getting caregivers on your teams (your team that includes your husband and you, your team that includes you) who are indeed caring can make all the difference. A six hour commute for care is crazymaking.  Hopefully you can find additional resources that are closer. 

    Does your medical group or insurance plan have a case manager who might help you get the care and the answers? That's worth a call.  They can help sort out what's going on (or not) with your husband and can point you in the direction for support as a caregiver.  So can the hospital.  They have case managers as well as patient and family advocates, discharge planners, social workers, and spiritual care providers who can all assist.  I'd start with the case managers for your medical group and the hospital.  Administration can also be helpful in navigating these waters.   Information, communication, respect, and support are part of the care process.  I hope you're able to get some answers and make some progress.

    Hugs to you and yours....

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