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Post Treatment Care

dlp_lost
Posts: 4
Joined: Feb 2010

On Tuesday of this week I was told by my Dentist that I needed a tooth extracted. According to my Oncologist if I were to be put in the position to having a tooth extracted I need to have him arrange for a specialist to do this because I have undergone Chemo and Radiation treatment. I reminded my Dentist that I needed to do this and when I got home I called my Oncologist's office to make arrangements. I also asked to speak to him. Well, of course he was much to busy to speak to me at that time, but of course the information would be relayed to him and they would be in touch with me. It was the next day when I got a return call from his office and was told I needed to call a dental care office some 120 miles from where I live to make arrangements, or have my Dentist call them. Well, I am relatively certain that they would have had to contact my Dentist if I had called, so I had my dentist call them. However, during this short non-personal conversation with my Oncologist's receptionist/secretary I was told he didn't call me back himself because he was 'so busy' this week having been on vacation last week. What?? I think I would have lied rather than told a cancer patient the reason his/her physician couldn't take the time to speak to them on the phone was they had been on vacation. When I said I had a problem getting to Roanoke, some 120 miles from where I live, she responded "A lot of our patients have social issues". I didn't realize my possible inability to get to the office they wanted me referred to was a 'social issue', but I am certainly glad to know that now. My problem with all this is: April will be the 6th anniversary of my being under this particular Oncologist's care. In that time I have called and asked questions, for example, after 5 weeks of radiation treatment to my throat I finally called and asked if I could get something for pain. I was hurting so bad I could not stand it anymore. The first words out of this same receptionist/secretary's mouth was "What are you taking now?" My response, "Nothing". So much for keeping up with what is going on. But other than that, In all this time I have only called and asked to speak to him directly or have him call me back 4 times. And do you know how many times I have spoken to him on the phone in 6 years in my so outrageously numerous requests? None. Approximately a year ago I had a PT Scan. When I got home sometime in the afternoon I was washing dishes and noticed that the tips of 2 of my fingers on my right hand were sensitive to the dish water. I looked and literally had a blister on one finger and the other was red, as if i had burned them on something. I searched my memory for a day and concluded I had not burned them. Two days later I called to ask if the PT Scan could have caused this; but my mistake was asking to speak to my physician. I waited til the end of the work day to call so I would not be interrupting his busy schedule. The same receptionist/secretary spoke to me. There was not a chance I was going to talk to the oncologist. She was so emphatic and rude that I wasn't about to discuss my query with her.
My issue is this: This supposedly caring/giving medical office and oncologist cannot make 2 minutes in his day to reassure a patient everything is ok or that the information they have given one is the best, or, that a procedure they recommend is the best route to take cannot possibly be giving their patients the best care possible. Is as though they have become 'omnipotent' and to doubt or have fear as their patient is insane. Obviously they don't care enough to be overly concerned. Six years later I have had no vacation, I thank God I am alive, and wonder at the lack of humanity shown by my medical support. I wonder at the lack of compassion, and really the lack of intelligence. Can any of you understand my feelings? Am I stupid? Are they? One other important thing as a post to the call made by me approximately a year ago about the 'burnt fingers'. The next day the blister and sensitivity were gone; and approximately 1 and 1/2 months later I had an appointment with this oncologist. At that time I asked if the PT Scan may have caused the burned feeling and blister and was told perhaps it had. I was also told I wouldn't be getting anymore PT Scans because "the harm caused outways the benefits" and in 2 years I might be sent to get a CT Scan. I also realized that he had not even been told I had called. I think my faith in this office is gone. That fear of what is to come is always in the back of one's mind when one goes through the ordeal that so many of us have gone through; and to have the one's we have relyed on so faithfully to show such a lack of compassion and concern, well for me anyway, really does scare the heck out of me; but more importantly this lack of concern and compassion disheartens me to the point of asking, "Who cares?", "Is it the almighty Buck that determines this aparrently 'phoney' concern I was shown when I stood alone, walked alone, so close to Death's door? Or does this Ocologist and his office need a good swift kick in the ass to get their hearts started again?

CarrWilson's picture
CarrWilson
Posts: 112
Joined: Feb 2010

When I get very poor service I complain. And I complain to the right person. The little girly fluff that answers the phone is not the right person. If your MD belongs to a large clinic call, and ask to speak to the quality assurance person. (There may be several different names, but tell the operator you want to officially lodge a complaint). They will listen to what has happened and will (hopefully) speak to all parties involved, to help prevent this from happening again.

Many MD's are reimbursed with bonuses by how satisfied their patients are, You might have a heart to heart with your MD

I have just started my care 12/2009 and have had to do this three different times with three different health care organizations. It is so frustrating to have to be going thru cancer treatment, beg for appointments, beg to have someone look at your results, have your slides lost, and have your insurance deny your claims. All times I have gone up the ladder, I have calmed down and feel better that this may not happen to someone else.

I am so sorry you have to go through this. Best of Luck.

dlp_lost
Posts: 4
Joined: Feb 2010

Thank you for your insight. Good luck with your care. The Best to you.

CherylMike
Posts: 118
Joined: Oct 2009

My husband fought head and neck cancer for over 2 years. We dealt with many different doctors during this period. Fortunately, we had doctors that cared about us. (When my husband passed, I received handwritten condolences from some of these doctors). My husband's onocologist had a PA working with him. The PA would often be the one to call me back (sometimes late at night, but SOMEONE always got back to us). I once dealt with a receptionist that did not follow up. I just kept calling back, asking my questions and letting her know that I needed an answer. Sometimes, the sqeaky wheel really does get greased. You should not have to worry about whether you will receive an answer to your questions. A good doctor will make sure that he or someone that works for him will get back to you that day. If you have told him that his receptionist is rude and not responding to your requests for help, and he does nothing, I would search for a different doctor. My husband also had a tooth go bad. Because of the radiation, he was sent to a specialist (recommmended by our dentist), who in turned worked with our regular dentist to come up with a treatment. Throughout my husband's illness, pain control was a key aspect of his treatment. (We eventually ended up going to a "pain doctor" who installed an under the skin pain pump). I can not believe a good doctor would not know that you would require pain meds when going through radiation to the neck area (it was so painful that my husband could not swallow and needed a stomach tube, which was placed before the radiation so that it could heal completely before radiation). I would not worry about waiting until end of day to call the doctors office. I would call when you need to. Follow up, if you have not received a response. I guess that I am probably a "pushy" person, but do know that a couple of times, I was told to go immediately to the ER and my husband was hospitalized. I had never been through something like this and did not know when things were "really bad" versus they can wait for the next appointment. The doctors always called and helped. I hope that I was not "lucky" in my husbands care, but rather that you are "unlucky" to have the doctor that you have. I would hope that most physicians that go into this field are more compassionate than that. (I even had Heads of Departments/Chairs of Departments at Mayo and MD Anderson give us their cell phone numbers). ~Cheryl

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

I have had cancer. And I have also seen about 25 physicians. Most were good but I have crossed 4 off my list. I will not put up with production line medicine and a doctor that does not take time to read my medical file. So I would be looking for another Oncologist in your case. I am dealing with dental issues myself. A few weeks ago I had celulitis develope in my face after an infected tooth got out of control. As my nerves in my face are damaged this simple problem turned into a life threatening infection. And like you I ended up 130 miles away at a specialist who drained my face. I asked about having my teeth removed and no one will touch me. Even the specialist is afraid of breaking the bone in my face. So be very careful and ask lots of questions. It seems we have to look out for ourselves more and more as the medical system is overloaded. Best wishes Slickwilly

dlp_lost
Posts: 4
Joined: Feb 2010

Sorry couldn't help myself. Hope you laughed. I was very satisfied with the Oncologist and his office at first; but they have become very impersonal and I think you put it correctly--production line medicine. I did ask if my normal Dentist would consider getting information on procedure for my extraction and doing it himself, and I got an emphatic "NO". And I understand that he cannot risk that. I really am amazed at your ability to withstand all you have gone through. In that respect, I have been fortunate thus far. But I am not getting any younger and I wonder what the future will bring. I don't like to be a burden to anyone, so I do all I can until I have no choice but to ask for help. All I wanted from my Oncologist's Office was a little compassion and really got the brush off. I laugh when I think how the 'receptionist/secretary' referred to my possible inability to get to an appointment 120 miles away as a "social issue". How tright and inappropriate. Thank you so much for the thumbs up..Denny

dlp_lost
Posts: 4
Joined: Feb 2010

Thank you for your insight. I am very sorry for the pain and loss you have suffered. Yes, others tell me "find another Oncologist". So I guess that's what I'll do. But in the meantime I am also waiting to hear about my appointment to have the tooth extracted. I am sure I will hear something Monday (tomorrow). A friend recommended and Oncologist he knows and says is the best in this state and the next five. I think I am kind of tired going it alone, nervous about how I will get to the Dental Office 120 miles away, and need some compassion and empathy. Cheryl, thank you for yours. Denny

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