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amber44
Posts: 3
Joined: Jul 2007

I wrote a message in here awhile ago, and you were all so kind to reply with such support, and concern. Now, I am writing about another issue that has happened to me lately. It may seem unreal, and if it did not happen to me, I might doubt it too. Last April, I was diagnosed with lung cancer. I had a third of my lung removed, as well as the lymph nodes in that area. I had a very slow, and painful recovery. A couple of months ago I approached the doctors with concerns about my pain level, and I just felt really bad. They did not listen, and gave me an apointment that was a month away. In the meantime, I got really bad and ended up in the intensive care unit with obstructive airway pneumonia. The doctors, and there were more than one, told me, and my family that the cancer had returned, and there were three tumors. One of them next to my heart. And that is what caused me to be sick. They said I had at the most, a year to live. The crazy part, well, I saw an oncologist for follow up, and he said there is not any true basis for them to have said the cancer returned. He said in his opinion, the cancer did not return. That he does not know why they told me, and my family that I was dying. I had no reason to disbelieve what the doctors told me. I have spent a month and a half believing that I am dying. I cannot believe the doctors would tell me that without being correct, or knowing what they were talking about. It's like one of the worst things to tell a patient that they are dying, and they are not. Or that the cancer was back when it was not. They even showed my parents the xray film pointing out where the tumors were. Or rather were they assumed they were. Am I glad the cancer is most likely not back, of course. But the pain and agony that I have gone through is unspeakable. And for my 15 year old son. And the rest of my family. How can I trust the medical profession again. This feels like a really bad sci fi movie..If it was just me, I would doubt my sanilty, but my family was told this too. And witnessed conversations between the doctors and myself. How do I get the trust back that I need to have. I was able to get a second opinion from a totally different doctor. He wants to do more tests and scans before he gives me a definite answer. But he did say if it returned, it as small. And the doctors telling me I would die in a year was premature, and should not have been done. My poor dad has been through so much. When he heard what the last doctor said, he was amazed, happy, then cried because of the stress of believing his only daughter had a year to live. I know this sounds crazy. As I started this post off with. It feels to me at times that it is not real. Maybe in time, I'll view it better. The journey is not over yet. I still need scans, and tests, and so forth. I need a competent doctor to determine whether the cancer is back. How I can get my trust in the medical profession I do not know. And I think, how could they do this to me. What an awful thing. I hope someone believes me, as I already feel like I'm on another planet. Help? Anyone lose faith in our great medical profession? I would love to hear your experiences.. And thank you for reading this.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

It happened to me, amber. I am a head and neck cancer survivor, surg in oct of 2005. Last year, in June, my wife and I asked docs why I had not been getting CAT or PET scans during routine checkups. So they ordered them :). They came back with an explosion of stuff in my lungs and even a hot spot in my mouth.

I was advised I had 'a minimum of 10 months to live' and 2 years would be a good deal. My wife, my daughter, and my son-in-law were in the room when I got the news.

You, of all people, can understand what went down, phone calls, plane trips, emails, long drives, soccer team reunions even, in my case, the whole nine yards. And I was not exactly happy to be involved with any of that, of course.

Ultimately, I had some infection issues in my face and neck area, and so was given an antibiotic for that. (By the way, it was my oncologist who gave me the 10 month prognosis, while my original surgeon, when he heard that, was absolutely ticked, although he agreed with it).

Anyway, when they did the 'confirming' CAT and PET scans, the 'cancer' was gone. In addition, a trip to the dentist and removal of an infected tooth removed the hot spot in my mouth. I was pronounced NED (no evidence of disease).

By the same guy who said I had a minimum of 10 months to live.

Later, recently, regrettably, they have decided there is still a spot on the lung that needs to be removed, and you know what? I am all for that.

As I have said to others, cancer, and the human body, they are not so easy as an automobile. They are enigmas.

I am confident in my doctors. They are doing the best that they can. I believe that. If I did not, I would leave them and find new doctors. I believe them, and I believe in them.

So now we are going to cut out a bit of my lung, and I am hopeful that this will be the end of my cancer story.

It won't be, I know. As a survivor who talks to other survivors, I know that the story never ends. We do with it the best that we can, and we have to put our faith in others, doctors and nurses and loved ones and friends, and hope that they are all there for us. In my case, none of them have let me down, I don't think.

I hope that your story has a great ending, amber, and I hope that you can find doctors that you trust, or that you can find the trust you once had in your current doctors.

Know that others are out there, and we think of you, and we care for you, and we wish you the best.

Take care.

TereB
Posts: 288
Joined: May 2003

Hi Amber,

Even if you think your story sounds unbelievable, it has actually happened to some of us. I know several people who were told they had a short time to live and they all proved the doctor wrong. I wish it didn't happen to anyone.

First doc I saw said symptons were in my imagination. ENT/surgeon I saw later told me I was lucky he was my doctor because few doctors knew about my type of tumor which is rare. When I saw this ENT the first time, I think diagnosis was easy since the tumor had broken through my eardrum and was easily seen. He brought all kinds of doctors during my appointments to look at the tumor. After surgery, I went for follow-ups but he never ordered a scan, MRI, not even a blood test. Instead, there was always another doctor, a resident, or whatever and the ENT told him about the great surgery he had performed. I went from being a patient to being just an interesting tumor that he could show off to other doctors. A year after surgery I started having pain in my head and with time the pain increased. I saw this ENT many times and he never ordered a test or showed any interest in finding out the cause of the pain. I was in extreme pain for an entire year and my instincts said it had to do with the tumor that was taken out. Unfortunately at the time (1988) there was little information about that type of tumor. The last time I saw the ENT he looked into my eyes and said he was the doctor, he knew about these things and he could tell I had no tumor in my head, that he had taken the whole thing out. That the pain was caused by stress from getting my kids ready for school. I knew I was not a doctor but I thought my ENT was wrong. So I went to a neurologist because they know about pain. Right away he said he could tell I was in a lot of pain and I felt relieved because he believed me. They did tests and he said nobody had scored as high as I had in pain. I had an MRI and it showed that the tumor had grown back, was twice as large as the one that had been excised, was very aggressive and was pushing on the nerves (that's why the pain was so bad). The ENT was notified and he came to the hospital to tell me he couldn't see me anymore because it was beyond his expertise.

After telling me for two years that I was lucky he was my doctor because few doctors knew about these tumors, he dropped me like a hot potato. I was scared, I thought I was going to drop dead at any moment and was terrified that it would happen in front of my kids. I didn't think I could find a doctor that could help me.

I was scared, sad, angry and became very depressed. But someone up there likes me. I went to see my psychiatrist and she helped me get back on my feet and find an excellent ENT. One who actually knew what he was doing. I've been seeing him since then and I trust him 100% not only because he is a great doctor but he always tells me the truth, tells me the choices I have and does not ignore my questions and concerns. These days I see him only once a year just to keep in touch and because he wants to know what's going on with me; he gets the tests results from the other docs I see regularly. He referred me to an oncologist when I started having mets and to a radiologist when I needed radiation treatment. Both the oncologist and the radiologist are great and I also trust them 100%.

In spite of the emotional roller coaster my family and I went through at that time, I am able to trust my doctors, not just because they are good but they don't ignore anything I tell them. They are the ones that started me having follow-ups with MRIs, scans, blood or whatever. I don't have tests everytime I see them but I have them once or twice a year, sometimes more, depending on how things are. I think they are actually keeping an eye on me and are ready to take care of whatever shows up. Having a doctor that listens and does not ignore my concerns is very important to me.

Amber, if you are not satiusfied with your doctors and do not trust them, find others that you can trust. Get second opinions if necessary. Follow-ups with scans or MRIs are important.

I can imagine what you and your family went through when you were told the cancer had returned and you had just a year to live. It doesn't sound crazy to me. My family and I went through something similar, there were lots of tears but that's exactly what gave me the strength to fight back. I didn't want my family to suffer and I didn't want to leave my little children without a mother.

Not all doctors are the same, some are better than others. I don't think your doctors did this to you on purpose, mistakes and misdiagnoses happen.

I hope you have good results with the scans and tests you will be having. Do not lose hope and if you do not feel comfortable with your doctors, find others and learn to trust again.

All the best to you and your family!

manna1qd's picture
manna1qd
Posts: 48
Joined: Dec 2007

I am sorry you had to go through that. Thank you for sharing your story. When doctors make mistakes, it hurts deeply. My father had a doctor who kept telling him that his sputum was bloody because of a benign esophogeal condition. Granted, he had a negative bronchoscopy but I think he knew it was too good to be true. He never went for a follow up bronchoscopy and eventually was diagnosed with mets. I find it hard to trust doctors to be right about my symptoms because of that. I am very sensitive about doctors who think I am in the office to much to check this or that. I am a cancer survivor too. We want compassionate and competent doctors. Be persistent in getting what you want. Find the doctor who listens to you and gives you the information you need and want. Find one who consistently has time for you, is caring and provides explanations about why you are having the symptoms you have. And it's about you, not him. When it's all about the doctor, it's a red flag he isn't thinking enough about his patient. There are fortunately some kind and brilliant physicians out there. You deserve a trusting relationship with your doctor. It is natural not to be so trusting now and it will take time and positive experiences to rebuild the trust. I believe you and give you a big hug!!

Luciana
Posts: 3
Joined: Jan 2008

I totally agree with the messages posted to your message. I think it is so crucial to find an oncologist with experience.. 2 months ago a gastroenterologist told my father my mum was going to die, without even knowing what tumour it was that she has (now apparently a sarcoma, it's in the retroperitoneum, they will operate this sunday 20th jan.). He told us she will get cured because there are no metastasis.
I suggest you very strongly that you get in contact with a good cancer center like MD Anderson or Dana Farber, even if it is for a second opinion. In the cancer forum I am subscribed there was a similar case (someone had been misdiagnosed by their doctor) and they said there was no cure. She took his husband to MD Anderson and they gave him a radiation therapy that shrunk all his tumour in his lungs (which were inoperable) and he is now NED!!

Don't get scared by what non-specialists say, fight on and find a good specialist in lung cancer at least for a second opinion, it can really make a difference between a possible cure.

I wish you all the best for you and your family

Many hugs,

Luciana

Luciana
Posts: 3
Joined: Jan 2008

I totally agree with the messages posted to your message. I think it is so crucial to find an oncologist with experience.. 2 months ago a gastroenterologist told my father my mum was going to die, without even knowing what tumour it was that she has (now apparently a sarcoma, it's in the retroperitoneum, they will operate this sunday 20th jan.). Now, our sarcoma specialist and a specialist surgeon told us she will get cured because there are no metastasis.
I suggest you very strongly that you get in contact with a good cancer center like MD Anderson or Dana Farber, even if it is for a second opinion. In the cancer forum I am subscribed there was a similar case (someone had been misdiagnosed by their doctor) and they said there was no cure. She took his husband to MD Anderson and they gave him a radiation therapy that shrunk all his tumour in his lungs (which were inoperable) and he is now NED!!

Don't get scared by what non-specialists say, fight on and find a good specialist in lung cancer at least for a second opinion, it can really make a difference between a possible cure.

I wish you all the best for you and your family

Many hugs,

Luciana

Luciana
Posts: 3
Joined: Jan 2008

I totally agree with the messages posted to your message. I think it is so crucial to find an oncologist with experience.. 2 months ago a gastroenterologist told my father my mum was going to die, without even knowing what tumour it was that she has (now apparently a sarcoma, it's in the retroperitoneum, they will operate this sunday 20th jan.). Now, our sarcoma specialist and a specialist surgeon told us she will get cured (or at least the possibilities look favourable)

I suggest you very strongly that you get in contact with a good cancer center like MD Anderson or Dana Farber, even if it is for a second opinion. In the cancer forum I am subscribed there was a similar case (someone had been misdiagnosed by their doctor) and they said there was no cure. She took his husband to MD Anderson and they gave him a radiation therapy that shrunk all his tumour in his lungs (which were inoperable) and he is now NED!!

Don't get scared by what non-specialists say, fight on and find a good specialist in lung cancer at least for a second opinion, it can really make a difference between a possible cure.

I wish you all the best for you and your family

Many hugs,

Luciana

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