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Posted

Hi everybody. This is beckyg's husband, and I have a question for y'all. My mother is the office manager for a doctor's office. The head physician is giving a seminar for other general practitioners about how gp's can be helpful to cancer patients. He asked me, and now I am asking you, for ideas about what questions you have had that could be answered by your general doctors. How can they be helpful to us throughout everything we are going through? If you have any ideas, please let me know. Thanks.

Curtis

Posted

I absolutely believe that any physician or GP treating cancer patients should have an empathetic and sympathetic bedside mannor. I've run into along of "mechanical" "by-the-book" with the personality of wood who keep you at arms length because they don't want to get personally attached to you. They need to know that not only are they treating a disease, they are treating a human being, someones husband, wife, brother, sister, or child that could very well be facing a bleak prognosis.

Along with what they believe and how they practice "statistically", they need to temper and measure that approach with 2nd, 3rd, 4th line options and a HOPEFUL attitude. If your doctor doesn't believe in the treatments or in you, how can you believe in yourself, how can you have hope.

Just my two cents.

KatieB

Posted

I of course believe 100% what Katieb said.

It would be nice that when a doctor (GP) has a patient with a specific cancer, that he or she becomes more familiar with the disease and the specifics. All cancers are different and the generic treatment doesnt work. Almost everyone has internet access, they can research and look information up as well as anyone. My GP is not embarrassed to tell me he is looking up something on the internet.

Posted

Thanks for asking the question.

From my experience, it would have been nice if they had just listened to what was really going on. They need to be more aware of the signs of cancer first of all. If a person is a smoker, they really need to look at the overall picture and do the tests. For the cost of a spiral CT, more people would find out sooner I believe and therefore have a better chance of survival. Listen to what the patient and their family is telling them. Don't treat them like they don't know what they are talking about. People tend to be very intuitive about their bodies. They know when something is not right, but they may not know what it is. That is usually why they go to the doctor in the first place. And lastly, if they see something that looks like a lung problem, (i.e. infection) they need to follow up with the patient for further tests. One xray does not tell the whole picture. They need to make sure the "infection" has cleared up and the only way to do that is to do the tests and xrays again.

Guest Ry not logged in
Posted

I can't say enough wonderful things about our GP. However, because my husband had quit smoking and lost a lot of weight, he never checked him for lung cancer, no x-ray nothing. I am sure he greatly regrets that now. My husband appeared to be in healthier than ever. So I agree they need to make an effort to do a better job at early detection.

John went in to the doctor because of pressure in his head. He had vena cava syndrome, pressure from the tumor on his vena cava was not allowing the blood to flow back to his heart.

The thing our doctor did for us and that other GP's can do for their patients is he pushed us through the testing as fast as possible. We were at the hospital for a CT scan, pushed through the biopsy, and sent across town to radiation in one day. He personally called the schedulers and the hospital doctors and followed us along the way that day. I heard the doctor say to the nurse, "Get me Dr. King." She answered that he had already called 3 times that day. When we arrived for radiation, the receptionist had his name there and said "Oh yes, your Dr. Kings patient, he just called." It meant a lot that he personally saw to it that John was moved into treatment as quickly as possible.

But the best part is when we got home that evening he called us at home. I'll never forget him asking if we wanted to come in and talk to him the next morning.

So I guess my short answer after all this is to make an effort so patients don't have to wait and wonder. Show them you are personally involved in their care and be an advocate so people that need tests quickly don't have to wait.

Posted

I'm not a patient, but can I pipe in here anyway? I'd like to see the general practitioner stay involved in the care of the patient who is being treated by a multitude of specialists who rarely (if ever) speak to one another. I believe the GP should be a "case manager" or "care coordinator" - i.e., someone who sees to it that everyone stays in the loop, esp. the patient and family. This would be a whole new role for most physicians, and it's really a nursing role, but unfortunately our world doesn't choose to reimburse nurses to do this, so the MD will have to do it. (Stepping back down from soapbox now.) :)

A GP who knows the patient as a person and as a patient can add so much to continuity of care, seeing that the blood pressure medication doesn't get forgotten along the way, for example.

Great question. I'm glad they are asking it. Best of luck with your project, Teresa

Posted

Oh yeah Teresa, good point. I should have added that when we went for the "talk" with our GP the next day the thing he told us was that he would coordinate everything. He said he would be the captain of the ship, and make sure everybody was doing what they should.

So when we wanted 2nd opinions weren't happy with the onc. etc. he is the one that referred us to someone else.

Posted

Ry makes a great point. My new primary care doc is wonderful. I think that the Primary care physician should aslo be willing to take on the role of advocate for his/patient. If something isn't going right with one of the specialists we should be able to enlist the aid of our PCP, for the opportunity to change specialists, or have him intecede on our behalf if changing the speciailist can't be done for some valid reason. My PCP has done some of this for me recently. None of my other PCPs ever did anything like this. The former PCPs and their Commnading Officer flat out told me that it wasn't their place to diagree with or go against the advice of the "Experts", not even based upon the complaints of worsening symptoms in the patient. My new PCP (actually I've been with him 2 years now) has been a tremedous help, and a big part of why I have received what I have in the way of good care. I appreciate him more than most can imangine. And he knows how to laugh, folks. He's a decent human being inside that very intellignent brian of his. So I guess we need our PCPs to reach more to the "Ideal" we hold of our doctors. I know that when they look at us as people, and they lose us, it hurts them...but to look at patients as "production" harms them in ways far worse than the normal grief they would feel when someone they know and value dies. I may be the means to the end of buying a monster mansion, a new yacht, membership at the new country club, whatever....but I'm also the one who refers the many newcomers to our community to his office door because he's so darn good at what he does, as is his staff as well. All of them, Nurses, Aides, Clerical. All of them.

Posted

Hello Curtis,

Great question and by the responses you hit a nerve; :shock:

Like Ry's John, I also have a wonderful GP. Very compasionate and caring. When I initially got sick, which we thought was the flu, he sent me for an X-ray because he knew I smoked and all the signs were there. That decision enabled the cancer to be operable.

So I think besides the bedside manners the most important thing a GP can do is to know the symtoms and take the right actions, paticularly with smokers. Don't hesitate order the X- ray or CT scan. Also, I think it helps to know the stats. and help smokers quit. Don't accept the stigma, " if they smoke they deserve it".:x I think GP's can do more to change this .

I think showing that compassion and caring by taking the time to explain and coordinate things comes next. All my appointments were coordinated by my GP, the specialists new I was coming and I was told to let him know if there were any problems at all. I remember getting a few calls at home after 9:00 PM from him, just checking up on my status.

Lastly, I think it's real important to be able to step back and turn it over to a specialist. Because, I trusted and liked my GP so much, I wanted him to handle my follow up tests. I had an oncologist who I planned to see yearly to review everything. Well, after 8 months, we both came to our senses. My GP just could'nt answer the questions and concerns that I had. He stepped back and my follow up is now handled by a medical oncologist. I see him every 3 months and ct scans are now done every 6 months.

Oh, I did have to see him last week and he was thrilled to post the new ALCASE poster in his office along with the story that I have over on ACS.

great question,

God bless

Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today!"

Posted

Bobmc reminded me that physicians need to teach, not preach, too. They shouldn't tell someone over and over to quit smoking; they should give the person the tools to quit smoking. And that goes well beyond a prescription for Zyban. Ditto diet improvement, weight loss, exercise regimens. Tell patients HOW - they already know they SHOULD.

Okay, Curtis, now that I've detailed all that is wrong with physicians, feel free to let your Mom invite her GP/friend/coworker to bend my ear about nursing......we're all imperfect. :)

Posted

Yes, we are all imperfect. But the whole point of this thread is to be able to offer constructive criticism for gp's. So if it hits them too close, we can point out that they asked us to start this thread.

Keep the ideas coming. Thanks everybody.

Curtis

Posted

Okay......here's another thing to think about.

Please tell the GPs that they should be looking for lung cancer in their young, former smoking, non smoking, and never have been a smoker patients as well. If a respiratory infection does not go away after a single course of antibiotics then a spiral CT should be done on the chest and abdomen. We have too many lung cancer patients like your Becky, Snowflake Becky, Heather, Janet K (who recently passed away), Rich, who were either never smokers or who smoked lightly for just a few years then stopped 18 to 20 years ago. (Janet died at age 44. She was a 3 to 6 cigarette a day person for a few years and had stopped smoking amost 20 years ago. Like me, her tobacco use history wasn't considered a big factor in the development of her disease.) My "primary tumor" was found when I was 32 years old during a CT exam for Polycystic Kidney Disease. The didn't diagnose it as a lung cancer because it contained calcification speckling. Took another 12 years for the lung cancer to be diagnosed. My oncologist told me recently that she sees many young late stage lung cancer patients because their primary care docs don't look for lung cancer in young, non smoking or former smoking patients...and they should be looking, because smoking isn't the only "smoking gun" in the development of lung cancer.

If patients have a history of Asthma, Coccidiomycosis (sp?) or any other fungal infection of the lung, a Mycoplasma infection of the lung, Fibrosis brought about by having been exposed to or working within the dusty trades (insulators, tailors or dressmakers, bakers, groundskeepers, painters and plasterers, Chimney Sweeps and furnace cleaners, fine finish carpenters and cabinet makers, people who work with pressure treated lumber), and anyone who has a history of autoimmune disease in the family...should all be watched a bit more closely than the general population.

I'm off on a tangent here....It's just that I KNOW one does not have to smoke to develop lung cancer. And I know that there must be a genetic link in at least some forms of lung cancer... I feel like a poster person for several genetic anomalies...why not one for lung cancer along with all the others. Seems to me that if there is genetic damage at conception to one chromosome then the potential exists for damage to have occurred on others. Just because we haven't "found" an inherited form of lung cancer doesn't mean it doesn't exist...just that it hasn't been identified.

I think about this all the time, because I worry about my kids. Can't help it... but I also think about how different things might have been if I had had lung surgery at the age of 32 when I had a single tumor that was only 5 mm in size instead of 12 years later when that tumor was 1.5 cm, and the other three were 1 cm each, with a 3 cm lymph node and some in the 2 to 1 cm range. Know what I mean?

Posted

Okay, of course I have to add my two cents here.

I think the most important thing for a GP to remember is .. don't be afraid to admit that you do not know something. I am old enough to know that doctors cannot know everything and nothing has made me respect my GP more than the fact that he'll admit he doesn't know the answer to something..but will find out for me. And the bottom line is, I owe my life to this man.

I had been going to a doctor here for a chronic cough and he kept prescribing mucous enhancers and telling me to quit smoking. Lucky for me his marriage plans didn't work out and he hightailed it back to Denver. In January, I went to the medical center and saw a brand new doctor..only reason I went to him is he had the first appointment open. I went because I was incredibly tired all the time...had the fatigue that I always got when I was pregnant. He had the lab take blood work and then they sent me to xray. I was surprised that he was having a chest xray taken since he hadn't said anything to me and I didn't mention a cough at that time. He hadn't even asked if I smoked.

THe rest, of course, is history. However, this doctor has impressed me so much because he has never been afraid to say that he wasn't sure of something. After my Cat Scan which followed the xray, he spent the evening sitting at the hospital with the radiologist to look at my CT and to debate the steps that should be taken next. All along my doctor has sought other opinions, whether from radiologists, his old roommate who is now a Pulmonologist and the Oncologist who treated his father. And each time, he has not hesitated to tell me that that was what he was going to do because he did not have the answer, or wanted to make sure that he wasn't missing something. I've always felt like we were in this together! When I couldn't figure out what to do about adjuvent chemo and 3 doctors were telling me different, my GP is who I went to for advice. And he scratched his head and said he didn't know what I should do and he understood how I felt. He then placed a call to his dad's Oncologist to get HIS advice because he said he was the best Oncologist he knew.

And just as important as all the above, my Doctor has never made me feel that there were other patients waiting and has taken as long as I needed to take. A few years ago this doctor was jogging with his friend and an 18 wheeler hit them. His friend died and this doctor supposedly spent a long time recovering. I sometimes wonder if that is what made him such a compassionate doctor....his understanding of how it is to be the patient.

Posted

I guess it's my turn to chime in...

My GP has been a VERY important part of this process. Last November, I was in her office for a dry cough of three weeks...I didn't see her the day that I went in, she was on vacation. In fact, I saw a PA who prescribed an antibiotic (Zithromax) since I was presenting like strep and have been prone to it. On the fourth day of the antibiotic, I hacked up some bright red blood and waited a day to call the office - on day five, the sputum was dark blood. Hubby told me if I didn't call, HE would, so I called...

...and the whirlwind began. At first, TB was being ruled out - she ordered a sputum culture, a TB test with controls (THREE "bubbles") and a chest X-ray (I guess TB shows on X-rays)... TB all came back negative, BUT, the X-ray showed pneumonia... New diagnosis was pneumo-streptococcus. At this time, hubby was ALSO diagnosed with pneumonia...

A month later, we both go in for follow-up X-rays - his is clear, mine has a cloudy area in the right lung. My GP does not like the look of it and sends me for a CT scan... CT comes back with "suggest biopsy to rule out carcinoma"...

An aside here, my GP has NEVER claimed to know everything and has sent me to a specialist for a consult twice before because of things that were beyond her knowledge base. I am VERY secure with a person that can admit that they just don't know and send me to someone who does.

So, my GP lines me up for a consult with THE BEST thoracic surgeon in the area, although his schedule is booked SOLID and I have to see him at 8:00P! Biopsy is scheduled for a week later, he calls me with results that night (he was on his way out of town that evening for a week and didn't want me to have to wait)... I believe he also called my GP personally with results as she called me the very next day to see how I "was" with the diagnosis. She was as shocked as I was with the diagnosis - we were all expecting an infection or something "easy"...

The surgeon says that I need to get the cancer out ASAP, no longer than three weeks, and tells me not to wait for him, to go with one of his partners. Two weeks later, surgery....

I did NOT consult with an oncologist on other possible treatments prior to surgery, it seemed very urgent to my GP and the surgeon that it come out, so I went with that advice...and my "Stage I or II" became Stage IIIa upon surgical pathology.

After surgery, I had a consult with an oncologist. His thought is that chemo doesn't do enough for my form of cancer to validate the side effects, BUT if I wanted to do radiation, that was fine with him (less invasive). He also sent me for a consult at MD Anderson because he wanted to be sure that I did get a second opinion...

Through each big step of this process, I have discussed my options with my GP and asked her opinion. No, she's NOT a "cancer doctor", but can answer a lot of my questions and offer suggestions.

I believe that her "curiosity" saved my life. If she had not pushed for more information from one cloudy X-ray, the cancer would have grown exponentially for the last nine months and the end story may have been far different...She's a real gem - and I'm SO GLAD fate sent me her way.

Becky

aka Snowflake

Guest Karen C.-Dave's wife
Posted

This is a GREAT question, and wonderful they're doing this!

Well, Dave's GP (mine, too - we both LOVE her) was treating him for asthma since the time we returned from China last November until he was diagnosed in late March, when I took him to the emergency room. He was also having weird leg cramps and she was just about to get his blood tested for that. He had the lab slip but hadn't gone 'cause he felt too bad. So she was on the verge of diagnosing him (his tumor caused his sodium levels to drop dangerously low which caused the cramps and weakness - the emergency room doc was right on top of that one). Dave had a history of asthma and also we returned from China right when the SARS stuff hit so everyone was more focused on those two things, so I can't fault her for not immediatly zeroing in on cancer, especially since he is soo young. BUT I really wish she'd ordered a chest x ray, espcially since he was a 20 year smoker, although when I took him to the emergnecy room, the doc, first thing, did a chest x ray and blood tests. One lung tumor barely showed up on the xray and the biggest one on his lymph nodes didn't show at all until he immediately did a CT scan (that night, right after seeing a shadow on the xray).

OK, back to the GP - we called her first thing that Monday when Dave was in the hospital, and she was right on top of his treatment, although she didn't have privileges at the hospital we went to - so she called up one of her best friends, another internist, who did, and that doc came and read Dave's chart every day or so and talked to me. Our GP called the room every other day or so. She told me to come in for a checkup, she wanted to keep me healthy. I did, and she found a melanoma. Caught it and surgically removed it at a Stage II. So, by showing care and compassion and actually speaking to us personally, as a friend, actually, she probably saved my life. Melanomas are VERY deadly if they get much past a Stage II.

That's our story. Bottom line: be aggressive with any patients who are smokers if they show recurring respiratory issues, no matter their age, and pay attention to the health of not just the cancer patient but any other of his/her family members who are also patients.

Sorry to ramble but wasn't sure how else to make my point.

Thanks,

Karen C. (Dave C's wife)

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