Doctor Questions

We are always told to write down your list of questions for your doctors and even bring someone to write down the answers. This can be appropriate for when you are first diagnosed with something nasty. But it doesn't hold true for regular follow ups with  your other doctors.

Over the years, I have learned not only to bring a list of doctor questions to appointments. But I have also learn to break it down into as few as possible, into two categories.

Category one is for the list of issues you have noted since last seeing them. For example you had the flu in November for ten days. Or have been under a lot of stress from work recently.

Category two is for as few questions as possible. Like three if you can do it. For example, if you were seeing your cardiologist:

• What was my latest test result and what does that mean?
• What are my treatment options for now?
• What is my prognosis/next steps?

They may sound simple, like in the 'duh' category, but they are the ones you really want to get answered and take note of the answers.

I can't tell you how many times I got to my doctor appointment and have a huge list of questions and only get through the first few. Prioritize. Keep it simple. Your doctor is probably short on time so you can't overwhelm them with too many things at once.

However if you have a huge issue, you need to make sure that is the main topic of your conversation. Its your appointment and you need to make the most of it. So be efficient.

My Back Pain Break Is Over

Just over a year ago, I switched to a new back pain doctor because my old one was an idiot. I like my new doctor. I saw him a whole bunch of times through 2017. At my last appointment, he said to me "instead of scheduling your next appointment, why don't we wait and see how you do and you call me when you need to see me?" I thought that was fine. I have not seen him since November and have nothing scheduled.

Unfortunately, my back is very unhappy with me in many ways. The pain level breaks through my pain patch. This has been going on for a week or so. I might wait another week or so before calling but I don't know how long I can last.

Damn, damn, damn. This does not make me happy. I didn't lift or carry things anything. I have done some laundry today but that doesn't usually hurt my back. Today I think I had an uncomfortable chair at the garden club meeting today.

On a positive note, it has been a while since my back has been this bad and required any treatments. This has been a very nice break. But at least I am not seeing my oncologist.

Taking The Good With The Bad

Sometimes, or maybe most of the time, I never get good medical news. I swear, my doctors go off script all too often. So yesterday I got some good news and some bad news.

First the knee doctor said I can start driving. But I need to take it easy. I need to be able to slam on the brakes with my restructured knee. Apparently the surgery did some restructuring but I am not a doctor so I don't really understand it. (All I know is I have lots of knee exercises.) First before driving, I have to practice driving in a big parking lot (like when I first learned to drive) or in our quiet neighborhood to see how it feels. And start driving slowly, not just not getting speeding tickets, but take it easy and work up to driving long distances. My husband was with me so he heard it all and will keep me restricted (maybe I should have left him in the waiting room).

In addition, I don't have to wear the awful, uncomfortable brace any more. I have graduated to the little soft brace which has little metal hinges and gives support. But I still need to be careful with my knee. I can't stand on it for long periods of time. I can't bend it more than 90 degrees, except in PT.

I can't go back to the gym until mid to late December. I should continue PT for at least the end of the year. And I need to go back to the doctor in two months.

After getting all that wonderful news at the doctor's office, we headed down to the blood lab. When we checked in they told us there was a 40 minute wait. But by some miracle we only waited 20 minutes. Today I have a nasty bruise from where they took blood - that happens sometimes.

This morning I got my blood test results. I know I am going to get calls from two doctors because some of them are way different than before. This means medication changes and doctor appointments.... Oh, joy. (No, nothing major but its just concerning when they change too much.)

So it was a good and bad day. But we went to the grocery store so we now have food to eat. I'll just wait to hear from my doctors.

My Cholesterol Improved

I have no idea what I did but my cholesterol is much better than it was a year ago. I don't know what I have done differently with my diet (I thought I had adopted a whole bunch of bad eating habits) but my total cholesterol dropped more than 50 points in the last year. Maybe I need a burger and fries for lunch today...

That was the good news. The bad news is I have referrals to three different types of doctors - ENT, eyes, and a pharmacotherapist.

The pharmacotherapist is going to review all the meds I am on. I like that idea. I have so many medications from so many doctors. My PCP is concerned about too many interact and why I am on them and how can we get rid of some. Finally someone is taking a look. One big part of the problem is my previous pain management doctor would just increase my meds without explaining or change to a new med with no explanation. Now my new pain management guy is actually talking about reducing some meds and has changed some already.

My PCP told me that a lot of my weird numbers like heart rate and others can be screwed up by all my medications. She sent me for a pile of bloodwork and an EKG since my last one wasn't so great.

So I thought it went well. I even lost 5 lbs. But I forgot to ask her one key question. Damn. I'll send her a message later.

So after cancer, I like this kind of doctor appointment. She looked at my big picture and can't find any reason I might drop dead tomorrow.

What Does Your Pain Medication Hide?

Last weekend I was a total idiot and forgot to change my pain patch for so long my RA was causing me agony. But I also felt pain in other places that I did not expect. My RA pain was definitely the worst of all.

What this little spurt of idiocy tells me that my pain meds, especially my pain patch, are working and do take care of my pain. This is a very nice thing to know. I am not living in pain (most of the time) because of them.

But then what concerns me is what are my pains caused by. Okay, I am no idiot but I do know that what I felt in my hands and feet is caused by my RA. But then I have pain in other places that I didn't expect. These now need to be explored (not here) but with my doctors to see what causes them - in other words, are they something to worry about.

Pain is your body telling you something is wrong. I just need to know what's wrong and hiding behind my pain medication. Damn.

I Forgot To Keep Quiet

Everytime you go to the doctor they ask if you have fallen recently. Do you know why they ask you this? Its not because they want to check if you have skinned your knees or ask if you want an ice pack. They want to know if you are at risk of injuring yourself by falling. Or really are you a fall risk.... Which is very bad.

But you say its only a little yellow bracelet. But no it's not. It means they label you as a fall risk until you can balance on your toes on a paddleboard, a million hours of PT, or something. Its hard to get rid of that label on your medical chart.

Yesterday afternoon, I ran into a particularly slippery section of grass in our yard and fell. I didn't land on my bad knee (the one slated for arthroscopic surgery because it keeps locking up) but on my slightly less bad knee (the one with a torn ACL that can't be operated on). No I am not further damaged other than some sore muscles and jolted body parts.

I had a nicely timed appointment with my knee surgery this morning. I showed up and STUPIDLY told the nurse that I fell on my knee yesterday afternoon. I only did that because I knew they would notice it was swollen.... But I clearly wasn't thinking. I forgot to keep quiet.

The main topic of conversation with the doctor was scheduling arthroscopic knee surgery. I will need crutches for a week or so. I won't be a fall risk (note sarcasm) while on crutches. I will then be teetering around, but not a fall risk.

The Truth, The Whole Truth, Nothing But The Truth

The truth about cancer treatment is very complicated. The treatment options are very deep, strong, and harsh even. They are just drastic. Because they are so drastic, they can very well cause a lot of post treatment effects - i.e., side effects. The information on side effects is not a list, but a mountain.

Yes we want the truth. Oncologists I think waffle on how much information to provide to their patients about their treatment options when faced with their treatment options. I can tell you its a lot of information to take in and absorb - and probably  not everyone is ready for that. And our doctors are unsure how much information each patient can handle at that time.

Our oncologists can give us all sorts of great information - recurrence rates, risk reduction (what the heck is that?), side effects (only a few), and how you are going to be a better and newer more normal person after all. and then, after treatment, you start to feel crappy. You are not the same. You are tired. You might be depressed even. But why? Because you didn't get the whole truth before.

At each oncologist appointment, we leave the room with a brain overflowing with information and we try to grasp everything that we are told. We are probably clutching a few brochures covering our treatment and/or diagnosis.

Did we remember everything? Probably not. Because it was too much information all at once. Even if we bring a helper to make sure all our questions are asked and their answers are written down, we still may not have gotten it all.

But as patients, we need the truth, the whole truth, and nothing but the truth.

"Cancer treatment can be life-saving. It can also be life-changing—and not in that wonderful, fluffy, “positive thinking” way that extols the virtues of enduring hardship. Newly diagnosed patients need to be given the facts, fairly presented, so that they are not blindsided if, instead of getting better and better after their treatments, they slowly get worse and worse. This can be considered a fair trade-off for the chance to live longer…but, like the chance of getting lymphedema or a secondary cancer, it needs to be a risk you take with your eyes wide open."

Just tell us like it is please.

Weird Test Results

We all get these standard medical tests - like a colonoscopy.... I get regular chest x-rays... Why? Because back in the dark ages of my thryoid cancer, they saw a 'thingy' in my lungs. It was a benign thingy but they wanted annual chest x-rays to check on it to make sure it didn't do anything.

So after over 25 years of annual chest x-rays for the thingy, I was told they no longer needed annual chest x-rays for thingy's, they would wait until any symptoms occurred. Then, as luck would have it, I was put on methotrexate for my rheumatoid. As there is a possibility of lung problems caused by methotrexate, I was put back on 'sort of' annual chest x-rays again.

This week I saw my rheumatologist and she realized I hadn't had an annual chest x-ray for at least two years so she said it was time. So I went.

Yesterday the results showed up with a weird comment.... I hate weird little comments from radiologists. I sent a message to my rheumatologist for an explanation. I really hope its a nothing. I don't believe it is related to the original 'thingy' but I do want a definition.

The problem is that once you have cancer, with every weird test result you start to go back on that really bad cancer roller coaster with all the 'what if's' floating through your brain. I just hope I get an answer soon. Dr Google gave me lots of really bad reasons for the cause of this weird comment so I really want to know asap. And I need to remember to avoid Dr Google.

Taking Charge of My Medical Crap - Again

I try to be in charge of my medical care. I really do. I take notes at appointments and I write little notes to myself in my calendar on things to ask my doctors at each visit. I am not sure if I am weird for doing this or not but I have no brain so I can't remember anything.

In recent months, I have a new pain management doctor who has been very good at talking to me about different pain medications and what are options. I am very happy with this. Basically he is helping me switch to new medications to replace the ones that I have with ones that work better - fewer side effects, reducing the number of medications I am on, and focusing helping me. I really like this (and resent my old doctor who just gave me more medications and more medications.)

After my most visit with him this week, I am now energized to talk to my other doctors about the number of medications I am on and how they work. The next two doctors who prescribe the most meds are my meds therapist, who I see this week, and my rheumatologist, next appointment at the end of the month. I want to review all my medications and see what we can do to get rid of ones I do not need or find better alternatives if available.

I often run into problems finding medications to treat basic things such as needing antibiotics. Because of my allergy to penicillin and my other medications, I am very limited in what is available to me. Maybe with changes, I could actually get treated when I need it.

But anyway, I want to talk to my rheumatologist and meds therapist to see what we can do. I also want to take a personal inventory of current issues and decide what I should ignore and what might actually be treatable. I feel I need to do this because I have so many issues and I rarely see my PCP. I need to be organized before I see her in September so I am in charge when I see her.

I think I need to take more notes.

Stepping Back to the Big Picture

Sometimes I just need the big picture and skip the details. Yesterday I saw my knee doctor. I asked him to update his notes on my appointment on the big picture state of my knees. I need this information for my SSDI application and I sometimes just need the big picture for myself.

The status is, and I quote, "At some point they will end up being bone on bone and we will need to talk knee replacement. That could be in ten years or two." In the meantime, I can continue to get steroid injections in them and possibly arthroscopic surgery to clean up the right one.

I hate all this medical crap. Sometimes I get too bogged down in the details and the day to day crap that I forget about the big picture. And sometimes, like this one, the big picture isn't too great. The answer I wanted was 'your knees will be miraculously cured in about two months'.

But I really did need the big picture for my disability application. Which is still grinding through the system, awaiting a meeting with a judge.

I digress. I will also need to talk big picture with my other doctors as well. I could use the overview from them as well.

Math Class is Important In Determining Your Cancer Prognosis

Who knew math class would be so important later in life? Here's the problem: You get a cancer diagnosis and your doctor starts spouting numbers at you. You survival rate is this, but if you do this treatment it could be more like this. All of us sit there in a daze looking at the numbers and blindly staring at your doctor and trying to make a decision.

If you are lucky, your doctor says 'take all these numbers with you and go home and think about it'. If you are unlucky you forgot all the math you ever took and can't decide if a 60% survival rate is better than a 40% death rate. And if you are afraid of math, skipped too many classes, or just hate numbers, you get really stuck.

However we have now medical research to the rescue as this is has become a recognized issue:

"Many of the toughest decisions faced by cancer patients involve knowing how to use numbers – calculating, evaluating treatment options and figuring odds of medication side effects.

But for patients who aren't good at math, decision science research can offer evidence-based advice on how to assess numeric information and ask the right questions to make informed choices."

So there is a bunch of research that was done and you can go read it all. In my mind, what it boils down to is this (and write everything down):

• Ask your doctors for the numbers
• Ask them to explain what they mean without using numbers - is this better or worse than average?
• Ask about the risk in real numbers, not just in comparison. If something is 0.3% and its doubled, that is still a low risk. 
• If there are too many numbers, ask your doctor to tell you what are the two best options and base your discussion and thought process on those.

Finally, take a number friendly person to go with you and explain all the numbers to you.

And stop worrying about all those missing math classes and forgotten algebra so you can help yourself determine the best treatment protocol for yourself.

What An Oncologist Should Not Say to a Cancer Patient

We hear all about good doctors and not so good ones. But every so often we hear about the one's you really do not want.

Yesterday someone told me about the recent visit to her oncologist for her breast cancer treatment. She brought her sister with her for moral support and to help her out. I think she said her sister asked the oncologist something about that after chemo the tumors would be gone. And the oncologist replied with 'unless there are any other tumors'. I don't remember the exact words but the point is NEVER say that to a cancer patient.

Seriously, what was she (the doctor) thinking? You want your oncologist to be full of reassurances that after this nasty brutal treatment you endured that the chances are pretty good that you are on your road to recovery. Yes, we know that you can get more tumors at any time. Just because you are treated you are not out of the woods (ever). If that was my oncologist I would be shopping for someone else.

So if your oncologist says anything like this, run, don't walk, away and find a new one. Clearly that doctor doesn't quite get it.

Deciphering Test Results

As a result of my RA and its treatment, I need to get blood work done every two months, or more often. How fun.

Yesterday I went for my first blood work of 2017 to find out that the doctor's standing orders in the hospital's computer system ended at the end of 2016. I had to call my doctor to get them reinstated. Then the tech tried three times in my elbow (I have little scrawny veins and only one available arm after chemo) before trying twice in the back of my hand before getting in.

Now I have the results back and I am trying to decipher them. What exactly do they mean? I know a few of them, but not all:

• My red blood counts never recovered from chemo
• My CRP (c-reactive protein, a sign of inflammation and RA) is elevated.

And the rest of it, some in normal ranges and some not, don't make much sense to me. I see my rheumatologist next week and I am sure she will say 'helpful' things like: 'your blood counts are pretty good but I see the elevated inflammation'.

I'll wait until I see her next week to learn the rest.

Pre-Treatment Education

So you get a crappy diagnosis, I have had a few, and you instantly want your body fixed! Quickly you rush to the surgeon and get the nastiness removed. With cancer, after surgery you usually get more fun with treatment such as chemo and radiation. Then pow, your body starts protesting and you instantly end up with multiple side effects, including ones that could cause permanent damage to your body and require additional surgeries.

This scenario is not that uncommon with breast cancer patients. Women want that thing out! They have surgeries and chemo and radiation. I have friends who ended up with problems with their mastectomies which required multiple more surgeries. Some have suffered through problems with the 'donation' site on their bodies where tissue was taken to create a 'foob' after a mastectomy. I have a friend with permanent cardiac damage as a result of chemotherapy. Me, and others, have lymphedema as a result.

The rush to surgery means lack of attention to potential side effects and body changes, both physical and emotional. Not enough attention is placed on the after effects. I have always thought that with both my breast cancer surgeries and treatment and many other medical procedures.

This morning I read over at Hen Backtalk and found a link to an article talking about what kinds of tests to request before treatment. While the doctor, author of the article, focuses on specific tests before breast cancer chemotherapy. But I believe this is true, I think this is a very valid point. Not enough focus is given to this part of the medical decision making process.

Doctors and other medical professionals usually can't give us all the details because they usually have not had the treatment protocol themselves. I think if you are facing a major medical decision, especially cancer treatment, find someone who has been through this themselves before making any decision. Cancer surgeries are usually focused on removing as much of the cancer as possible and getting clean margins. So with breast cancer, for example, you might end up very 'lopsided' due to the need to get the clean margins. You can't have enough information before major surgery.

This is where support groups and online forums can be so helpful. Don't be shy, get out there and ask your questions. Find someone who has gone through the procedure and decision process you are facing to learn about side effects and after effects in general. Education is always good.

Annual Physical

I am just fine. I am damn happy. And perky! And feeling no pain. No that's a big fat lie. I have a lot of pain. I ran out of steam yesterday. I was very tired by the end of the day. Apparently I did too much. All I did was go to the gym. And then the library and one store. That was it. I was wiped out. I even took a break after the gym.

Next week I have my annual physical. I have two options: go in and lie and say everything is fine, or go in and tell the truth about how I feel. This could put me back on a medical roller coaster of a sort. At this point I am not concerned with out going back on the medical roller coaster as I am with being as healthy as I can.

I do not think I have something bad going on. Its just my annual chance to sit down with my primary care physician and go through how I am feeling, what are my concerns, and what we can do to make me do better, or even improve my health - now that's an interesting concept.

Now I just have to make a list of what I want to talk about. Damn.

There is a really big gap between patient needs and research advancements

At a recent conference, Dr Piccart-Gebhart asked the question of how the highly fragmented breast cancer research is meeting patient's needs. This raises a very good point.

We know there is all sorts of medical research going on right now. It covers many different areas in gene expression, tumor micro environment and more, and for each type of breast cancer that exists. But does it answer these questions, as noted in the articlets?

"Patients with advanced-stage HER2-positive breast cancer tend to want answers to the following questions:

• Can I live for many more years with the disease?
• Can I be sure that the chosen therapy will truly help me?
• Can I stay away from therapies with marked side effects for long periods of time?..."

"Patients with early HER2-positive breast cancer have a different perspective when it comes to tailoring their treatment. What they want to know is:

• Can I be sure that my long-term treatment will help me?
• Can I do as well with a simpler or a shorter treatment?
• Can I forgo aggressive chemotherapy?"

I know these questions were posed as for HER2+ patients but I think they are applicable for all early and late stage cancer patients. As a cancer patient, I hear about new research all the time but very rarely am I able to 'connect the dots' and figure out what it would really mean for me if available when I was diagnosed.

The article I mention above had an doctor and consultant to Roche-Genentech answering the questions for HER2+ patients. I am not a doctor.

Usually when I ask my doctors about a new advancement that sounds like it might work for me, I am told that yes its new but needs more research before they can be sure... Well how can I tell? I don't have the training to understand all this medical stuff. It would be nice if research was presented in a way us patients could understand and how it ties into other research and what it means for the patient. This is a really big gap. 

How strong is that 'little voice'

Tomorrow I have a doctor appointment. Its not a big deal, just a follow up with my rheumatologist, including a discussion of my blood work last week. On the surface its not big deal. I don't expect any big news. Maybe a little tweak in my medications at the most.

But there is always a little (tiny cancer 'what if') voice in the back of my head at every doctor appointment. The question is always 'what if' something isn't right that leads to more testing that leads to something else which finds something 'bad'.

I can't help it. That little voice is an evil thing. Learning how to balance that evil voice is a lifelong journey after cancer. It never goes away. Keeping it quiet is the challenge.

When I had my hysterectomy before breast cancer, nearly 25 years after thyroid cancer, I was compelled to ask my surgeon if there was any chance of cancer there. I couldn't stop myself from asking. She assured me that they would 'slice and dice' to make sure there was none.

And there was none.

After breast cancer, that evil little voice reared grew in volume again. With a vengeance. Its only been over 8 years but that voice tends to sneak into the back of my brain. It tries to tell me that some ache or pain could only be 'really bad'. I can't let it run my life.

But I will go to the doctor tomorrow and tell that stupid little voice to keep quiet. I hope. Maybe if I could leave it behind that would be better.

Characteristics of a good doctor

I found this article online on what makes a good rheumatologist. But I really think the criteria should apply to all doctors.

The criteria are:

1. Makes Time for You - When you have an appointment they focus on you and take time to answer your questions and do not leave you hanging when they rush off to their next appointment.
2. Is On Your Team - They make you the leader of the team. They back off and let you make the decisions on what is best for you but also know when to more strongly suggest a different treatment.
3. Is Available - Works to fit you in or speak to you on the phone when you really need it.
4. Is Compassionate and Resourceful - Warmth and concern will allow you to relax and ask questions and bring up concerns.
5. Has a Sense of Humor - if they aren't relaxed enough to bring a sense of humor with them, you may never be able to get them to open up with you and you with them.
6. Don't Be Afraid To Switch - Doctors, like many other things, are like dating. If  they don't make you happy, move on.

I have learned to speak up to my doctors and make sure I make decisions instead of letting them railroad me into a decision. I also want a doctor I can get on the phone, get into see, and talk to honestly. If I can't do this with my doctors I fire them and move on.

This has taken me a long time to get to this point. You spend more than 30 years dealing with multiple doctors and conversations that always lead to 'with your medical history, we need to be sure' and you will be right there with me.

A good doctor will lead you to better care and better able to manage your ailments. So go find a good doctor who will lead you on the road to better care for you.

Being a complainer

There is a difference between complaining and being a complainer. I complain sometimes, we all complain. And we should. We should speak our minds and make our wishes known. But if we complain too often we can become complainers where we are either Chicken Little or the Boy who cried Wolf so that when we have real complaints, they get lost or overlooked.

Here is a tale of a complainer who complained so often that her complaints became overlooked and she ended up diagnosed with stage IV thyroid cancer and died from it which lead to a malpractice suit.

I think there are a couple issues in this story. The patient complained so much and spent so much time talking about other issues that it became difficult to discern real medical issues from other issues. Of course her doctor could have done more to figure out the cause of her symptoms but he and a specialist could not find anything that significant and attributed the diagnosis of acid reflux  as the cause, which is very common.

When I am the patient, I come in prepared for my appointment with a list of questions to make sure they were all addressed. I would have also kept the list from one appointment to another to make sure something is being done to find out what is wrong with me. And if it dragged on to too many times I was back in for the same thing with no change or resolution, I would get pushier and want more options.

With my medical background, I know you are never too young, too old, or too anything for a diagnosis.

I also know all medical personnel are busy and need to be told a story about a complaint. Don't say 'I have a pain', say 'I have a pain when I do this or eat this', etc. We need to make it easy for my doctors to get to the bottom of the problem. We don't need to share pictures with them or tell them about the rest of our lives. We need to give the  medical professionals as much information relating to our health problems to help them help us.

We should not be complainers but we should tell about our complaints so we do not end up like the patient in the story.

A busy week

I have a busy week scheduled. Some how, I have four doctor appointments, plus I need to work two days, go to the gym three days, and keep packing to move. Oh, and find a new place to live.

Tomorrow, Sunday, we are having our neighbors over around 9am so they can take a look at our house to see if they want to buy it. I am giving them first dibs because they are nice and I know they have been  house hunting for a while. But that means today I have to make the house look semi decent so they can actually look at it tomorrow. Then we are going to four open houses in the afternoon.

Monday, Wednesday, Thursday, and Friday I have doctor appointments. These are just a major time suck and I need to remember everything I want to ask them all (that means I need to start write them my questions down). And I need to get bloodwork done.

I think I am going to work Monday after my first appointment and then another day later in the week, maybe Thursday.

Oh, and did I say my back is giving me lots of pain these days? That could make me whiney.....