Recurrence prediction 10 years out

The Oncotype DX test came around a while back which could help predict whether women were  likely to have recurrence of their breast cancer. This score is also used to suggest different treatment options.

Now there is another option using the ICH4 gene which helps predict recurrence during the first ten years after diagnosis. Most breast cancers recur during the first three to five years so having a test which can extend well past that time frame is a wonderful option.

I will need to have a conversation with my oncologist about this when I next see her.  I am sure I will get the same answer I always get - my criteria don't meet the requirements for the test. Often its because I had another cancer prior. Or because it has been so long since my diagnosis.


Crap, they don't know, I don't know either. I'm still here and that's what is important.

This lovely little video gives about 20 seconds on this test after you learn about exercise and migraines first.

I believe my cynical side is showing today. I'm going to the gym.

Doctor communication skills

Doctors need to focus on their bedside manner and also their communication skills. How hard is it to get hold of your doctor when you need to talk to them? This is important. I realize doctors are busy and they often call patients back after hours, long after dinner time.

A few weeks ago, I met with Dr P to discuss potential new ailments. I liked her and thought she was on the right track. I left all kinds of samples - urine, blood, xrays. Dr P said I should set up an appointment with her in 3 weeks that we could cancel it if everything came back negative. Then I would see her in six months and go from there. She said in the interim she would call me with test results.

A week after my appointment I called her office to find out about the 3 week follow up appointment. She is very busy so her secretary was trying to fit me in. Finally we left it that she would call me with the results and decide then if I needed to come in that soon. She was waiting to talk to the radiologist about my x-rays and hasn't been able to make contact with the radiologist.

Yesterday was yet another week so I called her office. Her secretary, who is very nice, said she would leave her another note. The secretary called back yesterday afternoon in the five minute interval when I was outside. She left a message that they were going to schedule an ultrasound and maybe an MRI as well even though the doctor hadn't made contact with the radiologist yet but with my test results that was the logical next step.

I said to myself 'what test results?' because I didn't have them yet. I called her back and said I had never gotten any test results. The secretary was surprised and gave me my results which are good and bad (meaning inconclusive) but the doctor still wants to talk to the bone radiologist...

The latest assurance I have is that they have scheduled an ultrasound for me in November which may or may not be cancelled and may or may not be followed up by an MRI. The doctor will call me probably Tuesday or Wednesday with results and a plan. I'm not holding my breath. She is a nice doctor and seemed very good but very hard to get on the phone!

New BRCA tests

New BRCA tests have been developed that are faster and less expensive than the ones done by Myriad Genetics. I think this is great news. Myriad has claimed they patented the BRCA genes but these new tests were developed in Canada so maybe they escaped the long arm of the law.

I had blogged about this before and Myriad was still waiting for a final ruling on their patent. The Supreme Court had thrown it out because they said the laws of nature can't be patented.  This I agree with. Now that a second test has been developed on the genes it reinforces this idea that the genes shouldn't be patented. How could it be that a single company could have power over women needing this test? This is where laws need to catch up with technology.

A test without a result

So yesterday was my long awaited, well not that long but it felt that way, EMG on my right arm to tell me what is wrong with it. The test is not what we call fun. First they take little metal things and tape them to your arm. Then they start zapping you to see how the nerves react. Sometimes they zap you ten times in a row in the same place. Then if that isn't fun enough a doctor comes in and does it again with needles to test your muscles. And they put all sorts of little dots on your arm with a sharpie pen.

Then they gave me the results. NORMAL. I am not normal by any stretch so I don't know how they got to that one. But this means that I do not have carpal tunnel or ulnar tunnel (in your elbow) issues. I do have tennis elbow still. I still have tingling in my arm and hands.

The tech who did the first half of the test said that arthritis could be a cause for this as well as the tingling I get in my lower left leg. This is not the first time that the arthritis word has been said. The doctor who did the second half of the test said there could be lots of reasons for tingling - lots of reasons is not helpful.

This is frustrating in that I wanted an answer to what is wrong with me. For once.

After leaving I called my primary care doctor to find out if she wants to see me or just talk to me about these results. I assume I'll get a call in the next day or two but still I have no answers. Grrr.

Once again I am in avoidance mode

I am not the brave patient all the time. Well not even most of the time. I have an inner wimp that comes out when faced with large crawly things, big growling dogs, and medical adventures that do not promise to be fun.

I have had tennis elbow for over a year and a half. More than 20 years ago I was told I have ulnar tunnel issues in my elbow. I also have tingling in my hand which is getting worse regardless of how much I wear my brace- all of this is in my right arm. (Which is a good thing if it was in my left arm they would not be able to do much of anything because of lymphedema.) Its not getting better after lots of watchful waiting (I hate that term) and brace wearing and exercises. Monday morning I am going to have an EMG to decide if its tennis elbow, ulnar tunnel, or carpal tunnel and basically decide how to fix this.

Have you ever had an EMG? Its not a fun test. They stick lots of needles in you and then put little electric jolts to see how your  nerves react. You don't feel the electricity - maybe a little tingling. But you do feel all the needle pricks.

I had an EMG five years ago when I was diagnosed with bursitis in my hip I got tingling in my lower left leg and foot. I had an EMG to see if there was anything bad going on and there wasn't and we weren't sure how to proceed. Then I was diagnosed with breast cancer and that was put aside for now. I still have tingling in my lower leg and foot and bursitis.

I was told to allow 1-3 hours for my EMG. I can't wait. Three hours of needles in my arm? How fun! Not. I'll suck it up and whine a bit.

Then in August I have another fun test that I am not ready to discuss yet. I am focusing on Monday's fun in an effort to avoid thinking about the next one.

I need an inspiring blog post

I haven't been very inspiring recently, not that I think I am that inspiring ever. Sometimes I wonder why anyone reads my blog at all but that is another story.

Its been almost five years since my breast cancer diagnosis. Am I supposed to have a party or something? I don't think so. I'm not doing much celebrating. I'm just not in the mood. I mean what is the significance of five years? Am I all better then? I was told breast cancer would take a year out of my life and then I would reach a new normal and life would go on. Well, it didn't really get to any new normal so my expectations for a life changing event at five years are some where in the basement.

Cancer swallows up your life and you learn to deal with it and continue to cope. But it never really goes away. So I keep blogging about my little medical misadventures. I am told people read my blog and like it (for whatever reason). Sometimes I hear that its nice to see someone who has lived for so long with cancer.

But then sometimes I hesitate to write about somethings. If I have been living with thyroid cancer for over 30 years but then all of a sudden need more tests, will I cause concern among others? Am I proof that cancer will doom us all?

No there is nothing new and significantly wrong with me that I know of. I survived my annual mammogram with no bad news or additional images required. But I didn't feel any big sigh of relief. More tests this summer. But that's nothing new. I always have more tests coming up. If its not one thing its another. I just have no inspiration to write about anything.

The rest of the medical adventures to skip - Part 2

More from choosingwisely.org on medical adventures to skip:

American College of Radiology:
- No imaging for uncomplicated headaches - just take a damn aspirin will you.
- No imaging for suspected pulmonary embolism without moderate or pre-test probability
- No preop or preadmission chest x-rays for ambulatory patients without history
- No CTs for evaluation in appendicitis until an ultrasound has been considered.
- No follow up imaging for inconsequential cysts unless over 1 cm

American Gastroenterological Association
- Translator needed for this one but I believe it means don't over medicate for GERD: For pharmacological treatment of patients with gastroesophageal reflux disease (GERD), long-term acid suppression therapy (proton pump inhibitors or histamine2 receptor antagonists) should be titrated to the lowest effective dose needed to achieve therapeutic goals.
- Colonoscopies only once every ten years if clean
- Colonoscopies not repeated for at least five years who have small polyps that were removed during a colonoscopy.
- Do not repeat endocscopy for at least 3 years with Barretts esophagus patients without cellular changes.
- CT scans do not need to be repeated for abdominal pain unless clinical findings or symptoms

American Association of Nephrology
- Skip routine cancer screenings for dialysis patients with limited life expectancies who are asymptomatic
- No ESAs to reach normal hemoglobin levels in chronic kidney disease patients
- No NSAIDs to patients with hypertension, heart failure or CKD.
- No PICC lines in Stage III-V CKD patients without consulting a nephrologist.
- Consult patients, families and physicians before starting chronic dialysis - a group decision

American Society of Nuclear Cardiology
- No stress tests or coronary angiography on patients without cardiac symptoms unless high risk markers are present
- no cardiac imaging for patients who are at low risk
- No radionuclide imaging as part of routine follow up in asymptomatic patients.
- No preoperative cardiac imaging as preoperative assessment in patients before  low or medium risk non cardiac surgery
- Reduce radiation exposure in cardiac imaging tests including not performing tests when limited benefits are  likely

After having read all these (and written them down) my thoughts are I am happy to see these recommendations. If there is no need, why are they running the tests? Just because a new test comes along and it shows some benefit, if over time, the becomes proven that there is no real benefit, why do we keep running it? If a patient has no symptoms why do they need a test?  We have all been trained by our doctors to expect test after test or magic pill after magic pill. But maybe just go take an aspirin and wait a few days. And a headache doesn't mean its a brain tumor.

Juggling the patient's peace of mind vs. costs vs. over diagnosis can be difficult but if in the long run there is no real benefit, feel free to skip my tests, thank you.

More medical adventures to skip - Part 1

More medical specialty societies have created lists of "Five things Physicians and Patients Should Question" - Thank God I found a copy of this list that was NOT in the format of a list of pictures and graphics so we don't have to read. The media believes that the average American can't read and needs lists of things and images to flip through so we can understand what they are saying (One of my new pet peeves - write down letters and words instead of pictures - I don't even need to run my finger under each line to follow along, nor do I sound the words out as I read. We are also so stupid we need to have the same stories over and over again reported down to a microscope level long after we couldn't care less any more.)

To see the  lists yourself, go to choosingwisely.org and click on the lists link on the top which provides more details than I can decipher. But here is a summary:

From the American Academy of Allergy, Asthma & Immunology: \
- Don't perform unproven diagnostic tests.
- Don't order sinus CT or indiscriminately prescribe antibiotics for sniffles
- Don't do routine diagnostic testing in patients with hives
- Don't recommend replacement immunoglobulin therapy for recurrent infections unless there are poor responses to vaccines.
- Don't diagnose or manage asthma without spirometry - in other words do not assume

American Academy of Family Physicians
- No imaging for low back pain in the first six weeks unless there are red flags
- Don't routinely prescribe antibiotics for a cold unless the symptoms last longer than 7 days or worsen
- Don't use DEXA screening for bone density in women under 65 or men under 70 with no risk factors
- Don't order EKG's for patients without symptoms
- No pap smears on women under 25 or who have had a hysterectomy for non-cancerous reasons.

American College of Cardiology
- No stress tests or advanced non invasive imaging in the intial evaluation of patients without cardiac symptoms unless high-risk markers are present
- No annual stress tests of advanced non-invasive imaging in routine follow up on patients with no symptoms
- Do cardia imaging or stress tests as a pre-operative assessment on patients as part of low-risk, non cardiac surgery
- No ECG as routine follow up for adult patients with no symptoms
- No stents unless specific criteria met - must meet the big word description that I don't understand.

American College of Physicians
- No stress tests on patients with no symptoms and who are not at risk for coronary heart disease.
- No imaging studies on patients with non-specific low back pain.
- No CT or MRI of brains unless symptoms are present.
- Use D-dimer measurement as initial diagnostic step for VTE and if negative, no more tests are needed.
- Skip the preoperative chest x-ray unless symptoms are present.

I see some repetition here. I bet many of these were ordered as a CYA move to prevent malpractice law suits based on recommendations from the doctor's insurers.

More tomorrow

They did it again

Once again, they changed their mind. This is the proverbial 'them' who create these vast conspiracies to oust political candidates, were the ones who really broke the window, or the the ones who change medical standards. Yes, more medical standards are changed in a vast plot to confuse the patients. Now we do not need annual pap smears, one every three to five years, depending on age and who you listen to.

In the 1930's they started suggesting annual pap smears as cervical cancer was the number one killer of women, more than breast cancer and lung cancer. Now only 4,000 women are died of cervical cancer and most had never been screened for cervical cancer or it was more than ten years prior.

I am confused. If women who aren't screened are the ones who are dying of cervical cancer and the women who are screened are not dying of it, why don't we need to be screened. Doesn't this put us all in the category of being unscreened or potentially dying of cervical cancer?

The suggestion is that if a woman has normal pap smears for three years can go to once every three years as it is a slow growing cancer. I'm all for less testing but don't we all need some testing? I don't know, I am confused. I'll have to think about this one for a bit.

It is a balance

When we are sick, hurt, or in pain, we are trained to rush to the doctor and say 'heal me, cure me'.  The doctors are trained to examine, test, treat, and prescribe. And to avoid potential malpractice, they test, treat, and prescribe some more. I admit I am one of the people who is quick to run for treatment (am I a hypochondriac these days?) when I have an 'owie'. But I try to slow myself down.

I went to the doctor for my shoulder in early September because in mid-July I caught the corner of my car door in my shoulder which was extremely painful and bruised a week later but slowly got better so I ignored it. Then it started hurting again to the point that I spent the last weekend in August with ice on my shoulder for three days. At that point I was ready for a bit of medical attention. After an x-ray the diagnosis was I had done something to my shoulder and it was probably almost healed and then I overused it. I was told rest it some more and keep icing it. It is slowly getting better. I have enlisted help at the gym to tweak my work outs to help heal it and not re-injure it. There was a momentary flash of disappointment at the doctor's office that there was nothing else to be done. Did I want/need a prescription, test or procedure? No.

I am also 'discussing' my blood pressure/pulse issues with my doctor. We have currently agreed on a little more testing and if it is all normal I will get another medication. A lot of people think blood pressure medication is no big deal. But to me it is. I already am on five daily medications - two for my back, one for my well-being/sanity, one for my thyroid, and one for post breast cancer. I don't really want another one. If I could ditch them all I would. And balancing them is complicated. I take two pills when I wake up. I have to wait an hour before I can eat and take another round of pills before leaving for work. When I get home or at least four hours later I take my vitamins. Finally at dinner time I take another round of pills. If I add another one to the mix I will have to figure out a new schedule because some things need and empty stomach or a full stomach or can't be taken with other things. Its a balance I try to maintain and every new pill requires rebalancing.

If a doctor prescribes rest, lifestyle changes and a wait and see approach, I am happy to leave their office with those recommendations. I dislike the need for tests, procedures, and other medical adventures. Apparently there is a term in medicine for this called 'clinical inertia' which has some negative overtones. I don't think its negative. Tell me there are not millions of parents out there who are delighted to take their screaming, feverish child to the doctor and be told that it is a cold and will go away in a day or two and doesn't require antibiotics. Find me some patients who aren't happy to go to the doctor about a concern and are happy to be told that it will go away with rest and ice.

I would rather have clean x-rays than another medical (mis)adventure. I think Americans tend to be over treated in many areas. Too many antibiotic resistant infections are the result of over-prescription of antibiotics. Too many tests are ordered in a rush to get a diagnosis. A little more inertia or 'wait and see' might not be a bad thing for all of us.

This morning I am in avoidance mode

I am in avoidance mode this morning. I am scheduled to have an endoscopy this morning. An endoscopy is not a big test. They put you to sleep and stick a camera down your throat to look for bad things - mostly to tell you how bad your heart burn really is.

I was very concerned about the idea of a camera down my throat because I googled it and read all the descriptions of what they do. Then I asked my husband how it was when he had one - and he said it was no big deal. I also asked the nurse who called to ask me all the questions and she said they put you to sleep and you wake up and its over. So that is now okay.

But with my medical history, they have to be sure. Which always scares the crap out of me - because of my medical history and needing to being sure. How many bad things are found in routine tests? Have that happen a couple of times and then see how calm you are. And my doctor called last night to confirm why I am having the test she ordered... Does she need a reminder?

So here is my day so far. I couldn't sleep very well and the cat wanted to get up at 5 so I did. He didn't want food or to snuggle, he wanted, the indoor cat, to go out. Now I am wasting time on line. I did slightly redesign my blog. The cat is now napping by my feet. I would like some breakfast and am extremely thirsty - but only because I can't eat or drink for six hours prior. I did cheat and have more than a tiny sip of water with my morning prescriptions and just had a second not so tiny sip of water with my second round of morning prescriptions.

Sooner or later I'll stop dawdling and take a shower and brush my teeth. I find humor in the fact that when they talk about prep for these procedures, they always stress brushing your teeth. I hope at the end of the test they tell me they found nothing too interesting and I get to take it easy this afternoon because I was sedated and am not allowed to make important decisions for 24 hours. Maybe my husband will decide whats for dinner. Tomorrow morning I go back to my doctor and we get to talk about all the uninteresting things they found. I have an hour before I have to leave but I'm not ready to take a shower yet so its time to turn on the TV.

My medical advice

I have decided that it is time to share my medical advice - garnered from years of being a patient. I never went to medical school and still close my eyes any time a needle is near but I do have my opinions (of course I do, if I didn't have an opinion I wouldn't have anything to write about in my blog).

- Medical advice from your doctor is in the same category as speed limits. It is your choice to heed them but if you don't you may end up paying a price. I do listen to my doctor and usually follow their advice but sometimes do not and then I tell them about it. If you just ignore the speed limit and your doctor's advice you may end up in a different category - dead.

- Hospitals are no place to get any kind of rest or personal attention. They are places to get poked and prodded and monitored and finally, luckily, you get sent home.

- The biggest lies in the medical industry are: 'you might feel a pinch/pressure/discomfort for a second', 'after a short recovery, you will be ready to go home', 'most people experience improvement within 24 hours'.

- The things they don't tell you before surgery or other medical adventures: how much pain you will be in, how long until you feel like your old self, and what your scar will look like.

- The more medical adventures you have the less modesty you retain.

- Your insurance company will always try to interfere with your medical life in someway - by when you can refill your prescription, which procedure you are privileged to have, and when you can see your doctor.

- You need to be armed for every doctor visit with your list of medications, list of questions to ask, and sometime to occupy your time - book, newspaper, etc - while you wait. The less you have to occupy your time, the longer you will wait bored out of your mind.

That is the sum of my medical knowledge. I am happy to share. If you have anything else to add, please let me know.

To screen or not to screen

Well they finally figured out that they can't detect ovarian cancer in regular screenings. In fact the women who were screened had false positives and surgical complications as well as more deaths than the women who weren't screened. Oops. So I'll scratch that one off my list.

An annual mammogram, I can do that. A colonoscopy every ten years, I can do that. My husband who had that bad colonoscopy followed by surgery says he would rather have an annual colonoscopy than surgery again. I think prostate cancer screenings are up for debate these days. Annual skin checks I can cope with as well.

After one cancer diagnosis, never mind more than that, you get privileged to get every regular cancer screening there is. Because 'with your medical history, they need to be sure'.

Granted once you get on the cancer roller coaster, its too easy to over react to 'with your medical history we need to be sure' and start saying 'well I had cancer before, I need to make sure I don't have it again'.

But when talking with your doctor about a potential health issue that 'with your medical history they need to be sure', its a balancing act. I mean if they don't test and you have something, what if they catch it too late? Or do you need that extra trip on the cancer roller coaster as well as expense to get a negative test result?

But the point is that you should talk with your doctor. I like the times when my doctors tell me the normal protocol is this and there is no reason for anything more. I dislike the 'but with your medical history, we need to be sure' so here go some more tests and medical adventures.

The media plays a big part in the emotional roller coaster. If you listen to what the media tells you, you will be running from doctor to doctor, and eating red meat this week but not next week and upping your vitamin intake last week but switching to new supplements. Never mind that it seems that the media either reports on medical breakthroughs that are in the mouse-test stage or ones that aren't news because they have been around for a while.

There has never been a medical breakthrough that I learned about in the media that applied to me and was appropriate. My thought is to ask my doctor and skip the news reports.

My annual medical hell day

In a few weeks, I will have a 'wonderful' day. It starts at 8am with the back pain doctor, followed by a mammogram, bone density scan, annual physical, annual surgeon follow up, and something else I can't remember. And my primary care will probably send me back down to diagnostic radiology for a chest x-ray and for some blood work. On that day, I will probably get to get in and of a hospital gown at least 5 times. Maybe I should just show up in my pjs and a bathrobe and stay in them all day. How many follow up appointments will all those generate as well? I think I spend my life going to doctor appointments.

Later today I have an MRI on my knee. Apparently if you need an MRI, the best time to go is on a holiday because no one wants to have an appointment then. I did ask if I wore clothes with no metal did I have to get changed into their metal free clothing and they said I would still have to change. Darn.

I think hospitals could save a lot of money if people could just show up in their PJs and not have to have all those gowns washed all the time. Think of this as a whole new fashion line, medical gowns that you can wear to and from the hospital. The problem would be that some doctors want the gown to open in the front and others want it to open in the back - depending on which part of your body they want to examine.

In the meantime I have homework, I have to prepare my lists of questions for all these doctors and print out multiple copies of my current medications so everyone can get their copy. I shall also summon up my inner three year old and ignore the fact that my hell day is looming.

Back pain and tests

It turns out there was a study (like we need another study) that says back scans can find things that aren't causing pain. Well, I know medical scans can find all sorts of thingys (very technical I know) that are there inside our bodies but don't mean much.

I happen to know I have a thingy in my lungs that has been there and is stable for about 30 years - and I have an annual x-ray to prove it. I also have a couple thingys (also known as hemangiomas) on my liver. They are just fine. They can hang out but they won't kill me.

Most people's backs are not perfect. Heck, most bodies aren't perfect. (If you have a perfect body, let me know and we'll figure out how you can become a fashion model or professional body builder or something.) Now we have these high tech procedures and tests that uncover things that may or may not mean anything.

Two-thirds of Americans suffer back pain at some point and for most it will go away with treatment within a month. I passed that point a long time ago. When my back started hurting (which I documented here - the (delicate, feather weight, 15 lb.) cat sat on my stomach and made my back hurt November 29, 2008. After living on Advil for a month I went to the doctor who sent me for an x-ray and then to another doctor who sent me for PT which didn't work and I ended up in the pain clinic with an MRI which found degenerating disks.

So in my case, the MRI found out something that was important. But just because a test finds a thingy, don't jump to conclusions. Remember, our bodies aren't perfect, 80% of breast lumps are benign, and sometimes we just hurt for insignificant reasons - like stubbing your toe or something.

A tiring day as a patient

Yesterday I had an event filled day. I must say the evening before there was a little bit of snow and my husband who had not seen the need for four new tires on the car, after a sliding backwards event, agreed that tires were needed.

I said I would call about getting the tires in the morning and see if they could put them on in the morning. I called the tire shop at 8 am when they opened and got someone who said they had two and would call me back if they could get all four and install them.

Then I went off in the car with the bad tires to PT for my (damn) tennis elbow. Over the weekend, I found the skin on my elbow was all red and irritated and raw from the treatment - he does ultrasound, massage, and then some weird thing with electrical impulses pushing some prescription medicine into my elbow. Evidently the adhesive has a similar reaction on my skin to paper tape...

Then I went off to the ankle doctor to find out if there is anything that can be done for my ankle or am I doomed to have a swollen, sore ankle for the rest of my life? The answer was an MRI to see if anything has changed since the last MRI in January. If it has, maybe surgery. If not. I am doomed to have one fat(ter) ankle. I told her she said the wrong thing, she was supposed to snap her fingers and fix everything. She said she would look for her magic wand. I just want something that gets better.

So I went to scheduling and took the first available MRI - it was at 2:15AM this morning. I took it. I will the doctor in a few weeks to find out the results.

From there I called the tire store and the smart guy who runs the place said they had the tires, they could put them on, and have the car back for me by 3pm. I dropped the car off and walked home with my bag of prescription I had filled in the AM, two loaves of bread and some prosciutto for Christmas dinner in a bag. That damn bag got really heavy. I had a choice of carrying it on tennis elbow arm or lymphedema arm. I got smart and stopped at the chocolates store and got two shopping bags to split the load.

Finally at home, I did some work and relaxed until I walked back to the tire store, with no packages, and went back home, until I had to leave to see my therapist at 345pm so back to the hospital, again. She thinks I am doing fine (and am relatively normal in case you are wondering). But in terms of upcoming stressors, there is that damn ultrasound next month to worry about but I will stress about it next year so I may be less fine and less normal then. So back home, made dinner, went to bed early so I could get up at 1:35AM to go for my MRI.

I went back to the hospital for the third time in 24 hours and pulled into the main parking garage, parked in one of the million empty spaces which was right near the stairs. Then I walked down and over to the hospital and found a sign that the main doors were locked from 12-5am and I needed to enter through the ER - which means parking in the little ER lot, which is free, and saves me 10 minutes of walking through empty hall ways. Back in the car, I drove around and parked and went for my MRI. I got a nice nap while being MRIed(is that a word?). I then came home at 3:30 am and went back to bed but didn't sleep well. Which is a good thing since my husband had set the alarm to wake me up at 130 in the morning and then reset it for getting up as we usually do around 5. But when we did get up, he found that the alarm was not set and the clock said it was 9am. (Moral - do not attempt to set an alarm clock in the middle of the night.)

I am now awake - mostly but not completely. I will leave for work shortly but am not going to get in as early as I had hoped. This means tomorrow morning I will be there bright and early so I can do the planned database updates.

Tonight I am going to bed at 8pm to recover from a day of being a patient. I only had 3 appointments within an 18 hour time frame. I am exhausted from being a patient.

Face it they were stupid

One year ago there was a lot of hoohah about mammograms not needed for women in their 40's. (Hoohah is a highly technical term for a too much media coverage upsetting a lot of people.) It was then that the morons (and I use the term loosely) said that mammograms were not needed until age 50.

Well, in the year since, we have learned that they were wrong. But there are still some sore feelings. Women feel misled and confused. Will my insurance cover the screenings? This was one of the many questions asked.

It now shows that these people who came up with this statement were stupid. They didn't explain clearly and by the time they went back to clarify it was too late. They were stupid.

In the meantime, we have learned not to believe everything you read or hear. And that just because one study tells us one thing, it doesn't mean it was correct.

Hypochondria or not

Am I turning into a hypochondriac or not? I can't decide. If I go to the doctor for every ache and pain because of that niggling little 'what if', then when the doctor says 'its normal' I feel like I am turning into a hypochondriac. I will say when I do go to the doctor and say 'I had cancer twice' then they say 'with your medical history, blah, blah, blah, blah, we need to be sure' and send me off on the merry go round of tests and more doctors. It doesn't help that every time I go to the doctors I print off a new copy of my ever growing/ever changing list of medications I take regularly which just reinforces how much of a pill popper I have become.

Yesterday's doctor said I am normal (although my husband may dispute this fact) and any more pains should be reported to my PCP (lower right abdominal pain issues and we have ruled out my appendix and ovary as causes) for further testing. (But what if I choose just to ignore future abdominal pain as being normal or just things I need to deal with as a result of two abdominal surgeries?) I guess I was assuming she would find something so when she didn't I left feeling like Chicken Little - and a hypochondriac. Maybe I am sick of going from doctor to doctor and test/exam to test/exam. There is some sense of relief and reassurance when they do find something because (a) you are not crazy, there really was something wrong with you and (b) you don't have to live with the mystery of what the hell is that and you can move on to 'let's fix it stage'.

Anyway, so one doctor appointment out of the way. On to more fun and games but first I need to get my butt out of bed and get to work this morning. I will end with a quote from my husband:

'Its not paranoia if they really are out to get you so its not hypochondria if you really have lots of stuff wrong with you.' I don't know if this is reassuring but it is funny in a sick way.

I have a love/hate relationship with articles on change

I think that change needs to be viewed as a good thing but sometimes it can be difficult to accept. So this doctor wants to rethink how older cancer patients are treated. Well, it sounds reasonable and probably represents some kind of progress medically and a way of reducing costs while increasing quality of life.

But (of course there is a But here), what if you received the older course of treatment? What do you think now? In this case, do you feel you were over treated and put through unnecessary stress and costs? This is just one example. What if they changed the protocols for the chemo therapy you had? Do you feel over or under treated? I think the chemo regimen I underwent three years ago has since been tweaked and is similar but not the same. I am okay with that. But what if it had been completely thrown out and redone? How comfortable would I be then?

The road to hell (and a nervous breakdown) is paved with regrets and what ifs. I think that we can't allow ourselves to wonder what if we had a different course of treatment?

The current standard follow up for thyroid cancer includes full body scans and thyroid ultrasounds every few years. This was not the case back when I last saw an endocrinologist so when I went back to an endocrinologist this year she sent me for an ultrasound where I received less than stellar results. If I had kept my mouth shut about seeing an endocrinologist, would I feel better now but could it have had long term implications?

I think I need to keep thinking that change is a good thing and will help me in the long run.

We are in the middle of a heat wave here. Monday we went sailing to hide from the heat - the whole family except my brother in law. Yesterday we went to the beach in the morning - my brother and three kids. Last night, we installed the air conditioner (with lots of accompanied swearing - move out of the way damn it) and slept in a downstairs room in air conditioned comfort. (The cat slept on my pillow in front of the AC.) This will be repeated until the weather cools.

I am about to go for a walk before it gets too hot. Then I will do some work in my 'summer office' - the finished basement room which is nice and cool. We live outside Boston where many people do not have AC simply because usually at night the temperature rarely stays about 70 so its good sleeping weather. In this heat wave, it is in the low 80's when we get up and reached 100 yesterday. So basically I will go live in the cave of our basement today.

Its different for everybody

Yesterday I went to the doctor with a friend who was just diagnosed with breast cancer. She goes to a different hospital than I do. I found it interesting how different the treatment plans were for her vs. what i received. Some parts were the same but some were different. Her recommended chemotherapy is the same drugs administered differently than what I received. She is having more tests that I ever did before surgery. Needless to say, it was educational. It was nice not being the patient for once, and to be the support person and writer for answers to all her questions. It just reinforces that everyone's cancer is different and is treated differently.

Today, I get to call and deal with my appointments. Sometimes I think they do these things just to confuse us patients. (If we are confused, maybe we can't complain as much.) I have several different doctors who want me to come back and see them. Some of them say come back in X months and immediately you get a little reminder in the mail saying the date of your follow up appointment. Other doctors you never seem to hear from with a follow up appointment. The surgeon wants me to come back in December as a follow up to my June appointment. I called to ask and they said they aren't scheduling December appointments yet but I should have the date sometime in September. One of my other doctors wanted me to come back in October after my June appointment. I didn't hear anything and didn't worry about it. Then I was talking to her office and asked about the rescheduling and apparently they missed the note and now she doesn't have any openings in October so I go back into see her in September instead. So now in addition to remembering when I am supposed to go back and see my doctors, I also need to remember which ones schedule months ahead and which ones work on short notice.

I also have a follow MRI in a couple of weeks. When I scheduled it, I was told I needed a blood test due to the contrast agent and should go down to the lab to have it done. So I went. But inthe mail yesterday I received a reminder to go for my blood test. Now I have to call them and find out if I need more blood work. Grr. More confusion for us patients. Just to keep us on our toes.

Today's big excitment is I am going for a walk before working at home and going to my support group. How is that for an exciting life? Maybe its time for more pictures of the garden or the cat.