Oncology Anxiety

It doesn't matter how many years out it is but a visit to the oncologist always is uncomfortable. Its unsettling. Its alarming. Its distressing. Its ominous. I can't come up with enough words to describe it. And its today.

I had my annual mammogram back in July and then saw my surgeon. Technically, I am supposed to be followed by my breast surgeon for life after treatment ends. But his office was difficult to schedule with so after a few years, I dumped him. I also dumped my rads onc a few years back. She was pretty useless too. She used to tell me things like I should stop working so my husband could support me since I had had cancer. Not good medical advice.

I was originally supposed to see my oncologist after my mammogram but the surgeon took over. I had a momentary cancer freakout last winter and ended up at my surgeon's office. He told me his office would now start following me after my mammograms and had an appointment with his office scheduled for the same day. So my oncologist asked me if I wanted to see her office on a different date - to spread out cancer follow up appropriately.

Anyway, so I get to go see my onc's NP today. I am still on (or back on) femara for another couple of years. So today I am a little unsettled, alarmed, distressed, etc. You never know when you see an oncologist what they might find....

Damn.

Comparisons and Standards

Take two people with the same ailment in the same room and one of the first things they will do is start comparing their ailments, doctors and treatments. This is normal. (People who have not had the ailment are not allowed in these conversations because they will insist on comparing the treatment their cousin's hairdresser's neighbor's dogwalker's mother in law had for a similar but different ailment, was treated by a different treatment protocol, and then died after month's in pain in a greatly emaciated state.)

Its the same as two people who show up at the same event wearing the same shirt, they talk about where they got it and if they like it, etc.

I have other friends with either fibromyalgia, rheumatoid, breast cancer or thyroid cancer. I don't know anyone else who is lucky enough to have all four - I would like to compare with them. I have talked to each of them about what their treatment is, where they go for treatment, how often the see doctors, what tests they receive and all sorts of other things.

One friend was diagnosed with RA last year and goes to the same hospital as me but has a different rheumatologist and her medication makes her sick to her stomach. Another friend is 8 years into her RA diagnosis and she is on completely different set of medications but her RA has been under control for years  now. Mine is still uncontrolled but is slowly being tamed.

When I was at the Thyroid Cancer's Association's (thyca.org) annual conference when it was held in Boston a few years ago, I found I was probably the only person on the planet who did not have an endocrinologist. I promptly corrected that and now have another doctor for twice a year visits.

Some of my breast cancer friends have different follow ups than me. I see my medical oncologist twice a year because I still am on Femara. I see my radiation oncologist twice a year, but I think that will go to once a year shortly. I have my mammograms with my breast surgeon's nurse practitioner annually. If I was not on Femara I would stop seeing my medical oncologist. One appointment each year with a mammogram will be the long term follow up.

My rheumatologist's office sees me every three months for now and I  have blood tests every eight weeks. I alternate between a nurse practitioner and a doctor. I am not sure when that will slow down - maybe once my RA starts behaving itself. Other people with RA I think see their doctor less and I am jealous.

Finally I see my pain doctor for my bad back and fibromyalgia every 4-6 months. I have friends with back problems who do not have fibromylagia and they see their pain doctor about the same frequency as me.

This was a long way of asking what if this is not following standard protocols? There are standard national medical protocols set up by a variety of authorities which recommend to doctors on what kind of follow up is appropriate for patients. These change periodically and doctors are supposed to stay up to date.

I read a blog post recently written from the oncologist's point of view on how to tell a patient, their previous doctor was over treating them in their follow up for breast cancer. She cites one story of a woman who was eight years out from an early stage breast cancer diagnosis who was getting blood work and follow ups every three months!

I then tried doing some research to see where my treatment and follow ups fit in with the NCCN guidelines. I had to sign up but I feel pretty comfortable on my level of treatment. But that doesn't mean I won't stop comparing with my friends.

Accident update

Here's the damage. There is a possibility the car is not totaled but the garage says its borderline. I had a very busy day yesterday dealing with the accident details.

I went over to the garage where the car was towed with the intent of cleaning out anything of value and seeing if I could find my driver's license and eye glasses. My purse dumped out so I thought my license might be there. The airbag blew my glasses off so I was wearing a spare pair. When I arrived there the man who towed my car told me the other driver was arguing with the police when he was towing the cars.

I packed up all sorts of stuff in the car - my Aruba ice scraper, about $5 in change, mittens, hat, shovel, maps, CDs, etc. I found my glasses under the seat of the car. Then I realized I forgot my phone so I couldn't take a picture. I decided I would have to come back. My drivers license was no where to be found.

Then I went to the police station to pick up the report. The woman noted that it was very long. The part about me, driver 1, was brief. I was driving down the road and the other car pulled out in front of me and we collided and I was taken to the hospital.

The part about the other driver went on and on. She changed her story. She argued with the police that it was my fault. She told the police I needed to take responsibility for my actions. Her husband showed up and told the police how the accident happened (even though he wasn't there) and argued with the police some more. Then he wanted to know where I was and what hospital I was in and how I was doing. They had to explain the HIPAA laws to him twice. Driver 2 was cited for failure to yield and not having a drivers license with her.

I called our insurance company who said that if she was cited she would probably be at fault. And that not only do we have collision insurance we have medical coverage that will take care of all the medical bills incurred in my fun evening at the hospital. Yippee!

Her insurance company then called me. Driver 2 argued with her insurance company as well. I had to send them the police report. I like the part that she wants me to take responsibility for my actions and she keeps arguing with everyone that its not her fault.

Then I decided to go back to the car to take a picture of it, get the last of the CDs out of the console and find my glasses that I had put down while I was there. Stupid me.

I decided since my license was really missing, I would apply for a duplicate online. Then my husband came home and realized he had forgotten that the police had given my license to him - they must have found it in the car. Grr.

Lastly, the appraiser called last night and he is going to look at the car today and will let us know if its totalled.

Today I will also stop by the hospital and see if I can get a copy of my CT scan report to read the gory details about the arthritis in my neck. I still have a fat lip and some muscle aches and pains - in addition to my normal pains but am doing okay.

One last note is that when they took me to the hospital, I was wearing clean underwear which was bright pink and matched the polish on my toes which was visible through the hole in my sock.

Approaching the cliff

I have my own personal cliff that I am facing. And it has nothing to do with finances. Money isn't everything as the old saw might say. My cliff involves my health, as always. I don't think of my health as a series of cliffs in anyway. It is a series of disasters, appointments, and procedures, where I might feel a pinch.

But on Monday I face the breast cancer treatment cliff. I will stop taking Femara. That means my breast cancer treatment will end and I will go on my merry little way.... WAIT, BACK UP.... Cancer treatment can't end. I need to have my hand held for the rest of my life with this cancer shit.

Deep breath. Well if I am not in treatment any more they can still hold my hand. Can't they? I have been in cancer treatment continuously since May 2007. I have had surgery, chemotherapy, radiation, Tamoxifen, and then Femara. Through this whole process there has always been another step to look forward to. But not any more. I'm done! Yippee, oh shit.

On Monday my oncologist and I will discuss this again. She already brought it up when I saw her last fall. I thought I would be ready, I enjoyed the advance notice. I thought I was running out of pills a few weeks ago and even got a refill of Femara so I had enough to get me to my next appointment. I haven't even opened that bottle yet.

I know we will talk about how Femara has done a number on my bones and I may need some additional treatment to get my bone density back up to where it is supposed to be.

I know I will also continue to meet with the surgeon annually for follow up mamograms, the radiation oncologist for annual follow ups, and my primary care. And my pain doctor, rheumatologist, and all those other doctors so I guess I will get some care that will include some hand holding I hope.

But now I am facing the Emerald City at the end of the Yellow Brick Road through Cancerland. (Can you tell we wanted The Wizard of Oz recently? So what's in the Emerald city - healthy bones, healthy me, etc? Or is there just a little man behind the curtain running the world in front of the cliff?

And who is in charge?

I believe if it has anything to do with my health, it should be me because it is all about my body. But unfortunately that pesky cancer crap has a way of messing things up. At a cancer diagnosis, you get all kinds of new doctors - mostly oncologists and surgeons - and they come up with a plan of treatment which generally consists of a mixture of surgery, chemo, radiation, and adjuvant treatment (which is a fancy term for Tamoxifen or systemic treatment). This gave me a medical oncologist who is in charge of chemotherapy and adjuvant treatment, radiation oncologist for radiation therapy, and surgeon for surgery. I am still seeing them all. I also have an endocrinologist who I see annually for that other cancer stuff. But for how long do I get to see them all?

There is no standard plan for seeing doctors for follow up after cancer treatment as a rule.  It can be very confusing. The hospital I go to has some standard protocols which help. But if you get your care from multiple medical offices/centers, it can be confusing to the patient.

I was told by my medical oncologist that she wants to see me every 4 months while I am on adjuvant therapy - which is currently the generic form of Femara - until early 2013 and then probably for a bit after that but less frequently because of bone density issues. I see my radiation oncologist annually but will ask her at the next visit for how much longer. That will be four years since the end of treatment. I was also told my surgeon will be the one, or his nurse practitioner, who will order my annual mammograms with a follow up appointment with the NP for life. (This is the annoying part because they always screw up the scheduling and some how make me feel like its my part but that's another post.)

I also see my endocrinologist yearly to have my thyroid levels checked and the standard is an ultrasound every five years. I didn't have an endocrinologist for a long time. Then the standard of care changed and I ended up back at one a couple of years ago (and then there was THAT ultrasound, blah, blah, blah). I will see her for life as well.

In addition fit in a PCP who is currently following me every three months and a pain management doctor for life and the knee doctor and a dentist, etc. You get the point. I see lots of doctors. Some of them will never go away. I realize that but it would be nice to reduce the frequency of visits. Can I ever ditch oncologists and surgeons and turn my care over to my PCP? I am not sure. I think in another year or so both oncologists will be things of the past - I hope. I am stuck with my surgeon for now. I may develop an exit strategy but I am on the fence. They are my last specialized breast cancer care.

I guess I want to be back in charge of my medical care. Can it ever  happen again? Or maybe I just need to ditch a few doctors so I can stop going to all these appointments.

This is 'update the oncologist day'

I have decided a doctor appointment isn't a check up as much as keeping the doctor updated. Today I have a follow up with my oncologist. What has happened in the meantime since we last met? Fun and games with a mammogram last fall, back pain, hair regrowth and I have more questions for him.

In the business world, it is important to learn to 'manage up'. Don't let your boss set the expectations about you. You set your boss's expectations by doing what you are supposed to do correctly and keeping them informed. But also, by showing your willingness to take responsibility for and take charge over what you do, you can earn their respect of your credibility.

In the medical world, you have a primary care physician, and then if you are lucky like me, you also have a medical oncologist, a radiation oncologist, a surgeon, a back specialist, and physical therapist, not to mention a dentist, periodontist, and ophthalmologist. What is the lowest common denominator here? That would be me. I am the one who needs to make sure they are all informed about all my latest fun and games. I need to manage them.

Today I need to bring my oncologist up to date on everything. This means bring my lists and ask my questions and see what he has to say. I am also preparing a script for him to follow (I think if I keep trying this route, the doctors will learn their scripts sooner or later). This script basically goes along the lines of 'there is nothing to worry about, you are (basically) normal, and come back in six months or a year'. However, I have a feeling this could be more along the lines of 'lets run some tests, see you in three or four months'.

In the meantime, I was reading something interesting in the paper this morning. Medicine is no longer 'one size fits all' which is a very good thing. For example, men and women respond differently to different treatment plans. However this can go too far particularly in cases of standardized care, such as the example cited in the UK where a cancer drug was denied to patients as the government office had deemed it too expensive. Government agencies should not make medical decisions. That is my rant for this morning.

In the meantime, yesterday we started with some sunshine and ended up with a rainstorm, that turned to snow and froze solid. We now have a new glacier in the driveway. I am a weenie so I will ignore the glacier and drive over it to the gym because it is 23 degrees out and the wind is about 25-30 mph so the wind chill is sub zero. Then I will spend quality time at the doctor office - I get a blood test and then sit around for an hour before seeing the doctor. Then I get to go to work. Yes, I did my exercises twice yesterday and also this morning. My back only hurts moderately and I will go to the gym. How exciting is that?

Actually, we did have some excitement yesterday. We live behind some small apartment buildings and down the street from an assisted living facility. There are often fire trucks and ambulances around because of the assisted living. Yesterday I heard some fire trucks while I was working and basically ignored them until I heard some breaking glass. The fire trucks were because of the apartment buildings and the breaking glass were the firemen kicking in the back door of the building because it was on fire. Since we live near the town line, there were fire trucks from both towns. There was some significant smoke and then a repair truck was there for a while in the afternoon. I said to Walter 'the building next door is on fire'. He goes over to the window and says 'why yes it is'. And went back to his computer. I think the cat slept through the entire episode. So much for excitement.