My Miracle Drug

Endometrial cancer is an estrogen-dependent tumor. So conservative treatment focuses on creating an environment that is high in progesterone and thus low in estrogen.  I am being treated with megace (megestrol acetate), a synthetic progesterone. I take it by mouth. On March 2, I started megace at 40mg twice a day. About 2 weeks later, I had done a lot of research and learned that most patients take either 80mg twice a day or are increased to 160mg twice a day.  At that point I had not had any side effects and figured that the higher dose could only help beat this thing. I emailed my doctor and her PA and we increased to 80mg twice a day. After my procedure in June showed complex hyperplasia with atypia, the dose increased to the max, 160mg twice a day.

There are other oral progesterone preparations that can be used. Additionally, a progesterone IUD can be inserted but there is not a lot of data on this yet. The benefits of the IUD are that the effects of the progesterone act locally on the uterus but there are fewer systemic side effects than when you take progesterone by mouth.

Fewer side effects would be wonderful. I have had a lot and I will tell you about them. I think I mentioned before that megace is used in advanced cancer and AIDS patients as an appetite stimulant to make them gain weight. I now understand why.  At first I didn't really notice an increase in appetite. When I started the medication last March I was determined not to gain weight. I bought a scale and A LOT of cucumbers and celery.  I worked out as much as my crazy schedule would allow. I still gained weight gradually. Until I started the max dose...  Now it seems like no matter what I do, the numbers on the scale just keep going up.  And it's significant - I am up 25 pounds!  I have had to buy all new clothes.  And I have definitely noticed the appetite stimulant effects. All I want to do is eat and eat mostly sweets.  I have always had a sweet tooth but this is extreme!  I do my best to avoid them and try to let a tiny piece of dark chocolate satisfy the intense cravings. It is not easy.

In April, I started to have heartburn frequently.  It got worse and worse.  It kept me up at night so that I was trying to sleep sitting up.  It made me nauseous throughout the day.  The only foods that tasted good were burgers and salty things like pretzels and pop chips.  My primary care doctor started me on heartburn medication that didn't really help. Then she started me on a stronger one, prilosec, and it helped a little.  We increased the dose to twice daily and it helped a lot.  Now I only have heartburn occasionally but I am still taking prilosec twice a day!  Also in the GI system... constipation.  I have never been the most regular person in the world but on this medication it got a whole lot worse.  With lots of fiber, a stool softener, and a strong probiotic I have it mostly under control these days.

Exhaustion...  Last spring I was definitely feeling a little more tired than usual but it is hard to sort out when you work a resident's hours.  By the time I maxed the dose of megace I was tired all the time.  When I reworked my schedule so that I could sleep in (instead of getting up at 5ish) and take naps when I needed to, I felt a world of difference.  If sleep is what I need to beat this, then I will sleep!  Except when I can't...  Off and on I am up half the night and nothing seems to work to get me back to sleep.  Reading, solitaire on my phone, going downstairs to watch TV, etc.  Since I maxed the dose, I wake up in the middle of the night, EVERY night and have to pee (urinary frequency is listed as a side effect...) which contributes to my tossing and turning.

I have crazy blonde (ok not as blonde as it used to be) curly hair.  My husband has always given me a hard time for clogging the drain but these days the hair in the shower seems to have doubled.  I run my hands through my hair and out comes a lot.  At least my hair was always thick so I guess I had some to spare.

Have you heard of a "buffalo hump"?  It is a hump between the shoulders, just below the neck.  People on steroids (like prednisone) often develop this.  Mine started last summer.  I think it is because progesterone is a steroid hormone.  It's nothing a turtleneck or big sweater can't cover but it's not my favorite part of my new body.

There are other scary side-effects that I have not experienced, thank goodness.  Things like blood clots, changes in vision, horrible headaches, etc.  But as you have probably gathered, this medication is kind of kicking my butt.  I am willing to do pretty much anything for the chance to have a child so I have stuck with it but I do not want to be on it any longer than necessary.

Getting Back Into It

I am sorry that I have not blogged since my procedure in June.  I know that I probably left you hanging without giving you the results.  Before my D&C last June I was really optimistic.  I really hoped (and to some degree thought) that the cancer would be gone and that we would be able to move on with fertility treatments.  The carcinoma improved to complex hyperplasia with atypia but this was only a small step in the right direction. 

After that I was really down.  I was working crazy hours, 12+ hour normal days plus up to 24 hour in-hospital calls.  I just couldn’t handle it all.  I would randomly start to cry.  I started a rotation on our in-hospital pain service and had to round on my doctor’s patients, many of whom had just had hysterectomies.  This was not good for me (although our epidurals managed their pain well).  My husband and I talked a lot and decided that I needed to make some changes.  This was not going to be a quick, easy process.  I needed to take care of myself and give us the best possible chance for me to get better and for us to have children.

So I made a lot of changes.

First, my program director and chief residents helped me reorganize my residency schedule.  I stopped taking call.  The prospect of spending every night at home in my own bed was therapeutic in itself.  I would also have weekends to rest and spend time with my hubby.  With the help of an amazing co-resident, I worked half days for the rest of my month on the pain service.  I went in at noon and left around 5-6.  I was able to get sleep, exercise, and make healthy meals, most of which are not part of a resident’s average day.  After July, I started to do research time instead of clinical time.  This allowed me to work from home, make my own schedule, and really take care of myself.  I knew my next procedure and news would be at the end of September so I scheduled research until then, with the option of adding additional time afterwards. 

Second, I explored other options to take care of myself.  I saw oncology nutrition and incorporated their suggestions into my diet.  I started acupuncture treatments.  I read a book on meditation and started practicing.  I have always tried to exercise consistently but my schedule did not always permit it.  With more time on my hands I went to yoga and spinning classes frequently and spent time at the gym otherwise.  I was not sleeping well, occasionally being awake for hours at a time at night, so I let myself sleep in or take naps when I felt like I needed to. 

It is now the end of January and I am “hanging in there.”  After the June procedure I doubled the  megace dose to the highest level.  I had another procedure in September that came back as complex hyperplasia without atypia, another small step in the right direction but not normal.  And another in January that just came back as a small amount of atypical glandular proliferation.  Per my doctor this is close to normal, but still not normal.  We are not clear for fertility treatments but I am continuing on hormonal therapy with megace.

I think blogging helps me organize my thoughts and emotions so my goal is to get back into it.  I also hope to provide insight for others who battle this disease.  I will try to fill you in on the events of the last few months and keep you posted as we go forward.  

Being a Patient

I had surgery yesterday.  It had been 3 months since I started the hormonal therapy so it was time to get an update on whether we were making any progress with beating this cancer.  I was nervous all week, not about the surgery (well a little about the surgery) but mostly about having surgery done in my hospital where I know all of the staff in the operating rooms – the nurses, anesthesia residents, nurse anesthetists, attending anesthesiologists, etc.  We had planned for the surgery to be in the outpatient operating rooms which are smaller with less staff and I thought they would be a little more private.  I picked which of my attendings I wanted to be my anesthesiologist and she had agreed.  

The surgical procedure – a hysteroscopy (they put saline into the uterus and look with a camera) and dilation and curettage (D&C, they scrape the lining of the uterus) really isn’t that big of a deal as far as surgeries go.  But when it is you, of course it is a big deal.  It only takes about 30-45 minutes but the surgery is scheduled for longer to include anesthesia time.  Sometimes this can be done under heavy sedation but sometimes general anesthesia.  I had been instructed to stop the megace one week before the procedure.  

Three days before the surgery, I received an email from my doctor’s surgical scheduler that my surgery had been moved to one of the main operating room suites.  I was totally upset and frustrated.  Three months before we had planned for the outpatient operating rooms and I had just gotten used to that idea.  I asked her if it would be possible to move it back to the outpatient ORs but ultimately that wasn’t possible.  Also, because they moved me from an early morning case to a late morning case, the anesthesiologist I had chosen was not able to do my anesthesia.  She had offered to come in on her nonclinical day just to do my case but had an appointment in the early afternoon that she couldn’t cancel.  I understood, but this was just more frustrations to deal with the day before surgery.  

My middle sister had been planning to visit for the weekend and when she found out that my surgery was Friday, she came on Thursday night instead so that she could support us and help out if we needed anything.  

Friday morning I think my hubby was more nervous than I was.  I am sure I would freak out if he was having surgery also.  We had to be at the hospital at 9:30.  He went out and bought me People and US Weekly so that I could read all the newest gossip and distract myself while we waited for the procedure.  We parked in my parking garage and checked in on the patient side of the ORs.  I had been on the other side hundreds of times but didn’t even know where to check in as a patient!  

First, they took me back to the prep area by myself.  They took vital signs, had me provide a urine sample to make sure I wasn’t pregnant (sigh…), and had me change into the super cute gown with compression stockings (prevent blood clots) and footie socks.  Then they put a big (!) IV into my left arm and finally let my hubby and sister come back.  Thank goodness for gossip magazines because it had probably been an hour before they were allowed back. People I knew were walking by so I kept requesting that they close curtain for a little more privacy.  We spoke with the anesthesia team (another attending who I felt very comfortable with and a nice female nurse anesthetist), the surgeons, and the nurse from the OR.  About another hour after my hubby and sister had come back (I had been through US Weekly, People, and a lot of games of solitaire on my phone by then), they wheeled me back to the OR, after giving me medicine to make me less anxious and a little loopy.  I remember moving onto the OR table but that’s about it until I woke up in the recovery room, after general anesthesia.

I had a nice nurse in the recovery room.  I woke up with some crampy pain but he gave me pain meds that helped quickly.  No nausea though!  He brought my husband back pretty soon after I had woken up.  Apparently my hubby explained everything the surgeon had told him but I don’t remember much of it at that point.  He stayed for a little while, and then left to let my sister come back.  I moved out of the stretcher into a recliner and they let me have apple juice and crackers.  

My sister and my hubby switched again.  The anesthesiologist and the nurse anesthetist both came to check on me.  The surgeon came to tell me about the procedure also.  About an hour later, I had peed (required before I could leave), drank 2 cups of apple juice, and ate a whole bunch of crackers.  I wasn’t bleeding too much and was only a little groggy.  One of my co-residents came to sign me out of the recovery room and my hubby went to get the car while I got changed.  I was annoyed that it is a requirement that post-surgical patients leave in a wheelchair (I didn’t want to wheel by people I knew down in the lobby!) but I got through it without passing too many familiar faces and hubby was waiting in the car.  

The surgeon told us that everything went really well.  There was some large polypoid tissue that she expects in patients who have been on progesterone (my megace).  She showed us pictures.  There was some bleeding but it stopped easily.  She told me to restart the megace the next morning.  She would get the results in the next week and they would discuss my case at their next tumor board conference the following Friday.  I should schedule an appointment for the following Wednesday or Thursday to get the results and the plan.  

So we have to wait a week and half for the results…  I am tempted to peek on our electronic patient record system before then but I will hold myself back.  I will keep you posted!

Why Me?

I promise that this blog will not be a 'woe is me, I have cancer' experience. But I do think that I deserve one post like this.

Why me?  Why us?  Infertility was devastating enough, now uterine cancer?  I am a good person. My husband is a good person.

I have always worked hard. I try my best to take care of myself, eat well, exercise. I take care of people at the hospital everyday who do not do these things and I do not judge.

We both love kids.  When I was little, I was disappointed that I didn't get to have a baby sister or brother (although now I see that being the youngest definitely has it's perks).  I started to babysit as soon as I was allowed.  I volunteered in a daycare center and a hospital rocking babies. My husband still spends a crazy amount of time coaching little kids hockey. We love, love, love our nieces, nephews, and our goddaughter.

I have always dreamed about being a mother to three or four blonde, curly haired kids.   I always imagined being pregnant and breastfeeding.  Now I don't know if I can have even one of those things.

Even if things go well for us with my treatment, we will not be able to choose how many kids we want, spaced as we want them.  Don't get me wrong, it is a miracle of modern medicine that we might even be able to have a child with my diagnosis. Years ago, I would already have had a hysterectomy by now. But this is my 'why me' post, so why me?

For the past year, we have planned to buy a house in the suburbs, at least 4 bedrooms to fit all of the kids we planned. Will we be able to fill those bedrooms?

Because it's my personality, I have to end even this post saying that I know that we will get through this and become parents, one way or another.  Our little miracles might not have my blond, curly hair but they will be ours.  And wow they will be loved!

Some Answers

Wednesday morning we arrived at the gyn-onc office early for my 8:00 appointment.  I looked around the waiting room and every woman there had gray hair.  They were all accompanied by their husbands.  I had that part going for me.  We waited awhile, but we were just happy that they managed to fit us in so that part was no big deal.  We were both getting more and more nervous though.  

Finally we were taken back to an exam room.  We waited a few more minutes and then spoke with the nurse practitioner first.  She had already reviewed all of my records and was familiar with my case.  She was nice, young, and I felt comfortable with her.  Then we spoke with the doctor.  I think she has a calming personality that made me feel a little better.  We also recognized each other from the operating rooms.  

When we started to discuss treatment, the first thing she said was that the standard treatment for endometrial cancer is a hysterectomy.  Gulp…

Then we found out that I was a candidate for conservative treatment with hormonal therapy for several reasons:  the pathology of the tumor was only Grade I, my MRI was negative for signs of invasion into the uterine wall or metastasis, and my chest x-ray was negative for metastasis to the lung.   But, they made sure several times, that we understood that the standard treatment is a hysterectomy (gulp again…) and that conservative treatment would not be without risk.  There was a chance that the hormones wouldn’t make the tumor regress.  There was risk that the cancer could grow and spread while we tried this.  But, they thought that it was a reasonable plan if we wanted to preserve my uterus for potential fertility.  

They were unsure (like my infertility doc) why I developed this cancer at such a young age.  Endometrial cancer is typically a disease of post-menopausal women.  The younger women who develop it typically have one of two risk factors that create a hormonal environment with high estrogen levels: polycystic ovarian syndrome (PCOS) or obesity.  I did not have either.  Genetics can, of course, play a role so they suggested that I see a geneticist.  

She answered all of our millions of questions.  I knew that I would think of more when I walked out the door and they both volunteered their email addresses to field questions.  

We left with a plan and here it is:

I would start hormonal therapy with megace (megestrol) that day.  Megace is a progesterone-like hormone.  Because endometrial cancer is a hormonal condition and is fed by high estrogen levels, therapy with progesterone can make it regress.  

They would request that my original pathology samples be tested for estrogen and progesterone receptors in the tumor.  High estrogen and progesterone receptor levels imply that the cancer should be responsive to this treatment.  

I would take megace for 3 months.  In 3 months (June) I would have another surgical procedure – a hysteroscopy and dilation and curettage.  This endometrial sampling would give us more information on whether the cancer is responding to the treatment.  

If the cancer has regressed in 3 months (June), I would continue the megace for another 3 months.  At that time (September), I would have another surgical procedure.  If the cancer was still gone, we could try IVF! 

If the cancer had not regressed in June, I would double my megace dose and try again in September.  If it had not regressed in September, we could try megace for another 3 months.  In December, if the cancer had not regressed, I would have a hysterectomy.  

Basically, we had 9 months to try to get this thing to go away.  

So, best case scenario, we could try IVF in the fall!  Worst case scenario…  I would have a hysterectomy within 9 months.  But they would let us harvest eggs before then.  That would also be complicated though, because the procedures for harvesting eggs require estrogen, which could feed the tumor if it lingered anywhere in my body.  They suggested I see another reproductive endocrinologist and infertility specialist who they frequently worked with for another opinion on fertility preservation.  

The other overall theme was that I need a hysterectomy no matter what.  Attempting to get pregnant and have a baby (or two) would just delay the inevitable.  Some women with this cancer have one pregnancy and are still clear afterwards and can get pregnant again.  Some women relapse after pregnancy in which case a hysterectomy might be the recommended treatment with or without another course of megace.  If we were allowed a second pregnancy, it would have to be soon after the first.  I had never planned on having multiple kids within a year, but if that is my worst problem then that would be just wonderful!  

So we left the office, dropped the prescription off at Rite Aid, and headed to Starbucks for a drink (mine decaf – I gave up caffeine when we started trying to get pregnant!) while we waited for the prescription.  We arrived home with two drinks and a bottle of megace.  I crossed my fingers that I wouldn’t be allergic to this potential miracle drug and we toasted with our coffees while I took the first dose. 

An Amazing Friend

I got the most amazing email today.  It brought tears during my lunch break from the OR.  My great friend emailed me that she and her husband have been thinking for months about potentially being a surrogate for us.  She told me that they have done research on the process and have really thought about it.  She has one child and her pregnancy was uncomplicated.  

She said that she didn’t know how to bring it up earlier because she didn’t want to imply that she thought we would never have our own children.  She knows that we will (hopefully!) be trying IVF and if we do we will hopefully (!) be successful.    

It means the world to us that they have thought about giving us this gift.  I cannot imagine a greater gift than helping us have a child.  

Of course there are many complicated decisions that go into this process and we would go through every one in detail.  But for now, it makes me smile and definitely eases my nerves, to know that our great friends are out there for us.  And if they change their mind, absolutely no hard feelings!  

I feel so fortunate to have wonderful, supportive friends and family.  

My Productive (and Humorous) Monday

I had an agenda for Monday.  First I called the gyn-onc office again to see if I could get an earlier appointment.  The correct assistant was back in the office and said, "No problem!  We will fit you in first thing Wednesday morning, after the doctor sees the morning chemo patients."  My first thought was "Yes!  That is only 2 days away!"  My second thought was, "Chemo?  Wow..."  I called my hubby and told him the good news.  We would have some answers on Wednesday.  

I called my infertility doctor's office to request my records. The gyn-onc doctor wanted to take a look at these at my appointment. They were incredibly nice there (they were nice throughout the infertility process but now they all knew what was going on) and said they would have copies ready by lunch.  
 
Next I planned to go get my chest x-ray.  I headed to my hospital - I say my hospital because I have been there for 6 years, 4 as a medical student, and now 2 as a resident.  As I walked in the door of the outpatient building and registered with the prescription in my hand, "chest x-ray. diagnosis: endometrial adenocarcinoma, rule out metastasis," I realized that I was now a patient here.  Of course I had had my share of primary care, gyn and eye doctor appointments in the past, but I had never actually been "sick" before.  And I didn't even feel sick.  It was a strange feeling to be on the other side of the medical world.  The x-ray was easy and even a little interesting.  I had looked at hundreds of chest x-rays but never actually seen one done.  Now I know. 
 
My next task was lunch!  I had to take advantage of a little time out of the hospital (away from work, I mean...).  My cousin and I met for a yummy lunch and to discuss all of this.  I picked her up for lunch and got a phone call from my oldest sister while we were in the car.  Over my car's bluetooth so we could both hear, my sister said, "I have some bad news for you."  I was thinking, "what now...?"  "The girls both got sent home from school today with lice and since you and (hubby) were with them all week, you need to check yourselves for lice."  Seriously?  We all started laughing.  She explained in detail how we needed to check our hair.  I couldn't help but feel itchy all through lunch. 
 
After lunch we headed to Rite Aid to find some lice searching supplies.  Its a good thing I have a supportive cousin who was willing to look through my thick blonde curly mess.  We followed my sister's instructions thoroughly and didn't find any of the little nasty things in my hair.  I searched through my husbands later and didn't find any there either.  We were clear! 

After getting cleared I drove to the fertility center to pick up my records. They were ready for me at the front desk but I walked back to the billing office with a quick insurance question.  I had met one of the billing specialists multiple times, a really nice woman. She walked me out to the board of baby pictures (their success stories) and pointed to one and told me the story. The baby's mother had been diagnosed with some type of cancer and was unable to carry a pregnancy. Her mother worked in an office and had shared her daughter's story with her colleagues. One of the woman who worked in her mother's office volunteered to be their surrogate. They were able to harvest eggs and after a successful surrogate (gestational carrier to be politically correct) pregnancy they had a beautiful healthy baby. With my eyes tearing I thanked her for sharing the inspirational story, took my records, and headed out to my car. 
 
Now to focus on Wednesday's appointment...  I called my program director who gave me the day off for the appointment.  I just had to survive one day working in the operating rooms before we would have some answers.