EndoCa: Ready for the 2nd half of life! (very long)

I will put the morale of this story at the beginning, instead of at the end: do NOT ignore odd symptoms and DO keep your regularly scheduled check ups!

I will also apologize upfront for the length of this post, but it was very helpful to me to put all this information in one place. I hope that it may be helpful to some of you as well.

Here’s my story. I had a normal period every month from the first one at the age of 12 until I went on birth control pills at 19. I had a few months of mid-month bleeding after starting the pills, but nothing serious. In fact, after that the pill made my periods even more exact. They would start at 10:00 am on Saturday and last five days, every month, year in - year out. I was on bc pills from age 19 until 33, nearly constantly (I took about a year off when I didn’t have health insurance and couldn’t afford the rx or the annual exam without insurance).

When I was 32, I was diagnosed with high blood pressure. I was overweight, but otherwise healthy. My GP said I was just one of those people with stiff veins and put me on a low dose drug to control the blood pressure. It worked. (I was told that same year by my Dentist that I grind my teeth, and started using a mouth guard at night. I chalked it all up to stress as I was working a full-time job in management and going to night school nearly full-time to get my MBA degree.)

The next year my Ob-Gyn Doctor’s LPN did my annual pelvic exam and pap smear as my Doc was “too busy”. The LPN told me flat out I needed to go off bc pills immediately or expect to suffer a stroke very soon due to the combination of bc pills and hbp. I started crying in the in exam room.

I panicked and agreed to try the Depo Provera shot, which had a lower dose of hormones than the pills. After the first shot I had nearly constant breakthough bleeding for 3 months, and was assured by the clinic that was normal with Depo. I had 3 more quarterly shots, but then had virtually no bleeding in that 9 month time frame.

I switched Docs to one that wasn’t so busy and could actually see me, but stayed with the same clinic. When I went back in for the annual exam, I asked for another option to Depo as I did not like not knowing where I was in my cycle due to not bleeding. The new Doc put me back on bc pills, but a much lower dose.

At this point I was 35, and neither dh or have experienced a ticking biological clock (much to mil’s distress, but I digress…) and were pretty happy being childless. I know that menopause often comes early for women who never got pregnant, so I was not surprised in the next few years when my periods started to be more erratic and sometimes much heavier than in the past.

For the years between age 35 and 39 I switched Docs another 3 times (2 retired and 1 had an awful bedside manner) but stayed with the same ob-gyn clinic. At my annual exam at age 39, I met a Doc I liked. However, she gave me news I did not like. I could have 1 more rx for bc pills, she said, but at 40 I would have to figure out something else. I tried convincing dh to see Dr. Snip, but he was very reluctant.

Shortly after my 40th birthday I went for my annual exam with the same Gyn as the previous year. Indeed, she did take me off bc pills, as she had promised she would. I left the appointment with the idea of finally convincing dh to get the big V, or to perhaps try an IUD, but in the meantime to use OTC bc. As soon as the bc pills ended I immediately started lots of breakthrough bleeding…in fact it was nearly every day. My actual periods also got MUCH heavier than they had been.

At this same time I had lots of job related stress. My boss and I did not agree much, and after 6 months of nearly daily conflict, my position as senior manager of a non-profit was “eliminated”…just weeks before the stock market crashed in September 2008. I was very lucky to find a long term temp job, but that job came with a long commute and lots of stress too.

As I had breakthrough bleeding when I first started the pills at 19 and again when I switched to Depo, AND I was 40 and childless, I didn’t think either the constant bleeding or very heavy periods were too unusual. About 10 months after going off the pills I even had some clear discharge on days that I wasn’t bleeding, and I was in such denial that I was relieved that it was “just” clear and not blood, so I still didn’t seek medical attention.

In my defense, I could barely think about anything other than my stressful job(s), so I ignored the symptoms (as much as I could ignore them while wearing pads every day and soaking them every hour during my period). In fact I even had a few episodes of intense abdominal cramping in mid-month. While that seemed odd, it would disappear within an hour after taking 3-4 Advil, and I would forget that I even had the pain or I would think it was some odd stomach virus, and just keep working.

I also had an episode of severe leg pain and swelling with no injury associated. Unfortunately, it showed up the day before I left for a beach vacation – with lots of walking. However, I still did not seek medical attention as the pain and swelling went away a few days after I got home.

Finally, I did schedule my annual exam, and “only” few months late. I had a normal mammogram, pelvic exam and pap smear. In the appointment I complained about how annoying the (self diagnosed) peri-menopause symptoms of heavy periods and constant breakthrough bleeding was (but didn’t think to mention the clear discharge, the abdominal cramps or the leg pain…um….duh!). I fully expected a pat on the back and the advice to get used to the bleeding, as it was only going to get worse.

Instead, my Gyn asked me to schedule an ultrasound before I left the clinic. Since we never even tried to get pregnant, I had never had an u/s before. The u/s showed a very thick lining, with an intrauterine defect. Then the Gyn wanted to do a biopsy, which showed complex hyperplasia with atypia. That got my attention, but she assured me that it wasn’t cancer, or even pre-cancer, so that calmed me down. (I am not sure why she told me it wasn’t pre-cancer, as I’ve since learned it is.)

So then we schedule a dilation and curettage with hysteroscopy. I still wasn’t that worried, as my Gyn had (incorrectly) told me it’s not even close to cancer, and as I had a close friend just go through similar tests to dx fibroids – and she had a LOT more pain than I did.

The d&c results showed more than hyperplasia – it showed endometrial cancer - specifically grade 1-2 Endometroid Adenocarcinoma. We thought it might be stage 1B or maybe 1C, but wouldn’t know for sure until after surgery.

That was quite a shock. I mean, I didn’t even go seeking answers – I just mentioned my (what I thought were normal) symptoms at my annual exam, and a few weeks later I have cancer? And I have to have major surgery? How can that be?

I met with the Gyn Oncology Surgeon 3 days later. He said that I picked the right kind of cancer to get as this type is very curable with surgery. We scheduled a total abdominal hysterectomy with bilateral salpingo-oophorectomy for 5 weeks later. Those 5 weeks were pretty hard, but I just tried to stay as calm and positive as possible. By this time my temp job was long over, so I was not working, but I was job hunting. This dx put job hunting on the back burner.

My surgery was uneventful. I had an epidural for the 48 hours after surgery, and went home from the hospital about 60 hours after being admitted. The Gyn Onc did a lymph node sampling and a pelvic wash, both of which were cancer free – very good news. However, there were microscopic cancer cells in the cervix, so the cancer was staged 2A. That meant that preventative radiation therapy was recommended, but I would not need chemotherapy.

The Gyn Onc referred me to a Radiation Oncologist, who recommended 5 treatments of high dose radiation brachytherapy, but no external beam radiation therapy. While the brachytherapy is more invasive than EBRT, it’s also done quicker – just 5 treatments for me, vs 25-35 treatments of EBRT.

The Rad Onc said that without radiation treatment the chance of the cancer returning in the vaginal cuff area at stage 2 is about 20-40% depending on which study you read, but with treatment the 5 year survival rate is virtually 100%.

My recovery from surgery went well, with just a bit of infection in the incision, for which I took a week of antibiotics. I also did not have severe menopause symptoms, just hot flashes that didn’t last long, some insomnia, and vaginal dryness. I asked my regular Gyn about HRT, and was told that was not an option for me, since I had an estrogen fed tumor. If the insomnia got worse she would rx sleeping pills and if the hot flashes got worse she’d rx antidepressants as there are recent studies showing they help with hot flashes.

I started the HDR brachytherapy process 8.5 weeks after surgery, and had the 5 actual treatments over a 4 week period. Each appointment was only about 30 minutes door to door, and the actual radiation was between 4.5 and 6 minutes. I would undress from the waist down, lie on the table and the Rad Onc would insert the radiation applicator with some numbing gel into my vagina. Then they would x-ray my pelvic area to ensure the applicator was in the correct place after comparing the x-ray to a CT scan I had with the applicator in place a week before treatments started.

After that, the Radiation Physicist would come in to attach the radiation source to the applicator, and tell me how long this particular treatment would last. After the allotted time, during which I was alone in the room, but watched via cameras by the staff on the other side of the thick lead door, the Physicist would return to check me with a Geiger counter. Then the Rad Onc would return to remove the applicator. After that, I would get dressed and leave.

After the first treatment I was nauseated and had a weird taste in my mouth – both of which are stress reactions for me. I called the Rad Onc office and received a rx for anti-anxiety meds. I took one before each of the 4 remaining treatments and the weird taste did not return. I had light spotting after each treatment. Otherwise, during the treatment period I had some minor diarrhea, some itchiness and irritation in the vagina and vulva, and had vaginal cramps one afternoon.

Vaginal stenosis, scar tissue in the vaginal cuff, is a side effect of HDR brachytherapy. I will need to use vaginal dilators or have intercourse at least twice a week for the rest of my life to diminish this effect.

I will have a follow-up exam 8 weeks after the last radiation treatment, and then every 3 months for the next 2 years, and every 6 months for the following 3 years, alternating between the Gyn Onc and my reg Gyn.

And, now that treatments are over, I just need to find a job.

Seriously, I feel very lucky to have found this cancer early, and to have it be so treatable. I feel especially lucky to have a Gyn who not only paid attention to my symptoms, but insisted on further tests, even when I thought things were fine.

Thanks for reading.