Dec 06, 2013 - 12:28 pm
Well, I guess I'll just jump right in. I was diagnosed on September 24th with Stage 4 Endometrial Cancer. It all started in late August - I think. I'll try to explain here. In August of 2011 I was diagnosed with multiple, bi-lateral PE's, which came from DVT's in my leg after an injury. I was started on Coumadin and did it for a year and a half. It did not change my period at all, but I noticed the fourth month that after my period ended, I had a very light, clear discharge for a couple of days and then it stopped. I went to my gyn to ask about it . . . should I be concerned, is it a side effect of the coumadin, etc.? It was not the coumadin, it could be nothing, but we'll test and monitor it. Pap smear results showed the discharge had endometrial cells in it, which she said is not normal, but not an automatic issue for concern. She didn't want to do anything invasive since I was on coumadin and decided to do regular tests and ultrasounds every 6 months. The first U/S showed what appeared to be a single fibroid along the back wall. She advised that we shouldn't mess with it unless it begins to cause excessive pain or bleeding. We'll monitor it. Each month, the discharge was still very light, but lasted more days. I kept my gyn informed of the progress and we reviewed each ultrasound, but so far they didn't show anything that was a problem. About a year ago, I went to her concerned about a tenderness I felt in my right groin. I could also feel a little knot the size of a quarter that became very tender, even painful approaching my period. She examined it and said it was probably just an inflamed lymph node and put me on antibiotics for about a week.
Well, as of the beginning of this year, the discharge has been daily, though still very light with no foul odor. I'd been taken off of coumadin last November, but she didn't see the need to do a biopsy or anything like that. The ultrasounds apparently didn't show anything of concern based on my understanding from my gyn. My last regular one was on August 9th. The following week, I had a sudden pain behind my right knee. It wasn't my DVT leg, but knowing my history, I scheduled an ultrasound of the legs for August 19th. That morning, my gyn called me at work to come in immediately to discuss the results of the 8/9 ultrasound. I went and she read the report to me and said that it advised getting a tissue sample and that was good, she said, because I was no longer on the coumadin. She informed me that she didn't feel comfortable to continue monitor this case and referred me to a gyn oncologist. I had my hematologist give her a referral because, under the circumstances, I didn't feel comfortable going with whomever she might refer me to. That afternoon, a blood clot was confirmed behind my right knee and I was placed back on Coumadin as well as arixtra shots.
On August 25th, I started bleeding very heavily that night, passing clots so big I had to use muscle strength to get them out. I had to call an ambulance after midnight and was rushed to the hospital. My INR was 4.7 and I was fading in and out. The ER doctor advised that I had already lost 1/2 my volume of blood. They gave me two units of FFP to stop the bleeding and it took a total of 6 units of blood to replace what I had lost. I was hospitalized for a week and a filter was placed through my right carotid to protect my heart and lungs from the clot in my leg as they said I could not longer do anticoagulants until we figured out what was going on. I was released, saw the gyn-onc I was referred to the next week. He said my uterus, cervix, etc. looked perfectly normal for a health woman my age, but needed to do a DNC to see what was going on based on the ultrasound. It was scheduled for the end of the month. A few days later, I was rushed right back to the hospital with heavy bleeding and a CT scan showed a new, huge saddle embolus in my lungs. Over the next month, I was hospitalized repeatedly, never lasting more than 24 hours after release before having to go back due to critical bleeding. I was released on 9/15 and rush right back on the morning of 9/16. They thankfully decided to go ahead and do the DNC and endometrial cancer was confirmed. It took a week to get the full pathology report. Stage 4 endometrial cancer and it had, in fact spread to that lymph node in the right groin.
[Let me pause here to say that I say "I think" it started 8/26, but gave the two year back story because I feel it must be related. I felt, and still feel mostly, that my gyn let me down. I feel as though she just watched this progress and then dropped me like a hot potato. My current oncologist, assigned through the hospital, though, said he has studied my case from every angle and he strongly feels that it was a very rapid onset that started when the critical bleeding started in August - which means, there may not have been anything to see during the two years before. AT any rate, I am where I am at the moment.]
I cannot have a hysterectomy because of the blood clots. I had CT scans three weeks in a row that showed new clots in my lungs and upper body each time. The doctors told me even before the diagnosis that cancer was a concern because when the body detects a malignancy, the blood often becomes hypercoagulative in the body's attempt to fight it and that would account for the sudden unexplained clots. So, surgery is out of the quesion until the clots are resolved. Chemo was delayed a week because they had to do about 4 locally targeted radiation treatments over a couple of days to stop the bleeding (rushed back to hospital after release . . . again). So, I started chemo on 10/7. I'm doing the Taxol/Carboplatin combination. I've not had major issues with it . . . it's the after effects of the Nuelasta shot that I could do without. The plan is to do 6 chemo treatments then, if the surgeon clears me following a CT scan and progress on dissolving the clots, surgery. My oncologist is encouraged by the fact that aside from the one lymph node, the cancer is contained to the uterus. He feels I should be completely clear with this game plan, though they may do a couple of precautionary chemo rounds afterwards.
At this point, I've had up days and down, but overall feel blessed actually. I believe that God has been preparing me over recent months for this diagnosis (it would take a much, much, MUCH longer post to explain that), so it didn't destroy me as I would have thought. My overwhelming feeling upon diagnosis was relief that we at least knew what was going on and had an aggressive game plan in place to address it - I wasn't bleeding out with people just standing by and watching anymore - which is what it felt like for quite some time. I've been able to return to work and the only major problem is cutting down to 1/2 days during treatment week. I've begun singing again, though it's limited because the chemo strips my voice so I'm only good for singing right before treatment. I have my fourth treatment on 12/16 and my mindset is still just determination to get through this journey, blessed to know God is walking it with me, thankful for friends and family supporting me and looking forward to coming out the other side.
I wanted to share my story by way of introduction and commiseration in case there's anyone going through similar occurrences. Know that you are not alone. I'm sure I will have questions and can hopefully contribute some support as well.