Pulmonary Embolism Support Group

By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.

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Follow up with a happy ending

soola
soola

I started visiting this site about a year ago.  Long story short, I was diagnosed with endometrial cancer, which caused my blood to thicken which caused multiple DVTs  and multiple PEs in all lobes.  At first I was scared of the cancer, but the onc told me it was early and it would be "cured" by a full hysterectomy.  I was 63 at the time so that wasn't a biggy.  They scheduled the surgery for June.   A few weeks before the surgery, my left leg swelled up and I couldn't get a shoe on.  Went for a doppler. I've been for them before because of knee problems so I was sure it would come up clear of clots. Nope.  They had to postpone my surgery because of the DVTs so I could be on a thinner for a month before the surgery.  In the meantime the doctor wanted to do an MRI of the tumor to make sure it was still small. I said "Hey, while you're at it, check my lungs because I have been short of breath for about 6 months" .  (I thought it was because of my age, I'm a little pudgy and out of shape)  Sure enough they found all the clots. Then they did a heart work up to see what damage the clots did to the heart going through.  THey put off the surgery until August.  Knowing I had clots in the legs, clots in the lungs AND cancer kind of made me crazy last summer and all I could do was wait.  To prevent the tumor from growing during that wait, they gave me an IUD filled with progesterone which supposedly slows down the growth. So here I was, 63, post-menopausal, had my tubes tied 29 years ago and I'm getting my first IUD.  Gotta see the humor in all this. 



So one year later. Cancer's gone since surgery in August of '16.  Blood work done today was all back to normal. D Dimer is down to 199.  Heart damage wasn't so bad and is healing.  And the best -- today I stopped injecting myself with Lovenox!    I tolerated it well for the first 6 months, but in the second 6 months my hair started thinning, my bones started thinning (my body did NOT start thinning)  and I'm down to taking a baby aspirin every day for the next year.  My hematologist said "NO MORE CLOTS, Missy!" -=  as if I had anything to do with them the first time!  But I know to move every two hours on a road trip, and move my legs and feet constantly when I'm not driving.  And to drink water.


For those who ended up with clots because of a cancer, just know that there can be light at the end of the tunnel. The clots I had are shrinking, my blood is bakc to normal.   My prayers for all of you is that you have YOUR happy ending soon!

fate
fate
Wow, am I glad I found this site and read your post. I am 10 yrs. older than you, finished chemo 5/18 for a 1A u cancer only to find on June 5 I have clots in lung and legs. On Lovenox but still having depression as no one told me clots were a possibility. Hard to sleep at night and scared every time I have a twinge. Hope my outcome will be as good as yours. Hard to see the light right now.
soola
soola
Yeah. I didn't have a clue I had the cancer until I spotted. Clearly I had it months before the diagnosis in April of 16, since I was short of breath == at least that I can remember -- when we moved in November of 15. I had never heard that some cancers cause blood thickening. I did have genetic testing this past January to see if clotting was in my DNA. It was not. And since the d-dimer test was lowering within 6 months of getting the cancer out, the docs had to surmise the clots were all from the cancer. It's amazing, isn't it, that the cancer became a secondary worry. The first worry is the clots. Cancer you can fight, but a clot that is the wrong size that goes to the wrong place and stops --- that's an instant loss. Scary. I don't know if I was actually depressed, but I was paranoid. One year out, and finished with the darn shots, I still get a few twinges, but I know the lovenox did its thing. and my blood is back to normal. Of course, somethin's gonna get me sometime, but I am pretty confident I'm over this hurdle in life. You'll get there, too. I'm sad you had to go through the chemo. Everyone is different, every tumor is different, every diagnosis is different but if it was 1A, you got it pretty darn early, right? All good things. Frankly, I think the doctors should check for blood clots automatically when they diagnose Uterine/endometrial cancers because they seem to be among the cancers that cause blood changes. Whenever I hear about a friend or family member being diagnosed with either cancer, I recommend they ask their oncologist to at LEAST check in the legs. That's a fairly simple, non-invasive and non-dangerous test. If there's nothing in the legs, then you're good. But if there's something in the legs, then by all means, do the CT of the lungs. They need to know these are in there before they do surgery, don't you think?