I have a strong, strong family history of cancer (mother x3, aunt, uncle, grandmother, grandfather, great-aunt), but even with that I don't have cancer and it wasn't really considered a possibility for me in regard to my clotting. Most of my doctors told me that I would probably already have symptoms of cancer if it was related to my clots. It's very rare to have undiagnosed cancer that causes clots.

Although my first two clotting incidents (DVTs) were blamed on birth control pills, my PEs were unprovoked. I've had all the testing three times and I am negative for everything. At this point, we don't officially know what causes me to clot, just that I do.

Somewhere I have a copy of a study that says that up to 30% of clotting incidents can be unprovoked and have no clear cause, so you have plenty of company including many of us on this board. Having no cause for your clots doesn't mean you're doomed to get cancer.

To me, it seems backward to worry about cancer because you've clotted. Clotting doesn't increase your risk of developing cancer ... it is the other way around ... cancer increases your risk of developing clots. You don't have cancer and if you do develop it in the future, it is probably completely unrelated to your clots, which already happened.

To me, it sounds like you're being plagued with some bad anxiety. Anxiety isn't particularly rational and it'll tell you lies (like that you're going to get cancer!) that can run your life. If you haven't already gotten treatment for your anxiety, you need to take a look at that and decide if you want it to be taking over your world. For me, I did meds and talk therapy and meditation to help with my anxiety, but you can find other things that work for you (e.g., journaling, exercise, online support groups) if those don't. It was a relief, actually, to take meds and realize that I could focus more of my energy on healing and less on worrying.

Hang in there. Address the anxiety, and move past the concern about cancer. It sounds to me like your brain is just giving you something to fret over.

About 7 months after my PE, I met with a hematologist and mentioned my concerns about malignancy. He said if I had cancer, I'd be symptomatic of cancer by now.

So if you have no symptoms of cancer, do not present as someone with cancer, and you've already been scanned and nothing was found, your clots were not caused by un-diagnosed cancer. You have to try to inject some reason into your thinking.

Many people here have unprovoked clots and do not have cancer. In fact, I've been here since 2007 and I can think of only a handful of people who've been on this board whose clots were directly linked to malignancy or chemo.

Time to let go of the cancer thing and move forward and live your life as a healthy young man. Take care of the anxiety. That's where your time and energy should be used.

I can relate. My clot was at the age of 31 with no known risk factors or clotting disorders I read some awful statistics while I was still in the hospital and I was convinced they would find cancer lurking somewhere. It will be 2 years since my clot this July and nothing has been discovered yet. As others mentioned, and my hema told me as well, generally by the time there is a cancer significant enough to cause clots then it's causing other symptoms as well like a nagging cough or bright red blood in the stool. Often times people just haven't "gotten around" to having those symptoms checked yet when the clots stop them in their tracks. You've been searched inside and out for any signs so try to relax and focus on moving forward and living your life. This experience will change you in that it will never allow you to ignore anything out of the ordinary and that's a good thing. IF cancer should pop at some point, you will most certainly notice the symptoms before it has much chance to take hold. It might be worth it for you to see a therapist for a bit. I have an anxiety disorder anyway, but such a traumatic event like a PE is certainly a solid reason for a few sessions just to talk about your feelings so they don't take over your life. Good luck!

Thank you for replying to my message and concern. It means a lot to me to have someone who can understand me.
My anxiety is much less now in regards to the cancer issue.
Lastly, Can I ask what you guys think about the duration for taking the blood thinner? One of the hematologists said that I have to be on xarelto indefinitely; the other one says to be on it for a year and then switch to aspirin. Do you guys think that I will be clot free while on xarelto? I had 2 ER visits even while being on the Xarelto because of some chest pain. However the work up was negative for any new clotting.
Thank you all so much.

It's pretty standard to take an anticoagulant for 6 months to a year. Some folks do less time if they had a clear cause (like surgery) but others can do longer.

Ultimately, how long you decide to stay on the anticoagulants is up to you. No one is going to drive out to your house and force the medicine down your throat every day, so your long-term treatment needs to be something that you feel good about.

For me, I had two DVTs (2005 and 2009) before I had my PEs (2010). Normally, people become "lifers" after two clotting events, but I though I knew the cause of my clots and wound up doing three. That's pretty unusual. Many people only clot one time, do their six months of treatment, and live their lives without reoccurence. It's possible you could be one of them.

It isn't unusual to get conflicting opinions on what you should do after a clotting incident, especially an unprovoked one. You should do your own research, ask your own questions, and make sure that you're comfortable with the choice that you make. It really is up to you... you're not at the mercy of whatever doctor you see.

Also, it is hard to say if you'll be clot-free after a year on Xarelto. For most people, yes, their clots will be gone after that time. (Note that the Xarelto doesn't dissolve them ... your body does that. The Xarelto just prevents them from getting bigger and stops new clotting.) That's not true for everyone. I had a DVT in my right leg that took between 5 and 9 years to totally go away. More chronic clots like that aren't really a danger in themselves, since they start to harden and form a sort of "scar" on the vein wall. They can be an issue if they're somewhat blocking blood flow, since other clotting can occur as a result. That's less of a problem with old clots in the lungs, though.

Also, don't be convinced that chest pain means you still have clots. Even if your clots dissolved five minutes after you were diagnosed, the damage they leave behind takes a while to heal. My cardiologist compared it to getting cut with a knife ... the healing happens after the knife is gone. I mean, I had multiple PEs in each lung and they were gone after five weeks (confirmed by CT), but I still had pretty acute symptoms (exhaustion, SOB, occasional pain) up until about 11 months out. The clots tax some of the most important systems in your body (respiratory and circulatory) and recovery just doesn't happen overnight. My symptoms got less severe and less frequent over time, but it still took a while.

Also, please think seriously about getting some help with the anxiety. Anxiety is *VERY* normal after an event like this and you shouldn't be ashamed to get some extra support for a while to help you work through it. It's possible that it'll resolve without any extra help, but it's also possible you could continue to battle with it years and years from now. Tilt the odds in your favor.

Also, here's an article from Dr. Stephen Moll over at Clot Connect at duration of treatment after DVT/PE:

http://patientblog.clotconnect.org/2011/03/30/dvt-and-pe-how-long-to-treat-with-%E2%80%9Cblood-thinners%E2%80%9D/

Like Toss said, there is often a disagreement between docs on life long anticoagulants vs limited duration anticoagulants. I would ask both doctors why they think one over the other, the risk of both options, and then with that information, you decide what you want to do.

It's unlikely to clot while on ANY anticoagulant. Is that what you're asking, that despite being on xarelto, could you be having more clots? Usually the people who clot while on anticoagulants are people who haven't been taking their medication as prescribed or have tricky genetic clotting disorders. Chest pain is not uncommon for a while after having had a PE. If they ruled out additional clots, I suspect your chest pain is related to healing and to your anxiety. You cannot underestimate the power anxiety has on your body. Many of us have experienced that and so I agree with Toss to really take care to address it. You'll feel and think so much better when you do.