Blood Clots, DVT and Neuroendocrine Cancer - Be aware.

Posted by splendrous @splendrous, May 29 12:01pm

Last week I woke up with a swollen arm and went to the ER as I was also very weak. I was diagnosed 9/24 with metastatic neuroendocrine cancer in the liver, well-differentiated, non functioning, Ki 6-8%.

No doctor had ever mentioned that a cancer diagnosis increased my risk of blood clots. So assuming that many on this forum would also find this new news.

If you have diabetes, over weight, smoke, high cholesterol, hyper tension, or a woman, your risk is increased in addition to the cancer diagnosis.

I was diagnosed with DVT that is attributed to my metastatic cancer. Outside of being a woman, I have no other contributing factors.

Expected that I will continue to be at risk with metastatic cancer and will be on blood thinner for the rest of my life.

Most of the time it is found in the leg, but mine was the exception to be in the arm.

A Jan 2025 NIH article might be of interest. Conclusions: Venous thromboembolism is a significant complication in NEN patients, especially in advanced or poorly differentiated tumors. Early detection and targeted management are critical for improving outcomes. Pancreatic NENs exhibited the highest thrombotic burden, particularly in poorly differentiated and advanced-stage tumors.

When a blood clot dislodges from its original location and travels to the lungs, where it can block an artery. That condition is very dangerous and can sometimes be fatal.

Blood clots are a very common side effect of cancer. And aside from the cancer itself, they are the second most common cause of death among cancer patients. So, if you think you might be developing one, don’t wait. Contact your care provider right away and get it checked out.

There are a few things you can do to reduce your risk of blood clots.

Sometimes, even otherwise healthy people will notice some ankle swelling if they’ve been sitting in the same position for a long time, like on a transatlantic flight. So, try to avoid long periods of inactivity or immobility. Get up and walk around frequently to keep your blood flowing, whether you’re in your car on a long trip or sitting at your desk or on the sofa.

If you have any injury to your legs or body, be vigilant about watching yourself for symptoms.
If you’re carrying excess body weight, look into weight loss programs.
And if you smoke, quit now.
https://pubmed.ncbi.nlm.nih.gov/39857994/

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Wow, had no idea to look out for clots, diagnosed 2022 with NETS. Did you have other symptoms besides the swelling?

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Symptom was swollen arm & hand. Also caused an irregular heart beat as it interrupted blood flow. Ultra sound showed multiple clots in the arm. I am told it is more common to have a blood clot in the leg. Important to go to ER quickly where they can assess any damage and give you heparin to thin
the blood.

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Also be aware of chest pain and shortness of breath. I thought I was having a heart attack, but pain was improved with oxygen. Diagnosis after CT scan was pulmonary emboli (blood clots) in every lobe of lung and DVTs up and down both legs. Very scary, but all is well now. I am on elaquis forever...

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I was coached to wear compression socks from the beginning for the following reasons:

- Help prevent blood clots from forming in the legs.
- Help prevent fluid buildup in the legs and ankles.
- Can reduce leg pain, fatigue.
- They gently squeeze the legs, promoting blood flow back towards the heart.
- Improved circulation can help with quicker recovery after travel or strenuous activities.

I also wear compression gloves that go about 1/3rd of the way up my arms for the same reasons.

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@lu7

Also be aware of chest pain and shortness of breath. I thought I was having a heart attack, but pain was improved with oxygen. Diagnosis after CT scan was pulmonary emboli (blood clots) in every lobe of lung and DVTs up and down both legs. Very scary, but all is well now. I am on elaquis forever...

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I had two strokes before being diagnosed with pNET. Turned out I also have antiphospholipid syndrom. So, on Coumadine(Warfarin) forever.

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In follow up visits I have learned that the veins in my chest are scarred and narrowed due to the radiation I received for my breast cancer in 2016. So the scarring of the veins and the current metastatic neuroendocrine cancer thickening of the blood resulted in the blood clots and caused the arm swelling. Good news is that the clots did not go to the lungs which could be life threatening.

So if you had radiation for breast cancer, your veins could be scarred and narrowed as a result.

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