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Blood Clots, DVT and Neuroendocrine Cancer - Be aware.
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/
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Wow, had no idea to look out for clots, diagnosed 2022 with NETS. Did you have other symptoms besides the swelling?
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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2 ReactionsAlso 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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4 ReactionsI 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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1 ReactionI had two strokes before being diagnosed with pNET. Turned out I also have antiphospholipid syndrom. So, on Coumadine(Warfarin) forever.
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2 ReactionsIn 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.
I was looking for posts here on DVT's. My post is about advocating for ourselves. I luckily get yearly follow us from the MO office as i have the Brca2 gene mutation. The hematology department has i had a bone marrow transplant in April of 2024. I have checked my ankle often since my first dvt. It is like checking my forehead for a fever. I have done that since late 2021. Advocate for myself by checking myself. I did not insist on this last ultrasound lst week, but i mentioned my ongoing swollen ankle. From very good NP to MO, action was initiated.
Looks like we arrived here through many paths. I had a surgery in early 2022 and was found to have a blood clot. I had my regular follow up after surgery and as i was leaving i mentioned to my nurse i forgot to show my doctor my swollen ankle. Thick not hugely swollen. She took a picture and said to wait at the checkout area. Shortly after, I was sat in a room as urgent care was getting ready for me to come over. With in the next 30 minutes i was in urgent care and being sent for an ultrasound. DVT- Deep Veing Thrombosis.
Wow. My 2nd surgery was postponed as i was put on Eliquis for 6 months. I was originally told to wear compression socks, but after my late 2022 surgery, my ankle was still swollen. Dang. This time i was sent to have my legs measured and a thigh high compression stocking was ordered. That actually helped as my clot is on the back of my thigh.
Now 2026 and not wearing my compression stocking much, I had moved to spring capri wearing and saw my ankle was a bit swollen. TheNP noted this and ordered an Ultrasound. Based on the techs action I thought something was found. She tried to contact my MOs office, but 20 minutes later, no answer. This MO is hard to reach. So the tech suggested I call them for my follow-up.
The scan results were in my portal the next day. I called to make sure my March 31st follow-up was still in the books. -Friday i had driven up to the local mountains for an annual retreat. About 4pm i got a call from the MO's office. A tele visit had a bad connection, so the NP called. Her message was clear, It was good i got the US, as i have a new DVT forming. Without treatment it could break off and shoot to my lungs for a pulmonary embolism. She insisted i get to a pharmacy to pick up Eliquis. I asked if i could wait till Sunday night when i get done with my retreat. She said no, you need to get to a pharmacy tonight. Luckily, there was a CVS close by and i got my meds. Got started that night and just today I got the call from the anti-coagulation department in hematology to review what comes next as to treatment timelines.
I laughed when the original "vein" doctor as i called him said i will likely be chronic. What? No way.
Guess what, as of today, yes way. I just confirmed with the NP who called that wearing my thigh high compression stock would be helpful.
As someone told me this weekend, I have a body that keeps on giving.
I had two MCA ( strokes) in 9/21 and 12/22 before being diagnosed with PNET. Actually my second stroke led to a CT scan that showed the tumor in my pancreas. I have been on Lanreotide post surgery since 3/23 and on Warfarin ( blood thinner) since then.
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1 ReactionWe have NET in our family. Dad had small bowel nets with successful surgery. He had aortic stenosis also and took daily aspirin. My father passed due to what was called a saddle embolus to his lungs. After months of taking him to doctors for painful, swelling in his legs that was misdiagnosed, a physician finally sent him for ultrasound of his leg. Too late as the clots had traveled to his lung that same week. He was put on lovenox injections and after a week he was discharged. We were home one day and he developed gastric bleeding as he always had duodenal ulcers. There was no winning.
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