Risk factors for blood clots and svc syndrome

Mercorby
Mercorby Member Posts: 97 Member
edited February 2023 in Uterine/Endometrial Cancer #1

Hi,

I am fully recovered as I write this, but I want to share my experience. I am in remission for metastatic endometrial cancer after 2 recurrences. The cancer is er+ and pr+ and her2- and I am on 100 mg of Ibrance and anastrazole for over 5 years. Because the drs know that this cancer will eventually return (and some of my drs didn't believe the Ibrance/ai would work), the drs wanted me to keep my port in. I was very concientious about getting it flushed monthly when I had my blood tests. Also, because it's the only way of finding recurrences in me, I have a PET/CT scan every 6 months. In January, 2018, I had an anaphylactic reaction to the iodine iv contrast for the scans, so the contrasts were discontinued. In fall of 2021, I started to notice a tightness in my neck where one end of the port was and in spring of 2021 the port itself started to get clogged. The nurse would go through the process of putting something in the port to unclot it and despite my concerns, no one seemed to think that my neck was any issue. All the medical personnel figured that any real problems from the port would show up on the scans.

Guess what! Without the iodine iv contrast, the radiologists could not see any blood clots or any stenosis in the scans. So, starting in the March of 2022, my face began to swell (during my allergy season) and everyone figured it was about my allergies. They completely ignored my other symptoms: difficulty breathing, dizziness, eye issues, loss of mobility in my upper body. It wasn't until June, after 3 ER visits and a whole lot of dr visits that anyone saw the clots. After anticoagulants and a thrombectomy, the drs told me I was fine. I kept saying that I was not fine. In August, 2022, my port was removed and it was discovered that I had 95% stenosis in my superior vena cava (svc)! They did the angioblasty and that finally fixed it. It took about a month and a half before I felt mostly normal.

I had FOUR risk factors for blood clots: having had cancer, the port (the biggest one for me), being on Ibrance, and having had COVID in February, 2022. I didn't realize that I had so many risk factors and I thought the doctors, who should know that and whom I saw on a regular basis, would have been monitoring me. It never occurred to any of them that because I couldn't have the contrast, I really wasn't being monitored for blood clots and the clogged port and swollen jugular vein did not trigger them to ask me questions or to physically examine me. In all, I saw 3 pcps, 2 oncologists, 1 nurse (in the infusion center), 4 allergists, and one pulmonologist. The last allergist was the only one that recognized that I had an emergency which caused me to storm into my pcp's office which got me into the ER.

Moral: Changed pcp to an extensivist (sort of like a concierge dr with less patients and the ability to stay on top of everything). Got a regular hemotologist to monitor the blood clots. Am way more educated about blood clots and potential side effects of the meds. I have left out some details, but the general story is accurate.

Stay safe.

Corby

Comments

  • oldbeauty
    oldbeauty Member Posts: 366 Member
    #2

    Corby, Thank you for this. Very scary stuff. I am galvanized to action now because I have experienced similar symptoms. First, I, too, being a long-term survivor with several recurrences who gets CTs at 6-month intervals, began to feel a sensitivity to the contrast dye. When they would release the solution I would get a sensation of my tongue swelling. It did not last more than a second or two but I mentioned it this past September, and they would not proceed until I'd taken proper preparations. These were doses of Prednisone 13-, 7- and 1-hour prior to the scan--the same as they would give you for an allergic reaction. The nurse told me this had to be done because there was no way for them to tell whether the next infusion would push me into full-blown anaphalaxis, and, he said, "you don't want to experience the aftermath of that...rush to the ER, intubation, etc". I did the protocol and everything was fine. I'd recommend you inquire about this pre-treatment as a possibility for you. The one downside is that that amount of steroids made it impossible for me to sleep that night at all. I was wiped out the next day but slept well that night and was OK after that. I don't look forward to that again in the future but I am hoping to reduce scans to once per year scans if my next one in March is clear.

    Now, second, I still have my port 5 years after chemo because I likely will need it again someday since I am a recurrent survivor albeit in remission right now. I also felt a tightness in my chest this year that seemed to me to be in the vicinity of the port. After stretching exercises didn't do anything, I realized I'd let too much time go by (maybe 6 months) between port flushes. It seemed like the port flush did eliminate the tightness. But yesterday I was poking around there with my finger and I felt a small raised area right at the base of the half-moon port well. Immediately, I thought clot and that scared me. It was gone the next day, but I am certainly going to pursue this. I have not experienced the most alarming of your symptoms but it is a wake up call nonetheless.

    Thank you so much for sharing. Best wishes for your continued recovery. Oldbeauty

  • Mercorby
    Mercorby Member Posts: 97 Member
    #3
    https://csn.cancer.org/discussion/comment/1703149#Comment_1703149

    Oldbeauty, please stay on top of this. The first time I was in the ER, the drs misread my ultrasound and sent me home. I had a CT scan without contrast during the same visit. When I finally got an mri on my third visit to the ER, that's where they saw the blood clots. It seems like the mri was the only way for them to visualize them because they couldn't use the iodine iv contrast.

    Be very specific about your symptoms and ask to be referred to an interventional radiologist (that's who put your port in). These guys and gals have been seeing more and more problems because people are keeping ports and other devices in their bodies for too long. I don't know why that isn't a discussion with the oncologists. I'm in the same boat as you. I have well-managed metastatic endometrial cancer that will continually return and I will always be on something to handle it.

    As far as pretreatment, I did the required pretreatment for the thrombectomy and for the when they took the port out and angiogram. The second time, I had a break through anaphylactic reaction. My allergist, hematologist, and extensivist (pcp) all believe that I have MCAS (Mast Cell Activation Syndrome) because of my response. So now I have an even more heavy duty pretreatment plan. The scan radiologists will not give me an iodine iv contrast no matter what, so that plan is also a work in progress.

    Many people have their ports for a long time without any problem. But nowadays all of the drs are specialists and have only ten minutes to see a patient and read their charts, so we have to be our own strong advocates.

    Best wishes to you.

    Corby

  • oldbeauty
    oldbeauty Member Posts: 366 Member
    #4

    Corby, Thanks for your response. I wondered what specialty put in the port, and now you saved me the effort of researching thru my patient portal to find out. I am going to request a consult with a provider my oncologist would refer me to if I wanted the port removed. Best wishes, Oldbeauty

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