Blood clots

Suzmaree

Hello everyone, this is my first time posting, I'm usually a lurker looking for information but haven't seen a lot on this topic. I was diagnosed with Stage II, Triple Negative BC last September, had a lumpectomy and node biopsy shortly after diagnosis, no node involvement. I began the usual chemotherapy after lumpectomy; four rounds of adriamycin, four rounds of taxol. After the first round of taxol I had pretty severe shortness of breath and weakness which progressed for five weeks until an echocardiogram was done. Short story, they discovered by CT scan two clots pressing against my heart, multiple small clots in my lungs, and three clots in my ankles. A catheter was put in my neck to dissolve the clots on my heart, I was on heparin IV while in the hospital and then switched to subq blood thinner twice a day which I currently do at home.

It was only after this episode that I found out some cancers and their treatments are higher risk for clots. I also have a family history or clots (mother and uncle), so I believe this was just a perfect storm for me. I do remember my oncologist asking about family history of clots at the beginning of my BC diagnosis but for some reason she dismissed this as not significant and never provided information on clot possibilities. Although I have some thoughts about this, it is not the reason for my post.

My main concern is that I can find little information on how this might affect one's prognosis for the future. They told me the clots will likely never go away but should be managed by the blood thinner which I may be on for life. What I've read says that cancer patients with clots have a poorer prognosis and clots are the second leading cause of death in cancer patients other than the cancer itself. What it doesn't say is if these deaths occurred while people were on blood thinner or prior to diagnosis of the clots. I worry that with so many clots I had, one will slip away to my heart or brain.

They also say clots are more prevalent in people with already metastic cancers. Could this mean I have cancer in other parts of my body that I'm not aware of yet ? The CT scan showed no new tumors in my lungs or abdominal area.

I had my last infusion a week ago and will see my oncologist in April for follow up and will ask her these questions but in the meantime I'm interested to hear what other peoples experience and knowledge about this kind of thing is. Yes, I'm a little worried. Every time my breath is a little short, or my pulse oxygen dips I think, is this it, did a clot slip through ?

I appreciate your feedback. ❤

Beesie

Hi Suzmaree,

I'm afraid I can't answer your questions but wanted to welcome you to the board.

I do know that a cancer diagnosis does increase the risk of blood clots. In fact on doctor's orders I had a visit to the ER ten days ago because my doctor was concerned about a possible clot based on other symptoms, combined with my history of breast cancer and family history of clots; fortunately there was no clot in my case. I can certainly understand your worry and your questions, now that you're have the clots.

Hopefully someone comes by with experience and information to share. What you can also do is use the search function on this site to search for other posts where blood clots are mentioned, and then read or join those discussions.

flashlight

Hi, I don't have any experience with this, but found justducky1 post similar to yours. Good luck to you..

I had to have a n ICV filter inserted because of the blood clot issue. This was removed shortly…

In the 'Triple-Negative Breast Cancer' Forum

Feb 10, 2021 10:40PM by justducky1

Moderators

Welcome, Suzmaree! We're so sorry to hear that you're dealing with this worry. As flashlight mentioned above, there is some discussion on this connection in our TNBC forum that you might find helpful! https://community.breastcancer.org/forum/72/topics...

The Mods

Suzmaree

thank you, I’ll check it out!

MelissaDallas

Before my surgery for ovarian cancer a few small clots were noted on my chest CT. I had an IVC filter inserted and injected Lovenox daily on release from the hospital for six months. IVC filter removed at six months. They ran extensive panels on me to see if I had any genetic or other clotting factor issues and I do not. Couldn’t take prophylactic tamoxifen or raloxifene because of prior clot history

Spookiesmom

I had clots in my leg and lungs, waaaay before cancer. 3 days in hospital, levaquin injections 5 days, then on Coumadin/warferin for life. Then came cancer. Did the poison slash burn, then aramidex, and tamoxifen. No clots. Had reoccurrence. More surgery and rads. Currently on ibrance/letrozole, no clots.

I go every month, or more for PT/INR to monitor blood and Coumadin. I’m almost always in range, or just a little bit off. I prefer this as opposed to some of the other thinners available now. Easier to stop a bleed.

None of my drs seem concerned about more clots as long as I’m in range. I am considered stage 4 now.

Melbo

I don’t have much to add to the conversation, but I had a blood clot in my jugular vein and sub-clavicle vein while I had my chest port in for chemo. My oncologist had them take the port out and put me on blood thinners and reassured me that the blood thinners would resolve the problem. I don’t have a history of clots and none of my family does either.

I did some research after I got my clot and based on the facts you posted it looks like we found a lot of the same information, just know that a port will also increase your chances of clots. My oncologist said if I didn’t mind staying on blood thinners I could keep my port since I will be getting infusions of herceptin and Perjeta for a few more months, but I didn’t want to stay onthe thinners that long and I still had to get surgery, so it was just safer to remove it.

Spookiesmom

Forgot to say, my port has been in for over 8 years.

Melbo

spookiesmom — from what I saw in my researcha clot from the port was a rare complication. It’s just something to be aware of for those already prone to clots.

Suzmaree

Thank you everyone for taking the time to reply. I did mail my doctor with my questions. She said she understood my concerns (that's good) and that it takes time for clots to resolve, especially with as many as I had, and may take 'some months.' So I guess don't worry too much because I'm still feeling weakness and some shortness of breath (which is not as bad as it was before they discovered the clots). She said she has also known people with nonmetastatic cancers to have clots, so I'll try to work on that worry for awhile 🙄 and that she plans on genetic testing to confirm whether I have the predisposition or not.

I had no idea they left the ports in for years! Mine doesn't give me issues and honestly I like the idea of knowing it's there if I need it. I guess like everything everyone here is going thru, it's a day at a time. I'm supposed to make an appt for radiation but I feel like I've had more healthcare than I can stand recently and am procrastinating. Supposed to get first dose of COVID vaccine tomorrow.

Wishing you all the best.