Possible clot above port site, and CT scan after rads

[Brenda_D]

They have never been able to draw blood from my port, and didn't seem too concerned about it, since they could administer my chemo and Herceptin, and flush it ok.
I had my 3rd Herceptin last Wed, and felt some chest discomfort, and dull ache on the port side, around and under that arm. On Friday I just felt a little "off' and took a nap. When I woke up, my neck hurt a little and I felt a lump at the base of it. I looked in the mirror and could see a good sized lump, that looked like it contained fluid.
I called my GP's office, since she deals with that stuff for me, and she was out, they recommended I go to the ER because is was directly above my port.
At the ER, they did a CT, but could not exclude a vein thrombosis, so I go back for a Doppler on Monday. They sent me home with an antibiotic (just in case) although blood did not show high WBC counts. (They were in fact low, possibly due to the recent Herceptin).
They didn't seem too worried, but I still have a large lump at the base of my neck. :0 Possible clot isn't supposed to worry me?
I got copies of my CT scan and report.
I popped the cd in and took a look. Of course I don't know what I'm looking at as far as the veins. I can see the port and where it threads into my vena cava.
On the other breast, I could also see what looked like "sprinkles" (for lack of a better word), above where I had my lumpectomy. When I went down through the scan, those spots lit up as star bursts. I'm wondering if that could be radiation residue? I just finished rads about 3 and a half weeks ago.
They did not use any type of seeding for rads, tho, and it is not directly on the lumpectomy site, but at the side of the breast where it meets the arm.

[Chelee]

Brenda, I don't have a answer for you...but I can't help but wonder why they would send you home and tell you to come back for the doppler on Monday? Especially since they couldn't rule out a clot?

I went into the ER on the weekend due to a possible clot and they would NOT let me leave the hospital until they did the doppler. I wonder why they didn't just do the doppler right then? Thats awful that you have to wait and worry till Monday. Maybe the CT can't totally rule out a clot...but yet it showed enough that the probability is not very likely. But thats awful you have to wait till Monday.

As to *trying* to read your CT scan I can tell you I did that myself and all I did is get myself in a panic over nothing. I read all kinds of things into mine because I didn't have a clue what I was looking at. I had myself having all kinds of problems. So don't try to read your own scans...its only asking for trouble...ask me...I know. lol :) Behave yourself...put that CT away until you can get a tech or someone trained to read it to you in person. ;)

Chelee

[Brenda_D]

Hi Chellee. They didn't do a Dopplar because the person that does them was gone for the weekend.
Kind of made me wonder too.

As far as the scans, I always get a copy and look at them. My sis (who is a surgical tech) thinks the "sprinkles" are staples. I didn't know they'd leave staples inside of a person? She's going to ask her boss, and also told me to get a copy of my surgical report.

I'm going to take the scan to my GP too, and see what she thinks about the whole thing. She's the one doctor that I trust to tell me everything.
Seems some docs forget to fill you in, or just gloss over the surface.

[tousled1]

Brenda,

I had a port related clot shortly after having my initial port put in. I noticed that the vein right above the port looked bluged and the area around the port was tender. I mentioned to the oncologist when I went for my treatment and she immediately sent me for a doppler/ultrasound. It showed I had a clot. I had to give myself a shot in the stomach every day for a week and then took coumidin. Had to get my blood checked every week so that the coumidin could be adjusted. When I had my surgery I was taken off the coumidin a week or ten days before and never had a problem since. I have since had that port taken out -- thought I was finished with chemo. Now I just got a new one put in. Make sure you get a doppler/ultra sound ASAP.

[StephN]

Hello Branda -
"Large lump at base of neck" is strange. Sounds more like a node to me then from a clot.

Have they talked about a dye study? This is the most effective way to see why your port won't draw.
At my cancer center if a port will not draw, they don't want to use it any more. My first one got to the point where it would flush and infuse but not draw.

I had a new port put in last Aug and that has clotted, but not at the tip. Rather along the sides of the catheter. This was very hard to see on the Doppler, which was the first test I had in searching out my problem. The Doppler was inconclusive and the tech was very thorough in the exam and went beyond the immediate left upper chest/shoulder area and down my arm.

The test that DID show the clotting area was called a CT Venogram. So just letting you know that you may need more than one test to find your problem. Good luck!

P.S. My staples show up as a neat little circle where I had my lumpectomy. A series of short thin lines.

[Brenda_D]

Thanks ladies.
I really think it's a node, but not sure why it would be so swollen.
They haven't mentioned dye study yet. I'll see what they say after the Doppler on Monday.
I'm glad I'm not the only one with with staples, but mine are no where near nice and neat. I counted at least 26, and they are in between my Lumpectomy site and the Axillary node removal site. My CA was medially located, not on the outside of the breast. At least I have a clue as to why that area has been bothering me. No-one told me they left in staples, and I assumed they used dissolving stitches.
Over all I think the scan looks good though. I didn't see anything ominous.
The positive IM node appears smaller, but I'll wait until I get my Pet/Ct in a few months, to see what's going on with the BC.

[weezie1053]

Brenda,

I too had problems with my first port. It would flush, but it would not draw blood...same as yours. I am thankful that one of the lead nurses made some noise until she finally got the attention of the Oncolologists. It was replaced, and I have not had any problems with the second port. Good luck and make some noise on your next trip to the Fusion Center.

[Lolly]

I don't want to alarm anyone but probably this will alarm you. Just remember what follows is a RARE, REPEAT RARE, complication:

Ports that don't flush, combined with clots, can signal a possible catheter fracture.

I had this complication a few years ago after continual problems getting a blood return, even though the port would infuse. I noticed bruising after an infusion, and went in to have an ultrasound etc.The cause was eventually determined to be at the clavicular junction where the vein in a chest placement passes through the clavicle junction to loop around to the heart. Apparently my physiology is such the passage for the vein is especially narrow and therefore the vein "pinches off". Eventually the wear and tear on the clavicle caused it to break off. This process took about 2 and 1/2 years in my case.

This can be a serious medical condition, so any symptoms of a clot or malfunction in a port line MUST be investigated thoroughly to find the cause and sometimes it takes a very squeaky wheel to get the grease needed to put the wheels in motion.

I had to have an angioplasty-type procedure to retreive the catheter fragment, and then had a port replacement which threaded the catheter through the shoulder vein to bypass the narrow junction in my clavicle.

Again, this is a rare complication but it can happen. Please be satisfied that your concerns are being adressed.

<3 Lolly

[Brenda_D]

I talked to my doctor's office today and they want me to come in after my Doppler, for a EKG. I don't think it's my heart, but after she asked what symptoms I'm having, and taking into account the meds I'm on (including Herceptin), they want to rule out heart problems.
I'll let you all know what I find out, but I really don't think it's anything serious. I really think the lump is Allergy related, or maybe a small reaction to the Herceptin I had last week.

I don't know about not being able to draw from the port. I'll follow up on that.

[Brenda_D]

Update-
The EKG was fine, and the tech that did the Doppler said everything looked ok, but she (obviously) couldn't see behind the port area.
The nurse practitioner said I had liquid in the ear on the side that's swelled, and gave me some stuff for allergies.
So that's the good news. Not as good- while I was there I had her look at a couple little crusty growths on my ear, and it looks like actinic keratosis and need to be taken off. Not a huge deal at this point, but could be precancerous (squamous cell), if left alone.
I just lost a family friend to melanoma 2 weeks ago, and 2 of SIL's are undergoing removal of skin cancers (basel cell and melanoma) at this time. I sure don't want to be worrying about skin cancer on top of the BC.
I also found out from my sister's boss, the the "sprinkles" are surgical clips. No wonder that area hurts.

[Brenda_D]

New update-
I saw my Rad Onc today and he was very interested in the neck swelling.
I found out it's in my supraclavicular node area. He immediately said "we need a ct scan", and I told him I had one, so he called the hospital for the report. He said if it doesn't go down soon, to let him know.
He asked if had any pain in areas other than the breast, like the back, and I said a little. (the original pet/ct said I had spots in my lumbar spine and pelvis that were suspicious for mets)
I don't think I have anything going on there, but I was happy to see he was concerned, seemingly more so than my regular Onc.
He looked at the radiated area and said it's still reacting to the rad treatment, which I take as a good sign that the rads are still doing what they were meant to do. (I am 1 month out of rads)

[Sheila]

Brenda
My mets to the supraclavicular nodes seem to appear out of nowhere when I was going through the tissue expander phase of reconstruction...everyone kept saying it was a reaction to the expander, much like we get swollen glands in our neck with infection, sore throat etc...I insisted on a biopsy, sure enough, Her2+++ Breast Cancer....ER-PR-, just like my original dioagnosis(back then I was node neg.)
If it doesn't resolve, have it checked...seems like this is a popular place for mets locally.