Posted on: Oct 17, 2007 11:29AM, edited Oct 17, 2007 11:29AM by lionessdoe
I had my Port put in yesterday. I never made it in to work today. Last night and this morning it hurt to breathe, laugh, cough, clear my throat, talk and a simple belch felt like I was giving birth through the wrong end. I took pain pills and slept most of the day today. Couldn't sleep at all last night cuz the pain pills didn't even touch it then. I can't sleep on left side due to lymphedema, sleeping on right side last night became impossible due to site of port. Pain is down to tolerable now except I have a horrible headache. Who are these people who got up and went right back to work the next day? Is it just me and my body?
Posts 1 - 30 (39 total)
Oct 17, 2007 01:33PM whoopsiedoodles wrote:
I agree. My port felt yucky and I felt like I had a foreign invader in my body. I did have discomfort, but I was irked that I wasn't allowed to pick up my son because I thought, "it doesn't hurt THAT much!"
Is it possible that there may be an infection? Also, I know that the port insertion is a very touchy procedure. Could there have been a complication so slight that they didn't even catch it? I agree with alwayshope, call your doctor right away.
Love and prayers, Deb
Oct 17, 2007 02:10PM nash wrote:
I actually had a really hard time with my port insertion. I was surprised, b/c people were saying how easy it was. Not for me. It hurt as much as the lumpectomy. It took about a week for the whole thing to calm down and now it's just fine.
Oct 18, 2007 08:38AM 3boys4me wrote:
I had my port put in at the same time I had my mastectomy and the honestly hurt more than the mastectomy. It was probably the worst pain I've ever had. The good news is, the pain did go away within 4-5 days but it still feels strange.
Based on the port insertion, they'd best knock me out good when it's time to remove it!
Oct 18, 2007 08:59AM sharebear wrote:
After having my port put in they expected to access it the next day for chemo. It was very sore and I was not looking forward to them poking it. (I wasn't nervous about the chemo as I'd been through this 12 years ago and knew what to expect). They took one look at my port, put me on antibiotics and said lets wait until next week. It even looked red and sore to them. My body just doesn't like foreign substances in it. I even reject the disolving stitches. My body doesn't disolve them they all of the sudden surface and poke out.
Last week I had my port removed and it looks as irritated as it did when they put it in. It still looks like it's in there. And of course I'm rejecting the stitches again.
I know it will settle down and heal and it served me well this year. It does make the whole experience easier. Especially since part of my treatment was weekly.
I'm glad I went with my tram...my own muscles. If I had implants I would have hated to reject my new boobs too. Did I mention I'm also alergic to the adhesive on the tape and bandages. I even had a reaction the to paper tape this time! Blisters!
The more chemicals they put in me........the more reactions I find myself having.
Oct 18, 2007 08:23PM lionessdoe wrote:
You sound so much like me. I have a strong history of adverse reactions to medications. My body does not absorb the dissolvable stitches either. My body wants to reject this port. Pain has subsided to tolerable, but is spreading to right side of head, right jawbone down shoulder, into arm just less intense. Even my right eye feels pressure. My neck feels like someone is squeezing it all the time.
Sometimes I swear, it is just a cruel joke to give someone a brave spirit and a weak body. I wonder what it is like to be one of those people whose bodies just take it and run with it. I have always been overly sensitive to so many things.
Holding on to see if it keeps getting easier to tolerate. But my 'inner adolescent' wants to just tell my doctor to get this thing OUT of me!
Oct 22, 2007 12:20AM red5902 wrote:
Like 3boys4me I also thought it was worse than my mastectomy. My port is also deeper than most and at a tilt so they have to use a larger needle to access. I had pain from shoulder to neck for approx 8 days after. I slept on the couch rather than my bed as it was easier to sleep on my back and not have a tendency to roll to one side. My stitches did not dissolve so I went on one round of anti-biotics. Went for my next chemo and the nurse told me I was neede to go to emergency after chemo to have the doc take out my stitches. Anti-biotics round two and now healed. Still glad I have the port. I can't imagine using my tiny little veins. Also had a blood transfusion last week and was glad to have the port for that.
Lionessdoe - it will get better but unfortunately it just takes a bit of time. Hugs.
Oct 22, 2007 05:24AM Mamasj wrote:
It also hurt me more, when my port was put in, than with my lumpectomy, snb and re-excision. I slept in a reclinerb because it was easier for me to get up. After about a week, it was a lot better and I had my first ACtx. Now I am done with chemo and waiting to get the port removed. It sure was a lot easier having the port. It get's better!
May God Bless
Oct 22, 2007 05:33PM maxgirl wrote:
My port site has been nothing but a pain, even though I would do it again because of my frail little veins. I had the lumpectomy on the left and the port on the right, and for a couple of weeks I slept trapped between a wall of pillows on each side so I didn't roll over.
When the port came out, I developed a minor infection which cleared up rapidly. But six weeks later the scar area is still sensitive, and every now and then the muscles kind of clench up if I sleep on that side.
I thought that I had a really bad infection because I had a skin reaction to the adhesive. Ditto on the reaction to paper tape, Sharon. I didn't get blisters but some red bumps that hung around for a while. It's like having a giant paper cut around the whole port area.
Oct 22, 2007 06:24PM sharebear wrote:
I just pulled out one of those darn "dissolvable" stitches out of my port. About 1 inch in length. It actually felt good to get it out. Maybe it will start to heal a little bit quicker now. It still looks like the catheter is in. You can see the red swollen line up to my neck. In know it's healing cuz it itches. It's not infected. As a matter of fact they gave me so many darn antiobiotics to make sure that they gave me a yeast infection. Thank goodness that's a one pill cure!
Oct 23, 2007 09:25AM , edited Oct 23, 2007 09:26AM by Zelda
My goodness! My doctors made me seem like I was crazy and a big baby because of my reaction to the port. I agree, it seemed more traumatic than the mastectomy. But thank God it only lasted for about five days. I actually felt like someone was trying to choke me. Awful awful awful! But now I am glad to have it. It beats using the veins.
Oct 23, 2007 09:31AM sharebear wrote:
Oh, I agree. I say it was a love hate relationship. I was definitely glad I had it. Having had chemo 12 years ago without a port, this was much easier with one and glad I had it. With that said, I'm also glad it's now out!
Kind of the same relationship I have with my teenagers. Love em to death....can't wait till they move out! Ha! Ha! Ha!
Oct 24, 2007 07:03AM JoelKM wrote:
My wife had some complications with her port.It took a while to heal but that eventually resolved. A couple of months later she developed a pretty extensive blood clot in her interior jugular vein. We went to the hospital to have a radiologist look at it.He said that this type of clot was not life threatening and that it would resolve over time, which it has.
One thing that he did tell us though was that ports placed into the interior jugular vein cause fewer complications that those placed in the subclavian vein. Of course, our's was subclavian. I decided to check out the facts to see if what he was saying was true. It turns out that he was right. According to a couple of studies, there are about 20-30% fewer complications with ports placed in the interior jugular than with those placed in the subclavian. I let my surgeon know about this. Hopefully,the word on the latest research will get out.
Oct 24, 2007 07:21AM Nicole wrote:
I have to tell you my port hurt more than my lumpectomy. Honest. I think the location of it had everything to do with the pain. It's high up close to my collar bone, and we don't carry a lot of extra tissue by our collar bones. The breathing could be a side effect from the anesthesia. When you get put to sleep and a machine is breathing for you sometimes it expands tour lungs more deeply than we do on our own. That is the explanation they gave me for feelimg a heaviness in my chest. I wasn't able to get back to anything for a couple days. Take the time to heal, your body is asking for it. I hope you get some relief from the pain soon. Hang in there sister!
Oct 30, 2007 09:45AM mrs7148 wrote:
I just had my port put in yesterday and I feel fine today, with the exception that my neck feels stiff. Sorta like I slept wrong. My surgeon put the port lower on the chest, just where a sports bra strap starts to widen for the cup. It is a bit hidden and wont be aggrevated by a seat belt. He used the jugular vein which is why my neck is sore.
I had local anesthesia with just a shot to relax me and i was home in an hour afterwards. I get my first chemo tx day after tomorrow, but since it took 3 tries for the surgical nurse to get an iv in me for the port surgery, I am sure it will be better to have the port!
Oct 30, 2007 11:50AM dajawood wrote:
I had my port installed in April '07 and it really didn't cause as much pain as yours. However, it's been in for months and I still can't sleep on my left side. Like you, I have lymphodema in my right arm and can't sleep comfortably on it either. I lie on my back most of the time which is a bummer. The port has been very nice for chemo but I can't wait to get this object out of my skin. It sounds like you may need to have your port checked by the doc.
Oct 30, 2007 11:53AM dajawood wrote:
Also, I agree that the port is worse than the lumpectomy. Mine is close to the collar bone where there isn't much fat to cushion it. I sure would of had it installed somewhere else if I had of known how aggravating it would be. I have stage IV b/c her-2 positive so I guess I will have the port for quite awhile.
Nov 3, 2007 08:23AM , edited Nov 3, 2007 08:34AM by sammysgammy
OMG, this was my story, I even had a terrible infection, I called the doctor who talked to me like a nitwit, but gave me an appointment for the next morning, I pointed out a raging white pus filled looking infection, he assures me that there was no infection, and nothing wrong with me and sent me home, then never ever called to follow up and was all put out when I called to inform him that two days later my oncologist saw my now raging bright red infected area and prescribed two weeks worth of antibotics. It eventually cleared up, but I had every one of the painful situations you describe and I am happy to tell you that in a month's time it all fell into place and I no longer have any pain what so ever, I believe that the infection was the cause of all of the above, at one point the oncologist suggested that it (the port) was floating and that I may have to have it redone, I was devastated and terrified of going through that but that also was not the case, just the infection needed time to clear up ! My surgeon for my mascetomy did a much better job, he was so competent and skilled that I started to think of him as God like, too bad he did not perform the port surgery and I had ended up in the hands of this butcher, I am now afraid of getting reconstruction surgery because of this trauma ! Mine is also uncomfortable to sleep on and I have no choice but to sleep on my back, can't wait to have it removed, the scariest part is that I have to go back to Dr. Butcher as I don't believe any other doctor will touch a port that another doctor has inserted, I hope I am wrong ! I read above about the locaton making a difference Interior Jugular vs subclavian, I have never heard this and I am now curious about what mine would be considered, I will have to look into it, I would like to know now for sure ! mine is located parallel to my armpit just above my remaining breast! you made a good point! thanks for all your input !
Nov 3, 2007 09:04AM honeygirl wrote:
Hi sammysgammy , just thought I'd share with you that I saw my bs for a check up and showed him I still had my port in. He asked why and I told him my onc wanted it left in , in case of reoccurance. I want it out , and he said he would be glad to take it out for me and he wasn't the one who put it in. I would ask your bs if he would take it out instead of the psycho surgeon! Good luck to you.
Nov 4, 2007 07:09AM , edited Nov 4, 2007 07:11AM by mthomp2020
I had my port put in under local anesthetic with conscious sedation, and went home within about 2 hours afterward. I had neoadjuvant chemo, so i hadn't had my mastectomy yet. That day, I felt like I'd been kicked by a mule in my chest. When I woke up after the surgery, I had pain in the back of my shoulderblade - I thought, why would that hurt?! They have to tunnel under some muscles, so that can make you pretty sore. I've had my mastectomy since, and the port install actually was more painful because of all the muscle pain. It was a lot better the next day, though.
Unfortunately, my seatbelt goes right over the top of the port, as it's on the left side, so I have to put a folded towel over my shoulder. Sometimes have to be a bit careful about sleeping on that side, too. I'm currently trying to find comfy mastectomy bras, but so far the wide straps seem to rub against the port. Wish the surgeon had placed it a little bit more toward the center of my chest, but probably didn't have enough room. Finding a sport bra is going to be interesting! Since I'm stage IV, it's pretty much permanent, so I'll just have to deal with it.
Nov 12, 2007 02:36AM Terry49 wrote:
My port insertion was no cakewalk either. I was allergic to the tegraderm, tape and sutures. The area was bright red until I pulled off all the tape. The sutures are working their way out.
Ever since the port was put in, I have been feeling a "paper-cut" sensation near the top bend of the tubing which is near my clavicle.
This Thursday I had a port study. Radiology injected a dye into the port and watched for leaks. Well, the port doesn't leak. However, it is working itself out of my aorta and it will need to be replaced for further rounds of chemo. Since I only have one more round of A/C left, fingers crossed, we are hoping to squeak by.
I do not have to do the the Taxotere round due to new findings on the affectiveness of "T" with my type of cancer. Yeah, at last, some good news.
Still, all in all, I was glad to have my port due to sucky, rolling tiny hidden veins!
One more kicker, I grew a fibrious growth around the tip of the catheter so that fluids could go in but no blood could be drawn.
I found that using the veins on the back of my hand with a 23 ga. needle to be the easiest and least painful way to get blood drawn.
Nov 12, 2007 01:02PM Jaanee wrote:
I was wondering if anyone has had problems because the port was placed in the wrong vein??
My port insertion was difficult, according to the surgeon, she said my collar bone was big and gave them trouble. I stayed home the next day only as a precaution to minimize bruising. I got a WHOPPER of a bruise anyway. All pain resolved pretty quickly but the skin over the port stayed "touchy" for several weeks. I have a "power port" and the three raised dots are now very obvious under the skin. Unfortunately the ER staff has little or no knowledge of this port and have refused to use it. However it has worked well for chemo delivery.
Last night because I had a fever 101+ I ended up in ER and got a chest x-ray. A few minutes ago the radiologist called to say they think the port is in the wrong vein! Now they want to do a dye-study. Does this mean they are going to want to take it out and put in a new one? They haven't been able to draw blood from the port for the last two treatments but delivery seems to have gone smoothly. Shouldn't something like checking placement have been done before I left the operating theater after the port was put in???
I feel like a practice pin-cushion.
Dec 1, 2007 01:47PM , edited Dec 1, 2007 01:54PM by sammysgammy
Hi Janee, I had commented earlier, I had alot of problems with my port inserted by the dr from hell, now, this weekend, Nov 24th, four months into my chemo I was very short of breathe and was rushed to the ER and admitted for 4 days of every test known to mankind, because of the port it turns out I have a blood clot in my lungs and had to be put on blood thinners to dissolve and prevent new ones, my heart has also been affected to a slight degree and now I have to have a mugascan before every third chemo until I am done a year from now, what a nightmare, I can't even begin to describe it ! all because of this inept dr. I wish I could post his name on here and spare anyone else the agony of what I am going through !
Dec 9, 2007 08:55AM jane1607 wrote:
Wow, I had one put in at the time of my masc in 2004 and never even knew it was there throughout the whole chemo process! (Except I looked like a droid with the round bump standing out of my chest) I guess I lucked out. The one thing I will do differently if I have to have another port though is to insist they put me under for the removal. They did mine under local and it was horrible. They didn't believe me when I said I could feel what they were doing and they kept yelling at me for moving! Jerks! If its that important to be motionless, knodk me out already!
Dec 9, 2007 04:42PM Terry49 wrote:
On my last round of chemo, my port infiltrated. If you feel burning when the nurse puts in the heparin, SAY SOMETHING. It should never burn. I said something and the nurse poo-pooed it. The infusion nurse was furious after noticing my swollen shoulder, made a dive to stop my IV and I repeated that I had told the nurse it burned. She said it burned because it was infiltrating and that she wouldn't even tell me what would have happened had the "red medicine" had gotten to my skin. The infusion nurse had to sit with me and manually inject the meds into a new IV site on my hand. She had to draw back blood every few cc's to make sure she was still in the vein. I think she saved my life. I have been told how bad it is if the red med gets into your skin. It's not pretty. While all this was happening, I was 'gently encouraged' to not flee the building and to finish the infusion.
One other piece of port info I have to pass on is: If you get cysts under your skin when your white cells go down, DON'T SQUEEZE THEM. I just wanted to relieve the pressure, put heat on it. Squeezing a cyst may cause the cyst to rupture and cause the toxins to go into your blood stream and infect the port.
I too am glad I didn't get inplants, I would probably had an allergic reaction to them too.
My port is coming out much sooner than planned now.
One other complaint I have with this port is that it has a 'nipple' sticking up. I was told it helps the nurse with location, ect... However, since the skin is so tight over the port, that little 'nipple' is starting to erode the under side of my skin and is very tender. Another invention designed for men and used on women!
I don't mean to scare but to forwarn you. This is serious business even though it looks like a simple part of the chemo experience.
Dec 11, 2007 10:44AM , edited Dec 11, 2007 10:45AM by sammysgammy
hi Jaanee sorry I did not check back sooner, I was getting extremely short of breath, like you if I fell asleep on the couch I would wake up gasping for air, kind of like I forgot to breathe, but it was more than that , if I walked a flight of steps or even from one room to another I was wheezing. I also have extreme weakness in my legs and find it hard to even walk but that the dr's determined is from being anemic and low counts, thank God not too low but low enough to cause the weakness in my legs !