TERRIFIED of getting my port taken out - how bad is it?

CrawfordsMommy

Preface: I had my port put in the day before my first chemo. Getting the port put in was traumatic for me. I was supposed to be in "twilight sleep" but something didn't work, I guess. I was awake and completely alert for the entire process. I suppose I was quite a bit "on edge"!

They kept shooting me up with more stuff to make me sleep but I just couldn't drift off for some reason! While I didn't feel any real pain during the procedure, I felt everything that was happening, the ripping and the tearing of my flesh. It was creepy. I thought, "I really didn't need to feel all of that..."

I was sore around my neck for several weeks afterward. I was probably tense the whole time they were working on me, which I'm sure didn't help matters.

Now it's time to have it removed...

I'm nervous about having it taken out due to this bad experience I had, so I'm asking... how bad is this going to be? How long does the procedure take? I want the port taken out, because it sticks out a lot, and rubs on my clothes and hurts sometimes. There is no more use for it now. But the operating room environment, the smells, the machines, the beeps, the language they use (all the confusing medical terms), I find it overwhelming, and then they start to cut on you, and you have to lie there and endure it all... it's just a bit much, you know?

I have requested a different surgeon at a whole different hospital to get this thing taken out. I'm afraid that this could be a repeat of last time.

Can anyone weigh in with their experience of having their port taken out? Did it hurt a lot? Were you sore for a long time afterwards? Do they make you stay awake for that part, too?

snowsogal

Dear Craw: I am so sorry for your chemoport insertion experience. Fortunately, my twilght sedation worked because I did not feel a thing. My insertion was done tn the hospital, and anthesiologist gave twight. Unfortunately, not the case when it was removed. It was taken out in the doctors office, with only a local numbing injection. I was awake the whole time. They put a drape over you so you can't see what they are doing. The numbing injection was the worst part. Removing it was not painful at all. It took quite some time before it stopped hurting for me, but everyone's experience is different. Don't be alarmed but the area will look pretty bruised for a while.

If you are nervous, ask for something to relax you.

Hope this helps

Anonymous

I agree with everything snowsogal said..during removal I was awake, there was a drape, and the numbing part was the worst. I remember listening to the staff talking about their weekends as they went about their business. I think I felt an odd tugging when the port was removed, but not pain. I really don't recall if I was very sore afterward. However, I was given the option to be put out during removal (with twilight?), but opted not to because then I would need a ride. You didn't say when your removal was scheduled, but perhaps this is an option.

ruthbru

They did mine in the hospital setting & I was given something the knocked me out lightly. I had all the same problems with my port as you are having. I truly hated that damn thing. After it was out, I felt immediate relief; a little sore, but a healing sore instead of a constant irritant. The only problem I had was a dissolvable stitch did not dissolve, so I had to go in and get that removed (which was not a big deal at all). You will be SO HAPPY to have it out!!!!!

Italychick

I just had a local, it was done in like ten minutes and I didn't feel a thing, don't be scared, getting it out is way way easier than it was going in

ksusan

Much easier out than in. I had it out in my surgeon's office. Not very painful; immediate relief.

Claire_in_Seattle

Let's put it this way. A whole lot easier than my recent trip to the dentist! Like Ruth, I was thrilled to be rid of the thing. Although certainly glad I had it when needed. Insertion was done at time of surgery.

I also had a local anesthetic, and removal was done by a nurse, not my surgeon. I drove myself home afterwards.

I would rate it about the equivalent to having a gyn exam and test done. Minus the fun of the stirrups. - Claire

CrawfordsMommy

Thank you so much, everyone. I'm a little less afraid now; I guess I've sort of processed all the anxiety. I have the port taken out in two days. I hope that the removal process is like you all said, "better out than in"! It itches and pinches me at times and prevents me from wearing some clothing and interferes with seat belts etc., so I'll be relieved to have it removed.

The hospital called and because of my bad experience, they will be putting me completely to sleep. It will be deeper than "twilight sleep" since that didn't work for me. I have to do the whole "don't eat and someone must drive you" thing, of course, but that's fine.

ruthbru

Let us know how it goes. You will be really, really happy to have it GONE!

Marimucho

Crawfordmommy, I hope you are feeling okay. I am sorry that you had such a bad experience. Gee...I don't blame you for feeling overwhelmed and anxious. I am happy to know that an effort was made to make things better for you when you have the port taken out. The whole idea of the port insertion and removal really scares me. But, I am willing and ready if I have to. We will see.

If you don't mind me asking, do you have an idea as to why I would or would not get chemotherapy? I think my tumor is like yours. Mine is on the left breast, ER+/PR+, HER2- It is 2.5 or 2.9. I got a 2.9 measurement on the sonogram and 2.5 on the MRI. No lymphatic invasion identified, yet. My surgery is January 7...unilateral mastectomy.

I was told that I will not need radiation. But have read many posts where chemotherapy is not part of treatment for the same diagnosis. I know each case is different, history for example, makes a difference. I see that if a lumpectomy is involved, then more treatments include chemo, but otherwise, very few treatments with chemo when mastectomy surgery occurs. I know I could not have a lumpectomy. The idea of no radiation and no chemotherapy makes me very uneasy.

I hope your next days are bright with the port removal procedure behind you. Looking forward to hearing from you.

CrawfordsMommy

Hi all!

Port removal took 1 hour instead of 15 minutes. I was "knocked out" for the entire procedure, and this ended up being a good decision because the port had bonded very well with my body and was difficult to take out. I'm in a LOT of pain. The incision hurts very badly even when my shirt touches it lightly. If it doesn't feel better soon, I'm going back in to have the surgical site looked at. Right now there is a lot of redness, swelling, and bruising.

Marimucho,

They decided on my chemo based on Mammaprint score (similar to Oncotype). My tumor is indeed like yours although a little smaller when it was removed. 2.2cm when removed. No involvement with lymph nodes or vessels. I wasn't a candidate for radiation, due to having a complete mastectomy, so they offered me chemo instead. Once you have your mastectomy surgery, you will be offered chemo based on your Oncotype or Mammaprint score.

Marimucho

Crawfordsmommy, I am so happy to hear things went so much better for you with this procedure. I wish you didn't have to have any pain at all. I wish I could take some of it for you. Still, I am so happy your port is out. It seems like such a wonderful place to be from the outside looking in. Yet your pain is real and I hope it gets better.

Thanks for sharing about your cancer. So far, everything seems to be alike for our tumors. I will have the double mastectomy on January 6. I am not sure how they already know I don't need any preadjuvant chemotherapy as well as radiation down the road. My reconstruction will be done on Jan 6 also, and I will be having expanders put in.

I hope I am a candidate for the Ocotype and Mammaprint testing. It is interesting that I am really hoping for chemotherapy. I know it is just a misconception of mine. I have learned that chemotherapy can also work against your chances for lowering your recurrence rate. I am willing to do the worst of things if it will help me. Maybe my doctors need to spend more time explaining things to me. For now, thank goodness for all of you and breastcancer.org

I hope you are having a nice day. When you can, post an update. I would love to know how you are feeling.

Take care,

Marimucho

CrawfordsMommy

From what I understand, early stage cancers without spread to the lymph nodes will be tested using Oncotype or Mammaprint. I opted for Mammaprint because it tests for more markers and gives you either "Low" risk - no chemo - or "High" risk - chemo. There is no in between like there is with Oncotype. Most likely then, you'll get the Onco/Mamma test after your mastectomy surgery. If the cancer has spread to lymph nodes, as far as I know, you get radiation and/or chemo as a matter of course. My doctor had me get an MRI prior to my surgery so he knew how far the cancer had spread (not much), and there were no "surprises".

As it turned out my incision had got infected (hence the terrible awful pain, redness and swelling) so I went in this morning to the cancer center. They took it very seriously, giving me fluids and another IV bag of antibiotics. They're so good at seeing me on a moment's notice if I need it. I'm home again treating it with warm compresses. Since I have multiple surgical sites and can't shower because of the port incision infection, I get to take sponge baths in my kitchen until further notice. I can't sit in the tub due to having had the vaginal hysterectomy. So, I pretend I'm on "Life Below Zero" and wash off in a bucket of water in my drafty old house in front of a warm oven. I would be upset, but instead I just take a page from my old Dad's playbook and feel thankful that I have good medical care, potable hot and cold running water, good food to eat and a safe, happy home overall. Cancer treatment and pain is, at this point, just an inconvenience.

Ms_Latte

crawfordsmommy,

Good attitude. At some point I moved on from 'What now????!! ' to 'This too shall pass'. I consider a visit to the OR successful if I leave with all my teeth (yeah, I lost 2 to an inexperienced anesthesiologist); I've been prodded and poked and stabbed ; more than 20 strangers have seen my boobs -- and I didn't even make it to Mardi Gras!!!! Inconvenient is the word

Marimucho

CrawfordsMommy, there is nothing wrong with "Life Below Zero" once in a while. You have an incredible spirit and a positive attitude. INSPIRING!!! I hope to be able to handle things as you do when the time comes. I hope you feel better today. Glad you are taking care of yourself and that others are caring for you with such warmth and understanding. Take care.

CrawfordsMommy

Marimucho,

I have had a lot of bad experiences in life (like most people) so cancer ended up being just another 'thing'. At first I freaked out like crazy! I literally lost my mind for a few weeks - would I die? What would I do? Who would take care of my pets? etc. And then I met with my surgeon and got my prognosis/treatment schedule and then it just turned into a thing I had to do. Unpleasant, yes, but something I could handle. I think the 'unknown' was a lot more scary than anything else. I think you will handle everything just fine and probably a lot better than I did. These days I find that I do find great pleasure in doing simple, everyday things without being dead-tired from chemo, and I live a little more in the 'now'. It's a process, and it DOES get better.

And my incision is still ugly, but a lot less "hurty" so I guess that means it's less infected.

Ms_Latte,

Good grief, two teeth! I'd have hit the roof! I hope they compensated you for that!

I lost one of my front teeth from one of my cousins elbowing me in the face accidentally. Fortunately I was able to get a replacement (implant) but it was expensive as all get-out! The pain in the wallet was the one that hurt the most!

As for strangers looking at my boobs, well, I got used to just whipping my shirt off for anyone who asked me about my cancer! Hehhehe! My tumor was popular. Now that I've had mastectomies with no reconstruction, I take my shirt off whenever I feel like it. Nothing to see here, folks! (Except some icky scars.)

Swimsuit season is going to be so interesting this coming year.

UnwillingParticipant

I felt nothing but repugnance for the port and furious that I have to have one.  My anxiety level was off the chart.  When my husband called the cancer center to ask for some relief from the anxiety, my doc wasn't in, so he spoke to another one who laughed at me via him.  Laughed!  They consider this nothing more than a scratch.  I was angrier than ever, and my regular doctor's nurse was very compassionate and called in a prescription for Ativan for me.  That got me through the 3 days prior to insertion, but just barely.  I was given Versed and Propofol and was put completely out.  I don't remember a thing.  When I woke up, I had a very sore throat so I asked if I had been intubated, and they said yes.  They said I moved and yelled so much they had to give me a general anesthetic.  Evidently they could not get me numb with the local so had to resort to a deep general anesthetic.  I went to the OR at 7:45 and didn't wake up until 11:30.  You can bet I'll demand a general anesthetic when it is time for this thing to come out.  I think they are totally repulsive and I hate the thing, although he did do as I ask and put it deep so it hardly sticks out at all.  I've seen some that stick out a half-inch.  I'm red and sore this morning, and I can trace the catheter all the way to my jugular vein with my finger, and it is sore, too. Now I have a question:

I was sent home with an ID card showing I have a power port, a key ring tag advertising the same thing, and a silicone bracelet which also advertises it.  No way I'm wearing that thing.  But I am really concerned that they sent me home with a "Power Loc Safety Infusion Set" in a sterile package!  WHAT AM I SUPPOSED TO DO WITH THAT THING?  I was given no instruction at all!  I was too groggy to know to ask before I left, and I am going to heave if anyone tells me I have to stick a Huber needle into myself! 

My infusion R.N. said to keep the power loc set  in case I ever need to go to another location (I live in hurricane-prone country) for an infusion or if I ever need a particular type of scan and they don't have that equipment.  I'm keeping it.  Since my first infusion, I feel better about having the port, and it did not hurt when she put the needle in.  I had used my scream cream, and she uses a cold spray to numb it also.  I was shocked at how much pressure is required to insert the needle!  It's like a punch in the chest!  I'll be better prepared next time, and it should get easier, I hope, since I am on weekly infusions for 12 weeks.  I'm not so repulsed by the port anymore, although I'm calling it my "starboard" since it is on my right side.  They will also work with my cardiologist and I won't have to have his phlebotomist do my blood draws anymore because the infusion nurse will also do my cardio tests and send them to my cardiologist.  There's a benefit! 

ruthbru

I have never heard of such a thing. Call back and ask. I hated my port too but didn't have to do anything with/to it at all ever.

ElaineTherese

Unwilling Participant,

I wouldn't do anything with the "Power Loc Safety Infusion Set." Just toss it. The nurses who access your port will have plenty of sterile equipment, and they will use that.

I'm sorry that getting the port was such an ordeal for you. It's yet another step in cancer treatment that many women find dehumanizing. My oncologist doesn't do AC chemo without a port.

I know I'm crazy, but I like my port, and I have kept it even though my last Herceptin infusion was a year ago. I just get it flushed once a month when I get my Zoladex shot. I'm happy that my veins are in good shape, and that if I need future infusions (I was diagnosed at Stage IIIA), I will have my port.

ruthbru

I had a love/hate relationship with my port. I hated getting it. I hated having it. BUT, now that it's in the past, I am really, really glad I had one because from now on you will need to get all blood work, shots, blood pressure checks, IVs etc. in your "good" arm. So you really need to protect that arm's integrity and you do not want to risk blowing out those veins by subjecting them to chemo and herceptin treatments. As distasteful as the port is now, I think you will be glad, down the road, that you had one.

Beck39

I too had a traumatic experience having my port put in and I'm getting it out this Friday. I'm very nervous, I will be so glad to have it out though. My port is in my arm so it's been difficult not to bump and looks terrible when I wear short sleeves. I'm hoping the scar won't be too bad

CrawfordsMommy

Well, here I am weeks after port removal... The site is still swollen, probably from having been infected for so long, and it's SORE, and it's UGLY and not healing pretty, again from infection probably. I'm afraid I'm going to have a whopper of a scar.

Next question: Is there any way that one can get scars fixed eventually if they look bad? I'm hopeful that mine will eventually smooth over, but if it doesn't, I can't wear 99% of women's clothing ever again without a scarf to cover up.

UnwillingParticipant

I think you may be right, and I was wrong to be so angry about this.  It is for my benefit, and I am feeling more grateful and a lot less angry now that it is in and I have experienced my first infusion.  I am so happy with the new regimen that my MO put me on that I got over the rest of it pretty well. The low-dose weekly Taxol and thus not needing Neulasta has me jumping for joy!  My bones and joints ache enough with that added stress.  And I won't lose my hair, nor my nails, or have neuropathy or the other unpleasant symptoms of TCHP that was originally planned for me.  I'm a happier patient today! 

UPDATE:  It was all a lie.  I began to feel neuropathy during my 2nd infusion of low-dose Taxol even though I was icing.  My 3rd Taxol dose, and my 2nd Herceptin infusion were canceled because I had to have my gallbladder removed that day.  A week after that, I had an episode of Takotsubo Cardiomyopathy, AKA Stress Cardiomyopathy, AKA Broken Heart Syndrome.  In other words, my left ventricle dilated to the point that it looked just like a heart attack on EKG.  Enzymes rise, troponin rises, so they tell you that you are having a heart attack.  I was immediately rushed into a cardiac cath.  I spent 4 days in the hospital and saw my MO 2 weeks later.  No more attempts at Herceptin for at least 2 more weeks.  PET scan next week.  Oh, and meantime, my hair fell out.  Another lie.  Since August, I have had breast surgery to remove a large tumor, along with a second incision for axillary dissection I had refused, then I had a broken leg (now need a total knee replacement), then treatment starting, then surgery to remove my gallbladder, then a heart attack, and now I intend to just stay in my room, turn off my phone, and make them all go away.  I'm done. I will ask for palliative care, then hospice when needed. 

CrawfordsMommy

Oh wow, low dose chemo! I would have done that, unfortunately I got the strong stuff, which meant hair loss, nail issues (still ongoing), Neulasta and all its side effects, and so on! I was so glad when I finally finished that regimen!

Tinyfrog

I had been told after numerous inquiries that the port placement was nothing, and right now feel as though it was much worse than the prior two surgeries. I was also completely awake, in pain, and crying during the entire thing. They kept saying, "Oh you can feel that?" I feel as though I've been bracing myself ever since the start of the procedure yesterday holding back from crying - my stomach muscles are sore, and I've been wearing my mouth guard all day to have something to bite on for the pain. I'm still extremely nauseous and it's 36 hours afterwards, and for what? The breast surgeon honored the fibromyalgia written in my health file for the first surgery, and I was give propofol then - which was awesome. But when people don't honor it, it's a disaster - especially with dental work. If I feel the same tomorrow I'm going to the ER for pain meds. The port is more like in my shoulder and armpit - does that sound right?

I am starting the so-called chemo light (taxol and herceptin) as well next week - Feb 1. But I've also been told to expect hair loss, neuropathy, nausea - because all of those are associated with the taxol.

MinusTwo

TinyFrog - my breast surgeon put in my port and I was completely sedated. No way can I imaging that places w/o anesthesia. I understand taking it out is easier, but my BS would not do that w/o sedation too. Sorry for your pain.

NotVeryBrave

Hi there -

I was more nervous than I thought about getting the port placed. They ended up having to give me more medications than they expected because I kept moving during the procedure. There's no way I would ever consider having it removed one day in an office or with local anesthesia!

As far as scars - my daughter had a bad bike accident and ended up with a scar on her chin. Using the silicone bandages from "Scar Away" have made a huge difference. It was much better after a couple of weeks and barely noticeable now.

MinusTwo

Just jumping back in to say that I LOVED my power port. It was placed so it didn't slow & nothing rubbed on it. I was HER2+ and I was able to get the extra year of infusions w/o worrying about accessing veins. i as also able to use the port for all testing - CT w/contrast, blood draws, PET, etc. I hated to see it go.

amylsp

Just had my port removed this past Tuesday after having it in for 29 months! It feels so great!!

I had it done at the hospital with conscious sedation, and it all went without a hitch. I had some soreness for a few days and it's still a bit swollen in the area, but otherwise no complications so far. I had my BS use actual stitches this time, as I consistently have issues with dissoluble stitches. So hopefully the iscision will stay closed after she removes the stitches next Friday. That's the only thing I'm currently worried about.

Tinyfrog

I feel like all of my posts on here come out grouchy or bossy because it's like the only place I can be. And then when you very nice ladies, who have been there and done that say such sympathetic things like, "Sorry for your pain," (MinusTwo) and "Sorry to her you had a rotten time" (KB870) - I feel like aw, well maybe it's not so bad because for once I'm actually getting validated, and can move on from this for now. I was able to get by with what I had on hand today, which was just the tylenol - thank goodness, because last night I was sure I was going to have to get some painkillers from somewhere. I think if they just handled the port placement in the same way as the prior two surgeries, it would have been the easiest of the surgeries, but by taking away the full sedation and painkillers, they made it worse than the others. I'm not really sure, who I would speak with to make sure this doesn't happen when it's taken out. The port placement was scheduled by the oncologist, but performed by interventional radiology, for whom I had no contact information. I see my BS next week, so maybe I will speak with her about it. My HER2 results were on the fence for the first 3 tests, and positive for the last - so it was supposedly either an all or nothing thing for treatment. However, we'll have to see how this goes, as I don't know if I'll want/need a full year of herceptin; especially if I have to keep the port in just to get the herceptin every 3 weeks. Has anyone gotten herceptin on an IV?

Yeah, I think "conscious sedation" is a ridiculous paradox. I get something like icy hot - because that is pretty accurate.

I think you can actually get the port placed in the interventional radiology clinic that's in the same building as the oncologist. I'm not sure if it's set up like an operating room. However, under my insurance, I had to get it done in the hospital.

I think I read something in my files that my port is only to be used by the chemo nurses. I don't think they're allowed to use it for blood draws.

I took a shower on Wed - the morning of the surgery (with hibiclens) and haven't showered since. My discharge sheet says "Do not get incision wet for 24 hours. Then shower and bathe as usual, but do not submerge incision in water for 7 days. Keep the area clean and dry. Do not scrub the incision. Gently wash with soap and water," and I was told several times to keep my back to the water in the shower. So, I'm not sure what to do. Should I shower and wash everything else but minimize getting water on the wounds by keep my back to the water? Or should I actually wash the wounds?

Tinyfrog

I've been reading through several old posts and coming across various people commenting on only having one arm for blood draws. And was wondering what that was in reference to. And then I cam across this: "The side that you had the surgery on should never have a blood draw or blood pressure taken." I don't understand, is that true? And why?