Everything you wanted to know about Chemo Ports

I was lying on a surgery stretcher today.  The doctor was standing over me ready to make the incision to remove my port.  All of a sudden I realized I had never written about port placement!  And since I was now getting it removed 10 months after having it implanted, I can write about both simultaneously!

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please check out my online store www.hellocourage.com  where I sell products for cancer patients like this seat belt pillow that will protect your port.   It is very handy and easy to use.  I still use mine even though my port is long gone.  Click on picture for details.

BreastBuddy1I also now sell chemo caps that are cute, cool, stylish and comfortable.  I started Hello Courage to help pay for my medical expenses and to donate chemo caps to women who have no means to purchase them:

CH-h4flappergraysweatshirt1

 

 

A port differs from a PICC line as a port is surgically implanted into your body and has a tube or catheter that is connected to an artery or major vein.  It can stay in for several years if need be.  A port saves your veins and becomes your good friend during Chemotherapy and with the countless blood tests that go with it!  You may wonder if it is worth everything you have to go through to have a port.  My answer would be, yes, as it does save your veins!

Port Placement

The port is surgically implanted – can be right or left side of chest depending upon if you had a Mastectomy or not or what your Oncologist orders.  It looks like this:

When I had my port put in, I didn’t realize it was such a big deal.  It is an outpatient surgical procedure with an operating room, surgery, and recovery room.  I don’t know what I was expecting, but not that much fanfare!  The actual procedure took about an hour.  The surgical team gives you twilight sleep, but it didn’t do anything for me.  I was wide awake and remembered the entire procedure.  They asked if I wanted more so I would fall asleep.  I did not.  I hate that drugged up feeling, but everyone is different!

The surgeon numbs the area with  Lanacane, a novocaine-type drug, makes an incision, the tube is connected to the artery or vein, and then the port itself is sutured into your body.  Then the area is stitched closed, and they take you to recovery.  I was not able to drive home and was warned ahead of time to bring a driver.  I also had to take it easy for 3 days with no lifting, stooping, or using my upper body.

Before you have your port placed, it is a great idea to ask the surgeon where it is going to be placed.  If they can avoid your bra straps, this will help enormously in the future as many women complain greatly about this.

My surgical area hurt like crazy for 2 weeks.  Many people have no pain at all.   My theory that mine hurt so much was because I had a heavy breast on that side and wasn’t able to wear a tighter bra because I had a Mastectomy just 3 weeks before the port placement.  So my breast pulled on the incision.   I took Motrin, but it really didn’t cut the pain that much.  The majority of people do not have the kind of pain that I did.

The other thing I wasn’t prepared for is how the port disrupts your sleep.  I was not able to sleep on the side with the port for over 6 months!  Since I had a mastectomy on the other side, it was sleeping on my back or nothing!   Then one day, all of a sudden, all discomfort left, and I was able to sleep on that side.

During Chemo, my port worked most of the time.   On 4 occasions, the port got clogged up.  So the Chemo Nurses would have me do all kinds of acrobatics to get it to unclog.  They were always successful with almost standing on your head (wig fell off once!), lying back in a chair, or putting your hands over your head and coughing!  It always worked.  They do have drugs they can insert into the port to unclog if necessary.  Thankfully, I did not need that done.

Your Oncologist will let you know when the port can be removed.  In the interim, if it is not being tapped for chemo or blood tests, you must have a port flush at least once per month at your local blood draw lab or Oncologist’s office.

I have gotten letters from people who have had their ports in for as long as 10 years!  They were afraid to take them out or afraid of recurrence.  Those are legitimate fears, but trust me, taking it out as quickly as your Oncologist recommends is the best advice I can give.

Port Removal

Port removal is not as traumatic as port insertion.  For one thing, you are so happy to have it out!  First, blood tests are done to check your platelets and clotting factor.  Mine were normal, so they were able to proceed.  They have to make sure your blood will clot and that you don’t keep bleeding out of the artery.  Good idea, huh?

At my medical facility,  the removal was done in a surgical room, but not a full-blown operating room.  Two assistants prepped me and my chest area.  They did not offer me any drugs or twilight sleep.   My surgeon told me that everyone gets really tough during Chemotherapy, so drugs usually aren’t necessary.  He was serious and spoke truth!

The surgeon numbed the area with Lanacane.  First he made an incision then surgically removed the catheter from the artery.  He had to put pressure on that area for about 5 to 7 minutes to make sure the bleeding stopped.  Then he removed the port by cutting the sutures that held it in place.  Again, he put pressure on the area for several minutes.  Once the port was out, he made an inside row of dissolving stitches and an outside row of dissolving stitches.

The procedure itself took about 30 minutes.   I was given instructions to take it easy for 3 days, again not stooping, lifting, or exerting my upper body.  The Lanacane is wearing off as I write this, and it is starting to hurt a little.  This pain will be fine with Motrin!  I can tell that already!

There you have it.  Everything you wanted to know about your Chemo Port!  I hope the information is helpful!

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46 thoughts on “Everything you wanted to know about Chemo Ports

  1. Hi Denise. That is true. My port has saved my sanity. My experience was the same as yours with insertion. I felt like Frankenstein for about a week and every time I turned my head, I could feel it. After that first week was up, I felt fine and have been fortunate to not have any additional problems over the past 5 month. It feels like a part of me now. Not sure if that’s good or bad. LOL! I can sleep on both sides and even my stomach. The only real problem I had was the fact that my port is on my left side and my seat belt went right over it. I had to find a seat belt cushion to go over it but once I did, problem solved. Thanks for the info on the removal. I was concerned about that. I remember asking one of the chemo nurses if they were going to have to dig it out!! I’m not sure how long I’ll have mine because I did neoadjuvant chemo and I’ll have my surgery next month but it has been great because I know my veins would be shot otherwise!

    • Thanks, Shela, for this additional advice about your positive experiences and
      helping others about the seat belt issue! We do become tough, don’t we? LOL!
      And removal – don’t be alarmed. It popped right out. I had to take some Motrin
      on day one, but it feels much better today! Just have to be careful for a few
      days and not do too much exertion! Thanks, again! Denise

  2. I can use only one arm/side for needles because of the fear of lymphema on the other. I’m glad I have my port, but I must say that it remains (after 4 months) very tender. There’s a local anesthetic called Emla (can get the generic form, needs script, dirt cheap) that works wonderfully on me. I apply it about a hour before infusion, and it deadens the port area.

  3. I had my port inserted 5 days ago and it was more discomfort than I had counted on. It is much better today. I had been forced to sleep on my back until I discovered a trick. If you hold a small pillow (I have a squishy travel pillow which is like a normal pillow but smaller) right up against you, cuddle it and push it a bit under you, you can sleep in comfort. It works so well for me. I hope it will work for others as well. My first chemo is in 3 days.

  4. Carol talked about a small pillow. Maybe you could write about a heart-shaped pillow. I don’t know exactly what it is called. My brother was given 2 when I had my double mastectomy (33 y/o). It was made by a breast cancer survivor. It was so wonderful since I have had expanders for 7 months (silicone implants here I come 4/25…SO EXCITED) I still use the pillows. I love your blog and tell everyone!! Thank you for your help :)

  5. I can truthfully say that my port was the most uncomfortable part of my whole chemo treatment. The site remained black and blue and very tender for the entire time of chemo. The Emla did help during the infusions. I lost about 20 lbs. during my treatment, and the port started to migrate to the surface of my skin after awhile and was almost sticking out by the time it was removed. Even the oncologist no longer wanted to use it because of the way it looked and the surgeon said it looked “nasty”. I never had any trouble with clogging or infection. Removal Day was the best day of my life! I am continuing with infusions of Herceptin every 3 weeks through the veins with no problems at all. (I’m told that Herceptin doesn’t break down the veins like A/C and Taxol do, because it is not, strictly speaking, a chemotherapy drug but is a targeted therapy.) Bottom line: If you’re having trouble with your port, stick it out as long as possible, and just know that there is light at the end of the tunnel.

    • Sally, thanks so much for sharing this information because it is rather unusual
      to have so much trouble with a port. You give advice and help to others who may
      experience a similar situation. Thank you and I’m glad your port is out! Denise

    • If memory serves me correctly, it seems mine was about $1,200 – however, I have coverage.
      But my insurance company did not pay all of that, only partial which hospital accepted.
      I would definitely shop around, but it is probably tough to get a “quote”!!

    • My port was in my arm, right above the bend but yet on the inside part of my arm. The cost was $600, which my insurance paid for $475 of it and the clinic wrote off the $125 excess cost.

  6. Hello, I just came across your website while doing a search for chemo ports. I just had mines inserted 4 days ago, I was diagnosed with Breast Cancer on May 3. It feels very weird like someone mention. Finding a comfortable position has been the worst, I’ve tried my bed pillows but that’s only temporary comfort. I do have a travel pillow at home I will try that tonite. I’m also discomfort raising my arms, but presume this is normal,did anyone else have this issue after their chemo port placement. I have a question did anyone have tingling sensations around their port area. Its not all the time but I do get it. It feels like when your fingers or toes go to sleep.

    Like you I created a blog but more so just to clear my head of all things I was thinking and going through during this journey thus far.

  7. Thank you for your informative blog. A friend whom I have known more than 30 years just had her second chemo treatment for breast cancer. Reading your words provides solace–she will get through this!

  8. Thank you, this was really helpful. I had a picc line during my chemotherapy, so had no idea of what it took to receive a port. However, the idea of saving my veins is very appealing. Three years post treatment and my one good vein has begun to shut down. If the need arises, I think I’d go for a port. It’s good to swim and take showers without picc worry :) ~Catherine

  9. Hello Denise, my mother had her chemo port removed today. The area has been stitched up and she is feeling OK barring the pain. She feels like there is a sharp needle in there. The area is not staining. But it looks red and tender. Is this normal?

    Again, I want to thank you for the detailed description of the port removal and also approx cost. Best,

    • Hi – I had discomfort and pain..mine looked red and tender. If it starts seeping
      or the pain keeps up tomorrow, I would call the doctor! So glad she got it out!

      Please tell your mom that “phantom port pain” is common after it heals. I still have
      random pain sometimes 10 months after the port is gone. I forget it is gone and the
      area hurts. Actually, it is common! Tell your mom I said congratulations on being
      done with Chemo! My best, Denise

  10. I am so relieved to find that so many people have pain and discomfort from the port insertion. I swear, the nurses and my oncologist are acting like I am the only one who has ever complained of this. Mine was installed on Tuesday, and on Saturday I am still sore, with a large bruise and in pain. And then, I wanted to put on a sports bra today and it was impossibly uncomfortable. What kind of bra can you wear with the port installed right where a bra strap goes?

    • Cindy – I had trouble with bras for awhile when I was in so much pain, like you. I ended up wearing
      the bra I wore during Mastectomy surgery – it was like a big stretchy elastic thing with no straps and
      hooked in front with velcro.
      As I said, the port insertion hurt more than my Mastectomy which is ridiculous to me! No one paid any attention to my complaints about the pain. It will get better, but it is tough while you are enduring it!
      Denise

    • I wrote about this on April 7th…see above. I learned to enjoy life without a bra and continue to be the same today. After this much time, I still have a very noticeable bruise where the port was, and I’m beginning to think it will be with my all my days. There is no more swelling and no pain, but I honestly don’t know what I’d do if they every wanted to insert another port. God forbid!

      • Sally, If you should ever have to get another port, you should ask for it to be put in your arm instead of the chest. That’s where mine was and sure, it did hurt for a couple of days after insertion, but after the couple of days, it was feeling back to normal. (But oh, was I relieved to have it removed just because I knew my chemo was over!)

  11. Thanks for replies, everyone. I found a couple of bras with wide-set straps that work (until they begin to dig in the arm pits). I had my first chemo treatment on 9/18. With Lidocaine cream, the pressure on the port hurt when the nurse first connected the IV, but then it worked, pain free. The area is still very tender, and the “bump” is very noticeable and ugly. Denise, is there a scar where the incision was made?

    • Cindy, oh glad you were able to find some bras that “kinda work”. That tenderness will
      subside. By the middle part of chemo, I was so toughened up I couldn’t even feel the
      blood tests or IV inserts. I have a slight scar that is not very visible. I hardly notice
      it unless I go looking for it. It has gotten better with time.
      Keep up the good work, Cindy! YOU WILL GET THROUGH THIS! Denise

  12. Thank you so much Denise for putting this up. I’m gonna have my port removed in December some time and I wasnt sure what to expect. I know now Thanks again :)

    • Tia, so glad I could help you! It is a happy time to get that port
      removed, but for me, I was quite anxious not knowing what to expect!
      I am thankful I could help relieve your anxiety! Removal was quite
      easy! Thank God! Congratulations on getting it removed in December! Denise

  13. hi..I’m Shikha from India..My mother suffered from uterine cancer..she got a chemoport placed on the left side of the chest..but after 3 chemos her port was blocked coz of some mistake by the hospital people..the doctors had immediately asked her to remove it..but she hasn’t got it removed yet…can there be any complications or is it harmful if it is not removed?? please help and suggest..

    • Hi Shikha – I am so sorry your mom is going through this. It is not uncommon for chemo ports
      to be blocked. My suggestion would be to follow the doctor’s advice and get it removed if there
      was some error made. Perhaps it can be corrected and a new port installed. You do not want
      any infection to set in. Denise

  14. Has anyone had swelling along with the pain after the port was inserted. Mine was inserted on Thursday. This is Monday evening and pain mostly is gone but I do have a large size lump which extends below where the port is? I am wondering if there is a problem. I am to start chemo on Wed. morning.

    • Sharon, you should definitely call the doctor who performed the port insertion or your Oncologist.
      Large lumps are not normal. It should be checked right away! Hopefully, it is just fine. It is
      so scary before starting chemo. Thinking of you! Denise

    • Nice to hear from someone who loved their port! LOL! I appreciated mine,
      but was happy to see it go. I had some phantom pains for quite some time
      after it was gone! I never miss it though! Good luck!!

  15. Today is my day for removing my port. 18 months this has been part of me.I wish they would put me to sleep because this is something that i just don’t want to do.I thought I would be happy to get this done it’s the last step of this journey.

    • Hi Mary, I PROMISE it will be better than you think it will be.
      It is a very emotional time because you and your port have been
      through so much. It is a welcome occurrence, but frightening
      at the same time. Thoughts and prayers are with you.

  16. Having my chest port out next week after two rounds of chemo beginning in August of 2012 and then 12 months of Herceptin. I have (HAD?) HER2+ breast cancer. Had a double mastectomy, chemo, daily radiation and then Herceptin, which I completed four months ago. When my doctor said let’s remove the port, I was reluctant. She said she thought I was being superstitious .. afraid that if I removed the port, I would need the port. She said I could leave it, but suggested I celebrate being a survivor by removing it. So, Tuesday it is coming out. I am nervous about the procedure and reoccurance but full steam ahead. Like others, I find myself crying at the drop of the hat now when I was the tough one for everyone for the last two years….

    • Hi Phyllis – we are all superstitious when it comes to removing ports! You are not alone!
      But you will be thrilled to have it out. Mine has been gone 18 months and once in awhile
      I still have phantom pain from it! Crazy! You have been through so much. Trust me – the
      port removal is a breeze! You just feel afraid because of all you have been through.
      It is such an emotional time at the end…IT GETS BETTER – I PROMISE! I am celebrating your
      port removal with you! CONGRATULATIONS! My best, Denise

  17. I had port put in week and one half ago. Extremely sore and bruised. Can feel catheter across my neck; feels like strangling. Port was accessed for first time 2 days ago. After being untethered from port/pump yesterday, found blood all over shirt 6 hours later. Is this the norm??

  18. Thanks Denise. That was my feeling but husband thought it was probably fine. Will do with doctor follow-up. So hard to know what things are the norm when you have so much coming at you at once. Most appreciative of your help! :)

  19. Maybe this is a crazy question, but I am half-way through chemo, and have a port. I am thankful as my veins are awful for a simple blood draw but boy do I hate this thing. I cannot bear to look at it. I had all the initial discomfort and thought it was just me. I had my port placed one day and started AC chemo the next. Needless to say that was not a fun weekend. Anyway I am doing chemo before my mastectomy, so is there any way they can take it out when I have my surgery. I mean they will be in there already. I am having a double mastectomy so any ideas? It would save me an additional procedure and boy would I like to wake up minus this thing after surgery.

    • Hi Jennifer – not a crazy question at all. It is common if you are having
      surgery after chemo to have the port removed then! One stop shopping so to speak.
      Just insist upon it if they want you to keep it. Most Oncologists are eager to
      have you remove them! OUCH on the port one day and AC chemo the next! That happens
      quite often but it must hurt like crazy! Good luck and YOU WILL MAKE IT THROUGH!
      It is a long and grueling road, but you can and will do it! Denise

      • Hi Jennifer, I’m with you, I absolutely hated that port. It sat right where tank or shirt straps sit, and was down right ugly. The only good thing about it was that all blood tests could be drawn through it, and obviously the chemo delivered. I had one nurse during chemo who gave me a shot of lidocaine just before stabbing the IV needle into it, I still thank her for that. I had it removed by my plastic surgeon when I had the tissue expanders replaced by implants and the scar has faded pretty nicely. (It’s been almost 2 months). I wish you the very best, like Denise said, you can do it!

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