I really do not want a port...

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berries
berries Member Posts: 277

I'm not sure that I've fully accepted that I need a port after reading several others who did not get a port during dd AC/T (8 rounds total, every 2 weeks). I start 10/24 and need to make my port surgery appointment on Monday, but I've not come to terms with it as a "must have" -- I know it will make my life easier in the short-term, but I really do not want another scar and another thing I have to cover up, another surgery to install and then another to remove...

My MO and nurses have all advised me to get one (it makes their lives easier, certainly!), but I would love to hear from those who did NOT get a port during AC/T....

any advice?


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Comments

  • 2019whatayear
    2019whatayear Member Posts: 767
    edited October 2019

    I got a port- Your veins will thank you. It makes the treatments much easier on you. I highly recommend getting the port. really really 5 stars would recommend. LOL That being said- can't wait for the exciting day when they take it out!!!


  • LaurenInPHX
    LaurenInPHX Member Posts: 165
    edited October 2019

    My scar is teeny tiny and completely unnoticeable. Even with a port, my veins are toast. I can’t imagine going through chemo without it. I left it in for a long time and my plastic surgeon removed it during a reconstruction surgery. The placement was done under twilight anesthesia - not a big deal. I know you asked for people who did it without a port so I hope you don’t mind my two cents. :

  • Scrafgal
    Scrafgal Member Posts: 631
    edited October 2019

    yes...your veins will thank you! And my scar was placed so that I can wear most lower cut tops and not have it visible....it is a faint scar....

  • Newfromny
    Newfromny Member Posts: 139
    edited October 2019

    I had TCHP and did not get a port. I have 1 more herceptin/perjeta infusion, but it’s been tough the last few months, since my surgery on 3/13 they can only use 1 arm and my veins are shot, it usually takes a few sticks to find a vein that will work. And going forward I have to worry about blood draws. Looking back I’m not sure what I should have done

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2019

    How accessible are your veins? I didn't plan on getting a port, so I went portless to my first AC appointment on a Friday morning. After several failed attempts by numerous people, we decided it was better to get a port. I was scheduled to get a port early Monday morning and had my first AC infusion in the afternoon. I was awake for the port surgery to avoid more anesthesia. I still have my port and get it flushed every 3 months.

  • hapa
    hapa Member Posts: 920
    edited October 2019

    I got a port and wish I hadn't. I'm small, was having BMX, and needed to keep my port after surgery so it was placed pretty high on my chest and the scar is visible with a LOT of my clothes, and it's not like I dress provocatively or anything. OTOH hunting for a vein every three weeks would probably have increased my anxiety during treatment. I also had a year of herceptin so it would have been a much longer course than yours. Of course had I not gotten one initially and wound up getting one later I probably would have regretted it even more because then my veins would have been shot AND I'd have the scar. I had my reasons for wanting one at the time though, and hindsight is always 20/20.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited October 2019

    Although not absolutely necessary, it will make your life easier! You'll preserve your veins,have painless pokes and, if it's a power port, use it for blood draws and scan injections. My infusion nurses say that since they're trained to use both veins and ports, it's of no significance to them. Ultimately, it's your choice!

    I am also very petite and my port was placed in the little hollow where my shoulder meets my upper chest. It is a petite Bard Power port. The placement makes it virtually invisible and because it’s in a recessed location, nothing rubs against it

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited October 2019

    van, from reading these threads for over 10 years I learned something very important about the important about your veins vs getting a port. It's possible that 'down the road' in your you might possibly have the need for your veins to be healthy and in good shape. You could have a catastrophic illness although that may never happen. I say this not to dissuade you from getting a port but to give you information you might not have. It's one thing to understand all of the risks involved, make. Your choice and go forward with your decision. It's another thing to be in situation where you might need them and feel terrible that you weren't aware of the risk

  • ksusan
    ksusan Member Posts: 4,505
    edited October 2019

    Adriamycin is serious chemo. I have a friend who refused a port and whose arm function is now permanently impaired from perfusion. In retrospect, she would have preferred the scar.

    You might want to ask if a PICC line is an option.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited October 2019

    I loved my port. Kept it for 2 years after active tx and used for blood draws, contrasts for CT & MRI testing, etc. Make sure you ask for a 'power port' so it can be used for all of those things. I was especially glad since I ended up with lymphadema and didn't have to fight about no sticks & pricks in my arms.

    I had a double mastectomy and my port was far enough to the side & down from my collar bone that it never showed with any clothes - even deep V necks or boat necks. In fact I just measured - 2-1/2" down from the lowest collar bone point and 3" in from the center of my body.

    I took the advice of someone on this site and drew magic marker lines where my bra straps sat. That way I totally avoided ongoing uncomfortable rubbing.

    Edited to add - it's a VERY short surgery & a VERY small scar. Ask them to leave the "dangle" access during installation. I had my first chemo the next day & was all ready w/on any hassle.

  • CBK
    CBK Member Posts: 611
    edited October 2019

    VMB

    I didn't get a port with 4AC 12 Taxol. I did all infusions on one arm. I had an amazing infusion room nurse who I only let touch me. She was super experienced and never missed a vein.

    In retrospect I could have used both arms since I didn't have a axillary node dissection on one side but some antiquated hospital policy didn't allow me to use both arms.

    My nurse was very detailed on wrapping my arm or hand post infusion with ample compression and I did so at home in between infusions to keep bruising minimal.Be prepared they will move around where they insert needle for infusion a lot, so sometimes needle was inserted in hand! 🤢 I know !!

    I had a lot of scar tissue pile up in the forearm PFC that was causing a tightness in the area. When i told my physical therapist he manually manipulated the area and it seemed to release almost instantly.

    I understand you not wanting a port. I was vehemently opposed to it! I was undergoing breast reconstruction at the same time and I had so many complications I didn't want anything else causing me a problem!

    Good luck in making the right choice for you!

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited October 2019

    My port has been in 7 years. I had a/c, taxotere. It was used in April for surgery, IV, , blood draws. I hate getting stuck, couldn’t imagine someone poking around my arm to start infusion. It’s not that big a deal, you don’t have to keep it forever like me, will make your chemo time a whole lot easier

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited October 2019

    Many good points! I forgot to add that I became very ill in early July and had to go to the ER. I was severely dehydrated, very low sodium and a few other things. My port was accessed quickly and everything went in through the port, even though none of my problems were bc related. Mine has been in for 8 years. Not currently using it for tx but since i’m Stage IV, I’m keeping it!

  • DogMomRunner
    DogMomRunner Member Posts: 616
    edited October 2019

    I have a love/hate relationship with my port. It's right where my bra strap goes and the strap can rub it. Luckily my sister made me some pads that I can attach to the strap to help. I also have to be careful of wearing heavy handbags on that shoulder. When I was having chemo each week, the needle sticks didn't hurt at all. Now that it's only every 3 weeks, my skin over the port seems more sensitive.

    There wasn't a whole lot of discussion about getting the port when I was diagnosed. Since I am HER-2 positive I will have infusions for a year. I would still rather have the thing than not. We'll see how I feel in about 8 months

  • Racy
    Racy Member Posts: 2,651
    edited October 2019

    I understand you not wanting a port: just one more reminder of cancer. My oncologist didn't say it was necessary.

    I had six cycles of TAC chemo in 2011 without a port. I got used to needles during cancer and they don't worry me now.

    I have all needles in my right arm. Vein can normally be found by constricting the arm or applying a warm towel if necessary.

  • Alicethecat2
    Alicethecat2 Member Posts: 105
    edited October 2019

    Hello VMB

    I didn't want a port either and got a PICC line on the inside of my arm instead.

    Pros: tiny scar on the inside of my arm. Cons: had to be flushed once a week by a nurse. Overall: worth it to avoid a scar on my chest!

    Worth asking your chemo team about this?

    Alice

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2019

    Hi, I was on Taxol not AC&T but...I was on weekly Taxol, Herceptin and Perjeta for six months, now continue with H&P "indefinitely" since I am Stage IV. I never had a port and do not want one.

    Two years of IV infusions, first weekly, then every three weeks and my veins are still going strong. My veins are small but we always manage. I haven't had breast surgery so I have both arms as an option. Sometimes the nurse goes to my wrist or hand but like I said, we manage. My MO supports this.

  • Runrcrb
    Runrcrb Member Posts: 577
    edited October 2019

    imageMy port was placed 9/27/16 and removed in February 2017. This photo was just taken and I cannot find the scar. Having the power port made chemo easier.

  • WC3
    WC3 Member Posts: 1,540
    edited October 2019

    I have one vein and have had three ports. I never had chemotherapy through my vein but I did have targeted therapy through it when I was between ports and it was painful because the fluid was cold.

    If I needed chemotherapy again I would want another port.

  • moth
    moth Member Posts: 4,800
    edited October 2019

    I did not have a port. Actually, I didn't see anyone with a port sitting in any of the chairs in the chemo room through 4 AC + 12 T. We all had IVs. It was fine. I've had blood draws on that arm and haven't had any problems.


  • ksusan
    ksusan Member Posts: 4,505
    edited October 2019

    I do have a port scar--there's a range of skin responses.

  • pingpong1953
    pingpong1953 Member Posts: 362
    edited October 2019

    I had a PICC line. Like Alice said, it has to be flushed once a week and you have to keep it covered, but it's easy in, very easy out and it left no mark on my arm. I wouldn't have chemo directly into a vein. Many years ago my ex (now late) brother-in-law had chemo for lymphoma and his veins got so bad there were times his chemo had to be cancelled because they couldn't access a vein. It's nasty stuff. My chemo only lasted 4 months, so if I had a longer stretch in the future I may opt for a port, but I liked my PICC line just fine.

  • berries
    berries Member Posts: 277
    edited October 2019

    Thanks everyone! I think you have all convinced me to get one.

    I'm looking into getting an upper arm port OR a PICC line and have an appointment scheduled for the surgery this week. OY! The appointments never stop...

    Thanks again for all the replies -- good luck to you all xo

  • LisaEllen
    LisaEllen Member Posts: 22
    edited October 2019

    feel free to message me if you want a picture of my scar. I still rock tank tops and never give it a moments notice. Taking it out was a quick procedure in the doctors office.

    But like you, I loathed the thought of getting one. My physician husband talked me into it. I was eventually glad because I felt poorly during chemo and the port was very quick to use- no arm compression, no slapping veins, or moving the needle to find a good vein.

    One negative, however, is they flush the port before every use. Because my was high on my clavicle, near my neck, I could taste the flush. It tasted like I had twenty dirty nickels in my mouth mixed with rubbing alcohol. Disgusting!

    To this day, I have a little trouble getting an IV because of scar tissue from past IVs (many surgeries). Less IVs can be a good thing.

    I did hate the port, but I hated lots of things that year :/

    best of luck and sending hugs!!!!

    Lisaellen

  • Ingerp
    Ingerp Member Posts: 2,624
    edited October 2019

    I didn't get a port and did fine with the IV infusions. That was my preference going in but it's also what my MO prefers--that patients at least try it without a port. If necessary, you can have the surgery later.

  • berries
    berries Member Posts: 277
    edited October 2019

    So I ended up with a chest port yesterday!

    They said they would not do an arm port and very rarely do them as they're more complicated and less reliable :(

    Oh well.... I see why its needed.

  • deweygirl19
    deweygirl19 Member Posts: 38
    edited October 2019

    I’m sorry you had to get the port, but based on what the other ladies said it sounds very practical. If I have to have chemo I’m not crazy about getting port either.

  • Simbobby
    Simbobby Member Posts: 140
    edited October 2019

    I had a port throughout my chemotherapy. Made things really easy.

    Then I had my bi lateral mastectomy with 24 nodes removed. My right arm is off limits now for bp and IVs.

    Once I completed my Herceptin treatments the Onc approved removal of the port.

    THEN - I had a colonoscopy and the Dr. perforated my colon. 8 days in the hospital with no food or drink - only IVs. By the end of my stay all the veins in my good arm were shot and IVs had to be placed by an IV team with a sonogram.

    THEN- I was diagnosed with Osteoporosis and needed Prolia infusions every six months. But the chemo center doesn’t have an Iv team. They have to use a heating pad to bring out my veins and even then I have to have multiple nurses until they can successfully place it. It’s horrible.

    So long story short, I’ve had it both ways. I wish I had never had the port removed. If I need more than the six month infusions going forward, my Onc said they will have to put the port back in. If your veins become difficult to access, it is not fun

  • Newfromny
    Newfromny Member Posts: 139
    edited October 2019

    Simbobby I also didn’t get a port and I’m not sure about my decision because it is difficult accessing my veins now, tomorrow is my last herceptin. Like you I need Prolia but I got a shot not an infusion, my arm hurt after the shot for a while but not sure why you are getting an infusion

  • umakemehappy
    umakemehappy Member Posts: 42
    edited October 2019

    I didn’t get a port for the same reasons you don’t want to. I made it thru 12 Taxols and then 13 (I think it was 13!) more herceptins. Was fine for me!

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