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Topic: Port questions

Forum: Chemotherapy - Before, During, and After —

Regimens, side effects, and support from others going through chemo.

Posted on: Oct 28, 2019 07:11AM

Karen2019 wrote:

I am having a chemo port put in next Monday, but have not yet decided exactly when to start my TC treatments. (I am trying to figure out how to work them around travel for Christmas.) I would like to hear everyone's experiences with how long the area hurts after the insertion procedure (hours? days? forever?) and how hard it is to sleep on your side or on your stomach with it. I have just last week been allowed to sleep normally (on my stomach) after my surgery, and I really, really, really hope the port doesn't make sleeping impossible again.

Also, do you get a choice of which side the port goes in? My right side is my cancer side, but my left side is the side I carry my purse on and I honestly am so used to having it on my left side (after 52 years) that I get all discombobulated when I have to carry it on the right!

Diagnosed at 52, right lumpectomy with bilateral oncoplasty, Oncotype score 42 Dx 7/15/2019, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/16/2019 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Reconstruction (left); Reconstruction (right) Chemotherapy 11/20/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Oct 28, 2019 07:41AM Spookiesmom wrote:

My port has been in 7 years. I don’t remember any pain after inserting it. It was placed on the non cancer side then, but ca came back there. I used to carry my purse on left side too. Gave it up when I realized all the useless stuff, rarely used , stuff made my back and shoulders hurt. Just carry a clutch big enough for phone now. No problems sleeping on either side.

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
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Oct 28, 2019 08:37AM MinusTwo wrote:

Karen - there is a recent thread that discusses lots of port questions but I can't find it just now.

I loved my port. Kept it for 5 years for infusions, blood draws, contrast for CTs, etc. I had the port installed one day and they left the "dangles" (connections) so I could start chemo the next day. Or they can seal it off. I don't remember any long term pain - certainly not more than a week. There was never any problem sleeping on my side or my stomach - although I had pretty much transitioned off my stomach by then due to all the other surgeries.

It's normal to put the port on the side that does not have cancer. I too carry my purse on that side & never had any problems after the first week. However like Spookie's Mom, cancer did convince me to ditch big purses. Why was I still carrying all that stuff? Enough to nurse the entire city in case of a nuclear attack!!! I now use just a small/medium cross body bag.

Be sure to draw the outline of your bra strap w/magic marker so it won't go right under that strap and rub. Also talk to your doc about placement that is low enough not to show with scoop necks.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Oct 28, 2019 03:44PM Cowgirl13 wrote:

My experience with getting my port put in was very atypical. I felt like I had been kicked by a horse for a week. My body just over reacted to having this procedure. I think it was in for a week before my first chemo which did hurt, momentarily. But please don't think your experience will be like mine. What I would say is that if you can, err on the side of caution and give yourself a little extra time.

Be the kind of woman that when your feet hit the floor each morning the Devil says: 'Oh crap! She's up! Dx 5/28/2009, IDC, Left, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Surgery 6/16/2009 Chemotherapy 8/3/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/23/2010 Arimidex (anastrozole)
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Oct 28, 2019 04:55PM Karen2019 wrote:

Cowgirl, so sorry for your bad experience! I definitely think I will be cautious and give myself extra time.

Spookiesmom and Minustwo, thank you for the reassurance. And you are right about the purse issue - I have been carrying a much lighter purse since my surgery and have learned that I was carrying around an awful lot of crap all these years for no reason

Diagnosed at 52, right lumpectomy with bilateral oncoplasty, Oncotype score 42 Dx 7/15/2019, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/16/2019 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Reconstruction (left); Reconstruction (right) Chemotherapy 11/20/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Nov 4, 2019 08:02PM - edited Nov 4, 2019 08:08PM by Karen2019

This Post was deleted by Karen2019.
Diagnosed at 52, right lumpectomy with bilateral oncoplasty, Oncotype score 42 Dx 7/15/2019, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/16/2019 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Reconstruction (left); Reconstruction (right) Chemotherapy 11/20/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Nov 5, 2019 12:42AM - edited Nov 5, 2019 12:43AM by Wildplaces

Karen,

This experience relates to Australia but I dont think it will be much different.

It is a 40-60 minutes procedure that can be done under local anaesthesia with light sedation or general anaesthesia. You will be given antibiotics at the time of insertion. Most surgeons will go to your right side because of venous anatomy but sometimes after reviewing your films and your torso they may chose the left.

Mine was painful for about 5 days - but I am very flat upper torso - of average size just no fat on my chest so there was a bit of skin stretching for a pocket to house the port chamber. The chamber is small - lets say 3 by 3 cm approx.

Should be able to sleep on your tummy - just put a pillow on that side for a swimmer's position. It will probably not be comfortable if you want to sleep port side down on your side.

You can get a local anaesthetic cream to pop on your port 30-45 minutes prior to it being accessed so you dont feel that for chemo - its a lignocaine based mix. Here it is called Emla.

Car seat belts and bag on the port side are annoying for a while.

Wishing you well,

🙂🐣

Dx 8/5/2016, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/13 nodes, ER+/PR+, HER2- Surgery 8/11/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic ovary removal Chemotherapy 9/11/2016 AC + T (Taxol) Radiation Therapy 2/21/2017 External: Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole)
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Nov 6, 2019 02:28PM Karen2019 wrote:

My port placement went fine generally, though somehow I hadn't realized that it would actually involve two incisions - one under the collarbone for the port and one in the lower neck for the catheter into the vein. It was implanted on my righ side, where the nurse said they always put it, regardless of your cancer side, due to the venous anatomy. The two incisions are still fairly painful, especially with movement. I have been able to sleep ok, though, thanks to the Percocet they gave me. I am definitely glad my chemo doesn't start for another two weeks, though, so I will have a chance to fully heal defore then

Diagnosed at 52, right lumpectomy with bilateral oncoplasty, Oncotype score 42 Dx 7/15/2019, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/16/2019 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Reconstruction (left); Reconstruction (right) Chemotherapy 11/20/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Nov 6, 2019 10:50PM MinusTwo wrote:

Karen - proving again - all docs are different !!! I had my port on the left side because the cancer was on the right. I also had only one incision more than 2 inches below my collar bone & not much bigger than an inch. After the port was placed, I started chemo the next day. Hope your pain doesn't last too long.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Nov 8, 2019 07:09PM msphil wrote:

hello my port was put on right side surgery on left was just little sore couple days but slept pretty well good luck. msphil idc stage2 0/3 nodes 3mo chemo before and after Lmast then got married was planning wedding at diagnosis. Then 7wks rads and 5yrs on Tamoxifen. Praise God for Inspiration I had Hope Positive thinking this year am 25yr Survivor.

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Nov 10, 2019 07:00PM Bejeweled wrote:

Karen,

I had my port put in (right side) on 10/7. It was a bit sore, kind of radiating back through my right shoulder for about 10 days. The first week or so, sleeping on my right side was uncomfortable, but it did go away. Like some one else said, seatbelts on the passenger side rubbed it in an annoying way for a couple weeks, but that's it. I had my lumpectomy and reconstruction on 10/28, and it was completely healed and comfortable for all sleeping positions well before that surgery. Now of course I am uncomfortable all over again, but not from the port.

Dx 8/27/2019, IDC, Left, 4cm, Stage IIA, Grade 3, 1/3 nodes, ER+/PR-, HER2+ (FISH) Surgery 10/27/2019 Lumpectomy: Left; Reconstruction (left); Reconstruction (right) Chemotherapy 12/3/2019 AC + T (Taxol)
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Nov 10, 2019 08:30PM Karen2019 wrote:

Bejeweled - my port and vein incisions are slowly getting less sore, but just in the past two days have gotten very itchy, along with the area between them where I can feel the catheter under my skin. I think it's primarily a reaction to having the Saran Wrap type bandages on for five days, but it's driving me crazy. I also feel like both of my shoulders are tight and sore since the implantation, which is weird. I'm glad I have a PT appointment on Tuesday so I can have my therapist help with that. I hope your post-surgical pain lessens soon. It's amazing how many types of pain and levels of discomfort this damn disease puts us through at once.

Diagnosed at 52, right lumpectomy with bilateral oncoplasty, Oncotype score 42 Dx 7/15/2019, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/16/2019 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Reconstruction (left); Reconstruction (right) Chemotherapy 11/20/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Nov 10, 2019 09:06PM - edited Nov 10, 2019 09:12PM by Dixie02

Photo not mine. Found on rleepenn's wordpress blog.

I just got mine on Wednesday. The actual port feels fine, the incision is a tiny bit sore still, but not bad at all. The first night I slept on my back. The second night I rolled over in my sleep. I have a spot on my neck, and the catheter tube going down (like in the picture that I found on a blog site) that tube is stitched to the muscle, and that was painful. But, perhaps there's different types of ports because most photos online don't have that. It's fine now, other than a feeling of having a stiff neck, and when I wake up and move out of bed it hurts from being in one position all night. But, it's on the mend, and improves everyday.

I'm the type of person who barely drinks alchohol so recovering from anesthesia probably took me longer than average. It was my first experience with surgery as well. I was done, and home, by 1pm and slept most of the day, and the next. A headache was what bothered me most, and I'm borderline anemic so I think my body just needed the rest.

It's on the opposite side of my tumor, and I wear a crossbody handbag, and that wasn't much of an issue.

I know it's scary, and you've had a lot of information to process already. It helps me to know that I'm finally starting the treatment process. One member said that she considers it her port of entry for thousands of little chemo warriors to rush in and attack. That imagery helped me.

Dx 10/11/2019, IDC, Left, 4cm, Stage IIIC, Grade 3, 1/3 nodes, ER-/PR-, HER2- Chemotherapy 11/10/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)

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