To port, or not to port?

Luck2U · 10-03-2005, 12:01 PM

My wife has a 6cm tumor, is er+, her2+ "maybe" (they are retesting using FISH since her tumor is grade 1, yet is her2+, which makes the pathologist suspicious as to the efficacy of the IHC test). The onc is recommending chemo to shrink the tumor. Reading the forum posts, it sounds like ports are problematic for some. My question is, are most of you with ports ok with them, and if not is going the vein route even less desirable? Also, I'm wondering if they dont do any surgery now, how do they know whether for sure whether or not the nodes are involved? She had a PET scan, which did not show any node involvement, but I guess the gold standard is through the eyes of a competent pathologist.; just wondering. Any and all feedback, as always, is very much appreciated. Thank you

BubblesMom · 10-03-2005, 04:07 PM

It's really a crapshoot. I've known plenty of women who managed rather well without a port and I hoped that I would be in that group. Unfortunately, it didn't work out that way. By the time I was approaching my 4th treatment, my nurse was having a terrible time trying to find any veins...very uncomfortable experience. The A/C hardened my veins like you wouldn't believe. I would've put in my own port before that 4th treatment (smile). I have nothing but good things to say about my port experience. My veins are just starting to "soften up"...and that's 3 months after my last chemo treatment.

I wish you and your wife luck during this harrowing adventure. You are in the right place...lots of great info, support and invaluable experiences.

Lolly · 10-03-2005, 04:58 PM

Hi, I one who's had a few problems with my port(s), but I wouldn't go back to using my veins for all the tea in China! They really took a hit from chemos, and I want to save them for emergencies.

The problems with my port had to due with the vein that's accessed for the port catheter. It travels between the clavicle and shoulder juncture, and can be "pinched off" when there's movement. Apparently, I have a narrow juncture and the vein tended to pinch off when the nurses would try to infuse or draw blood. My surgeon has finally solved the problem by bypassing the clavicle juncture and using a vein in the shoulder, which is somewhat smaller than the preferred vein, but has caused no problems whatsoever. It's worked beautifully every time, and I've had it now for a year and a half.

As far as your question on whether or not you can know for sure if the lymph nodes were positive if your wife has chemo first, that I do not know. Good question though. What does the onc say?

<3,
Lolly

Luck2U · 10-03-2005, 06:04 PM

Lolly, thank you for the feedback. My wife has decided the port is the best way to go, especially since they confirmed today through the FISH test she is HER/2 +, and therefore will be receiving Herceptin for 1 yr. Given the apparent size of her tumor (6cm), both the onc and the surgeon think 8 treatments upfront will most likely shrink the tumor, and in 20% of the cases the tumor dissapears. If the surgery is then needed, she should get a better cosmetic result, assuming of course, there has been some reduction in the tumor size. I didn't think to ask if after the 8 treatments (the extra 4, per the onc, are becuase they dont know the node involvement without surgery, so they assume the worst and give the same treatment as if the nodes were involved) and surgery, they find the nodes are involved, what happens then? Different kettle of fish, I suspect.

Luck2U · 10-03-2005, 06:07 PM

Bubbles Mom, thank you for the encouragement. She has decided to go with the port. The best to you and yours.

al from Canada · 10-03-2005, 08:47 PM

Port + neo-adjuvant chemo is the way to go on large tumors. The tumor down-sizing will most likely put your wife in the position of opting for a lumpectomy, which has the same survival rate in this case as a mastecomy. The port will give her added convenience for infusions. My wife puts a lidocaine gel on the port 1 hour before infusion; this makes the process painless.

Good luck,
Al

Luck2U · 10-04-2005, 08:40 AM

Thank you Al, I'll tell my wife about the jell angle.

jjfromcanada · 10-04-2005, 08:48 AM

I love my port. The skin covering it is a bit tender the day or so following use, but after having my veins trashed, I wouldn't trade it for the world. Remember she will only have one arm to use for chemo and blood collection. I walk and jog a bit so I cover it with a bandage to protect it from my bra strap abraiding the skin.

sonyamagee · 10-04-2005, 10:28 AM

the nurses spray my port sight with a numbing spray before they start my chemo. i would have your wife ask about this. i feel nothing when they begin the chemo. the lidocaine sounds good too but she should know all of the options.

10-04-2005, 01:10 PM

My veins are hard to tap into. The port is the only way to go, in my opinion. Accessing it is easy; only feel a slight "prick." Much less of a sensation than a shot. Good luck to you.
Barbara2

Gina · 10-06-2005, 10:46 AM

...if you are only using herceptin...a port would not be necessary as I have taken herceptin for years on a more or less regular basis and had no vein problems at all, but if more toxic chemos are to be used...it can RUIN your veins and though I don't recommend ports, having a temporary one put in in your wife's case might not be such a bad idea.

Watch out for the STAPH infections though, and whatever you do, try not to let it get all clogged up. If they don't put her on cumudun for the anti-clotting, she could try taking about 500mg of Evening Primrose a day to keep the platelets from getting sticky...plus the Evening Primrose has some oleic acid which many of us here with her-2 like to include with olive oil in our regimens...fyi.

Tough call wish you the best, Gina

Luck2U · 10-06-2005, 10:59 AM

Thank you Gina; I have logged in your advice. Her port is "installed" today

renate gallagher · 09-17-2007, 05:34 AM

bubbles mom,i know the posts above are very old, but maybe you can help me as i am new to the site, i have just finshed with chemo 4 weeks ago and have gone through physios to assist with the hard veins.the veins are so hard that i can not bend my hand at the wrist nor can i straighten my elbow as there are about 3 veins that are so tight, i massage them daily and go to physio for massage and infra red, is there anything else i can do to help the process along as i need my wrist as i make jewellery?

fauxgypsy · 09-17-2007, 06:11 AM

Renate, have you had a mastectomy or any surgery to your lymph nodesl? Even if you haven't, please see my post under "Help-axillary web syndrome'. It sounds a lot like you are describing. From what I've read it can happen under other circumstance as well.

Leslie

sarah · 09-17-2007, 08:17 AM

no problems with my port after 3 years - definitely easier for me than veins -mine are too small and when I had weekly blood tests that was problematic.
good luck
sarah

hutchibk · 09-17-2007, 10:42 AM

I have had two ports over the last three years and both have worked perfectly, no problems. It will depend on what chemo she is getting... some are too harsh to administer through the skin and straight into the vein. I err on the side of ports, personally. If she will be having weekly infusion, 'no port' could mean she could get scar tissue around the regularly used vein making it harder to access and she will possibly end up with soreness and some bruising.

renate gallagher · 09-17-2007, 11:05 PM

thanks fauxgypsy i read your entry under the web syndrome and also the others, it sounds very much like what i have, the only problem is it is on the opposite arm of where surgery was.I had two lumpectomies on the left breast in april and had 3xchemo arimadex using the veins in right arm after about 10 jabs to find find veins every session,i was told about a port and had one fitted.i have asked every medical person i could find,4 oncs,plastic surgeon,various gp's and they all just offer sympathy but no solutions.i went to a lymphodema sister who has massaged it a number of times and shown me how to massage it,i have also been for a number of visits to the physio nothing seems to help.A number of you speak about excercise that helped what are these?

dbronson1 · 09-18-2007, 02:35 PM

Hi,

This is my first post. I think it depends on the kind of port. I have had my port since Dec. 21, 2006, and have had NO problems at all with it. It is a Bard brand port with metal inner and outer access. My brother in law had a total plastic port and had to have it replaced 3 times. Good luck to your wife. I also had a 6 cm tumor HER2 +, with right axillary lymph node involvement. After having all my chemo up front, I had to only have a lumpectomy (tumor shrunk to undetectable) and a lymph node dissection. My pathology report came back Cancer free. I am now on Herceptin until next April. Praise God. I am having some problems with the Herceptin, just started to have allergic reactions, so that is why I joined this site.
If your wife's PET scan showed no lymph node involvement, then I would not worry about it. Did she have a breast MRI? That also would show it.