Hi everyone. I’ve appreciated reading everyone else’s posts and hearing about the individual journeys we have all been on with MBC. I was orig diagnosed with stage II in dec 2013 (at the age of 44)and had 2 surgeries including a mastectomy, 8 courses of dose dense chemo, and 5 1/2 weeks radiation all in 2014. My reconstruction was delayed and I had a diep flap in January 2016. In April 2016 I was diagnosed with Stage IV after an unplanned but very much needed spinal fusion surgery. My Mets was in my spine and in my pelvis. I’ve not been as fortunate as others as I was on Letrozal and Ibrance for under a year before scans showed progression in my bone. Then I was on Faslodex and a clinical trial testing out Ribociclib. Also progressed in under a year this time with spots on my liver and in my lungs. Then put on Xeloda. After my first scans the soft tissue spots were gone and things were looking good, but a month later they found spots on my liver. So now I’m on IV chemo, Doxil, every 3 weeks. With the initial chemo in 2014, the surgeries in 2016, the regular blood draws and scans with contrast my veins in my left arm are becoming more difficult to use. Can’t use right due to lymph node removal. It took 8 sticks to get blood and get my chemo today (2nd cycle)The medical team talked about a port as a good option. I’ve always struggled with the idea of having a foreign body in my body(though I do have a lot of metal in my back!). I guess the other issue is that I perceive this as being sicker if that makes sense? That I no longer have veins that can handle the treatment? What experiences have others had with ports? Am I too in my head or carrying wrong perceptions?
Thank you,
Harriet
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harriet91
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Your situation sounds just like mine. I’m Stage 4 that has spread to my liver. Initially when Stage 3 I had a port for two years. It worked well, then last July became infected. I had it removed, then the cancer came back. Now doing chemo three weeks out of the month. Could not use my right arm either because of lymphedema. The veins in my left arm completely collapsed and I was black and blue and sore all the time. Made the decision to have another port installed. The surgery is fairly simple, and you are home the same day. I am very glad I did it, no more 6-8 tries to get a vein, no more black and blues....
I know it is hard to imagine another foreign body. Good Luck in your decision and feel free to ask any questions!
I am so sorry to hear you are going thru this. You are in my prayers. I had a port in when I did chemo last year for my stage II cancer. Surgery was simple and after a while you get use to it being there. Accessing it is very simple and painless. I am glad I chose to have one. I am now stage III with progression to the lymph nodes in my neck and chest wall. On Ibrance and letrozole but if it does not work I may have to do chemo again and I would have definitely have the port put back in. Hope this helps and good luck.
Yes! Get the port! I received all my chemo through a port with no problems or pain. Kept it for another year, then had it removed. All painless.
I was asked by the surgeon if I was usually the passenger or the driver. Since I am usually the driver, the port was put where the safety belt would not rub on the port location (my right side for driving in the U.S.A.)
I had b/c in 2000 and it returned in 2017 with mets to lungs. The surgeon who biopsied my lung mets (which were b/c) ordered the port. I have been on Ibrance since that time and have used port for blood draws. I love it and plan to keep it. My oncologist does not suggest removing it.
Harriet keep strong! I had to answer bc sick as it sounds I love my port. The reason is I passed on it for chemo when first diagnosed andhave had terrible veins in chemo arm ever since. Now conrasts chemo blood draws all so elegantly easy! Much less anxiety and pain for me and the nurses!
Hello, so my story is stage 4 out the gate. My first round of Dose Dense Chemo was without a port at it was scheduled pretty quick after my PET results. My Surgeon was at a conference. Long story short, not a good experience without port. The IV infusion took over 5 hours and the "Red Devil" leaked into my arm. It collapsed the vein and left me with an ugly 5" scar on my forearm. So that vein so no longer viable. I later had my port installed which made the remaining treatments much quicker. I have since had my port removed and minimal scar on my chest and none on neck.
For me, if I have to go back on IV Chemo it will be with a port. I'm currently on 16 cycle of ibrance & letrozole.
I’m getting my port taken out. I had Doxil to it was great with port. An hr and finished. But I have a super port and it sticks out so far it gets caught on things. I mean it looks like a big tumor. You can only take so much Chemo, IV that is, so I plan on taking something by mouth since it works as well or better. It really didn’t do much except shrink a few non cancer like scar tissue, the Ibrance was stronger. My hair didn’t even fall out with red devil. Good luck to you and I hope things go well.
I am stage 4 also. Diagnosed last September. I am a NP and s already was familiar with them so easy choice for me. I have minimal veins normally so just went to port. Everything already written by others true. I will add infection of port not very common. Also you are stage 4 so remember treatments other than IV chemo also require frequent blood work. For last year have had blood drawn weekly to every 2 weeks. I definitely would strongly consider it ! I believe you will be happy with it. You use a numbing cream on skin before hand and you don’t really feel it at all.
I have regular blood work, but they don’t use my port, just a butterfly needle. I don’t have any problems or bruises. I will now because I’m sure I just cursed myself.😆
That I just don’t get unless they don’t have someone qualified to do port draws to do labs. They draw my labs with a butterfly through the port. That is the whole idea. I use a numbing cream before draws and it is pain free. You can’t overuse the port. Am I understanding you correctly?
Thanks to everyone who replied. You have all helped me get over the psychological hurdle I was having about the port. Called my Dr and said I wanted to move forward so hopefully we have it set before my next infusion in 3 weeks. Really appreciate your insight and support
You made the right choice! I was like you not sure, but with Red Devil you must have one, that’s what Chemo I took. It’s just a day of discomfort and take the pain medicine. I didn’t and regret that decision. Now they are not using it, plus I have a super port which I wish I would have asked for a regular size. Good luck please keep us all posted on how your treatments.
Hi everyone, well not surprising you were all correct! The surgery was smooth (except when they had to find a vein for the anesthesia) and I’ve already used the port for my third cycle of Doxil and for contrast for an MRI. Easy breezy. I don’t even feel that the prick is too painful compared to the vein search from before. I got a power port as they do a mechanical push when I have a CT. Having scans done on Friday to see if the chemo is working, finger crossed that it is!
I have what is called a "Power Port" and have had no problems with it at all. It lays beneath the skin. Use a doctor who puts lots of these in (mine happened to be a heart dr.). I have used it since 2008. I love it!!!!
Thx! Yes, the power port is important since the contrast for the regular CT’s are via mechanical push. Everyone was correct that it really does make things much better and stressful. This is such a great group for support and insight!
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