Need info about a Picc Line - HELP!

BShoemaker

Oncologist moved up appt. after doctors reviewed my case.  They have decided to start Chemo next week after I go through the battery of tests - MUGA, PET scan etc..  Blood was taken for the BRCA gene testing.  3-4 cycles of Chemo to shrink the tumor before surgery....advised a bilateral mastectomy would be the suggested way to go.  IDC in both breasts.  Anyway, they have me scheduled for a Picc Line placement next week and I want to know what the difference is between that and a port.  Someone please help!  I want to make sure I'm getting the right thing for Chemo.  Thanks, Bettina

billiegirl

I've had both. Loved my port. A port can be left in indefinitely, almost. I had mine for 3 years! But it takes a monthly flush by professionals for upkeep.However, access to it still take a needle poke, which really hurts(in my opinion). The Picc line goes in the arm and is usually more temporary.I think a Picc is easier to put in and remove. It is probably more practical since you will only be having 3-4 cycles of chemo. A port is usually put in your chest which probably wouldn't be appropriate if you are haveing a bilateral mastectomy because it would be in the way. They can use your PIC for the IV during surgery too.A PICC sounds like the best choice for you. AND< no pain when they access it! If it does not work out, they can easily remove it and do the Port surgery.

cakelady

Bettina....  I had a PICC line put in.  I had it in for 3  cycles of chemo and then I developed a blood clot near it and they had to take it out.  I still have 3 more chemos to go and I need some kind of new port now.  The PICC line worked fine until I got that clot.  It is placed in the inside of your upper arm, it is basically a permanent IV.  They thread it through a vein deep in your arm and it goes up your arm and into the chest area, but once its in there you don't feel it or anything.  You have to keep it covered and not get it wet, so wrapping your arm in Glad Press and Seal works well for taking a shower.  Also I had to go to the doctors office once a week for a cleaning and dressing change on it and they flush the line with saline to make sure it does not clog.  I wish I still had mine so I don't have to go through the process of getting another one, or getting a different kind of port.

The other kind of port a lot of people have is implanted in their chest, near their collar bone, and from what I hear most of them like it.  I think it is more of a surgery to get that one done,  the PICC line is quicker and with a local anesthetic.   I hope this helped some..... 

BShoemaker

Thank you for the feedback.  I appreciate it.  I just wish this was a bad nightmare & I will wake up any minute.... 

cakelady

I'm still wishing that its only a nightmare, and mine's been going on since December!!!  I still can't believe this is my life.

Anonymous

Hey Bettina,

I wish this were a nightmare too.  I'm so sorry that you're going through it.  Diagnosis to treatment is also a whirlwind; you get swept from one diagnosis to another doctor to a different treatment and it's all so fast.  I am six weeks out from dx and I'm finding that things do settle down once all the doctors are in place and the treatments begin.

Regarding the bilateral...  I'm 4 weeks out from my bilateral w/immediate reconstruction and it was a piece of cake.  Really.   Very little pain, arm movement normal right after surgery.  And my new boobs are gorgeous!  If it weren't for the scars under my breasts, you couldn't tell that I'd had surgery. 

I don't know about PICCs vs. Ports (though I'll have a port put in very soon), but sounds like billiegirl has covered it, and so has cakelady.  Being young and in shape really really really helps with this; if you're physically fit and under 40, you're going to do fine with all of this.  Everyone will tell you this, but drink lots of water and try to get some exercise in every day while you're doing chemo...  I can't tell you how many chemo ladies have told me that hydration and exercise really help with the side effects.

I hope you're feeling good about your doctors and medical care.... let us know what your test resuts are, okay?

Thinking of you...

Hugs,

Laura  

dlb823

Hi, Bettina ~  I was just about to post to your other thread when I saw this one.  Did you decide against a second opinion?  A port or a PICC line is only needed for certain kinds of chemo.  I had TC -- the newest regimen -- and did not need either one.  I don't think you shared your diagnosis with us on the other thread, but do you know what kind of chemo you'll be getting?   

Thinking of you ~   Deanna

Brenda_R

I guess it depends on how long you need it. My Mom had a Pic line when she had leg surgery. It was only in a week or so. Later she had a triple lumen central line placed. That had to be flushed daily. She didn't like either one, but her veins were tiny and blew easily, so she had to have something.

I had a port, but I needed something I could use for over a year. 

Carolina59

Bettina, I had a PICC line and had no problems with it. I had 6 rounds of chemo so had the PICC line in for 3 1/2 months. It makes administering the chemo SO much easier, and completely painless physically. It also doesn't leave a scar.

I also had cancer in both breasts (IDC in one, DCIS in the other) and had a bilateral mastectomy. You are definitely in the nightmare/surreal phase of diagnosis, testing and beginning tx. It will get easier. I'm sorry you're going through it.

BShoemaker

Hi Deanna, sorry I didn't post back on the other topic.  What happened is I wasn't supposed to have my oncologist appt until June 4, then I got a last second call to come in & see her immediately.  They mentioned Chemo & Picc Line and I freaked!  I got a little good news, but mostly bad in my opinion.  My left breast is not bad and not an immediate concern & was grade 1, but the right breast has a VERY aggressive tumor about the size of a walnut & they found a few other small tumors in the same breast & was rated Grade 3 -bad, bad, bad.  I am HER2 negative which was good.  The oncologist told me I needed to start chemo right away to shrink the tumor - 4 cycles, 1 every 3 weeks.  I am supposed to start on Thursday next week.  They have scheduled me for a PET scan, MUGA scan, teaching class for what to expect on Chemo and Picc Line placement. Every day before my Chemo I have some sort of test to take.  I will be doing Chemo before & after surgery.  What was interesting the Nurse I met with questioned my doctors choice of putting in a Picc Line and thought I really didn't need it, but the doctor told her she wanted it in.  I have not have any time to breath, let alone deal with a 2nd opinion.  Everything has happened so fast I have not been able to think straight.  I felt good about my Oncologist so that was good.  I won't meet with the surgeon until June 8.  I will be getting Taxotere and Cytoxan.  They took my blood for the BRCA test.  They will consider removing my ovaries, hysterectomy and advised I will more than likely have to have a bilateral mastectomy.

My main pain in my a** right now is dealing with the Insurance.  Everywhere they are sending me I have to confirm they are an "in-network" provider for the best coverage and I'm having a nightmare getting different answers from everyone for my Muga scan. I almost lost it today.  I'm going to get my NP involved tomorrow morning because I have no time to deal with this crap. I told my bosses & HR today.  Boy that was fun....I starting crying and couldn't even get the words out.   

Anyway, so far they are being very supportive.  Hubby is going with me to all my appts which is a comfort.  My dad is coming down for my first chemo treatment.  Not looking forward to going bald, but I guess surviving is more important eh??  He was there when my mother went through it back in 1974...I think he is freaked.  Of course it was way worse then, but nevertheless my heart is breaking knowing he has to relive this as well.  She died at age 33 so as much as he is screaming we are going to get through this, I'm sure he's really struggling with this.

Anyone going through the same Chemo regiment?  Any tips??  I'll take em!

Thanks Kaidog..appreciate your kind words...you are always so helpful.  Can you tell me exactly what happened with your reconstruction.  The steps of what they did?  I am still weighing this over.

Thanks to all of you for your input and help.  It is priceless & I don't know what I would do without you!  Bettina

Anonymous

Bettina - I'll PM you with the reconstruction details.  I'm off to work today early... I'll send you my phone number, too, and you can call me.  Hugs.  Laura

BShoemaker

Thanks Laura, appreciate it so much!  No rush...I've got plenty of time to mull it over anyway. 

Hugs, Bettina

lemont

Bettina, sorry for all you're going through. I was diagnosed last July, IDC and DCIS in one breast, both tumors were grade 3. I had 4 cycles of TC. I had two lumpectomies, then bilat mast, then a bilat mast revision and capsulectomy. No reconstruction.

Anyway, I have had other health problems so knew from the beginning that my veins are not useable. I had a PICC line for a previous (non-bc-related) surgery. It's quick, local anesthetic, but intended for short-term use and it hangs outside your arm. I had a port placed before chemo. The procedure is more involved, done under sedation. I got an infection that cleared with oral antibiotics. But the port required a lot of trial-and-error to get it to work, and eventually it had to be replaced (same procedure as the first one).

I finished chemo in December but I'm keeping the port for blood draws and semi-annual Zometa infusions. It's internal, requires a flush once-a-month. I can swim, bath, whatever. If you get a port, see if you can get a PowerPort. It can be used for CT scans, the regular kind can't.

Best of luck to you,

Cinda

lemont

Bettina, forgot to say anything about the TC. For me the toughest part was the unpredictability of the side effects. There are a lot of them, so you're bound to get a few. Nausea/vomiting is less likely with TC; I didn't have any. I had a sore mouth and couldn't taste anything much of the time; I lived on chocolate milkshakes (nice to have an excuse) and Au Bon Pain soup. I also had terrible hives and itching but the docs don't think it was from the chemo (even though it stopped when the chemo stopped - go figure).

I got a great wig - get it at a cancer boutique if you can - my family chipped in to help pay for it. It was $400 but it was best money spent in the whole deal. It really helped keep my spirits up. You can see in my pic that my hair is growing back but kind of looks like a dog with mange. My husband says "better a bad hair day than a no hair day."

Cinda

BShoemaker

Hi Cinda, thanks for the response.  Can you tell me how you feel about not having gone through reconstructive surgery?  Are you happy about it, because I am considering just letting them both go without reconstructive surgery as well.  I haven't met with the surgeon yet...another week before I meet with her and really delve into the subject, but the though of the longer healing and pain, scars etc...makes me want to puke.  I get sick to my stomach every time they pull out a needle to take blood....seriously.  I have lost 10 pounds in the last 2 weeks from no appetite.  What kind of soup did you prefer during Chemo?  I am going shopping and am trying to get an idea.  Also, for your surgery...why did they bother with the lumpectomy's first?  Why not just get the bilateral right off the bat?  So your saying you had 3 different surgeries?  Not sure what capsulectomy is...that's a new term for this newbie! 

Thanks!  Bettina

hrf

I had a PICC line for my first round of chemo (CEF) because I had small veins and needed 12 tx. However, the insertion of the PICC was difficult, it stopped worked after 1 month and had to be replaced. With the second one I developed blood clots (thrombosis), infection, and other symptoms - ended up in hospital for several days - cellulitis, transfusions. PICC line came out!!! This time I have a port - only been here for 2 rounds but working better than PICC. In both cases I am injecting daily doses of Fragmin to avoid blood clots.

lemont

Hi BShoemaker.

About not having reconstruction ... I've had many surgeries for other problems, including a permanent ileostomy in 2000 for Crohn's Disease, so I'm not bothered by freaky-looking things like having my small intestine sticking out of my abdomen or having scars where my breasts used to be. I chose C cup prostheses (I was a D or DD) and I think they look really good. I'm very pleased with my choice. It wasn't a hard choice for me and if I ever change my mind (very unlikely) I could have reconstruction later.

About the soup, since everything tasted pretty much like cardboard, I went for textures that I like. Since I didn't eat much else, I ate hearty soups that had noodles/pasta and vegetables. 

My surgery story does seem to be unusual. I don't think I've heard of anyone having 4 surgeries for one bc diagnosis. Diagnostic tests and biopsy showed one IDC tumor, so I had the 1st lumpectomy and SNB. Then path rpt came back with no clear margins, so I had a 2nd lumpectomy. That path rpt showed a DCIS tumor (also grade 3) and again no clear margins. Too much tissue had already been removed from the rt breast so mast was required on that side. I chose bilat mast instead; the path report this time was clear for both breasts.

Went on to have chemo. In the meantime, I developed a huge, very hard swelling in rt chest and underarm that turned out to be fluid and blood trapped in a "capsule" of scar tissue. In April, they "revised" the bilat mast (basically a do-over), removing the capsule and excess skin on both sides. 

Cinda

BShoemaker

Wow Cinda, sounds like you've been through more than I could ever imagine.  You must be one strong woman!  Good grief!  Thanks for sharing your story...

Bettina

pbcc1

As far as port versus PICC..... I would opt for a port. They have a new power port, that can also be used to inject dye for tests. The port is completely enclosed under the skin (like a pacemaker, but smaller). The PICC line will hang from your arm giving you a direct line to your circulatory system. True, you don't have to be stuck with the PICC, but they are to high maintenance for me. I get my port flushed every 60 days, and u can use either some EMLA cream (rx item) or have doc get some ETHYL CHLORIDE to spray first.. this freezes the skin... I never have a painful port access, and I have had mine for 3 years now. The port also conserves your other veins just in case you need them for blood draws etc.

Anonymous

Bettina, you can wait on the reconstruction.  There's no need to rush.  They can always do it later...

BShoemaker

That's good to know...I didn't realize you don't have to have it right after the mastectomy.  Hmm....decisions, decisions!

KinAZ

Hi Bettina,  I did not have anything for my chemo and now my veins are shot....had chemo before bilat mx......and ended up having 6 surgeries in 15 months, but only 3 bc related.....i am in the process of reconstruction and they had such a hard time getting an iv in that my ps had them put a picc line in during surgery to remove the expanders due to infection....this way i could get iv antibiotics at home....i had a nurse come to the house once a week to flush the picc line and check for a blood return...we had a lot of trouble getting the blood return.  she would have to order the declot med, come back the next day and it usually took about 2 hrs to work.....as mentioned you must wrap it for showers and swimming is out of the question......it was convenient, but in the end i wish i would have had a port for chemo..... best of luck

hugs, karen

cakelady

I had 3 surgeries......first a lumpectomy and lymph node biopsy,  but they didnt get clear margins, so an 2nd lumpectomy, and still found more DCIS and IDC.... so then a mastectomy....I only needed right side done, but I chose to do both so I could get thru chemo and then decide on reconstruction.. they would not do immediate reconstruction on me.  Since I was a DDD I didnt want to carry around that much boob on one side, only to have it reduced later and also would have worried about BC showing up in that side later.  I am still in chemo, 2 more rounds to go and then Herceptin until next March. so any plastic surgery is at least a year away.  I have to get a port installed too, my PICC line was fine for 2 months and then I got a blood clot so they had to remove it.  My veins are small and hard to get for an IV so my last chemo left bruises all over my arm.  I have to wait until I am off the blood thinner meds before they can do the port.

I have not decided for sure about reconstruction, but for now I have prosthesis that are size C and it is nice to not be so big.......

BShoemaker

Thanks everyone!  I did get the Picc Line.  I was completely freaked about it because I hate anything that involves a needle...I have major needle anxiety.  Of course I only felt the prick of the Novocaine when they did it, but was stiff as a board during the entire process.  I'm such a wuss!  Anyway, it bothered me a little for 2 days in that my arm was sore, but today was my first Chemo and I was THRILLED to have the line in.  I watched so many people getting pricked and could not have been happier to have my picc line.  Yippee!

My first chemo went very well...no complications or bad reactions.  I'm so glad!

Thanks again everyone!

Bettina

crazy4carrots

Hi Bettina:

Just wondering how you're feeling today?  Thinking of you...

Hugs, Linda

pshelton

Bettina,

Good to hear your first went well.  Gives me hope as I'll be there in another 3 weeks or so.  I am going to request a picc line.  I'm a nurse and made that decision.  I have the smallest veins as well and had the hardest time this time in the hospital being stuck and actually have phlebitis now in my left arm from it.  So to make sure I'm not dealing with difficult sticks and blowing a vein during a chemo infusion, picc line it is...good luck with everything!  Paula    

BShoemaker

Hi Linda,

Day 2 and still doing great.  My only reaction today has been a flushed red face & chest.  I'll take it!  I'm a little sleepy, but my doctors office says it's because of the Compazine I'm taking to ward off nausea.  I haven't had any other issues so I'm thrilled. 

Paula, the Picc Line is truly a godsend for me!  I mean I HATE needles so this is a lifesaver for me.  It really took away 90% of the anxiety for me.  The only issue is you have to wrap it with saran wrap to shower...I also use a shower sleeve as well that I picked up from the drug store for extra precaution.  You have to get it cleaned once a week, but to me it's all worth it!  Since your a nurse, I'm sure your already aware....but sounds like your a good candidate for the Picc line as wel!

Good luck to you as well...let us know how it goes.

Bettina