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I'm soooo friggin' PO'd!

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

Just another example of why you need to be your own advocate.

Standard treatment protocol for MMMT is usually 3 rounds of chemo, radiation, then 3 more rounds of chemo. I finished the first half of the chemo and all the radiation and was "recovering" for the last few weeks. I met with my oncologist for the first time since early October and happened to mention that I haven't had anything done with my port in almost two months.

She told me that I should be having it flushed every four weeks and she apologized if no one told me. Sure enough, when I went to have labs done they could not get anything from my port. Its clogged and after two hours of having stuff flushed through it...still...nothing. So now I have a port that doesn't work and I have 3 more rounds of chemo which actually involves 9 more chemo treatments (I get chemo, 3 days in a row).

I cannot believe that no one....not the radiologist that put it in, nor the chemo nurses that use it and draw blood from it for labs, nor my oncologist or her nurse, or the oncologist/radiologist or any of his staff, ever mentioned one thing about having my port flushed monthly. Yet every time I go in they ask me if I'm taking my "multi vitamin". Apparently there are dire consequences if I don't take that horse pill every day.

Next week they are going to try one more thing to unclog it (I think something with the radiologist who put it in), otherwise it looks like I"m going to have to role up my sleeves and have them stick me again. No way am I getting another port.

Just posting this so others don't make the same mistake I did.

Thanks for letting me vent.

Cindy

nempark
Posts: 596
Joined: Apr 2010

Iwas also dx with MMMT, 2 year since. Anyway, my 45 year old daughter has been dx in November and is having treatment. It's a joke, whenever we go for treatment it is always a confusion what treatment she is really going to have. I have a note book and I write everything done. Sometime the nurses even ask me what meds she had yesterday. Just a joke. Cindy I am sure they will manage to get it working again. Be well my dear and don't get too stressed out, but you should let the administration know about it. By the way I had only chemo and they did not give me a port. June

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

I did read about your daughter's diagnosis when you posted it a couple of months ago and I'm so sorry that you have to deal with that now on top of everything else. It feels like piling on, doesn't it? I'm having anger issues but what are you going to do? I think my nonchalant, go with the flow attitude came back to bite me on this one.

Take care,
Cindy

Kaleena's picture
Kaleena
Posts: 1213
Joined: Nov 2009

Cindy:

I am so sorry to hear about this. It just makes you mad when they expect you to know stuff. I had my port in for 6 years and just had it taken out. I was told that you needed to have it flushed (when finished with chemo) every 4 to 6 weeks. I found out that if I waited to near the sixth week sometimes it was hard to flush.

Also, it could be the nurse that was trying to flush. Some nurses "miss" the spot. Yes they can miss. Sometimes you need to move in different positions. Sit straight up - stick your chest out. Sometimes they make you lay down. Whatever works.

Ask for a more experienced nurse with ports to try to flush and draw blood.

***One nurse that I had I called her the "fisherman" 'cause she would use the needle as a fishing hook and try to hook me. It felt that way too! She was the only one that hurt me. Other ones can be so gentle and quick.

Here's a good one too. The reason I had my port finally taken out was my local hospitals refused to flush it anymore because my doctor was not in their network. Although they would take it out. So for 5 months it just sat there and was literally useless then.

You keep being your own advocate, Cindy. I hope it all works out for you.

Kathy

P.S. At one of my port flushes (you know it only takes 10 minutes, they had me waiting 1 1/2 hours and then I got the "fishernurse". I was so upset I ended up getting pulled over on the way home because the officer said I went through a red light - I said it was yellow.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Cindy, what a shame!! I think you have every right to be PO'd/ I agree that no one would know about port maintenance - sure isn't something we deal with very much. It's probably written in fine print somewhere. And you're right, we need to ask questions all the time and be EXPERTS in our treatment because in the end, we are the end left with the clogged port!!! Shame.

I'm curious about a radiologist putting it in- radiologist? My gyn/onc referred me to a vascular surgeon!! (I've had mine for 3+ years, get it flushed every 8 weeks now and everyone loves it!!)

Mary Ann

JoAnnDK
Posts: 276
Joined: Jun 2011

Oh, Cindy, what a shame you are having to go through this and you are right to be pissed off. This is inexcusable.

My port was put in by an "interventional radiologist", a minimally invasive specialist....someone who has done a fellowship in vascular and interventional radiology after his/her radiology residency.

From a list of procedures they do, here is the one with ports

" * Line insertion:

Vascular access and management of specialized kinds of intravenous devices (IVs) (e.g. PIC lines, Hickman lines, subcutaneous ports including translumbar and transhepatic venous lines)"

My regular radiologist told me that this type of specialist is not available in every hospital.

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

I guess you answered the question about why a radiologist can put in port. I'm really not concerned that it was inserted incorrectly as it seemed to work perfectly right from the start. I will be shocked if they can't ultimately get it unclogged.

Cindy

Kaleena's picture
Kaleena
Posts: 1213
Joined: Nov 2009

Mary Ann:

This is the new thing. When I was trying to get my port out, they wanted me to go to a radiologist and have some intern or I think it was P.A. take it out. I said, "right". Of course I didn't do that. You were like me, I thought it has to be a vascular surgeon. When something involves stuff around my heart and insides, I want a surgeon.

It seems that the radiology department is involved with all port insertions and they are actually doing most of them now. When I had mine put in, they put me under. But as I understand now, they don't. I finally did find a doctor who removed mine. Yes, he was with the radiology department, but he was a surgeon. I was awake for the whole procedure too.

Kathy

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

What a shame you have to now really start asking everyone. What happened to the days of us going to a doctor "assuming" they are the authority on our health and having them tell us what direction to go??????? I'd be PO'd too. Sorry to read this maze you've endured.

I had my POWER PORT put in by my OB/oncologist 3 years ago. I was told prior to each chemo session should have the port flushed while they as well take blood work for my readings. I completed treatments July '09 and only have it "flushed" at each follow-up appt which started at every 3 months and today every 6 months. The last 2 times the RN's aren't able to pull blood via the port or if have success it starts the flow of blood and stops. NOTE, each time yes they do FLUSH THE PORT...which is what we ultimately want. I asked the RN this past week about it being "clogged" and her response -- usually some small pieces of skin cover the opening and when I really try to force blood thru port, it closes and stops. If you wanted I could have you sit here for approx one hour as I force a certain chemical/drug into the port which will open it up to full flow once more. Since I'm not having chemo infusions, not necessary.

My doc told me having port flushed every 6-months is just fine and not worried about the blocking. No talk about mine being removed, but other women who've had their removed either went to hospital facility as "out-patient" or doc has done it in their office with a mild sedation.

I'd ask about other options to open up the port.... Lastly, when I had blood drawn for my PCP yearly appt, the RN at this hospital educated me on why a port is so necessary for chemo. Educated me on the people whom she sees having gone thru chemo 15 or so years ago without a port. Today their veins are just shot, and almost impossible to draw blood for general numbers...I don't wanna be one of them many years ago. Chemo is so tough on our veins...simply destroys them. Not wanting to alarm you, but keep this in the back of your mind.

Hang in there!
Jan

Ro10's picture
Ro10
Posts: 1474
Joined: Jan 2009

Before I had chemo I had excellent veins. I asked about a port before I started chemo and my gyn/Ono told me if I had good veins I did not need a port. I was on the sandwich treatment, so I thought my veins would recover while I had my radiation. WRONG !! For my fourth chemo I had to be stuck feve times---3 for lab and2for chemo. After that chem I had febrile neutropenia and ended up in the hospital for a week. I had an abscess in my abdomen and had multiple sticks for antibiotics and lab sticks. I decided then to get a port. I do not regret that decision.

When I had my port inserted I go an ID card to tell what kind of port I have ( a power port). On the back it tells what the flushing protocol should be. I have to show the card before I get a CAT scan as not all ports can be used for CAT scans.

I have gone 6 to 7 weeks between flushes. I have had times when my port would not draw blood, but this is when I was getting chemo every three weeks. I had to have the medicine to open the port twice. I had stopped taking my baby aspirin when I was on chemo. Since I started back on the baby aspirin I have not had any more problems with the port.

I too would have the port reinserted if I had a cancer that could recur. It is much nicer to have them stick the port for lab, chemo, and CAT scans rather than poking and prodding for a vein. Hope they can get this port "unclogged" for you. Good luck with your decision. In peace and caring.

RoseyR
Posts: 464
Joined: Feb 2011

Had sandwich treatment with five weeks of radiation inbetween and seemed to have no trouble iwth any of my "sticks" whether for lab tests or chemo.

But now I am worried by what I read here.

And if I have a recurrence, I should surely ask for a port? How large are they? How visible are they? How long do you have to keep them in? Years?

Thanks,
Rosey

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

Well unfortunately I have 3 more rounds of chemo starting Wednesday which in itself isn't so bad, but I have it 3 days in a row so that's nine more doses of chemo. I just can't imagine getting another port in the next month and a half when I just had this one put in, in September. I'll probably suffer with chemo in the veins ( and live to regret it) and if the cancer comes back, get another port at that point. On the plus side, I won't have to worry about jinxing myself by voluntarily taking a working port out just in time for summer, which I had considered.

Take care,
Cindy

janh_in_ontario
Posts: 110
Joined: Sep 2010

If you had chemo 3 years ago - why would you still have a port? Don't you just have chemo and then the port gets removed? Is it understood you will be using it again?
Jan

Kaleena's picture
Kaleena
Posts: 1213
Joined: Nov 2009

Jan:

I had my port in for six years. When I was done with chemo, my doc said wait until the next scan, then it was the next and thereafter. Then that doc retired. The newer doc said he felt superstitious since I had been NED and wasn't ready to take it out. Another doc said it is easier to take out than put in so leave it in a bit. Next thing I new years past. Then I couldn't find anyone to flush it so I eventually had to get it out. When I did, I did have some anxiety attacks though. Just got it out in July of 2011. (port was put in Nov of 2005).

Kathy

Ro10's picture
Ro10
Posts: 1474
Joined: Jan 2009

The reason I had a port inserted because with the diagnosis of UPSC I was told it was not curable------ but treatable. So I figured I would need chemo again. Because my CA 125 has immediately raised after I stop chemo I have frequent lab tests and CAT scans, so my port has been used frequently. I even had a second round of 7 chemo treatments. The second round required 2 days of treatment each time. And I expect I will need a third round of chemo very soon. I know my peripheral ( arm) veins could not handle all this. Therefore I highly recommend a port for anyone having chemo.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I am getting irritated when I read that some of you haven't been told about damage to veins and never got a port as result. At the very least this should be a decision you make instead of some doctor that doesn't have chemicals flooding his/her veins. Darn it!!!

I continue to admire the good care I get when this happens. My doc recommended a port first thing and said it would save my veins. When I found that port was inserted close to heart I inquired about heart damage but vascular surgeon said that it goes into heart so fast that it is immediately flushed out.

The port has not inhibited me in any way - I have participated in very active exercise - like rowing machines and other machines. I have had no trouble with my port and I have kept it in due to type of cancer I am dealing with - highly recurrent. Like others have said, I'd rather maintain it (flushing bi-monthly) than more surgery to reinsert another. As I think back, I think it was the chemo nurse that told me about flushing and I would go to the lab regularly just for the port flush. Shame on them for not educating you.

What is happening in our healthcare system? apathy? ignorance? Darn it - it's not right.

MA

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

They don't just pull out the port when treatments are over. Seems like the standard with most docs, leave it in for anywhere from 2-6 years, as if have recurrence surely don't want to go thru having another one implanted again. I've got a friend who finally had hers removed after 7 years. As long as it's comfortable and being flushed it should be fine.

After a few of you posted about how often have the port flushed I called my docs office. Asked about my follow-up appts being every 6 months, what's recommendation for port flushing as now I'm doing it at the 6-month appt ONLY. Suggest to all patients who are not in treatments, every 2-3 months. I'll go in every 3 months...... In the scheme of things, this was never at forefront of my mind, and apparently not my docs. Not a big deal!

Ciao!
Jan

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

I can think of a few different times that I should have been told to flush the port. The chemo nurses knew that I was going to take a "break" to get radiation so they should have told me and I met with my doctor's PA right before my last chemo treatment and she should have told me. I also talked (or argued) with my oncologist's nurse about how long I would be on this chemo break, thinking it was much too long, and she should have told me. But then I guess if I would have read the literature that came with my port, I wouldn't have had to have anyone tell me so I have only myself to blame.

With regard to unclogging the port, they did put something in it and I sat for first a half hour, didn't work so then another twenty minutes...still nothing. They are trying one more thing next week so hopefully that will work.

I'm curious, you say you only have to have it flushed every six months? That's amazing to me. I have a power port as well so then there shouldn't be any excuse for them not to get it working again if they can unclog it after six months.

Take care,
Cindy

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

I dug out my pamphlet on my port and in one of the Q&A sections they did say to have it flushed every four weeks. Guess I should read the literature, but who knew that something so important wouldn't be shared verbally as well. Ahh well. I guess I have only myself to blame.

My port was put in by a radiologist, not sure what other "titles" they had but it wasn't the same one that did my radiation. I have a friend who just found out she has lung cancer her radiologist did her surgery to remove her tumor and put in her port which I thought was odd. Anyway I don't think the problem was with the port because it worked wonderfully at first.

I'm surprised you can go as long as 8 weeks. What kind of port do you have?

Cindy

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

I did ask the nurse if she missed the spot but she didn't seem to think so. It has been seven weeks since my port was accessed so I'm sure its clogged. They had me doing all kinds of calisthenics, but nothing worked. They have one more procedure planned for next week to get it working, not sure what that involves but I'm sure I'll have an opinion about it.

Cindy

paris11
Posts: 132
Joined: Oct 2010

Hi Cindy,

Your Med - Team is responsible for your care!!! Very few, if any, persons with cancer can read and assimilate all the literature.

II think we have all had bad experiences with treatment. I think that we all are noble and exceptional. I have my moments of FURY but

I try to move forward.

My stents were neglected for six months. The md's response, "Holy ****, we forgot to remove the stents."

Needless to say, I no longer see him!!!

Connie

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I agree with Connie - not to blame yourself. Those pamphlets and disclosures probably help in litigation. But your health team really has responsibility to inform you and help you in this path.

Re: my port. Just a regular "Bard Port". I started with flush every 4 weeks, then asked to stretch to 6. Since no problems, and oohs and ahhs from everyone, I was able to negotiate the 8 week interval. With changes of insurance I incurred costs up to $200 for a single port flush (bad story) so frequency was a big issue for me. It's all worked out now. But again, it's important for us to read the fine print - when I switched to my husband's insurance when leaving my job due to cancer, I read policies and they looked alike. Well, surprise when the fine print considered my port flush facility to be a hospital where my co-pay for outpatient procedures is $300. A port flush was billed at nearly $200 therefore, no coverage for me. It took me months of aggravation, advocacy, poor advice, and begging/pleading for me to get to my current situation. American health care - what are the answers for us??

Cindy, in the end you will get through this as I eventually did. I learned that even if a door shuts to go back to that door again and knock loudly and earnestly on it. When I asked for help again from a facility that rejected me before (to get my port flushed), my phone call reached the office manager who, in turn, asked the staff if they would help me (a patient with another oncology practice who could not flush my port) - and lo, a wonderful doctor offered to take me on as his patient for the sole purpose of doing me an act of charity - flushing my port. What grace. A lesson for me - to give my gifts to others when they are in need.

Cindy, have you given feedback to your health team about this? They really need to know that this omission has caused you pain in many ways. This will help another.

God bless. Mary Ann

JoAnnDK
Posts: 276
Joined: Jun 2011

Cindy wrote

"I have a friend who just found out she has lung cancer her radiologist did her surgery to remove her tumor and put in her port which I thought was odd."

Maybe it was one of those radiologists with a sub-specialty. I think we all think that radiologists just do scans and X-rays and ultrasounds. But the ones who are specially trained to do many other things.....

JoAnn

I Will Survive
Posts: 27
Joined: Aug 2011

Cindy, I agree with Mary Ann — you really need to let your team know about this lapse in information. Every person who could have/should have informed you should be told that they dropped the ball.

Of course, let them know this is the nicest possible terms, but through clenched teeth! LOL

Hannah

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

Good news!

I went in today to have what is called a dye study which is exactly what it sounds like. The radiologist inserts dye into the port to see where the blockage is and I assume allows them to determine whether they can fix it or not.

When the technician (or nurse) accessed the port she immediately was able to draw blood. So miraculously, it was no longer clogged. They aren't sure why...maybe the stuff that they used to try and dissolve the blockage eventually worked or maybe it was because I was laying down flat on my back. Who knows. They still did the dye test and everything looks fine.

I spent the rest of my day so darn happy, I could hardly wipe the grin off my face. How sad is that. LOL

Tomorrow, I start chemo and I get to use my port. Whoopie!

Cindy

Ro10's picture
Ro10
Posts: 1474
Joined: Jan 2009

Good luck with your chemo tomorrow. I can relate to you being so happy to see blood from your port. I am so relieved everytime I see them get blood when they withdraw from the port. In peace and caring.

Kaleena's picture
Kaleena
Posts: 1213
Joined: Nov 2009

Cindy, I am so happy for you that your port is working now! What a relief for you!

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

So glad this resolved!! And I chuckled at your comment about being happy you can use your port for chemo. It is incredible what we can be grateful for!!!

All the best to you as you soldier on!! Mary Ann

txtrisha55's picture
txtrisha55
Posts: 429
Joined: Apr 2011

Cindy,
It is pain having one but I do not think I would have made it through all the blood draws, chemo treatments, and dye for scans if I did not have one in. I was going every 4-6 weeks for a flush but when I told my onc dr. she was highly upset and who told me that. She told me every 4 weeks I want you to get it flushed. So every 4 weeks I get it flushed. I kinda wish all the Onc Drs would get the same advise and treatment protocol. So many ladies on here have different chemo treatments, radiation, therapy treatments from all Onc Drs and Cancer Centers. It does not seem like any just do one thing alike. It makes it very confusing when a person is searching for answers.
Anyway I have a friend I work with that she went through OV Cancer and they had to lay her down every time to access her port. The one time I had to lay down at a CT scan, the nurse stuck me 4 times before she could access the port. The next time I needed a scan I went to the cancer center first then walked back to the Imaging Room at the hospital already accessed. Then the imaging tech said they had no one to remove and flush so I had to walk back to the cancer center to get them to remove the access and flush it. That nurse reported it up the chain of command and I got a call from the Imaging Department to ask me about it. That was when I learned that you are not getting anyone in trouble when things are reported but you are helping them fix any problems for someone else down the line.
Glad your port is working now and they may have to have you lay down again to access it. Good luck tomorrow, will be praying for you. trish

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

Sounds like all hospitals are the same in one way. It takes "experts" to handle a port. I mean seriously, I think I could probably access and flush a port, how hard can it be. I had the same issue when I had radiation. They apparently didn't have anyone in the hospital that could handle a port so I had to go over to oncology for my blood draws. How bizarre.

Thanks for the prays...chemo went fine.

Take care,
Cindy

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

What I've found in hospitals, the one who must access your port must have been "officially trained", otherwise can't access. Had this happen to me a few times and I just told them, heck use my veins. Not like I'm getting filled with tons of toxins from chemo, just needing some blood drawn. Think it's all part of the protocol with training!!!

Happy to hear you're back up and running....

Jan

Ro10's picture
Ro10
Posts: 1474
Joined: Jan 2009

Hope everything went well today,and you are doing okay tonight. Hang in there and take it one day at a time. In peace and caring.

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

I'm usually good until Friday, then the aches and pains come. I can hardly wait.

Cindy

carobearo
Posts: 1
Joined: Mar 2013

Although I have always been needle-phobic, I didn't want a port installed. And my oncologist said that I didn't have to get one. We hoped for just one round/4 pre-surgery infusions of adriamycin and cytoxan. But I did have to have a round of taxotere after my mastectomy because they found cancer in two sentinel nodes.

After reading all your comments here, AND after having endured this tissue expander in place of my removed breast  for 12 months, I am REALLY REALLY glad that I didn't get a port. 

I hated the infusions and all the blood draws, but I know I would have hated the port more. The port is with you 24/7 (like my expander), whereas the needles were only in my arm for a few seconds to a few hours every two weeks, and there's no maintenance. The risks associated with venipucture seemed quite low to me, lower than the risks associated with the port. The infusion nurses pushed me hard to get a port. One male nurse even stood over me and yelled at me in the infusion room while shaking his finger in my face. But no one ever told me about the maintenance, or about the port possibly being left in for years--this is the first I've heard of it, having signed on to this web site yesterday after 18 months of cancer treatment. 

It's true, I'm a very active person, so this may be why things implanted into me bother me so much. It hurts a little to get hit in the chest with a frisbee. I don't even want to think about what it would be like to get hit in the PORT with a frisbee. When I pointed this out to above-mentioned sociopathic nurse, he admitted that this would be problematic and told me that I could just NOT PLAY FRISBEE. Hunh? No, sorry.

I use machines at the gym that involve pressing my chest against a pad while pulling weights toward me. Not port-compatible. I can think of all sorts of other activities, including sex, that would be severely restricted by the port or that would damage the port and send me to the emergency room.

I guess if one is normally very sedentary, does not lift anything heavy or ever lie face down, and also is not very sensitive to tactile sensations, the port could be a reasonable choice. In my case, I really regret having the expander placed during mastectomy. I'm constantly aware of it, even when I am not moving.  I should have waited to see if there was cancer in my lymph nodes, but I was "so sure" that the chemo and surgery would be all I'd need. So I lost that bet, and the expander has been nothing but grief and restriction. 

Just thought I'd add another weird perspective. :)

 

 

 

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I hear your thoughts on the pros for no port.  I'm an active person as well, but found to never really bother me, outside of first month when the area was somewhat sensitve.  If one is a bit thinner, as in my case, it as well can "stick out" more and cause issues.  Must tell you, I had NO issues at all, and today 4 years after it was inserted, we're good buddies.  In fact, don't really feel it unless I hit my chest in the spot where device is located.  

What I have found disturbing via friends who are RN's and draw blood from many patients,  When chemo drugs are administerd intravenously, the veins can end up scarred and weakened.  Many people avoid this complication by having a port prior to chemo infusion process.  Bottom line, if infusions aren't via port, the veins become very brittle and weakend, causing blood drawing almost impossible many years later.  I look at chemo drugs like pouring gas down plastic pipes....gas simply errodes the plastic.  

As well, you have had expanders due to the breast cancer and can see the port possibly causing issues.  

Two sides to every story.....and we all do what we feel is best~  

Hugs,

Jan

 

 

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