STEAM ROOM FOR ANGER

mara51506

My cancer centre uses my vein when taking blood sample before I see the MO and then uses port for chemo infusion or scans that require contrast. The only exception is when I have my regular echo. Nurses are staffed in there plus obviously I could not have iv line hanging out while checking my heart.

Lita57

I have severe lymphedema in my left arm. That's the side the cancer is on (I'm st 4), but I never had a lumpectomy, mastectomy, or a lymph node removed on that side. So what gives?

MO says it's the chemo I'm on now. One of the biggest, and most common SE's is lymphedema (sigh), and it doesn't matter whether you had surgery or not.

It stinks b'cuz I'll be stuck w/this for the rest of my life now.

L

mara51506

I agree Lita. In my case I keep my fingers crossed it does not decide to come to me. I think it will be the luck of the draw for me.

molliefish

Leidy, that's shitty.

exbrnxgrl

I am fortunate in that my all inclusive HMO, does nothing unless they intend to fully utilize it. i.e. If they’re putting in power ports, they have personnel in the ER, nuclear medicine and of course the infusion center who can access it! But I really do believe that the problem for many is simply a lack of port trained nurses

LoriCA

Jaycee my oncology nurse always offers to access my port before a scan, but the imaging center where I get my PET/CT scans done (located in a hospital) says they still aren't allowed to touch the line. The same radiologist (doctor) who reads my scans handles the entire process from injection of contrast media, performing the scan, reading the scan, and writing the report. My (breast) MRIs are done at the Women's Wellness Center at my hospital, but it's in a separate building. My brain scan was done in a hospital imaging center. Frustrating because it's not like I live in a rural area with a shortage of qualified staff, I'm fortunate to live in an area with a plethora of top quality medical services & personnel who deal with a high number of cancer patients. They just don't want to be bothered with arranging for someone from a different department come to the imaging center. But I end up throwing off their entire schedule because it takes 20-30 minutes just for them to find a usable vein! My experience with the brain MRI has made me decide to put my foot down, even if it means changing where I have some of my scans done. This fall we have two new major cancer centers opening no more than 20 minutes away, and I'll probably move most of my treatment to one of them.

Sticking someone with a needle for a blood draw right before they access the port for an infusion is ridiculous. My nurse always sets me up in the infusion room, accesses port for blood draw, leaves the line in while I have my consult and they run labs, then I return to the infusion room.

jaycee49

LoriCA, that is so ridiculous, I can't find (nice) words again. They can't touch it? Can you speak to this radiologist and ask why such sadism is practiced on his patients? I have my port accessed in one building and travel to at least two other buildings for scans, etc. Time to get this fixed. Multiple stabbings are NOT ok. I've watched the techs hook up my port for the injection of stuff. It's like putting a cap on a tube of toothpaste. I certainly don't live in the progressive medical capital of the country so I'm thinking CA should be better. But my son lives in CA. Maybe I need to reconsider. He has told me things. Not all great.

LoriCA

I believe that it's a state law issue. In California the law says it is illegal for anyone to start or even access a central line unless they have attended a board certification class. Apparently this includes EMT personnel, which could be really bad in an emergency situation. I found a few articles on the topic and state laws about who can/cannot administer IV medication through the line are different in every state. California appears to be among the strictest.

Artista928

didn't know it's ca law. I won't bug them anymore.

exbrnxgrl

Yes, Lori is correct! Accessing ports can’t be done unless one is trained and certified. Many believe that any nurse can access a port but that is untrue in CA and other states as well, I imagine. In an effort to help more nurses become port certified, I volunteered to allow a nurse who was being trained for port certification to access my port under the supervision of a port certified nurse. She got it on the second try

Lita57

I only get my port accessed for chemo infusions and dye contrast infusions. The nurses have to go thru quite a procedure, putting on special, thick tan gloves, masking/gowning up, using a special alcohol wand to clean the area, etc. I imagine they HAVE to be trained well to do this. My white cell count is practically non-existent, so I don't mind going to a special suite to have a trained RN do it so I won't get an infection.

That's the last thing I need at this point...L

jaycee49

We were not taking about who can ACCESS a port. We were talking about who can USE a port AFTER it has been accessed. My post made it clear that my onc nurse is certified to access ports, MONTHLY. LoriCA's problem was people being able to use it for imaging after it was accessed by a certified person. The process of using a port after access involves screwing two plastic tubes together like what you do to make a water hose at home longer by connecting two shorter hoses. LoriCA said the CA law restricts who can USE a port after access. My state either doesn't have that part of the law or providers ignore it because it is stupid.

LoriCA

Yes jaycee is correct, apparently California is one of 5 states with super strict laws about who can even touch it. If you're not certified, you're not allowed anywhere near it. One article I read in a California nursing journal said that the law prohibits even an LPN/LVN under direct supervision of a physician from administering medication through an (accessed and in place) line.

mara51506

Thanks LoriCA.

Jaycee, I know it is irritating to notice that someone is posting incorrectly after not fully comprehending what was said. I will let you know I misunderstood but take umbrage about being told to read. My brain has been through surgery, steroids, whole brain radiation and yet more radiation. Some of us may not be at our full capacity and we may miss things along the way. I do take being told to read personal and do find it hurtful. Be mindful that you don't know if everyone posting is at full capacity and it likely is not carelessness that a nuance has not been understood.

I do thank you for clarifying that is was not about who could access the port but who could use after access. I do agree that anyone should be able to insert a line once accessed and is stupid if that is not done.

SandiBeach57

My advice for those who are getting a first time port, please discuss with your MO or IR the best port for you to have. I am not sure why I did not have the Bard slim power port because as a Stage IV patient, it would be with me forever and it (and me) needed to be able to withstand monthly labs, flushes, chemo, MRI, CT Bone contrast.

My Onc infusion RNS do access my non power port prior to my scans (with a 5 ml/sec needle contraption), but just recently found out the 5ml/sec access cannot be attached to a nonpower port for the MRI contrast. This large volume contrast has to go in very fast and it could damage a nonpower port. It seems to be okay to access with the 5ml/sec needle contraption with other scan contrast.

Just because your port can be accessed with a 5ml/sec needle-tubing, doesn't automatic make it a temporary "power port" for contrast.

A side note, when I travel, my MO does not want anyone drawing labs from my port for fear of infection and inexperienced folks.

I am hoping BCO will set up a page to educate all of us about the different ports. Naively, I thought they were all the same.

Now I wish when we discuss ports it would be about the alcoholic kind..

Signing off my rant.

Artista928

like I said, they are afraid of causing infection on someone whose immune system is compromised. And it's not just accessing it and hooking a tube to it but they need to flush it with saline and then heparin. At the infusion center where I go that's not something they have on hand. They don't preorder it. So i wind up sitting for like 15 min until the pharmacy processes the order and gets it for me. Then they start but not before. As for in the hospital as a pt, only 1 floor where I've been is for chemo pts in for other issues. There they have someone certified to do this. I wouldn't be surprised if some rns don't want to possibly be responsible for infection no matter how small of a chance. They may have different protocols for infusion center sanitation. Who knows. Maybe it's where you go. I'll just live with the busted veins and black and blue.

movingsoccermom

On Insurance. As if retiring and moving across country, within 3 months of being diagnosed Stage 4, isn't bad enough, now one insurance company won't accept the oncology referral from the other insurance company because......wait for it......I need to see a primary care doctor first!

What. The west coast isn't certain the east coast knows how to diagnose cancer?!?!?!?! I have dreaded, absolutely dreaded the day we had to go to regular insurance, and that was well before this diagnosis. I have read the misadventures of many on these threads and just knew this would not be smooth sailing. But it surely is super disappointing. Simply unbelievable.

LoriCA

Do you have an HMO movingsoccermom? That's how they work, you need a referral from a PCP in their network before seeing a specialist. Bit silly given you've already been diagnosed, but that's how an HMO is set up. With a PPO you can go directly to any specialist without needing a referral, that's the main reason I have a PPO, to make my life easier.

exbrnxgrl

Unless you belong to an all inclusive HMO, like Kaiser Permanente. No referrals, no pre-approval for anything. My mo orders it, I get it!

jaycee49

Just came from MO. We discussed the port issue. She said that all the denials to use them have to do with the fear of random people accessing or de-accessing them. Ports can be damaged if not accessed properly. She didn't think the de-accessing was such a big deal but my onc nurse disagrees. Maybe when non-certified people use them, they think they can de-access them, too. My onc nurse said she has seen damage done by de-accessing improperly. But USING them once accessed? Most nurses and techs can do that.

SandiBeach57

Still angry that non power port was installed instead of power port back in 2016.

What does this mean? I have to have an IV started for CT MRI contrast scans, which at Stage IV is quarterly. And you know, it just adds more pain to my body.

jaycee49

Did I already say this? Any chance of getting it swapped out? I would seriously pursue it. Talk to MO. The stress of the painful experience is really not good for you.

GG27

Need to vent!! I have been trying to get my implants replaced. I have had pain in my right side for 2+ years and about 6 months on the left side.

My original PS has been ignoring the referral from my GP since May. My GP's MOA calls every week & they say he hasn't looked at it yet.

So we have been trying to get me into see someone else. Most of them recommend seeing original PS. None of them want to deal with a stage IV patient. I am one of the healthiest people around other than the cancer. Yesterday I walked 8kms back to pick up the car. I am in the garden working hard everyday. It's so annoying to have these Dr's look at my chart, see stage IV and figure I'm dying.

I got another call this morning. This PS's ass't told me it would be 5 years. 3 years for a consult & then another 2 years to surgery. It isn't about our health system as my friend just got her exchange done within 3 months. It's because of that one sentence "stage IV" . thank you allowing me this rant. I'm tired of ranting to my DH.

Meow13

GG27, too bad you can't come down to Seattle. Lots of good plastic surgeons. I had to wait 4 months for my DIEP in 2011, because the plastic surgeon did 1 a week and was booked out. Now there are so many more ps that can do the surgery. I wonder how much it would cost to do the implants? Maybe it isn't too expensive.

I just re-read your post, stage 4 shouldn't automatically exclude you. If you are are healthy enough for surgery that is the only thing that should matter. Good grief there are stage 4 people who have been NED for years. Sounds like that plastic surgeon is not up to date maybe you can have your GP find someone else that understands your health.

Beesie

GG27, have you talked to your MO about this? I wonder if an MO might be more successful than a GP at getting your original PS (or any PS) to work with you. If an MO say "this patient is healthy and should be prioritized for this surgery", the PS would be hard pressed to refuse. It's a lot easier to pass on a referral from a GP.

GG27

Yes, My MO has tried many PS's in Vancouver, their answers are always the same, they are too busy, go to your original PS or "oh we don't do any surgeries on stage IV". My original PS is in Nanaimo. I don't know how much it would cost but even if I paid, it doesn't seem like I can in any time soon.

I don't understand how they can just leave someone in pain with obviously failing implants. I am almost to the point of tears it is so frustrating. I think my MLA may be my next step and the head of the Plastic Surgery for BC. I think the problem too is that they are PS & Cosmetic surgeons & there is too much $ in cosmetic surgery. it's easy, easy $$ and no paperwork, no waiting for approvals from the health authority.

mara51506

GG27, that makes no sense to me, we do not do surgeries on stage IV patients. It should be no different between having implants replaced due to medical complications. Stage IV people get surgery all the time related to our cancer and in your case this should not be any different. If it was cosmetic, that would be different, this is a medicalissue from a surgery that arose from your breast cancer. I hope you do have success with your MLA and I would not be shy about contacting a tv station about the people saying no. Sometimes publicizing policies can get the ball rolling as well.

I was told here in Ontario I would have no problem if I wanted a reconstruction later on but that was before I was diagnosed stage 4. Same thing would probably happen to me that you are going through if I wanted a reconstruction (which I don't).

runor

I agree with Mara. Time to go public. Name names and point fingers. But before you do perhaps you should contact your surgeon and just give them the heads up that they are about to be named in your upcoming tv interview. At least give them the chance to unfuck themselves.

sweetp6217

GG27, I hope that something good comes your way; that's just not right of them to do that.

Time for a vent: So, not quite out of the blue, my boss puts me on notice that I'm worse than I've been. Starting right about when chemo began (over two years ago!). My productivity isn't up to top par, words used aren't the best chosen, and memory seems to be at the source of all of this. Can't consistently remember everything. I tried googling to see if there was a magic pill and wouldn't you know? There is one: Modafinil. There has been at least one study that supposedly proves that breast cancer patients had significant improvements in memory, etc. Other meds were mentioned, but this one stands tall above the others.

So, I sent messages to my new MO, my primary and my neurologist. My neurologist wants me to see a psychologist for cognitive tests, I saw my primary that said the same thing and my MO won't get back to me...yet. The PCP wants me to take a month off of work to get to the bottom of it. One problem that I can see is that most doctors aren't going to see you for at least a month. Now, I don't know if that's true of the testing but I'm going to call one of them and leave a message. Apparently, they don't want to answer the phone. Now I will look forward to phone tag. All of this while walking on eggshells at work, praying that I don't slip up. I'm hoping to get a temporary pass while I'm trying to rectify the situation. And, if I turn out to be right, I may be eligible for some sort of accommodation. I could just scream! The timing of this is so crappy since there is practically no one that can cover my shifts even with advanced notice.

Plus, peeps who take time off like that may not have a job to come back to. Arg! Why don't more doctors know about this stuff???

Artista928

I'd talk to the boss about modifying to help you. Do they know you went through chemo? In CA you just need a doc to write you out on state disability which is up to a year. You need to figure things out and not be so stressed, which adds to the problem. GL