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Moonbeam

Finished last round of chemo and rang the 🔔

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Today was my husband’s last day of chemo. :) what a whirlwind it’s been since Nov. 14th but so happy he rang the 🔔. It’s been filled with lots of twists and turns, as I’m sure everyone’s has...the biggest was my last post with our meeting with a PA instead of his dctr and it being a shi_ show, as I like to call it. We are glad treatment is over and obvi, pray that in 3 weeks his CT scan is clear (and all others moving forward) however, it wasn’t easy coming back and seeing the PA again. To say his choice of words last time was poor...”lung cancer always comes back” it’s been hard to feel good about being switched to a PA in the middle of treatment without our consent. Add to that, not responding to important calls - ringing of ears, folliculitis to name a few - is frustrating. It’s too long to write all that transpired last visit but this one, as awesome as it is, has us both not feeling confident in my husband’s care, if that makes sense. His surgeon- fabulous. The nurses in the infusion part - fabulous. His oncologist seems great but has been MIA the last 2 treatments and the oncologists main nurse and the PA - no bueno. Just frustrating and awkward now. 

Anyhow, back in 3 weeks for CT scan and then every 3 mos afyer thay If all is good. He had a pneumonectomy (stage 2b) NOn small cell poorly differentiated squamous cell carcinoma . 

Thank you as always for all your help and great advice. He’s in the alchemist trial and waiting to see about immunotherapy drugs as well (also at next visit) :)

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Yay!  Glad to hear he's done--hopefully for good!

When he sees the doc again, it might be worth giving the doc some feedback on the PA and nurse (especially the PA).  Sounds like he needs some work on his bedside manner.  

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Moonbeam,

Very happy to learn your husband's treatment is complete and so very sorry to learn of your medical mis-treatment.  There is really no excuse for practitioners to behave in the way you described!

Lung cancer does not always come back.  But mine did return three times after "successful" treatment.  Hopefully future CT scans will confirm his non evidence of disease (NED) but be mentally prepared for a recurrence.  Don't fret about it but be prepared.

Stay the course.

Tom

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LexiCat / Tom Galli - thank you for responding. Interestingly, there are no notes from his visit yesterday in his portal. Never has that happened. 🤷‍♀️ His oncologist is nice. Hard to read and not sure how receptive he would be with what has transpired and tbh seems like the notes from that time are “covering their asses.” PA wrote Mr. so and so seems anxious about his treatment.” No incorrect. he got anxious and emotional bc of your comment.! Yesterday am the PA looked at my husband and said “I see today this is your last infusion. Do you want to do it?” And my husband replied “why wouldn’t I?” PA said “I like to give all my patients that option???” Just baffling - 🤦🏼‍♀️ 

i believe the cancer center needs to know what’s happened. It’s very confusing/troubling  and hard to have confidence moving forward with continuing there...however, not sure what to do tbh. Tom, what would you do?

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Moonbeam,

What would I do when folks providing medical treatment don't treat me well?  I have two approaches.  First, see a clinic or hospital administrator and demand your money for yesterdays consult back.  You are paying for a service (medical services) and you are not satisfied!  So demand the consultation fee be returned to your account. (When they refuse, take your protest to the press!)  Second, find out which state agency is responsible for licensing PAs to practice.  Then, I'd write a strong letter indicating the poor practice methods displayed by the PA.  I'd demand the licensing agency take action to ensure other Florida citizens are not harmed or disturbed by this practitioner. (Do I want my last infusion? Indeed! What nerve!)

While not a doctor, I held a professional engineering license to practice.  The licensing authority had a board of practice that dealt with complaints and performed investigations when complaints were received. Moreover, I had to purchase liability insurance to defend against malpractice.  If complaints were on my file, the insurance company would raise my insurance rates.  I don't know about medical malpractice but I bet there is a similar link.

You are paying for all this mayhem and it sounds like you are dissatisfied.  Get your money back, at least!

Stay the course.

Tom

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Disappointed/dissatisfied tbh since the get go with the oncologist, the oncologists head nurse he was assigned to after his surgery. Don’t forget the first meeting with oncologist he wrote “margins were positive”. Incorrect/splitting hairs?. Pathology report said no because they removed the part of the tumor that grew out of the bronchus into the tissue. Bronchial margin and vascular margin were uninvolved by carcinoma however, the tissue margin extended to the outer surface of the main bronchus. But surgeon removed that. Since that time, first visit good. Second visit good. Third enter PA.  and  note on his portal from nurse stating I was “emotional” and tearful regarding genetic testing, immunotherapy and tinitis and saying I said  they were not moving quickly enough regarding husband’s treatment ??? And PA’s nursing note that “husband is anxious regarding his treatment.” Ugh...you all can see how frustrated I am. I will definitely be writing a letter and speaking to an administrator as it’s just not right. 

Thank you Tom for the advice...have lots to think about moving forward that’s for sure.

xx

Moonbeam

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Hi Moonbeam-

I’m glad this chapter is behind the both of you. I totally understand your experience having had a similar one during my first & only chemo triple combo.  I came from this twisted healthcare industry; I’ve been pretty surprised as my patient experience is incongruent with my professional one.  Healthcare professionals need feedback from us to help drive system improvements. 

There are some wonderful PA’s and some lousy ones.  If there wasn’t a critical shortage of physicians we wouldn’t need mid level practitioners.  

In addition to Tom’s suggestions you can also consider a few of these options-

1. Meet with the patient advocate & refuse to see this PA going forward. You can fire them!  Insist on only seeing the MD.  I’m willing to bet there have been other complaints about the PA

2. Depending on how much energy you want to put into this you can also file a complaint with the insurance company.  When I worked for the insurance companies we took member complaints very seriously.  Some of the bad providers were removed from the network.  That’s the only way medical centers are incentivized to change   When a provider gets kicked off the panel there is a negative revenue impact.  

3.  Under CFR 45 (HIPAA) you are legally entitled to request an amendment to the medical record.     The patient advocate can facilitate this. You wouldn’t want future healthcare providers to be influenced by the documentation of a bad actor.   

Onward! 

Michelle 

 

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Hi, Moonbeam,

We just wanted to check in and see how you're doing. Please post an update when you can.

We are here for you,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Moonbeam, as a retired RN of 33years, I can tell you without a doubt that there is no reason in this world for a doctore or PA to have a bad chairside manner. Actually the PA who saw your husband came across as disrespectful as well as uncaring. Asking you husband if he wants to continued treatment because of anxiety is the wrong way to go. The correct way would be to ask questions about the anxiety, explore the situation. A trivial tidbit here, a PA’s prior education could have been any mundane course of study totally unrelated to the healthcare industry, like English, theater, Business. An NP would be required to have a BSN to progress to NP studies and 1 - 2 years of working in a hospital in an area where he/or she is planning to specialize. Another thing, I don’t believe a PA’s training focuses on the process of: Assessment, Planning, Intervention, Reassessment, whereas this is the focus for an RN/NP. This process is driven in from the first day of nursing school and continues throughout - it leads the student to being able to set a careplan in place and evaluate the effects.. Your PA did none of this, and this is sad and bad. My best guess is had you seen an NP, she would have done the things I explained, asked questions, really explored the situation and she would have come up with a plan that may have included medications for anxiety or other techniques to reduce the anxiety. Complain, complain, complain. Tell the booking staff and oncologist you no longer what to see that PA and tell them why. He failed at compassionate patient care. He is in the job for the paycheck, simply. I fired the first pulmonary doctor I saw for the very same reason. As an RN i would never allow anyone to treat my patients the way your did and I certainly did not allow the Doctor to treat me the way she did, there are consequences for this type of behavior.

Blessings that all is better soon.

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Hoping everything goes well for his CT scan, We all look forward to having NED on our scans.

i will send out prayers that the news is great. Waiting is tough and we have all been there. Tell your hubby to hang tough.

Ron

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