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Navigating through the system

Posts: 120
Joined: Jun 2012

To add insult to injury, just getting the ball rolling on treatment can be a real challenge. Dave learned a week ago yesterday that he has Stage III EC and so far nothing has been done! We saw a local oncologist on Tuesday, she was more than willing to order at PET scan, but since we told her we have plans to be seen by the team at Hopkins on Wed of next week we've held off on doing anything prior to that. Dave talked to Hopkins on Tuesday, and was told they'd get back with him. Here it is Friday morning, and to the best of my knowledge no call yet. I called the nurse practicioner last night and left a msg, saying please get back with us stat as we need to get on this. I haven't talked to Dave yet today (we're not married just dating) and don't want to hound him about this. But I am not happy. As I said in my introductory post I am not a shrinking violet, I will get to the bottom of this, but the esteemed Hopkins may be world renowned and cutting edge in research and treatment BUT you've got to get in the door first! My daughter who is in the medical field has confirmed this... Hopkins sometimes fails in their bedside manner. My goal is to get Dave the best possible treatment, and if Hopkins is going to drag their feet then we'll go across town to the University of Maryland. Has anyone else had difficulties getting treatment started?

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Posts: 120
Joined: Jun 2012

Thank you! Well when I wrote the above this morning I was frustrated, but the squeaky wheel does get the grease, and we are all set up for a PET scan on Tuesday and clinic on Wednesday. It is an all day event. Thank you, though, William for your persistence, and caring! We both talked to humans, and the NP actually called Dave back later to apologize for not getting back with him yesterday. She alleges that she was having trouble getting authorization for the PET from his insurance company, he called and found there were no issues. But this does illustrate for all EC patients how you have to stay on top of things.

We are going to listen to Hopkins on Wednesday, but also get a second or third opinion from surgeons fairly quickly. I know for now Dave just wants to start treating this. I think once we got rolling he'll feel better emotionally, although he is holding up well.

Remember I am not his wife, just his girlfriend! And we live 45 minutes apart! So there will be a few logistical problems here and there with my attending every chemo session but I will be there for every doctors appt. I may not go to the PET on Tuesday because at least when I had mine, I had to sit quietly in a COLD dim room for 45 minutes or so then have the scan for another 30 to 45 minutes, so I'm not so sure that he needs me for that.

And thank you so much for offering to talk to your doctor in PA. Your kindness is so appreciated, and you are a wonderful man to care so much about all of us!

Have a good weekend!


Posts: 665
Joined: May 2010

Glad you are helping Dave get the ball rolling. Hopefully, Dave is eligible for the chemo/radiation and then, surgery.

My husband's oncologist told my 69 year old husband that the treatment is "brutal." In our instance, this was not a misrepresentation.
My husband developed infections, thrush, dehydration, jtube issues; hospitalized twice during treatment and then in the hospital
a month following surgery due to some other issues that this surgeon wanted to make certain were stabilized before he went home.

I went to every PET scan, scope, radiation treatment, and stayed during all hospitalizations. People respond differently to the treatment
regimen. Some with little to no side effects, and some, l like my husband, strong reaction to treatment. As the radiation increased in focus
and intensity, fatigue became a major issue. Eating during treatment became a challenge. He went some months taking nothing by mouth
and we relied on the jtube. It became his best friend. His treatment became an "our" treatment. So, not knowing the depth of your relationship, while you can be his support, it is highly possible if you are not available, that he needs to have a "support" team in addition to your wonderful assistance. You will know more once he is seen at Hopkins.

As an aside, the focus became such an "our" event that when I called our family doctor's office, his phone receptionist who knows us well, got tickled when I called and said, "I need to schedule an appointment for our husband." She told me, while laughing, I already have one husband, and I don't think he'd like me sharing another. Even now, when appointment is scheduled, she will ask how "our" husband is doing.

My husband had to have the Ivor Lewis surgery due to prior chest surgeries. He is now two years post op and his last scan was NED. He is practicing fulltime, enjoying life. He has had many adjustments that he sometimes forget he must make--such as, eating less; timing foods, etc. Small inconveniences for life. We just completed a trip to Europe and plan to go on other adventures as his schedule allows.

As my sister told me years ago, "They are merely men," <3, so you do have to be aggressive on their behalf, ask the questions they don't ask; observe their condition and inform their medical personnel of observations of situations that men just wander through; I kept a daily log. Example: they were giving pill form of medicines prior to jtube and he couldn't swallow the meds. We have family members who are physicians and I asked what to do. They told me most meds have liquid equivalents and to call his treatment team and let them know. One told me which meds could be liquid form. So, I called, explained, etc., and immediately, prescriptions were changed to liquid form, giving him needed relief. I'm joking about the "merely men," but his fatigue and reaction was so severe, he literally said little. It was really scary.

So, get your information so you can plan. Best of luck. BMGky

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