Eternal follow ups, but where?

[SDianneB]

I pretty much knew when I first heard my diagnosis that I was in for a "lifetime" of scans and tests and doctor visits (whatever "lifetime" means now!), but it's now becoming reality.

I'm about 7 months past diagnosis, done with first line treatments, and NED. Can't ask for more than that, given the circumstances, except for the new goal of keeping the monster in the closet and OUT of my body.

Last week, I saw the Oncologist and saw the Pulmonologist yesterday. The Onc. wants me back in 6 wks, and will do a chest x-ray. I asked the Pulmonologist if I'm supposed to see 3 doctors every 3 months from now on, and if so, why? What he says will happen (and he's been right every time so far) is that I'll have the chest x-ray, see the Onc., they'll see the radiation damage and think it's pneumonia, then order a CT scan just to "make sure." (Remember too that this Pulmonologist actually LOOKS AT the scans -- I bring him copies on a CD after I have them. The Onc. just looks at the report.) That sounds about right, so he says that if I don't have another CT scan by April or so, that he'll order it, and he'll call the Onc. and smooth it all out with her.

He says that I should wait until about June/July which will put me about a year out from diagnosis, see how things look then, and if all is stable, I can just follow with my PCP and Pulmonologist. He will also smooth this all out with the Oncologist.

My thoughts were that if I don't have active cancer, why see an Oncologist so often, since I have a great Pulmonologist who has seemed to be more on top of this all along anyway? Plus, when I go to the Onc. office, I wait a LONG time, so it takes a LOT out of my day. When I finally get back there, they do my lab work, and I sit in an exam room for another LONG time (making them leave the door open now so they can SEE there is a person in there and not just a closed door). Then, a nurse practitioner comes in, asks me questions off a typed list, listens to my chest, and leaves. I wait some more. The Onc. pokes her head in, says hello, things look good, see you in 6 weeks, then outta there. Not even 2 actual minutes (yes I timed it this last time). But, of course, the office visit costs the same whether I see a doctor or a nurse practitioner. (Not that there's anything wrong with nurse practitioners either, but having lung cancer just makes me think I should be seeing doctors, especially if that's what I'm paying for.) She is a truly nice person, great doctor, but is a breast cancer specialist, doesn't seem to really understand lung cancer protocols, and is SO busy.

I feel like I get the best care from the Pulmonologist, so I'll probably stick with him like glue. I also follow with my PCP because he's a friend, and is good to tell me when he thinks I'm not thinking something through adequately, and helps me through things like that. (He told me yesterday that I'm the kind of patient they like -- was feeling bad when he first saw me, and all I've done since then is to keep getting better!)

So, all is still well for now, and I begin the first year of frequent follow ups, followed probably by another year of just about the same! Oh joy! (NOT!)

I would bet a lot of people (most?) follow with an Oncologist, but how many have three docs -- PCP, Pulmonologist, AND Oncologist that you follow with frequently? It just seems like WAY too much to me, but some of you have been down this road before me, and I'm sure there are reasons I'm not even aware of that may have some bearing on this.

Di

[Justakid]

Di-

You go see whoever you are most comfortable with and feel safest with. When I flipped out on my PCP and told him that my Oncologist wasn't going to watch me the way I felt I should and that I wanted him to do it....he said he would but he didn;t feel he could give me the best care and he sent me to a new Oncologist. My point, go where you are most comfortable. You are done with treatment, if there is a problem in the future you can always get another oncologist if you don't want to face the old one.

[Hebbie]

For the past two years, I have been seeing my surgeon every 6 months, and my medical oncoligist and radiation oncologist every 3 months (with CT Scans). Somewhere along the way, I picked up a pulminologist (due to radiation fibrosis damage) and once that initial problem was dealt with (with steroids), I usually check in with him every 6 months as well.

Just this past visit w/ my surgeon, he told me I no longer need to see him, since I am regulary seen by my two oncologist.

The one doc I do NOT see regulary is my Primary Care Physician. As it was put by my oncologist -- I have probably "outgrown" him, so to speak, for most things. Even a few weeks ago, when I had a cold that seemed to be going into my chest, I called my onc. nurse practicitioner to ask her what she thought, and she called in an antibiotic for me. I've got so much lung damage from radiation -- what is the PCP going to do? If he were to do an x-ray, what would he really be able to tell me?

I am concerned though, that your Onc. doesn't seem to spend any time with you. I do agree that I spent a LOT of time in the waiting room, and I do meet w/ my nurse practitioner first, but then my medical onc. joins us and spends anywhere from 10 to 30 minutes with me, and lingers to make sure I have no further questions. He asks how things are going in my life, and get's "personal"......which I like -- because then I know I am no longer just a CHART, but an actual HUMAN BEING in his eyes.

And you deserve the same treatment!

[Snowflake]

Di,

After all treatment, I was followed by my PCP, thoracic surgeon, oncologist and radiation oncologist. My thought? What the heck am I seeing the radiation oncologist for, he goes by the scans my oncologist orders! Nothing new, in fact, sometimes he was seeing me two months AFTER a scan, just before I went in for a new one.

I am no longer followed by the radiation oncologist. I asked my oncologist about it and he told me that I didn't need to be followed by him. A year out from surgery, I no longer saw the thoracic surgeon. He said he would follow me through my oncologist.

Down to TWO! Scans are quarterly now, next set in March. May end up on the six month plan at that time.

My oncologist does not specialize in lung cancer. He is, however, really up on his "stuff". I figure that between him and my PCP, I'm in good hands.

...add to that a neuropsychologist and an endocrinologist and suddenly I'm my insurance's worst nightmare...

[kimmek]

Hi DI...

Funny you brought this subject up, as Mom and I just this very morning had the same conversation. Right now she is seeing 4 docs and looking for a new pcp. We hopefully should be able to do away with one next week, The orthopedic doc, since thats really about her back and has been sucessfuly dealt with.

I love her Onc, she is the best. It seems to that whenever Mom has any problem she kinda takes over. But we stillsee the pulmonoligist, but after we go back for a check up in 2 weeks, he will be 3months im sure. After reading Hebbie's post about her pcp, im wondering now if we really need to be looking for a new one. We do have a family doc that mom can always see and get in that very day. (small town Doc). Mom goes the 28th of this month for her 3 month scan and I guesss after that provided everything is still ned, it will be 3 months. Mom will go in once a month and have lab done, as to monitor her coumadin. This was being done by her cardioligist before and now the onc kinda took it over.

But yes will the dr appts ever end? I feel like they are mine too as I have never NOT been to an appt or scan or anything with my mom. She has never been anywhere alone yet, and I dont intend to change that. This is just life now i guess, really weird for mom thought because she was one of those who never went to the doc, never was sick really. The last time she was in the hospital was 40 yrs ago when my little brother was born. But she is handling all really well, and doing so much better than even 3 weeks ago.

Anyway, just my input..........................Kim

[SDianneB]

Wow. Nothing like diversity, huh! These are great responses. Just about the time I feel like the lone ranger, here you all come to let me know I'm not!

I probably feel so tied to the pulmonologist I have because my PCP was out of town (Memorial Day) when I got sick and wound up in the hospital, and the ER doc got me hooked up with him. He was amazing. Put 2 and 2 together, came up with 4, and we moved right on with it. I was admitted on Monday evening, Memorial Day, left there Friday morning of that same week, and before I left had scans and biopsies under my belt, first round of chemo underway, and was off to the races.

Ever since, he has been very straightforward with me, and everything he has told me has been right on accurate. Always. When he doesn't know, he says he doesn't know.

The last day of PCI, the Rad. Onc. "signed off," and said if I ever needed them to just call. He asked that I come back and visit, as they like all their patients to come and let them know how they are doing. They have an annual reunion of survivors too, and I'll be going to that.

It just sounds like a LOT to me to have to see so many docs forever, but if that's how it should be, then that's the way it will be. Sometimes, I get the feeling that they smell my insurance coming. But the truth is that when they've treated you for something so serious, it is standard to have a period of follow-up. They wouldn't be doing their jobs if they didn't do that, IMO.

I do know though that if I'm not actually seeing an Oncologist when I go in there, I won't be going back every 6 weeks. I can have chest x-rays at the Pulmonologist's office, he'll read them on the spot, and have the same lab work, etc., and all for less money. He, as always, will be right on top of anything suspicious looking, and can refer me right back to an Oncologist if I need one. A nurse practitioner is a great thing to have, but every time I go, I see a different one who says, "I'm Dr. X's nurse practitioner." Either she has a lot of them, or they have a big turnover! I'm just not willing to put my care in the hands of someone other than a physician, especially during this really critical first year after treatment period.

Oh, the pulmonologist gave me Lasix and potassium today to help with my "still trying to get to menopause" fluid problem. So, guess what I'll be doing all weekend? Aaarrrggghh!!!

Di

[Cindy RN]

I have every 2-3 mos check ups, labs, CT scans etc with my oncologist. If i need something simple I cal the FP Dr. If I think it may have something to do with the ca I call the oncologist. The pulmonollogist and radiologist are in the past for now-no check ups with them or the surgeon.

Cindy