Have no expectations, and you're seldom disappointed.

[SDianneB]

That's my new motto for the Oncology practice where I've been going - aka Keystone Kops.

So, I go in this a.m. to get results of a) follow-up ultrasound to thyroid (looks good, 2 nodules exactly the same as the 1st ultrasound, and same dimensions as when first seen in the scan) CT of chest/abdomen and pelvis I had last week.

Do I get results? No way. I get what I usually get from those people -- equivocation.

The wheeze I've had from radiation and the scarring I've had on my right, also from radiation, show up on a chest x-ray, and the CT scan. So, the says it's a "fuzzy" place, could be scarring, could be pneumonia, except I don't have any symtoms of pneumonia, and my lungs sound good otherwise, and it's really hard to tell from chest x-ray, and the scan just shows a little restricted place on that side that is probably the scarring, yada, yada, yada.

So, do, is there CANCER THERE? Hello?? Well, it's a fuzzy place on the right, could be scarring, (rerun tape from above). She goes out to call the Rad. Onc. to get his take on this, and while she's gone, I'm preparing a list of questions to ask and pin her down on, but it finally occurs to me that I have my expectations set WAY too high for these people. They don't ever see the actual x-rays and scans, they just read the reports. On Nov. 11th, I see one of 2 docs who has, from the beginning, been straight up with me, and 100% accurate each and every time -- the Pulmonologist. He actually looks at the films from the scans (gasp - what a concept!) and then tells me what it is. He is, after all, the lung expert.

What really frosted me this morning is that the Rad. Onc. is the one who sent me back to her and had to call them several times before they got the message that there is a window of time in which the PCI will do me some good. I see her this morning, expecting to be referred back to him, and instead, she calls him and tells him that she wants to do another PET scan in late November before we consider the PCI, and he goes along with it! One more time -- they tell me one thing, and then I hear something completely different from them when they talk to each other or when I see another one. I went ahead and made the late November appointments - one PET scan, and appt. to see the Oncologist again, this time insisting on (and getting) it done where I want it to be done, which is not their imaging center. They'll have to do without that money this time, so sorry.

Depending on what the Pulmonologist thinks on Nov. 11th, I'm thinking it's time to just move on and leave those people to their befuddlement. I think they are more into their research and breast cancer anyway, and would probably just as soon have me go elsewhere anyway, except the insurance $$ they get from seeing me is really, really tempting.

So, more waiting and more scans. I guess if there is any good news it is that there is no cancer, or at least no obvious cancer, in my chest, and what they are haggling over is probably just what the Pulmonologist said it was all along -- the scarring from radiation. (Also interesting to note that the only treatment the Oncologist has offered me for the wheeze so far is to send me to a GI specialist and have them put a tube down my throat and expand it. No thanks.)

My Thanksgiving this year will be about being thankful to still have my life, assuming I still do !! And, thankful that there are choices in this world!

Di

[Nancy B]

Sure sounds like you are getting the run-around with these people. I don't know about a window of time to do a PCI - what is it? I started PCI 5 and ahalf weeks after chemo ended. My oncologist said that the PCI is definitely the way to go. He said so many times they get things cleared up in the lungs and six months later - boom, it's in the brain. I told my onc that I want to really follow up closely on everything and he said that my diligence has gotten us this far (I insist on scans, tests, etc. sometimes sooner than they would like, but we discovered this latest sclc very early).

Good luck to you Di - hope you can get your docs to be more pro-active about your care. Sounds like you need to take a huge dose of patience before you enter their doors.

Hugs,

Nancy B

[Remembering Dave]

About the window of time - will November be OK with the window of time? If not, I think you need to muscle yourself an appt. with someone else and get their opinion on what to do next. Someone else being another radiation oncologist - to discuss the PCI, etc.

I don't see the need for more scans before doing the PCI. Your situation sounds exactly like Dave's and they proceeded with the PCI after his chemo and chest radiation. He's had "a little something" in his lungs and although no one could say for sure what it is, it was assumed to be scar tissue and they moved on to PCI.

You must be terribly, terribly frustrated.

Karen C.

[Don Wood]

It seems to me you have had enough patience with these people. I would hunt for a better team who has your interests better than this group has shown. Don

[SDianneB]

Ok, how soon can all you people move here and become my neighbors in real life? Ha!

I was frustrated and a bit angry when I left there, mostly because I felt like I had to orchestrate things ONE MORE TIME - aarrrgghh! Now, a strange sense of calm has taken over, and when I can go home and think this all over without distractions, I think I'll have it back under control. I'm convinced that the Pulmonologist is going to be the most help, as he always is. I think my mistake early on was in not consulting him more than I did, but I will remedy that with the Nov. 11th visit. I know from the past that he will intervene for me with the Oncologists, as he is the one who (literally) saved me from the first Oncologist who was going to withhold radiation treatment because of his "hunch" that my adrenal glands were involved. (To this day, they have shown to be fine -- not even enlarged any more now that the other stuff is cleared up, and just as the Pulmonologist predicted. Go figure.)

My mother called, and I was still so angry I didn't even want to talk to her right then, so will call her later and just be calm about this all. Whew.

Thanks to you all -- your words of support and understanding are SO helpful!

Di

[karen335]

Hi Dianne,

Your onc's and Pulms sound like mine. My onc never looks at scans(she admitted she doesn't know how to read them) and the Pulm doc never has me bring any scans to him. Everything is by report and there usually are (85% of the time) numerous techs who read my scans. Each reads a scan differently. My Onc's specialty is breast cancer too. They want me to do a testimony for their website on how I was cured by them. HAHA!!! My healer is my Lord Jesus Christ, which I have told them and if I put that in my testimony, they wouldn't be posting my testimony on their website. I give Him ALL the glory, not my doctor....

I hope I haven't offended anyone, But it is true.

God Bless and prayers,

Karen

[karen335]

I also had to have a tumor removed surgically and my Onc, said to me, why didn't you have my office take care of all of the scheduling for you. I said beceuse no one in your office can see daylight aor knows what they are doing including you. I could reallly tell alll of you some stories about my onc and, pulm doc and rad onc., but I don't want to take up your time or bore everyone. Here's a good one, my onc. preached to my hubby and I for 30 minutes about how I should switch my insurance from an HMO to a PPO. She had NEVER taken the time to talk to me about this disease or treatments for thie period of time. It's in and out, because she doesn't have any answers, nor does she try and get you answers. I now have PPO insurance, which means I can now go ANYWHERE and she is SOL.I was referred to City of Hope for Stereotactic radiation, I refused to go to the Rad Onc who did it on my chest. His equipment was about 40 years old. No lie...

God Bless all,

Karen

[Addie]

Dammitall anyway, Dianne.....you have had the worst luck with this group of docs.

You know what I'd do? I'd get the last chest xray and scan and deliver it to your pulmonologist. I'd try to get that Nov. 11th appointment moved up...but if that isn't possible, I'd at least ask the pulmonary doc to READ the xray and scan and call you asap with his opinion. That way...you don't have to wait any longer to at least get the opinion of someone you respect!

I still think you're well within a reasonable window for PCI. By the time I start PCI on Monday, it will be nearly 7 weeks since my last chemo. I think most docs prefer that you get at least a month or so after other tx to sort of regroup, before starting PCI anyway.

Still.....you want to have all your ducks in a row....so I'd try to get in to see your pulm. doc sooner, if possible.

Dunno what it is with those oncs and they're bloomin' scans, PETs, etc. I mean sheesh, at some point you gotta act on what the scans show, eh?

Get a little pushy, girl. I know you can do it ...and sometimes you gotta just take the bull by the horns, you know?

Let us know what happens...but I wouldn't wait any longer to get something moving in the right direction. I think I'd also put in a call to the rad. onc and ask him why - all of a sudden - he's going along with the onc's delays? That seems out of character too, doesn't it? Hasn't your rad. onc been pretty up front with you up to now?

[cindi o'h]

Boy, I tell you, it sure helps to be smart and proactive with your care...you are on the right track...keep at 'em. Sqeaky wheel gets the grease. I am sure glad that I am considered disabled... it is a full time job, on the phone setting app'ts, calling ahead for radiographs to be picked up, moved from one specialist to the next. One opinion, a slight opinion, an abivilent opinion.. pharmacy calls, waiting for refills, picking up pharmaceuticals,....

Can you imagine if you were all alone and doing all of this while you were sick? And inexperienced.? I jump in there and Engage" when there is anyway to do it . I know that I have PITA written in my charts.... but I don't care. I am a living PITA. And that is what counts...PITA=pain in the neck.

Don't let them get you down...you are doing a good job of learning how to move around the system and who will treat you right and who won't. It is a learn as you go. Hopefully, you can change things to your advantage..

Thanks for posting. I am glad that I wasn't isolated in my experience..

They say, Fight! This is part of the fight!

Cindi o'h

[J.C.]

Dianne,

My motto is *Expect the worst and get no surprises, except

good ones*

All I can say, is the very old way was better for appointments

but not as good for treatments.

Keep asking for answers, they may volunteer some just to get

you out.

Good luck.

J.C.

[SDianneB]

Well, at least I'm in good -- no, great -- company with people who share my experiences, albeit many aren't the kind we want.

My outlook is much better this morning, as I knew it would be, and after I read the riot act to the guy who left my a/c hanging over a month ago without coming back to see that it would actually WORK, and now these warm and damp days have made my house so danged damp, I'm thinking it may be part of why my wheeze is still hanging around.

Anyway, if I do nothing, here's the scenario I believe will happen: I go in late Nov. for the PET scan as they want. As I've been told repeatedly, it will be "useless" -- everything inside me will "light up," and they won't know stem from stern, so they will, of course, want to run me through the gamut of invasive procedures such as biopsies, more bronchoscopy, or whatever they have available to "rule out" cancer where the PET scan shows uptake which will be virtually everywhere so soon after chest radiation. No thanks.

Addie -- I think I'll call the Pulmonologist today like you suggested. You and I are of the same mind here. At first I was just going to wait, but if I could get that moved up to next week at least, it would give me one more week of time. At the very least, I'm going to call land talk to his nurse who is wonderful, and let her know what's going on. He may very well see the scans and make some phone calls and get things happening as he's done for me already several times in the past. (He's the one who shook up the first oncologist to even order the chest radiation, because the first one was still stuck on my adrenal glands being involved. They weren't involved then, haven't been since, and still aren't. So much for his unsubstantiated "hunch.") At any rate, I may ask for a referral to a local doc who is a lung cancer specialist and if that works out, will just leave the other bunch to their breast cancer patients.

It's a shame, because I was really liking this Oncologist -- as a person. She is struly a nice person, quite professional, etc., but I just think their major focus is on their research and breast cancer, and I don't have breast cancer, so they aren't going to do me much good.

I thought about calling the Rad. Onc. too, as they have been straight with me, but their bottom line is that they will stick up for each other -- no matter what. Not unusual for doctors. So, I think I need to stick with the Pulmonologist first, and if I go to the other oncologist (the lung cancer specialist), I'd probably have any further treatment elsewhere anyway. If that happens, I WILL be writing them a letter telling them exactly why I won't be coming back, and why I will be recommending to others I know that they go elsewhere for treatment if they have lung cancer. (Incidentally, I did fax a copy of that PCI article to the Oncologist yesterday, with a cover note telling her why I am perplexed that they all think now that I need a PET scan, when not so long ago I was told more than once that it would be "useless" this early. I asked what has changed to make it now useful, and why she thought it would give them answers that this CT scan didn't, when the PET would be full of false positive results? I doubt I'll hear back, but I felt I had to do it!)

So, back to work and life and all that wonderful stuff. Thank you ALL yet one more time for your words of encouragement and support. You're da bomb!

Di

[SDianneB]

I talked to the nurse at the Pulmonologist's office, and we've bumped my appointment up to next Wednesday. He does have my scan on disc, and she put it on his desk for him to look at before I get there. When I called and left her my message today, she told him what I said, and he told her to "call her and get her in here as soon as we can -- she needs to be taken care of!" Whatta guy. She repeated what they've told me over and over again -- do not ever hesitate to call when I need their help.

So, he will know what he's seeing on the scan and what to do about it, if anything, if anyone will.

I also called the office of the lung cancer specialist, and they said he would see new patients with or without a referral, without question.

Life looks much better today than it did yesterday!

Di

[Addie]

Life looks much better today than it did yesterday!

Well, yes indeed!!

I'm so happy you did this....aren't you? Just glad to know you'll get some answers sooner....and that you have such a great doc on your side. My PCP is like this. Tells me to call him at home, if I need to!! (Well, he's a neighbor too...did I mention that? )

I try not to take advantage of his kind offer...but then again, figure he wouldn't MAKE it unless he meant it. I'm sure your pulmonologist is the same.

Just real happy you've got him on your team. Keep us posted, now that you're on a faster track.