Is my Chain Being Pulled?

[Elaine]

It looks again like my scans are going to be delayed because the clinic billed for Scans in August even though I didn't have scans then.

My Dr said not to worry because there is no clinical indication of spread nor did any of the bloodwork she ordered indicate spread. And I have had not weight loss. Chest Xray from August is same as in Nov.

What bloodwork could she be talking about? Is weight loss really an indication? How about progressive fatigue? She didn't order a CEA unless it was in some other panel.

The only test I could see she ordered remotely connected to LC is LDH. It was normal as was SED rate and blood counts.

I feel like I am getting more runaround. Being sent for Pulmonary Function tests and pain management.

Onc not until December.

Despair is settling in and she is suggesting this (depression) and pain is accounting for the fatigue.

elaine

[kimblanchard]

Elaine can you tell me more about your case? I have seen bits and pieces but what type of lung cancer do you have? What stage is it? What areas has it spread to if it is stage 4? Are you undergoing any kind of treatment and if not, is that your decision or were you told there is no effective treatment?

There aren't any blood tests that are really accurate for lung cancer. CEA is probably the best but often very unrealiable. Weight loss is an ominous sign when it occurs but lack of weight loss is certainly no guarantee of disease stability.

[Elaine]

I am so sorry, I forgot that I stopped posting with my profile when I began to receive copies of my records almost two months ago.

It is a very long story and I have come to find out there are inconstencies in my record.

I will cut out the Dec 2002 thru Feb 2004, but needless to say my DX was missed during that time, even though I was "closely followed" for a severe arrythmia and parathesias--med checks, trips to ER, chest xrays etc., lung function tests, EKGs etc. as late as Dec 2003.

Symptoms of intermittant HPOA (mild arthralgias, severe parathesias and severe burning pain) and mild SOB at DX. Clubbing at least since Dec 2002--nothing but PFTs and Chest Xray upon noticing the clubbing.

Feb 2004 DX--was told Adeno Stage IIIB but could not rule out bone mets completely (onc though did say bone mets unlikely--PCP disagreed--though both had me in grave in 6-9 months. Bone scan showed increased uptake in both shins, forearms, mandible, hips, pelvis.

Pet Scan showed lesion and three possibly four lymph nodes involved consistent with CT.

Sputum cytology showed first inconclusive, then adeno. Another sample taken showed adenosquamous. (I was told adeno).

Surgical opinion inoperable verified by second opinion.

Onc told me that he could give me chemo but I would likely be ill from it "until the day I died"-- "most people go ahead with it, though." This sentence came after about 10 minutes of him talking about stage IV breast cancer--he was extremely confused, fumbling around and then rude-. Told "highly aggressive" form of Lc.

Chest Xray in April showed less than 1mm growth.

Chest Xray in Aug showed 1mm growth.

Chest Xray in November virtually unchanged.

Began to experience some mild fatigue early summer and extreme SOB on exertion.

After August Xray, and not feeling well got to thinking maybe not so aggressive tumor (based on size) and decided to change Drs.

Has been a nightmare with HMO and Drs all along, but in some ways worse with this new Dr. (who you might have read me rant about.)

For example, never have had brain scans and had trouble getting bone scan in August--ironically, they did approve bone and Cat Scan in August, but I was not notified and the clinic did bill for scans I never had.

Can't go back to old Drs, can't change PCP except before the end of month and wouldn't be effective till first of month anyway.

There were many factors that went into my not doing treatment but I never completely ruled it out. One being there are two people on this board who went to same practice and what the Dr said would happen to me, happened to them.

Though once I began to actively seek it, I have gotten nowhere.

[kimblanchard]

Wow, pardon me but that whole thing sounds messed up. I have never had an insurance company or HMO tell me I couldn't order CT scans on a patient with a confirmed diagnosis as often as I wanted and in some patients follow them nearly monthly if we really need to know what the cancer is doing. What you are being told does not sound right at all. And did you say they are following your cancer with chest xrays? That also does not sound right.

We do a lot of blood work most of which tells us zip about what is really going on with the cancer. Typical blood work includes blood counts, liver enzymes, kidney function and calcium. None of these directly say anything about cancer progression. Likewise, LDH and sed rate are in my opinion virtually worthless in lung cancer and I don't follow them. If I check a tumor marker, I will check a CEA which is sometimes helpful, sometimes not.

Weight loss and progressive fatigue are worrisome symptoms but again can be caused by lots of things. To know what cancer is doing, you really need some good pictures.

[Elaine]

The only thing I can figure out is that since I wasn't doing treatment, I had trouble getting scans???!!!

I spent a half hour on the phone with the "medical director" of the place, who is not a Dr and seemed more like a person who does damage control to try to find out who billed for a Cat Scan etc. And to find out why her Drs. weren't ordering needed tests.

This was after a half hour with the HMO who said they never said I couldn't have one. My case manager is no longer with them ( --(I wonder why!) but my records showed I was in hospice care--NO WAY! Though they have pushed that since day #1. Oddly enough the caseworker was "with them" last week. The person I talked with today was the only decent person I have ever spoken to there and seemed as appalled as I am at what is going on.

Thurs when I called radiology to make sure that I was going to get the scan Friday, they told me the referral had not gone through and I would have to sign a paper saying I would be responsible for the bill.

They are all supposed to get back to me tomorrow. I have just about had it!

elaine