Frightened and at sea. Input, please.

[alascerca]

Hello All,
I came here and received such wonderful support when I was initially home after a partial lobectomy (Oct. 2021) and a bit afterward. I feel as though I have taken much more than I have given, and am uneasy about coming back for more, but life has thrown at me many challenges and you have been valuable in my self-advocating with doctors. Not that I have been successful, but that's another story.

Backgound:
2001 bladder, stage III; (dismissed and "run off" as dramatic, for over a year)
2005 colorectal, stage III; and  (dismissed and "run off" as dramatic, for over 18 months)
2021 lung (adenocarcinoma, stage I (self advocated for biopsy after a PET discovered a nodule; partial lobectomy done 19 October 2021 (an aside: My sister died of her lung cancer Dec. 2021).

Kaiser, my health care plan, has not seen it necessary that I have an oncologist. The "go-to" is the icy, indifferent surgeon who did the lobectomy. They let me call oncologist, but even said "I really can't see why you should need an oncologist."

So, I am afloat, without a place to seek caring response. In the last month I did message the surgeon, my only cancer touch-point (just writing it underscores the absurdity of this) about feeling a "very heavy chest (don't know how else to describe it). He said, "It's not time for a scan yet. If you are having these problems in your chest, see me or your primary care provider. " WHAT!? Wasn't that was what I was doing!? I finally got in with an available doctor, whom I do not know, who did an EKG and a chest x-ray, which came out fine. She said to me, "You know, you are doing a lot better than you think you are." This is the story of my life: minimization -- and I am so desperately frustrated today.

I have had COVID and am on the tail end of it. However, it did NOT make me cough, so "excessive coughing that has irritated the lungs" is not the source of this blood. 

Situation now:
As of three days ago. I began to cough up bright red, fresh blood. Not a lot, but alarming the same. If I added it altogether, over the three days, it would probably be about a tablespoon. Still alarming. Today the blood is scant, as though whatever lesion it might be is healing.

I e-mailed my doctor Friday (three days ago), who did not respond. I called the advice nurse to help facilitate my being seen. The nurse called back, and said, "We have an appointment for you to see an available doctor on September 20th. That is over a week away. I balked. She said that I could also go to the ER, and in that way my basic vitals and other tests might be started ASAP. Then they in ER will decide whether or not I need further tests. I detest going to the ER, and am frightened of reinfection with COVID. or worse, some bacterial scourge found in ER's -- MERSA, CDiff, etc..  For several other illnesses, my immune system is almost non-existent. I am thinking that since the bleeding seems to be resolving itself today, I might wait until the 20th, though simply being in a doctor's office (the appointment on the 20th) will not connect me to immediate machinery for a PET or a CT. Alas, I am at sea, and an oncologist would be the one to help me navigate this. My husband and I, absurdly, are doing this navigation, and prioritizing by sheer guessing; we are not physicians. All providers are indifferent to me, and well, I am utterly at sea. Do I go to the ER? Do I wait it out?

If I had my old oncologist, I would be seen and scanned immediately. She took me seriously. Now, it's advice nurses, and office medical assistants I am dealing with; all unknown to me. My PCP didn't even bother to call me; she told the advice nurse to tell me to go to the ER.

The surgeon (again, my "cancer touch stone," sheesh) wants to do a simple CT. I am thinking that with my history, I need a PET. Providers balk at this. It was the only thing that showed the original cancer, which was detected by sheer accident.

Once more, I am being tossed from person to person, all of whom do not know me at all.

Questions:
1. Do you agree that a PET is what I should get? If so, how do I articulately advocate for this? I thought of saying this...is it correct/ good? :
"I would like a PET scan because of my history and high risk health status, because I would like to know that any potential growth at a metabolic level might be caught, and the CT doesn't do that."

2. If they refuse me (which I assume they will do), how do I most successfully push for it?

I am so sorry to be just "bugging" and that this is so long.  You are the only people, though, that came to mind on feeling, desperately,  that I need somebody who knows about these fears and illnesses, and gives a damn, which you have previously shown me quite robustly. I appreciate it so. It feels so terrible to be neglected.

Thank you in advance, and SIGH!
~ Joana

 

[LilyMir]

Hi Joana, though I am new here, I have asked a lot of doctors I know through my work re. best followup imaging modality. Seems the consensus is that contrast CT is standard for lung cancer monitoring. I asked about PET and it does not seem anyone I know gets those unless a CT flags something (or the patients has allergy for CT contrast). They claim that CT is more sensitive (detects smaller nodules) and PET can flag areas that are normal causing false positives. I personally think the two are complementary based on my experience where CT detected my tumour but missed a positive lymph node that was also avid on PET. Mind you, both scan types give you a good dose of radiation. If your insurance does not cover a scan, probably paying for a CT our of pocket is relatively more affordable and a good way to exclude/detect lung cancer. Do you have urgent care clinics that are not ER but offer fast service? Do you have a GP who is more accessible? Hope you get an answer soon. Best of luck!

[LouT]

Joana,

Sorry to hear your history and these new developments.  I agree with Lily's doctor that the CT Scan should produce more results than the PET.  Of course they can be used together, but for the most definitive test I believe the CT would be the one.  I can't answer your question about fighting your insurance company so I'll leave that to those who have actually done that.  I hope your symptoms are just part of your recovery from Covid.

Lou

[Tom Galli]

Joana,

Agree a CT is best tool to check for possible lung metastasis and to evaluate reason for coughing up blood. Do you have a pulmonologist in your care team? Will your Kaiser plan support a pulmonologist? Depending on the physician, this skill set might be better attending to post-treatment screening than a surgeon (my opinion).

Now relax. People I know who've had the latest strains of COVID reported coughing up blood as a symptom, even given the latest strains are not supposed to be hard on the lungs. But, you are 7 months recovering from a lobectomy and COVID plus lobectomy might equal some blood while coughing.

How are you feeling? Have you self-tested to check on your COVID status? Are you monitoring your O2 saturation rate? If so, what is your percentage at rest and when active?

No one on this site ever bugs us (unless advertising a scam cure). We completely understand what you are feeling. That is why we are here. See if you can get coverage by a pulmonologist for future screening and let us know the CT results.

Stay the course.

Tom

[Karen_L]

Patient experiences with Kaiser are so varied; I'm sorry yours have felt so bad-- uncaring and off-putting. You've gotten good advice re: a CT. I just wonder if there's anything you can do about Kaiser-- are you tied to them as insurers? Can you go out-of-network to see an oncologist or pulmonologist? I'd vote for the pulmonologist first. They can rope in an oncologist if necessary. 

Hang in,

Karen