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I am going whacko again


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Well, I guess my numbness has worn off, which probably isn't a good thing, since it has been replaced with anxiety.

I am feelng tremendously deficient as a person, right now. Here I am almost 50 and I can't seem to handle the stress of this like so many of you seem to.

I had a CT scan last Tues, and I have been somewhat anxious about it. It was done to monitor lymph nodes. These nodes should have been monitored months ago, which is why I changed pulmos.

I had a appointment with my counselor today, so I thought I would call to get my results before my appointment with her, so I would have some kind of support if I needed it.

I called my PCP's office (she is still on maternity leave) and they said they could not give me the results, only the Dr who ordered the tests. So I called that office.

The nurse said that she would not discuss the results with me, and said the Dr will go over them with you next Tues at your appointment.

I was both angry and scared, like the kind of scared when your legs go weak and the hair on your arms stands up.

I want to be "prepared" before this visit. I don't want to walk in not knowing what I will be facing and without having done some legwork. It is the way I NEED to do things.

I was just stunned at her answer. Once again, I felt slapped around.

I know many of you do not get your results until your appointments, but I just don't think I can do it. Especially, seeing the Dr is pretty much a sarcastic *ss, as I have written about previously.

Any suggestions?? What would you do?

My husband feels I am over-reacting.

Also, I thought we weren't going, but now it looks like we are going to a family reunion (not my family) and have to leave tomorrow.


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I so feel your pain. Especially the part where you describe the kind of scared you felt, where the legs go weak and the hair on your arms stands up. How well I know that feeling...

I know that you have not had the best results with your doctors, and you know I identify with that also. I'm not sure how you can get the results the way you need to, your doctor doesn't sound the type who will actually listen to your emotional needs.

When I go for my normal tests every 3 months, I have them on Monday with my Oncologist appointment scheduled on Tuesday. That is the way I need to do it for my stress level, I need to find out quickly. Maybe you can try something like that, making an appt for a follow up right after the test (after all, I doubt any doctor waits an entire damn week to receive a test result). It still doesn't allow you to walk in "prepared" but at least you don't have the huge gap of waiting. This works for ME, I can sort of categorize it in my mind, test Monday, doctor Tuesday and it takes away the stress. You would just need to coordinate the appointments ahead of time, that should be something they can do for you with little effort on their part.

Anyway, I feel for you Elaine. And don't think that your unique on the not handling stress well. You have plenty of company and I'm ahead of you. I turn into a total lunatic (and I DO mean lunatic :shock: ) when I need to wait for results of anything..

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I am sorry you're having a bad time. I read your post and frankly its the family reunion that would kill me :shock: . About the test results..most nurses can't or won't discuss them with you but you could ask to have the report faxed to you and do your best to interpret it before you appointment.

Hang in there Elaine...I'd say don't go whacko on us..but whacko is what I do best. :wink: Whackos R Us should be the name of Cindi's Pub.

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I would suggest calling the dr. back and requesting a return phone call ASAP. IMO, you shouldn't have to wait til next week when they have the results right in front of them. Charlie's doctors have always been willing to call with the results.

I say "go get 'em." What's the worst thing that can happen? He doesn't call or they won't give him the message. At least you will have tried. I will be praying for him to call you back tomorrow! Hope I'm not being too pushy. If you don't have the energy yourself, can you get your husband to call?

Take care and praying for you.

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Dear Elaine,

I, too, feel your anxiety. I agree with Ry. I would call and insist they fax you the report.

Tell them you want to see the report ahead of time so that you can ask questions. If she gets difficult, try (politely) demanding they send it to you because it's your body, your report and you paid for it.

If you don't have a fax machine, send me a PM and I will give you my work fax number and they can fax it to me. I can then scan it and email it to you, or I can even call you and read it to you if you want. I will be there until 5:00 p.m. tomorrow (Indiana time).

Try deep breathing and relaxing your shoulders - it helps with the tension.

Love and hugs,


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The facility where the scan was done has to give you a copy of the report, and for that matter a copy of the scan film or disc, when you request it. You may need to request it in writing, and you may need to pay for the copies, but they cannot deny you the copy. They may "require" a few days notice to "prepare" the report/copies, so I always order the copies at the time the scan is being done. They can only get away with this kind of BS if you let them do so.

When I sense resistance I FAX my request for the report directly to the facility where the scan/test/procedure was performed. Hard to deny they received a request for copies that way.

Go to the facility where the scan was done, go to the medical records department, tell them you are there to obtain a copy of the report for the CT scan you had done for a specific date. If they refuse to provide this then ask to speak to the supervisor, and or department manager. If that doesn't work then park yourself in the Hospital Director's office and tell them you aren't leaving until you have a report in your hands. Remind them that under FEDERAL LAW you have the right to obtain copies of ALL of your medical records, including scan reports. Period.

This kind of thing just ticks me off.

You aren't crazy. What you are putting up with certainly is. Those people should be ashamed.

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Elaine :

I don't understand why securing a copy of your rad report is a problem unless the ordering physician has a reputation at the imaging facility for insisting that patients not see reports until he does. Sometimes a medical records dept. will withhold release of a new report based on this reasoning but that's why you don't go thru medical records to make such a request. Go to, or communicate directly with, the radiology dept. If necessary state that you have multiple upcoming doctor appts. scheduled and you need a personal copy of the report in hand. I've never had a problem getting my wife's reports ( radiology and blood ) as soon as available. Same day on blood tests and within ~ 48 hours on radiology. Sometimes I'll even request a draft copy of a rad report if I'm overly anxious and don't want to wait for a finalized report. I either have the report faxed to me or I pick it up at the rad dept.

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I have the orders for my tests in my hand with the oncologists name as ordering physician prior to going in for the scans. I take a pen and write in my PCP in the box that says "Copy to". I have my appointment with the oncologist a week after my tests, and sometimes, that's just too long to wait.

My PCP told me that if I put her name in that little box and called her a couple of days after the tests, she'd read the results to me - well, it's her nurse that does the reading... Everytime the nurse calls, I get the "We were not the ordering physician on this, and normally, we prefer the ordering physician to go over the results before we discuss them with the patient"...I believe this is policy, this little script she goes through, because AFTER she reads the little script, she reads the results to me, on the phone.

Try to make a counseling appointment before and after scan/appointment time. You can discuss fears beforehand and results/actions afterward.

Good luck to you - and listen to Fay, that woman has mucho knowledge on ALL the crap you CAN do if you need to.

Take care,


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Dear Elaine,

I would be the same way waiting for results they have in front of them that have nothing to do with them and EVERYTHING to do with you!! Get TOUGH! I agree this is just BS and I know it is you're right to get them pronto.

You are in my prayers.

God bless you,


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Isn't there a Comprehensive Cancer Center near you? Do you still live in Kansas? I don't understand WHY you continue to go to these quacks? Your an intelligent, educated woman, why are you still on the road to NO WHERE with these doctor's you continue to see?

You have a (rare) type of lung cancer, and this is the treatment you continue to recieve? I have to say this, ARE YOU KIDDING ME??? I hope I can make you mad enough to go do something to help youself with your situation. Get MAD go find a REAL DOCTOR, don't you honestly think this has gone on for you long enough? I would be so fed up I would RUN to find another doctor rather then go through what you go through over and over and over and over and over.(get the pattern)?

You deserve to be cared for better then you have been. I can't believe you haven't considered turning these people in and making a formal complaint.

Good luck, and I sure hope you'll get mad enough to do something. Now days, you should be able to find someone or a medical center that is much more competent then what your dealing with.

I have to add this, and that is, on some occations my doctor's nurses have given me my results. They just read what is on the reports.

Fay has put it best, LISTEN to her! It's for your own good!

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FWIW...my onc's office won't release a copy of my scan results until AFTER the doc has seen it. But the radiology dept at our local hospital gets a preliminary report out for any oncology patients PRONTO!!

I had my last CT on a Tuesday afternoon at 2:30. My onc had a copy of the prelim. report by that evening! Since he was leaving town on Wed. morning...he left a note for his receptionist to call me to relay the results. I got the call from the receptionist by about 11: a.m. Wednesday morning...not even 24 hours after the scan!!

It sounds like your onc and his staff are just not as understanding about the angst created with waiting for results...and the radiology dept. might not be any more sympathetic. But I'd either be making some major noise about how it shouldn't TAKE a week for you to hear results...or I'd be finding a new onc. There is no reason why you should have to wait for your appointment WHEN THE RESULTS ARE KNOWN LONG BEFORE THAT!!

You aren't over reacting...you are reacting normally to having a condition that is ANGST-PRODUCING ANYWAY....nevermind when you're waiting on test results that could be good...or could be bad! I mean, that's the reality of this disease....we're never quite sure which direction things might go.

I tend to stay pretty positive, as you know...but this last scan had me a bit more worried....simply because having the d*mn cancer in my liver and pancreas ain't a cake walk! It's a major help to me that I don't have to wait a week for results. I had the prelim. report immediately....and only had to wait the week to see my onc and get more specific results, when he returned from vacation. (Even oncs deserve some time off...eh? :wink: )

In the event that I cannot contact anyone in my onc's office (ie: if I have to wait for someone to call me back at the end of the day...because they are all too busy to call)....then I just call my primary doc's office. I always have everything copied to him...and HIS nurse is a breast cancer survivor, very sympathetic and she will READ ME the results of a scan or test over the phone.

I'm lucky (and I'd change docs if I weren't)...that I've got doctors who don't play power games with me regarding information about MY OWN HEALTH or body! You need to find doctors who will treat you the same way.

I'm long past putting up with anyone who thinks they're gonna lord their "power" over me when it comes to my health and any info relating to it...and that includes snooty little nurses who think they can tell me what to do, too! :? The last time I saw my gyn, I refused to have the physical exam...because there is nothing he can do about anything anyway, as long as I'm in tx for the cancer. His nurse was NOT happy with me...that I was THERE and wasn't going to disrobe for a physical examination. She said I was "overdue" for it.

I told her..."Listen...I had my mammogram, you just took my b.p., got an updated sheet on my meds and the doctor and I will talk and I will update him on my status re: the cancer...but there is NO NEED FOR AN EXAM because my cancer tx takes precedence over the fact of needing my ovaries out! Since nothing can or will be done about that....there is simply no need to go thru a physical exam at this point!"

She wasn't happy. And you know what? It's HER d*mn problem.....NOT MINE! She can put HER feet in the stirrups....mine were staying on the floor, thankyouverymuch! :roll:

You're about to turn 50, am I right, E? That should do it for you, sweetie. I turned 50, got a HUGE mental infusion of confidence AND got in touch with my Inner Bi*ch.....and am a new person! :D I take on imperious nurses AND doctors with dirty windowsills! (That last is another long story about a gyn oncologist who left me half naked in his exam room for too long...and I got up and walked out. He never billed me, much to his credit...cuz I'd not have paid the bill!! Oh, and his windowsill in the exam room WAS filthy and dusty which also didn't endear me to the guy!)

Turning 50 was an epiphany in a lot of ways...not the least of which has been that I'm much less likely to just "make nice" when some medical person is jerking my chain or exerting themselves in some power struggle. My new motto? DON'T MESS WITH THE CANCER LADY!! :wink:

Make a few demands, Elaine...or find better docs.

Better still.........DO BOTH!


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I think we should have shirts made with this on them in HUGE letters! I love it.

You? Deficient? Ok, so who are you, and what have you done with our Elaine? Snap out of it!

I'm with Addie -- ask nicely, then request more forcefully, then start demanding if you have to, but this information is YOURS to have. I'm in a battle with an egghead at the CT/PET imaging center right now -- have tried 4 times to pick up a copy of a CD of my last scan that he hasn't made, keeps making up excuses every time I stop by, etc. Finally, I asked the receptionist to just mail it to my home and she said ok.

Egghead calls and leaves a message that it's against their policy to mail those to home addresses, so he's send one to my Pulmonologist. Huh? I specifically asked for them NOT to do that, since the Pulmonologist wants his patients to bring them with them -- otherwise, they get lost in his office. So, I'm back to egghead. And his policy. And so I ask him if it is their policy to make people come by 4 times to get their CDs and he says no. So, if he's already broken that policy 3 times at least, why not break one more?

Fortunately, the Oncologist's office has major influence over them, so one of the women at the checkout called and I think it was such that egghead probably couldn't sit still for at least a week.

Elaine, this gets us down. I know that very well. I know that the least little thing can really set me off in either a fury or a backwash of tears. I just try to pay attention to my own body, and when I need to, insist that someone pay attention to me. I can make a real pest of myself until they do, as you can well imagine.

You can do this. Take the beast by the horns and start dragging it around rather than letting it drag you. You're one smart lady, and I give odds that once they figure this out, they might not be so obstinant with you.

Take care of yourself.


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You do not deserve that treatment.

Hugs from us..........and several "Poor Babies"....

Doesn't it feel wonderful to have our

ARCHANGELs (spelling) on this board?

They can open a can of whoop a** in a nano second and give us all renewed strength.

Love P

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Elaine: I am sorry you are having such a hard time getting your results. I got some resistance from the onco nurse when I tried ot get my results before the onco doc saw them. All I had to do was walk across the parking lot to my pcp's office and they gave me a copy immmediately. If I did not have the copperation from the pcp, I would have made a big stink at the onco office, but fortunately it was not necessary. I think the oncologist office should have a release form you could sign. I think you should evoke your rights at this point.

Don M

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Thanks to all of my dearest of dear friends who know come the closest to knowing how I feel.

My initial thought was to call the imaging center and get the report, circumventing the insensitive Dr. But I got the call from the Doc's nurse five minutes AFTER the time I should have left for my counseling appt, sooooo I had to leave immediately.

My counselor was afraid that I would "upset" or "put off" the Dr if I was seen as being too demanding or anxious(maybe I need a new counselor :)) So she wanted me to practice being assertive and plan what I was going to say to try and get HIM to call me today.

Since she doesn't know me well, I don't think she knows that I have no trouble being assertive. The PROBLEM is that when a woman is assertive, she is often seen as being aggressive, as in a witch. Unfortunately, I do let my anxiety show in front of her, but not most people.

Anyway, I called imaging center and I will be picking up a copy of the report this afternoon, no problem. So my initial thought was on target.

Connie: I am still in Kansas. My HMO is confined to Kansas. I have probably changed Drs more than anyone on this board. Two oncs (soon to be three), three pulmos, four PCPs (one "retired" so I shouldn't count her) since DX.

There is no comprehensive cancer center in Kansas. I have made formal complaints. I may seem like a mansy pansy when I am at my lowest and come here to post, and often inside myself I do feel like a whimp, but I get up and go after it, putting on a fighting face when I need to. I go alone to all my Dr visits and scans. Sometimes my husband waits outside in the car if I am feeling particularly vulnerable.

They WERE wrong about my initial DX of an extremely aggressive cancer. But it sure wasn't the first time that my type of cancer was mistaken--when they first told me that, I didn't believe them, but my own research showed me otherwise. They keep saying that my "new" cancer is not much to worry a bout. Well, maybe for them, it's not much to worry about....

Which is why I want something done about these lymph nodes....

No reason to be angry with you, Connie.

So after picking up the report, I may be back for support. Either way, I'll let you all know.

I so much appreciate all of your heartfelt responses.

When my PCP gets back from maternity leave, I am surely going to make arrangements with her to give me my test results regardless of who ordered the tests. I think she will agree, and if not, I can be quite persuasive.

love and fortitude


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