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New ONC report.... might be recurrence/ might not be ...???


cindi o'h

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All.

Help!

Saw the new onc. locally here today for the results of the pet/ct from three weeks ago.

The report was ambiguous to say the least. The doc admitted he didn't see the films. He said it would be difficult to access them and that he relies on the the radiologist for her/his interpretation of the films.

I asked him a month ago if he reads the films. He said he does. I asked if I could have the same radiologist read the films. And if he has more confidence in one radiologist over another. His body language in crossing his arms over his chest let me know that this was a question that he wasn't comfortable with. He said that this was out of his control.

Anyway. Today, the onc. said that there were 3 areas that the radiologist pointed out where there may or may not be recurrences as I had that damn pleurodesis last Fall that is clouding the picture. However, there seems to be a lymph node that lit up at 6.8 SUV

He said either we could cut or wait. I don't want cut....not with all the scar tissue that I have. (It would never heal)

So, what can I do but wait and see???

I have some questions about the language that this radiologist used. Is it okay if I print it here to get ya'll's input on what it means? I can't figure it out.

thanks,

Cindi o'h

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I like Ginny's idea! When I had my first breast cancer I carried those slides around for opinions.

I went through a small hiccup last year when a new radiologist read my films. Turns out she was over the top, and 3 doctors reviewed them, and the crisis went away.

good luck

gail

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Oh man, Cindi, don't need this do ya? First, I would want WHATEVER onc to actually SEE the films for him/herself. Then I would want ANOTHER to look at it too. THEN even have ANOTHER rad read the films. Does insurance cover all that? If not, it should.

You KNOW we are all rallied around ya, don't you? No probllm here with posting report. Maybe someone will offer some suggestions to really help you out.

Love,

Kasey

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I vote for second opinion as well. No wait, I don't want just an opinion, I'd want someone to actually LOOK at what they were giving me their opinions about! The others are right.

I hope for only the best and for some answers for you soon.

Hugs,

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Hi Cindi,

Sorry the new Doc. is not giving you very good answers. I can't believe the doctor did not even read the films himself. I know you were not happy with U of M anymore, but maybe you could get them to give you a second opinion. I'm praying you get good news.

Denise

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Hi Cindi:

I am sorry your report was less than stellar. You are right, it is ambiguous and that is reason enough to have another radiologist read the scans. The following statements concerned me and also left me somewhat confused:

"The hightest SUV level in the right plerua is at the posterior right costophrenic angle where there is a bilobed area of increased metabolic activity with SUV level of up to 7.8."

and from impressions,

"3. There is an area in the right posterior costophrenic angle of pleura which does have some calcification and therefore may be post inflammatory as well. However this is the area most questionable for metastasis in the pleura and the only area which may explain the right adrenal activity on the previous PET scan."

Why does adrenal activity respond to a nodule in the lung? At any rate, I would be concerned about it. I think a bilobed shape can indicate cancer because it is not a regulary shaped nodule. They don't say how big it is either, but I guess that is because it is obscured by the pleurodesis?

As I recall, a suv of 2.5 is borderline for increased metabolic activity. Anything above that is cause for concern.

I hope you get some more definite answers soon.

Don M

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Oh Cindi....I feel your frustration....I go along with the other's...get that second opinion and let some one knowledgeable read the Pet....

Why is it so hard for your Doc to have access to the film...

Praying that you get some answer's soon Cindi....Iknow this stuff drives you nuts...and why 3 weeks for you to get results....I had mine the next day....took it on Friday...than the wkend and on Monday morning I had the results....Hang in there...maybe worrying for nothing...but just wish someone could tell you just what it is..

darn!!!.....PamS.

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Oh Cindi....I feel your frustration....I go along with the other's...get that second opinion and let some one knowledgeable read the Pet....

Why is it so hard for your Doc to have access to the film...

Praying that you get some answer's soon Cindi....Iknow this stuff drives you nuts...and why 3 weeks for you to get results....I had mine the next day....took it on Friday...than the wkend and on Monday morning I had the results....Hang in there...maybe worrying for nothing...but just wish someone could tell you just what it is..

darn!!!.....PamS.

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Get those films in your hands and take them to another Onc to be read. Something does not seem right, including your Doctor.

Now you have me worried. Please seek out another to see what is what. :roll:

Maryanne

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Cindi, I would definitely get another opinion - hopefully you can get a doc that is an expert in reading these things... and then get another opinion. I agree, I wouldn't cut unless I really had to - already done it twice. Prayers coming your way.

Take care,

Nancy B

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Hi Cindy, I tried reading your results too but don't understand these things.

I've been in this kind of limbo with the radiologist reports too. My onc reads the report, says it's bad but she doesn't read the scans. So I have onc call my pulmonary to make the appointment to talk to him asap, also I call pulmonary office myself to make sure the scans (new and old) will be there for him to read while I'm in his office. Pulmonary doc puts scans on lightbox and we look at them together. We look for changes.

If pulmonary doc is unsure, he calls up surgeon and makes appointment for me asap. Last time this happened to me, the surgeon got ticked off with the radiologist report and told me to meet him in radiologists office within the hour. He talked to radiologist first, then called me and hubby in. My surgeon then reviewed scan on light box with radiologist present….radiologist sat in the corner with head down. Surgeon concluded that so much scar tissue from radiation, surgery etc, that results were inconclusive. He then said "This CT/Pet stuff is voodoo science, and my advice is to go home and not come back until next year." That was two years ago. Guess what, surgeon was right. Spots disappeared on next scan, however, radiologist then concluded possible false negative. Right. Well those spots are still a false negative because he hasn't been able to find them on the last three scans.

Anyway, Cindy, this is has been my plan of attack with bad reports. I have to wait and see too, but I try to get everyone else involved just for peace of mind. I hope your scans ultimately turn out to be OK. Barb

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My last onc did not read scans either. I would always take them to my pulmonolgist if I had questions. He would go over them in just the same manner that you describe Barb, and answer my questions.

My new onc reads scans and invited me to look at the new set. I knew for sure that the new nodule was not in the last scan because I had gone over it with my pulmonologist and there was nothing that big on the August scan.

I think I am going to pay anothr visit to my pulmonolgist after my PET scan and see what he says about all my latest stuff.

Don M

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thanks all for all of the good advice and opinions. I knew I could count on you for good input.

I think you are all right. The more expert eyes that see the films the better. I know it must not be easy with all that scar tissue in there, so I have to give the radiologist leeway. Truthfully, for at least the last year, there has been much hoohaa about my scans every time I have them done...which has been often.

So, I should be used to the alarm by now. I am hoping again that it is a false alarm as it has been in the past. Barb, I like what your surgeon said about this being voodoo science! What a funny guy!

It is not diagnostic for disease. I have to keep that in mind. However, it can be a good clue to further pursue diagnosis, ie. cut and scope.

I am surprisingly not shook up this time. I went through that last Fall with the onc. at the U. I still have on my telephone recorder his message after the following scan regarding "good news. there is nothing worrisome, and the concerning area miraculously disappeared." I am keeping that one. It is a reminder to me not to get all excited about these films, but rather to be more analytical and thoughtful about covering all I need to being I am my own advocate.

Thanks again for all of your input! Do so much appreciate it.

Meet me at the pub! I am drinking there tonight with a bunch of monkees (they are all friends of Haylee's)

Cindi o'h

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Cindi -

I don't know anything about any of this! Yet I DO know that you will fight whatever is thrown your way. I am hopeful that the need for a fight will be minimal or non-existent! You are in my thoughts and prayers tonight for peace of mind and a body capable of healing if whatever shows up.

Love,

Holly

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