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Guest LisainFlorida

Not yet diagnosed....Waiting and Wondering

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Guest LisainFlorida

This all started when I had a chest ct scan for some upper back pain. They found 5 small nodules on my left lung, largest measuring 1.5cm, and recommended a PET scan. I took the PET and it came back positive with a hot spot in my mediastinum. Pulmonologist believes it is nothing to worry about. Bronchoscopy came back negative. I

Went to see medical oncologist recently and he says the only way to know for sure is to get a biopsy from my mediastinum. But, the only way to get to where it is at is to open up my chest. Mediastinoscopy will not work because of location.

I am 39yrs. old and a smoker of 22 years, so there is some risk. I also had a grandmother die of LC.

This last month has been rough. Test after test.

Mammogram came back questionable for a 5mm. area in my left breast. A breast mri is recommended.

Thyroid ultrasound came back a multi-nodular goiter.

Waiting to take thyroid uptake.

I also have an appointment at H.Lee Moffit Cancer Center on June 20th.

Does it always take this long to get a definate diagnosis? This all started on April 20th.

Thanks for listening.

Lisa

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Hello Lisa and welcome.

I am sorry you had to find us here, but glad you have posted. Although I personally cannot offer you much in the way of answers to your questions, I can assure you that there are many, many people here that can and will be able to help you. You will find so much care and support here as well.

I have you in my prayers..

Chris

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Welcome Lisa; it was two months before I finally had surgery for my first cancer after a lung mass was found. I think it may have gone faster if I had gone to a major cancer center. If you are going to Moffit, I think you are in good hands.

It seems like there is nothing definite found yet and you are in a bit of a gray area and it may take a while to sort through all of it. I wonder why they can't do a mediastinoscopy. Is that what Moffit said? I would submit to a biopsy. I hope it all turns out to be nothing as your pulmonologist said.

Don m

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Guest LisainFlorida

Thank you to everyone who responded. I appreciate the input and support. I haven't scheduled anything yet. I go back to Lakeland Regional Cancer Center on the 16th to discuss my options. I will be going to Moffit for the first time on the 20th. The way the oncologist explained it to me is that a mediastinscopy would not work because where they needed to get to would not be possible. They would actually have to open up my chest.

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Hi Lisa,

Of course, we have been through what you are now going through. Not exactly your experience, but doing all the tests and all. This is a whole 'nother world, isn't it? I had never heard of a mediastinoscopy before lc!

Well, there are many points in your post that don't sound exactly right to me. And what I mean by that is knowledge is POWER!

First of all a 1.5 cm is no longer a nodule.. it is something that is not to be overlooked and a pulmonologist willing to sweep it under the carpet over a negative bronchoscopy....well, I don't understand that way of thinking at all. If I were the pulm., I would think it would be my job to find the answer to what that thing is.

Secondly, I am not clear as to what it was that lit up in your mediastinum on the PET. Was it a lymph node or one of the nodules? In what part of your lungs are the "nodules"? What was the SUV on the hot spot on the PET?

Also, I don't understand if you have a hot spot in your mediastinum, why can't a mediastinoscopy and biopsy determine what it is? What, anatomically would be blocking the scope/snippers from getting at it????

More information to us please. Do you have the reports from the specialists that you have seen? Oftentimes these shed more light on the subject.

Very good luck to you in searching out the answers. They will come. We are here to help.

Cindi o'h

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Guest LisainFlorida

This is what the CT report said:

No mediastinal adenopathy...There is mild adenopathy at the left hilum with the largest nodule 1.5 cm. There are multiple nodules in the left lung. Two or three in the posterior left lower lobe measures 1cm. each. One in the posterior left upper lobe measures 0.7 cm.

Left lung nodules and left hilar adenopathy, raising suspicion for malignancy. Atypical infection such as fungus or other granulomatous disease might also give this appearance.

This is my PET report:IMPRESSION:

Left lower lobe nodules are somewhat equivocal for malignancy. However, with increased radiotracer in the mediastinum I am suspicious of left lower lobe malignancy with metastatic left hilar and mediastinal lymph nodes. However, lymph nodes are not definitely identified on this localization noncontrast CT scan.

Nodules in lungs had a suv of 2.5 and 3. One area near esophogus had a suv of 4 and hot spot had suv of 6. I haven't got the report anymore but I think that is what it said. Oncologist says nodules in lung not a concern right now because of low suv.

Is this true? This is all new to me.

Oncologist did say hot spot was probably lymph node but mediastinoscopy would not get to that location.

Hopefully I will find out more on the 16th. Pulmonolist says hot spot is where no nodule is.

He believes it to be a false positive PET.

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Welcome Lisa,

I am sorry for all you are going through. Unfortunately a diagnosis is difficult if not impossible to do unless they can extract some material to test and stain.

I would go for the biopsy. My husband also wasn't able to do a mediastinscopy either because of placements behind veins etc... and he actually had 2 biopsies one to a hilar lymph node under his collarbone, and about a year later a biopsy to the liver. They weren't easy, but they were manageable. It is better to know for sure than to work off of guesswork. An accurate pathology can dictate your course of action.

I pray this is something non-cancer such as an atypical infection. But it is important to find out for sure, and if it is cancer, we are here to support you and help in any way we can.

God Bless and keep you

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Hi Lisa,

My original diagnosis was quite fast last May. I had pain from bone mets that actually precipitated the testing. I went for radiation immediately to alleviate the pain and then relocated to FL where I am being treated at Moffitt. They also arranged for bone scan, MRI and CTs of chest and abdomen and brain MRI.

It took Moffitt some time before they actually started me on a chemo regimen because they also did multiple tests and I needed radio surgery for brain mets. So although I was diagnosed in May, chemo began in August.

I can tell you that I find Moffitt to be very good and hope you'll get some good information and care.

Best wishes.

Mary

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Wanted to say hello and also that . . .

I had two breast cancers before my lung cancer. I had a biopsy on the lung that was inconclusive. When I saw the surgeon after the lung biopsy he remarked that the biopsy should not have been done because the nodule needed to be removed anyway. That nodule was 1 cm.

I also have a multi-nodular goiter. I have had it since 1988, before any of the cancers. I am scheduled for surgery in 2 weeks to have it removed. It has grown in the last few years.

gail

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Lisa,

I am so sorry to hear about the last month and 1/2 of your life being so hard. This is such a waiting game. You have come to an excellent place though, and I hope you know how supported you are here. Please, keep us informed, and know that there are many of us praying for those with cancer, health issues, and lost spirits because of the "game" cancer puts us into.

Take care!

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Lisa did the doctor mention the option of a Trans-Esophagial biopsy? They put a tube down your throat to do it. If you can't get at that mediastinal node from the outside maybe they can from the inside.

Donna G

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Hi Lisa ~

Gee, you are having a hard time getting a diagnosis! Thank goodness you are going to Moffit so the experts can sort this all out for you.

I know the wait and the confusion is difficult and I bet it is just weighing on your mind. You can call scheduling at Moffit and ask them to call you if they have a cancellation. That might help!

If that's not possible, know that we are all here for you!!

Pam in FL

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Waiting is so difficult, isn't it? The anxiety is sometimes overwhelming. May I ask if you have been prescribed any anti-anxiety medication? If not, I would suggest it. It helped me a lot when I was waiting for my initial diagnosis.

I had cervical cancer, so taking the biopsy was not much of a problem, and fortunately I got the results in 2 days.

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Guest LisainFlorida

Thanks for writing..I was already on Prozac before this all started. My doc did prescribe me zanax.

I try to only take it if I need it. I am also on pain meds and muscle relaxers for some bulging discsin my upper back.

Moffit called today and told me I needed to reschedule. So now the appointment is on the 27th of June. She said the doctor was on vacation.

I guess this is the wrong time of year to be going through this..lol

Lisa

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Sorry you're having to wait. I know it's very hard. I take Ativan sometimes for anxiety, whether for general anxiety about cancer or the bad anxiety before scans.

Hmmm, does your doctor not have someone filling in for him while he's on vacation?

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Hi Lisa,

I just want to welcome you here. I am really sorry for all you are going through and it is a lot and I know how scared you must be. When they first found the tumor on his lungs everything went really fast as far as all the tests and biospy. I wish you wouldn't have to wait too long.

I will send prayers out to you on the 16 for good results. Let's just hope it is a false positive.

Maryanne :wink:

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Guest LisainFlorida

I just want to let everyone know that this week I will be having a thoracoscopy. They are going to take out my biggest nodule and biopsy it. Then I will know for sure....I Hope.

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I'm praying hard that it will turn out to be benign.

I had the vats procedure that Cindi mentioned and it is much easier on the patient, if you aren't sure please ask your doctor.

Kathy

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