Getting a bit closer (update)

Had a great visit with the surgeon today! They have a team that will be going over my information and see if in fact I will have the needle biopsy or just go ahead with VATS... He wanted to follow up with the ONC (who is associated with Moffitt) and call me tommrow, the great news is I felt very comfortable with him, it's a new facility that only does heart and lung surgery!!!!

Bad news with Moffitt in Tampa is Dr Sommers is not a participant with my insurance so I can not see him, they are also suppose to call back with a new appointment with one of the other two Thoracic Surgeons there that are particpants with my insurance...

Okay... Had my follow up with the pulmonologist today and he gave me the results of my MRI from last thursday (Which was not as bad as the pet/scan, due to the valium and they had music for me to hear)

First the MRI, "no evidence of abnormal signal intensity within the left lobe of the liver is demonstrated to suggest a liver lesion or to account for the area of activity seen on the prior PET scan"

Okay... now Im going to copy what the impression from the PET/CT says about the lung mass
" The 6cm mass at the left lung base shows mild hypermetabolic activity at 2.38. Recommend histologic sampling of this mass for histologice evaluation. This is an equivocal amount of metabolic activity. Low-grade malignancy or lymphoma is possible or in the differential diagnostic list"

I think that all means good news in a way... (never thought a lung mass would be good news!) The PET results and the MRI results both concluded that from head to knew the only abnormal area of concern was the mass in my lung, which appears solid with areas of necrosis... The MRI also said that i had Splenomegaly, or an enlarged splen, that was also noted on my first CT scan on 7/24/09...

Im going to talk with a thoracic sugeon here in Palm Beach tommrow am, and am still scheduled to go to the Moffitt Center next Tuesday for a consult with DR. K. Eric Sommers...

I was not sure if I should keep the appointment in Tampa or not as the pulmonologist says he is 99% sure it is not cancer (he is also the guy that said it was just an infection and would go away) Have not heard back from my ONC yet, he was out yesterday and today...

The surgeon seemed to want to schedule a surgery ASAP, I know my gut says go to Tampa first, and I should follow it...

Please feel free to share any thoughts with me!!!! or if you have had similar experiences or image results...

Thanks, and have an outstanding day!
Christopher

By stage4survivor
Posted August 25, 2009 at 2:23 pm
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O77G,

This lung mass is 6cm? Pretty big.
Surgeon is 99% sure not malignant? Boy, that's stretching it, IMO.
I think your gut is right, get a second opinion.

Ask everyone(surgeons) what method, thoracotomy, VATS, wedge resection.

At Moffitt request your case go to the tumor board for multidisciplinary review(insist/demand)

G

By orlando77guy
Posted August 25, 2009 at 2:40 pm
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Thanks! No it's the pulomonologist who thinks im "too young for lung cancer". The Surgeon just talked with the pulm. when they scheuled me to come in for a consult tommrow am... and he seemed like it would be no big deal, just go in and cut it out... Ill see how I like him face to face tommrow...

By LuvMy2Boys
Posted August 25, 2009 at 4:13 pm
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Hi Orlando77guy,

Glad to see you are finally getting somewhere. Not sure if I am understanding what you wrote but are they saying it could be Lymphoma? The only reason I ask is because I have heard of an enlarged spleen being a symptom of Lymphoma. I am not trying to scare you or make a diagnosis I am just curious if they are going to follow up on the Lymphoma route. Just a little FYI , if it does turn out to be Lymphoma I hear that is highly curable and has a survival rate of like 95%. I had a friend that was diagnosed with Hodgkins Lymphoma in March of 2002 and by July of 2002 he was in remission and has been in remission every since. I hope whatever it turns out to be that you get answers soon and are the the road to a speedy recovery. I will keep you in my prayers.

Take Care,
Ronny

By orlando77guy
Posted August 25, 2009 at 4:45 pm
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Thanks! No i don't think they are really looking at Lymphoma as all my blood work is normal, and all of the lymph nodes are of normal size and showed zero uptake on the PET... I think they were just remarking on the types of tumors that would have a lower level of uptake...

By HighlandGuy
Posted August 25, 2009 at 4:57 pm
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Renenber: What the radiologist said after the PET/CT scan: namely that you needed a biopsy to determine what that mass was. He is saying it may very well be lung cancer!

I would strong recommend that you consult with Moffitt before taking any further steps. They have the volume of patients and experience in dealing with lung cancer that perhaps not other clinic in your area have.

Good Luck!

HighlandGuy

By cuddles53
Posted August 25, 2009 at 5:17 pm
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I would go with the Moffit center for if it is anything they will have more experience to deal with it, always go with your gut feeling first.
Make absolute sure it is not cancer or lymphoma, do not just take the word of one or two, your case sounds to be more complicated and not real clear cut, you need extra advice. I know what will happen in that you will get more opinions and may feel more confused but I would seek out all options of finding out exactly what that is, I think a biopsy is what you need and would not feel comfortable myself without one. I am not a dctor weither but I think my opinion is a good one.
Sandy

By orlando77guy
Posted August 25, 2009 at 6:21 pm
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Thanks all!!! The talk with the surgeon is to talk about VATS biopsy... I questioned then if they are in there than why not just take it out? The current doctors I am seeing and have seen feel that Fine Needle is not an option in my case, due to location and amount of necrotic tissue...( my ONC thought that if I did have a met to the liver it would at least give them a chance to get a biopsy to see what they were dealing with, but lucky for me it was a false positive!)
But I have decided that I am going to keep my appointment at Moffitt, they let me know that if they believe that after seeing the acutal films they are able to biopsy the same day... I have a meeting with a Team, Thoracic ONC, ONC, Radiologist, and Pulmonologist that day to go over all of my tests, schedule and or complete new tests... so I feel really good, my patient care coordinator from there called me today, by the grace of God, to make sure I had recieved my info packet and to answer any more questions I had, she reassured me that no matter what it is a good idea to come and talk with her experts, whether I go there or seek treatment else where...

It is kind of crazy to me now that I have read how most people would have already recieved treatment at this point, or at least have an idea of what they were dealing with! I know it's not from a lack of persistance on my part, I am a profesional Doctor stalker now, if only they listed their home phone numbers! haha

By Granny888
Posted August 25, 2009 at 6:25 pm
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You have good people here. And good instincts. This is not a multiple choice question -- you don't go til you get the answer you want you go til you get the answer you need.

You need to see your guy in Tampa.

By orlando77guy
Posted August 25, 2009 at 6:31 pm
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Thanks Granny! How are you doing? You have been in my prayers lately as you have been such a great source of info and insperation since I first found this site!

By peyz33
Posted August 25, 2009 at 6:40 pm
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I'm sorry - the pulm and the surgeon said "no big deal"?????????????????????? WOW - no biggie for them I suppose - get a 2nd opinion and fast!
Karen

By Granny888
Posted August 25, 2009 at 7:02 pm
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Doing well -- I even think the pain is gone (hard to use it as a gauge when it wasn't THAT bad to begin with but I'm supposed to and it doesn't hurt!). The trick will be a month or so down the road when I make him do a test. I don't know why he suddenly decides on no tests but I thought he knew that doesn't work here! He's monitoring the CEA but ... that's all for now.

By orlando77guy
Posted August 25, 2009 at 7:13 pm
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Good to hear! Im gonna keep you in my prayers all the same! You have always given me great advice, and helped me real quick to remember that the doctors are there for me, not vice versa, so I have gotten a lot better at asking questions and even though I may doubt myself, I am seeking the best opinions I can get!

By Barb267
Posted August 26, 2009 at 7:33 am
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Orlando,
Cancer or not, that mass is large. I would want it out asap, my thoughts being what if it continues to grow?

Blessings,
Barb

By Granny888
Posted August 26, 2009 at 10:54 am
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Yea what if -- and every time it doubles. My 9cm mass -- in less than 3 years I asked? As it wasn't (at least not obviously) on my chest xray before my surgery 3 years before. And my onc reminded me, everything it grows larger it doubles. Ouch.

By mitziger
Posted August 26, 2009 at 11:10 am
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Hi Orlando guy, Dr Eric Somners was my surgeon. He seems very good, I really didn't see a lot of him but his arnp, can't think of his first name but last name is Garrett is wonderful. The doctor did vats surgery and removed a 1.2cm nodule on my left lung. He got a clear margin. He does an awful lot of lung surgeries along with the other surgeons there. They have wonderful food too, too bad I had so much nausea that i didn't get to eat until about the 4th day. I was released on the 5th day. My surgery was a year ago this month. Having my ct again today to check this out. I wish you the best of luck and Moffitt is a very good place to be for this kind of surgery. My pulmonary doctor referred me to him and he even came to town to meet my doctor I was told on my last visit. Good luck, I sure would not watch and see I would get his opinion. Will be thinking about you. Whoever you have with you, spouse, partner or whatever gets to stay in the room with you after the first night. They have a cot in the rooms and that is very nice too that you don't have to go to a motel but can stay with the patient....Mitzi

By Kammy7
Posted August 26, 2009 at 1:48 pm
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Hi Orlando guy....I also went to Moffitt and it was the best decision I ever made. Dr Robinson was my surgeon (wonderful) and Ive heard great things about Sommers as well. Had an 11 cm tumor on my left lung so they took the whole lung! Had surgery Mon morning and went home Thursday. That was Nov 1st 08. Back at work 4 weeks later. Know your in great hands. Let us know how things work out. Best wishes......Kim

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