MegP Posted February 6, 2008 Share Posted February 6, 2008 My brother was just told he has "many" nodules on his lungs. He has a PET scan scheduled for 2/15 and an appt with oncologist on 2/13. His doctors are scrambling to get his appts quickly. This is scaring us. He is 38 yrs old and has smoked occasionally. Any advise on what to expect would be greatly appreciated. This is so new to us and I need as much info as possible. Thanks Quote Link to comment Share on other sites More sharing options...
Connie B Posted February 6, 2008 Share Posted February 6, 2008 http://www.stronghealth.com/services/su ... odules.cfm This website will give you some good information. Check it out. Nodules are of great concern and doing a PET scan is a good thing. Best wishes, Connie Quote Link to comment Share on other sites More sharing options...
MegP Posted February 6, 2008 Author Share Posted February 6, 2008 Thanks - Connie Quote Link to comment Share on other sites More sharing options...
Kasey Posted February 6, 2008 Share Posted February 6, 2008 Hi and welcome, Meg. Connie's link will give you lots of info. Also there are many here with nodules.......some just one or a couple, to some with many. My own dear hubby is one of them. If you SEARCH and put in 'nodules' I think you'll find a lot. For now, just don't get ahead of yourself. Wait for the PET results and listen to what the docs have to say. Then you'll be ready to move forward. In the meantime, take some deep breaths and gather info. Many here can walk you through this. Kasey Quote Link to comment Share on other sites More sharing options...
MegP Posted February 6, 2008 Author Share Posted February 6, 2008 Thanks for all your support Kasey. We are from PA also - where are you located. I noticed in your history that you went to Fox Chase. They are talking about having my brother go there also. What did you think of Fox Chase? Quote Link to comment Share on other sites More sharing options...
Kasey Posted February 6, 2008 Share Posted February 6, 2008 Meg ~ I am sending you a PM. It is a personal message. You will need to go to My Mail (up in the purple section) and click. Then it's just like email. Give me a couple of minutes and then check your mail Kasey Quote Link to comment Share on other sites More sharing options...
gail Posted February 6, 2008 Share Posted February 6, 2008 Many of us are from the Phila area. Fox Chase, U of Penn, Jefferson--all renowned cancer centers. That said, all of my doctors are at Pennsylvania Hospital, and I think they are terrific. Several opinions are wise. gail Quote Link to comment Share on other sites More sharing options...
Leslie Posted February 6, 2008 Share Posted February 6, 2008 Hi Meg-- I know how scary this all must seem. I just want you to know that nodules can be lots of things--not just cancer...for example, there is a condition called sarcadosis that also produces nodules in the lungs. There is so much uncertainty before you get the biopsy--and I know it is almost impossible to avoid going through all the "what ifs". Try--if at all possible--not to get ahead of yourself. If it turns out to be cancer, there are many treatments available and your brother will have many options to choose from. The important thing, at this point, is that his doctors are on top of it--and he is having all the right tests peformed. And if it is cancer, you've come to the right place for support and information. My thoughts are with you, your brother, and your family. Best, Leslie Quote Link to comment Share on other sites More sharing options...
MegP Posted February 7, 2008 Author Share Posted February 7, 2008 Thanks everyone for you support. I will keep you posted when we get the PET scan results. No matter what happens we will support my brother in whatever he needs. Quote Link to comment Share on other sites More sharing options...
MegP Posted February 19, 2008 Author Share Posted February 19, 2008 Hello everyone - my brother just got the news from the oncologist that they want to do a biopsy (the PET revealed a 4cm nodule/mass) Is this the appropiate action once the PET has been completed? Also, will they remove the mass when they biopsy? I know everyones story is different, we just would like to be somewhat prepared. Thanks again for all your advise. Quote Link to comment Share on other sites More sharing options...
Connie B Posted February 19, 2008 Share Posted February 19, 2008 They need to find out if this is cancer or not. A biopsy will indicate that. Being it's a 4cm are they calling it a MASS? That I know of, most nodule's are MM and not CM in size. I have a 4mm nodule in my right lung now, but when I had my mass it was a 3.4cm in size. A biopsey is the next step to finding out if it's canerous or not. PET scans can not tell you what kind of cancer it is (IF it's cancer). When does he go for his biopsy? What kind of biopsy did they tell him they were going to do? Keep us posted. Quote Link to comment Share on other sites More sharing options...
Nick C Posted February 19, 2008 Share Posted February 19, 2008 Biopsy is typically with a needle or a scope...the removal of a mass is a bigger procedure that you wouldn't do with out first being sure it is cancerous. Quote Link to comment Share on other sites More sharing options...
MegP Posted February 20, 2008 Author Share Posted February 20, 2008 His nodule is 4mm (it was a typo). He has an appointment with surgeon today. Will know later when they are doing the biopsy. The nodule is in the upper lobe. They said they will need to do a biopsy going in the neck and down with scope. I should know more tonight. Will keep you posted. Thanks for all the advise. Quote Link to comment Share on other sites More sharing options...
Connie B Posted February 20, 2008 Share Posted February 20, 2008 They must be doing a Bronchoscopy. I didn't think they did them for a nodule that small. That's pretty small in size. We have many folks here on the board that have 4, 5, 6, mm nodule's (me included) but never had a biopsy done on them because of there size. They usually just watch them via CT scans. This is different hearing what they are doing with your brother, being it's only one 4mm nodule. Well, it's good to be on top of things. I found this website I thought I would share with you regarding Nodules. http://www.guideline.gov/summary/summar ... c_id=11408 For surgical candidates who have subcentimeter nodules and no risk factors for lung cancer, the frequency and duration of follow-up (preferably with low-dose CT) should depend on the size of the nodule. We suggest the following: Nodules that measure up to 4 mm in diameter not be followed up, but the patient must be fully informed of the risks and benefits of this approach Nodules that measure > 4 to 6 mm be re-evaluated at 12 months without additional follow-up if unchanged Nodules that measure > 6 to 8 mm be followed up sometime between 6 and 12 months, and then again between 18 and 24 months if unchanged Grade of recommendation, 2C For surgical candidates who have subcentimeter nodules and one or more risk factors for lung cancer, the frequency and duration of follow-up (preferably with low-dose CT) should depend on the size of the nodule. We suggest the following: Nodules that measure up to 4 mm in diameter be re-evaluated at 12 months without additional follow-up if unchanged Nodules that measure > 4 to 6 mm should be followed up sometime between 6 and 12 months and then again between 18 and 24 months if unchanged Nodules that measure > 6 to 8 mm be followed up initially sometime between 3 months and 6 months, then subsequently between 9 and 12 months, and again at 24 months if unchanged. Well, my best to your brother. Let us know! Quote Link to comment Share on other sites More sharing options...
MegP Posted February 21, 2008 Author Share Posted February 21, 2008 Well, what a difference a day makes. Finally, I got some real information from my brother. They aren't doing a medial stenectomy. When he had his PET scan not only did the one nodule show "hot" but so did the lymph nodes near his groin. They are going into the groin tomorrow(Fri)to biopsy the lymphs. They think it may be sarcoidosis (not sure of the spelling)I will keep you posted. Thanks again. Quote Link to comment Share on other sites More sharing options...
Patti B Posted February 21, 2008 Share Posted February 21, 2008 Meg- Just wanted to say good luck tomorrow and please keep us posted. Your brother is lucky to have you in his corner!! Hugs - Patti B Quote Link to comment Share on other sites More sharing options...
Connie B Posted February 21, 2008 Share Posted February 21, 2008 He may very well not have lung cancer at all! HOORAY if that's the NEWS!! Sarcidosis is common and often mistaken for lung cancer, but it is treatable. (but it can be very seroius too) They thought I had that too at the beginning of my journey. Sounds like your brother is at the early stage of whatever it is he may have. Let's hope whatever it is, it's nothing serious and most of all that it's not lung cancer. That way you don't have to hang out here on a lung cancer board. I wish all of us could have that happen! I googled it and her's what I found under the MAYO CLINIC website. There's lots more if you wish to go look. Screening and diagnosis Sarcoidosis produces few signs and symptoms in its early stages, and when they do occur, they often resemble those of other illnesses. For that reason, your doctor will diagnose sarcoidosis only after ruling out diseases with similar features, such as lymph cancer (lymphoma), tuberculosis, rheumatoid arthritis, rheumatic fever and fungal infections. Even then, doctors can miss sarcoidosis. In the majority of cases, undiagnosed sarcoidosis disappears spontaneously, but a few people go on to develop more severe signs and symptoms — usually over a period of years. No single noninvasive test can positively identify sarcoidosis, but initially, your doctor is likely to order a chest X-ray. Depending on the results, you may then have one or more of the following: Lung function tests. Noninvasive pulmonary function tests measure how much air your lungs can hold and the flow of air in and out of your lungs. They can also measure the amount of gases exchanged across the membrane between your lung wall and capillary membrane. During the tests, you're usually asked to blow into a simple instrument called a spirometer. You're most likely to have pulmonary function tests if you're short of breath or a chest X-ray shows changes in your lungs. Blood tests. These are used to check your liver function and the amount of calcium in your blood. For reasons that aren't clear, some people with sarcoidosis have higher than normal blood-calcium levels. Blood tests can also measure a substance called angiotensin-converting enzyme (ACE). Many — but not all — people with sarcoidosis have high levels of ACE, which is produced by the cells that make up granulomas. High ACE levels can also result from other illnesses. Bronchoscopy. In this procedure, your doctor uses a thin, flexible tube (bronchoscope) to examine the inside of your air passages and to take a small tissue sample (biopsy) for laboratory analysis. The sample can tell your doctor whether noncaseating granulomas — microscopic changes in tissue that occur in sarcoidosis — have formed in your lungs. Tissue sample. If parts of your body other than your lungs appear to be affected — your skin, lymph nodes or the outer membrane (conjunctiva) of your eye — your doctor is likely to arrange for a specialist to take a tissue sample (biopsy) from these areas. The samples are then examined for noncaseating granulomas. Because these granulomas can result from a number of conditions, their presence alone can't confirm a diagnosis of sarcoidosis. Other subtle infections can produce granulomas. Mediastinoscopy. In this procedure, your surgeon removes a sample of lymph nodes from the space between your lungs (mediastinum) using one or more small incisions. If you have sarcoidosis, the disease is likely to have spread to the lymph nodes in your chest cavity even if the nodes aren't enlarged on a chest X-ray or computerized tomography scan. Risks of the procedure include bleeding, temporary hoarseness and reaction to the anesthetic. Slit-lamp examination. In this exam, your doctor uses a high-intensity lamp to examine the inside of your eyes for damage from sarcoidosis. Quote Link to comment Share on other sites More sharing options...
Adrian Posted February 22, 2008 Share Posted February 22, 2008 Go SARCOIDS Go! Quote Link to comment Share on other sites More sharing options...
MegP Posted February 25, 2008 Author Share Posted February 25, 2008 Hello everyone, The news is sarcoidosis. Since he isn't symptomatic - the doctors wants to watch him and do follow up CT scans in the future. Does this sound customary - based on the circumstances? We are very relieved and I wanted to thank everyone for your support. My prayers are with each and every one of you. Thanks again Quote Link to comment Share on other sites More sharing options...
Connie B Posted February 25, 2008 Share Posted February 25, 2008 I don't know how they treat scaroidosis, but the good news is, you don't need a lung cancer board! HOORAY FOR YOU AND YOUR BROTHER! You might want to google Scaroidosis being it's not lung cancer. Best wishes to you and your brother. Quote Link to comment Share on other sites More sharing options...
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