neilb Posted February 13, 2007 Share Posted February 13, 2007 I've lurked for a while, but now I'm freaking and need to post. I'm 47, had a right middle lobectomy in June of 2005 for a small (1.0 cm) adenocarcinoma. Lymph nodes checked out then, so I was 1A with no need for other treatment. I had quarterly CT scans/X rays the first year. All were good. Had another one in October of 2006. It was reported to be good. For the last 6 weeks, I've been feeling lousy (cough, chills, etc.). Three weeks ago, another CT was taken. This time, the radiologist identified two lymph nodes in the right mediastinum and said "metastasis cannot be ruled out". The weird part is they said one of the nodes (1.5x2.4 cm) had been that large back in October (and has grown slightly from the one year checkup the previous June). The other was reported to be newly enlarged. My PCP said he wasn't worried, but he referred me to a pulmonologist for a second opinion. He instantly said PET scan and see surgeon for likely mediastonomy (I'm sure I spelled that wrong). So, I'm very worried. Anyone have any experience with this sort of thing? I'd appreciate either reassurance or advice. Thanks! Quote Link to comment Share on other sites More sharing options...
Don M Posted February 14, 2007 Share Posted February 14, 2007 Hi: you have been cancer free for a year and half now, so I wonder why a malignancy would show up in your mediastinum instead of your lung if it is a new primary. Maybe you just have an infection and your lymph nodes are swollen. The PET scan will show if there is any uptake on the mediastinum. They usually do full body scans from the head to just above the knees. The mediastinoscopy will be done to prove or disprove cancer. The PET scan will show uptake at the mediastinum if it is an infection too. But I suppose it is a good idea to have it anyway, to check out the rest of your body for any hotspots. I think lymph modes can be enlarged for whatever reason and not be malignant or show up on a PET scan. I have had 2 lymph nodes that are about 1.5 cm., and they have not changed. They are not mentioned any more in my scan reports. I hope the mediastinoscopy proves no cancer. Don m Quote Link to comment Share on other sites More sharing options...
Debi Posted February 17, 2007 Share Posted February 17, 2007 Hey Neil, I'm sorry I'm late in responding to your post- I haven't been on the site for a few days. I'm not sure if I can help you but I certainly am the Early Stage expert on freaking out!! I understand and certainly emphasize with your fears at this point - but I agree with what Don said- lymph nodes can enlarge for a variety of reasons. The fact that you have had chills and a cough could very well mean you have some sort of respiratory infection, and that could also enlarge the other lymph node. Although this certainly needs to be checked out, I have seen enough people on this board get sent to a specialist only to be told that it was 'nothing'- It is only because of your history that the doctors need to be so thorough. The fact that the radiologist wrote 'metastasis cannot be ruled out' is a testament to the fact that you have had lung cancer rather than "oh it looks like its cancer". They are being careful - that's a good thing although it doesn't feel like it I'm sure. Hang in there and welcome out of lurkdom! When is the PET? Quote Link to comment Share on other sites More sharing options...
georgesalley Posted February 17, 2007 Share Posted February 17, 2007 Hi there! My thorasic surgeon at Duke, Dr. Harpole, told me he would never make a diagnosis of cancer based on enlarged lymph nodes. In my case, a mediastinoscopy proved they were negative, and a later lobectomy (where most of them were removed) also proved negative. Cheers, Geo Quote Link to comment Share on other sites More sharing options...
neilb Posted February 17, 2007 Author Share Posted February 17, 2007 Thanks, everyone for your replies. I had the PET Scan on Thursday, saw the surgeon yesterday. Unfortunately, both nodes lit up (and there was a small amount of uptake in the right side of my neck as well. Surgeon indicated that we need to do mediastinoscopy, which will happen on Feb. 26. I'm pretty much resigned to the result (I'm guessing it's now an 80-20 proposition, at best). Thanks for all your support.--Neil Quote Link to comment Share on other sites More sharing options...
carolhg Posted February 17, 2007 Share Posted February 17, 2007 Neil, I had a nodule in my left lung that had always been there. It did not light up on my first PET scan, but it did on my second PET after my chemo and radiation treatment to my right lung. My surgeon would not do surgery until he found out if it was cancerous or not. I had a biopsy on it and it was turned out to be scar tissue. Quote Link to comment Share on other sites More sharing options...
Eileen Posted February 18, 2007 Share Posted February 18, 2007 I had the same thing happen to me--they did the biopsy of the nodes, and all was good--just an infection. as you can see, I am still around almost 7 years later! I hope you have the same results Quote Link to comment Share on other sites More sharing options...
DrWest Posted February 18, 2007 Share Posted February 18, 2007 First, everything you've had done makes good sense, as does the plan from here. I know you're thinking that PET-avid enlarged lymph nodes are more likely cancer than something else. While it could be infection, it's fair to say that these are now cancer until proven otherwise. But what I'd like to focus on is that this is the reason why we want to be vigilant about following up people who have had treatment for early stage lung cancer. If this is cancer, it's still curable if it's contained in a couple of mediastinal nodes. I've treated such patients with concurrent chemo and radiation, and I follow at least one patient who is more than 5 years out from even the recurrence of her original stage I surgery from a few years before that. She has no evidence of disease progression over the past several years, nothing changing scan after scan. So take it one step at a time and know that there are options for dealing with this if it turns out to be recurrence. And if not, it'll be worth getting a definitive answer once and for all from the mediastinoscopy. -Dr. West Quote Link to comment Share on other sites More sharing options...
neilb Posted March 1, 2007 Author Share Posted March 1, 2007 Thanks to all of you for your advice. Unfortunately, the news continues to be less-than-good. I had the mediastinoscopy on Monday, and the nodes were positive (and of the same type as the original cancer). So, I have two or three malignant nodes in the mediastinum, as well as perhaps one or two in the neck. I saw the oncologist today, and I will start chemotherapy next week. I've been offered two options: one is Carboplatin, Taxol, and Avastin. The other option is a clinical trial here at the University of Pittsburgh Medical Center involving carboplatin, taxotere, and Velcade. I'm leaning toward the latter (partly because I have hypertension and one of the side effects of Avastin can be severe hypertension). I have to decide today or tomorrow. Thoughts? Quote Link to comment Share on other sites More sharing options...
2weimies Posted March 1, 2007 Share Posted March 1, 2007 It sounds as though you have been very proactive and on top of your care . I think that your quick action and ability to get medical tests done timely have helped to get you where you can help make a decision regarding your ongoing treatment.I have no idea what would be best for you .I also have hypertension and perhpas with additional or different meds they could manage yours better if you and the doctors think option #1 chemo was a better choice.I hope you respond well to the treatment and will be posting soon about NED! All the best. Quote Link to comment Share on other sites More sharing options...
Heather_T Posted March 1, 2007 Share Posted March 1, 2007 I am sorry it tested positive. Now you know and now you can fight it. I have know help with your chemo picks but do hope your chemo goes well. Quote Link to comment Share on other sites More sharing options...
Don M Posted March 2, 2007 Share Posted March 2, 2007 I am sorry you did not get good news. I know how disappointing it must be, but you are on a good treatment path. I really don't know which would be the better choice, but I have heard that the carboplatin taxol avastin is effective. I checked velcade on line and it seems promising too. I guess you may or may not get the velcade though. Don M Quote Link to comment Share on other sites More sharing options...
neilb Posted March 2, 2007 Author Share Posted March 2, 2007 I chose the clinical trial involving the two chemo drugs and Velcade. To clarify, Don, there is no placebo group, so I will be getting the Velcade as well. Thanks to everyone for your help and your thoughts. I start chemo on Tuesday.--Neil Quote Link to comment Share on other sites More sharing options...
trish2418 Posted March 3, 2007 Share Posted March 3, 2007 Good luck with treatment, Neil. I hope it treats you kindly and is super effective. Take care. Trish Quote Link to comment Share on other sites More sharing options...
Tiny Posted March 25, 2007 Share Posted March 25, 2007 Neil- Wishing you the best of results from your trial. Please keep the board posted on progress. Quote Link to comment Share on other sites More sharing options...
barbara5452 Posted March 25, 2007 Share Posted March 25, 2007 Neil, read my profile, Ive got a recurrence in my mediastinum nodes. I have 4 more radiation treatments to go (I will be through on Thurs.) had a total of 37 also have had chemo weekly with the radiation. Other than being tired it has been do-able. I still have 3 more chemos to go through but will be finished with everything on April 13th. I never lost my hair, minimal nausea in the beginning, no soreness in the eshopagus as I was told could happen. Ive done great and I too am will be 47 next month. Was glad Dr. West posted to this question that made my day. Hang in there Neil Quote Link to comment Share on other sites More sharing options...
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