Mass in Anterior Mediastinum & a Lung Nodule & docs on vacation
Was hoping someone might be able to share their experience or make me feel a little less on my own since my oncs are on vacation and the thought of going another week or two with this uncertainty feels like it may push me over the brink... I just need to be able to share with people who understand--and who appreciate how difficult the waiting is!
A few weeks ago I was in for my herceptin infusion. I'd been having a lot of trouble breathing for about 6 weeks or so, but by that point, it was worse (still is). Not like when I have bronchitis or pneumonia, but like there was/is a weight on my chest and I feel like I can never get enough air or take a deep breath. After examining me and saying my labs weren't very good, they didn't give me the herceptin and sent me down to the ER instead. They said I needed blood and that might help, but that it seemed like there was something else going on--maybe a PE since I just had surgery last month and I'm on tamoxifen.
They did a chest CT in the ER and quickly ruled out a PE, but said that the scan showed "some things" and they wanted to admit me. I was taken off guard & declined. In retrospect, I probably should have stayed, but I'm sure you all understand not wanting to! Plus, my little boys were upset that I wasn't home & didn't want me to have another hospital sleepover. They said that it appeared that I may have a partially collapsed left lung and that I either had pneumonia in that lung or there was some other process going on in there or maybe both. They also said there was a small nodule in the lung. For the rest of the details, the dr. said I'd have to follow up with my oncologist. So they kept me there on oxygen & monitors for another 5 or 6 hours of observation & sent me home with an antibiotic in case pneumonia was contributing to my issues. And told me to follow up with my onc asap.
My primary oncologist (at the hospital) was (still is) away, so I couldn't see her. That left my cancer center onc--and I wasn't even sure I wanted to tell him I had been in the ER. So I waited a week to see if things improved with the antibiotics (they didn't) & decided to pick the CT disc and report up to share with him.
Of course I read the CT report in the car and saw that in addition to what they said in the ER, there was also a 2.2 cm mass "that could be of lymph node origin" in the anterior mediastinum. When I was in with my onc, he said that since the ER report said "unchanged" after it described the mass and lung nodule, that they were probably ok. One word made it all ok!
When I got home, I googled it and thought maybe he shouldn't have been his usual dismissive self, especially since I had chest wall invasion and a 10cm+ "area of involvement" with multiple tumors at diagnosis--features that seem to make the anterior mediastinum not that uncommon a site for mets. But I figured that since it was "unchanged", maybe it was ok. But I just didn't feel right about it, so I thought I'd get my reports to set my mind at ease. I got a copy of the ER report which says that my last chest CT was in 5/2010, so this should be what the "unchanged" relates to. But when I got the 5/2010 report from a few weeks after diagnosis, it says my lungs are clear and there is no mention of the mediastinum. I also had a chest CT in Aug. 2010 (different hospital) to see if chemo made me ‘operable', and a planning CT for radiation this January, so I decided to get those too. January's doesn't say anything, and the 8/2010 report clearly states that my lungs and mediastinum were clear. And free of lymphadenopathy. So maybe the "unchanged" on the ER report was a mistake? Or maybe it really was there on the 5/2010 CT and they failed to mention it in the report--and it disappeared with chemo last year & is back now?
I called my onc's nurse to relay what the reports said on Monday when I got the last one, but she said he's on vacation for the holidays now and my hospital onc is still gone until the middle of Jan. I generally don't speak up with my doctors, so being persistent with something like this is fairly uncharacteristic for me, but that's part of the reason why I'm here... Should I let this go and not worry about it?? I don't want to seem like a hypochondriac, but I am concerned, especially because I'm still having trouble breathing and get winded from just walking around the house.
Has anyone had any experience with an anterior mediastinal mass that turned out to be nothing--or something? Or the same for a lung nodule?
Thanks & sorry for the loooong post. It wasn't the quick one I intended!
Comments
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I don't think you should let it go, expecially since you are having a hard time breathing. I wonder why the new report said unchanged and I would have one of the doctors explain it, with all reports in hand. I had a positive node under my internal mammary node, possibly a medistinal node and it did cause a little bit of discomfort and a cough. Once chemo wiped it out all that went away. So I am thinking you should not wait and see, if it is something it needs to be treated so you can feel better. Looks like you have been through alot, my heart goes out to you.
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wow, you are goooooood and soo very on top of your scan reports. Yes, I would mention it to your doctors. What you are saying is making perfect sense to me and I would say exactly what you have said in your post to your doctors after the Holidays. I hope you get GOOD answers soon.
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Gosh, what an ordeal to go through without having any good information from your oncologist's office. This is a hard time of year to get immediate attention since everyone is on vacation. It is hard to tell what is going on because it seems like no one who "knows" you has had a chance to talk through what all this means...like you aren't getting a straight answer.
So, from what you've said, it seems like the most important scan is the recent CT in the ER. The "unchanged" word is comforting. I think if I were in your shoes I would want answers from my onc to figure out what is going on and if additional scans are needed.
How are you feeling? Still short of breath? I'm no doctor, but based on what I've read over the years on the boards, when gals have lung mets, the shortness of breath is caused by pleural effusion (fluid build up), not by the mets themselves and they would have seen that on the scan, so you can take comfort that they didn't see that (if that makes sense).
Hope you can meet with your onc soon to get more info. WIshing you the best!
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Thank you all for taking the time to post, especially on a busy holiday weekend...
bak94, thank you... The only thing I can think is that it was on my pre-chemo CT and they just failed to mention it, because it certainly wasn't on the post-chemo CTs last year, so maybe it just grew back after January?... Or maybe the ‘unchanged' was just a typo in the rushed ER and it grew new this year? I'm not sure which is better?! Or if it even means anything that it's there? Thank you for telling me about your discomfort and cough--the breathing and discomfort have been disconcerting for me... I'm glad that chemo was able to knock yours out, but so sorry you are dealing with a recurrence... How are you healing from your bmx?
Thank you, Kathleen... I was never on top of the reports before--thought it would seem like I didn't trust my docs or I was paying "too much" attention to my health if I asked for them before, so I never did. I've only started to ask for some things recently & it's been very enlightening! I've been surprised by some of the things they didn't tell me along the way. Thanks for saying that the things I wrote make sense to you--I needed to hear that--I've been feeling a little nuts, even though it makes sense to me! I'm sure my regular onc at the hospital will understand, it just feels like so long until she's back (Jan. 16).
Nancyh, thank you... I am still short of breath... Thank you for sharing what you've learned... That does make sense. My onc did say that there was fluid in that left lung, but he didn't use the term effusion, so I will take that as a good sign. He pointed to the fluid "and such" in that lung when he was looking at the scan on the computer screen, but said that it was possible that this could have been caused by radiation (that I completed in March). He said he really couldn't be sure (he doesn't read CTs) and said to consult with my radiation oncologist (also on vacation for a couple of weeks) about that one. It sounds like I should be comforted by the fact that he didn't use the word effusion--and maybe the lung changes are just from the radiation... Thank you for sharing your knowledge! I told my husband that I posted my question on the board this morning and he said that I was crazy to look for answers here & to just wait for my doctors to return... He just doesn't understand the "comfort"--not sure if that sounds right!--you get from hearing other people's stories, good or bad, and from hearing the combined wisdom of women (and men) who've been through similar things. Or how difficult it is to wait for answers! Thank you for helping me...
Wishing you all very happy holidays... Thanks so much!
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Hi Mom......just reading this, and I am so sorry about your scare. Having said this, I think you should get to the bottom of things next week, once you are past Christmas. I think you will feel better, and if something needs attention, it will happen promptly.
I switched oncologists towards the end of chemo. My first one burned out (long story, but he really was burning it at both ends) and left the hospital where I was being treated. So I went through an interim period. Everyone who subbed for him was just fine.
Having said this, I can tell you that radiation left me with some lung distress. Not something anyone would normally have noticed, but I was doing endurance cycling.
But please go and get checked out. Meanwhile, enjoy your Christmas. Important for your twins.
I am just getting over the creeping crud. Nothing serious, but what if you have an infection? That is why I am thinking you should go for help. Feel better and Merry Christmas. - Claire
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I hope you're enjoying the holiday weekend and are successfully thinking about other things!
I'd agree with the above--just because your doc is on vacay doesn't mean you can't be seen by someone--worse comes to worst you could go to the ER again and let them admit you and get to the bottom of it. Maybe next week while the boys are home playing with their holiday haul! I'm worried about you since you said you're still having trouble breathing. Take care!
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Hi Claire, thank you for sharing your experience... I'm hoping that the lung stuff is just from radiation... I did enjoy Christmas with my boys, thank you. They are always a good distraction! Sorry you haven't been feeling well... I don't think I have an infection, but I suppose anything is possible--though I've had two rounds of antiobiotics in the past 6 weeks and they didn't seem to affect whatever this is... Thank you for your help & I hope you are feeling better & that you enjoyed your Christmas, too... :-)
Hi profbee. Thank you for your response. I'll keep what you said about going back to the ER in mind, though I really don't want to!--things don't seem too urgent, but you're right, I'm sure it would probably speed up the diagnostic process if I let them admit me. And, like you said, the kids would probably be so busy playing with their legos and other loot that they wouldn't even notice I was missing! :-) Thank you for your input & I hope you had a good holiday weekend, too...
Anyone else have any experience with anterior mediastinal masses? Thanks all!
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Hi, I had a number of lymph nodes in the mediastinum that were cancerous. They were detected by a PET scan, imaged by MRI, and biopsied by a thoracic surgeon to determine what they were. I was told they could have been sarcoidosis. I didn't want to go through with the biopsy if it was unlikely to be anything other than mets so I asked the thoracic surgeon if he had seen hot spots on a PET turn out to be sarcoidosis and he said that he had. Have you had a PET scan?
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Hi April,
Thank you for sharing your story... I've only had one PET (5/2010), the month after diagnosis. I have 2 oncologists--one at the hospital, one at the cancer center here. My cancer center onc (who returns from vacation next week) doesn't like to do them, while my hospital onc (who isn't back until the 16th) suggested that it may be time for a second one (due to my symptoms) when I saw her last (before this chest CT). It sounds like I should go for the PET if she offers one again when she returns.
Can I ask how your biopsy was? I've heard it's a difficult surgery? Thanks for sharing with me...
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Certainly. I just hope this all turns out to be irrelevant to you and your doctors have good reason to believe whatever they are seeing is nothing. I've had two PET scans. One before chemo and one after chemo but before surgery. The biopsy was done as part of my staging.
There were two thoracic surgeons involved. The plan was to try to biopsy one of the lymph nodes, which I was told is difficult to do. Apparently, it's hit or miss. They were actually unclear why my MO was asking for a biopsy. Apparently, it's not that common.
They performed two procedures. The first was a bronchoscopy, which could reach nodes along the airway and biopsy the lung. The second one was a robot assist surgery (Da Vinci I think) that went in through my ribs from the side. This one could reach nodes next to the aorta.
The robotic procedure had four entry wounds. The worst one was for the chest tube - it took weeks to heal probably because I was undergoing chemo. The surgery was performed the day after I started chemo. The surgeon actually removed the enlarged lymph nodes. The bronchoscopy found cancer in lymph nodes (but not my lung) as did the robotic procedure. -
Hi April,
My goodness! I'm so sorry you've had to go through so much!! And sorry that you had to recover from all of this while going through chemo. That must have been a really difficult time...
Thanks so much for sharing your experience--I hope it's all irrelevant, too, but I would rather know what they are talking about if they do suggest something like this. One of the nurses mentioned the possibility of a biopsy when I called to find out when my onc was coming back, but said she really didn't know what they'd decide to do, if anything, because she hadn't seen my scan. It's very helpful to have an idea of what a biopsy might entail if my onc does suggest this--he's not big on questions unless you are specific, so at least I'll know what to ask now if the subject comes up.
I just had a Da Vinci ooph last month... I thought that was a more difficult recovery than I had anticipated, but yours sounds far more complicated... No wonder two thoracic surgeons were needed. I hope your MO had a good reason for putting you through so much! Yikes!
Thank you so much...
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