Anyone with enlarged mediastinal lymph node?
I was diagnosed with IDC 11/14/21. Surgery has not ben completed but biopsy showed HR+, HER2-, grade 1. Recent PET/CT showed enlarged (2.5cm) superior mediastinal lymph node. There was no metabolic activity shown on PET or, FDG uptake was low enough to classify it as non-malignant. The Radiologist made no recommendation for biopsy but I am pushing back on that. If it's a false negative that would classify me as stage IV and without treatment my odds would not be good. Please advise if you have had anything similar. I'm freaking out.
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I'm Stage IV and that is one of the locations where cancer was found. There's at least one other person here with a similar diagnosis but it seems to be somewhat uncommon. Are you doing chemo and radiation?
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Thank you for responding ParakeetsRule. I’m not sure what the treatment plan is yet. Since that was found I have decided to go to a larger city for treatment. I’m waiting for them to call me back with an appointment. Did you have the mediastinal node biopsy?
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No, I haven't had a biopsy. It's just one of several locations with mets so there's been no particular focus on it. If it was the only location they flagged I'd probably want a biopsy though! A second opinion might be a good idea too. I shared your post with the other person I know of here who had mets there so hopefully she'll have more thoughts.
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Any news yet? No worries if you don't feel like updating, but I hope you're doing okay!
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Thank you for reaching out. I decided to get a second opinion in a larger city so I scheduled an appointment at the Markey cancer center in Lexington. I had my appointment today and they set up a consultation with a thoracic surgeon to discuss biopsy options. I see them on the 19th. I’m hoping it’s easily accessible for biopsy as the thoughts of a thoracotomy are frightening to say the least. I’ll be sure to stop back and give you an update after my appointment. Hope you are doing well! Take care.
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Hello!
This is where my cancer metasticized, mediastinal lymph nodes....one of the places.
I'm glad you are getting a 2nd opinion and going in to discuss a biopsy. I did have a biopsy done by a thoracic surgeon. It was a day procedure and fairly easy compared to other procedures I've had. I was asleep for it and after there was minimal pain. I thought I'd be able to work when I got home, lol! I was too groggy and slept the rest of the day and night.
Don't be nervous about the procedure itself. It really wasn't bad.
Please keep us updated. Wishing you all the best.
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Tangandchris ParakeetsRule Thank you both for responding. I have been in a bad place mentally. The thoracic surgeon they referred me to said my node is in a very risky area for biopsy and scheduled me back in 3 months for another scan. Since I didn't get a definitive diagnosis of metastasis,my medical oncologist has decided that it won't be included in my staging and therefore she does not intend to prescribe chemotherapy or proton radiotherapy. I am beside myself. I have sent them multiple research studies on my specific presentation and they won't hear me out or even read them. I feel like I'm going to be under treated and end up stage IV because of their stupidity. I guess when they say you are fighting, they don't just mean the cancer.
They diagnosed me as stage I on my chart, but I have an enlarged (2.5cm, round) mediastinal lymph node that they refuse to take into consideration. I am beyond frustrated, extremely scared and decidedly pissed off!!
This is the latest study pertaining to my case. Crickets from my oncology team….
Well….Not allowed to post the link…. Google:
Outcomes of curative-intent treatment for breast cancer patients presenting with sternal or mediastinal involvement
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Short-stack, I've had other cancers, and one of those showed an enlarged node on a follow-up CT. Then I had a PET scan, and that verified the size. Next was a biopsy - and - it was benign. That was three years ago. The node still shows up on scans, and I had another PET scan last year, but that showed it hadn't really changed since the previous scans. So it seems some nodes can be enlarged without it being cancerous. I hope that's the case with yours.
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hi!
i had several lymph nodes light up (including one mediastinal node ) 5 weeks after my 2nd covid vaccine last July. I had a follow up scan in October which showed regression in SUV and the mediastinal node was gone. Another scan just recently , and lymph nodes showed more regression. Doctor concluded that they were all reactive nodes and not cancer. hope yours is too
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While the waiting sucks, three months isn't very long in the breast cancer world. Waiting a few months doesn't usually affect the treatment plan either. If the node is too risky to biopsy there might not be any option other than to see what the scan shows in a few months.
If you want another opinion, maybe try reaching out one of the doctors or hospitals that did the research in the studies you've found.0 -
Thank you ladies. I spoke to my radiation oncologist about it today and he’s going to review the research. I told him that since malignancy can’t be ruled out,I’d feel more comfortable taking an aggressive approach. Even if that means subjecting myself to possibly unnecessary risks. That I could live with. What I could not live with is taking a less aggressive approach and it resulting in a poorer outcome. Make sense?! Or am I crazy?!
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Not crazy!
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ParakeetsRule,
THANK YOU!! :
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shortstack, I am being treated with curative intent for sternal and mediastinal involvement. My cancer is in the lower inner quadrant, so basically right by my sternum. Thorasic surgery for bone biopsy or intermammarary nodes that lit up was deemed not worth the risk, so my team decided I am stage IV but with aggressive treatment. Meaning I get it ALL. Been on AI letrozole since last March. 6 months of Ibrance showed no progression on my bone scans 😁 (Insurance doesn't cover PET). Mastectomy pathology showed the cancer was 'breaking up'. I get 34 radiation treatment starting March 10 and then back on Ibrance for as long as... I am willing to throw it all out there in the hopes it slows things down for a long while. (But I am still awaiting on my last Mammo/US O on the other side. KBL and Exbrnxgrl reminded me sometimes results take a while...)
Not crazy. Keep us posted
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Dancemom
Thank you for responding. Sorry to hear that you are stage IV. Hopefully your treatment continues to keep things under control for a long time. I don't know why they have decided not to include my mediastinal node in the staging. Possibly because it is such a rare presentation. My breast cancer was also medial. Upper inner quadrant and very close to the ITN nodes. I'm hoping someone will actually read the research I've sent and decide that I do need the aggressive treatment!! Gahhh! I feel like no one is listening to me and it's so frustrating.
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It is a rare presentation from what I read. it seems there aren't as many of us with the cancer in the center. I am actually in a weird place with it now. I am in a large cancer center and am apparently the subject of many of their interdisciplinary conferences. I now know that all the recommendations are made after meetings with many many specialists. (MO said about 40 were there last time) My surgeon was hesitant on doing the mastectomy after the stage Iv diagnosis, but agreed to do it with the support of the other teams. Then she also wasn't totally on board with radiation since the meds are keeping things stable. My MO felt radiation is a good idea, but only to chest wall, internal mammary nodes and extra sternum zaps. RO isn't comfortable NOT including all the usual nodes up in armpit and collar, even though nothing has shown there. She feels it is such the normal spread route, she can't NOT treat it. I am agreeing to this ultra aggressive treatment because she was so adamant about treating it all, but this is my first time a year into this that I am hesitant.
So we are the 5%. I am at a major cancer center and have wholeheartedly agreed that ALL my records for this are available for future research. There just isn't much out there. I don't know what the right answers are, but I hope you are able to find treatment that makes sense to you.
Time helps, when it's available. When originally scheduled for mastectomy before the rest if the diagnostic scans and stage 4 diagnosis, I said implant. 9 months to think and read changed my mind to do diep when I am ready for that.
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dancemom
I’m so glad you are going along with the aggressive treatment. I wish I lived in a bigger city and had access for more people to weigh in on my case. What you said is right. We are the minority. We can’t allow them to put us in the 95% box! I’m hopeful that my radiation oncologist will actually read the studies I sent him. If he does, he may be able to advocate for me. I pray that’s the case anyway. Wising you all the best as you navigate these uncertain waters. <
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Short stack
Have you considered a 2nd opinion?
Also I think you can request a 2nd opinion from some of the major cancer centers and they can review your medical records without you having to be there.
Either way, if you are not comfortable with the plan your current medical team has, you should always get a 2nd opinion.
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tangandchris-
Thank you for your response. I’ve been at my wits end as I’m scheduled to start radiation on Monday and there’s no going back. I was so stressed over it yesterday that I decided to send a “blind” email to one of the co-authors (Dr. Benjamin Smith)of the study I shared. I never expected him to read it or reply. However, within minutes of me hitting send, my phone rang. It was him!! Needless to say, I was in shock! He advised me to abandon my current treatment plan and get a 2nd opinion. He offered to see me next week but also provided alternate options if that wasn’t feasible. He stated that he’s seen other people with this who weren’t treated aggressively and they died because of it! All of my research said the same. I will be going to see him in Texas ASAP!! Thank you all so much for being here for me! I appreciate each of you!
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YAY! So glad to hear you were able to reach him!
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ParakeetsRule-
Thank you! I’m still in shock! There are great doctors out there and he’s definitely one of them! No insurance or debit cards involved. Just a heartfelt call from a caring doctor who doesn’t know me but wants the best for me! Who knew?!
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Update: I am scheduled with Dr. Benjamin Smith at MD Anderson in Houston March 8th-10th! He stepped in and expedited my appointment, otherwise I wouldn’t have gotten in until the end of May! God is great! I’ll post an update after my visit. I hope you all are doing well. Many Blessings to each of you!
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Well, just got home from MD Anderson. Here’s the concerning part of the chest CT. “Bilateral nonspecific pulmonary nodules and enlarged right upper mediastinal node. Metastatic disease cannot be excluded“ It also showed a prominent right hilar lymph node measured at .9mm. They are holding off on updated staging pending biopsy of the mediastinal node. I am flying back for that once scheduled. Seriously stressed.
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When is the biopsy? Hopefully you don't have to wait too long! And I'm glad they are doing that for you instead of waiting like your other doctors wanted to.
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