Mediastinal Lymph Nodes Enlarged

SandyAust

Hi! I have been feeling a bit shoddy for a year. I had a Chest CT with contrast. It shows I have enlarged mediastinal lymph nodes throughout my chest. Does anyone have any experience with this. I was diagnosed at 36. I am now 52. I was er+ pr- her2-.

I’m not super-stressed, but I would like others experiences, whether good or bad. Thank you.

Anonymous

Hi Sandy , last fall I had enlarged superclavical lymph nodes and enlarged lymph nodes in my chest area including mediastinal nodes. They were able to get a biopsy on the superclavical node which in my case , was a cancer recurrence . I had also been feeling sick , felt like I couldn’t take a deep breath and my general doctor kept telling me I had a virus. I would want a petscan (full body ) to see if anything else shows up. I have been on Ibrance and fulvestrant and have responded well ! My symptoms of feeling “cruddy “ quickly subsided as soon as I started treatment . My onc told me mediastinal nodes are challenging to biopsy so the superclavical node was easiest to get a sample .

SandyAust

Thanks so much for responding. Firstly, I am sorry that this was a recurrence for you. I have had sinusitis and bronchitis a while back but my lungs are clear, but apparently there a numerous enlarged nodes. I am not sure if the chest CT covers the supraclavicular area. I thought that was above the collarbone? The respiratory physician is testing me for sarcoidosis and also mentioned a biopsy, but I think she is going to rescan first.

My GP has also been dismissing me. Do you mind telling me how else you felt cruddy apart from the deep breath issue. I also have had problems taking a deep breath and feeling nauseous. I just thought it was bacterial infections due to allergies. I too have had the “it's a virus!". It annoys me a bit.

I am glad you a feeling less cruddy and would be grateful if you could describe any other symptoms.

Edit: The supraclavicular area is clear, but I have numerous swollen mediastinal nodes.

KBeee

Any doctor that dismisses you should be dismissed BY you. My first oncologist dismissed my symptoms, which were a recurrence. Definitely get a biopsy to determine if this is sarcoidosis or a recurrence. You definitely need answers. Keep us posted. Don't hesitate to get a second opinion as well.

SandyAust

Thanks KBeee. I love the way people look out for each other on here. My GP is a bit dismissive because she has treated me for depression and anxiety previously. I pushed to get the tests as I thought I had a problem with recurrent infections. Unfortunately, these enlarged lymph nodes were not what I was expecting. The respiratory physician, who. I had my first consult with today seems very good. She listens and has ordered a lot of blood tests. She is trying to exclude sarcoidosis. I think if that comes back negative, she is planning to rescan and then biopsy. She is also concerned about lymphoma. I made the breast cancer link and although she said it’s not likely, I feel like she knows it’s a possibility and we are working our way through a process.

It will be interesting to see how my GP is about all this. She helped me through a bad patch with depression a few years back, but I think doctors sometimes tend to put you In a pigeon hole.

Anyway, I have been through this before, when I was 35-36. It took me three doctors, 15 months and two mammograms. One minute I was told I was having too many mammograms and the next I was booked in for a mastectomy.

I am not panicking, but I think a recurrence is a possibility now. It’s not what I was expecting, so I will have to see how this pans out. I trust this specialist and if things go bad, I will get a referral to an oncologist.

Thanks again ladies

Anonymous

KBee and Sandy - I agree about dismissing dismissive doctors but when you are in the trenches trying to get answers, it is really hard to find a new doctor! Statistically, I had a "low chance of recurrence" per my top rated cancer center: stage 1, node negative, CMF Chemo due to oncotype of 23 (grey area), radiation AND 7 years femara. Never had a recurrence in my breast - beautifully clear mammograms including one in october 2019. My oncologist retired in 2015 so I saw a different oncologist at my NCI cancer center and then it was recommended that as I was 10 years out in 2018 I would be seen by their "wellness clinic" at the same center, same imaging etc but meet with an oncology NP - due to my low chance of recurrence.

It is important to note that I rarely get headaches and rarely get nausea in real life. SO SORRY THIS IS REALLY LONG!

Here were my symptoms:

Sinus pain (left side only) and/or ear infection and had tinnitus in my left ear which I have never experienced. july 15, 2019: I called and got an appt at my regular doctor office and the doctor (not my gp) said the ear looked fine, could be a virus, if it persisted see an ENT (ears,nose,throat doc) and they gave me a referral. I was going out of town so went on our trip and the symptoms continued although I did not have pain when flying. When I returned I called the ENT and got an appt for Sept 7, 2019. (first appt available).

ENT Visit: The ENT gave me a hearing test, and examined me. I want to note that all doctors felt my neck glands and no swollen glands were noticed! ENT didn't see anything, hearing test was generally fine, tinnitus "happens" and he thought I had TMJ which was causing the sinus headache and weird pain on my left side cheekbone area. I dont grind my teeth, but called the dentist. No signs of TMJ but he makes me a mouthguard that I start to wear at night, which doesnt help.

Left side sinus headaches: persist and get worse when I am lying down (sleeping). Occasionally wake me up with intense pain to the point that I have to vomit, then pain goes away. Super scary and weird. I see my GP again and she tells me that I have a virus. new symptoms:

Persistent light cough and can't take a deep breath:September 10, 2019: I start having a consistent and annoying tickle/cough. It is not deep. It is noticed by my co-workers. It reminds me of my mother's reflux cough (I don't have reflux). I see my GP. I also can't take a deep breath but all my doctor appts my "lungs are clear and pulse oxygen is good". I remind the GP that I had breast cancer in 2008 and would like an MRI (I have started thinking I have breast cancer in my brain). She scoffs at me and says there isn't enough reason to order an MRI and my insurance won't pay for it. I tell her I will pay for it. She dx me with "reactive airway disorder" and prescribes asthma meds. They don't help.

Sept 17, 2019: I start having a headache at 10:30pm when I went to bed and panic. My husband takes me to the ER - we are there for hours but they do a CT scan on my head, nothing found but decide I have migraines and give me a pain prescription. We get up in the morning and I find I have completely lost my voice.

Sept 18: Laryngitis and it feels like my throat is swollen (hard to drink water) but we are flying to visit my Mother in law so I suck it up and get on the flight. I feel relieved that my head CT was clear. Call GP - still dx virus, come in when you get back home. Cough seems better at this point. My brother in law prescribes antibiotics for the sinus issue.

Sept 25, 2019: See GP and call my cancer center asking for an appt and scans. Cancer center tells me GP needs to order scans but I get an appt on 10/2. GP sticks to her virus story and once again, I take comfort in my clear CT scan.

10/2/2019: Cancer center mammogram and exam. Mammogram perfect, Oncology NP listens to me recap all my symptoms (I can barely talk as laryngitis is still terrible). Feels my neck and nothing is noted, once again have "clear lungs and good pulse". I am now sleeping upright to avoid the headaches and weird pressure in my chest - NP agrees with GP that this is viral.

10/10/2019: Nothing is getting better, I start calling new ENT's for my laryngitis because the ENT I saw in Sept can't get me in until the end of November. A scheduler at Univ. of Wash medical center takes pity on me as I can't talk and gets me in to an ENT to look at my larnyx.

10/20/2019: ENT is very nice, listens to my "story" scopes my larnyx and notes the LEFT SIDE IS PARALYZED. I am not a doctor, but now I have left side sinus headaches and left paralyzed larynx - had left side breast cancer in 2008.....hmmm. She is not alarmed but THANKFULLY she orders a CT of my neck.

10/25/2019: Neck CT completed, she calls me and says there are swollen lymph nodes pressing on the laryngeal nerve causing the paralysis. Need a biopsy. How many nodes, I ask - "too many to count". I call my cancer center NP and am, of course, agitated. Requesting biopsy - they try to push me on ENT as she needs to order the biopsy. They are at the same medical institution. ENT orders biopsy (I really push for a fast appt).

10/28/2019: Biopsy of superclavical node. Most of the neck nodes are too deep to biopsy. This large superclavical is still hard to reach. Wait for results. NOT ENOUGH TISSUE TAKEN.

11/08/2019: Another biopsy,this time they get extra samples because I ask them to. Breast cancer is confirmed.

11/08/2019: NP ordered CT of chest/abdomen and pelvis - no other mets found.

11/12/2019: Bone scan ordered by NP who is also setting me up with an oncologist.

11/15/2019: FINALLY meet with Oncologist. She orders tests to see if mets are anywhere else.

11/19/2019: Petscan of body plus MRI of brain to see if mets are found elsewhere. none found.

11/22/2019: Oncologist appt,she had already called me to review pet and mri (no additional areas noted) and we start fulvestrant/ Ibrance starts the next week.

I am working full-time during this. I also want to add that I am very persistent and generally a great advocate - this experience was so disappointing, and so frustrating. I pushed HARD for every appt, had to push for quicker biopsies with the medical center. Once I was back with an oncolgist, biopsies and scans are scheduled immediately. Super responsive as they should be.

GOOD NEWS: I have had a great response to Ibrance and fulvestrant. My symptoms disappeared within days of my first fulvestrant injection. Quarterly pet scans show dramatic reduction in 3 months and "no evidence of active disease" at 6 months. Next scan in October.

add'l info: while I was waiting for biopsy results there was some discussion that I could have lymphoma but the biopsy confirmed breast cancer, same er/pr positive and h2 neg.

edited to add: while I wait for the second biopsy I am freaking out so a friend who is an oncologist (too far for me to work with) tells me to fake rib pain and go to urgent care to get an xray, which is all clear. He also prescribes antivan. I also have a new GP who listens to me.

NorCalS

Aprilgirl1,

Thanks for sharing your story. It is really helpful. I feel frustrated for you and I hope you do not have to go through that again with your health care providers

LillyIsHere

Aprilgirl, I can't believe cancer returned after 11 years! This disease is so scary and stubborn. Thank you for sharing your story. I have found similar experience with well known cancer center when it came to navigating the system and trying to get appointments.

Stay NED until you are a very old lady.

Anonymous

Thank you Lily and NorCal - it was an awful experience ! I am a really good advocate and could not believe how I was treated . I am a good communicator and have never been one to go to the doctor with unfounded concerns. It was really hard for me to get past my disappointment in both my GP and Cancer Ctr . Having stage 1 with no node involvement seemed to make all doctors treat me as if my risk was minimal (based on my treatment ).

If I can help any of you to push for scans and biopsies, I am happy to share my story

SandyAust

Thanks so much for sharing Aprilgirl. Our stories have some remarkable similarities. I have also seen an ENT. I honestly thought all this was allergy related and the allergies were leading to recurrent infections. My cancer stats were similar to yours. My tumour was just under 2cm and Grade 3. I also had 0/3 nodes. ER+ PR-ve Her2-ve. I was 36.

I am so glad you are responding to treatment.

I feel I have been to the doctor a lot because I have felt constantly sick. However, that is no excuse to dismiss me. The last time I saw my GP I said I was worried about being dismissed if this latest scan came back normal. I said I went through this before when I was 35-36. She said “we’ll see.” I am the one who asked for the CT. She wouldn’t request contrast and didn’t put my breast cancer history on the request form, I told the radiographer my history and she said, “I am going to use contrast.” What a gem!

I was expecting more bronchitis, not enlarged lymph nodes. My lungs are clear. I am hopeful that the nodes are enlarged due to having been chronically sick. I have feeling I also have “too many to count” as the report said “numerous” rather than a specific number. I am going to keep pushing. If they aren’t gone by the next scan, I will be having a biopsy. My specialist, a respiratory physician, seems very good.

For some reason, I think it will be ok, which weirdly makes me a bit stressed, because that is what I thought 16 years ago. I knew there was something wrong with my breast back then, I just didn’t expect it to be cancer!

Anonymous

Sandy, I hope your mediastinal nodes are enlarged due to them doing their job as you have been feeling sick . I do think that once we have had cancer, our doctors should give us the benefit of the doubt and increase monitoring in general . Clearly , in my case, giving me mammograms didn't help as they have been perfectly clear . The cancer didn't come back in my breast! Although I was node negative in 2008 a few cells escaped back then. Please let us know how you are doing ! I would push for a full body petscan. You and I were also both dx premenopausal which is less common . I was 44 at my original dx

SandyAust

Thanks Aprilgirl. By the way, the Respiratory Physician said I could have a Pet/CT if I wanted one. She brought it up, not me. I am going to wait for the bloods to come back and take it from there. I will keep you updated.

Anonymous

That is great news ! The Respiratory Physician sounds like a great doctor

SandyAust

Hi Aprilgirl. I thought I would give a quick update. My doctor is going to biopsy the lymph nodes. I am not sure when yet, but hopefully in the next couple of weeks.

If anyone else has experience of mediastinal and Hilar lymphadenopathy, I would appreciate any information you feel happy to share. My supraclavicular nodes are clear

Anonymous

Hi Sandy, let us know how your biopsy goes. Ive been thinking about you and hope you are doing well!

SandyAust

Hi Aprilgirl. I am at home resting after having the procedure this morning. A bit of a time difference here in Australia. The doctor who did the biopsy is a colleague of my Respiratory Physician. When I spoke to him a few days ago, he said he thinks the results will come back normal. Anyway, as I was coming out of the anaesthetic I heard the nurses discussing a lesion and six biopsy samples. I asked them about it when I was fully awake and they said yes there were six samples taken but no one mentioned a lesion, Hmmm...I will have the results in a few days and I am feeling confident things will be ok. It will be ver good if it’s not cancer, but I am keen to find out why I feel so shoddy.

Thank you for your concern and I hope you are doing ok. I will post as soon as I hear.

Anonymous

Hi Sandy (waving from Washington State!) I am sure it is a relief to have the biopsy done and it's so great to hear that the Respiratory Physician thinks it will come back normal. It will be good for you to get results and I hope it helps the doctors figure out why you haven't felt well. I am doing great, thanks for asking. I hope you start feeling better soon!

SandyAust

Hi AprilGirl. The specialist who did the biopsies last week called me today. It’s not breast cancer or lymphoma. It appears to be sarcoidosis. I am just relieved to have an explanation for my symptoms. Thank you for your support, and also, thanks to the other ladies who commented. I hope things continue to go well with your treatment and that you have many years of NED. Take care. I will keep in touch

Anonymous

Hi Sandy, it is a relief that they have results and it is not cancer ! Now they can treat the sarcoidosis and hopefully you will feel better soon! Thank you for the positive energy towards my hopeful continuation with "Ned". I have a scan next week:)

SandyAust

Hi Aprilgirl. I just popped in to say I hope your scan went ok. Thank you for your support. I think of you and how kind you were to share your experience.Congratulations (seems the wrong word) on approaching one year. May you have many more. Take care, Sandy

Anonymous

Hi Sandy - thanks for checking in! My scan results were No Evidence of Disease - again:) I am thrilled. I also feel so much better than I did a year ago, when I was had been so sick for so long doctors kept telling me I had a virus I know know anything about sarcoidosis but hope that whatever they prescribe is working well and you also feel better! I learn so much from this message board and appreciate the support.