I’m so worried about my lymph node that is now really bulging and scaring me. Not a good feature I am sure but it always so tiny now sooo much bigger. I am wondering if anyone has had radiation or surgery? I just want this scary thing gone. I peaked at Dr google and it said Poor Prognosis and now I am just so scared. Anyone else have this?
Anyone have lymph nodes in neck and w... - SHARE Metastatic ...
Anyone have lymph nodes in neck and what did you have done?
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Bettybuckets
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Google will get you !! Don’t look that stuff up only makes you crazy
So true but I am also worried by how few people have replied… I think this is a bad feature.
I so understand you googling Bettybuckets. It's so so so scary when things happen and we can't help feeling like it might just keep going. I have no assurances, nor any should or shouldn'ts. Just know I'm thinking of you. ❤️
Have you been to your oncologist yet to let him/her know what is going on? At least call the nurse line and let them know about any changes. I had a friend who had the same issue, she had surgery and is doing great. Please don't remain in a scared state, that only gets worse! I know its sometimes hard to do but please try to think positive. The mind can be a powerful tool to our benefit!
🌺
Thanks my friend- I am anxious in a way that I never was even finding out about MBC… now it seems like it is going to get worse very soon.
good morning Betty. so i am curious where your lymph node is located in your neck and whether it is 'firm' or 'soft' and how big? and is it painful to touch? i want to see how similar we are before talking about mine.
thinking of you.....
carole xo
and if i remember correctly, your oncologist is aware? and did he order a CT scan of your neck?
hi again Betty.
just waking up and needed some caffiene! so i have 9 supraclavicular (above the collar bone) enlarged lymph nodes in L side of my mid to posterior neck. i first noticed about 6 months ago by 'feeling' them under the skin as they were very small. they are still smallish but they have grown to where you can visably see them thru the skin. mine are very firm (hard as a rock) and are NOT painful to touch. i have had 2 ct scans of my neck (a couple months apart). they are confirmed to be mets! the largest one grew from 5mm to 9mm in a couple months time.....just short of one centimeter. i got the feeling from the report that they weren't clinically significant until they were larger than a centimeter, which mine almost is?
my oncologist has yet to mention any intervention.....meaning no excision and no radiation. she did offer that they were 'not good' but i need to question more at my next appt next month. i am just not sure if they are cancer 'sweepers' or cancer 'spreaders'? that is what i need to find out from my onc. but she did not seem alarmed. i did make the switch from letrozole to fulvustrant because of.
not sure if this helped or confused.....
sending hugs.....
carole xo
Hi Carol, thanks for writing back… mine was tiny but now Dr guesses today that they are 2cm! Hurt to touch and movable… I never heard about sweepers vs spreaders… he was not keen to blast with radiation but admitted the thr rad oncs will want to do that… and sounded like it would not be too much of a problem. But he wants to leave it so he can perhaps gauge how the new Verzenio is working. I am only 2 weeks in… after 18 months on Ibrance. He is hoping to get more mileage out of the class of drugs before switching to chemo…. Next up xloda if this doesn’t work. I told him I was concerned about having the lymph node left thinking that is how my cancer will spread… but he said that even blasting it away won’t stop my spread… it will just spread from my bones eventually… so he was fairly relaxed about letting it stay there just like yours. I would worry about radiation wrecking my salivary or some other vital thing so am not sure what to do so will just leave it for now. He is bringing me back in in 2 weeks to feel it again. Even though this thing scares me way more than my bones did, I am trying to be relaxed about it.. remembering that this thing has been there the whole time..
hi betty. it originally sounded like you only had 'one' enlarged lymph node but you just mentioned 'they' are 2 cm in diameter so does that mean you have two, or several? doesn't really matter, just curious. and you have had them since your diagnosis..,as you said 'this thing has been there the whole time'?
mine are 'new' in that they only showed up 6 months ago and i have had mbc for at least 4.5 years....probably longer. so this is my first experience with mets outside of the bone so i too found it a little worrisome. but not really that surprised.
what puzzles me is that your affected lymph nodes are 'movable' and painful to touch. very different than mine?? are they soft or firm? i researched as well and what i found is that several articles mentioned they are usually very firm, non-movable, and painless if the cause is mets. i also had 2 Ct scans that confirmed they are metastatic. did you have a Ct Scan....you didn't mention?
i guess what i am getting at is that maybe yours are not cancerous? lymph nodes can be enlarged and painful for other reasons.....but sure you already know that. but then your onc wouldn't want you to come back in two weeks if not mets. so i must be wrong/confused in my thinking....wouldn't be the first time...lol. either way, i agree on not wanting to radiate either.....too close to carotid artery and other 'stuff' for me to feel good about doing that.
it's always something....right? hope you can stay relaxed even though scary. and your oncologist is right....if the cancer is going to spread it will find a way....regardless of your lymph nodes! let's hope the verzenio does the trick for you!
and best of luck to you on Verzenio! hope it works for a very long time....fingers crossed.
hugs....
carole xo
hi again Betty.
so sorry....i was just reading another thread and you mentioned that you had a Ct scan and a BIOPSY of your lymph node and it is indeed metastatic. my apologies for questioning that.....so sorry if i offended in any way. i was going off the info i thought i knew but clearly didn't.
still hoping Verzenio zaps it....
carole 💛
Hi carol, no worries! I have such an incomplete understanding… when it was tiny I just was way more worried about the Mets in bones and wish I zapped this when it was tiny. I hope it shrinks too!
And yes from day one of MBC I knew this was a Breast Ca met.. I just didn’t realize that was very bad… I’m pretty scared suddenly.
betty... i am hoping to calm you a bit. deep breath. think about what your oncologist said....if the cancer is determined to spread, it will. and if not from the lymph node, then from the bone mets. so think about it your doc's way....why is the lymph node any worse? and then that is where the verzenio comes in.....to stop that spread from happening....no matter where the spread is coming from.
try to stop thinking about the lymph node spreading. and in place of that thought...think about the Verzenio WORKIMG and STOPPING that spread from happening! that is it's one job. it's a cancer killer!
easier said than done.
i too am hoping that the switch to fulvestrant will stop my spread as well. fingers crossed. same as you...bone mets and lymph nodes in neck.
sending a BIG hug....
carole 💛🌻
Thank you for reminding me we are in this together. My Dr is doing something out of the ordinary… leaving me in fulvestrant… but with the Verzenio started me on aromasin… so will get both anti estrogen.
If your onc isn't alarmed, try not to worry! I know easier said than done!
from what i have learned...hard/firm is sign of mets. soft and squishy not a sign. no pain is also indicative of mets. pain usually not present with mets to lymph node. carole xo
Hi Betty, when I found out I had MBC in 2019 it was due to an enlarged lymph node in my neck that was pressing on my laryngeal nerve, causing me to have laryngitis. It was a superclavical node. At the time, it was buried a bit and didn't feel enlarged but once I had a biopsy , it was palpable . It measured 1.5 x 1.3 cm. Long story short, it was one of many nodes local and distant that had breast cancer. I was devastated. I started on Ibrance and fulvestrant and so far they have worked well. It started shrinking and is no long evident on scans. I am hoping this will give you hope that the verzenio could work really well and shrink that node . Hang in there !
That is a good story thank you!
Interesting that you mention laryngitis… my voice has changed dramatically to sound like the garble of an old frail lady. Maybe from the node pressing on something?
That is exactly how it started for me ! My story like many of ours is a long one . However, I had stage 1 node negative breast cancer in 2008 and had completed chemo , surgery and 7 years of femara. When I started having some unusual symptoms for me I called both my cancer ctr and my primary care physician.(July 2019). Both insisted I had a virus :/ it took me months to get an ENT to scan my throat after she scoped my vocal cords and saw the left one paralyzed. Which led to the scan , which led to the biopsy. Initially , my squeaky and "hoarse" voice was intermittent . I lost my voice completely in September of 2019 and started cancer treatment in November . My voice stayed hoarse. New ENT in March told me my vocal cord had been compressed for too long and he didn't think it would improve . Luckily in April it started coming back and I now have my normal voice ! I still work and I talk A LOT so losing my voice was really hard (as is stage IV) so it's a real blessing that my voice came back . It was also a good sign that treatment was working !
Wow that is so hopeful… and explains my voice changes! I am not sure if treatment has worked so far as my lymph node has now grown to more than 2 cm. What treatments worked for you?
Ibrance and faslodex . In your case, the next tx could be the one that works well if this grew while you were on Ibrance . I was told the area of my superclavical node was not a good candidate for radiation as it could destroy my vocal cord and it was close to some major arteries . Have they ordered a new biopsy on this ? Sorry if you mentioned it , I can't remember . Make sure you tell your MO that you are having voice issues - and ENT can scope your vocal cords and see if they are not working correctly .
Such good advice… this was an issues for several years and continues to be… I will ask for ENT appt
Feeling this everyday now that it got so big after the biopsy, makes me anxious… when prior I was calm because all the bones were stable… but now he is saying next up chemo… this seems signalling the end of the easy time. What about surgery to get rid of it. I feel like it will kill me sooner than the bones!
In my case, the lymph nodes in my neck were too close to some significant arteries and I was told surgery and / or radiation would not be a good idea - best to get rid of them with systemic treatment . I'm sorry this is so stressful . Can you get a second opinion ?
April- what treatment worked? I’ve tried both CD 4-6 and next up chemo.. xloda. I feel like I’m blowing through snd nothing working while it gets bigger.
In my case, Ibrance and fulvestrant so far have worked . If I were you I would want the biopsy tested to see if you have acquired a somatic mutation , like the one that piqray works on (pik3? ) . I have heard good things about Xeloda. Hang in there !
Sorry you are worried but understandable. Having said that, please try to calm down and realize they have lots of tools in the tool box so you will be alright. Hang in there, thinking about you. I have never had lymph nodes in the neck but have had them in the lungs. Stopped them even though they where multiple.
Cheers, June S.
Hello dear- glad you have control of Those awful things in your lung!
Thanks for the reply. The lung nodules present no problems at all. Not even to the breathing.
Cheers, June S.
Well, funny you should ask. After2 months letrozole my tumour marker rate of increase is levelling off a little but i just emailed my onc today to say my neck node has palpably and visibly increased and I am v worried about it and while I realised it would be palliative only, is there any chance i could have it excised. (Its v near surface) . She has forwarded my question to the surgeons and said if the are not keen, RT may be option. I think I hate the fact its now visible. Hope you have an understanding doc. I felt a bit silly asking but at least she answered promptly and took my q seriously. Good luck! X
Well of course she should take it very seriously. I know they say it won’t make a difference but I wish I had asked them to removed at the very beginning when they were small… I should have voiced my fears that these things would be most likely to cause further Mets. And I was fearful that biopsing them would def lead to spread. So far they biopsies them twice to use as a surrogate for the bones. Most recent biopsy they stuck 7 needles in and out. Since then it has been misbehaving.
P.s. it is definitely worth putting the worry aside for another month as it was 2 months before my markers showed response to my change in med. I was so relieved as like you, my next option is oral chemo and I expect it will have more side effects.
Such good points!
Call your doc, could be nothing or maybe just needs to be watched. Whether it's completely nothing or something or something to watch - call your doc. You are already living with this. You are OK !
Keep in mind that we each have a very individual experience with this crazy cancer and what is best for one isn't necessarily best for all. That said, I had cancer cells in lymph nodes near my collar bone and arm pit. They were found by scans as I had started having trouble with the fine motor coordination in my right hand. ,My onc referred me to a rad onc, a wonderful man that I had great conversations with, and not just about cancer. Anyway, I ended up having ten radiation treatments to that area, and that was a very interesting experience! I focused on that, the machinery, techie stuff, and all the coordination it took! It was right around the holidays and it ended up being scheduled over 10 days in 3 weeks. I would not be nervous about needing rads in the future--the experience was not painful. I live in a rural area and my husband and I went to the 60 miles away city for the rads each day and I had the energy to go shopping and eat at much nicer restaurants than closer to home. I've had to have Occupational Therapy for my arm and hand and have definitely made progress--I can usually button my shirts without needing a button hook and can put my earrings one, signs of better coordination, This "little stuff" can sure be annoying! I've been told that itt takes nerves a long time to heal and I am trying to be patient, LOL, not always easy. I'm a long timer with MBC, 18 years and had only bone mets until about two years ago when some cancer cells were found in tissue blocking one of my ureters (tube between kidney and bladder), I have lobular bc and it often goes to non-typical places. Last winter, two tiny spots showed up on my cerebellum, and I had one session of the really focused radiation and cannot think of its generic name....it was successful, I've learned alot about focusing on the big picture and controlling what I can control, like keeping appts, taking my meds and not getting too upset over new stuff with the cancer. Not always easy but I want to live my life doing things that give meaning and/or joy. Don't know if any of this helps but I wanted to let you know that rads are not necessarily difficult.
Hi PJB that was hugely helpful… sounds like you have had a very long run at this thing. I really wanted to have a shot at a 10 year run with just bone only disease.. but my neck lymph nodes have been here since day one of MBC June 2020… I loved the past 2 years hoping Ibrance would go on and on. But now with the node jumping to 2cm… I’m having to be more realistic. My onc warned me the other day that we may blast through Verzenio of this doesn’t right the ship and go onto chemo… I think that is a sign he is really worried…. So I am too. But then I read your letter of encouragement and remember I need to just take one day at a time. Thank you!
Have you seen an onc who specializes in bc? If not, you might want to see one for a second opinion. If you're in the US, the top cancer centers are those designated Comprehensive Cancer Centers, most or maybe all are connected to medical schools, and they have very specialized oncs, the ones involved in major cancer research. Your own onc should encourage you to do that if you bring it up. Medicare has covered it for me.
Hi PJB- il I’m lobular too! The sneaky one… Plus they are seeing thickening on my ureters too.. csn you tell me what to expect for symptoms there? I used to work at DFIC which is right next door.. literally 300 yds away… I’m at Beth Iseral. Dana Farber is always an option for me to get a 2nd opinion… but till 2 weeks ago I was cruising along on Ibrance and hoped to go longer than 18months… so wasn’t anything til now that needed a 2nd opinion as Ibrance is a no brainer for first line… but prob should ask for 2nd opinion now.
Stay away from Dr. Google!
I had 3 enlarged and painful lymph nodes under arm and in neck.. my onc looked at my bloods and said he thought i should change treatments.. I did and they have slowly gone down over 4 months. Of course, it is possible that the reduction is a coincidence..they always seem vague about how the lymph nodes are involved and are usually not too worried about it.
You do sound like my situation… I think they will be changing to chemo to try to stop these suckers getting bigger as they think it is a sign that the treatment is not working. What did you go onto that finally worked? I bet that was scary for them to be painful for months. I am so anxious about this and it has only been a few months. Thanks for writing!
Betty, how is that lymph node ? I'm hoping it is visibly smaller now since it's been a month.
My onc was pleased yesterday felt it shrunk by half but today I feel wiped out and a bit sore and just expecting this 2nd treatment can’t be working if I feel so bad. But trying to be positive. Enjoying a week all by myself while hubby celebrating bro’s 60th. Our caregivers need a break from all this worry. How are you doing? I’m going to meet Martha’sVineyard on here next week. I am so excited!
Shrunk by half is great news ! I'm sorry you feel wiped out . Even if treatment is working , this stage IV stuff can be overwhelming . Have a great weekend and meet up with Martha's Vineyard next week 
I am doing fine (as far as I know !) scans at the end of June.
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