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huge neck lump and swollen nodes.help

julieann290
Posts: 4
Joined: Feb 2013

hi all. ive just come across this site and i was hoping someone could give me some advice.3 months ago i was putting cream on my face and nevk when i felt a lump as i was rubbing down the left side of my neck.the lump is about 1 inch above my shoulder.i was also getting a lot of aching on that side of my neck and occasionaly a sharp stabbing pain so i went to my gp.she felt the lump and said its probably just muscle.i accepted what she told me as she is a qualified doctor and im not.however the lump seems to be growing really quickly infact.its about 1 and half inches wide now and goes all the way up to the bottom of my hairline where it touches a swollen lymph node.i went back to my gp but had to see a different doctor 2 weeks ago who felt for swollen lymph nodes.he said the lump on my neck is a really swollen lymph node and they are swollen on the vack of my head and under my chin.the smallest is swollen to about 2 cm the rest a lot bigger.i have finally been refered and im waiting to see a specialist on 6th mar.im really worried as my symptoms are getting much worse and im really struggling to function properly.im struggling to eat as it feels uncomfortable to swallow(as if theres a lump constantly in my throat) im exhausted all the time.cant really talk.for long as the very vack of my tongue and throat ache and hurt.pains in my legs and really bad headaches.im more worried that the docs have left me just over 3 months before refering me because if it is some form of cancer  then it could have spread .has anyone been through the same as me and can offer any advice i would really appreciate it.thanks for reading and good day to all xx

longtermsurvivor's picture
longtermsurvivor
Posts: 1787
Joined: Mar 2010

If you think it may be cancer, it is torture to have to wait three more weeks for this appointment.  I would first call the specialist's office and ask to be moved up.  Simply tell them you think this is malignant, and that you are scared to pieces since it has been so long waiting already.  If you don't get help this way, call the referring doctor's office back and ask for help getting in sooner.  If not where you've already been referred, then somewhere else.  What specialty have you been referred to?

 

Pat

julieann290
Posts: 4
Joined: Feb 2013

thanks for your response :).i have been refered to ear nose and throat specialists.in our area the doc goes on the computer during the appointment and requests a referal and an appointment gets printed out.so thats how i got my appointment for 6th march.she did say however that when they receive her referal letter through the post they might ring me to go in sooner as its been going on for so long.this 3rd doctor i seen was quite appalled that i gad seen 2 doctors prior to seeing ger and not 1 of them refered me on.instead they just left me and made excuses.

longtermsurvivor's picture
longtermsurvivor
Posts: 1787
Joined: Mar 2010

This system doesn't work very well.  Somebody should pick up the phone right now.  I'd keep ringing people myself until something changed.  I'd personally call both the referring doctor's office and the referral office every day until this happens.  be nice, but be insistent.  You don't likely have SCC of the throat, from the description you've given.  If you are proven to have a malignancy, it is more likelly going to be something primarily involvving the lymph nodes, like a lymphoma.  Now I'm not trying to diagnose you, but I'm just saying that your situation may need to involve yet more referrals, because ENT doesn't treat everything that shows up in the area of the neck.  So again, be an advvocate for yourself.  The squeaky wheel gets the grease.

 

Wishing you the best.

 

Pat

julieann290
Posts: 4
Joined: Feb 2013

thank you pat.i am going to get in touch with ent to see if they can see me any quicker if they say they cant then i will get back onto the refering doc.i really am sick of being messed around.after all i have been suffering for 3 months now with 3 dif courses of antibiotics that have done no good at all.im struggling more with my mouth and nose area.i cant open my mouth wide as it really hurts and my nose feels permanently dry and blocked.thank you for the advice.i am going to keep on at them until someone finally gets me seen to :)

fisrpotpe's picture
fisrpotpe
Posts: 1334
Joined: Aug 2010

be aware that the belief here is "it's not cancer until the biopsy says it is". pictures, nor feeling on the neck, nore pain in the neck, nor reading information on internet will determine that there is cancer. i was told first trip to doc that i had infected area and gave antibiotic, three weeks later said must not be it, go see ent. so the diagnosis takes a long time but for certain you doc's dropped the ball somewhere. 

i so agree with Pat, you need to get on phone, be nice but ask for help in seeing doc's sooner. i know here, i get the appointment that is normally 3 weeks out, i get home and call that office and ask to get in faster and most all the time it works. 

nothing in the health world happens fast enough, wisdom is needed alot. 

john 

 

 

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Julieann,

It seems there is a general time period of a month to three months from the onset of noticable symptoms to diagnosis. I had caught a cold/sinus infection last August and was treated with two courses of antibiotics between September and the end of November when I was diagnosed. Then, a misstep concerning treatment plans and decisions and here I am, just having undergone a neck dissection. Treatment will begin in a few weeks. 

I can tell you by this time last week before surgery, I was feeling ill. Similar symptoms but not all. Mind you, I was diagnosed as positive for Squamous Cell Carcinoma Head and Neck Unknown Primary. Tx N2b MO Stage IV. 

The squeaky wheel definitely gets the oil so be persistent and remember, it's NOT cancer until the tests say it is! 

"T"

phrannie51's picture
phrannie51
Posts: 3685
Joined: Mar 2012

when I was getting the run around by the GP's....I would have been on the phone talking to the ENT's office getting my appointment bumped up.....I had to wait 5 weeks between the referral the appointment.....Having had little contact with the medical world before all this popped up, I thought it was just the way it was....though I was a wreck for those 5 weeks.

As it was, it turned out ok....and treatment didn't start anyway, for another 6 or 7 weeks....

p

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

I kind of went the same route as you... First saw my GP early October..., he gave me antibiotics.. They did squat, saw him again a few weeks later..., he gave me stronger meds...Levaquinn..., again squat.

It's early December now with Holidays and all, saw my ENT January 2..., first thing out of his mouth once he scoped me and sent me down for a CT... He was 90% plus sure I had SCC Tonsil Cancer... Ended up after biopsy, etc... STGIII Tonsil Cancer HPV+... But clean and clear since finishing treatment mid June 2009.

Now I in no way want to scare you, I was having a few other issues long before, but I didn't think they were serious and kept blowing them off...

I'm like Pat, and more than likely you have some other issue. But you have noway at all determing that without seeing an ENT and having some testing completed...

I'm all for stressing to your GP, and the ENT that you want something done sooner... If the ENT can't get you in any sooner, ask for another referal to an MD that can.

Best ~ John

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

Not sure why the original post was flagged...

I presume it was just a mistake, unless I missed something.

John

 BTW, got the original post UN-Flagged..., just an FYI, flagging just lets the MOD know that something might be offense, what not and to take a look at the post and determine if it should stay or go...

I presume this was flagged my mistake...

JG

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Julieann,

When my husband came home from the drs office with a copy of his results, I sent him to the ENT's office to personally deliver a hard copy. The nurse said the ENT would read it within 24 hours. Before he got in the elevator, the nurse came back out, and said be here tomorrow, 8:30 am, he's going to do biopsies. 

Not sure if that would work for you, but hard to say no when they are looking in your eyes.

hope the doctors can accommodate you!

Kari

HobbsDoggy
Posts: 165
Joined: Feb 2013

i agree you have to be your own advocate.  I went through the same deal, infection as the first dianosis then opps maybe cancer, then maybe not, etc.  It will take some time to get it all sorted out or at least it did for me.  I would call and ask to get in before, explain exactly why.  I found it funny that I could get into the Cleveland Clinic (330 miles from me) before I could get into see the local doctors. 

HobbsDoggy
Posts: 165
Joined: Feb 2013

i agree you have to be your own advocate.  I went through the same deal, infection as the first dianosis then opps maybe cancer, then maybe not, etc.  It will take some time to get it all sorted out or at least it did for me.  I would call and ask to get in before, explain exactly why.  I found it funny that I could get into the Cleveland Clinic (330 miles from me) before I could get into see the local doctors.  I don't think the wait hurt my treatment, but my neck did not get big as fast as yours is moving. 

CivilMatt's picture
CivilMatt
Posts: 2924
Joined: May 2012

Julieann,

 

I agree wit the rest, you need to see the ENT and the sooner the better for peace of mind.  The tack I take all the time is to tell them I can fill in for a cancelled appt (anytime) and it often works to get me in the same day if  not the next.

 

It is not cancer till they say it is cancer.

 

Good luck,

 

Matt

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Be squeaky!!!

 

I had my appt with the cancer center BEFORE I had my biopsy or dx.  Sure wish that was one appt I had to cancel.

 

When my GP gave me the first round of antibiotics, I was on the phone with an ENT and the cancer center.  The lady at the cancer center thought I was crazy and informed me they can not give an appt without a biopsy much less diagnosis.  I don't know if I sounded that scared or pitiful or what (I think the good Lord was watching out for me bc I sure was saying some prayers) but she gave me the appt and said I must call her back after the biopsy and also after the dx to keep her up to date.  We corresponded by phone each step.

My scan Oct 21(after the 2nd round of antibiotics did not clear my swollen lymph node) showed a mass at the base of my tongue and on lymph node,  my biopsy was Nov 11 / dx next day and I was at the cancer center getting first dose of chemo and mask fitting Nov 21.  It was all a blur to me.

Call, call, call and call again.

Whispered a prayer it is nothing and you get all worked up for nothingSealed

 

Tim

guerreje's picture
guerreje
Posts: 2
Joined: Feb 2013

I noticed a lump on my neck, right side, over the holidays and assumed it was a swollen lymph node so waited for the cold.  The cold never came and the node stayed, so after about 3 weeks I had it checked.  My primary felt all around my other lymph nodes and did not find any others swollen, did not know what it was, so sent me for a CT Scan.  There was a mass a little over an inch so he sent me to an ENT specialist who took a biopsy.  A week later I was diagnosed with cancer.  That was 3 weeks ago.  I start radiation and chemo on Monday to attack HPV-positive Stage IV cancer of the tonsil that has spread to two lymph nodes, the large one already mentioned and a much much smaller one.  My prognosis is very very good for severaly reasons including acting quickly.  God Bless my primary!

Bottom line--get to a specialist ASAP.  I felt foolish going in, getting the scan, etc.....but am I glad I did.  Better safe than sorry.  Blessings to you.  

CivilMatt's picture
CivilMatt
Posts: 2924
Joined: May 2012

Guerreje,

 

Welcome to the H&N forum and most sorry you are here

 

I too felt a lump on my neck while shaving.  My GP gave it a week to get better then punted to the ENT team.  Wham, bam thank you ma’am, I am here.

 

Matt

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Matt,

Dan did the antibiotic route too... Scary it was 2007... The doctor said if the node doesn't go away come back.. Then he sold his practice and stopped taking appointments. We didn't have a primary, and busy planning our wedding, buying a house, I had a heart attack, then my gall bladder went belly up.. And that little cancer sat there waiting.. For 5 years before it took off on the growth charts... We thank god everyday it was sitting there dormant. I often think what if... But the tumor in his tonsil was small, so it might have been worse if it were unknown primary... and the doctors have had time to learn more... Just scary when you realize later..  Thankfully, we hopefully found out in time to be just as effective.

Kari

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

Sounds like you are on schedule for the same or very close treatment that many of us have had...

Best ~ John

josh r.
Posts: 188
Joined: Oct 2010

Hi Julieann290,

I too found a golfball lump on the left side of my neck and "knew" it wasn't a pulled muscle etc. I went to an ENT who did a biobsie within a week. It was positive and I was given 10% chance of seeing Christmas. This was July of 1991! Treatment started on July 28, 1991 and ALL ended on November 22nd 1991! Do NOT hesitate, get a second or third opion but be persistant NOW! Leave nothing to chance and God Bless. josh r. We are with you.

julieann290
Posts: 4
Joined: Feb 2013

thank you all for your advice and sharing your stories with me.i have rang the ent department and have got a cancelation.its only 2 days before the one i have already but they did say if i keep ringjng every other day to ask for cancelations then hopefully i will get an appointment a lot quicker.i am feeling a little more at ease after the advice you very kind people have given me so thank you all very much :) xx

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