Hoarssness of voice and right supraclavicular node enlarged: help!!

[fullofbeans]

Hi troups,

And again I find myself in the little hours of the night searching on the net for answers.. and wishing wishing wishing..

Basically I had a sore throat a few weeks ago and felt a bit run down. This is now getting better but I still have a hoarsseness in my voice and my right supraclavicular node enlarged about 1cm, it is quite movable and i can feel the node (which is how I discovered it).

I saw my onco and he said that he will see me again in 3/4 weeks and see if it is still there or getting worse but that I could contact them if it is getting worse B4.

Basically I was not too worried until tonight (because of teh bad throat I had in the week b4 node enlarged) when I notice that my voice was getting worse (more broken ) and that the enlarged node 'may' be getting bigger (but not sure) at least it is not getting better that is for sure. It has been a week since I was seen and 2 weeks since I noticed the lump..

Any word of wisdom..?? has any of you had this kind of issues??

[fullofbeans]

Right I am properly freaked out now as apparently infection drain into the left not the right node so that was not a possiblity ever..

Apparently there is an almost 100% of malignacy if the right suprac is enlrged from what I read
I am so scared..

[Catherine]

Full of beans,

I have no idea what this means. Just sending you a note to help support you in the middle of the night. It is 8pm here on the West Coast of the US. I am guessing you are in bed...and hopefully sleeping. All the best in getting some answers. Keep the faith.

Hugs,
Catherine

[Jean]

Dear Fullofbeans,
In the dark and quite of the night everything seems worse. It is midnight here on the East coast and early morning by you...I am hoping that the Sun is shining
on you today.

I would call my dr. and ask him if you could go in sooner and what tests to run so you can get answers. The unknown is the worst of it.

Sending Best Wishes,
Jean

[StephN]

Dear Beans -
Sorry to hear this development.
Can you ask for an ultrasound or needle biopsy.

Seems they could do something like that unless you want to wait for a PET scan.

I know you are a first class researcher, so I think you are most likely right in your findings.

Try to be calm and use your scientific "self" to get through this.

(((Hugs)))

[Ellie F]

Hi full of beans
Britain seems to be in the grip of throat infections at present! I have one to and so have most of my friends.
Are your neck nodes also enlarged as these also drain from ear and throat?
I understand your fear but just wanted to add that lymph nodes do sometimes take a long time to resolve post infection. The problem is following bc it is always the first thing we think it is.
Keeping fingers crossed it is b9 and just a response to your recent infection
Ellie

[fullofbeans]

Thanks,

I talked to the registrar this morning and asked her what else could it be telling her that from what I read only the left supraclavicular node can be infected by virus/bacteria but that the right supracla. is reported to be bet 90 to 100% of the time cancer and not infection.

She said that it can also be infected which goes against what I read so I am confused now and not sure what is right or wrong anymore.. I think I will book for next wednesday (when they hold the clinic) and give her a call back tomorrow..

Has anyone else had a right supra enlarged that was nothing or somthing..

[fullofbeans]

I have just read the letter from my past visit from the oncologist to the dr (you can opted to get copy of communication)

it says "that the node is too small at present and I have been reassuring to her but I would like to see her again when she comes for her Herceptin.."

That definitely does not sound good please send me good vibes I am so scared. The scarry moments I have had in teh past have never been so strong and I was always the one acting to get scan other something, this is the first time that the oncology team seem concerned..and really the alternative (infection is very small).

[whatz]

Hej FullOfBeans,
No medical knowledge to contribute just praying for you that Ellie is right and it's b9, also for peace-of-mind until you can get it tested and confirmed one way or another. One foot in front of the other. Based on your history you've beaten this beast quite soundly in the past already.

[Missyw]

Hi Full of Beans,

I had a node a couple of years ago that the onc was watching. It went down on its own within a month or so, and my next scans were all good. Please try not to worry. There are so many reasons to have a swollen node, especially after being ill. Do push for any and all confirming tests so you can once again relax.
Sending you prayers and hugs,
Missy

[fullofbeans]

Hi missy hope all is going for the best for you.

Was your node a right supraclavicular node???

[vlcarr]

Sending my positive thoughts your way. I don't have any experience to share but wanted to know I was thinking of you.

[schoolteacher]

Thinking of you. Hope you have a better night.

Amelia

[Lien]

Dear Fullofbeans,
I know this is scary. You have been NED for quite a while, so going back to active cancer is what you probably have been fearing all along.

I know three people who were diagnosed with lungcancer. Couldn't be anything else. Biopsies in all three were BENIGN. Doctors were flabbergasted. But it happened. I know several women (at least 4) who were diagnosed with BC Mets, went back to being NED and are still fine, years and years later. Yes, this could be a return of your cancer. But it could also be something else. My best friend is a dermatologist and she once told me: the longer I do this work, the more I become aware that I really know very little, because my patients surprise me on a regular basis.

What I'm trying to say is this: don't give up hope. Wait till tests confirm what it is and don't start planning the next move until you know what's what. Go back to your doc and tell her how you feel and that you would like to get it tested.

Sending waves of relaxation and healing vibes,

Jacqueline

[lkc Gumby]

hi Full of Beans.
I am sorry to hear that you are so scared. I think sometimes at night, while googling for some assurance, we can pick up on something that freaks us out. ( Iknow I did it ALL the time)
It is not unusual to watch a small node. and you can have swelling on either side due to infection. The hoarseness lends itself to an inflammatory process and it not uncommon w/ Herceptin.
Please try to relax. I know it's hard to wait and I hope your appt can be moved up. I will keep you in my prayers for good news.

[fullofbeans]

Thank you all for your good vibes and prayers

I am fighting hard to keep the hope

xoxoxoxox

[caya]

Hi Beans,

Just saw this thread, I am sending you hugs and encouragment... Keep us posted.

all the best
caya

[Jean]

Fullofbeans,
I am glad you called the registrar I did some research and she is correct....

The right supraclavicular node drains the mediastinum,
lungs, esophagus and can harbor infection. Many things can cause the node to enlarge. Have question for you,
is the node mushy or hard?

Having a sore throat along with your node could very well be infection ...and the nodes can stay enlarged for
some time.

I know it is easier said then done about worrying, so do make an appt to go in and get some answers.

I hope you are feeling a bit better and please know I am thinking and praying for good news from you.

kindest regards,
jean

[ElaineM]

I have my fingers crossed for your throat problem to be something less than cancer that can be fixed easily. Let us know how you are doing after you see the doc and get tested.

[fullofbeans]

Thank you all again for your good thoughts

Jean,the lump is as the onc put it of "uncertain clinical significance", it not mushy at all but it is not rock hard, it is mobile but not highly mobile.. so we are not much wiser..

the fact that it is too small at mo for aspiration is the reason we are waiting. I guess I could have it out and analysed but that would be a drastic decision. I have read that over 90% of lump in that specific node are cancerous..this is why it is freaking me out and no where do they talk about infection but i guess it is a possibility for which I hold my breath for. Also I have a rash on my right arms and a bad neck for a little while which I did not mention because I did not think it was possibly related (think neck is from bad position on computer and the rash from the sun..)

There have been a few scare on this site that seemed a bit desperate and turned out to be b9. let's hope I make the list longer..

[michka]

Hi Fullofbeans I don't like to hear you worried like that. My question may be stupid but could a Pet/Scan let you know faster than waiting (till it maybe grows) if the node is cancerous? Is a Pet/Scan difficult to accede in the UK? I send you hugs. Michka

[Sheila]

FullofBeans

As an official in the neck lump area, I can tell you mine shower up in 2003, and has come and gone like an old friend since then, depending on treatment. I had the first group removed, they were on the same side as my breast cancer, they were tested as much to everyones surprise, they were an identical replica of the breast cancer in characteristics...I have been battling them for 7 years. My hoarseness came 6 years later, and was caused by the lymph nodes pressing on and paralyzing my left vocal cord.
A swollen node can cause the hoarseness, truly not uncommon.....is yours on the same side as the breast cancer? Sending you positive vibes that all it is is an inflamed node, which is most likely.
When mine was found to be the cancer, everyone was shocked, so it must not be common.

[fullofbeans]

thanks again, I know I am not being cool at all. but it is in my nature never been a calm and collected person, alas.

michka, no it is not a stupid question and yes hard to get a pet scan here, unfortunately. And they are not so reliable I suppose in anycase (from what I see from this site but i may be wrong). but as suggested by StephN I should see if they can organise an ultrasound.

Sheila: first thanks for you experience it sounds stupid but i actually had not considered that it could be mets to the supraclavicular nodes only. I only thought that it could be a sign of malignancy for other places such as the lung... but yes these are on the same side as the cancer.. how does that work do you just have the mets in nodes? how come it cannot be removed by cutting off the nodes..(I am sure it is terribly very stupid question but know nothing about it and seem little easy accessible info..)

when you noticed the node(s) how big were they and how quickly did they grow? Also did you have a sore throat (feel like my neck nodes are tender aswell) so i guess that is why I never considered just supraclavicular node only but as I do not know the symptoms: do you simply have enlarged nodes (and hoarseness)? would the node not need to be big to affect voice box?

[Sheila]

FullofBeans
The first time I noticed the lump, it was tender, about the size of a small grape. 3 nodes were removed, all the breast cancer (mets). I was then able to receive herceptin, as i had mets (I was originally Stage 1, clean nodes). This occured 1 1/2 yrs after original diagnosis. Herceptin kept things in check for a year or more, then they started growing again....that was when chemos were added...they would disappear, then come back, chemo change, they would go away...etc. The hoarseness came after a bout of pneumonia, lots of coughing...but when it didnt go away, a CT of the neck revealed enlarged metastatic nodes pressing on the Left vocal cord. This has caused vocal cord paralysis on the left side, so i sound like I have a Minnie Mouse voice....
anyway, I never had a sore throat through any of this...if you have more than one node swollen, or on both sides, even more than 1 on one side, it can be from a sore throat, infection etc. Try not to worry, even IF it was something, treatment will keep it in check.....I have been fighting nodes for 7 years!!!
Thinking of you, I know how hard this is, believe me!

[fullofbeans]

Thanks for info Sheila, looks like I will have to be patient and perhaps wait another week and try to forget about it (yeah right) and since I have a sore throat if it is bad news i think it is more likely to be a lung thing as oppose to a localised supra mets.. although they could be unrelated. The problem is that everything I read does not mention infection as a possibility..this is really unsettling me..

I know that all of you understand all too well what waiting feels like and I can be a bit obsessive as oppose to go into denial..

[Jackie07]

Fullofbeans,

I had a similar scare last year when I was so sure that I had met to the right side of my neck (the same side of my breast cancer)

The family doctor ordered severak kinds of scans and never told me anything except that "it's(the MRI) fine, but I'd like you to see the neurosurgeon."

It wasn't until this spring when I bugged my oncologist about it. The I was told that I had cervical vertebrae degeneration. (the neck problem) And I did have two brain tumors (not BC related)that had enlarged.

I'm keeping my fingers crossed for you.l

[Nancy L]

As far as I have been able to determine, there are only a couple of women on this site, including me, who have had their breast cancer return to neck nodes. Dr. Slamon told me it is rare but it does happen.

My breast cancer was in my left breast, but it returned in the nodes of my right neck. I don't want to scare you but your hoarseness may mean the swollen node is pressing against your vocal cord. In my case, the vocal cord became paralyzed. I suggest you do a search on this site for neck nodes and read the discussions if you want to learn more. I would also be happy to talk to you about my experience if you have questions. Please just send me an e-mail.

[fullofbeans]

Thanks Nancy for your reply.

I have now noticed that I have another supraclav nodes enlarged (just next to the first one) and both are still quite small (<1cm). How big were your nodes when you noticed recurrence? and were they tender? and how quickly were they growing or were they more than 1cm when you first noticed them/it? did you just have one node..? did they spread to other supraclav node or just keept one growing alone?

sorry million of questions for you and Sheila. (not sure what a small grape is would you say over 1cm?)

My throat is still sore so I am clinging to that although I am struggling to see how I can have an infection and no fever and other sign of malaise apparently supraclav not really link with throat so very confused. I don't have any sputum and no cough.

[StephN]

Stick with it - make them give you an ultrasound. This needs to be checked out.

Have you had your throat looked at by a professional? Maybe a culture taken? I think there are other conditions that can cause a sore throat.

Do you still have your tonsils?

Is it possible you may have mononeucleosis? That is what I had and my nodes swelled, I had sore throat, tired, but no congestion or sputum.

Get a complete blood count.

[fullofbeans]

StephN,

You are right I will demand a ultrasound at the minimum.

I spoke to the registrar this morning and I am being seen at 11am tomorrow. I asked what was the point of seeing her instead of going straight for the ultrasound she said that they had to see me before being sent for an ultrasound (I know this is not true) but I will go along with the flow and make them give me an ultrasound. She said that the fact that the first one did not grow more since the 5th May is good.. but I really don't think that the appearance of the second one is good..she said it is still very likely to be an infection.

yes I still have my tonsils. Don't think it is mono because except for the worry which is bringing me down and sucking up my energy, I am not feeling very tired. But my neck is quite sore on the right side particularly which is why I have managed to wait for 3 weeks so far since it actually appeared. But the more I read about it the more I think it is ridiculous to make me wait.

[ElaineM]

You should definitely be tested. Good luck. I have my fingers crossed that you find out what is going on.
Take care.

[schoolteacher]

Full of Beans'

Hope you hear the results of the ultrasound soon.

Amelia

[Ellie F]

Good luck full of beans. I have an appointment at the same time. Who knows we may pass in the clinic.

Ellie

[Laurel]

Good luck and best wishes for good news for both of you!

[fullofbeans]

Thank you all for your best wishes.
More soon

[fullofbeans]

Ultrasounds:

I have three right supraclavicular lymph node enlarged max 0.7cm (can only feel 2), few prominent left ones. they took a FN biop and will get the results tomorrow. They have pre-emptively booked me for the CT scans in case the test come back positive (which by now they expect it will from the ultrasound reports).

Now I have the night and the morning to wait for the results and I need not tell you how I feel. thank you for your good wishes i appreciate them. i feel strngely calm as in the eye of the storm.

[StephN]

Dear Beanie -

That is the pits. But your feeling of "strange calm" is always what I have felt once the question was answered, no matter the answer.

As has been said here a thousand times, it is the NOT knowing, wondering stage that has us tied in knots.

Once we have some confirmation we can either relax or form a plan. You know that you have plenty of options, and it is not the first time Herceptin as monotherapy might let the cancer grow.

Is it the node you can't feel that is causing the hoarse voice?

Glad you stuck to your guns and did not let them put you off another month.

[Lien]

Dear Fullofbeans,

Oh Yikes! You must be so scared. But it still could be B9! Let's see what the biopsy tells you. My friend was told she had lung mets, but when they did the surgery, they found it was b9. It can happen. I hope you will be fine.

Sending lots of hugs

Jacqueline

[Unregistered]

Hi Fullofbeans,
Sorry you are going through this again........hope you get good news tomorrow x

Lien,
I noticed you are taking mistletoe..........are you injecting it? Is there anyone else having mistletoe (iscador) therapy?

[Laurel]

Ok, that sucks, but perhaps there is less storm than the radar shows. I will continue to pray for no invasion. I do want to express my admiration for your courage. Way to ride tall in the saddle! Please let us know what the needle bx shows.

[fullofbeans]

thank you for your wishes and prayers and thank you for being there even if it is virtually..

I cannot sleep and found this article and Staphylococcus aureus can have sore throat as a symptom and can be found in swollen supraclavicualr. There are quite possibly some other mycobacteria that can do that. Now this is what I will cling on..a possibility.


More soon




http://www3.interscience.wiley.com/journal/55001060/abstract?CRETRY=1&SRETRY=0
Background
The purpose of this study was to determine the current distribution of diseases resulting in supraclavicular swelling or lymphadenopathy as diagnosed by fine needle aspiration (FNA) biopsy.

Methods
Supraclavicular aspirates in this retrospective 5-year study from a large public hospital were classified as neoplastic, infectious, inflammatory, reactive, and nondiagnostic.

Results
Malignancy was present in 55% of the 309 aspirates (47% metastatic, 8% lymphoma). Age was most predictive of malignancy (32% for age 41 years, 68% for age >40 years). Lymphoma occurred equally in both groups, but the lymphoma:metastasis ratio was much higher in younger patients (1:1.6 for age <*leq>41 years versus 1:11 for age >40 years). Ethnic origin was related to tumor type, metastatic uterine cervical carcinoma being most frequent in Hispanics, and lymphoma in Caucasians. Primary oropharyngeal sites were unusual; most malignancies originated in the lung, breast, or cervix. Left or right side did not discriminate for either the presence or type of tumor. The 43 aspirates from human immunodeficiency virus (HIV) positive (+) patients were predominantly inflammatory, infectious, or reactive; lymphoma was infrequent (7%). Overall, 39 patients had mycobacterial infection; aspirate smears or culture were positive in 19. Three other FNAs grew Staphylococcus aureus and one stained for Cryptococcus. Aspirates were not informative in 24 cases (8%). The sensitivity of FNA for malignancy was 97%, specificity was 98%, and positive predictive value 98%.

Conclusion
Aspiration biopsy is an excellent diagnostic tool for supraclavicular masses. Patients over 40 years old are likely to have metastatic malignancy, from breast, lung, or infradiaphragmatic sites. Aspirates with inflammation and those from HIV+ patients should undergo extensive culture. © 1999 John Wiley & Sons, Inc. Head Neck 21: 239-246, 1999.