New to this site

Hi all - my name's Crystal. I'm a 30 year old mom of 4 from Florida. I am new here - not 100% sure if I will need to be here or not but figured at least for now it is a place to start. 4 months ago I found I had a few swollen lymph nodes behind my ear and on my neck and collar bone and asked my doctor about them at a routine visit. She told me just to keep an eye on them and if they didn't go down after a few weeks we would re-evaluate. A couple months go by and i notice that they were there and a couple more nodes were popping up. They weren't sore but were there. I had also been dealing with low grade fevers and night sweats on a regular basis. The beginning of December I went in for a cold/allergies and let her know that the lymph nodes were still swollen and prominent and she decided to order blood work and a CT with and without contrast of the soft tissue of the neck and also CT of the chest. CBC came back fairly normal, some anemia, but my sed rate was slightly elevated but she didn't seem overly concerned. My CT came back showing multiple enlarged lymph nodes down both sides  of my neck and down into my axillary (armpits) area but non that were large enough for pathology concerns (over 1cmx1cm i believe is what i was told). The report also said i had an asymmetrical mass at the base of my tongue that protruded into the back of my throat. Again my doctor didn't seem to concerned but to calm my fears she referred me to an ENT as well as an oncologist to get some further testing, possible biopsies done as the radiolgist did reccomend further evaluation of at least the mass in my throat. So I call around to a couple of local oncologists, the first one wouldn't see me since I didn't have a diagnosis of cancer yet, same with the 2nd one. I was getting frustrated as I am new to all this and my dr just told me that i was being referred since she wasnt the one to do the biopsies's etc. The 3rd oncologist I called pulled my reports and said he definitely would see me and at least point me in the right direction. At that point I also made an appointment with one of the highly reccomended ENT's in the area as well. I went and saw the oncologist and he didn't seem too concerned as he said he could barely feel the lymph nodes that were supposedly enlarged (i am a bigger woman so I have thick skin haha ) but that he felt the length of time and my symptoms and CT did warrant to go ahead and order a PET scan so that way the ENT would have some guidance as to where he would want to biopsy if he decides to. So that was Tuesday, they got me in for the PET scan the other day on Thursday which went fairly easy  - hardest part was sitting there for an hour letting the tracer do its work. Then yesterday (Friday) I saw the ENT to get the results of the PET scan and see what he wanted to do about the mass in my throat. The nurse came in first and was putting in my meds in my chart on the computer and then was typing in the impressions from the 3 page report from the PET scan (from experience any lengthy report more than a page really can't be too good news) and I'm reading from where I"m sitting what she is typing in and I see basically the results before they're even explained to me. One word stood out. Malignancy. The ENT came in and I was all smiles talking to my husband and he said well im glad to see you're all in a good mood considering your results... I asked what he meant and he said well obviously we dont have biopsies to confirm yet but that given the PET scan he was very concerned as the mass in my throat had a SUV of 10.6 extending from the left side of the base of my tongue to the hyoid bone. And the surrouding lymph nodes showed the hyper activity (forgive me if i'm using the wrong words i don't have the report right in front of me) with SUV numbers ranging from 5.0 - 7.0 and the radiologist used the words likely consistant with malignancy. The ENT said that radiologist don't just throw those words around in reports lightly - they rarely use those words unless they are very sure of them. plus i had many more nodes with lower numbers but still showing activity all down my neck into my armpits as well as my groin. so my ENT is doing a biopsy of the mass at the base of my tongue on Tuesday as he thinks that it is the source of what ever is going on - and then he said if for some reason it comes back negative they at that point will go in and do biopsies of a couple nodes but he's almost positive it's the tongue mass. So while i do not have an official diagnosis of cancer, or what type - I'm playing the waiting game. If any one has any experiences with something similar or advice - it would be greatly appreciated. I'm so scared. I already have a long history of high blood pressure and now left sided heart failure due to the years of high blood pressure and was finally getting my health on track to now be dealing with this.

 

Thank you guys

Comments

  • wmc
    wmc Member Posts: 1,804
    Welcome and we hope you don't need to be here too

    Welcome Crystal, and we do hope you don't need to be here. What you have been through is scarry, but it's not cancer until the doctor said it is. Your blood work was good over all, and you have had a temp and a cold/allergies which will get your lymph glands working and doing what they are suposed to do, fight infections. Now the radiologist used the words likely consistant with malignancy does not mean it is. It dose sound scarry, but try [I know how hard that is] not to worry that much. When they do the biopsy you will know more. 

    Now on the bright side you have many things going for you. First your age helps and "if" it is anything it is very early and your on top of it. There is many on this site that have gone through this and can help, IF needed. Lets hope it is just a infection and that can light up a PET/CT scan also. You did get to a good ENT and he will see you through this. Take one day at a time, and if it turns out to be anything, know that you can and will beat it. You will get all the support you need as well as answers. For now, let's hope you don't need it. We will add you to my prayer list just in case. Try not to worry.

    Bill

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    welcome

    Mom2ThreeGirlsFL,

    Welcome to the H&N forum, sorry you need to visit.

    Sounds like a biopsy is a good choice, the results will determine your path forward.  We always say it isn’t cancer until they say it is cancer.

    I was stage IVa, scc, base of tongue and it was a swollen lymph node that started my adventure (no pain or fever).

    The doctors have a lot of good options, so don’t fret too much.

    Best,

    Matt

  • hwt
    hwt Member Posts: 2,328 Member
    CivilMatt said:

    welcome

    Mom2ThreeGirlsFL,

    Welcome to the H&N forum, sorry you need to visit.

    Sounds like a biopsy is a good choice, the results will determine your path forward.  We always say it isn’t cancer until they say it is cancer.

    I was stage IVa, scc, base of tongue and it was a swollen lymph node that started my adventure (no pain or fever).

    The doctors have a lot of good options, so don’t fret too much.

    Best,

    Matt

    Mom2Three

    Sorry you had the need to find us but glad you did. It is understandable that you are anxious but try to take things as they come and deal with them. Worry can be wasted energy. "If" it is cancer, you have found a group of people here that can certainly help you through the journey. You will be in my prayers.

     

    Candi in St Louis

  • Sailor123
    Sailor123 Member Posts: 97
    Hi Crystal:
    I'm sorry your

    Hi Crystal:

    I'm sorry your diagnosis is unknown at this point.  I understand your fear.

    It sounds like you really got the run around.  Usually a good ENT will have all the important tools and information to assist you going forward.  I was only referred to an oncologist once it was confirmed to be cancer.  I had a tumor at the base of my tongue, with lymph node involvement.

    Keep us posted and we can certainly guide you down the path if that becomes necessary.

    Good luck to you.

    Shirley

  • MrsBD
    MrsBD Member Posts: 615 Member
    Playing the waiting game

    Dear Crystal,

    On this site, you will find lots of people who have played the waiting game. It's one of the most stressful times, so you are not alone in feeling scared. According to my doctor, most swollen lymph nodes are due to infection. Even if cancer is found, it is no longer a death sentence. There are so many treatments now that were not even available a few years ago. I will keep you in my prayers. Please let us know how you are doing.

    Beth

  • donfoo
    donfoo Member Posts: 1,771 Member
    welcome

    this is a great place to join others who know your experiences. sorry you have to be here. couple things. you are to be commended on pushung for a diagnosis. you suspected there was somthing more and got more testing.  other thing is really reconsider your doctor network. find one that is more responsive. it seems far overdue a simple biopsy was not done to assess the tumor.  Virtually all folks get a biopsy then scans are done for assessment and treatment planning. The PET and report seem to state you have cancer. At this point the chance the biopsy is negative is very low if material is obtained surgically. if by FNA, greater chance of error. Reported SUV levels from multiple areas gave the radiologist the evidence to report cancer.

    Make sure you have someone at all appointments with you to pick up what you miss or get wrong. You have to fight through the fog for clear vision and focus. Important facts and decisions are being laid out so try to get informed by getting educated and support for the journey. You will get through this but the road will have potholes and forks. Again, welcome. Don 

     

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    hi Crystal.  Welcome to our

    hi Crystal.  Welcome to our family although i pray you find you don't need us.  I'm sorry you are facing this we all know how scary it is.  I pray your nerves won't get the best of you.  I will be praying for good news but if you need us, we will be here to help you through.  please let us know about the biopsy.

    God bless you,

    dj

  • Maybe any of you guys can

    Maybe any of you guys can shed some light. I know of course again - biopsy means everything and is the ultimate results and that you guys are not doctors. I think i have read and re read over the PET scan results so many times and while I understand them at the same time I debate in my head whether or not the results truly show possible malignancy. I'll put exactly what they say in here. Thoughts please if that's okay?

     

    Findings:

    Head and Neck: There is a hypermetabolic tongue base mass prominent on the left but crosses the midline. The maximum SUV measures 10.6. This also extends inferiorly to involve the hyoid bone. There is hypermetabolic right cervical lymph node with maximum SUV of 4.7. This corresponds to a 1.0x0.7cm lymph node. There is an additional right posterior cervical lymph node with maximum SUV of 3.1. This corresponds to a 1.1x1.1cm lymph node. There is a hypermetabolic left lower cervical lymph node with maximum SUV of 5.2. This corresponds to a 1.4x0.9cm lymph node. There is a hypermetabolic left cervical lymph node seen just posterior to the left of the mandible with maximum SUV of 6.5. This corresponds to a 1.5x0.9cm lymph node. There are several additional small hypermetabolic bilateral cervical lymph nodes. There are no FDG-Avid supraclavicular lymph nodes.

    Chest: There are multiple bilateral hypermetabolic axillary lymph nodes. These are not pathologically enlarged. There is a hypermetabolic left axillary lymph node with maximum SUV of 1.7. This corresponds to a 1.1x0.7cm lymph node. There is a mildly FDG-Avid right axillary lymph node with a maximum SUV of 1.8. This corresponds to a 1.2x0.8cm lymph node. There are no FDG-Avid mediastinal or hilar lymph nodes. There is a 3mm, non FDG-Avid nodule along the major fissure in the right medial lower lung.

    Abdomen and Pelvis: There is normal FDG uptake within the liver, spleen, kidneys, bowel and bladder. There are several bilateral hypermetabolic inguinal lymph nodes. There is a hypermetabolic right inguinal lymph node with a maximum SUV of 2.5. This corresponds to a 1.7x1.1cm lymph node. There is a hypermetabolic left inguinal lymph node with a maximum SUV of 2.1. This corresponds to a 1.8x1.4cm lymph node. There are several mildly prominent, mildly FDG-Avid inguinal lymph nodes. There are several mildly prominent, non FDG-Avid mesenteric lymph nodes. There is a mesenteric lymph node within the right upper pelvis measuring 0.8cm. There is a mesenteric lymph node within the right abdomen measuring 0.6cm. There are several additional mildly prominent non FDG-Avid mesenteric lymph nodes.

    Skeletal: No definite evidence of FDG-Avid malignancy in the visualized skeleton.

    Impression:

    1. Hypermetabolic tongue base mass centered more on the left but crosses the midline to the right. This also extends inferiorly and involves the anterior portion of the hyoid bone and could also potentially invole the anterior portion of the oropharynx.

    2. Multiple bilateral hypermetabolic cervical lymph nodes consistant with malignancy.

    3. Multiple mildly prominent, mildly FDG-Avid bilateral axillary and inguinal ymph nodes. These are indeterminate for malignancy and may represent reactive lymph nodes. The largest of these is the inferior inguinal lymph nodes, if tissue diagnosis is needed.

    4. Stable non FDG-Avid 3mm nodule along the right major fissure.

  • wmc
    wmc Member Posts: 1,804

    Maybe any of you guys can

    Maybe any of you guys can shed some light. I know of course again - biopsy means everything and is the ultimate results and that you guys are not doctors. I think i have read and re read over the PET scan results so many times and while I understand them at the same time I debate in my head whether or not the results truly show possible malignancy. I'll put exactly what they say in here. Thoughts please if that's okay?

     

    Findings:

    Head and Neck: There is a hypermetabolic tongue base mass prominent on the left but crosses the midline. The maximum SUV measures 10.6. This also extends inferiorly to involve the hyoid bone. There is hypermetabolic right cervical lymph node with maximum SUV of 4.7. This corresponds to a 1.0x0.7cm lymph node. There is an additional right posterior cervical lymph node with maximum SUV of 3.1. This corresponds to a 1.1x1.1cm lymph node. There is a hypermetabolic left lower cervical lymph node with maximum SUV of 5.2. This corresponds to a 1.4x0.9cm lymph node. There is a hypermetabolic left cervical lymph node seen just posterior to the left of the mandible with maximum SUV of 6.5. This corresponds to a 1.5x0.9cm lymph node. There are several additional small hypermetabolic bilateral cervical lymph nodes. There are no FDG-Avid supraclavicular lymph nodes.

    Chest: There are multiple bilateral hypermetabolic axillary lymph nodes. These are not pathologically enlarged. There is a hypermetabolic left axillary lymph node with maximum SUV of 1.7. This corresponds to a 1.1x0.7cm lymph node. There is a mildly FDG-Avid right axillary lymph node with a maximum SUV of 1.8. This corresponds to a 1.2x0.8cm lymph node. There are no FDG-Avid mediastinal or hilar lymph nodes. There is a 3mm, non FDG-Avid nodule along the major fissure in the right medial lower lung.

    Abdomen and Pelvis: There is normal FDG uptake within the liver, spleen, kidneys, bowel and bladder. There are several bilateral hypermetabolic inguinal lymph nodes. There is a hypermetabolic right inguinal lymph node with a maximum SUV of 2.5. This corresponds to a 1.7x1.1cm lymph node. There is a hypermetabolic left inguinal lymph node with a maximum SUV of 2.1. This corresponds to a 1.8x1.4cm lymph node. There are several mildly prominent, mildly FDG-Avid inguinal lymph nodes. There are several mildly prominent, non FDG-Avid mesenteric lymph nodes. There is a mesenteric lymph node within the right upper pelvis measuring 0.8cm. There is a mesenteric lymph node within the right abdomen measuring 0.6cm. There are several additional mildly prominent non FDG-Avid mesenteric lymph nodes.

    Skeletal: No definite evidence of FDG-Avid malignancy in the visualized skeleton.

    Impression:

    1. Hypermetabolic tongue base mass centered more on the left but crosses the midline to the right. This also extends inferiorly and involves the anterior portion of the hyoid bone and could also potentially invole the anterior portion of the oropharynx.

    2. Multiple bilateral hypermetabolic cervical lymph nodes consistant with malignancy.

    3. Multiple mildly prominent, mildly FDG-Avid bilateral axillary and inguinal ymph nodes. These are indeterminate for malignancy and may represent reactive lymph nodes. The largest of these is the inferior inguinal lymph nodes, if tissue diagnosis is needed.

    4. Stable non FDG-Avid 3mm nodule along the right major fissure.

    #2 Cervical lymph nodes consistent with malignancy.

    Biopsy's are not always the last word. If the site is small and they don't hit it you show nothing. Because you light up a PET means there is activity but not always mean positive, there have been lots of false PET's. 

     #2 Cervical lymph nodes consistent with malignancy. Consistent is not saying it is malignant. Just good odds.

    Your best to do now is put down the report. You got tossed around by doctors at the begining and that should never happened. I was sent to a local oncologist to rule out cancer in my case, lots of symptions and weight loss. He did blood work and talked to me and saw reports and said "there is no way I have cancer so don't worry". They found it 10 months to a year later and It can't get that big in a year, so he was wrong. My lung Dr found it trying to scope my lungs and found it and did a brushing and it was positive.

    You are set to have a biopsy and it will clear up your questions. It sounds like their is something at base of tounge but you don't know what yet. It might be nothing outher than infection. If it is something you have got it in the very early stages and it will be ok, you will beat it. Don't put the cart before the horse. Just wait, you will know soon.

    This might be a little black and white, and just my view. I'm not trying to be too blunt just answer you honistly.

    Bill

  • tommyodavey
    tommyodavey Member Posts: 726 Member
    wmc said:

    #2 Cervical lymph nodes consistent with malignancy.

    Biopsy's are not always the last word. If the site is small and they don't hit it you show nothing. Because you light up a PET means there is activity but not always mean positive, there have been lots of false PET's. 

     #2 Cervical lymph nodes consistent with malignancy. Consistent is not saying it is malignant. Just good odds.

    Your best to do now is put down the report. You got tossed around by doctors at the begining and that should never happened. I was sent to a local oncologist to rule out cancer in my case, lots of symptions and weight loss. He did blood work and talked to me and saw reports and said "there is no way I have cancer so don't worry". They found it 10 months to a year later and It can't get that big in a year, so he was wrong. My lung Dr found it trying to scope my lungs and found it and did a brushing and it was positive.

    You are set to have a biopsy and it will clear up your questions. It sounds like their is something at base of tounge but you don't know what yet. It might be nothing outher than infection. If it is something you have got it in the very early stages and it will be ok, you will beat it. Don't put the cart before the horse. Just wait, you will know soon.

    This might be a little black and white, and just my view. I'm not trying to be too blunt just answer you honistly.

    Bill

    Base of Tongue

    Hi Crystal,

    What you are describing sounds like what I had.  Send me a PM and we'll chat.

    Tom

  • So I went in for surgery

    So I went in for surgery yesterday and had a biopsy of the base of my tongue. Needless to say I am so sore today! Both in my throat, it hurts to swallow and talk. Seems icecream and cold drinks are my only best friend right now. And my whole body feels like a mac truck hit it. Now to play the waiting game. I don't get the results until Wednesday when I follow up with my ENT. I didn't get to see the ENT after my surgery but when he came out and talked to my husband after i got into recovery, my husband just said he told him i did well during the surgery and that he feels he got a good enough piece for the biopsy and hopefully we'll have some answers. I'm guessing that they don't do the frozen samples or what ever it is to get a preliminary quick answer. So here's to the count down. 5 days to go

  • wmc
    wmc Member Posts: 1,804

    So I went in for surgery

    So I went in for surgery yesterday and had a biopsy of the base of my tongue. Needless to say I am so sore today! Both in my throat, it hurts to swallow and talk. Seems icecream and cold drinks are my only best friend right now. And my whole body feels like a mac truck hit it. Now to play the waiting game. I don't get the results until Wednesday when I follow up with my ENT. I didn't get to see the ENT after my surgery but when he came out and talked to my husband after i got into recovery, my husband just said he told him i did well during the surgery and that he feels he got a good enough piece for the biopsy and hopefully we'll have some answers. I'm guessing that they don't do the frozen samples or what ever it is to get a preliminary quick answer. So here's to the count down. 5 days to go

    Try to keep occupied on something else, If you can...

    You did good. Now try to think about something else, I know it's not really possible, but try.

    The worse time for me was when it's quiet and I'm trying to sleep. That's when the mind goes wild. Ice cream and slushies and popsicles seem to help the best, it's the cold.

    Bill

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    WOW

    I'm not sure where you are in Florida....., I'm in Lakeland.

    But I realy think you have gotten the run around, at least from my experience... But i'm no MD professional...

    Here's my expereince...

    Starting around October 2008, I had a slight irritation in my throat.., it wouldn't go away, nor did it get worse.. Finally around mid November I saw my GP. He gave me meds, didn't help.., then stronger meds Levaquin.., still no change. By now it's late December.. He set me up with my now ENT for an appointment on January 2 I believe.. it was a Friday and I had the day off.

    By then I like you had a swollen lump or lymphnode pop up behind and lower of my right ear.

    I visit my ENT, he scopes me, sends me for a CT, tells me to come right back.., he then tells me he was 90% sure I had squamous cell carcinoma, and more than likely HPV as I wasn't nor ever been a smoker.

    He set me up for the tonsils to come out that following Monday (the 2nd being a Friday).. He took the tonsils out, did a quick biopsy before consulting my wife and I after... STGIII SCC .. A week or so later confirmed HPV.

    Power port installed, various other stuff the next month or so.. Then sixteen weeks, four types of chemo and 35 days of rads thrown in...

    Clean and clear since....

     

    While your Dx might be totally different... to make you wait so long for results seems crazy to me...

    Thoughts and prayers,

    John

  • hwt
    hwt Member Posts: 2,328 Member
    Skiffin16 said:

    WOW

    I'm not sure where you are in Florida....., I'm in Lakeland.

    But I realy think you have gotten the run around, at least from my experience... But i'm no MD professional...

    Here's my expereince...

    Starting around October 2008, I had a slight irritation in my throat.., it wouldn't go away, nor did it get worse.. Finally around mid November I saw my GP. He gave me meds, didn't help.., then stronger meds Levaquin.., still no change. By now it's late December.. He set me up with my now ENT for an appointment on January 2 I believe.. it was a Friday and I had the day off.

    By then I like you had a swollen lump or lymphnode pop up behind and lower of my right ear.

    I visit my ENT, he scopes me, sends me for a CT, tells me to come right back.., he then tells me he was 90% sure I had squamous cell carcinoma, and more than likely HPV as I wasn't nor ever been a smoker.

    He set me up for the tonsils to come out that following Monday (the 2nd being a Friday).. He took the tonsils out, did a quick biopsy before consulting my wife and I after... STGIII SCC .. A week or so later confirmed HPV.

    Power port installed, various other stuff the next month or so.. Then sixteen weeks, four types of chemo and 35 days of rads thrown in...

    Clean and clear since....

     

    While your Dx might be totally different... to make you wait so long for results seems crazy to me...

    Thoughts and prayers,

    John

    Anxiety

    I don't think you should have to wait for next appt. I would make an attempt at calling to see if results are back, that is if you want to know.