FNA or removal?

COOK1313
COOK1313 Member Posts: 28
in Lymphoma (Hodgkin and Non-Hodgkin) #1
I would like to get feedback from you all. I have had an enlarged lymph node that is very hard (doesn't hurt) and other "symptoms". The ENT sent me last May for a CT scan and found that I had a 1.2cm enlarged jugulodigastric node. My symptoms gradually increased and in October I went back to my GP and he said that he didn't get test results from the ENT but felt that since 5 months had passed, he would have a follow up scan done. They called me and said that the scan results said there had been no change in the size since the May scan. I have copies of the reports and now the muscles around the node are strained when I move it in certain directions, I can't eat, have headaches, etc. I took the copies of the reports with me last week when I went back to my GP because I am so tired my husband is extremely worried. I questioned to my GP why the test results said there was no change in size but the measurement was 1.2 in May and 2.2 in October. He called to verify that it had grown 1cm from May to October. Now he is sending me for another CT tomorrow and said that if it has grown more than 3mm, he wants to send me to a different ENT to have either a FNA biopsy or have it removed. My uncle did have NHL and it wasn't until this last appointment that lymphoma became real because my GP said that there were too many "signs possibly pointing to lymphoma". I'm tired of paying Dr.'s bills and getting no where. Should I just go ahead and say I want the node removed? I have a step-cousin who had NHL in his mid-twenties and he said his was in the same area and his FNA came back inconclusive and his NHL wasn't found until they removed it. I'm just not sure what step to take next seeing as how I'm having to double check the results every time they send me. Any advice is greatly appreciated!!!

Comments

  • donald51
    donald51 Member Posts: 62
    #2
    FNA or removal?
    Hello COOK1313,
    First let me welcome you to the board. I am sorry to hear of the confusion of your situation. It is not rare. From your description of symptoms I think it would be wiser for your GP to refer you to an oncologist rather than an ENT. The matter of having an FNA vs. a surgical biopsy is a matter of choice. I read after having my surgical biopsy that having said procedure was not recommended. Again this was one individual’s opinion. My surgeon as well as my oncologist told me that they can't always get enough to analyze from an FNA for a conclusive diagnosis. I had the surgery (in the left armpit)and was able to find out the same day that it was lymphoma and of the follicular type, within three days I had the results of grade and stage of the cancer. The only other thing I can say regarding pros and cons about the two procedures is that with the surgical type you deal with a little soreness from the scar tissue for a while. It has been three years since and I no longer deal with that issue. I will pray that you not have such a need but, if you do, my suggestion would be to find a good oncologist at teaching hospital (university)and has the ability to offer more than the common chemo and radiation treatment.
    I, as many others here will be glad to offer you all and any help we can. Hope all goes well for you.
    Stay strong and positive
    Don
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #3
    Hi,
    I also want to welcome you to the group. Here you will find answers to questions and a warm loving group of people to lend support. My cancer was diagnosed and staged after one of the tumors in my groin was surgically removed and sent to pathology. I was diagnosed with Follicular Non-Hodgkins Lymphoma..Grade2-Stage3-TypeA. I've finished 6 rounds of CVP-R chemo as of Dec 14th and on Feb 14th started my Rituxan maint. The plan is one Rituxan infusion every other month for the next 2 years. I'll keep positive thoughts that your swollen node will be non-cancerous. Please keep us informed on what you find out.
    Best wishes...Sue (FNHL-2-3A-6/10)
    P.S. You can click on our picture and it will take you to a page that tells all about what we have gone through. Some folks haven't done the "about you" information page, but many have.
  • COOK1313
    COOK1313 Member Posts: 28
    #4
    donald51 said:

    FNA or removal?
    Hello COOK1313,
    First let me welcome you to the board. I am sorry to hear of the confusion of your situation. It is not rare. From your description of symptoms I think it would be wiser for your GP to refer you to an oncologist rather than an ENT. The matter of having an FNA vs. a surgical biopsy is a matter of choice. I read after having my surgical biopsy that having said procedure was not recommended. Again this was one individual’s opinion. My surgeon as well as my oncologist told me that they can't always get enough to analyze from an FNA for a conclusive diagnosis. I had the surgery (in the left armpit)and was able to find out the same day that it was lymphoma and of the follicular type, within three days I had the results of grade and stage of the cancer. The only other thing I can say regarding pros and cons about the two procedures is that with the surgical type you deal with a little soreness from the scar tissue for a while. It has been three years since and I no longer deal with that issue. I will pray that you not have such a need but, if you do, my suggestion would be to find a good oncologist at teaching hospital (university)and has the ability to offer more than the common chemo and radiation treatment.
    I, as many others here will be glad to offer you all and any help we can. Hope all goes well for you.
    Stay strong and positive
    Don

    Thanks Don! If it wasn't for
    Thanks Don! If it wasn't for the headaches here lately, I probably would have put off going back to my GP. I told my husband that it feels like the headache you get after you exercise really hard but it starts right where the node is. I'm not one to go looking for something that isn't there (the majority of my family think they have pneumonia when it's a cold). My husband knows this about me and noticed small changes. I have little blood spots that began popping up 4 or 5 months ago and I told him it's because I'm so fair skinned. We were out and about last week and was so tired I had to go sit in the car while he finished grocery shopping. When he got in the car he said if I didn't call the GP he was. My husband's aunt is a nurse practitioner and my husband began asking her questions. He was actually the one who found the node last spring when he was rubbing my neck. The ENT that my GP will send me to if the node has grown more then 3mm is at a teaching hospital so your comment makes me feel better. My husband actually made the comment today that he would prefer I be sent to an Oncologist after this. His grandmother (who was a nurse) died from Ovarian Cancer because the doctor's told her that her symptoms weren't from anything serious, it was that she needed more exercise. The woman water skied into her late 60's, ball room danced until 6 months before she passed away, and did 100 sit-ups every morning. My husband's aunt finally ordered a CT scan and MRI on her abdomen. The pain was because the cancer had squeezed her large intestine to the size of a pencil. My husband is just terrified now that I'm going to deal with that. If it hadn't been for the radiologist missing the doubling of the node, I'd tell him he's worrying over nothing. So, can I be seen by an oncologist without a diagnosis? My husband asked today why they can't just send me to an oncologist to rule it in or out. I told him because I don't have cancer so why would a cancer dr see me. Lol. I really appreciate the feedback. If I ask anyone in my family about this stuff I'll get "The sky is falling" and I don't deal well with that. Lol
  • donald51
    donald51 Member Posts: 62
    #5
    COOK1313 said:

    Thanks Don! If it wasn't for
    Thanks Don! If it wasn't for the headaches here lately, I probably would have put off going back to my GP. I told my husband that it feels like the headache you get after you exercise really hard but it starts right where the node is. I'm not one to go looking for something that isn't there (the majority of my family think they have pneumonia when it's a cold). My husband knows this about me and noticed small changes. I have little blood spots that began popping up 4 or 5 months ago and I told him it's because I'm so fair skinned. We were out and about last week and was so tired I had to go sit in the car while he finished grocery shopping. When he got in the car he said if I didn't call the GP he was. My husband's aunt is a nurse practitioner and my husband began asking her questions. He was actually the one who found the node last spring when he was rubbing my neck. The ENT that my GP will send me to if the node has grown more then 3mm is at a teaching hospital so your comment makes me feel better. My husband actually made the comment today that he would prefer I be sent to an Oncologist after this. His grandmother (who was a nurse) died from Ovarian Cancer because the doctor's told her that her symptoms weren't from anything serious, it was that she needed more exercise. The woman water skied into her late 60's, ball room danced until 6 months before she passed away, and did 100 sit-ups every morning. My husband's aunt finally ordered a CT scan and MRI on her abdomen. The pain was because the cancer had squeezed her large intestine to the size of a pencil. My husband is just terrified now that I'm going to deal with that. If it hadn't been for the radiologist missing the doubling of the node, I'd tell him he's worrying over nothing. So, can I be seen by an oncologist without a diagnosis? My husband asked today why they can't just send me to an oncologist to rule it in or out. I told him because I don't have cancer so why would a cancer dr see me. Lol. I really appreciate the feedback. If I ask anyone in my family about this stuff I'll get "The sky is falling" and I don't deal well with that. Lol

    "The sky is falling"
    Hey COOK,
    When it comes to your body conditions and the way you feel every precaution is justifiable. So, if any one lays the "sky is falling" complex on you it is most likely they suffer "the chicken little syndrome". I'm sure if the situation were reversed they would find themselves in the same proverbial boat that we all are in when we find lumps. It is good that you have a caring and observant husband! It would be nice if oncologists would see patients without referrals but it just does not happen. If it turns out that your node has increased in size then they will want to get a pathological diagnosis with an fna or open surgical biopsy. I was seen by a gp who put me on antibiotics for 2 weeks. Then went back with no change in size of node and was referred to a general surgeon who told me I probably had nothing to worry about. He did the surgical biopsy and I awoke to my wife in tears telling me I had cancer. By the time I got home that day I was already searching for an alternative treatment. I did not want chemo and radiation! I found out about Zevalin and said that’s what I want and got it. I have been 3 years cancer free this coming July. You, having family members that are in the medical field can be very beneficial for you. Utilize every bit of information you can get. "Petechia"! That’s the name for the blood spots, you can look up the causes on wikipedia.
    I wish you well and let me know what you find out.
    Stay strong and positive†
    Don
    Petechia
  • COOK1313
    COOK1313 Member Posts: 28
    #6
    allmost60 said:

    Hi,
    I also want to welcome you to the group. Here you will find answers to questions and a warm loving group of people to lend support. My cancer was diagnosed and staged after one of the tumors in my groin was surgically removed and sent to pathology. I was diagnosed with Follicular Non-Hodgkins Lymphoma..Grade2-Stage3-TypeA. I've finished 6 rounds of CVP-R chemo as of Dec 14th and on Feb 14th started my Rituxan maint. The plan is one Rituxan infusion every other month for the next 2 years. I'll keep positive thoughts that your swollen node will be non-cancerous. Please keep us informed on what you find out.
    Best wishes...Sue (FNHL-2-3A-6/10)
    P.S. You can click on our picture and it will take you to a page that tells all about what we have gone through. Some folks haven't done the "about you" information page, but many have.

    Thank you!
    My husband's aunt wants me to have the node removed and biopsied so we may go that route. Still in limbo. lol. I had another scan today and was able to get a copy of the report tonight (I graduated high school with the son of a lady that works in the lab so she called me to tell me I could stop by and pick up a copy since the Radiologist signed off). The node was 2.2cm in October and is at 2.6 now with an additional lymph node on the higher end of normal enlargement that wasn't identified in the previous scan. We'll see what my GP says tomorrow after he sees the results! Thanks for all the wonderful input!!!

    Blessings,
    Heather
  • COOK1313
    COOK1313 Member Posts: 28
    #7
    donald51 said:

    "The sky is falling"
    Hey COOK,
    When it comes to your body conditions and the way you feel every precaution is justifiable. So, if any one lays the "sky is falling" complex on you it is most likely they suffer "the chicken little syndrome". I'm sure if the situation were reversed they would find themselves in the same proverbial boat that we all are in when we find lumps. It is good that you have a caring and observant husband! It would be nice if oncologists would see patients without referrals but it just does not happen. If it turns out that your node has increased in size then they will want to get a pathological diagnosis with an fna or open surgical biopsy. I was seen by a gp who put me on antibiotics for 2 weeks. Then went back with no change in size of node and was referred to a general surgeon who told me I probably had nothing to worry about. He did the surgical biopsy and I awoke to my wife in tears telling me I had cancer. By the time I got home that day I was already searching for an alternative treatment. I did not want chemo and radiation! I found out about Zevalin and said that’s what I want and got it. I have been 3 years cancer free this coming July. You, having family members that are in the medical field can be very beneficial for you. Utilize every bit of information you can get. "Petechia"! That’s the name for the blood spots, you can look up the causes on wikipedia.
    I wish you well and let me know what you find out.
    Stay strong and positive†
    Don
    Petechia

    Zevalin
    It is VERY ironic that you posted about this!!! My best friend is one of the few people who know about my tests and I was talking to her last week about the node. She works as a Project Manager for Baxter Pharmaceuticals and told me that if it does end up being NHL, to remember the drug Zevalin. She said that insurance companies HATE paying for it but it is a shorter treatment and my body won't have to endure the chemo and radiation. To actually hear from someone that has taken this as their treatment is so reassuring! It sounds silly I know, but I'm in outside sales and my best friend's wedding is in June. Being bald from treatment is just one of the things I'd rather avoid if possible. I heard a man say once that it wasn't the cancer that killed his wife, it was the radiation. Those in my family who have had cancer have all had chemo/radiation and are cancer free but at 33, I'd rather avoid it if there are other avenues. My scan today showed the node has grown 4mm since October (I'm happy with that. It grew 1cm from May to October). I should hear from my GP tomorrow about what's next. Thanks for all the wonderful information. I truly appreciate it!

    Blessings,
    H
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #8
    COOK1313 said:

    Thank you!
    My husband's aunt wants me to have the node removed and biopsied so we may go that route. Still in limbo. lol. I had another scan today and was able to get a copy of the report tonight (I graduated high school with the son of a lady that works in the lab so she called me to tell me I could stop by and pick up a copy since the Radiologist signed off). The node was 2.2cm in October and is at 2.6 now with an additional lymph node on the higher end of normal enlargement that wasn't identified in the previous scan. We'll see what my GP says tomorrow after he sees the results! Thanks for all the wonderful input!!!

    Blessings,
    Heather

    Lymph nodes
    Heather,
    Be sure to post back what your Dr. finds. I was diagnosed in May 2010 with follicular non hOdgkins lymphoma and currently in remission. The people on this board will be here to assist whenever they can. Good luck,John(FNHL-1-4A-5/10)
  • CountryGal7557
    CountryGal7557 Member Posts: 164 Member
    #9
    COOK1313 said:

    Thank you!
    My husband's aunt wants me to have the node removed and biopsied so we may go that route. Still in limbo. lol. I had another scan today and was able to get a copy of the report tonight (I graduated high school with the son of a lady that works in the lab so she called me to tell me I could stop by and pick up a copy since the Radiologist signed off). The node was 2.2cm in October and is at 2.6 now with an additional lymph node on the higher end of normal enlargement that wasn't identified in the previous scan. We'll see what my GP says tomorrow after he sees the results! Thanks for all the wonderful input!!!

    Blessings,
    Heather

    Zevalin or B-R
    Heather....I hope you will consider having the lymphnode surgically removed so that the oncologist will have enough 'sample' to work with on deciding/determining the best treatmetn plan for you. Everyone is unique in these journeys.

    You mentioned a concern over loosing your hair because of an upcoming June wedding. If Zevalin isn't an option for you, please ask to have the B-R treatment - it seems to be fairly new in 2010 and the bonus is, you won't loose your hair!!

    My oncologist didn't mention Zevalin, but I'm guessing my scenario didn't match that treatment plan. Everybody's NHL is different and that is why it's important for the oncologist to have enough 'sample' to suggest the best treatment plan for you.

    Good Luck!
    Hugs!
    Janelle
  • COOK1313
    COOK1313 Member Posts: 28
    #10
    CountryGal7557 said:

    Zevalin or B-R
    Heather....I hope you will consider having the lymphnode surgically removed so that the oncologist will have enough 'sample' to work with on deciding/determining the best treatmetn plan for you. Everyone is unique in these journeys.

    You mentioned a concern over loosing your hair because of an upcoming June wedding. If Zevalin isn't an option for you, please ask to have the B-R treatment - it seems to be fairly new in 2010 and the bonus is, you won't loose your hair!!

    My oncologist didn't mention Zevalin, but I'm guessing my scenario didn't match that treatment plan. Everybody's NHL is different and that is why it's important for the oncologist to have enough 'sample' to suggest the best treatment plan for you.

    Good Luck!
    Hugs!
    Janelle

    Thank you!
    I go to the ENT next week. Was supposed to see one yesterday but found out he's not in my network. I'm calling tomorrow to ask about the details of the appointment. I have been tempted to buy a soft bristle hair brush to use on my skin because I itch incessantly. I have a fair complexion so I've had my fair share of sunburns. That is what my itch feels like. It's the worst on my hands, feet, and legs (from the knees down). Though it seems to be increasing on my torso. I have little pimple like bumps on me. Was going to see a dermatologist about the itching and bumps but can't get in til MAY!!! Any chance they're related? I do very little symptom surfing. LOL. I either come here or call my husband's aunt. I am calling the ENT to ask about removing the node. I don't have the patience to wait a month to get it out after all the time that passed before they realized it had grown. I joke about the old saying "when your palms itch it means you're coming into money". I should be getting millions if that were true! ; )
    Thanks so much for the info! It really is helpful!!!

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