Questions to ask Oncologist???

COOK1313
COOK1313 Member Posts: 28
in Lymphoma (Hodgkin and Non-Hodgkin) #1
I need advice for things to ask the oncologist I'll be seeing. To give a little insight, I have lymph nodes in my neck that are enlarged. One is just to the right of my throat (jugular node) and the second is a hard mass (retroauricular I believe is what they called it). These were confirmed on CT. I have had a third node (a second hard lump) that has come up since the last CT scan that is located under my ear lobe in the open space where the jaw and the skull meet. The ENT I was referred to said that because the nodes (the two he was aware of) are under the sternocleidomastoid muscle, he wasn't comfortable removing them to biopsy because of the high chance of damaging the muscle or nerves in the process. I saw my GP today to ask him about the latest lymph node and he said that he wants me to see an oncologist because I now have three enlarged lymph nodes (two of which are very hard), all on the same side of the neck and I also have "B Symptoms". When I first noticed the nodes, my GP had to feel closely to see which nodes I was referring to. Now, he said they are very prominent and raises serious concerns for him. The ENT I saw wanted to "watch and wait" but my GP today said that wasn't an option so he's referring me to an oncologist.

Has anyone seen an oncologist before a biopsy was done to confirm cancer? I have no clue what to ask this Dr. when I see him or what to expect for testing. I'm not a hand wringer so receiving news of cancer isn't something I will be unable to handle. That being said, I am the type however, that needs to know what to ask so I can be as informed as possible during the process. Thank you all for helping me with this!!!

Comments

  • vinny59
    vinny59 Member Posts: 1,036 Member
    #2
    biopsy
    That seems a little odd that you are seeing a oncologist first, I have been thru cancer twice, and the first time it was a lump on my neck, my GP referred me to a ENT doctor, who ordered a needle biopsy. Going to a oncologist won't hurt, they will probably do blood work and ask what type of symptom's you have, and schedule you for a needle biopsy,( which by the way does not hurt! lol) You really don't need to ask a lot of questions at this stage. It's more important to find out what those nodes are all about. Good luck Vinny
  • Michele23
    Michele23 Member Posts: 168
    #3
    Biopsy
    Hi,I had some nodes removed in that jaw/ear area and the nerve was severed during removal.So in turn part of my ear and face will forever be numb.Most likely they will take the easiest node for conformation and staging.Not sure if onc will be able to answer any questions until staging is done which took me almost a month.Do you have symptoms like weight loss,fatigue,or itching?Pretty much he will tell you what you may or may not be looking at.Good luck,Michele Dx95FNHL3
  • COOK1313
    COOK1313 Member Posts: 28
    #4
    Michele23 said:

    Biopsy
    Hi,I had some nodes removed in that jaw/ear area and the nerve was severed during removal.So in turn part of my ear and face will forever be numb.Most likely they will take the easiest node for conformation and staging.Not sure if onc will be able to answer any questions until staging is done which took me almost a month.Do you have symptoms like weight loss,fatigue,or itching?Pretty much he will tell you what you may or may not be looking at.Good luck,Michele Dx95FNHL3

    Biopsy
    The ENT was originally going to remove the node for biopsy. He said at my last appt, after seeing my CT scans, that he doesn't feel he can remove the nodes without damaging nerves or the muscle. The third node has come up since I saw him two weeks ago. I do have itchy skin, no appetite, I have lost weight but started getting extra calories from protein shakes and peanut butter (anything I can take in small amounts and not get sick). I have night sweats and physically have zero energy. I had a radiologist who did my mammo tell me I should talk to my GP about depression. My GP (who's undergrad is in psychology) said that depression doesn't cause multiple enlarged, hardened lymph nodes. He was as irritated by the comment as I was.
  • KC13167
    KC13167 Member Posts: 215
    #5
    COOK1313 said:

    Biopsy
    The ENT was originally going to remove the node for biopsy. He said at my last appt, after seeing my CT scans, that he doesn't feel he can remove the nodes without damaging nerves or the muscle. The third node has come up since I saw him two weeks ago. I do have itchy skin, no appetite, I have lost weight but started getting extra calories from protein shakes and peanut butter (anything I can take in small amounts and not get sick). I have night sweats and physically have zero energy. I had a radiologist who did my mammo tell me I should talk to my GP about depression. My GP (who's undergrad is in psychology) said that depression doesn't cause multiple enlarged, hardened lymph nodes. He was as irritated by the comment as I was.

    Previous Illness?
    Hi,
    I noticed that you've been a CSN member for almost a year now. Were you I'll before this event? Kellie
  • COOK1313
    COOK1313 Member Posts: 28
    #6
    KC13167 said:

    Previous Illness?
    Hi,
    I noticed that you've been a CSN member for almost a year now. Were you I'll before this event? Kellie

    A year...
    This started almost a year ago. The first ENT had a CT scan done and wanted to watch and wait. He had me go back for a follow up CT scan six months later. Unfortunately, there was an error in the report on the second scan. It stated that there had been no change in size. I KNEW it had gotten larger so I requested copies of the reports and took them to my GP. The ENT hadn't forwarded a copy of the first report so my GP went off of what the second report said (no change). In actuality, the node had gone from 1.7cm to 2.7cm so my GP sent me to a different ENT. I have an uncle and a cousin who have had NHL so my GP felt like things needed to be addressed because of how hard one node is.
  • COOK1313
    COOK1313 Member Posts: 28
    #7
    COOK1313 said:

    A year...
    This started almost a year ago. The first ENT had a CT scan done and wanted to watch and wait. He had me go back for a follow up CT scan six months later. Unfortunately, there was an error in the report on the second scan. It stated that there had been no change in size. I KNEW it had gotten larger so I requested copies of the reports and took them to my GP. The ENT hadn't forwarded a copy of the first report so my GP went off of what the second report said (no change). In actuality, the node had gone from 1.7cm to 2.7cm so my GP sent me to a different ENT. I have an uncle and a cousin who have had NHL so my GP felt like things needed to be addressed because of how hard one node is.

    Side note
    I should mention that my aunt is a nurse practitioner in Houston. Her sister-in-law is a pediatric oncologist at MD Anderson and she was the one who has been persistent that I get the node out. Unfortunately, they live 1500 miles away from me. Lol. When she felt the node in January when we were down visiting, she said it needed looked at ASAP because it could be metastasis related. if it weren't for them hounding me, I would have given up on it already because I keep getting bounced from one dr to the next. I know they're medical professionals but I also know sitting on the other side of the table is quite different and so it's easier to ask people for advice that have been where I'm at.

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