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Forum Name: Lymphoma

Question: lymph nodes in neck again


 goatlady - Tue Feb 28, 2006 2:09 pm

had HD in 1998 (neck only) relapsed in 2002 stage IIIB. all nodes approx. 1-1.5 cm. (never bulky) Felt great up until a few months ago. fatigue, fevers, little weight loss. Recent ct of neck showed numerous small nodes in the internal jugular, anterior carotid,
posterior neck. increased since scan of 9/05. all approx. 7-10 mm. Now my question, my onc.saids they are too small to biopsy,
but my pri.dr wants me to go to a new onc. all other blood tests for other diseases and infections are negative. He said I should get a petscan (last one was done in May 2005). I was told last year that I would need a stemcell transplant, but that was put off because the nodes didnt grow(only had 1 small posterior neck lymph node then.. In 2002 I went throught the same thing, the lymphoma spread into my chest, ab, and pelvis. Can a petscan detect cancer in these small lymph nodes? I also have the same pain by my left kidney (spleen removed have acessory one that has changed) have severe back pain and right leg pain. Get fevers of 100. Im afraid they will not grow like last time and spread into my chest and ab. Recent ctscan of chest revealed no major lymphadenopathy but some pleural thickening and scarring. can small nodes like these in the neck be biopsied?
thank you for you help.
 Theresa Jones, RN - Sun Mar 05, 2006 6:28 pm

User avatar Hi goatlady,
If your primary physician is suggesting a PET Scan and this diagnostic test is both accessible and available to you then I would suggest that you follow your primary physicians advice. Pet Scans may assist physicians in identifying alterations suggesting the presence of disease before anatomical changes are apparent by other diagnostics studies.
Sincerely,
Theresa Jones, RN
 goatlady - Mon Mar 06, 2006 10:21 am

thank you Theresa..I agree. My pri.dr.will be talking to another onc. for me today. My current onc.saids my esr isnt going up.
When I had early HD in 1998 my esr was normal. But in 2002
it was normal until I was stage III, then it shot up to 86.
Now, my LD is elevated not my esr. All others blood work for other ailments are negative. I am having the night sweats (not drenching like before) but have them. My left arm goes numb during the night if I sleep on my left side. So, something is crimping in my neck. My biggest test was yesterday when I tried to walk and run. I was able to run my usual 5-7 miles after chemo, but now cant seem to do 2. For some reason I feel like Im going to fall down, my legs get weak. Thank you again for your response and I will let you know what happens.
Mary Beth
 goatlady - Tue Mar 07, 2006 8:30 am

okay. I still havent heard from my original onc. or the new one yet. I faxed my ctscan report to her last Thurs. She has not
called me and my pri.dr has called a new one (havent heard anything yet) Should I call my treating onc. today and she what she suggests? Sometimes she gets mad if you bother her and
if she finds out my pri.dr contacted another onc. (which I know she will find out because they all communicate) she is going
to get angry at me. She is the one that saids a petscan will not
diagnose hd in these small nodes, but my pri.dr wants it done and biopsied. I know you have told me that a petscan would be helpful, but before I call her (and get reprimanded) I want to make sure Im doing the right thing. Just reading the other post, looks
like shotty nodes might not give a diagnosis. I have a few of them on my left side of neck and posterior, I get headaches from them by the oppicital area of my neck, like before. To me honest with you, I feel Im bothering my dr.and wasting everyones time, thats how they make me feel. Been there before and don't want to go there again and have stage III. My question, if I get a petscan now will it be helpful in detecting disease in these small nodes or wait, since ins. will not allow me to keep having them Im sure.
Thank you kindly for your help, it is much appreciated. About my ld..its 190.
Mary Beth
 goatlady - Tue Mar 07, 2006 11:44 am

I was right. just heard from my onc. she said do nothing.
she will decide on future scans when the disease progresses,
the nodes are small to biopsy. next scans will be in 6 months.
she was angry that my pri.dr.did a neck scan. even though the
nodes have grown a little bit had have soft tissue changes,
she said there is nothing that can be done. Now what do I do?
My pri. dr. is supposed to speack to a new onc. I guess wait to see what they say? This is what I went through in 2002 and no-one listened to me, the nodes in my neck never grow to 1cm.
just spread. I left that onc. (thank goodness) and was then
diagnosed at stage III. Im so confused. thanks for listening to me.
Mary Beth
 Theresa Jones, RN - Wed Mar 08, 2006 9:33 am

User avatar Hi Mary Beth,
My apologies for the delayed reply. Here is my opinion on the matter. You, above anyone, know your own body. The experience that you have had with cancer in the past, the symptoms that presented, would make you more alert and aware when something is array. Sometimes people (any profession) are straight or closed minded, not willing to LISTEN, accept, or be receptive to intervention or what they would consider "interference" by another. This is not to say they are right or wrong, just narrow minded (if that makes sense). Now to my view, your primary physician seems concerned about your health and in all honesty, also seems to be listening to you. If a PET Scan is warranted in his/her opinion based on symptoms you are experiencing, then there should not be a matter regarding a professional becoming angry, it's a matter of what's best for the patient. I do not see anything wrong with concern for a patient, a physician ordering what he or she deems medically necessary, nor anything wrong with a second opinion. As for the Lactate Dehydrogenase levels, elevations are seen in conditions aside from, for example lymphoma, therefore they may be nonspecific in the initial diagnosis, however, this test is used monitoring diagnosed disease and elevations may give an indication of suspected recurrence. I hope you will consider posting updates as your time permits.
Sincerely,
Theresa Jones, RN
 goatlady - Wed Mar 08, 2006 10:43 am

thank you again Theresa. You are very helpful. Im awaiting my pri.dr to talk to this new onc. I agree that I should follow my instincts as I know how I feel. I feel no-one will help if Im in early disease and the nodes do not qualify for "medically" biopsy.
My onc. "Dr.H" nurse said this to me "when the disease progresses, Dr. H will be on top of it with diagnosing you and
doing the needed scans, you are to say NO to any dr.who wants to do anything right now..do you understand?..if a dr.has a problem with that and doesnt listen to your NO , then they can call Dr.H"... Dr. H. works in a satillite office of a major cancer center, I went to a onc. in 2002 (her boss) who diagnosed me then, if I call the main office they will tell Dr.H. and I will be back to where I am now, she calls the shots. However she works at this treatment center not at the main center. I will have to switch centers. I am having headaches is the back of my head (same as before) and my husband rubs my neck, yesterday he said there is a lump at the bottome of my skull, I said no kidding. In Sept. it was 11 mm, but the new report didnt indicate what it is now.
The occiptal area gives me headaches. I shoud be hearing from my pri.dr today he is good so Im sure things will work out.
Also, every test you can imagine has been run on my blood for numerous diseases and all are negative. No infection, no
arthristis, no virus, no lyme etc. I'll let you know how things go.thank you so much, so very much.
Mary Beth
 goatlady - Fri Mar 10, 2006 3:44 pm

Update..heard from new onc. my visit is on 3/24 (hour consult)
he reviewed all my records and wants to see me. I want to thank you for your help. You gave me that extra push even though I was going to keep on going, your responses helped. Whatever it is, I will deal with it. Been there done that. Just want to get better and be able to run and exercise and make it through the day and feel good again. I know I will. I hope my posts also help other people too. Listen to your body and get answers. Having switched pri.care drs also helped me and I have learned over the years that drs.are not all the same. (no punt intended) Thanks..talk to you all soon.
Mary Beth
 goatlady - Tue Mar 21, 2006 10:08 am

Can you have lymphoma without anemia? when I had HD stage II, I didnt have anemia, but the 2nd time stage III, I did. Now,
my hemo and rbc go up and down. Also, what causes brain fog in cancer? So many patients say the same thing, they cant think right and feel sluggish and foggy? Eveything seems to be a chore to do, even the simple things. I getted tired so easy and my muscles feel so weak. what causes you to feel so drained?
feels like the flu. thank you,
Mary Beth
 Theresa Jones, RN - Thu Mar 23, 2006 7:57 pm

User avatar Hi Mary Beth,
I am sincerely glad to hear that you have an appointment with another oncologist. The problem with weakness, fatigue, and the foggy feeling associated with cancer may be due to the fact of stress, dealing with the diagnosis in itself, numerous decisions, treatment, prognosis, not to mention that cancer cells require much more energy and nutrients than normal cells essentially stealing them blind (so to speak). I hope when your time permits you will post an update.
Sincerely,
Theresa Jones, RN
 goatlady - Fri Mar 24, 2006 1:05 pm

saw the new onc.this morning. He said I should have had and will be having a petscan done. Small nodes will not show on a ctscan and having numerous ctscans are not good. He ran
alot of blood tests too. He felt the nodes in my neck and also
found some by the trapius area that did not show on the ctscan.
my stomach is tender and he hears something in my lungs (yes I cough up phlegm). I lost some weight this past month, but the
fatigue is the worse. He is good, very knowledgeable.he knows
my history too. If my hd is back I will need a stem cell transplant, auto one. I was prepared for that and have all the info already on it. So...petscan will be done shortly. I thank you too, for giving me answers and for being there. I'll let you know the results of my tests when they are all done...THANK YOU AGAIN !!!
Mary Beth
 goatlady - Fri Apr 07, 2006 7:25 am

Hi All: had my petscan. the reports state that there is (mild) not
significant uptake to suggest tumor.???? Is there cancer or not?
Also there is a 2 cm lesion by left kidney (where my pain is alongwith back and leg pain>) that needs to be further evaluated.
On my past petscan it reported no activity, the ones from 2002 stated mild uptake in chest, but hyper activity in abdomen and
pelvis, they included suv #. this report does not. So, I am
thinking that maybe my onc. will be looking into the suv # and
see where the mild uptake is? I guess the lymphoma (as before) is in a indolent state and not declared itself again. which I know is better than aggressive with high suv #. My onc. was sure
that the nodes he felt in my neck would show up. they are
bothering me and the pain runs into my left shoulder. Im still
get the night sweats, but have not lost anymore weight, after
loosing 6 lbs. which I didnt or should not have lost. My blood
was good, esr normal, cooper on the high end, and albumin proteins a little elevated and the mch/mcv elevated. low
lymphocyctes (don't have a spleen) and low monocytes.
So no big problems there. any thoughts?
thank you so much.
Mary Beth
 goatlady - Thu Oct 12, 2006 9:13 am

had hd in 1998 stage 2, 2002 stage 3b. petsans have been negative until last week. there is increased activity in thoracic aorta and mediastinum considered "brown fat" also enlarged
liver and changes in splenectomy. have elevated alp blood test and just mild anemia. in 2002 I had hodgkins in mediastinum,
hepatic, para-aorta and pelvis. current onc.not familiar with my past and considers me early stage 2. should I be somewhat
concerned? thinking about contacting my original onc.who
diagnosed me in 2002 as prior to 2002 I went undiagnosed with
another onc. have pain in upper back, abdominal (left side)
and nauseu. fevers some days with mild night sweats.
(past menopause).. have neuropathy and fatigue. can they be sure this is brown fat or lymphoma?
thank you,
Mary

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