Three weeks ago I had a sharp pain in my right ingunial area (Lymph node near where my leg connects to my torso). It wasnt until i felt the pain that I felt a lump in my lymph node. Went to my faimily doctor and they took me right over to have a CT scan. Doctor gave me some pain medicine. He refered me to a specialist for the remaining of this problem.
Last thrusday I met with the specialist and he read me the CT results. 3.4 x 2.5 cm node. He recomended a biopsy for this Thursday 10-25-07. The results stated that the finding were suspicious for lymphoma.
Everything feels like it is moving too fast. My pain has subsided. Since neither doctor did anytype of bloodwork, I am not sure I want this specialist to cut on me yet. I call and delayed the biopsy for a few weeks. I just wanna see if this lypmph node goes down any.
So I have several questions for everyone.
If I do have lymphoma, what should I be looking for?
What are the consquences of having a node removed?
If it is not Lymphoma, how long for this swelling to go down?
Wow, I'd say they're moving quick too.
usually they give the patient a round of antibiotics first before they do a biopsy to see if it's an infection or bacterial problem.
THEN if it doesn't go down, they do a biopsy.
scans of any type can NOT detect if a mass is a malignancy. ONLY a biopsy can detect a malignancy for sure, and sometimes they are misdiagnosed.
so it's always good to always get a 2nd opinon and even a 3rd opinion if the patient wants it.
the first pathologist who will be reading the biopsy may not detect a malignancy because there's over 30 different subtypes of lymphomas. whereas there's only one hodgkins lymphoma.
so a 2nd person to read it from a seperate lab can make SURE nothing was missed. there's a better chance of a non misdiagnosis by having it read a 2nd time.
there's 3 ways they can biopsy it:
there's excisional which they do by removing the entire mass, or they can take a piece of the tissue and view it or they can do a needle biopsy which is called a fine needle aspiration.
they don't recommend a needle biopsy because they're not 100% accurate, one because enough tissue might not have been taken, 2nd, the cores they took out may not have retrieved any of the bad cells.
I"d opt for the excisional.
some masses can not be reached and are hard to get at, so they have no choice other than to use a needle biopsy vs an excisional.
my spouse is worrying too that the idea of having to remove the entire lymph node on my neck may be more harmful than good because he says I need my lymph nodes. I dont' agree with that statement because we have many other lymph nodes to do the job. our body won't miss one of them.
it's far better to know you have one less lymph node and know if you have a malignancy or not so they can treat it.
I don't see the harm of having the biopsy.
if you feel you need more time for yourself to accept the possiblity you may have a malignancy, then you can wait a week.
waiting a week or two longer shouldn't make a difference at this point.
because the stages they have to take, if it's a malignancy is long.
most dr's say the percentage of it being a malignancy is small because there's so many diseases that can cause a lymph node to swell.
cat scratch disease, infections, bacteria, etc.
the radiologist who read my first cat scan and first mri report back in 1997, thought my node looked highly suspicious for a form of lymphoma and they suggested biopsy immediately.
just to read that paragraph on the report freaked me out!
but when they did the biopsy, it wound up it was NOT a lymphoma after all.
I even got a 2nd opinion by the dr's choice. He sent it away to another lab without even asking me if I wanted it or not. so you see? it's good to get a 2nd opinion. they expect you to.
plus you see, the radiologist that reads the scans aren't always right either.
the only way to know is thru a biopsy.
I really hope it's not a lymphoma.
take your time if you need it.
Thank you very much for the reposnse Linda. I am convinced I ned to get a second opinion. My Doctor called today and was concerned that I had cancelled Thursday. He wanted to meet with me Sat. morning to discuss the CT report again and recomend a different specialist to get a second opinion. I also am planning on going to an alternative doctor.
I am really concerned I didn't get any antibiotics or blood work first. He did say that i did not have just one lymph nodes swollen, that I had several swollen. He also stated 4-5 weeks was too long to put it off.
I am also not sure about the effect of having a lymph node removed. They are there for a reason, but I dont know what might happend in the future by not having a lymph node. I am also concern about any side effects removing the Lymph node might cause.
JB, the fact that your dr is so concerned and is saying not to wait very long to check this out has me worried.
what can an alternative dr do at this point?
I searched to see if there's any risks to removing a lymph node anywhere in the body and nothing is showing up. the only risk's they spoke of is this:
With this test there is a small chance of infection or bleeding. Additionally, there is a moderate risk of nerve injury, localized paralysis, or numbness when the biopsy is performed on a lymph node close to nerves.
so basically they're saying this risk is only if it's close to nerves.
I do recall that when woman had mastectomies to remove their breasts from breast CA that they'd also remove multiple nodes to see if they were malignant, not just one. which could lead to the arm becoming swollen because the lymph channel wasn't able to work properly after removing them.
If there are multiple nodes that are swollen and malignant, they don't cure the cancer by removing all the nodes, they only remove ONE to test it and they may only take a piece of it and not the entire node. they have to use a form of therapy to erradicate the malignancy, not remove all the nodes.
is this what you're worried about up the road?
that it may effect your leg? or is it the immune system you're worried about being effected?
I could not find anywhere that by removing one node would effect your body up the road.
are you going to meet with this dr on sat. to go over the results? if so, can you ask him why he is not recommending antibiotics that could possibly make the nodes go down? this way they could tell then if you'd need the biopsy or not?
another question I have for you is: do you not want to take an antibiotic? some people don't like to take them. Is this why you want to see a holistic dr. instead?
I'm curious to see what their approach would be.
have you found one yet?
I set up a visit with another Specialist and it's on Nov 5th. If the second doctor recommends removal of the node, its what I will do. I have a copy of my CT scan for him to look at.
The information you have above is very helpful concerning removing the lymph node. Sounds like the risk is minimal. I am not worried about the treatment later if it turns up positive. I guess I would do whatever needs to be done at that point. The specialist stated there was a medication I would start taking.
I asked my doctor about antibiotics and he shook his head and said the only real way to know is to do a biopsy. That is what has me concerned. If the test is negative, what would be the next step? If its antibiotics, why not try that first?
The reason to look at an alternative doctor would be to understand the concerns they have with removing a lymph node.
Thank you very much for all the information Lintek.
My pleasure JB.
just talking about things and weighting options can be a relief to some.
you mentioned in your first post that after you had the cat scan performed you went to the "specialtist" to go over the results. Not your family dr.
what type of specialtist were you referring to?
are you seeing an oncologist? because you also mentioned this specialtist already discussed with you about putting you on a particular medication.
what is this medication?
I can't wait till the 5th is here so you can get this taken care of. just for peace of mind.
I went for my cat scan the other day and I'm going this morning to find out the results. I'm very anxious to find out what the radiologist found and whether it's just scar tissue from the previous biopsy performed so long ago? or is it just an inflammatory process?
I too wanted to know what caused my lymph node to swell so large back then if it wasn't a malignancy. doesnt' everyone want to know why? I think we all deserve a reason why if there is one.
I'm anxious also to find out what's causing your's to swell if it's not a lymphoma.
Mine went away when he took it out and I never in all my life thought it would come back. so what the heck is causing this thing to swell I ask myself?
he sent me to a disease specialtist, (I forgot their title), but he never did tell me what it was. he only did one blood test for aids, and I never went back to him.
so don't rely on them being able to give you a reason why it's swelling if it's not a lymphoma. (just to give you heads up on that)
because you mentioned in your post you want to know what's making it swell.
all we can do now is wait for both of us.
thanks for your help too JB.
you're great support for me to be able to discuss these matters with you.
Hi, I just wanted to let you know that I did a similar search and discovered that there is one more serious risk. It is called lymphoedema. Apparently, it's not as common as a result of biopsy but it can still happen nevertheless, and it appears to be chronic. You should do a little reading about it.
I think you'll find that no one can say definitively whether taking one node completely out will cause lymphadema. I don't know how many they take during a retropubic prostatectomy but I can tell you that it caused mild lymphadema in my left leg. That was seven years ago and I'm still fighting it to this day.
I had that very discussion this morning with the surgeon who removed one on the left side of my neck. He took a chunk of it for pathology several weeks ago but both of the labs that looked at the 16 slides were unable to tell us which type of lymphoma I have, other than one of the B types. So today I had to go in the outpatient unit to get one completely pulled out to get enough tissue for a second look.
He didn't want to take the big one in my left armpit because of the "probability" of messing up my arm. I told him I was equally worried about getting a big neck from having a complete node yanked from that location. Time will tell. As I sit here about 8 hours after surgery, it's a bit painful and puffed up but nothing to get excited about ... yet.
I've had all the ultrasounds, blood tests, CT and PET scans and bone marrow biopsies and as has been posted many times ... the only way to know for sure if it's lymphoma is to have a node biopsy done. I know I have lymphoma, I know I'm at stage 2 with bone marrow clear, but until I get the results of today's test I still don't know what grade it is.
Linda the specialist was an oncologist and a surgeon. He stated it was his job to prove the CAT scan’s statement that it might be lymphoma was wrong. He stated the only he could do that was to take a node. He also mention that most lymphoma was treatable by a certain medicine. I think it started with a L. By the time he mentioned that I was concerned he was going to cut on me without test I completely forgot the name of the medication. I also worry that I do not know the cause that made my node swell.
Heretohelp99 I knew that there might be complications, but wasn’t sure it had a name. I will read about it.
Mudrunner, I hope everything turns out ok with the test. I know there are very many different kinds of Lymphoma. How long has the node on your neck been swollen? I hope you can keep us updated.
You all are a great help to me and I appreciate the support this site has given me.
As for my test….
As stated I went to get a second Opinion with another doctor on Nov 5th. He was also an oncologist . He had me do a questionnaire and then looked at a copy of my CAT scan. He also felt of my swollen nodes. The largest node , which was easiest to feel the first time I went to the doctor, had significantly dropped in size. It was hard to find the exact point it was swollen. Other nodes near my leg were still swollen and he could feel them.
After the examination, he stated he didn’t believe a biopsy was needed at this time. He stated that he wanted to take some blood and then for me to come back and see him in a month. After a few questions he stated he thought my body was doing what it was supposed to do when Fighting an Infection, but he couldn’t be positive. He did state that in the overall scheme of things one month wouldn’t make a big difference if it was lymphoma.
Now its been three days since then seond opinion and I still have some pain in my leg. I am wondering If a third opinion is needed. How do I know which is the right direction now that I have two different suggestions. I think One month would be a long time to find out.
Since the swelling has gone down I am confused so right now I am waiting for the results of the blood tests.
i"m sorry to hear about your diagnosis. It's very good of you to post here to help others while you're going through such a challenging time.
I wonder how long it will take for them to be able to distinguish what type of lymphoma it is.
what happened to you seven years ago when you needed a biopsy then?
did you have lymphoma then too?
I"m also freaked out to learn you are suffering this many years later from one node being removed. Lympydema is painful I' heard.
Jb and i weren't sure if this could happen with just one node being removed.
plus "heretohelp" was able to find some info on it, which is helpful. I wasn't really able to find out for sure whether that could happen.
but you're living proof it can.
I guess there is no way for them to prevent that from happening 100%.
it's risk I guess.
I'll be thinking of you mudrunner.
you can get a 3rd opinion if you feel better about it. alot of people do.
he's doing the blood work like you wanted the first dr to do, which is good. this way they can see your white blood cell count to see if there's an infection going on in your body. lymphoma's can't be detected through just blood work.
alot of people diagnosed with lymphoma's blood work were all normal, other than having an enlarged node or nodes.
so you can't rely on blood work.
If it goes away, the pain that is, but the node is still enlarged, I would definetely go to the first dr who wants to perform a biopsy.
it takes time from beginning to end when you're trying to get a diagnosis.
If you dont want to wait an entire month to go back to that dr, go back to the other dr who wants to do the biopsy.
I hope you get your answer soon rather than later.
please keep us updated. you too mudrunner if you're up to it.
Sorry about the delay in response. I've been a little distracted. Finally got the definitive word on my nHL. Type B, follicular grade 2, stage 2. After a LOT of research and multiple MD consultations I'm scheduled to start R-CVP day after tomorrow. Oh joy.
As to the "node" thing seven years ago. The removal of some number (how many?) of nodes is standard procedure in an open radical prostatectomy. It's part of how they determine if the nasty bugs got out of the barn. Now, whether this removal or just some other flailing around by the surgeon caused my leg lymphodema I cannot say. Neither can anyone else, it appears.
Yes, having a puffed up limb is a significant annoyance on occasions. When it's really acting up it feels like an over stuffed hot dog. Difficult to bend it, which is why I run and bike ride so much. Keeps it "pumped" and generally under control.
I know that reading posts in the various forums can lend a tendency to "freak" when you don't know the particulars of your own situation. I try to follow my own advice...don't guess...find out by getting tested. Knowing the scope of the enemy's camp can tell you how big your army needs to be. I suspected some type of lymphoma back in July but didn't get the final DX until just a while ago. Had to go thru two node biopsies, blood tests, bone biopsy, and two scans but here I am, finally with a DX to work from.
It's my plan to clear off these nHL nodes and get tuned up for the next MudRun at Camp Pendleton in June (if I can get my leg to cooperate once more). Too cool to be in the 65-69 age group finally. Fewer compeditors so I always finish higher every year. Took third last time so perhaps first this?
how are you feeling today? I too didn't get to open my mail till today. days past your reply to me.
I'm sure you're relieved to finally get a difinitive answer to your diagnosis so that you can begin treatment.
I thought with follicular lymphoma that they do a "watch and wait" approach? it's one of the slow growing forms of lymphoma, isn't it?
It's very complicated and I don't know 100%all of the info on this subject.
being it's a class B that probably changes the watch and wait approach, right?
I must say you are a very dedicated and very strong person to continue on in your marathon despite your diagnosis.
you're instinct was correct a year ago that you thought you had a lymphoma. how long were you having problems with your enlarged node?
it started last year and you went thru all those many tests and they still were't able to determine you had lymphoma until just now?
I hope I'm not annoying you with so many questions. you may not have time to be sitting home answering all of them. espeically now that you're started treatment. what exactly is this form of treatment you're on?
is it to strengthen the immune system? or is it a form of chemotherapy?
I understand now the feeling of the stuffed sausage feeling, because I've been waking up lately with my fingers so swollen that it's uncomfortable to bend them or to hold my coffee cup. it takes good hour or two before they go down. I have no idea what's causing my fingers to swell like this. even my left ankle is uncomfortable when i put that foot on the floor to stand up when I rise in the morning out of bed.
I have a dr's apptn with my rheumy dr this coming tues. to find out if my vit. D deficiency has improved by taking D supplements.
I feel like every day there's a new symptom with me.
I don't want to verbally express it to my common law husband in fear I may make him become tired of me and my multiple illnesses.
oh mudrunnner, I'm SURE you'll come in first this year because of your positive out look in life and your stength and determination to continue in this run despite your new diagnosis. You sound very fit in all directions and as long as you keep such an upbeat attitude in spirit, I feel one can accomplish anything! you're been partaking in this race now for a few years?
what is your age? I'm 47 but feel like my body is in the person of a ninety year old. no joking. I want to feel better and feel my life has slipped away from me in the course of the years by my health decling and we didn't know what was wrong.
My muscle wasting really effected my ability to have any physical strength to push myself to excersise.
during the course of your pre diagnosis, was there a time you did not feel well either? or did you not have any B symptoms?
some people with lymphoma feel perfectly fine and some feel horrible.
I will be thinking of you and hope your treatment kills those little buggers.
I want you to win first place this year, but then again, 3rd or 2nd is darn good too. how can one lose if you try it? I'd say one loses, if they DON'T try. right?
I am hoping I hear back from you to find out how you're doing through all this.
I wish you peace and health,
Just got back in the door from first blood test after last Wed's chemo. All within acceptable range ... that's good. I told the nurse it's the 6 miles of running several times a week and a 50 miler with my bike geezer buddies on Monday's that keeps all those little corpustuleses just zzzzzinging around. Not sure if she bought that one.
There's a noticeable change in the node under my arm already. The one in my neck has not changed as far as I can tell. Even better, had no lymphadema issues with having the MD dink around with that one for the biopsy. As I said before, one never knows, do one?
Yes, a significant portion of the medical community supports Watch & Wait for grade 2 follicular. Probably the same bunch that advises Prostate guys to watch that. I didn't buy into it when I made my decision to go after that cancer and I don't buy it for this one either. This is a VERY personal decision that each of us has to make in our own lives and should be based on as much technical knowledge as one can muster. It's been my experience that in the world of medicine, ultimately much of it is based on a SWAG. My SWAG says that in as much as many follicular's eventually turn less than friendly, I'm putting my LIFE on the bet that it's better to wack the little dirtbags early, with the expectation that they'll leave me alone for a long, long time.
What if I'm wrong? Suck it up and keep on slogging.
As for the chemo, it's R-CVP. Less toxic than R-CHOP, and at least so far, not much more difficult than many of the other medical adventures I've been on. Real nasty headache and gut pain for a couple of days and now a sore throat and raspy voice. If I get 16 good days out of the 21 day cycle I'd say that's an acceptable trade off.
On occasion I've been accused (perhaps not always incorrectly) of having a "caviler" attitude toward these serious medical matters. A problem is as big as you think it is, no matter how others see it. How much pain and discomfort is too much? Many times I've asked myself why I inflict the old bones with pain to do the running and riding. The answer is not so complicated. Being as physically fit as your are able to be supports a better quality of life. I try to stand away from most of the bad stuff and look on these physical and medical issues as a personal learning experience which I can then translate to some form of meaningful dialog for helping my friends handle similar diagnosis. Often times that's not an easy thing to do. I often use the "when you're up to your arse in alligators, it's hard to remember your original intent was to drain the swamp" line to get my mind back on the right track.
Age? The week of Dec 18 is a big one for me. Hit 65, married 40 and do second chemo all within a few days. Oh yea, and the HO, HO, HO is right up there too.