On reactive lymph nodes and delayed diagnosis
 

Hi everyone,

In my disease understanding/acceptance quest, I've talked to quite a few doctors about my delayed diagnosis. I've heard from a few now that told me that it was unfortunate that my diagnosis was delayed but in their opinion, there was nothing wrong in the wait-and-see approach the doctors took with me when I first showed up with a swollen lymph node under my arm in July 2008.

The lymph node was ultrasounded, and the results showed a reactive, benign-looking, 2.5 cm lymph node. I was breastfeeding my 3rd for comfort at night at that time, but weaned him the weekend after I found my node in the hopes of doing a mammogram. The doctors told me to do a mammogram when I was 40 (I was 37 at the time) and come back in 3 months to check the lymph node.

Three months later, in October 2008, another ultrasound still showed a benign-looking, reactive lymph node, but this time, it was 2.1 cm. They again told me to come back in 3 months.

When I did so in January 2009, it was clear that my right breast was swollen, bigger and much denser than the left, with skin edema and nipple changes. I was diagnosed in February 2009.

Maybe I had the "explosive" tumor kind (there was an article recently in the NYT about it posted on another thread), but maybe the tumor was there for a while and no one could identify it.

In any case, my question is: if a young woman shows up in a doctor office with a clearly palpable lymph node under the arm, shouldn't the node be biopsied with a fine needle aspiration? And if the node is still there after 3 months, isn't this a stronger probability that the node indicates cancer?

I find it very distressing to know that women (especially young women not yet at the mammography age) may be showing up at doctors' offices with swollen lymph nodes and not getting the proper biopsy until much later. I could feel my right breast being "denser" than the left back in 04/05 when I was nursing my 2nd, and I suspect my tumor showed up around that time. Or maybe not - maybe it did show up in 08, but it still bothers me that doctors (not all, thank God) have been telling me that nothing was wrong with the care I received and the wait-and-see approach.

Any opinions? As someone who strongly believes in breast cancer advocacy, shouldn't we be sending the message out that underarm lymph nodes should be FNA'd immediately? It's such a simple procedure and I don't know why not more is done (I don't believe in the theory that cancer could spread as a result of a needle inserted in the lymph node, but I'm not sure if the verdict is out on that). After all, everything I know about lymph nodes is that they either become swollen due to infection or cancer, with other causes being much less likely. And lymph nodes under the arm drain the fluid from the breasts, so if a lymph node is swollen under the arm and there are no signs of an infection, then why don't doctors immediately raise the red flag of a cancer diagnosis? What other causes could be affecting the underarm lymph nodes to be swollen?

Not sure what I'm missing, but it just seems logical to me. No infection? Then cancer becomes much more likely.

I'd appreciate all your comments!!!

Thanks!

Marcia

Re: On reactive lymph nodes and delayed diagnosis
 

Hi Marcia,

I'm inclined to agree with you and don't know why people presenting this way are told to wait and see, sheer torture in my opinion!!

I was reading the latest news regarding not removing nodes in very early cases and feel uncomfortable about that too, my surgeon and all my Dr's were totally conviced my nodes were clear, but three were positive!! I was'nt surprised as had experienced an ache there for some weeks which the Dr's dismissed, it seems sometimes maybe the Dr's need to listen to the patient more which be nothing more than a hunch, but a hunch thats often right.
I think any woman in your situation should demand a FNA if at all possible!

Re: On reactive lymph nodes and delayed diagnosis
 

Where is that explosive tumor article? Ceesun

Re: On reactive lymph nodes and delayed diagnosis
 

what benign conditions cause swelling in a underarm node?? Reactive but benign? Was it painful?? An inflammed node would most likely be tender.

Sometimes I think docs are patronizing and think we will become hysterical if they suggest a biopsy. If they are not sure, shouldn't they suggest one just to rule out cancer? How many men walk around with swollen lymph nodes in their groin and are told to come back in three months???

No mammogram when you initially presented????? Grrrrrr.......... not wanting to stir the pot, but that doesn't sound right either.

Sorry, have heard bad news from two friends (both under diagnosed and under treated.......grrrrr)

Looked into the reactive lymph nodes.....

"If the lymph node enlargement is unexplained, it may need to undergo a period of observation for 3 to 4 weeks possibly with the addition of empirical antibiotics.
If it persists after a period of observation then the patient should seek medical attention which may require further investigations using ultrasonography and fine needle aspiration cytology or an excisional biopsy."

Re: On reactive lymph nodes and delayed diagnosis
 

Re: On reactive lymph nodes and delayed diagnosis
 

Re: On reactive lymph nodes and delayed diagnosis
 

Hi Marcia
I read your post your post and it brought my own diagnosis back big style especially the struggle you had.
I also found a large swollen lymph gland in my axilla. Went to see my Doctor who fobbed me off and told me I was neurotic. I returned many times over the next 18 months only to be told that I was making a fuss about nothing!! The only examination I had was a physical breast examination!
Now I think I must have been MAD not to insist on further investigations but I was too trusting.
Eventually I presented with a swollen breast with nipple changes. Initially I was diagnosed with IBC but later another oncologist doubted this and felt it was locally advanced bc.So the jury is still out!
I spent ages 'beating myself up' about being so trusting as I'm now fighting for my life but at that time I was under such stress that maybe I wanted to believe that it was nothing!

Ellie

Second (and third) opinions
 

I am in full agreement with DLaxague about this. I too happen to not be located near a cancer center. For other reasons I received a delayed diagnosis. My PCPs were asleep at the wheel -- too many substituting physicians, and a hospital that did a poor job of checking out the background and experience of a "breast cancer specialist" surgeon... and, a patient who was not persistent enough about the need to question doctors and the system.

The mistake we make is in not listening to our own sense of the problem enough to seek out second and even third opinions, including one from a known center that specializes in detection.

Delayed diagnosis is hard to live with mentally no matter what the outcome, and much harder still for those with a cancer that has spread.

AlaskaAngel

Re: On reactive lymph nodes and delayed diagnosis
 

Just an FYI here.... THIRTY years ago I had a freely movable enlarged lymph node in neck that remained there for 3 years....had several thyroid scans since I was at high risk which were all negative....docs said no cancer.....finally, my ob-gyn said you know, I want you to biopsy that even though others say its fine. When I did, it was shown that I had a very slow growing thyroid cancer, about 3mm in size, that never showed as anything on the thyroid, but spread to the cervical node. I say all enlarged bumps and lumps should be suspect until proven otherwise. Ceesun

Re: On reactive lymph nodes and delayed diagnosis
 

My Mother had felt 'something' in her underarm and went to the doctor in 1998. They checked and found Non-Hodgkins Lymphoma. I think age is a big factor. For those of us (my life-long brain tumor could have been found at least 5 years earlier)who don't fall into the 'Norm', it's always a struggle 2nd guessing ourselves and the 'incompetent' doctors who had missed/delayed the diagnosis.

Re: On reactive lymph nodes and delayed diagnosis
 

I found this thread by looking up benign looking lymph nodes on the web. I have been being followed every 6 months with a right breast ultrasound since August due to an abnormal mammogram. They have classified it as a birads 3. I went to my Drs on Monday because I have had for some time now some tenderness under my right arm. Tuesday I had an ultrasound and got the results today that there are 2 benign looking lymph nodes and I am suppose to follow up with another ultrasound in six months on my lymph nodes now too. By reading this post I am getting the impression that this is not the course of treatment I want to take and I should push for a biopsy?

Re: On reactive lymph nodes and delayed diagnosis
 

Hi,

Found a link with detailed information regarding Bi-Rads. Looks to me your doctor is following the guidelines:

http://www.radiologyassistant.nl/en/4349108442109

"A negative diagnostic examination is one that is negative, with a benign or probably benign finding (BI-RADS 1, 2 or 3).
In BI-RADS 3 the radiologist prefers to establish the stability of a lesion by short term follow-up.
In the evaluation of your BI-RADS 3 lesions the malignancy rate should be < 2%.

A positive diagnostic examination is one that requires a tissue diagnosis (BI-RADS 4 and 5).
In BI-RADS 4 the radiologist has sufficient concern to urge a biopsy (2-95% chance of malignancy).

In BI-RADS 5 the chance of malignancy should be > 95%."

[Final Assessment Categories]

Re: On reactive lymph nodes and delayed diagnosis
 

Thank you for your response.

I was fine with the doctor following the protocol for the birads 3 mammogram untils this week when the found the 2 enlarged "benign looking" lymph nodes under my right arm. I just don't want to under go any unnecessary tests but I don't want them blowing anything off either. If I should voice my concerns then I will.

Re: On reactive lymph nodes and delayed diagnosis
 

Hi there,

I sure hope it's nothing, but I'd request a fine needle aspiration of the lymph nodes for peace of mind. It's just a poke and hurts less than a blood test. If this had been done in my case, I believe I'd have discovered my cancer 6 months prior.

Best of luck to you and keep us updated!

Re: On reactive lymph nodes and delayed diagnosis
 

Thank you for the kind words. I too hope and pray they find nothing.

I do not see my doctor in person again until the March 23 to find out if he plans on following the radiologist suggestions and just getting another sono in six months or pursuing anything further unless he calls me sooner then that I will not know.

Re: On reactive lymph nodes and delayed diagnosis
 

I want to keep you updated.

I saw my doctor on 3/23. I have an appt with a surgeon today to see if they want to pursue anything further. I don't really know what any of these technical terms are on my reports but the cyst in my right breast is a complex lobular cyst and under my right arm the report indicates two solid masses having the architectural appearance of benign lymph nodes. I know benign is a good word, but that is all I am familiar with. They had classified everything as a birads 3 but my doctor is sending me to a surgeon anyway with my reports to see what they think.

Here is hoping it goes good today. :)

Re: On reactive lymph nodes and delayed diagnosis
 

Thanks for the update and good luck to you! The lymph nodes are most likely benign and reactive, meaning they are just reacting to the cyst. But to know for sure and ease your mind, I'd ask for a fine needle aspiration of them - a 5 min procedure.

Let us know how it all turns out.

Re: On reactive lymph nodes and delayed diagnosis
 

What was thought to be reactive lymph nodes above my collarbone, when I was going through tissue expander fills, turned out to be metastatic disease....I am so glad i fought for the biopsy, everyone else just blew it off....that was 8 years ago. The peace of mind of knowing what you are dealing with is priceless!

Re: On reactive lymph nodes and delayed diagnosis
 

Sheila, Debbie L, Bejuce, Ceesun and Jackie... I agree wholeheartedly. I still hear from friends who's GYNs, etc. tell them that "watchful waiting" is the recommendation, and it irks me to no end. One friend had been on watchful waiting with mammos and nodes for over a year when I convinced her to go elsewhere for second opinion. She was immediately dxed with triple neg breast cancer... terrifying.

Unreg, please please please push for the "better safe than sorry" path, and get a biopsy from a breast cancer specific surgeon.

Re: On reactive lymph nodes and delayed diagnosis
 

One reason I think they do that ('watchful waiting') is because of the misconception that things can be 'over-treated' and that they want to avoid causing 'unnecessary worries' to the patients. My surgeon had told me that 'it doesn't make any difference' when my recurrence was finally found.

I heard about people losing their life because of misdiagnosis or delayed treatment. I'm not sure I've ever heard of anyone who has 'worried' him/herself to death!

However, being a 'glass half-full', die-hard optimist, I always look at the bright side of things (such as my recurrence was discovered when Herceptin had been approved...) There is a possibility that the doctors are waiting for the 'magic bullet' to be availble for their patients...