The Agonizing Wait

cosmoandco

Hello,

In February I noticed a lymph node in my neck was much larger than it should be by palpation. I was given an ultrasound. It showed an enlarged lymph node in the level 2a area of my neck. I have a history of Lymphoid Hyperplasia that resulted in a tonsillectomy 8 years ago. This ultrasound showed the measurements to be 2.4 x 1.0 x 1.2 cm. I figured it was a reaction to something at that point but my PCP wanted to run blood tests. I had a CRP of 20 and an ESR of 72. Since those were elevated, this became the start of my journey. Over the next six months I have endured a lot of scans, tests and symptoms of a clear immune response (elevated markers) but an unclear reason. My CRP remained elevated going down to 16 at the lowest, while my ESR was reading at 72, 86, 120, and 84 over these six months. I was referred to an ENT who gave me yet another set of antibiotics and steroids. After those were gone I was sent for another ultrasound of my neck in the same area. The same lymph node that was measured before now measures 2.1 x 1.6 x 1.0 cm, another one has popped up next to it that measures 1.8 x 1.0 x 1.2 cm. I have constant shoulder/neck pain and also have been diagnosed with dysphagia in the midst of this. I am 30 years old. These lymph nodes and general inflammatory markers have been causing me such a burden because the hunt for a diagnosis has become harder than I thought. I have seen a rheumatologist who has given me tests, the AVISE test was overall negative for everything besides my TC4D biomarker which was strongly positive. As well as an indeterminate anti DSDNA I am scheduled to see a new rheumatologist in a few days for another opinion, as well as another ultrasound to check my neck again before my FNA biopsy next week. The reason I am here is because while an autoimmune condition is what my providers have been focusing on, they are now talking about the possibility of malignancy, which I guess has always been a possibility but I have been trying to not think about it. Some of my other symptoms that make them think that is I get hot really easily, the fatigue, rashes and 50lb weight loss since Feb. Has anyone experienced a similar story? Most of my family and friends are tired of me talking about it, so I guess I am mostly looking for support.

Thanks for reading

po18guy

Sorry to hear of your worries. Until a pathology report states that you have a malignancy, you do not have cancer. Last I checked, there were 75-80 identified autoimmune diseases. There are many times that number which have not been identified and can create the exact symptoms you have. Most cases of expanded lymph nodes are simple infection: bacterial, viral or fungal. Antibiotics will not touch viral or fungal infection.

What jumps out at me needs an introduction. At 30 years of age, you are at a point of increased anxiety. Millions in your age bracket experience an increase in anxiety, for a variety of symptoms. Your ultra-detailed description of your symptoms and time line are consistent with a state of worry. The fact that your family and friends - who love you and know you best - are tired of hearing of your concerns, leans even further in the direction of anxiety.

You mention palpating lymph nodes. Why? Prodding and poking them, for whatever reason, can inflame them and cause them to expand in size. If you are a worrier, it only adds fuel to the fire. Our bodies are capable of producing about 150 different symptoms of illness. Anxiety, on its own, can produce 100 of those symptoms - with no actual disease being present! Ask your family if you are an anxious person. They will not lie to you. Ask your doctor the same question.

Anxiety cannot help you, either well or sick. Since you have no set medical diagnosis, consider addressing your anxiety over this situation first. If that is the path you choose, know that the gold standard in anxiety therapy is called Cognitive Behavioral Therapy. It is nearly always drug-free and can be done in person or even by phone or Zoom meeting.

You deserve to live in peace.

cosmoandco

I was figuring a response such as this would come. Support is hard to find when you are waiting for answers. If they didn't think cancer was a possibility then I wouldn't have a biopsy scheduled. I've got my mental health under control with both therapy and medication. Also I am aware of the many other possibilities it could be but anxiety is not one. Also doctors palpate during exams, I dont sit there and prod and poke at my neck. I already know they are there, hence the scans and biopsy.

PBL

Hello cosmoandco,

Getting a definite diagnosis can be - and often is - a very long process, and it is important to not let yourself go down the proverbial rabbit hole while waiting for answers. Easier said than done, I know, but I believe this was po18guy's message.

This being a discussion board for lymphoma patients, we are able to share some of our experience dealing with hematologists, cancer treatments, etc., but we may likely not have any meaningful info for you when your doctors have been working toward an autoimmune diagnosis…

Biopsies are not necessarily done only when cancer is suspected. Doctors generally make a list of possible diagnoses ("differential diagnoses") that could match all the symptoms and test results you have indicated; this approach enables them to pinpoint the actual disease as they move from one test result to the next, ruling out this or that item from the list in the process. Having a differential diagnosis of cancer does not mean you do have cancer. It seems to me that in your case they have been looking at lupus as the most likely culprit.

Regarding the weight loss you mention, while it could of course be due to cancer, it might just as well be the result of anxiety (which often causes some anorexia) or, in your case, dysphagia - which may fit in with lupus.

Whatever the case may be, it seems to me that after six months of testing, it shouldn't be long now before you are handed a complete diagnosis. Biopsy results may take up to two weeks to come back. Try to go on with life as usual during that time. Engaging in enjoyable activities such as sports, creative hobbies, going to the movies or concerts can help keep your mind off something you have no control over.

Do let us know what your diagnosis turns out to be.

Kind regards,

PBL

archangel724

https://csn.cancer.org/discussion/comment/1724367#Comment_1724367

Hi cosmoandco.
Po18guy is VERY knowledgeable & has been like a few others here, my only source of support. PBL also. I wish I could be more medically supportive but I’m a newbie to this wonderful world of cancer. U talk about blood levels & CRP, ESR, bio markers & sadly my head spins! I’ve been told time n again I’M young for what brought me here..diagnosed at 49 with Stage 3, Grade 2, NH follicular lymphoma, thru Christmas tree PETS over 1 year & then definitively in February after major abdominal surgery (my 24th surgery since I was 18) & I’k what u mean about diagnosis taking forever b/c with surgical history like that, only 1 surgical oncologist was willing to open me up yet again, remove large mesenteric lymph nodes & boy did he find tons of extra cr** in there, but not r/t cancer so won’t bore u. It did take over a year to diagnose. I had anxiety but not overly intense b/c with my family history(maternal side) I knew at some point, it would come knocking.
I’m going to agree 100% with po18guy that until/unless diagnosis comes bk firm, without a doubt, it’s not cancer. You’ve DEFINITELY been thru hell with testing & that’s enough to make anyone ridiculously nervous. But I gotta respectfully disagree with u, that when your Drs talk about biopsies, it’s not to diagnose u WITH cancer for sure…it’s also to rule it OUT! After ALL my symptoms: constant sweats, not just nighttime 😂, crazy fatigue, WISH I had weight loss(could NOT no matter what 🤬), the off the charts abdominal pain..which I’m a pro with(yup the 23 surgeries), 4 light me up PETS, I couldn’t wait for biopsies! My team said could be immunodisease also..biopsy me ANYWHERE just give me an answer, whatever it may be. But I’ve always thought of & approached my 2-3 biopsies as : let’s see what we can RULE OUT here. Please don’t get set on cancer.
At this point, I think po18guy is a freaking medical genius b/c there’s not much he doesn’t know & the sound advice he gives. He obviously knows a TON about immune diseases & even tho I’m so sorry, I don't & only know about some cancers/treatments, I’d be better at emotional support rn, b/c I had my few caring fellow warriors here & maybe 2 family members. I was dropped like a red hot demonic potato by my only sibling when I was going thru testing & when diagnosis came. I tried to b understanding, we lost our mom from angiosarcoma a 1 in a million second cancer directly from radiation therapy after very aggressive HER2+ breast cancer she just met her 5 year remission on, in 2021, our Dad 2019 not cancer related. So she probably distanced herself from too much recent death & she figured that’s where I was headed too..WAY to SUPPORT 😆. My husband couldn’t cope so was a body during treatments but resentful at my lack of cooking, cleaning, etc & so I was totally alone emotionally.”STOP reading n researching! It’ll b fine & if u don’t believe that, it WILL kill u!” I only got water bottles & the occasional cold cloth. So I understand no emotional support.
I’m hoping that I made a little sense, I’m sorry if I was absolutely no help whatsoever! Just know, biopsies don’t =cancer, PLEASE keep us all updated on what/when u have a diagnosis! I’m a very good listener & have been told THAT n my dry, sarcastic sense of humor does cheer people up! I’ll b here if/when u need some of that!
All the Best!

cosmoandco

Thanks for the responses everyone. I am hoping that it's not cancer my grandpa had lymphoma and I never got to meet him. I came here mostly to hear stories from people who struggled with a diagnosis and lacked support during that time. Yes, this makes me nervous and anxious. The anxiety is not overwhelming as it has been with other things. I know it's not cancer unless the biopsy says it is. I know now that maybe I should have found a prediagnosis discussion and was not trying to be insensitive. I am just trying to find people who maybe can relate to the long agonizing wait of dealing with life altering symptoms and no diagnosis. Whether it is an autoimmune condition, malignancy, or something else, it is a slow and lonely process. I appreciate everyone who takes the time to respond to me.

PBL

https://csn.cancer.org/discussion/comment/1724374#Comment_1724374

cosmoandco,

There is no doubt in my mind that you will find many - if not most - people on this forum and others who can relate to that utterly lonely feeling while waiting months for answers. That is myself included. Your visit here was a bit premature, and that is nobody's fault - neither yours nor ours. It is quite normal to want to accelerate the process and kill the suspense… All of those who answered your post today have tried, in their own way, to point out how unhelpful it can be to try and claim control over such a situation, when there is only one way to keep functioning - and that is (once your case is in the appropriate hands) to address the anxiety, either by seeking professional help or (and) looking for diversions to bide the time. We are, after all, known as "patients" for a reason.

Whatever it is, I am sure we all hope for the mildest possible diagnosis for you. Do keep us posted.

Kind regards,

PBL

Max Former Hodgkins Stage 3

cosmo,

Waiting is the nature of the beast in seeking medical care. I was diagnosed with massively widespread, Stage IIIB HL in 2009. It was three months from my diagnosis till my first infusion, and everyone said everything was "expedited." Everything on your thread can be summarized in one sentence: Until you have a pathology report from a biopsy, no one has a clue as to what is going on. Lymphoma nodes virtually never hurt, but that, too, is just an anecdotal fact, proving nothing.

Besides my initial HL, I went through a long term active surveillance regarding autoimmune problems, then a relapse of HL after 11 years disease free, again as Stage III-B. And also, a case of Stage II prostate cancer in 2014-15.

I have followed many thousands of post here at the Boards. I suspect your biopsy will be negative — my layman's opinion. I certainly hope it is negative, and due diligence is warranted on your part.

max