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NERVOUSSSS

FLmama
Posts: 20
Joined: Nov 2020

Hi all. Welcome to the club that no one want to join, right? 

Went to my PCP second week of September with swollen glands (neck, axillary, groin) as well as fatigue and mild, intermittant lower back pain. She ordered some bloodwork, urine, and had me return two weeks later. Normocytic anemia, but otherwise normal. Neck and inguinal ultrasounds unremarkable, and then later, abdominal sono unremarkable as well. By the time I returned to her, the glands in my neck were larger and hard, new ones on my collarbone and since then more under the arms. 

Was sent to a hematologist/oncologist. Asked questions about night sweats (yes, drenching sweats, but only once or twice) and feeling full after small meals or nausea after eating (yes and yes, but intermittantly.) So here's the part you have already put together-- she tells me she's pretty sure I have lymphoma... 

My question is-- she ordered CT scans and PET scan (between their busy schedule and needing prior auth from insurance, here I am over a week later and still, no scans done. CT scans should be Tuesday though.) Shouldn't a biopsy be done first? I asked and she said that they will want to biopsy the one that lights up the most on the PET. Does ths sound right? I trust her but I am a nervous wreck... I find new lumps all the time now- I feel as though I am riddled with this thing and we are just wasting time. Awful feeling. 

Was just curious if anyon else followed this path?

Thanks so much

po18guy's picture
po18guy
Posts: 1192
Joined: Nov 2011

Here is a saying that helps us to stay sane: "You do not have cancer until a pathology report says you have cancer."

As well, it does not matter what doctor thinks, or what the radiologist thinks, or what the surgeon thinks or what the nurse thinks or even what you think. All that matters is a pathology report on a sample of tissue taken in a biopsy. There are so many non-cancerous causes of what you are experiencing that only pathology can make the call. Your symptoms are consistent with many types of lymphoma, but also with innumerable other conditions such as 80+ autoimmune diseases, sarcoidosis, and even some virulent strains of the common cold. As well, there are millions of different unknown viruses that can cause the immune system symptoms that you are experiencing. 

"IF" a scan lights up one node, please insist on having the entire node out, in what is called an excisional biopsy. So-called needle biopsies provide many false negative results, as they simply do not take enough tissue. Plus lymph nodes (you have hundreds and hundreds of them) have a unique internal structure, or architecture, which must be examined. Cancer will eliminate that architecture, but this cannot be known unless an entire node is removed. It is not a big deal - walk in and walk out. But, everything takes time, from scheduling scans to the completion of pathology. And the Corona virus has only slowed things down even more.

If the delay is getting to you, remember that even if it is lymphoma, it is rarely an emergency. The stage is not nearly as relevant as in other types of cancer. In my journey, I have been stage IV twice, have had about 100 tumors, plus lymphoma in my spleen, bone marrow and small intestine. The second time, I had two different aggressive T-Cell Lymphomas (plus a 3rd marrow cancer) simultaneously and that was now over five years ago. No sign of it since. If you can, please try to relax. And, no Googling! Before diagnosis it is a terrible thing to do. After diagnosis, it is good to learn about what is ailing you.  

FLmama
Posts: 20
Joined: Nov 2020

Yes, of course you're right... I need to remember that. It's true that it could be something else. Ironically, I'm a nurse, LOL. I even requested HIV test because I thought, though not probable, it could be that. (Thankfully negative.) 

I appreciate hearing that it's rarely an emergency... I guess I had envisioned frenzied phone calls and urgent treatment started. You've  helped me to take a deep breath and I think I might sleep just a littl easier tonight.

My oncologist did mention that she doesn't believe in needle aspirations either. I actually look forward to getting it out and really finding out what's going on in there!  

It sounds like you have been though so much yourself... it is very generous of you to be here makig others feel good. Very much appreciated-- thanks so very much

GGc0ok
Posts: 42
Joined: Oct 2020

FLmama Hi

I posted my story under Biopsy next week. I'm GG I too am going through my own health issues. The whole month of Oct I was sick. My GP put me on a strong antibiotic for an infection.  I had swollen glands, extremely tired, no fever but one morning a slight fever. No night sweats, no appetite. I've gotten appetite back but get that full felling as well. 
I've had the contrast scan.  Had my oncologist appointment which he ordered my biopsy. I've had chest X-ray, numerous blood work. I had my biopsy last Monday Oct 26. Tomorrow I have an appointment with my oncologist.  I either have lymphoma or something else. I'm not scared I just want whatever this is to start a treatment plan ASAP.  
Im sending my positive thoughts and prayers your way.  Waiting is the worst.  But I'm a warrior, will fight this with all I have. 
GG 

FLmama
Posts: 20
Joined: Nov 2020

I had read your post, and related to your story immediately... I pray that you are okay- I hope you get your {{negative}} results at your appointment. As was pointed out to me above, there are lots of conditions it could be other than lymphoma; I am trying to remind myself of that as well. 

I hope for the same- an immediate treatment plan if that's what needed, or answers to find out what this is, if not NHL.

I believe you are a warrior-- maybe we can be warriors together XO

GGc0ok
Posts: 42
Joined: Oct 2020

Hi FLmama

I thought I'd check this forum before I call it a day.  So glad to see you read my story. 
We can absolutely be warriors together. We can and will do this!!

Goodnight Hugs 

GG

ShadyGuy
Posts: 684
Joined: Jan 2017

You have many of the same symptoms I had before diagnosis with stage 4 nhl. Main difference was my only palpable node was a golfball-sized one on my right shoulder blade. It came up and got large in just a few days. My doctor poo pooed it and recommended shoulder surgery. I went to an oncologist who said his trained hands could feel other small ones. However my abdominal cavity was a mass of lymphoma. Several non-cancer doctors missed all my obvious signs of cancer, not just once but for almost 2 years. But if, according to some logic, I did not have cancer because these lesser Gods did not say I had it. By the same reasoning one could say stay away from doctors and you won't have cancer. My point is be skeptical, learn about the conditions and view your doctors as advisors not know all beings. They can and often are wrong. It is documented that medical errors kill almost four times as many people each year as Lymphoma..

Po and I disagree on diagnosis. I feel you have what you have regardless of what a Doctor may say. I had several tell me they did not think I had anything wrong. They just kept prescribing antibiotics. I know we are taught that Doctors are God-like all knowing people but I say be skeptical and take responsibility for your own health. Hospital and medical errors are the third leading cause of death in the USA. Question authority and above all get second, even third opinions, especially on CT scans. CT scan interpretations are as much an art form as a science. I submitted some of mine to different radiologists for review. The difference in analysis was stunning. Some things are obvious on a CT scan but the more subtle things are hard to interpret. I had a doctor compare it to seeing faces and object in the summer clouds. While one may see a a cloud as a dog, another may see the same cloud as a sailing ship etc. It is not an exact science.

On the cancer I think that lymphoma is probably the least detrimental of cancers which we can get. Its very treatable and though the treatments can be stressful,they usually work well. You will be fine. 

FLmama
Posts: 20
Joined: Nov 2020

I am a huge fan of my GP (Nurse Practitioner actually)-- she is very thorough and never made me feel foolish for what i said when I saw her in early September: "Hi. I think I have lymphoma..."

As a nurse I fully intend to be as proactive as, but as I know from prior exoerience, being a patient makes everything topsy turvy... My sister will be face-timing during my follow-up appointment with pen in hand to write down what I would otherwise surely forget.

Even though you and Po may vary with some aspects, I have found both of you to give me hope-- which I desperately need. Thanks so very much 

ShadyGuy
Posts: 684
Joined: Jan 2017

According to a Johns Hopkins study available online:

2019 deaths in USA from known medical errors - 251,275. If you include suspicious deaths ~440,000.

Deaths from NHL - about 32,000

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3662
Joined: May 2012

FL,

Your fears are reasonable and almost universal.  Managing them is usually possible in most individuals, but there is no absolute calm for people in our circumstances.

It is protocol to do CT/PET BEFORE a biopsy, so your doctors are correct in this, based on what I have always read as a layperson.  Keep in mind that no one here is writing as a medical professional, with ANY form of certification, and we cannot ever claim to know better than the oncologist who is treating you.

I first presented with almost certain lymphoma in 2009.  The CT that by chance found it was not even looking for lymphoma, but I had massive involvement across both axillary, both lungs, subclavical, compressing the heart, esophagus, and superior vena cava, and throughout the pelvic region.   The surgeon said it was either extreme lymphoma, or I was about to die of AIDS (which I did not have, and was at no risk for).   

Despite my condition, and despite me trying to HURRY all of the necessary tests and proceedures along, it was three months before my first infusion began.   As Po noted, lymphoma is virtually never an emergency, but then a body begins to wonder: "What if I am that 1 in 1,000 who IS an emergency ?"   Your team is working this with due diligence and speed, from the particulars you  have shared.

Oncologist like to play poker with their patients, and usually refrain from diagnosing something except with proof, and only a biopsy is proof.   Your case sounds extremely likely to in fact be lymphoma.  I am neither a killjoy nor a lilly-picker:  you will learn that many doctors are somewhat brutal in their frankness, others less so.  I personally prefer the brutal approach:  give me the results straight up, and immediately.      In 2014, when I went in for prostate cancr biopsy results, the doctor came in and started hemming and hawing and speaking of "Active Survellance":  I cut her off, and said give me the  pathology report, which she did.  I ensured that she scheduled me with a surgon and a radiation oncologist, because I had determined my options prior to the results.  Then, not intentionally, I yawned in her face and left.   If I want drama, I watch movies.   Two weeks ago I had a tennis ball sized node cut from my r axillary, and SHOCKINGLY to me, it was benign, an extremely rare condition called PTGC, which mostly only occures in patients with indolent HL.   It reminded me of the fear....very much so.

Wishing you the best, and please share what you learn, since we learn more here than we share.  If what you have is lymphoma, then regardless of stage, it very likely is controllable or in many cases even curable, with 'cure' meaning complete remission (CR) or no evicence of disease (N.E.D.).

max

FLmama
Posts: 20
Joined: Nov 2020

Thank you so much for sharing your story - I feel mine will be similar. But I am SO ecouraged by your words at the same time. I am relieved that my diagnostic path seems to be on target.

CT scans tomorrow morning. I guess all  my years of discount shopping have paid off- I saved $400 by making a few calls but it's made me realize that being sick is also going to be very costly. Sigh.

Anyway thank you SO much for the information and support. I will certainly be back to update...

Samiam1114
Posts: 19
Joined: Nov 2020

Hi FLMama,

 

Cost is a big concern of mine as well. I had Ultrasound, CT Scan done & a FNA biopsy which showed  "Highly Suspicious for Hodgkin's Lymphoma" I noticed the lump above my collar bone about 5 weeks ago. It's still the same size, I am feeling okay. We are in this together!!! I go to see the Hematology Oncologist on November 19th. Wish you the best & yes, keep us updated! It's nice to talk to people that know exactly what we are going through.

FLmama
Posts: 20
Joined: Nov 2020

First, I'm sorry you are going through all of this... very stressful. 

I am so grateful to have found this page-- so many people have walked this path and are so generous with their time and support. What a relief to kmow you are not alone! And you are not-- I'm right here!

I was told today for the second time since all of this started that I am an enigma (great.) I saw my oncologist yesterday and she reviewed the CT scans-- nodules everywhere but my chest-- measuring up to 1.2cm. Apparently over 1cm may indicate malignancy. So she wasn't necessarily impressed-- said we could do a PET scan but she wasn't sure it's necessary (so I reminded her of the $1000 copay for that and if I need it okay but if I don't, LET'S SKIP IT!) Same for biopsy, she said they're all small enough she didn't think it's warranted just yet. SO for now we are "actively monitoring"-- she wants to see me every 3 months unless something changes. She said she cannot rule it out becaus it may be indolent lymphoma and we need to wait and see. Not crazy about that-- I don't get the big sigh of relief of it being ruled out, but I can't be proactive and treat it. Mixed emotions.

Today I saw a GI doc because I am 51 and need a colonoscopy, and honeslty I have always had GI issues. I of course told her about this recent lymphoma concern but also mentioned that I have chronic fatigue and have had chronic anemia for my entire adult life. Had a fascinating conversation-- she said this may all be Celiac disease! Anemia and SWOLLEN NODES can all be related... I am a nurse and had NO idea-- never heaard of this before. Hard to believe that no one ever suggested this simple blood work for me before. I cannot wait to get it done! (Sidebar-- there is a link between celiac and lymphoma. sigh. No hiding from this!) But she did say "I really hope this is all realted to celiac. I can fix that."  I am keeping my fingers crossed.

I will update and hope that you will too. How's your support system? Family?  I'm divorced and my sister is in NY but she was there on facetime with me; felt good to not be alone for the oncologist appt. I'l be thinking of you - looking forward to staying in touch :)

ShadyGuy
Posts: 684
Joined: Jan 2017

I would agree (lay opinion)  with your Doc that indolent lymphoma is hardly ever an emergency and patience is called for. Often FNHL can be treated with Rituxan monotherapy, at least initially, which is not a difficult regime. Lookin good!

FLmama
Posts: 20
Joined: Nov 2020

Even if just a layman's opinion- I'll take it. I've taken comfort in all of the knowledge shared here. That's good news about Rituxan- I have intentionally limited my searches until I have an official diagnosis; don't need to dive into the rabbit hole that is the internet! Thanks for posting :)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3662
Joined: May 2012

To open link, HIGHLIGHT, then Right click, then click on "Go to........"

 

https://pubmed.ncbi.nlm.nih.gov/15266094/

 

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