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confused

Asil
Posts: 2
Joined: Jan 2018

Hello there!

 

I had a quik question for anyone that has been diagnosed. My 10 year old son 2 months ago got pnemonia from a classmate at school. About 3 weeks later I knew I had it , went to the hopital they took an X-ray then they told me they needed to take A ct scan. Later the doctor came in and told I did have pnemonia but that my lymph nodes were really swollen and actually said it looks like Lymphoma and I need to have a fallow up . They also said my D-dimer test was high. 

 Has anyone else been diagnosed this way? I find it strange that a doctor would actually say "lymphoma" without knowing. E.R doctors typically downplay symptoms, atleast at this hospital. Couldnt my L nodes just be swollen from phnemonia ? I will make a fallow up eventually, because I have been having crappy symptoms way before the pnemonia , right sided stomach movement /pain, really bad rib pain, reallly reallly bad shoulder , neck and collar bone pain. But I have had these symptoms for over a year. I have acid refelx so figured these symptoms are just my acid reflux getting worse. 

 Anywho, I was just wondering if anyone has been in a simular situation. Kind of scary .

 

Thank you!

 

po18guy
Posts: 994
Joined: Nov 2011

You have only been diagnosed with pneumonia. With a concurrent infection, I have no idea why a doctor would drop the C word. Which nodes, and how many? If they are in the throat/airway/lung vicinity, the pneumonia is a perfect explantion for their reacting. I would be far more concerned about the D-Dimer level - if they explained that to you. A thrombosis, depending on its location and behavior, can halt your life instantly.

Asil
Posts: 2
Joined: Jan 2018

I agree. I was really caught off gaurd by the whole thing. They said the d-dimer test was high so thats why they did the CT SCAN to make sure I didnt have a blood clot in my lungs. That's when the CT scan showed enlarged Mediastinal lymph nodes. The doctor didnt tell me how many or any specifics . Just go get checked out because it look like Lymphoma. I was so out of it and just wanted to go home, and they seemed like they wanted to get me out of there.               I was really suprised that they didnt run more tests if they thought that, or make sure I didnt have blood clot somehwhere else? I am still pretty confsued as to why they would say Lymphoma if they didnt highly highly suspect it , and if they did I would think they would run more tests.  

philr828
Posts: 17
Joined: Nov 2017

My diagnosis probably has no similarity as yours but after a biopsy, a bone marrow biopsy, a ct scan, an mri scan and a pet scan you can basically find out the type of cancer you MAY have and the stage. good luck in your pneumonia and I hope that is all it is

 

po18guy
Posts: 994
Joined: Nov 2011

Pick a different hospital! Or, at least a doctor with a filter. Some things we think but don't say. If only those who vowed to 'do no harm' would remember that. From a grainy picture, he zeroes in on cancer. Good that things are not always what they seem. He might have seen a similar image in a lymphoma patient who went on to develop pneumonia, but this is only a confirmed case of pneumonia. Let's see, no physician here, but the mediastinum is right there next to those lungs that have pneumonia. Mediastinal lymph nodes react to infection, carrying infection-fighting lymphocytes to the area, and dead virus cells away from it. I see no rocket science there. What, did this doctor get his medical degree by watching the DVD series "House"?

Just watch for additional or worsening symptoms. If it is any consolation, lymphoma can be worse to worry about than to actually have. But, that's just me.

yesyes2
Posts: 584
Joined: Jul 2009

Hello Asil,  Yes it is very scary.  I'm sort of wondering why youhavn't gone to your doctor to have things checked out.  And to see if your lungs have cleared up if nothing else.  Let me share my story with you.  I was having an ultra sound to check on my kidneys when I was told by a radiologist  to get myself to an Oncologist as I had a lot of swollen lymphnodes, and one possibility was lymphoma.  The report went to my Nephrologist who called me the next morning, said looks like Lymphoma, go see your Oncologist ASAP.  Went to the Oncologist who said a biopsy was needed as could be an infection but most likely was Lymphoma.  I said lets wait and see what happens in the next 3 weeks and redo the ultra sound.  Three weeks later my nodes tripled in size.  In fairness to the Radiologist I did corner him and insist he tell me what was going on inside my own body.  

Please let us know what you find out.  Hoping for the very best.

Leslie

po18guy
Posts: 994
Joined: Nov 2011

Expecting cancer since my 20s, I found a tumor behind my left ear at 55. There are some things that you just know. 60% of dad's side, including dad, fell to cancer. But, try to convince anyone what it was! My GP had just retired and the noob replacement was clueless. I got antibiotics and some blood work (useles for lymphoma). Then, many nore visible nodes, spiking fevers, weight loss, fatigue and absolutely drenching night sweats. Went back and diagnosed myself with doc as wotness. "Do I have mono?" More blood tests. I had mononucleosis for the second time!

"Then, my immune systen has failed!" I said. I got anxiety meds, which I still have. Left and never wet back. Went to ENT, a straight up guy. He dropped the L word and said we have to get one of those nodes out - you could se them from 50 feet away. His schedule was filled. DW called and found an independent surgeon who could take one out that week. He said, "Nothing against the older guys (doctors), but as they reach retirement age, they are not at the top of their game. If you ever hear a doctor say the word 'wait', run for your life!" He referred me to a local oncologist whom he trusted.

Went there. He just left on 2 weeks vacation, but could see his partner. Fine....Ick! 70 years old! Did marrow biopsy and pathologist saw no cancer. He wanted to "wait" We ran. DW had already made an appointment at Fred Hutchinson/SCCA and we got an initial consult with the sharpest doctor that I have ever seen. He ha much more sophsisticated testing dones and confirmed Peripheral T-Cell Lymphoma, Not Otherwise specified. Stage IV, The pathologist stopped counting at 50 tumors ('innumerable" the report said) and lymphoma in my bone marrow. This began a 10 uear odyssey that has not stopped yet.

Said doctor had just then specialized in the rare T-Cell Lymphomas. A match made in heaven, especially so since I had no diagnosis on my arrival. But, the diagnostic process took two full months.  

Evarista
Posts: 261
Joined: May 2017

Your ER doctor would not have been the one drawing the conclusion of possible lymphoma.  S/He would have been communicating the impressions from the RADIOLOGIST who read and reported the results of your CT scan.  That report may have said something like this (I am quoting from my own 1st CT scan):  "IMPRESSION: 1. Multiple enlarged pelvic and retroperitoneal lymph nodes are most worrisome for lymphoma versus metastatic disease." or similar language that included the word "lymphoma". If the Radiologist noted suspected lymphoma in his/her report, the ER doctor would have been seriously remiss or possibly guilty of medical malpractice if s/he did not pass that information on to the patient (= you). 

I do agree with YesYes that you should follow up on this with a reliable oncologist (preferably a Hem-Onc specialist) ASAP.  If you can do that within the same medical system, the oncologist can review the CT scan and radiology notes directly.  If you must be seen somewhere else, take a print out of the radiology report with you.  If you do not have that report, get it from the hospital where you had the scan done.  Good luck to you.

 

po18guy
Posts: 994
Joined: Nov 2011

What exactly are you disagreeing with?

lindary's picture
lindary
Posts: 650
Joined: Mar 2015

Years ago my one niece (lived in another state) went to the ER because of severe constipation. The ER DR told her she had stage 4 colon cancer and should go home and get her personal stuff in order. Her dad flew out there that night and the next day got her to a cancer center. They confirmed the diagnosis but said it was treatable. She did survive a little over a year which was significantly longer than what the Dr in the ER said. 

Evarista
Posts: 261
Joined: May 2017

This comment:  "I have no idea why a doctor would drop the C word." 

If the radiologist suspected lymphoma, that must be shared with the patient.  Bedside manner may have been less than desirable, but not sharing results of a CT scan would be unethical, IMO.

victoriabrantley's picture
victoriabrantley
Posts: 1
Joined: Feb 2018

My husband was diagnosed with lymphoma with b cells, after almost 3 weeks. The docotor said he would send his records to an oncology doctor, and we havent heard anything. i mean really

how long does it take to send records, meanwhile this growth on his neck keeps growing.  No one really seeems to care.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3293
Joined: May 2012

Victoria,

A few things.  First, you need to get a copy of of your husband's biopsy and keep it. Call and demand it today. You are fully entitled to it, and already paid for it.  Second, the doctor ordering the biopsy to begin with has a fiducary obligation to meet with you and go over the biopsy results face-to-face, even though he is not himself an oncologist.  I cannot believe he did not.

Depending on your insurance and whatever network you are in, you and your husband should be the onces scheduling to see the oncologist of your choice, after you have studied the biopsy results.   I would call your current doctor and ask to whom the results were sent, and then call that oncologist's office directly.

Medical records are mostly sent electronically today; pieces of paper are seldom mailed any more.  Thus, the new doctor should have had the records the day after your doc sent them.  But when he might have time to review them is anyone's guess.  Between my biopsy results being explained to me by a surgeon and my first-ever meeting with an oncologist was about 3 weeks.  The wait between first seeing disease on a CT and my first infusion was about two months.  But two months' waiting for Lymphoma treatments is almost never a problem and virtually never worsens outcomes,

max

katz2402
Posts: 14
Joined: Dec 2013

Dear all...not sure ifor anyone actually remembers me. I was a member of this board 3 and half years ago when my brother was diagnosed with colon cancer. Kevin sadly passed away 6 months later. I am here again 3 and half years later feeling heavily weighed down as face the similar challenge with my 68 yrs old mom. Mom was diagnosed in March 2017 with low grade lymphoma with multiple masses in the groin. She has attempted chemo but failed hopelessly at it due to constant infection and low platelets. The oncologist changed trearmost to radiation and thereafter stopped the treatment telling her that the masses have shrunk but not cured. I am extremely confused at this gesture as I am aware if cancer is untreated it will triplicate bexcuse she has an aggressive cancer. Is there a chance that her condition is worsening as I watch her become strengthless, always tired, feeling weak and her inability to walk unaided. 

 

Can somebody please help me understand what could be happening inside her body...

My blessings to you all.

Love and light

po18guy
Posts: 994
Joined: Nov 2011

UK, Canada, Australia, New Zealand or?

Anaid2160
Posts: 9
Joined: Apr 2018

I guess I was extremely lucky. I went to ER with high temperatures that i had 4 nights. I also had stomach pains. They did CT scan and admitted me. They told me they suspected lymphoma. The doctor recommended a biopsy. 2 days after biopsy I had diagnosi, had port implanted and my 1st round of chemo.

I hope you find answers soon.

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