Swollen Left Toncil/lymph nodes scared and alone

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RE: Swollen Left Toncil/lymph nodes scared and alone

by Bjkug on Sun Aug 13, 2017 06:22 PM

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Take it one day at a time. Attitude is everything.I am a 19 year survivor of throat cancer. There is support out there for you. Get a second opinion to ease your mind. Best Wishes,BJK

RE: Swollen Left Toncil/lymph nodes scared and alone

by buddylife on Wed Aug 16, 2017 10:04 PM

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Well I got a call from my ENT today 8/16/2017 regarding the punch biopsy (not fine needle) taken last thur and it isnt good.

The pathologist thinks I have Type B Lymphoma. Pathologist hasn’t determined the actual type of Type B Lymphoma, but I should have those results tomorrow8/17/2017.

 From what I understand this is more of a blood cancer that can affect lymph nodes because they filter the blood.

 Im beyond devastated right now. I don’t even know how to be from moment to moment.

 I researched on line and found some reports of false positive lymphoma B due to auto immune disorders that have cell activity that mimic lymphoma such as Epstein Bar Virus (EBV) or more plainly known as mono.

 I asked the ENT if there is any way I do not have Lymphoma and he said likely not ? Wouldn’t he at least consider the possibility of it being mono? I did my research after I spoke to him so the missdiagnosis questions will have to wait until tommorrow.

 I don’t want to be dramatic here, but my head is basically exploding right now. I know many of you are cancer survivors who endured treatments of great severity and words cant describe the amount of respect I have for each and every one of you. I just don’t think I have it in me to endure this diagnosis, let alone treatment. 

RE: Swollen Left Toncil/lymph nodes scared and alone

by Martywilder on Wed Aug 16, 2017 10:47 PM

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Hi Oh, wow, so sorry ... I'm sure you are devastated. But relax and give yourself time to process the news. This is a very good place for insight but beware of everything you read online. Trust your doctor about the diagnosis. Read. Research. Breathe. My husband had surgery of larynx yesterday-- they had to remove it and give him a new airway. It's hard to even fathom what modern medicine can do. Go to the best cancer hospital in your region. If you live near one, great. Be thankful as you will need to go thru a lot of medical crap and the closer it is, the better. Make your mind up now that you can do this. One step at a time. I'm an old lady and I've seen a lot of life. You are way stronger than you would ever believe. You can get through this. Keep us up to date. People are caring on here but sometimes they get "over" their cancer and on w their life. Just one little obstacle in this journey called life.

RE: Swollen Left Toncil/lymph nodes scared and alone

by Bjkug on Wed Aug 16, 2017 10:49 PM

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You have to have it in you, what alternative do you have? You would be surprised what you can do if you put your mind to it. You have to take it one day at a time. If you are not happy with your doctor,get a second opinion. Use this forum as your sounding board. Let us know,good luck tomorrow.Bjk

RE: Swollen Left Toncil/lymph nodes scared and alone

by buddylife on Thu Aug 17, 2017 12:30 AM

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Had anyone heard of or know of anyone being mis-diagnosed for lymphoma?

Here is the piece I found on it http://theoncologist.alphamedpress.org/content/9/4/406.full

RE: Swollen Left Toncil/lymph nodes scared and alone

by Arman on Thu Aug 17, 2017 01:33 AM

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On Aug 16, 2017 10:04 PM buddylife wrote:

Well I got a call from my ENT today 8/16/2017 regarding the punch biopsy (not fine needle) taken last thur and it isnt good.

The pathologist thinks I have Type B Lymphoma. Pathologist hasn’t determined the actual type of Type B Lymphoma, but I should have those results tomorrow8/17/2017.

 From what I understand this is more of a blood cancer that can affect lymph nodes because they filter the blood.

 Im beyond devastated right now. I don’t even know how to be from moment to moment.

 I researched on line and found some reports of false positive lymphoma B due to auto immune disorders that have cell activity that mimic lymphoma such as Epstein Bar Virus (EBV) or more plainly known as mono.

 I asked the ENT if there is any way I do not have Lymphoma and he said likely not ? Wouldn’t he at least consider the possibility of it being mono? I did my research after I spoke to him so the missdiagnosis questions will have to wait until tommorrow.

 I don’t want to be dramatic here, but my head is basically exploding right now. I know many of you are cancer survivors who endured treatments of great severity and words cant describe the amount of respect I have for each and every one of you. I just don’t think I have it in me to endure this diagnosis, let alone treatment. 

SO sorry about the bad news. We all have been there and understand what you are going through..

There is a section for Lymphoma on cancer compass and you may get better inoformation posting there than in head and neck cancer section.

Please keep us posted with your situation.

Arman

RE: Swollen Left Toncil/lymph nodes scared and alone

by Tuffgirl on Fri Aug 18, 2017 02:49 AM

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Please realize it is going to take time to process this. I found out a year ago June that I have leukemia. AML is one of the worst. I cried for three months straight. Then I got into survival mode and last November had a bone marrow transplant and have been in remission since last August. My sister was my donor. Keep in mind that there are many many lymphoma survivors. I have met them at Moffitt Cancer Center where I go quite frequently these days. It's not a quick fix but you definitely can survive this. Please update and I am so sorry. Holly aka tuffgirl

RE: Swollen Left Toncil/lymph nodes scared and alone

by buddylife on Sat Aug 19, 2017 04:43 PM

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Thanks all who have responded and who had bravely fought thru treatment. I have posted to the lymphoma board with absolutly no responce? 

I have now been diagnosed with lymphoma with sub type being either mantle or large cell b. It is still unclear what the subtype is. A fish test is being done to determine.

I reached out and shared my diagnosis with 2 of my closest freinds who basically reacted very nonchalently, one laughed then turned the conversation to be about them, and the other listened for all of a minute before letting me know they were on their way to home depot. 

Part of my fear in all of this is being alone and apparently having the worst friends of all time. I have no family. I have my dog and thats about it.

I have an oncologic app this tue and right now and every minute since I found out, I am having mini melt downs. Im completely not present, my dog knows something is wrong because daddy is basically in outter space. Im trying to work a very stressful job this weekend and my heart is in non of it.

I need support and I have no idea where to even begin. Any advise would be helpful.

I continue to write here because it crickets over on the lymphome thread...

RE: Swollen Left Toncil/lymph nodes scared and alone

by louisb323 on Sat Aug 19, 2017 11:10 PM

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RE: Swollen Left Toncil/lymph nodes scared and alone

by radiationtonsil on Sun Aug 20, 2017 02:44 AM

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Hey Buddy Life,

I have many "friends" who stopped talking to me when i got cancer.   I figure they cannot handle the thought of death.

Also, death makes us all look at our daily activities.

A lot of what we call "values" are BS IMHO.  I really have little guilt or shame anymore.  LIFE IS TOO SHORT.  

Do not hold yourself back with"normal" mores.

Take some chances ... chase somebody  ... kiss somebody .. wear yourself out to exhaustion ... then sleep in the middle of the day.  That is what I do.

Greg in Chicago

 

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