CSN Login
Members Online: 2

You are here

I need help

Justiny35's picture
Justiny35
Posts: 22
Joined: Sep 2017

I'm so analytical it's almost disgusting. I get anxiety from all the information I've learned and I'm having a hard time dealing with this being I'm 35 I have 2 kids and 1 on the way and I'm getting married in 4 weeks. I was diagnosed with DLBCL. I just got out of the doctors office and the doctor pretty much put everything on the oncologist as far as answering very specific questions I had. I feel after talking to the doctor I fell further into the rabbit hole about my cancer. The doctor performed an orchiectomy on sept 15 he pulled out my whole testicle and spermatic cord the whole thing. The specimen was looked at by 2 lady pathologist that specializes in cervical cancer. If you suspected lymphoma wouldn't you want a hematopathologist to make that diagnosis. I feel there is a chance they could of misdiagnosed what I have. I have no symptoms of lymphoma...my bones don't hurt no abnormal swelling anywhere no b symptoms I'm breathing just fine chest doesn't hurt no fatigue...only symptom I have maybe is itching and I think that's from the hydrocodone. Can anyone tell me if this has every happened before or know of a misdiagnoses. I'd imagine it would be pretty hard to misdiagnose lymphoma especially with a large specimen right in front of them such as a testicle. I was taking levoflaxin for a UTI I had which I stopped taking 2 days before orchiectomy was performed. My CT scan of my abdomen showed that my kidneys, spleen, liver basically everything below my diaphragm was normal except for one tiny slightly enlarged lymph node right above the Aorta. It's at 13 cm at the time of the CT scan which is also when I had an UTI. From what I understand DLBCL very rarely starts in an extranodal organ and usually starts in the lymph node. If I have no symptoms and no evidence that the cancer spread from the testicle or to the testicle how can they diagnose me with DLBCL? Im probably wrong but we are talking about a rare disease at my age it's highly unlikely for the lymphoma to start in an organ. Is it possible for a small 13 cm size lymph node to be the starting point than spread to my testicle. By the way my testicle grew 3 times bigger than my left one and it really wasn't painful it was more like it was uncomfortable. I did experience some sharp pains that would happen sporadically but nothing crazy painful. Any encouragement or advice is much appreciated.

Rocquie's picture
Rocquie
Posts: 828
Joined: Mar 2013

Hi Justin, I'm glad you have joined our group and I hope you find the support you need here. I am also analytical and tend to overthink things.

I'll make a couple points for you: There are over 50 types of Non Hodgkin Lymphoma and they are not necessarily easy to diagnose. Because you had "lady" pathologists doesn't mean they are incorrect. However, I have learned that pathology is subjective. If you have any doubts at all (and it certainly sounds like you do) ask for a second pathology opinion. Ask to have your slides sent to a major cancer hospital or teaching hospital. My own diagnosis was changed after I did this. 

I hope you will see your hematology oncologist soon to get your questions answered and to have a care plan put in place. Believe it or not, you will settle into a routine once you begin treatment.

Also consider that a lymphome diagnosis is not the sole reason for your anxiety. Having 2 children and another on the way and an imminent wedding sounds pretty stressful to me! Many of us here, have taken Ativan to help with anxiety; it is also excellent for nausea. 

I don't know if you are religious or spiritual, but praying helps. Finding other ways to relax also help--yoga, meditation, support groups, music, comedy. I hope your fiance is being supportive. 

Hugs,

Rocquie

 

Justiny35's picture
Justiny35
Posts: 22
Joined: Sep 2017

Hey Rocquie

Your right alot of stress is coming from getting this wedding setup. Honestly I'm thankful for that because it keeps my mine busy. I have too much to worry about to be focusing on this but when the dust settles I have cancer now to worry about and as you know and I'm sure everybody else on here knows how stressful that is. I didn't mean anything by it when I said lady pathologist and I guess I should have worded it differently but everything else below I mentioned as far as symptoms is mainly what I'm basing my theory of misdiagnosis on. It seems like DLBCL can have a differential diagnosis. They are multiple things that can act as DLBCL but is not DLBCL. So my question is has anyone experienced this? 

You did mention you got a second opinion and your diagnosis changed. Can I ask what you were originally diagnosed with and what your actual diagnoses was?

 

Thanks for your help and understanding

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

Sorry my experience is not similar. However I suggest you have them send for another pathologists to evaluate. Elaine Jaffe at National Cancer Institute ended up reading mine. Google her and you will find out she is highly regarded. She is very busy so it may take 2-3 weeks to get it back. No local Pathologist would diagnose mine and she did. Mine was very rare and I  was diagnosed with 2 Types of very rare Lymphoma. Having a diagnosis that is correct is imperative to getting the right chemo or course of treatment. I went to 3 doctors even after I had diagnosis before I started treatments. Of course this was mainly due to the rarity of my Lymphoma and the complication of having 2 types at the same time.

Anxiety is expected. It is traumatic to be told you have cancer of any kind. Having children that depend on you heightens the anxiety. However, please know that though we all worry at times and we often worry about things that never come to pass. One step at a time. 

This forum will be a great source of help. Wishing you the best.

Sandy Ray 

dana-mihaela's picture
dana-mihaela
Posts: 39
Joined: Sep 2016

As all the others specified it is important to get the diagnostic correct. You were diagnosed with DLBCL lymphoma which is different from let's say MZL  marginal zone lymphoma (which is what I have). You read all your information about DLBCL but you should know for example that MZL does not start in lymphnodes. It is extranodal and it forms tumors in organs. I did not have any lymph node involved and my tumor was in the pelvic area. I did not have any symptoms what so ever of lymphoma, the way I was diagnosed was that the tumor was pressing on the spinal cord at L5-S1 giving pain and nerve issue like sciatica. So you can see why it is very important the diagnostic.

Good luck to you. 

Dana

Subscribe to Comments for "I need help"