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Neighbor with no Diagnosis

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1048
Joined: May 2012

I have a new next door neighbor, male, about my age or a bit younger (50 or so). I was speaking with him yesterday, and somehow got on the subject of health. I mentioned my stage 3 HL, and he then stated that he had been told he had stage 3 lymphoma, but was later told he is benign.  He has been going through a diagnostic ordeal for about a year and a half.

His history is numerous enlarged nodes in the neck, jaw, and armpit regions. He has had four biopsys at differing times. One, he said, was the size of a baseball.  Three were negative for any malignancy, and one, which was shipped to Johns Hopkins, had "only dead cells, and could not be tested."  Somehow, the tissue had died or decayed to the point that it could not be tested.  Before moving next door, he was about 40 miles away, in a rural area, but was driving to the same large, well-regarded cancer center that I have always used.  His doctor's office was (is) next door to mine in the same building.  Small world !   He says they are bringing him in for six-month blood tests. I told him if I were him I would be pushy and demanding for an anaylysis.

He says he does not currently feel any nodes. He has had episodes of extreme night sweats and fatigue in the last year.  He has NEVER received any form of treatment.

As a layperson with the information I have learned over the last five years, it sound to me like he has some form of lymphoma - I do not see how he could not.  (Soaking night sweats, xtreme fatigue,  node the size of a baseball --  no tests have come back positive for any form of infection.  How is that not lymphoma ?)  If I were his doc, I would give him a PET scan to detect activity, but they may not feel it is justified yet.

I know many of you have had very difficult times with pathology and diagnosis, and so would appreciate any thoughts regarding this neighbor's specifics.  I guess I was lucky in a way: my CT found lots of involvement, a biopsy came back clearly indicating one specific strain, and we went from there.

max

girliefighter's picture
girliefighter
Posts: 207
Joined: Mar 2013

Max,

Sorry to hear about your neighbor's ordeal, perhaps you can persuade him to go to your doctor for a second opinion or join this forum. I know a year ago I had a lump in my armpit and went to a surgeon, he prescribed some sort of antibiotic and it went away. Hindsight I know it was lymphoma, it has a VERY bad habit of going up and coming down in the nodes. The lymphoma and it's trickery is a master of disguise, I think that sometimes it is the timing that helped us get to our diagnosis'. After I had my son in 2005, I had a lump on my breast area that went away it also could have been an early sign of lymphoma. I was told that I have had it for years before it was ever caught. Wish him luck from all of us.

xxxooo

Carie

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi Max,

 I don't know...his situation is a bit tricky. Sounds like he's been doing all of the right things, but maybe it's time now to go to another facility and get a second opinion. New eyes on his case might be whats needed. Like you, mine was found immediately upon scan results and first biopsy of groin node. I sure hope he figures out a new plan...soon. It always makes me nervous when I hear someone is in limbo with their diagnosis. Best wishes and prayers for your neighbor...let us know if something new developes. Take care...Sue 

(FNHL-2-3a-6/10-age 62)

Rocquie's picture
Rocquie
Posts: 487
Joined: Mar 2013

It sounds like your neighbor has his "head in the sand" a bit? Perhaps he is afraid of an actual diagnosis. I appreciate your compassion for him. Other than suggesting another opinion, which you have done, maybe you could just speak of how thankful you feel that your diagnosis was clear-cut and what a relief it is to get treatment under way and a direction to follow. Maybe you could talk about what you went through in treatment and how doable it really is? 

He may be your new neighbor for a reason and maybe the best thing you can do for now is keep being his friend.

I know what you mean about new found knowledge. . .

Rocquie

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1048
Joined: May 2012

I will update if new is shared from him. I stressed my readiness to speak further. At present I am essentially still a stranger to him, of course. Ideally, he will never have occasion  to mention his scarry episode agaain.

 

 

NANCYL1
Posts: 228
Joined: Jun 2012

Awkward situation, not knowing the neighbor.  If I found myself in limbo, I would seek another opinion and from an Oncologist.    Maybe you will get another chance to speak to him.

 

Nancy

rescue911chick's picture
rescue911chick
Posts: 55
Joined: Mar 2013

While not the same exact situation (I did have a PET that showed hypermetabolic activity in multiple places), it sounds like he's stuck in limbo like me. You were among the first back in March to tell me to get another opinion, it took 3 months but I'm finally going for it. I keep thinking back to when my dad had colon cancer in '94. He told me he was going to see another doctor for a 3rd opinion and told me a "joke" of sorts. He said "What do you call the guy who graduates last in his class from medical school? Doctor."  We all owe it to ourselves to get that second opinion, since a diploma hanging on the wall in their office doesn't say "barely passed" lol!

I like what one of the others said, you wound up with him as a neighbor for a reason!!  I think you said the topic may not come up again but I think it might, by him. He's probably pretty worried & now that he knows of someone who has been through it, you're in a good position to be there for him. Talking about your experience might give him the encouragement he needs to press for more answers. Good luck, I will be praying!!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1048
Joined: May 2012

Rescue,

I have had a few local friends (who do not post here) tell me much the same thing: He moved here for a reason, and we somehow got on the subject of lymphoma for a resaon as well. Thanks as always for your prayers and feedback.

max

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