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Update on DH: finally we're getting somewhere

KathyC

Well-Known Member
#1
Went to Iowa City today; it was a long day to say the least but I think we may actually get some answers this time. Saw a lymphoma specialist today, a female dr who spent approx 2 hrs with us. She of course did not have time to go thru the vast amount of medical records we took with us but she had looked at the inital report sent ahead of our appoint from our local oncologist. After listening to our situation she did a quick neurological exam & I could tell she was extremely concerned with the weakness in Mike's lower extremities. She said that in her opinion, his spine should have been looked into in much greater depth a long time ago. She said when you get a "non-diagnosis" from a tiny biopsy & you can see that things don't look good that sometimes you have to go in & really take a look which means possible surgery on the spine to really get in & get a very large sample. She left to look at the MRI of the spine from Nov 3rd & came back & said she is not an expert on MRIs but something is going on here. She got us an appoint this coming Tues morning (she tried to get us in this afternoon but couldn't) with an orthopedic surgeon who specializes in cancer of the spine. If he agrees with her, it looks like we will probably have a surgical biopsy of the spine after the holidays. She says it has to be determined NOW if this is cancer & if not cancer, we have to determine what disease is in the spine. We see her again on New Yr's Eve! The spot that they told us was not going to ever go away but then they told us in Sept was gone is NOT gone; it is very small but it is not gone. She wants another PET SCAN done within the next month but said the spine has precedent over everything else for the time being. When we do get the PET done if there is absolutely NO uptake of sugar to the node then she says we will not worry about it (the Sept PET did show a very tiny node with a very small uptake of sugar) but if the PET shows even a tiny uptake of sugar then the spot will need to be watched closely. I finally feel like we might actually get to the bottom of this after all of this time & she made it very clear that no matter what other problems come up, she is going to keep her eye on the lymphoma & again said she does not believe in accepting "non-diagnostic" biopsies so I don't think we are going to be sent home to wait anymore for months to pass & then repeating the same kind of biopsy. Before the visit today I was feeling negative about this trip--just another dr & wait & see what develops attitude but not this time. I hope the dr we see Tues will be as aggressive at getting to the bottom of this spinal problem as this dr appears to be. Thanks for your support. More updates will follow.
 

Corky

Well-Known Member
#4
That is good news and I am glad that you feel better with it. You and Mike continue to be in my prayers. (((HUGS)))
 

JANPEP

Well-Known Member
Community Sponsor
#5
Glad to hear someone is taking the time to dig deeper until they get to the bottom of this.
Prayers contimue from here.
 

maw

Wordsmith
#7
Kathy good to hear you finally have someone aggressive to say no diagnosis is unacceptable. Know every day my prayers are with you.
 

nieciez

Well-Known Member
Community Sponsor
#8
Glad to hear you have a Dr who is really going to get down to business on this. We will keep Mike in our throughts and prayers. Glad you enjoyed your time out shopping/dinner after the Dr visit too!
 

ewheelock

Well-Known Member
#10
Finding a doctor that will act is sometimes very hard. I am glad that you seem to have gotten your dh to a dr. that will really help you.
 

debowah

Well-Known Member
#11
It is about time that someone is taking a more aggressive approach. Prayers continue that an answer will be found soon. Merry Christmas!!
 

mrsrocster

Well-Known Member
#12
Oh Kathy, this sounds like you've found a great doctor who has obviously seen that you've been through heck and back and will have none of that anymore! We are all keeping up the positive thoughts and prayers!
 

JacquieP

Well-Known Member
#15
Thank heavens, I think you've finally found the right doctor! There will always be issues
with small "not really diagnostic" biopsies, so our doctors always push for more tissue. It may be another procedure for the patient, but it's better than guessing about what's going on. Please keep us posted!