NHL Pre-Treatment Limbo

Jessica_C

Hi all - I received my NHL diagnosis two weeks ago and as a 30-something with four young kids, I went into a panic. What's been the most unexpected for me has been the time it seems to be taking to get all the info needed to get a treatment plan, and the difference of opinions from different doctors. Did anyone else experience this? I have met with many doctors, and they agree the pathology report clearly shows NHL (high-grade, b-cell) but they need more info to create a treatment plan. It's been one-step forward, two-steps back as we go. They need more tissue sample to determine subtype; this doctor thinks it's odd my blood work is typical; another Dr. thinks that is not unexpected...one Dr. even alluded to maybe it's a false positive (the other doctors said no way.) What I'm getting at - is did anyone else have a bumpy road to treatment. I'm feeling that the limbo is almost more overwhelming than focusing on the diagnosis. I'm just hoping for firm answers so I can focus on treatment. Almost feels like false hope...that said, I'm thankful to have found this forum!

- Jessica

Max Former Hodgkins Stage 3

Yes

Jessica,

What you are going through is, sadly, pretty common.

Why are you seeing "many" doctors ? I would initially go to an oncologist, and then get a second opinoion.  Sometimes, in complex cases, a doctor will then suggest a specialist, but otherwise, one or two docs is sufficient.   If you are dealing with a large cancer center, then the handing off back and forth is fairly common.  I would demand that ONE (1) doctor be designated as your lead, and that all of this head scratching go through him (or her).  This lead position can later be changed if doing so is best.

• False positives are virtually unheard of; false negatives are much, much more common.  I would ignore the "false positive" thought, especially if CT also shows enlarged nodes.  An excise (surgically cut out) biopsy is much more accurate than an aspirated (needle) biopsy. Typing the strain of the disease is CRITICAL to correct treatment, however.  If they need more sample, it should have been preserved if it was an excised node.  If it was aspirated, let them aspirate some more.
• Normal Labs.  This is very common, even in advanced, aggressive disease.  I had advanced, widespread disease, and virtually all of my labs never were far from normal, except WBC and RBC during treatment, and LDH (a specialty test that measures cell death).  The doc who said the normal labs are common is who I would agree with.

Have you been STAGED ? This is done mostly via CT.  Have you had a bone marrow biopsy yet ?  This is universal in staging lymphoma.

It is common for patients to hear "cancer" and panic.  But many writers here took YEARS to get diagnoses. My next door neighbor took three years to get a definitive diagnosis.  Unless an organ is being damaged, lymphoma treatments beginning is almost NEVER an emergency situation. Lymphoma is very different from most organ cancers.

Your doctors sound like they are working your file in a timely manner. But YOU must manage and direct your own treatment. Being offered a variety of approaches is pretty common.  In nnearly all cases, there is no need to rush into beginning treatment (which for NHL is chemotherapy 99% of the time).

For aggressive NHL, it will probably be a five-drug cocktail known as "R-CHOP," "EPOCH," or some other.

Tell them SOME DOCTOR has to be the coordinator. Do not get lost in a shuffle. But do not panic either, there is no need for that.  I have added a link to chemotherapy drugs below; it is probably the best reference around for chemo and side-effects.

max

http://chemocare.com/

 

 

Jessica_C

Max Former Hodgkins Stage 3 said:

Yes

Jessica,

What you are going through is, sadly, pretty common.

Why are you seeing "many" doctors ? I would initially go to an oncologist, and then get a second opinoion.  Sometimes, in complex cases, a doctor will then suggest a specialist, but otherwise, one or two docs is sufficient.   If you are dealing with a large cancer center, then the handing off back and forth is fairly common.  I would demand that ONE (1) doctor be designated as your lead, and that all of this head scratching go through him (or her).  This lead position can later be changed if doing so is best.

• False positives are virtually unheard of; false negatives are much, much more common.  I would ignore the "false positive" thought, especially if CT also shows enlarged nodes.  An excise (surgically cut out) biopsy is much more accurate than an aspirated (needle) biopsy. Typing the strain of the disease is CRITICAL to correct treatment, however.  If they need more sample, it should have been preserved if it was an excised node.  If it was aspirated, let them aspirate some more.
• Normal Labs.  This is very common, even in advanced, aggressive disease.  I had advanced, widespread disease, and virtually all of my labs never were far from normal, except WBC and RBC during treatment, and LDH (a specialty test that measures cell death).  The doc who said the normal labs are common is who I would agree with.

Have you been STAGED ? This is done mostly via CT.  Have you had a bone marrow biopsy yet ?  This is universal in staging lymphoma.

It is common for patients to hear "cancer" and panic.  But many writers here took YEARS to get diagnoses. My next door neighbor took three years to get a definitive diagnosis.  Unless an organ is being damaged, lymphoma treatments beginning is almost NEVER an emergency situation. Lymphoma is very different from most organ cancers.

Your doctors sound like they are working your file in a timely manner. But YOU must manage and direct your own treatment. Being offered a variety of approaches is pretty common.  In nnearly all cases, there is no need to rush into beginning treatment (which for NHL is chemotherapy 99% of the time).

For aggressive NHL, it will probably be a five-drug cocktail known as "R-CHOP," "EPOCH," or some other.

Tell them SOME DOCTOR has to be the coordinator. Do not get lost in a shuffle. But do not panic either, there is no need for that.  I have added a link to chemotherapy drugs below; it is probably the best reference around for chemo and side-effects.

max

http://chemocare.com/

 

 

Max, this was so helpful and

Max, this was so helpful and reassuring, thank you!! It was found by mistake when a biopsy was taken from my GI (looking for the cause of some stomach issues / ulcer).  Since then I was sent to a Cancer specialist, who then referred me to the top cancer hospital when I live. Blood work and PET scan looked good - so they think it's an early detection, but they mentioned it was high-grade/large cells. Seems the issue now is there wasn't enough tissue taken from the biopsy to do the tests needed for the subtype (since they didn't know at the time they were dealing with cancer). So going back for a colonoscopy/biopsy tomorrow.

I've heard the success rates are high - and I'm aware the odds I have would be so welcomed by so many dealing with cancer, so I'm trying to stay positive. The waiting is rough though. I'd rather fight, than wait 

Max Former Hodgkins Stage 3

Feedback

 Your feedback does "muddy the water" a little, Jessica, although that is probably neither good nor bad.  If your PET was clear, than it must be early disease indeed.  It also means that there is no rush in starting you on treatments, if indeed your issue is NHL. 

90% or more of all lymphomas are derived from "B-cells."  "Diffuse Large B Cell" (DLBCL)  is indeed one of the more aggressive forms (there are over 40 strains of NHL), and it is commonly discovered in the G.I. track.   A colonoscopy is painless and an outpatient routine, no biggie there.

As I said, flase positives are rare. Most likely you have an incipient stage case of DLBCL (based on what your docs said, the biopsy, and where the discovery was made), for which the prognosis is very, very good.

Please keep us updated.  

Unknown

Large B Cell

Max, as usual, is correct. And DLBCL is curable!  Its more aggressive than other sub-types which means its fast growing and responds better to cancer drugs which mostly target fast growing cells. Its very important to take the time to get it accurately typed and staged at the molecular level. That will ensure the most effective drugs are selected. Once fully typed, go to a different physician AND lab for confirmation. Most Oncologists are very good but hey, no one is perfect. Get any questions out of the way up front so there will be no second guessing and/or regrets about the treatment path chosen. I have stage IV follicular lymphoma, an incurable and chronic disease. I have 3 close friends with DLBCL, one of which was 28 at diagnosis. All 3 are now cancer free, while mine just won't give up its ghost. I am resigned to having it for life. You on the other hand, have odds in your favor. the road will not necessarily be smooth or easy, but get good doctors, trust in them and never look back. You can tell the story to your grandchildren!

lindary

FNHL

Like GKH I too have folliular non-Hodgkins lymphoma. By the time it was found (Dec 2014) I had enlarged node in the abdomen and pluerisy of the right lung because the lymph system couldn't draining the fluid. Because of that things moved kind of quick.  In about 6 weeks I had my first chemo. 

If the Dr recommends starting chemo I strongly recommend getting a port put in. You will have a lot of blood tests. Before I got my port I tried to make sure we alternated arms for blood draws when it was not being done in the oncology area. At some point the left arm gave out. 

I hope you are lucky and go on the watch & wait program.