CSN Login
Members Online: 0

You are here

Waiting

Mnmaven's picture
Mnmaven
Posts: 6
Joined: Mar 2015

I want to start off by saying my husband has not yet been officially diagnosed with lymphoma. That being said, two and a half weeks ago an oncologist from Mayo clinic told us, "I'm 90% positive you have lymphoma." This was following a PET scan which revealed high (SUV 9.8) metabolic activity in the right axilla, retro perneium, and nasopharynx. He also showed two areas on his spleen accompanied by mild splenomegaly. His largest node is 2.3cm right now. Reading the PET scan report was sobering . There were several lymph nodes identified as "reactive" Including his adenoids, tonsils, and a few in his abdomen. When asked what type of lymphoma was suspected the Dr told us he suspected mantle cell. All I really remember from that point on is hearing "stage 3-4" "aggressive" "can live for several years" "double-dose chemo and stem cell transplant" .

My husband also has known lymphoid hyperplasia diffuse throughout his colon and a long history (20 years) of stomach pain. We were pursuing his stomach pain that was accompanied by enlarged mesentaric lymph nodes. No other abnormalities were found via CT scans. Ironically his mesentaric lymph nodes show no PET activity. He does not have night sweats, hasn't lost weight, his blood work is normal, no true b symptoms. He does itch terribly, but has excema, so we attribute the itching to that. He didn't even notice the lymph node swelling under arm. He does need at least 8-9 hours a sleep a night, or he feels fatigued, but to me that seems normal. In the ten years we have been together he has been sick three times! He has a terribly reactive immune system. For years doctors have been telling my husband not to worry, blowing off his concerns. He felt something was wrong, maybe a gut feeling? We are both 29. 

The scan was followed by a core needle biopsy, which was acellular. We were all set to have his axilla node removed when we discoved his insurance didnt cover Mayo clinic. I was able to get him into an oncologist the next day that was covered by his insurance. The new oncologist told us he felt my husband had an indolent cancer, potentially from the age of nine, if he had cancer at all. He ordered a bone marrow biopsy, but did not want to biopsy the axilla due to the depth of the node. The bone marrow biopsy came back negative, and the new oncologist said, "see you in 6 months." !!!!!

We of course are not satisfied with that and have an appointment on Monday to push a biopsy to confirm what is truly going on. This has been a true roller coaster ride, which I'm certain won't stop. Over the past weeks I've researched mantle cell cancer (illead, if you read this, I've read almost all your postings and have researched Dr. Kahl, and Ibrutinib extensively due to your mention-such hope for mantle cell!) and indolent cancer in general. I am so hopeful for the future of lymphoma treatments, it seems the new therapies have truly brought us into a new era in which late stage indolent lymphoma could be cured. I've also spent time researching all the rare things the hyper metabolic activity could be detecting (sarcoidosis, benign lymphoid hyperplasia, castlemans, reactive lymphoid hyperplasia) although I'm highly suspicious of lymphoma myself. 

I've lurked on this discussion board since the PET scan reading, going back to discussions from 2002. I have to say, many times the positivity and support shown has helped lift me when it felt our world was crashing down on us. 

 I'm nervous our new oncologist isn't taking this seriously. Is it typical to not want to biopsy? It seems like everyone knows what type of lymphoma they are dealing with. With indolent lymphoma, how often did you go to the oncologist? 

 

 

Mnmaven's picture
Mnmaven
Posts: 6
Joined: Mar 2015

Also, I feel confident that just by looking at a PET scan there is no way to tell what type of lymphoma someone has, correct? Even nodal spots don't seem to be indicative of specific cancers it seems.... So mantle cell could have been a shot in the dark because I pressed him for an answer....

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

MnMaven,

You are correct, the info in a PET scan cannot with certainty indicate what strain of lymphoma a patient has. It might give a reasonable suggestion to a highly experienced oncologist, however, since some strains "spread" in differing, characteristic patterns.

Only a biopsy can give a defenitive diagnosis that specifies lymphoma strain.

The doctor's comment about "since the age of nine" sounds bizarre and completely arbitrary to me; it is hard to imagine what that might be based on.

I hope your ultimate answers are better than expected,

max

 

Mnmaven's picture
Mnmaven
Posts: 6
Joined: Mar 2015

I think he is referring to the date my husbands stomach pain started to occur.  I suppose we really can't know when this all began. I think we are lucky this (whatever it is) has been found before my husband shows any symptoms. 

I am starting to think we may not get a true diagnoses for some time, as we have now had several surgeons tell us the nodes are all in difficult and dangerous areas to biopsy (including two Mayo clinic surgeons). At this point we have been told the risk of biopsy is greater than the PET scan results. Mayo did have one surgeon willing to do some exploratory surgery to hopefully find an abnormal node to biopsy. 

My husband requires a medical clearance for his job, so certainly they will force the issue within the year. In the meantime I may need to spend more time praying for both his health, and my patience! 

Mnmaven's picture
Mnmaven
Posts: 6
Joined: Mar 2015

It seems to be the only thing we do. Our oncologist cancelled our appointment. We made the decision to leave his care and seek out someone else. So now we wait for three more weeks. I've never had the virtue of patience.

I've found the less time I spend on the Internet, the better my piece of mind. 

Mnmaven's picture
Mnmaven
Posts: 6
Joined: Mar 2015

I wanted tp update this thread, as this site was of such comfort to me while I had no answers (I say that like we have them now

Subscribe to Comments for "Waiting"