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Wait and Watch

Jazmin2
Posts: 18
Joined: Sep 2015

Anybody diagnosed with NLPHL and still docotrs suggest to wait and watch? Biopsy comes positive, CT scan shows more swollen lymph nodes and PET scan results are showing some too. 

 

 

Scharfschutze15
Posts: 12
Joined: Sep 2015

Hi Jazmin,

odd - just posted in your first thread and now found this. This sounds very odd to me. My wife's oncologist has her on a 'watch and wait' routine after NHL. We have monthly bloodwork and then CT/xrays quarterly to monitor some abnormailities, then a PET if something looks changed or concerning. Note that its routine to get many false positives, as it were, where a scan show something odd/wrong that upon closer inspection or repeat scan in 1-3 months proves to be benign. Once you've had cancer, you'll always carry that fear of it coming back in some way, obviously.

However, if you have a positive biopsy with CT and especially PET showing swollen lymph nodes, the watch and wait plan seems very odd. Unless the nodes are only slightly enlarged and unless the 'positive' biopsy is in question, I'd find this hard to accept and would want to find another oncologist. You wouldn't need to repeat those tests. You can get a DVD of all the image scans you've had done and then call the hospital that did your biopsy and insist they transfer original tissue slides from the biopsy to your new oncologist's path department for a second/third opinion. Those records are yours to send to any oncologist you can get to take you as a patient. As I said in the other thread, do everything you can to have a major cancer hospital take your case, not a smaller local hospital or onc.

 

S.

Jazmin2
Posts: 18
Joined: Sep 2015

I find it ODD... But this is coming from John Hopkins, Director of Lymphoma and assistant professor in Hopkins university. (my second opinion this is) Nodes are slightly large and he already said that

"I know you will feel weird and if you insist that you want to get some radiation", than he will go in some more nodes to do biopsy. 

Now a question, so your wife started as "wait and watch" approach? and end up getting Chemo? 

Scharfschutze15
Posts: 12
Joined: Sep 2015

Hi Jazmin,

 

re: my wife, no, the other way around. She presented with swollen lymph nodes in Jan of '14 and we had some problems with diagnosis. Eventually had a formal diagnosis of Peripheral T-Cell Lymphoma NOS by end of March, '14. However, there were problems with the path reports, some tissue matter was lost and the second and third opinions we obtained after much frustration didn't concur with the first in some major ways. Lymphoma? Probably, yes, but the type was questionable. We'd already begun treatment before getting the second and then third opinions and moved doctors/hospitals till we eventually found a place we trust.

So, she completed chemo and was in remission and probably headed for a syngeneic  stem cell transplant but it was decided she was just too weak to go through with it. She then had a bunch of unrelated complications (emergency stomach surgery) that only added to that not being well enough to proceed. So, our oncologist decided in light of all that had gone on, watch and wait would be the right path. We agreed, after some time to think.

I wouldn't take 'watch and wait' at the beginning of all this. It would seem crazy. Again, you didn't note if you'd had a biopsy on one of the swollen nodes which should always be the first step in confirming diagnosis. Without that, you have concerning image scans that need follow-up. To my knowledge and experience, the formal follow-up for that is always biopsy.

 

EDIT: just noted from OP that you do have biopsy positive result. Again, I'd suggest you get the actual biopsy material, all scan images and reports together and have them transferred to the best oncologist you can find at a different hospital, so it's reviewed independently. Note that a week or two's delay here isn't a big deal, beyond being hugely stressful.

 

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