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Poorly Differentiated Neoplasm

Poorly Differentiated Neoplasm

Posted By
Carlsbad317
4/9/2019 1:17pm
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Replies: 7

2/25/19 I had a biopsy of a fast growing tumor (within 6 weeks it went from feeling something uncomfortable to just shy of the size of a baseball.  Only a wedge was able to be removed due to where it was located under my right armpit.

Prior to the tumor being discovered I had a freckle removed that needed additional attention after the original mohs surgery.  

The biopsy has been sent to a few different labs and poorly differentiaited neoplasm is the result that keeps coming back.  Most recently it was sent to a lab and the markers came back as possibly melanoma or sarcoma.  The doctor stated that the markers often overlap,

I have been waiting for the results and they are being sent out again. Currently I am being treated for Stage 4 melanomia due to the orignal markers/stains.  Ipilimumab/Nivolumab based upon doctors best educated guess.  He feels that the melanoma got into the bloodstream and found a spot to reside in the soft tissue.

The doctor stated that sarcoma can be treated with the same treatment plan, but there is not enough research and that chemo is added.  Waiting for next lab result in about three weeks.

Questions:

Has anyone expereinced the time lapse in what exact beast I am fighting?

Has anyone had the markers come back with not knowing which one it is?

Thoughts, recommendations and prayers welcome!

Hanlon

Hi Hanlon, based on the profile of the Dr. that you listed in bio, I would be looking for a melanoma specialist ASAP, since the bio stated that the oncologist you are dealing with is a Genitourinary malignancies expert specifically prostate!!! Melanoma is a world in itself and requires someone who is an expert in the field.https://www.cccnevada.com/doctor/oscar-b-goodman-jr-md-phd/

Thank you for replying and agree 100%, we are looking currently researching best place to go on west coast that has experience with  sarcoma//melanoma since it is now coming back as both.  It is insane to me that the actual diagnosis takes this long.  The newest lab to review the tissue is Biotheranostics in San DIego.

I really appreciate your reply.

 

Hanlon

Hey Hanlon,

I hope you get some good information soon.  It can be frustrating but in my experience, medical professionals can make mistakes.  My first tumor was found in my lung and was fully excised and diagnosed as aspindle cell carcinoid tumor originating in the lung with no lymphnode involvement.  I had no idea they could get the diagnosis wrong with the entire tumor sitting in front of them.  Evidently, it is not an exact science and several cancers carry similar markers so the pathologists become detectives using other clues.  In the meantime, you might end up with the wrong treatment.  In my case, I did no treatment as the surgery was deemed curative.  I got the correct diagnosis when I had a recurrence and the original tumor was then re-evaluated.  At the time, approved treatments for advanced melanoma were not highly successful so I suppose no harm no foul.  I still found it frustrating to not know for certain what it was that I had.  Best of luck getting your situation figured out.

Cheers!

Maggie

Maggie - Stage IV (lung mets unknown primary) since July 2012.  Brain mets September 2016.Taf/Mek, gamma knife, Keytruda resulting in clean brain scan and tiny remnants in lung as of July 2017

Thank you Maggie.  This new journey is one hell of one.  Thank you for sharing your story.

 

Hanlon

Thank you Maggie.  This new journey is one hell of one.  Thank you for sharing your story.

 

Hanlon

I agree you need a melanoma specialist. Honestly I woukd get evaluated by 2.  MD Anderson is a great place and on the leading edge of treatment.     I don’t know the west coast that well, 

Lucy

Thank you Lucy!  Setting up appointment for Huntman and MD.

Hanlon