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DH lung ca met suspected but Sarcoma instead


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Old 09-26-2018, 09:17 PM   #1
Crackerjack4u
(female)
 
Join Date: Oct 2014
Location: Kentucky
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DH lung ca met suspected but Sarcoma instead

Hello All, newbie here to searching for answers on this site, and also to the spreading of cancer.
My hubby has had Lung Cancer since 2016, went to have the lobe removed but they couldn't remove it due to too much scar tissue so he had radiation instead. Radiation appear to be working, lung tumor shrinking, until 8/24/18 set him to the ER with unrelieved pain in his chest which moved to his epigastric region-his gallbladder has been removed.

CT revealed a large mass approximately 4cm on each of his adrenal glands (which we know for certain were not there 7months before as a Petscan at time would have revealed them), and a couple of enlarged lymph nodes. Lung Cancer Metastasis was suspected at that time.

A Biopsy was done on 9/14/18 to one of the enlarged lymph nodes. My DH has already decided that he does not want to have chemo but is willing to do Immunotherapy which had previously been discussed with the Oncologist prior to the biopsy.

Follow up appt on 9/25/18 to Oncologist to get the biopsy results was stated out with the doctor saying that "We only have a Preliminary report not a definitive diagnoses yet because they are still working on it, but what they have found so far is Weird, and not at all what we were expecting to find"). He said they were expecting to find lung cancer metastasis, (as were we), but instead all the tests so far are pointing to Sarcoma instead. 1st Preliminary stated: "Vimentin positive poorly differentiated epitheloid malignancy"

He HAD another appt Oct 2, 2018 still Preliminary report only said: "The 2nd Preliminary showed The current immunohistochemical signature is non-diagnostic, but could be seen in several neoplasms, including Ewings/PNET. Additional studies are Pending; a final report will be issued when the latter are complete"

We were told they are now out of tissue to continue testing and want an entire lymph node instead of a needle biopsy this time. He had surgery on 10/5/18 to remove the entire lymph node and he is recovering well from surgery. His health, weight, etc. continue to decline very rapidly. He is having random pains in so many areas. Arms, legs, feet, hands, back, chest, abdomen, and mouth and from the research I've done it could be basically any one of them, so I guess that's where the hold up is on them getting a Final Report and definitive diagnoses on this.


Has anyone else on here went through anything similar to this on this or other types of Sarcomas, and if so where did you go from there? Has anyone had issues where the actual diagnoses was Not found? This is all just so heartbreaking and frightening to both of us, and we really thought after his very difficult start to treatment (not being able to remove the lung tumor),then having to get radiation, and that the lung tumor was still shrinking etc. that he was well on his way to kicking lung cancer's butt, and then this suspected Sarcoma has reared it's ugly head. Of course we are not 100% sure yet if it is a Sarcoma, but all signs are pointing that way, and if not Sarcoma, not lung ca metastasis then what could this be that is attacking my dear husband so quickly and so aggressively?

If it is Sarcoma, I'm wondering if the Radiation treatments he had done for the lung cancer might have started the ball rolling on it, or would Immunotherapy even an option if it is Sarcoma? To tell the truth, we both are wondering about a million different things right now while trying to make sense of all of this, and we have so many unanswered questions.

Any answers, letting me know your Sarcoma journey, your friendship, your prayers, etc. would all be appreciated. Thank you, and have a wonderful night!! CJ

Last edited by Crackerjack4u; 10-07-2018 at 11:58 AM. Reason: Added in additional appt info and surgery details

 
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immunotherapy, lung cancer, sarcoma



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