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Lung Ca met suspected but tests say Sarcoma instead

Crackerjack4u
Posts: 2
Joined: Oct 2018

Hello All, 

I am a newbie here, and hope I'm posting this in the correct location.

My hubby was diagnosed with lung cancer in 2016 when a very small 2.2 tumor was found by accident in the lower lobe of his right lung. We attempted to have it sugically removed but the surgeon once he got in there said that there was too much scar tissue to do it via laser and that the only way to remove it would be to completely open him up remove ribs etc in order to remove it and with my hubby's other health issues didn't feel that was the best choice for him at the time due to the tumor being small, and also being well contained inside the lung with little chance of it spreading any time soon.   So off to radiation therapy he went.  He was given 5 radiation treatments and the Petscan after the last treatment showed that the tumor had shrunk to less than half it's original size, and we were to repeat Petscan in 6 months.  

4 months afer his last radiation treatment on 8/24/18 I took him to ER with unrelieved chst pain which eventually moved to his epigastric region. EKG was normal, and his gallblaader had already been removed so we knew it wasn't his gallbladder causing the unrelieved pain so they did a catscan.  CT revealed 2 very large massess 4+cm each, one on each adreneal gland and 2 enlarged lymphnodes- 1 in his left underarm area and 1 in his abdomen. Lung cancer mettastasis was supected.  Biopsy on one of the enlarged lyphnodes was done on 9/14/18, follow up to Oncologist on 9/25/18 we were met with the oncologist saying that the Final report is not completeld yet but they do hava Preliminary report and the findings so far are "Weird, and not at all what we were expecting to find."   He said we were expecting to find lung cancer metastasis but instead all the testing is pointing towards a Sarcoma instead. 

 

Follow up appt scheduled for 1 week in hopes that the Final report was completed so he can start treatment that was on 10/2/18, But nope still just the Preliminary report (whihc is leaning towards EWING/PNET, and now not only do they still not have a  diagnoses they have also ran out of tissue for further testing, and instead of wanting a needle biopsy this time they want an entire lymph node so they can visualize it and also ensure they have enough tissue to ensure they don't run out of tissue this time. He has an appt with the surgeon this afternoon to schedule the surgery but he also takes blood thinners and will have to be off of those for 5 days beforehand, so he'll probably be scheduled for the middle to end of next week.

 

I understand that getting the right diagnoses often takes time especially with Sarcoma because it is so rare, but my main concern right now is how rapidly my husband's health is declining in the process. Whatever this is it is very aggressive.   He weighed 204 on 8/24/18 and at the 10/2 appt he was down to 183.8, he is tired, weak, having a lot of pain, having a lot of nausea and vomiting, and is just really going downhill quickly and my heart is breaking becuase I can't stop this and can't get him any treatment right now becuase they can't get a definative diagnose.  He is also having some pain in 1 part of his jaw area over his jaw bone, that both the doctor and I both have checked which is making eating difficult for him to do.  There is no open area in his mouth, so whatever is causing that pain has to be inside soemwhere-perhaps another enlarged lymph node, cancer in the jaw bone etc.?  We've tried mouthwash, salt water rinses, and Oral Gel to help relieve that pain without sucesses. 

 

I'm plannng on asking the surgeon today just to put him on a run of antibiotics incase it is an abscess under the surface, but even though I am a RN, I'm at a loss here on all of this.  I feel like we are standing in the middle of a room and all this information (or lack of information), aggressiveness, pain, decline, etc is encirling us at this rapid speed that I'm afraid is moving too quickly, and we aren't going to have enough time to get it to stop in time to help him.  

Any one else experienced anything like this with your Sarcoma?  Anyone have any suggestions on how to help his mouth pain, weightloss, Nausea, vomiting, pain, etc. that isn't already being done?  Ive got him put on Marinol, have 100% CBD oil coming in, started him on Ensure, I am keeping his pain, and nausea and vomiting treated with the Marinol, phenergan, and  Zofran.   I'm ensuring that what he is able to eat is healthy but with the mouth pain I also have to ensure it's soft enough to not increase the mouth pain too.  Does anyone have any suggestions because we could sure use some help here.  Thank you and I'm sorry this ended up beiing so long.   Have a nice day and God Bless.    

  

Crackerjack4u
Posts: 2
Joined: Oct 2018

Hello All,

The surgeon decide to not take the extra week to remove my DH off his blood thinners prior to his surgery because he is declining so rapidly.  He said hubby doesn't have an extra week to spare.  Surgery was done on 10/5/18 and hubby is recovering well from that. Thankfully, now the testing can continue, hopefully very quickly we can get a Final report so treatment for whatever this is can begin.   This waiting game is horrible.  I just pray that they get a diagnoses in time becuase things here aren't looking too good at all.  I hope everyone has a nice day.  CJ 

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