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If this is cancer why doesn't it show up?

A nodule was found in my right lung in March of this year and my doctor had a PET scan done which was negative.

I have been coughing constantly for over a year now, have chest pain in my upper right lung, right shoulder, clavicle and into the jaw, right upper arm pain and pain between my shoulder blades, as well as abdominal pain in my left-sided abdominal area. Also the pain I was already dealing with in my hips has gotten worse in the last eight months.

After finding no cancer with the PET scan my case was more or less ignored unless I made a fuss about this cough which is now horrendous at times. Finally my pulmonologist ordered another CAT scan which now showed a larger nodule in a different location. One she was worried about.

Back for another PET scan which was negative again, More chest x-rays and a trip to the hospital for three days which would have been longer but since I don't have a spleen I like to get out of any hospital as soon as possible because I don't need a new infection.

Now they are waiting for me to have a biopsy done to rule out cancer or to see if it is possibly a blood clot since I've had numerous pulmonary embolisms due to a problem of excessive clotting in factor 8 and factor 9 in my blood.

While all this was going on I was having a hard time with my primary caregiver who would not listen to me about what I would or would not take for pain management. Now I am on morphine liquid and tussonex with codeine to control both pain and coughing and still have no answers as to what is going on.

It has been almost a year since all of this started to worry me. Yes, I am a smoker and have been for over forty=five years. No I will not stop smoking and will die sooner I know because of it, but that is my choice not anyone else's.

My question is if this is cancer why doesn't it show up on these tests? Also while it is taking forever to find if it is cancer isn't it allowing it to get worse? Any ideas on what I should be doing now to speed this along?

  1. I have non-small cell adenocarcinoma which does not show up on a PET scan. A biopsy confirmed cancer with my original tumors. My doctors told me it is possible my nodules don't light up because they are too small (under 3 cm) but more than likely it is because it is what is referred to as adeno in situ or minimally invasive adenocarcinoma, formerly known as Bronchioloalveolar carcinoma (BAC). A biopsy will confirm. Also, you should make sure the doctor is going to send the tissue sample out for genetic testing, I have attached 2 links to articles by our community member and editorial team about the testing. Wishing you all the best with your upcoming test and please feel free to reach out to us anytime. We are here for you. Warmly, Alisa, (LungCancer.net Team)

    https://lungcancer.net/living/precision-medicine-101

    https://lungcancer.net/living/biomarker-testing

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