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← Return to 6mm nodule in pleura
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I talked to one of my doctors and it was like talking to a brick wall. Same excuse as before too small for removal with a hint of "we need to wait to see if it has metastasised elsewhere". I'm now concerned that instead of treating me, my doctors just want to wait for me to die. Instead of making me depressed that made me furious.
I figured out how to request an appointment at Mayo. My next hurdle is translating my medical records to english and requesting my imaging materials which could take anywhere from 5 to 30 days.
I'm going to do the translations myself. I'm proficient in english and I have masters degree in science so I know and understand a lot of medical vocabulary too, and those that I dont know, I know how to figure out.
I need to do this anyway to send out my records to Germany and Austria as well. I'm inclined to accept the first opportunity at surgery.
Replies to "I talked to one of my doctors and it was like talking to a brick wall...."
@janar, it looks like you already found the request an appointment form for Mayo Clinic here: http://mayocl.in/1mtmR63
During the submission process, you will be asked if you live outside the US. The next step will be a telephone appointment with a scheduler to find out more. You will be able to ask about cost and insurance coverage and other questions you may have. When you speak with the scheduler, please ask them about translations of medical records. Your English is obviously very good, but I wonder if medical institutions, including Mayo Clinic, might require medically certified translations.
Every year, patients from more than 150 countries travel to Mayo Clinic for care. Here is more information about International Patient Services at Mayo https://www.mayoclinic.org/departments-centers/international
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@janar , I have no medical training, but it does indeed sound like you are talking to a brick wall. Waiting to see if it has metastasized elsewhere is the worst example of medical practice I can imagine. Once it has metastasized somewhere else they CAN see, it has probably also metastasized to several other places they CAN'T see.
Experience getting my dad into the Mayo Clinic in Florida was challenging because they are so specialized. My dad's initial biopsy was positive for a malignant cancer of some type, but initially inconclusive as to lung cancer or pleural mesothelioma. Once it was confirmed by hometown doctors to be mesothelioma, Mayo agreed to see him (since they could then assign the right specialist) but it was not a quick process. 🙁
Last month, I had a CT-guided biopsy of a 9-10 mm tumor (pancreas metastasis) on the anterior wall of my peritoneum (abdominal). It was done under general anesthesia because I was also having a port placed, and my (US-based) private insurance covered it. Being close to the surface pf my skin, it was a pretty easy target to hit with a core needle. Their big concern, since this was part of a research study, was that they simply wouldn't be able to collect enough tissue to satisfy all the researchers (which turned out to be true).
A different surgeon had also told me that particular tumor was a pretty easy target for a core needle biopsy and which could be performed under local anesthesia (much cheaper). He added that if I wanted to remove the entire tumor laparascopically, it would cost over $30000 US, with the majority of that being the cost of general anesthesia. I just cite this as a possible upper bound since you said you had resources to cover some of the costs yourself.
As mentioned, I have zero medical training, but the location you described "attached to the pleura periphery, anteriorally next to right side top lobe" sounds to me like something a good surgeon (or interventional radiology surgeon) could reach with a core needle biopsy under local anesthesia. Hopefully you can get a good second/third opinion somewhere with a very affordable biopsy from a qualified provider in Europe. My dad's biopsy was done under general anesthesia because they found several nodules to biopsy and were also placing a Pleurex drain/catheter at the same time.
Once they biopsy your tissue, if the pathology report identifies any malignant cells at all, I would take a number of steps:
1) Send the pathology slides to another lab for second opinion / confirmation of cancer type. This may also help you get past the specialist gatekeepers at places like Mayo.
2) Send a tissue sample out for NGS (Next-generation sequencing) at a lab like Tempus, to identify any mutations that may provide actionable targets
3) Send some tissue to Natera Corp. for creation of the "Signatera" test to monitor for microscopic residual disease as you undergo treatment
4) Find another doctor to provide your treatment, because if you have a malignant cancer and the doctor is/was willing to wait for metastases, this is not a doctor you want to trust with your young life!!!
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Steps you can take in the interim, especially if you have resources:
1) Increase the frequency of your CEA testing, and continue plotting the trend,.
2) Get a germline DNA test (blood or saliva) like Invitae to see if you have inherited any genetic mutations that increase your risk of cancer. A positive result may move you to a "faster" line that allows more frequent/comprehensive tests as a high-risk patient, and also help guide future treatment.
3) Consider a somatic DNA mutation test like Guardant 360. This can identify cancer DNA in your blood and also help direct future treatment. (It reports mutations, tumor mutational burden, microsatellite instability, etc).
4) Consider a multi-cancer panel test like the Galleri test from Grail. It might identify malignant cancer DNA and possibly pinpoint location/organ of origin.
None of these are guaranteed to identify or prove anything, but they do offer additional views that your doctors have apparently not taken advantage of yet, and might lead to action being taken sooner rather than later if necessary.
I hope something works out. Wishing you and your family (present and future) all the best!