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← Return to 6mm nodule in pleura
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Thanks to all for your support.
I'm actually from Finland and currently in care in comprehensive cancer center in Helsinki, Meilahti hospital. It is a university hospital.
I have been talking with the head of department who has consulted 2 pulmonologists, thoraic surgeon, radiologist, pathologist and another oncologist in a meeting. When I was told it needs to grow to certain size "because its so small and they might not see it during surgery" it made sense to me for a moment. But after giving it a thought, it started sounding like such a stupid excuse. Cancer that is "too small to be removed but can be seen in CT"?? LUDICROUS.
I'm definitely getting 2nd opinion and have already gotten an appointment at a private hospital to a doctor who specializes in rare cancers. Thanks for the encouragement.
My cancer is one with about 80 documented cases world wide since 1940's. The prognostic numbers are abysmal but that hopefully is mostly influenced by: 1. Lack of technology and scientific knowledge in 1940-1990 and 2. Most patients are of old age and have had multiple metastases at presentation.
At least if it comes to that, I can say on my deathbed that "my ball(s) are literally killing me". I just wish it wouldnt happen in another 20-50 years.
Most annoying part is that only I seem to be worried about this. My parents are saying that its nothing and I'll survive (maybe out of fear and to reassure), my brother and his wife, who is a doctor, is saying that its very common to have nodules and that its so small. Even my fiancée is saying that I'm young and strong and that its so small that it can't hurt me. Everyone is telling me to wait and do what the doctors tell me to.
I feel like my doctors and people around me aren't taking this seriously.
I've also been looking at German hospitals, if I could get into Hamburg for example. I tried looking what kind of costs Mayo clinic has, but couldnt find anything useful for my case. It would be "lung surgery" or "pleural surgery". I obviously dont have US medical insurance, but I am well enough off that I can personally "afford" several hundred thousand to save my life.
I'm glad for all the support. I hope I make out of it alive, but the pain in my chest keeps reminding me of its existence constantly.
Replies to "Thanks to all for your support. I'm actually from Finland and currently in care in comprehensive..."
Hi @janar, I'm glad you are keeping your sense of humor. This is a difficult time. My stepson went through testicular cancer a few years ago (age 29), just before his wedding, so my heart goes out to you and your fiancée. There were plenty of jokes that kept us snickering. I never thought I'd be talking about his private parts, ever. 🙂
I have stage four lung cancer, and the overall statistics are getting better, but they aren't good. I've already doubled the original estimate that the doctors gave me. The statistics for your rare cancer are hard to come by. We can't compare cases from even a few years ago with today, because treatments have advanced, and in your case, there are so few cases overall. You aren't a statistic. Non-cancerous lung nodules are common and most people don't even know they have them, but anyone that has dealt with cancer is on high alert when there is a new finding. That's understandable, and a valid emotion.
Family dynamics are difficult to work through. You may try telling them, that you just need them to listen and be supportive to your concerns. They are scared too, but they don't want to show that to you. They have been told that being positive and faithful can help beat cancer. It can help when the patient believes that too, but science plays the biggest part in beating cancer.
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You shouldn't have to deal with this at your age. We old folks have lived but you are just starting. Continue to advocate despite lack of support. Families who have not dealt with cancer much don't know how to support the patient except provide encouragement in the form of positivity. Optimism is a great asset to your health, but so is education on your rare condition. I have done an immune augmentation therapy in the Bahamas for 11 years post surgery/chemo/radiation. I suggest exploring Beta Glucan as a proven immune support. I have taken it all these years at the suggestion of the clinic doctors as I continue their treatment. I buy it on Amazon now. A book I have gained information from for complementary treatment is A Rebel's Apothecary by Jenny Sansouci. Adding in these complementary therapies can possibly benefit even when not supported by medically accepted research standards. Memorial Sloan Kettering Cancer Center mskcc.org has a very complete listing for potential side effects and drug interactions for herbal type products.
As I have progressed through this cancer journey where any new pain or symptom immediately triggers worries of a new metastasis, one of my Mayo surgeons said that a cancer pain is not going away, it will only get worse. We need to listen to our bodies. I sincerely hope that your chest pain is caused by stress and not cancer, and that you can gain that information sooner rather than later. It sounds like you are on the right track.