Should the cysts be looked at sooner

Posted by tls @tls, Mar 30 8:14pm

Stable cystic lesions in head/uncinate 1-1.1 cm; incidental side branch IPMNs. No enhancing lesion or main duct – this was the wording on CT report performed for a adenoma on my left adrenal gland. This was completed and reported 3 weeks ago but no doctor has mentioned it to me in the 3 weeks. I have a general follow up with him at the 4th week mark. Is this timing normal? What should I expect to hear from him at that time for next steps? Toni

@tls

Merry – thank you. Happy to say just passed my 5 years post lung cancer/surgery/etc. Thank you for being angry on my behalf. I had such outstanding medical support when lung cancer was found and the lovely tumor in the max sinus. I started with head and neck dr. for large lump on neck, he referred to GU for adenoma on my left adrenal, he referred to Endro for my extreme body changes and moods, have had high to extreme pain in left side for better part of 2 months -told him that and then saw the CT results on pancreas. I contacted him 3 times; the first after landing in my local ER due to the pain, neither of them wanted to commit to anything, I contacted him a second time and he told me to get with my PCP for gastris, they have yet to return my call, got with the GU again and he said maybe I needed a Upper GI review but no referral, that was the entire message, my last contact with him was to ask if I needed him to refer and he said no I could do myself. I am glad I know how to push and be in charge of me. After 2 hours of being on hold, transferred, more hold, run arounds for not having a referal I got an appointment with one of the most Sr. staff of the Gastro department. She has a specialty of pancreas, surgery, diet, following cysts that are not defined as cancer yet, etc. It is the 26th of April but at the 2 month mark of when I started with this center. This all actually started on March 8 of last year when my body started doing all sorts of bizarre things. Local docs look at the obvious but do not dig deep. So GU follow up on big picture 5th (wonder what he will actually discuss), Endro on the 12th to continue that process (GU started the blood work on the 13th or March) and now the new Gasto/Pan dr on the 26th of this month. She has a gret reputation so feel better BUT what happens to people that will not push as hard as me – don't know that they have to. BTW – to repeat this is NOT Mayo.

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@tls– People who don't push their doctors for answers are left by the wayside. It's a very, very awful situation. Back a generation people didn't want to "bother" their doctors. SOme people feel this way today. All I can do is encourage people to do so.

You just gave me an idea!

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@tls

Merry – thank you. Happy to say just passed my 5 years post lung cancer/surgery/etc. Thank you for being angry on my behalf. I had such outstanding medical support when lung cancer was found and the lovely tumor in the max sinus. I started with head and neck dr. for large lump on neck, he referred to GU for adenoma on my left adrenal, he referred to Endro for my extreme body changes and moods, have had high to extreme pain in left side for better part of 2 months -told him that and then saw the CT results on pancreas. I contacted him 3 times; the first after landing in my local ER due to the pain, neither of them wanted to commit to anything, I contacted him a second time and he told me to get with my PCP for gastris, they have yet to return my call, got with the GU again and he said maybe I needed a Upper GI review but no referral, that was the entire message, my last contact with him was to ask if I needed him to refer and he said no I could do myself. I am glad I know how to push and be in charge of me. After 2 hours of being on hold, transferred, more hold, run arounds for not having a referal I got an appointment with one of the most Sr. staff of the Gastro department. She has a specialty of pancreas, surgery, diet, following cysts that are not defined as cancer yet, etc. It is the 26th of April but at the 2 month mark of when I started with this center. This all actually started on March 8 of last year when my body started doing all sorts of bizarre things. Local docs look at the obvious but do not dig deep. So GU follow up on big picture 5th (wonder what he will actually discuss), Endro on the 12th to continue that process (GU started the blood work on the 13th or March) and now the new Gasto/Pan dr on the 26th of this month. She has a gret reputation so feel better BUT what happens to people that will not push as hard as me – don't know that they have to. BTW – to repeat this is NOT Mayo.

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I finally had the EUS and the special MRI. I have added several small cysts and the original one has grown but is still only 1.1cmx.8mm. My main duct is 3mm at smallest and 5mm at largest. They also took biopsy of esophagus and stomach. All manageable at this time. The special MRI will be repeated in 6 months. It will also show the adenoma on my left adrenal gland. So far wait and watch. After the 6 month they will decide what is next: 6 month scans, 12 month scans or surgery. Very optimistic. Thanks for the support

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@tls

I finally had the EUS and the special MRI. I have added several small cysts and the original one has grown but is still only 1.1cmx.8mm. My main duct is 3mm at smallest and 5mm at largest. They also took biopsy of esophagus and stomach. All manageable at this time. The special MRI will be repeated in 6 months. It will also show the adenoma on my left adrenal gland. So far wait and watch. After the 6 month they will decide what is next: 6 month scans, 12 month scans or surgery. Very optimistic. Thanks for the support

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@tls, your optimism comes through in your message. I'm relieved that everything is manageable at this time. Thumbs up.

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