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tls (@tls)

Should the cysts be looked at sooner

Pancreatic Cancer | Last Active: Jun 17 7:43pm | Replies (15)

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@tls

I am a former lung cancer patient. 5 year mark after lobectomy all good there except fluid showing in lower left lung area-. There was an incidental finding of a adenoma on my left adrenal gland. I also have thyroid autoimmune issue. I referred to a well known cancer hospital in Tampa Florida (the state I live in.) I am also having extreme swings in moods, voice, bowel habits, most body functions including major bloating in abdomen When they did the CT of my adrenals they reported this finding regarding my pancreas on paper but have yet to mention at all too me. I had/have a large lump on my left upper shoulder/neck (biopsy benign) Before CT results the GU surgeon had already referred me to Endro. I do not see her until the 12th. The pain on my upper front, side was severe enough for ER. They only said to get back to the cancer hospital in no more than 2 days. I did and the response from him was nothing looks different to me. My experience in another state in another well known facility was so different. I question the timing of all of this and also response received. If this is normal timing/response I just need to know so I will have patience else I need to push forward. BTW – I did contact Endro but since I had never had a first patient appt. with her they could not say or do anything. There was no opening early to see any of them. I have a follow up with the GU on the 5th, He mentioned gastro for upper GI review but no referral yet even after follow up question. Is this normal, if not what should I push for or move on? Much thanks.

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Replies to "I am a former lung cancer patient. 5 year mark after lobectomy all good there except..."

Hello again @tls,

Given the added information about your cancer history and your current symptoms, I can certainly understand your concerns better now. You were told, "nothing looks different to me." Was that in response to this CT and your concerns about the pancreas? Here is a little information about IPMN from Mayo Clinic's website, which may be helpful to you, https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/more-data-needed-to-guide-pancreatic-cyst-management/mac-20430487

I also have had 3 surgeries of the upper digestive tract for a rare form of cancer, carcinoid cancer. I also have IPMN so I understand how worry can take a toll on you. In the several years that I've known about the IPMN, I have had one EUS and numerous follow-up MRIs (an MRI is a better way to view pancreatic cysts) and in the years when I don't have an MRI, I have blood tests to check the functioning of the pancreas. It is important, as you know, to be your own advocate.

No one can say what is a "normal" follow-up time, but it is very important to be your own advocate for health care. You mention living in Florida. Are you aware that there is a Mayo Clinic in Jacksonville, FL? If you feel that your concerns are not being addressed in a prompt matter, you might consider a consultation at Mayo. Here is information regarding scheduling an appointment. https://www.mayoclinic.org/appointments?

In the meantime, I see that you have some follow-up appointments on the 5th and then a new appointment on the 12th. Please bring a list of your questions and concerns to these appointments.

Given your many symptoms and your health history, I would encourage you to find a medical team that will be responsive to your concerns. I look forward to hearing from you again. Will you keep in touch and post again regarding your progress?

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