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

Hello @tls, and welcome to Mayo Clinic Connect. Your concern about the CT results is certainly understandable. Please be aware that in-between visits, you can always contact your doctor's office through either the patient portal or by phone if you need help understanding test results.

Since you had a CT scan were you having any digestive difficulties or pain that you brought to the doctor's attention?

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Yes. I have had extreme pain. Couldn’t eat. Couldn’t sleep. Major fluid build up in abdomen I find all odd. I am not at Mayo but thinking I need to move there

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@tls

Yes. I have had extreme pain. Couldn’t eat. Couldn’t sleep. Major fluid build up in abdomen I find all odd. I am not at Mayo but thinking I need to move there

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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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@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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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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@hopeful33250

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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He was referring to a regular CT with contrast that they did in my hometown ER to the special protocol CT w/contrast at their center about 10 days before. My blood work showed slightly low red blood count, lowered Total Proteins and Anion Gap.

I am aware of Mayo Jacksonville. I grew up with Mayo MN as THE place of experts. Is the Jacksonville team of the same caliber?

Back to the timing, when they first found your IPMNs did they move quick to lock at with MRI or was it a wait? Also, who is the main specialist that oversees your pancreas care: gastro, endro or some other specialty?

Thank you for your input
Toni

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@tls

He was referring to a regular CT with contrast that they did in my hometown ER to the special protocol CT w/contrast at their center about 10 days before. My blood work showed slightly low red blood count, lowered Total Proteins and Anion Gap.

I am aware of Mayo Jacksonville. I grew up with Mayo MN as THE place of experts. Is the Jacksonville team of the same caliber?

Back to the timing, when they first found your IPMNs did they move quick to lock at with MRI or was it a wait? Also, who is the main specialist that oversees your pancreas care: gastro, endro or some other specialty?

Thank you for your input
Toni

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@tis Hi Toni,

You asked about the timing of my tests after the CT showed the pancreas cysts. No, they told me I should get an MRI but the sense from the CT scan indicated that it probably wasn't cancer, so I waited a while before scheduling the MRI. I then had the EUS and again it was confirmed that it was most likely nothing to be overly concerned about. I've known about these cysts for a long time now and as there has been little to no change in the cysts, I believe that in my case, they are not something to be over-concerned about. I have not had the severe symptoms that you have experienced either.

I am glad that you are familiar with Mayo Clinic. While I have not been to Mayo Clinic in Florida myself, from all I've heard from others, the Florida Mayo Clinic is highly regarded. If you call to make an appointment you will explain your problem and they will set you up with a physician who can best treat that kind of problem. Here is information regarding scheduling an appointment, https://www.mayoclinic.org/appointments?mc_id=us&utm_source=connect&utm_medium=l&utm_content=disc.

Keep in touch, Toni. Will you post again?

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Thank you – yes will post more after each step. The knowledge shared here is very important. I am not afraid as much as a get it done person. That is why I ask about the timing. In doing so I just realized it was 3.5 months between incidental finding of the spot on the lung to biopsy, PET scans, to surgery. It seemed to fly but truly did not happen overnight. During this process they also found a large mass in my maxillary sinus. Because it was so large and "glowed" such more than the lung they took it out first – about 2 months start to finish. 2 months later started the official lung process. I seem to grow things that really do not belong so the quicker I know that the quicker we can determine action – whatever that might be.

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@tls

Thank you – yes will post more after each step. The knowledge shared here is very important. I am not afraid as much as a get it done person. That is why I ask about the timing. In doing so I just realized it was 3.5 months between incidental finding of the spot on the lung to biopsy, PET scans, to surgery. It seemed to fly but truly did not happen overnight. During this process they also found a large mass in my maxillary sinus. Because it was so large and "glowed" such more than the lung they took it out first – about 2 months start to finish. 2 months later started the official lung process. I seem to grow things that really do not belong so the quicker I know that the quicker we can determine action – whatever that might be.

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@tis, Your history of finding masses can certainly make you want to do things as quickly as possible. I certainly get that. I'm also happy that you have found the information on Connect helpful. We are all patients like yourself, who share our experiences.

I wish you the best! We also have a group for members with lung cancer. Merry, @merpreb, is the mentor for that group. She is a lung cancer survivor for 23 years.

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One step forward. The GU returned my message today and I am set up to see the Gastro oncology surgeon/specializes in pancreas. First available is the 26th of April. Endro specialist is still the 12th. Will let you know of findings. Thanks so much for your information. Calming.
Toni

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@tls

One step forward. The GU returned my message today and I am set up to see the Gastro oncology surgeon/specializes in pancreas. First available is the 26th of April. Endro specialist is still the 12th. Will let you know of findings. Thanks so much for your information. Calming.
Toni

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Hello @tls,

We do learn to celebrate each appointment and progress made! I look forward to hearing more about your appointments. I always appreciate when members follow-up with updates!

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@tls

Thank you – yes will post more after each step. The knowledge shared here is very important. I am not afraid as much as a get it done person. That is why I ask about the timing. In doing so I just realized it was 3.5 months between incidental finding of the spot on the lung to biopsy, PET scans, to surgery. It seemed to fly but truly did not happen overnight. During this process they also found a large mass in my maxillary sinus. Because it was so large and "glowed" such more than the lung they took it out first – about 2 months start to finish. 2 months later started the official lung process. I seem to grow things that really do not belong so the quicker I know that the quicker we can determine action – whatever that might be.

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@tls– I also welcome you to Mayo Clinic Connect. I am getting angry for you, being side-stepped like that by the first doctor. grr. Ok, first I am not a pancreatic patient but as Teresa mentioned a lung cancer survivor. For lumps, bumps, cysts, lesions, and tumors that aren't alarming a wait of 3 months is standard to see if there are any growth changes.

I'm confused as to what is going on now. Are you in a waiting mode? Did you get the results of all of your tests, including MRI and CT's?
What did the doctor mean that nothing looked different to him- from what? Had you had previous tests on all of what was found?

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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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