I was diagnosed with Pituitary cancer last year. Spread to my bones and my liver. Anyone else here have this rare cancer? I’m having a hard time finding doctors who know much about it. Other than at Mayo.
I see that this is your first post on Mayo Connect - welcome! I appreciate your post regarding Pituitary cancer. Rare cancers can be troublesome since not all doctors are familiar with them and that makes finding treatment more challenging. I have a rare form of cancer as well, neuroendocrine tumors, and the choices for treatment are not in abundance.
If you are comfortable sharing more information: How long have you had this diagnosis and what were your first symptoms? What types of treatment have you had so far?
I see that this is your first post on Mayo Connect - welcome! I appreciate your post regarding Pituitary cancer. Rare cancers can be troublesome since not all doctors are familiar with them and that makes finding treatment more challenging. I have a rare form of cancer as well, neuroendocrine tumors, and the choices for treatment are not in abundance.
If you are comfortable sharing more information: How long have you had this diagnosis and what were your first symptoms? What types of treatment have you had so far?
I live in St. Louis Missouri area.
Actually the doctors here wrote me off and couldn’t figure out what was producing so much ACTH so I went to Mayo in Rochester. Saw Dr Young and he immediately said I have a tumor somewhere else. They did a pet scan and found multiple tumors on mostly my hip and spine. Biopsy showed them as being pituitary corticotropin secreting carcinoma metastatic to bone.
Ive had radiation but not chemo yet. Had to take care of some other issues (surgeries) first.
I see that this is your first post on Mayo Connect - welcome! I appreciate your post regarding Pituitary cancer. Rare cancers can be troublesome since not all doctors are familiar with them and that makes finding treatment more challenging. I have a rare form of cancer as well, neuroendocrine tumors, and the choices for treatment are not in abundance.
If you are comfortable sharing more information: How long have you had this diagnosis and what were your first symptoms? What types of treatment have you had so far?
Thank you for providing some more information about your diagnosis and treatment. I'm glad to get to know your story a bit better. You must be very thankful to have found Dr. Young at Mayo.
Were the tumors found by MRI, CT scan or general x-ray? Do you have a lot of bone pain?
I look forward to hearing from you again and follow your treatments and your progress.
I'm also going to tag fellow members @kdubois@kariulrich@upartist and @jasonkwellls to bring them into this discussion. From what I understand, pituitary carcinomas are only found once they have spread. I'm so glad to hear that you have an accurate diagnosis now and are getting treatment.
Hello @unix4fun, this is interesting because pituitary tumors are usually benign. I'm glad to see that you are with Mayo now and hope you see progress with them. Is this a type of multiple endocrine neoplasia syndrome? (I assume no if it is in bone.) For additional info, there are several pituitary-based closed, private Facebook groups that you might consider joining.
Thanks everyone I’m very up to speed on pituitary tumors. I’ve had to deal with them quite a lot over the last 10 years. I’ve had 4 surgeries to date to remove them.
So yes these type tumors usually are benign. I was once told by Mayo doctors since 99% are benign they usually don’t even bother testing them for anything other than hormone stains.
I connected on this site because I was looking for anyone that had this same experience As I mentioned this cancer it is extremely rare. Unfortunately there isn’t much data to go off of so most Doctors are treating it like a brain cancer. Difference being the tumors we found recently are not on my brain, but secondary to my bones.
I love the Drs at mayo but it’s not really convenient due to the distance. I live in Missouri.
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Hello @unix4fun
I see that this is your first post on Mayo Connect - welcome! I appreciate your post regarding Pituitary cancer. Rare cancers can be troublesome since not all doctors are familiar with them and that makes finding treatment more challenging. I have a rare form of cancer as well, neuroendocrine tumors, and the choices for treatment are not in abundance.
As you mentioned Mayo, do you live near one of the Mayo facilities and is that where you are being treated now? Here is a link to the Mayo website where this type of cancer is explained more fully, https://www.mayoclinic.org/diseases-conditions/pituitary-tumors/symptoms-causes/syc-20350548
If you are comfortable sharing more information: How long have you had this diagnosis and what were your first symptoms? What types of treatment have you had so far?
I look forward to hearing from you again.
Teresa
I live in St. Louis Missouri area.
Actually the doctors here wrote me off and couldn’t figure out what was producing so much ACTH so I went to Mayo in Rochester. Saw Dr Young and he immediately said I have a tumor somewhere else. They did a pet scan and found multiple tumors on mostly my hip and spine. Biopsy showed them as being pituitary corticotropin secreting carcinoma metastatic to bone.
Ive had radiation but not chemo yet. Had to take care of some other issues (surgeries) first.
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Thank you for providing some more information about your diagnosis and treatment. I'm glad to get to know your story a bit better. You must be very thankful to have found Dr. Young at Mayo.
Were the tumors found by MRI, CT scan or general x-ray? Do you have a lot of bone pain?
I look forward to hearing from you again and follow your treatments and your progress.
Teresa
Hi @unix4fun
I add my welcome to Teresa's. There are a couple of discussions about pituitary tumors in the Brain Tumor group as well (https://connect.mayoclinic.org/group/brain-tumor-support-group/) You may be interested in seeing these:
- Video Q&A about Pituitary Tumors https://connect.mayoclinic.org/webinar/pituitary-tumors-26deda/
- Looking for others with Pituitary Adenoma https://connect.mayoclinic.org/discussion/i-like-to-now-if-their-is-anyone-who-has-been-diagnosed/
I'm also going to tag fellow members @kdubois @kariulrich @upartist and @jasonkwellls to bring them into this discussion. From what I understand, pituitary carcinomas are only found once they have spread. I'm so glad to hear that you have an accurate diagnosis now and are getting treatment.
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2 ReactionsHello @unix4fun, this is interesting because pituitary tumors are usually benign. I'm glad to see that you are with Mayo now and hope you see progress with them. Is this a type of multiple endocrine neoplasia syndrome? (I assume no if it is in bone.) For additional info, there are several pituitary-based closed, private Facebook groups that you might consider joining.
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Helpful -
Hug
1 ReactionThanks everyone I’m very up to speed on pituitary tumors. I’ve had to deal with them quite a lot over the last 10 years. I’ve had 4 surgeries to date to remove them.
So yes these type tumors usually are benign. I was once told by Mayo doctors since 99% are benign they usually don’t even bother testing them for anything other than hormone stains.
I connected on this site because I was looking for anyone that had this same experience As I mentioned this cancer it is extremely rare. Unfortunately there isn’t much data to go off of so most Doctors are treating it like a brain cancer. Difference being the tumors we found recently are not on my brain, but secondary to my bones.
I love the Drs at mayo but it’s not really convenient due to the distance. I live in Missouri.
-
Like -
Helpful -
Hug
1 Reaction