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.
Hello,
I am Dee and I am new to this group. I am 59 years old and I have pituitary tumors. In 2016, I had a pituitary tumor removed. In four years more came back. It has been a struggle since. I am 5'2 and went from 120 lbs. to 209 lbs. I have had lab test and my test do not denote Cushing's, the doctors say, but I have all the symptoms. Its very hard to find a good doctor that understands. By abdomen is extended like I am 8 months pregnant. Its quite embarrassing. My cholesterol is very high. I stay exhausted. I have head discomfort on my right side. The endocrinologist I had seem to not care and lacks interest. Finding a neuroendocrinology doctor seems impossible. Medical doctors are at a loss. The only option seems like surgery. I do not want to keep getting repeated surgeries. The last time I had surgery I lost my sense of smell. The surgeon never warned me this could happen. Does this mean the next surgery, I could loose my smell all together? I urinate a lot enabling me to enjoy life. I am at a loss and don't know what to do. I have an appointment at the Cleveland Clinic this fall so hopefully I may get some answers. I don't live near the Mayo Clinic or I would have made an appointment at Mayo. Advise or direction will be appreciated.
@unix4fun
Hello, I am sorry to hear your news. I hope and pray you are well and getting better. I had a pituitary tumor removed in 2016 but in 2020 a couple came back. I have gain so much weight and I have all kind of symptoms no one seems to narrow them down. When it comes to pituitary tumors, PC doctors seem passive and dismissive because they don't know how to handle the issues. The only recommendation is to see a endocrine doctor. Please let me know how the doctors discovered that your tumor was cancerous since they are almost always benign. What treatment did they give you to deal with the cancer? Did you loose your sense of smell when you had your tumors removed in the past? I did? I can smell but not profound like before. I wish I was able to have a conversation with you so I can compare progress notes. I hope you are doing well and I look forward to hearing from you, if possible, all my best.
Hello,
I am Dee and I am new to this group. I am 59 years old and I have pituitary tumors. In 2016, I had a pituitary tumor removed. In four years more came back. It has been a struggle since. I am 5'2 and went from 120 lbs. to 209 lbs. I have had lab test and my test do not denote Cushing's, the doctors say, but I have all the symptoms. Its very hard to find a good doctor that understands. By abdomen is extended like I am 8 months pregnant. Its quite embarrassing. My cholesterol is very high. I stay exhausted. I have head discomfort on my right side. The endocrinologist I had seem to not care and lacks interest. Finding a neuroendocrinology doctor seems impossible. Medical doctors are at a loss. The only option seems like surgery. I do not want to keep getting repeated surgeries. The last time I had surgery I lost my sense of smell. The surgeon never warned me this could happen. Does this mean the next surgery, I could loose my smell all together? I urinate a lot enabling me to enjoy life. I am at a loss and don't know what to do. I have an appointment at the Cleveland Clinic this fall so hopefully I may get some answers. I don't live near the Mayo Clinic or I would have made an appointment at Mayo. Advise or direction will be appreciated.
Hello, first of all, I'm sorry for what you're going through. First of all, I suggest you be proactive about Cushing's. Doctors aren't very familiar with this disease. I suggest you make an appointment with an endocrinologist and request ACTH and cortisol tests. A general practitioner will almost never diagnose Cushing's syndrome.
Cushing's syndrome still has visible symptoms: a moon face, stretch marks, thinning of the lower and upper limbs, a hump under the neck, skin pigmentation, and facial hair growth. If you notice that all or some of these symptoms are visible, be sure to consult your doctor.
Connect
Connect
Like
Helpful
Hug
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
-
Like -
Helpful -
Hug
2 ReactionsI 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.
-
Like -
Helpful -
Hug
1 Reaction@unix4fun
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.
-
Like -
Helpful -
Hug
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.
-
Like -
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 ReactionHello,
I am Dee and I am new to this group. I am 59 years old and I have pituitary tumors. In 2016, I had a pituitary tumor removed. In four years more came back. It has been a struggle since. I am 5'2 and went from 120 lbs. to 209 lbs. I have had lab test and my test do not denote Cushing's, the doctors say, but I have all the symptoms. Its very hard to find a good doctor that understands. By abdomen is extended like I am 8 months pregnant. Its quite embarrassing. My cholesterol is very high. I stay exhausted. I have head discomfort on my right side. The endocrinologist I had seem to not care and lacks interest. Finding a neuroendocrinology doctor seems impossible. Medical doctors are at a loss. The only option seems like surgery. I do not want to keep getting repeated surgeries. The last time I had surgery I lost my sense of smell. The surgeon never warned me this could happen. Does this mean the next surgery, I could loose my smell all together? I urinate a lot enabling me to enjoy life. I am at a loss and don't know what to do. I have an appointment at the Cleveland Clinic this fall so hopefully I may get some answers. I don't live near the Mayo Clinic or I would have made an appointment at Mayo. Advise or direction will be appreciated.
@unix4fun
Hello, I am sorry to hear your news. I hope and pray you are well and getting better. I had a pituitary tumor removed in 2016 but in 2020 a couple came back. I have gain so much weight and I have all kind of symptoms no one seems to narrow them down. When it comes to pituitary tumors, PC doctors seem passive and dismissive because they don't know how to handle the issues. The only recommendation is to see a endocrine doctor. Please let me know how the doctors discovered that your tumor was cancerous since they are almost always benign. What treatment did they give you to deal with the cancer? Did you loose your sense of smell when you had your tumors removed in the past? I did? I can smell but not profound like before. I wish I was able to have a conversation with you so I can compare progress notes. I hope you are doing well and I look forward to hearing from you, if possible, all my best.
Hello, first of all, I'm sorry for what you're going through. First of all, I suggest you be proactive about Cushing's. Doctors aren't very familiar with this disease. I suggest you make an appointment with an endocrinologist and request ACTH and cortisol tests. A general practitioner will almost never diagnose Cushing's syndrome.
Cushing's syndrome still has visible symptoms: a moon face, stretch marks, thinning of the lower and upper limbs, a hump under the neck, skin pigmentation, and facial hair growth. If you notice that all or some of these symptoms are visible, be sure to consult your doctor.
View Translation