Pituitary Macroadenoma-Operate or Wait?

Hi @mkedave, I'm tagging a few members like @stkarlen @tobyisaacs @drs22 @astaingegerdm, who have experiences with pituitary macroadenoma and may be able to add some thoughts to your post.

You are asking good questions. Concerns about not having surgery might be best answered by your surgeon. Have you thought about talking to a social worker about how to navigate the possible insurance implications?

Did your surgeon say that the tumor will continue to impact your eyesight?

Thanks for your reply!
I have good health insurance currently, I'm just concerned about my insurance changing to something less comprehensive if I have to change jobs.

My surgeon says it may continue to grow, and it may not. I understand there is no way to know. I am hoping to get some input from people who have personal experience and have thoughts on the pros/cons of having the surgery. The neuro ophthalmologist says the tumor is just touching the optic nerve, but tests continue to show no visual impairment. She says that if it continues to grow, that visual impact is inevitable, albeit slow. Surgeon says the same.

Hi @mkedave! I'm sorry you are going through this. I had a pituitary macroadenoma removed last April that was producing excessive growth hormone. I had horrible headaches and muscle pain in my head and neck for as long as I can remember. My surgeon said it was most likely there for at least 10 years. I'm just so glad we finally found the cause of all the pain. My tumor was partially wrapped around the carodid artery so they were able to remove about 95% of it which should likely keep it in remission and keep my growth hormone levels stable. Having the surgery was the best decision I've ever made. It gave me my life back quite honestly! Your situation may seem less urgent but the tumor will most likely keep growing and eventually cause issues with your optic nerve....and then it becomes harder for the surgeons to navigate and operate. I'm also not sure how your other condition factors into things. I can speak to the surgery. For me, I was in and out of the hospital in 24 hours in Rochester. Surgery was 7 am and I was discharged the following morning. I had a Neuro and ENT surgeon as well as anesthesia doc operating and an amazing team of nurses supporting them. They usually do the surgery endoscopically (through the nose) and it's a little uncomfortable for about a week after (your nose is healing, so you'll feel congested until you get back to see the ENT and they clean your nose out). It just feels like a cold where you have to breath through your mouth. It took about 6 months I think to regain my taste/smell fully but everything came back and is normal now. I don't have any other long term side effects from surgery. I will need to continue going in for follow up MRI's annually for a while. Don't be afraid of the surgery! I was hesitant at first too but Mayo surgeons are amazing. I would definitely let mayo check into your insurance coverage for you. They will provide you an estimate for your procedure before hand which is SUPER helpful. Let me know if you have any other more specific questions. Happy to continue the conversation and I'll be praying that you find the best pathway forward!

Underwent FIVE (5) TSS (Transsphenoidal Excision of Pit. Tumor) surgeries - if this is best course of action for you, then do it. I had absolute faith in my surgeon but the last surgery 2017 ( I flew in a plane 3 days post-surgery) and got the things feared: CSF Leaks, meningitis and a pulmonary embolism.
I have a very aggressive tumor that two Radiations (2006 and 2019) cant stop from growing...and now the last resort --- TEMOZOLOMIDE . I'd be anxious to communicate with anyone going through chemo with this drug. I'd be happy to share any and all experiences (past and future) about AP's.

My husband's pituitary macroadenoma was discovered in August 2021 and removed the following October, using the transsphenoidal approach . His pituitary did not regain function because it had been squished for an unknown amount of time, so he now has to take multiple hormones that his body cannot provide. His neurosurgeon couldn't believe that vision was unaffected, as the tumor was pressing up into the optic chiasm, as well. His recovery has been slow because it took time to get the dosages at the correct levels, and he has ongoing cognitive, sleep, energy and balance issues that we are working through, now that they cannot be attributed to getting the hormones in appropriate ranges.
We are 57, so this early retirement for health issues was a real curveball, but we are making the most out of the unexpected.

One year ago after failing miserably at quarterly eye exam - sent to ER. After Many hours MRI found Pituitary Macroadenoma measuring 30MM. It was so slow growing and undiagnosed despite many health issues until I was 74 years old. I suffered more and more problems as I aged and it was treated with more prescriptions. The surgery was handled with great success and recovery while restrictive was complete. My regret is that I would have preferred the tumor had been found much sooner. I would have definitely proceeded with the removal at the first available opportunity. Good luck

@kc2, thank you for your willingness to share your experiences. If you wish to connect with others on temozolomide (Temodar), you can post to one of these related discussions:
https://connect.mayoclinic.org/search/discussions/?search=Temodar
How are you doing on the treatment so far?

@trishbindy22, despite the delay in diagnosis, your story offers hope. How old were you at time of surgery? How are you doing now?

Transsphenoidal surgery scheduled for September 19th. Thanks for all the input!