Upcoming Surgery

Posted , 7 users are following.

Hi,

I'm trying to find some info and advice for people who may have been in similar position.

In November of 2018, it was found out that the space that held my gland was enlarged. This led to a MRI which revealed I had a tumor on my gland. After doing 2 rounds of testing with 2 different doctors, I have come out with the diagnosis that my tumor is a secreting tumor with both the cortisol level and the growth hormone. However, it is massive in size at 1.6cm prompting my endo to tell me that I will be having surgery, no matter the hormones , due to the fact it is affecting my vision and causing increased intracranial pressure. So now, I get to face the upcoming surgery date unknown at this present moment with the risk that my gland will be removed due to where the tumor is coming out from (it is sitting in the folds of the front and rear).

A lot of stress for a 26 year old to take in.

So I was just wondering how many people have had surgery to remove a tumor, how big their tumor was, some of the after affects it caused, and if they had the gland removed in full and how the reacted to the medication. My biggest fear is the cortisol due to the fact that I know your body increases it when you are sick and here recently that's all I've been is sick.

Thanks,

K

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  • Posted

    My tumor is not affecting my cortisol levels but it was pressing on my optic nerves causing me to have vision problems. However, almost immediately after i was put kn Cabergoline by my Endoconologist I stopped having vision problems. I have had my tumor on my pitituary gland for about 5 years now. I had transphenodial surgery (they go up through your nose to remove the tumor) 2 years ago. The Dr. thought he got it all as my prolactin levels went down to 25 while I was in the hospital but after an MRI and bloodwork a few months later proved that the part on the stalk of my pitituary gland was still left. So now I am still on Cabergoline and I go back in May to see what we will do next. It is scary but I always think that atleast they can keep it under control and it is not affecting my daily life too much.

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  • Posted

    Hi K

    Sorry to see that you're experiencing this.

    I had a large pituitary Macroadenoma at 4cm x3 x2 or there abouts. It had stretched my optic chiasm up into the air distorting my vision and causing terrible intercranial headaches of which painkillers could not cure. The tumour was non functioning.

    I had transphedonoid surgery via the nose to remove it in 2016. The tumour was large enough to damage the fossa area and it had started to grow into the sphenoid sinus area.

    Since surgery they managed to save the gland but my cortisol production has been affected so I'm on hydrocortisone tablets for life. The positive is that I was on 20mg spread over 6am/noon/5pm but over time it has been decreased to 10mg only at 6am. It seems that my poor little gland fought back and started to work well once again. All credit to the fabulous EnT & Neuro surgeons who operated together.

    The other hormone which is no longer produced is Growth hormone. Usually this can be treated but I was subsequently diagnosed with Neuroendocrine Cancer aka Nets. Having Growth hormone replacement injections would cause the cancer to grow.

    Three years on I still need to flush my nostrils to remove buildup at least once a day but I've got used to it.

    Best wishes with your surgery.

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  • Posted

    Hi there. I had a 3cm macro-adenoma (tumour) removed in May 2013. In my case my tumour was non-secreting and now I don't make any cortisol or testosterone, so I have to take Hydrocortisone tablets daily and a 12 week injection for the testosterone. The tumour was also affecting my vision so it had to go.

    Every pituitary case is different, I had my surgery done in Southampton and the surgeon was brilliant. He managed to remove most of the tumour and regular MRI scans have shown no regrowth so far. My vision returned to normal very quickly and is back to how it was. Again I have regular field tests to make sure, vision problems are an early warning sign of tumour regrowth.

    The surgery was ok, it was my first surgery, assuming you are in the UK, then the surgery will be done via your nose. It does knock your nose and sinuses around a bit and they take a while to recover. I was in hospital 5 days in all. it took me about 9 months to fully get over the experience, in my case my body had been living with insufficient hormones for a while so needed to recover. I'm not sure what you will experience where you are producing too many hormones, possibly some other tablets tontake if the hormone levels don't return to normal once the tumour has gone?

    The summary is, it is a bit scary, but the surgeons know what they are doing. You'll be fine, but it may take a while to get the hormone levels right.

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  • Posted

    Hi,

    I have just seen your post and wanted to offer you some reassurance.I know it a can be very scary when first diagnosed .

    I have surgery at Kings in 2006- I think most of my pituitary gland was removed and afterwards was incredibly thirsty until things re adjusted- I had excess growth hormone-but 13 years on am fine-I think you just have to go with what the medics say and follow their advice.I hope all goes well for you

    Best

    Kate

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  • Posted

    I had transphenoidal surgery to remove my tumor from my pituitary in 1996. Dr. Rob Parrish, with Methodist Hospital in Houston is awesome. He was able to remove the tumor and small area of pituitary to be sure to get it all. Sending good thoughts and prayers your way for a successful surgery and quick healing.

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  • Posted

    Hi!

    Thank you all for your messages and input.

    I did my last round of testing today to look at my cortisol levels, my thyroid hormones, and my dht to help rule out a PCOS diagnosis when I was a kid. The referral went in and now just waiting to hear from the neurosurgeon to set up the first appointment.

    I am grateful for all the positive that came from asking this question. You have given me some insight into the differences that this type of tumor will do. My endo is prepared for either way that it goes and is definitely a great asset to my continued care.

    Thank you,

    K

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  • Posted

    Just one thing to add to what has already been said. I had a biggie too (30mm), notsecreting even what it was supposed to do, let alone any extra. Before the op, I won't say terrified but certainly anxious. After the op, like a few hours - "was that it?" No pain whatever, eyesight recovered after about 3 months so allowed to drive again. Never had any need to irrigate my nose.

    So relax already! 😃

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    • Posted

      I forgot to say... I found the Pituitary Institute has really useful fact-sheets available online for free. I joined to support their work.

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