update tumor growth

[North48]

Hi Everyone,
I thought I'd update everyone who has helped me in this journey.  I have gone back to Mayo and my tumor has grown, in 2 years it has grown 2mm so my endo is recommending surgery and to see a neuro surgeon.  I am in the middle of testing all my hormones but it's looking like it's a non-functioning tumor but one that will continue to grow. I decided to wait on the surgery and to see what it looks like in 6-9 months we've agreed that it is very slow growing about 1 mm a year.  I've been feeling really good since July and I'm not sure why except that I did go on some meds for daily headaches that I was having.  I'll keep you posted but I also wanted to thank everyone of you for your help along the way.

[chantelle912]

Hi North48

Sorry to hear about your pituitary tumor that is growing again :(  Even though it is a slow growing tumor - the problem is that your tumor is growing larger and larger.  

Let me introduce myself - I am a 40 year old women living in South Africa (near Cape Town)  I was diagnosed with a 1,5cm Pituitary tumor in February 2010.  I had transphenoidal surgery through the nose to remove the tumor.  

I went for my follow up MRI in November 2010 and my tumor is back :(  For now I am also on a "wait and see" aproach.  If my tumor grows larger I will have to go for my second surgery...  

Some answers to your questions:  The surgery is called Transphenoidal Surgery (removal of pituitary tumor through the nose)  This surgery was not painfull for me and I didnt have any packing in my nose.  You will be in ICU primarily because fluid of fluid balance secondary to diabetes insipidus (DI) and this is a common complication.  I was in ICU for 4 days.  They will also monitor you for any spinal leak.  

It is great that you are feeling good.  My oncologist prescribed Neurexal (100mg) and Epleptin (300mg) for my severe headaches.  Both medications are for epilepsy patients, but are great for curing severe headaches.  I have been on this medication for 3 months now and are feeling great!!  I do get headaches - but not as often as before.

When your tumor are close to your carteroid arteries then I think you should go for the operation.  There is alot of great Neurosurgions out there.  Make sure you found one with alot of experience in removing pituitary tumors.  Dont be shy to ask him how many pituitary tumors he has removed.  This is your life in his hands and you must make sure that you have the best care.  

Friendly greatings from Chantelle :):)

[crwstar]

Hi North48, I haven't been on in a while but wanted to say I am so glad you are getting some movement with your tumor. How big is it again? Mine went from about 3mm to about 6 mm and they still keep saying there's no change or growth each time...I bet it feels nice to have some breathing room with making the decision too. You have plenty of time to now do the reserch necessary to support your next steps. Glad to hear you are feeling better too!!

Hi rumpled and horselip :-) Its been a while.
C-star

[horselip]

Another thing I can think of to ask is whether the surgeon uses MRI guided surgery.
Also, I will send you a PM as I've got some info way too long to post.
Horsey

[North48]

Thank you for the info I was going to ask you too. I need all the info that I can get out of all of you who've traveled this road.  I definitely want the best there is.

[testdeprived]

I would assume your tumor wasnt producing hormones since your labs are always normal.

[rumpled]

Even though you did not ask me - I would ask if they use packing or not, if  you have to go into ICU afterward or not, length of stay, nostril vs upper lip (nose is better they can see more, lip is old school), if they have an associated endo at the hospital, if the endo will re-test beforehand or just accept your diagnosis, how do they handle leaks (they will deny having any!!!), infection rate, how they prevent infection, if you can use saline sinus spray afterward, ... there can be a lot of stuff!!!

Look up the surgeon's license to make sure there is nothing against  his medical license - ask  him if there is (some patients are rather sue happy).

Afterward you cannot lift or bend over for a while - so prepare your home and stuff accordingly.

[North48]

Is there anything in particular to ask a surgeon besides how many have they done and what their success rate is and how they do the surgery.  

I know of someone who just died from the surgery this last fall.  It was done at a university hospital and they were watching the tumor for years and when she started to lose her sight they did the surgery and nicked the artery.  Sad story she was in her early or mid 50's.  It was my x sister in law's brothers wife.

[North48]

So true, it will be interesting when they do remove it to biopsy it and find if it was producing any of the hormones.  This dr also told me my headaches she didn't think were from the tumor but I think they are all wrong it is the tumor causing the headaches.

[testdeprived]

id get the surgery....knowing your previous posts..you wee upset mayo didnt take you seriously.

also not to be a downer but it will have to come out eventually...you may be unlucky and itll grow before you know it and be inoperable.

you can also be a guinea pig in the name of science....if your symptoms dissapear due to the removal of your ''not important'' tumor...that'll lead scientists in the right direction

[horselip]

So nice to hear from you and get an update. It sounds like you've made a good decision and you will begin the phase of interviewing surgeons. Oh joy. You are right about it being scarey! But with the right surgeon you will hardly know that they were there.
Horselip

[North48]

Thank you rumpled.  I know it's a big decision so that is why I decided to let it go for 6-9 months.  The endo said they have 3 neuro surgeon that do this surgery and they do about 150 a year she gave me a pamphlet to explain the surgery and they do it endoscopic through the nose.  My tumor is about 2mm from the artery and that is why the endo is thinking it needs to be removed and that it probably will keep growing.  The endo also said once it reaches the artery it will be inoperable.  Right now the tumor is growing mostly upward but it has a ways to go before it hits the optic nerve.

This is really scarey because knowing that it could make things worse but if I don't do it and it hits the artery and then causes other hormone issues then I'd be stuck with it and possibly blind.

[rumpled]

Just make sure you get a good surgeon - get one that is experienced. I highly recommend you get one that does endoscopic as they have a much better view.
Ask a lot of questions and don't settle - this is a big decision. Good luck with your surgery!