As far as pituitary tumors go, sadly this is on the larger side hence the *macro* adenoma call by the radiologist. I am only a layman (aka not a doc) so my read is not perfect but a guess - it says the tumor has grown up around the stalk (the stalk cannot be seen in the images) and the cavernous sinus is clear which is good.
I however cannot really tell if the tumor is near your optic chasm or if it is wrapped around the carotid - it does seem by what the report says the thing has pretty much filled the pituitary fossa which can be good in making it much easier to remove.
Treatments can vary based on type of tumor - has your husband done any blood, urine and/or saliva testing to determine the type of tumor? Some tumors can respond quite well to medications and the tumor can reduce in size with the medications and not require surgery or lower the risks in surgery.
Surgery may be the only option for certain types of tumors and if the tumor does not respond to medications (if that is an option). They should go through the nose and you should find a surgeon who is very very very very very skilled - as in has done more than 500 surgeries lifetime and more than 50 this year and has done quite a few of the macro tumors as they are more difficult and can have more potential for complications. Surgical skill is THE biggest factor in outcome of the patient - of course sometimes the anatomy of the tumor can work against him/her but you want the best to do it so don't mess around do all you can to get the #1 surgeon.
In the event that some of the tumor is left behind which is common in larger tumors where a surgeon cannot and should not get too close to say the carotids or the optic nerve, radiation is common. I would research the types and get the best type and not take what they have but what is best as the pituitary tumor is deep and some types do impact all tissues on the way in.
Please keep us posted on his health, type of tumor and let us know if you have more questions. There are resources in the health pages that may help. I also suggest you get copies of everything from MRIs to labs.
Hi, thank u so much for your comment. No tests have yet been done only mri scan. Awaiting to see neuro by next week. Tks, Shenaaz.
I would not see a "neuro" for this - please seek out a neuro-endo at a pituitary center for the proper course of treatment. A neurologist is not properly trained to treat pituitary and may not suggest the proper routes.
This requires specialized treatments - try a university or larger hospital. A regular endo may *say* they treat pituitary, but they may or may not do it well - so you really need a pituitary center so that your husband gets the proper testing (testing needs to be at the proper time, lab error is a huge factor! it kept me from being diagnosed for years!) and monitoring after removal as these beasts can come back as well as he will almost surely need one or more hormone replacements for life, living and quality of life - this is not something to play with.
OK thank you for your advice. The s-prolactin results were 19.7 ng/ml.
Without a range (every lab in every country differs) it makes it hard to tell! If that is elevated and that turns out to be the tumor, medications should be tried first as medications can (but not always) work on prolactinomas. There are two options (but may be three depending on your country that I know about).
They may want to debulk the tumor - but meds can work before surgery to reduce the size of the tumor as well. I would make sure that they do ALL the hormones as while prolactin can be elevated (or low), it can be the pressure of the tumor aka mass effect and not really the tumor. So it is important to get a really really good endo as well as the #1 surgeon around.
Thank you so much for further advice. Numerous blood tests were done today. Hoping to get results tmrw. Unfortunately in the Republic of South Africa, there is no Pituatary Centre, but I am trying to get an appointment at a good endocronologist. I dont know if we have a neuro-endoc in this Country. Will keep you informed. Thanks.
The numerous blood tests. What is a good time of the day to do the tests.
My doc has me do mine 8am fasting - fasting for 8 to 12 hours. Some tests though may need to be at different times.
I found a center - I will PM it to you.
Thanks so much, really appreciate it. Await to hear from you.
Thank you so much for info. contacted someone at PICOMSA. Awaiting to hear from them. All blood tests are normal except of Testo reading 108 and the reference is 180 - 739 which is low. Now I am more confused. What type of tumour is this. Does not look like Prolactin?
Some tumors cause high readings - that means the tumor itself is secreting. When the hormone is low, the tumor can be impeding the hormonal secretion either by pressure or another hormone interfering - often those with Cushing's (elevated cortisol) have low testosterone. That is why it is important to get lots of hormones tested and the entire loop. Hormones work this way - the hypothalamus signals the pituitary, the pituitary signals the gland and then the gland secretes and signals back completing the loop. Hypothalamus issues are rare so it helps to test the pituitary to gland loop to see what is the real cause of the issue. Multiple hormones can be involved - like in prolactin type tumors, androgens (estrogen, testorones LH FSH dhea sulfate sex binding hormone) should all be tested. Keep in mind that there are many forms of testosterone as well so make sure they do bio-available so it captures all the types - so it pays to know the tests (in some cases better than the docs) so you get tested effectively.
It is very confusing. I hope you find a good doctor - just make sure you get copies of everything.
Thank you so much for your advice. Just consulted with neurosurgeon who suggested surgery is the first line of treatment for a non-functioning pituitary adenoma. We now go back to SKILLS. Its getting more complicated than I thought.
Alas, the larger lesions tend to be non-secreting ones and can be more aggressive. So yes, you do have to look for skill.
I was without power for 8 days - hence the delay. Sandy knocked out the power and did a LOT of damage in our area.
thank u so much. Sorry to hear about your power and hope everything is OK after hurricane. We have now been to a Endo who requested numerous blood tests at the correct times (8 to 12 hours) fasting and done first thing in the morning at 8 am. Results came through. Everything look Ok only Thyroid Antibodies being Anti - TG Antibody is 3 times higher than normal. The Anti - TP ANTIBODY - normal. It looks like it no longer a non secrettory pituitary adenoma. Geeting more confused.
It is possible to have concurrent issues - for instance, I had Hashimoto's thyroiditis (which is antibodies), PCOS and a prolactinoma AND Cushing's (as well as other stuff) all at the same time - so having thyroid antibodies off can really mean the thyroid is off as that is a thyroid test. TSH is a pituitary test and if you told me that was super high well that can be a rare TSH secreting tumor - but I have not heard of (but then again I am not a doc) of a specific pit tumor that makes thyroid antibodies go nuts.
So, he could have a concurrent thyroid issue - it does happen. Both will have to be treated - IMHO pituitary first given the size... and after pituitary surgery most people need thyroid replacement anyway.
It is confusing. Keep us posted. We are having a snow storm now so if the power goes again - it may be another delay.
Hi, hope your hurricance is now over and all is well. My husband has seen a endo and after numerous blood tests, it has now been confirmed that he has a non functioning pituitary macroadenoma. Surgery is the first line of treatment. My husband's tumor is 22mm. Is this a big tumor for the neuro surgeon to remove in one piece? Very worried.
It won't be removed in one piece... even my smaller 5-6mm tumor was removed in pieces. They go in with round curettes and scrape it off the pituitary - all while avoiding the carotids and optic chasm. There are some doctors that are now perfecting the technique to remove whole - in other words, tease it off and then pull it off in one piece (there are some papers on outcome of whole removal vs pieces) so you can look at surgeons that do that. They are looking at that in terms of recurrence rates.
Part of the tumor is in an area where it is considered inoperable - it is full of blood vessels and nerves. He will likely require radiation on that part so the tumor just does not come right back.
As long as he is in the hands of a truly competent surgeon - the doc should be able to debulk a lot of the tumor, then radiation will have to take care of the rest of it. Again, research type of radiation and go for what is best, not always for what the hospital has.
Thank you. Will let you know. We managed to get hold of a professor who is the head of neuro in a academic hospital and also teaches at the university. Hope he does a good job. Thanks once again for all your advice.
Don't hope - ask questions.
If not, travel.
I don't like to say this - but I have met people blinded by bad surgeons - others that the doc was inexperienced and just removed the entire pituitary (it was easier, I guess?) rendering the person panhypopit immediately - both causing radical changes to their life in hours.
So ask about how many surgeries they have done and experience with macro-adenomas. Ask about the risk to his optic nerve and how the anatomy of the tumor will increase the risk of the surgery and what he does to mitigate risk. The size does increase the risk - so skill is at play here. Ask about how the surgery is done and ask the doctor to show you the tumor on the MRI and explain things to YOUR satisfaction in your language so you are comfortable. Will he be in ICU for a day after surgery or straight into a regular room? Ask about CSF leaks, and post op infections as well - they are minor complications - but can happen. Also ask about contact after surgery.
I hope you have a good endo as well to manage the post op testing and medications. He will need a lot at first. It will then taper to regular monitoring. I felt like a pincushion for a while.
All this can be so frightening. We are seeing the neuro tmrw. Yes I do have a good endo. Thank you for all your advice. It has been really helpful. Regards and keep well.
Consulted with neuro surgeon who informed me that he has done hundreds of these ops. He has got a very high success rate in debulking the tumor. In my husband's case as the tumor is 22mm and depending where the tumor is, he informed us he will remove at least 90%.
That is wonderful. Keep us posted on progress and I hope your husband has a great outcome!
Hi there. When we saw the neuro prior to surgery, he informed us that he was also concerned that there was some asymmetry between the right and left cavernous sinuses with the left cavernous sinus being larger than the right. He can only advise when he goes in to remove the pituitary tumor. What do you think.
I can only tell you that imaging only goes so far. So when the surgeon goes in there, things will be clearer - hence my point about you want lots of skill behind those hands.
The surgeon will not be operating in the cavernous sinus though - that area is inoperable. But the surgeon should be able to tell more about how the tumor is situated and what it is pushing on, growing in what location, firmness or gooeyness of tumor (those are medical terms... ok not) etc.
Anything in the cavernous sinus needs radiation.