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Old 06-28-2009, 11:14 PM   #1
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Unhappy Crappy medical news!

Hi all!
I wans't going to post this, and have written this post about 15 times and deleted it every time. But here goes nothing...

I got some pretty crappy news a couple of days ago.

In 2003, I was diagnosed with a pituitary microadenoma (prolactinoma). This is a non-cancerous but tumerous growth on my pituitary gland which is considered "small". Your pituitary gland is probably the most important gland in your body, called the master gland of the endocrine (or hormonal) system, and it produces growth hormone, thyroid stimulating hormone, hormones that regulate your adrenal system, and hormones that regulate your reproductive system. It is about the size of a pea and sits in the middle of your head, right at the middle of your skull between your optic nerves.
And I have a darn TUMOR on mine and it produces prolactin (so it is called a prolactinoma).
I've been on meds to control this since it was diagnosed, and it was stable in size for a few years, but last week, I found out that it has INCREASED in size to 8.3 mm (a 35% increase) in the past 18 months. We don't know WHEN it started growing in the past 18 months, and fortunately I'm not having any vision issues yet and it hasn't invaded my brain tissue yet, but I think it is a matter of time. It is benign, but because of its location, it can cause serious health issues including bleeding into the brain, vision damage, vision loss, pituitary gland failure, and diabetes (a form that prevents water absorbtion by the kidneys).

Treatment? Surgery, because the meds are clearly not effective, at some time down the road when this thing grows (probably within the next 2 years). Because in 1.3 mm's time, the odds of removing it completely, without recurrance, go down to 50%. Surgical side effects? Death, bleeding into the brain and those fun side effects, blindness, pituitary failure, premature menopause, and there is often the need to replace the hormones lost as a result of collateral damage to the gland. Gamma knife is possibly an option, but since this is a cystic form (i.e. fluid filled) vs solid, the odds are that I'll need surgery in any event...

And how do they do the surgery? They do a trans-sphenoidal surgery. Which can be visualized as follows: Do you remember the movie "The Running Man" with Ahnuld? Where he goes into that abandoned warehouse, finds a kit, and takes out that huge spear thing, rams it up his nose, grabs onto his embedded tracking device, and pulls it out? Of his nose?? Well, there you have it! Only, I don't think I'll have to do this myself! And the instruments will hopefully be a bit smaller...

OK, so what's my point???

I am a weight loss turtle. It is possibly related to my tumor and to my medication, but I refuse, absolutely REFUSE to use this as an excuse or acknowledge it as a significant factor. It may have been a factor in my weight gain, but I suspect my bag of Doritos a day while sitting on the couch is more of a factor in me reaching my all-time high of 244 lbs. However, this may be why it takes an extraordinary amount of effort to average 5 lbs a month loss. Because given what I eat and what I do, mathematically I should be losing alot more, faster than what I am now. I work for every pound that I lose in a healthful way and am so GRATEFUL that I have a plan I can live with and that works (very very slowly) for me.

If I could DO something to get rid of this tumor, if there was a diet, or an exercise, or SOMETHING I could do to cure myself, I would. I would be all over it. But I can't.

There are those of you out there who have obesity-related conditions including diabetes type II, high blood pressure, sleep apnea, knee/back arthritis, gout, insulin resistance syndrome, and other diseases that can be HELPED with weight loss including PCOS, Insulin Resistance, Fibromyalgia, Chronic Fatigue Syndrome. And I must confess that posts that refer to these types of conditions as a reason or a significant factor for not being able to lose the weight drive me, well, bananas.

You have the GIFT of changing your medical future. You can actually do SOMETHING to get well and stay well. I wish I had that gift. But I don't. And that sucks. But I won't use this as an EXCUSE not to change. I will get as healthy as I can, and let G-d take care of the rest. And those of you with the opportunity to heal yourselfs should really think long and hard about what you want to do, with your health, your life, your future because it isn't too late to act. Thank G-d you guys can heal yourselves. No excuses, no rationalizations, no exploration of genetic problems, no grab-bag of conditions related to your obesity that make life hard. Because it really DOES come down to calories in vs calories out. And at least you have the ability to actually cure yourselves...

OK, off my soapbox!

Thanks for listening...



Kira (aka "The Running Gal")

Last edited by kiramira : 06-28-2009 at 11:18 PM.
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Old 06-28-2009, 11:18 PM   #2
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I'm so sorry Kira. I am glad that dispite this bad news you are refusing to give up with your weight loss efforts, that shows me that you are a fighter. You're in my thoughts, keep us updated.
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Old 06-28-2009, 11:20 PM   #3
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Kira, I'm so sorry to hear that. That sounds just awful and kudos to you for being so committed and being on track with such a serious challenge looming over you.

Maybe I didn't understand clearly, but are you planning to go in for a surgery to get this removed?
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Old 06-28-2009, 11:23 PM   #4
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Nope, not fair! I wish you the best whatever you and your doctors decide on
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Old 06-28-2009, 11:36 PM   #5
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sorry for the news....do what the docs tell you to. Keep us updated please!
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Old 06-28-2009, 11:38 PM   #6
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Kira
I always enjoy your posts.Sorry to hear about your medical situation.It is amazing how quickly medicine advances and hopefully by the time you have to have a surgical intervention, the risks will be less.Considering you are dealing with a medical issue that hinders weight loss, you are truly amazing.Hugs.
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Old 06-29-2009, 12:32 AM   #7
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My heart goes out to you and your message is well-heeded. Take care and keep us posted
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Old 06-29-2009, 12:36 AM   #8
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You are in my prayers Kira!
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Old 06-29-2009, 12:58 AM   #9
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I am really sorry you are currently going through this.

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And those of you with the opportunity to heal yourselfs should really think long and hard about what you want to do, with your health, your life, your future because it isn't too late to act.
Thank you for the reminder of the blessings that we have.
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Old 06-29-2009, 01:04 AM   #10
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I am so so so sorry you have to go through this. I agree with EVERY SINGLE SENTENCE of your post. You are a wise wise woman. Sending you gentle coping hugs.
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Old 06-29-2009, 01:29 AM   #11
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Kira, I am so sorry to hear this.
Sending you a heartfelt hug. I wish I could do more.
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Old 06-29-2009, 03:28 AM   #12
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I'm really sorry to hear your news, kira, and I really admire your attitude. I hope the docs can get it sorted for you very soon.
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Old 06-29-2009, 05:12 AM   #13
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This does indeed suck. But, as person currently on her second time round with a pituary tumour (first from 2003 - 2007, second diagnosed last week), it might not be as bleak as you think. It's actually quite rare in women for the tumour to cause visual problems, and these are usually temporary / treatable. In men, the visual symptons are often the first sign, so their tumours tend to be bigger when they're diagnosed, and yet they are usually treatable. The tumour is not in your brain, and so I really don't think it can invade your brain tissue. Like you said, this isn't some sort of spreading cancerous growth than can 'infect' healthy cells. Yes, the surgery can cause problems, and the chances of success are not as great as one would like, but if you opt for surgery, insisting (and i mean *insisting*) on an experienced surgeon will probably increase your chances. I don't know how it works in the US, but here in the UK you can ask how many ops the surgeon has done and what his / her success rate is. But, before surgery, there are other meds you can try that might be more effective (I switched from cabergoline to bromocriptine after a year with no progress, which eventually did the trick). And, once you find a drug that helps, your weight may well start to return to normal, especially with all the healthy eating you're doing! A study for the Pituatury Foundation found that 70% of women put on weight with a prolactinoma, but that most found they lost it when they began treatment. So, I think it's more than a possibility that your weight gain is related to the prolactinoma! Acknowledging this doesn't mean using it as an excuse, it's just a medical fact, like that taking steroids tends to make you put on weight. And it does mean that surgery isn't all bad news: if it does work, you'll find it much easier to lose weight. I too am contemplating surgery - I'm not sure I can go through another four years - but even though it sounds grim (the whole 'sharp thing up nose' idea) it's actually a a much less risky type of operation that anything that involves cutting you open. I'm actually glad it's located somewhere that they can get to without making holes in my head!

Obviously, you may have been told different things by your doctor, but you should remember that lots of medical conditions have possible side-effects that never become actual for the majority of patients. They have to tell you, but that doesn't mean you have even a significant chance of developing them. And even though the growth is obviously worrying, it might just be a case of switching drugs to one that works for you.
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Old 06-29-2009, 08:32 AM   #14
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Oh Kira sweetie, I am so sorry that you are going through this. I know that you and your doctors will come to the right decision for you. You attitude, as always is admirable. Please keep us updated. Sending good wishes and thoughts your way.
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Old 06-29-2009, 09:32 AM   #15
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Kira, So sorry to hear about your bad news. Your dedication to persevere under these difficult conditions is very inspiring.
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