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OMG! I have a brain tumor

I wish I was joking, but unfortunately I'm not. I went in for my annual physical (a couple years late) and while I was there I mentioned that my menstrual cycle had suddenly shifted from 45 days to 90 days pretty much overnight nearly 2 years ago. I'm only 38 but was wondering if there was any chance I might be in some early stage of menopause. So my doc said she would run some extra blood tests.

First the nurse calls me back and says everything looks normal, I think great but that still doesn't explain my change in cycle (Mind you I wasn't complaining) Then a couple days later my doc calls me and drops the bombshell and tells me she thinks I may have a tumor in my pituitary gland and to come in for an MRI to make sure. She said not to worry they are almost always non-cancerous and that I should be able to treat it with drug therapy.

Well, I had the MRI on Friday and I finally get through to my doctor today on the phone. Turns out she hadn't seen my test results yet as they were physically sitting on her desk rather than in her computer. (What a novel concept!) So she looked at them while talking to me and confirmed that not only do I have a tumor but it has grown large enough that it is now pressing on my left optical nerve and is no longer a candidate for drug therapy. UHGGHH!!!

I'm still not terribly worried but I wasn't thrilled when she said she was going to get me scheduled with a neurosurgeon as quickly as possible and call me back later today to tell me the when/where's.

Not sure why I'm posting this. I'm really not trying to play a pity party I just wanted to vent my frustrations.

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  • I'm so glad your DH was so proactive in the situation!!! Seeing a Dr. next week is definitely preferable. That is what I am preaching at my DD-----get on it! Do it yourself!!! I hope she does as

  • TheGh0st
    TheGh0st

    Yes I have to say this is one of those time that the "d" in DH actually stands for Darling :cool2:

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  • Author

Overall he's a good guy. But he had lost a lot of brownie points on this issue when he decided to start up an old argument over whether or not he thought I was "Saved" the night before the appointment.

Definitely pushed my buttons with that one. Then he had the audacity to ask if we were going to "Cuddle" later that night. I was like

Hmm.. let me think about it for a moment. Nope, don't think so dear. I'm afraid questioning whether or not I'm going to hell just before asking for some action has to beat the old "Honey, are you awake?" line hands down for worst pre-foreplay conversation. As far as I was concerned he was lucky he wasn't sleeping on the couch.

You're last post just cracked me up. Poor DH, he doesn't know if he's up or down, does he? Aren't they all just like that though? One minute you're so happy to have him and the next you want to just shoot him between the eyes and end your misery! :)

I'm with you on getting things taken care of sooner than later with the tumor though. I can't see waiting for MORE complications before dealing with it. That line of action has NEVER made any sense to me!

Another "can't believe I didn't see this before" either. You are totally in my thoughts and you have all the best wishes I've got. Take care and stay pro-active. You're the one with your best interest in mind.

Poor DH, give him a break now and then if you can and he doesn't shoot his mouth off too bad again! :wink2:

  • 2 weeks later...
Diane, just wondering if you have any updates? I thought about you the other day and was wondering if you had any new updates.

Diane - I too have been looking for update on your situation??

Hmmm maybe she is too busy burying her hubby in the back yard!! Hope all is going well for you Dianne

  • Author
Hmmm maybe she is too busy burying her hubby in the back yard!! Hope all is going well for you Dianne

Sadly our backyard is completely covered in concrete. (Very small area, previous owner paved and put in basketball hoop)

Sorry all, things have been pretty hectic around here, I haven't had much time online with everything going on at home and work. I also didn't have any new information until just this Thursday. My appointment with the Neurosurgeon was just over 3 weeks ago now. When I left the appointment they wanted me to see a special Neuro-opthamologist and a Endocronologist that specializes in Pituitary Disorders. I was told the Neurosurgeon's nurse was going to set the opthomologist's appointment but that the endocronologists would call me with an appointment time. They said I wasn't able to call directly to make the appointments myself but that they would put it in as a rush. Even at a rush they said it would take nearly a week before I'd hear from the endocronologist. Well...I waited and waited but no word. Finally after calling the neurosurgeon's nurse 3 time in 3 weeks, they were able to get me an appointment. I guess they had made an error when they first put in the referral request and didn't mark it rush so the endocronologist's office had it in a pile of patients they were planning on getting in sometime in the next 3 months instead of rush. Even now my appointment isn't until June 19th.

But to be honest. Unless some new information comes to light I am really wanting to postpone any surgery until next year for several reasons. Mainly because I really want to get my breast reduction surgery done for both asthetic reasons as well as the back problems it causes. I was also told by several nurses that my lung function should improve substantially after the reduction surgery. Which could help with the recovery from the brain surgery. Every past surgery I've had there have always been minor complications afterwards with my blood oxygen levels. I know it sounds like a bit of an excuse to go with the plastics but the "girls" annoy me much more than this tumor at the moment. The only thing this tumor is doing to me right now is causing my TOM to be every 90 days, what a hardship (She says eyes rolling!)

The other benefit to waiting until next year for the surgery would be to give me more time to research and make sure I'm really comfortable with this neurosurgeon performing the operation. She's does this surgery a couple times a week but has only been doing it for 3 years so it wouldn't hurt for her to get another year of experience under her belt.

Sorry if I've rambled, I hope this post makes sense. But, I don't have time to review and edit what I've written and I wanted to give you all an update.

Diane,

Sounds like you're in a good place right now.

Don't worry about how it sounds in regards to your PS. It sounds more health related than anything else anyway. And especially if it will, in the end, help with your brain surgery recovery. What ever you can do to help with future recovery is a huge plus.

My mom had bypass about 4 (5?) years ago and after being heavy her entire life, had huge amounts of skin. She started with a face lift, then went on to the torso and has now finished with a breast repositioning. Hers had drooped so far they basically had to completely re-do them. She has nice little perky boobs for the first time in her life and is thrilled (no implants). My point to all of this is that she had to get her head around "Plastic Surgery" even though all of these surgeries were taking care of problem areas that were affecting either/and her health, her daily functioning, how she "looked" at herself, etc. Don't worry about how this all "looks" to any one else. This is your life and how you live it is up to you. If you feel you should wait til next year for brain surgery then by God, wait til next year. It sounds like, from your earlier posts, that your doctors were recommending that as a viable option anyway.

Take care of yourself and best of luck at your next appointment. Thank you for updating us, I've been wondering how you are and what was happening. Again, take care.

Michelle

Di

Good to hear from you and sounds like this isn't a medical emergency that you have to take care of yesterday which I am glad to hear ...

Thanks for the update..

Janet

Diane, glad to hear from you. Glad to hear things aren't any worse and it seems like there's no rush, so that's good. Take the time and make the best decision for yourself. Good luck with the breast reduction too!

  • 3 weeks later...
  • Author

Follow Up: The endocronologist wants me to try a drug therapy for 4 months that might shrink the tumor without surgery. He only gives it a 50/50 chance of working but it should give me enough time to try to get a breast reduction before I have to worry about possible brain surgery. I know I know it sounds so vain, but really the back pains and clothing issues are annoying me so much more than a few missed periods and a little breast milk.

If the meds do work I'll have to take them twice a week for a minimum of 2 years before I can get off them and it seems many patients complain of nasea with them. Its also in the same family of drugs as phen phen was but there is no proof of it helping aid in weight loss or increasing heart problems but there are no guarantees either.

Diane, I hope the drug therapy works. That beats having to have it removed with surgery. Sounds like you are doing so well. Thanks for the update and I will continue to pray for you. Good luck with the breast reduction too!

  • Author

Ive been prescribed cabergoline (Dostinex) it is in the same family as Bromcriptine (so I've been told) but has a bit lower risk of side effects such as nasea and headaches. Still, there appears to be a 25% chance of both of those side effects from what I've read online.

Has your husband had any problems with any side effects? And was his tumor a prolactinoma or a non-functioning stalk effect tumor? Everything I'm reading online seems to suggest the medication is for those with prolactinoma's but my docs all agree that I have the non-functioning stalk effect tumor so I'm not too clear on why they are trying the drungs. Don't get me wrong if it means I can safely postpone the surgery I'm all for it but I am doubting the chances of it working on my particular tumor.

Thank you so much for sharing.

he has a prolatinoma, he only has side effects when he does not take his meds and that is bad headaches. If I understand what you wrote above is said you are missing periods and are producing small amounts of milk??? when my husband was off his meds for 2 years (no insurance for his meds at the time) he started producing milk, from what I have read and seen on health shows, that is very common to prolactinomas. but I don't know anything about non-functioning stalk effect tumor.

I will have to research it, educate myself, I love educating myself about different things

and you are welcome I hope all is going good for you

  • Author

the stalk effect tumors aren't actually producing hormones instead they press on the "stalk" between the pituitary and the hypothalamus (sp?) which blocks the signals between the two telling the pituitary when to shut off production of things like prolactin.

One reason they think this isn't a true prolactinoma is that my prolactin is only at 40 which is barely elevated compared to normal prolactinomas which can cause prolactin levels to be up in 100's and higher.

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