I was diagnosed with a meningioma, a type of primary brain tumor. My diagnosis was 6 years before my endo diagnosis, but I had endo at that time too. Interestingly, those of us with endo. are at higher risk of developing meningioma's later in life. Meningioma's are most common in people between the age of 40-60, my symptoms of the brain tumor started at 19 and was finally properly diagnosed at 23.

I also have benign tumors on my liver called biliary hamartoma's (though they might also be cysts, the lesions were too small to be completely characterized). But from what I understand hamartoma's are congenital.

I am not sure if there is a connection between pituitary tumors and endo, but you never know.

What do they plan on doing for your tumor? Are they going to remove the pituitary gland?

Certain endo drugs can affect the pituitary gland. So I guess in indirect way you can say there's a connection? I never really saw anything written about it. But the warnings are usually in the pamphlets given with the medication, or on the FDA's website.

For example, the PDR website for Luporn mentions benign pituitary adenomas. Here's the link:

http://www.pdr.net/full-prescribing-information/lupron-depot-75-mg?druglabelid=15

I took an AI (aromatase inhibitor) and ended up getting uterine polyps from it. I had to have the polyps removed and biopsied because the AI I took has a reputation of causing multiple cancers, including uterine cancer. Thankfully mine came back benign.

I'm sorry you're going through this.

Thanks for the replies. At this point I'm not a candidate for surgery for my tumor because it is too small. So my only option at this point is to be treated biochemically.
I'm sorry Vallywill for your diagnosis. About 6 months after my diagnosis of Acromegaly my twin sister was diagnosed with an oligo/astrocytoma (grade 3 tumor). How are you doing? Needless to say between her and I, I'm always questioning why and looking for ways to make things better.
Poisoned- I've never taken any drugs to treat endo. Only did the surgery and I'm on low dose birth control. Prior though, I was on depo provera (mistake). Now I'm afraid of most drugs.
The reason I posed this question is because I started having endo symptoms on my ovary again (same spot where it was originally) and my acromegaly symptoms have been flairing up quite badly. Saw this article and now I wonder if they are connected? If I remove my ovary will my acromegaly symptoms subsided? Thanks for listening to me rant :)

Sending hugs....Cancer sucks and I hope that your treatment goes smoothly and you can go into remission asap! So scary.

I'm not sure as far as my cancer goes. Looking back I had my first period when I was 10 y/o. Then I remember when I was about 12 they got really bad, extremely painful, heavy bleeding always had to miss school, life etc. So I'm pretty sure that I had developed endo way back then. Finally when I was 14 or 15 my mom took me to the doctor to get me on birth control to eliviate my painful heavy periods and it worked. I was on bc till I was 23 or 24. Then I just decided that I didn't want the expense anymore and went off them.

My periods as far as I remember were still normal and not painful, but when I was 26 I developed aggressive stage 3b breast cancer. They said my breast cancer was not hormone related, but I'm wondering if it had something to do with endo and the birth control as I was on it for so many years and my hormones were regulated and then all of a sudden I develop my cancer when I'm no longer on them.

I went into chemopause (menopause) during treatments and about 6-9 months after I finishes they returned and about 2-3 years later I started to develop endo symptoms, painful ovulations, fibroids, but at the time I didn't know that it was related to endo.

I found out about the endo in 2012 when I had surgery to remove a fibroid that was growing at an unusual rate. They were concerned given my cancer history that this could be malicious. When my doc removed the fibroid he said it was covered in endo, like endo on top of endo, this fibroid was acting as a magnet for my endo. He said that there were a few other spots the endo went, but it was 90% on this fibroid. But unfortunately now that the fibroid magnet went away my endo has spread every where. ugh.

So again I'm not sure the answer to your ? I know that with my breast cancer they said that I have a 50/50 chance of developing another form of female cancer below the belt such as cervical, uterine, ovarian etc. and now wondering if the opposite is true. Like if I had a below the belt female cancer if I would still have a 50/50 change of developing breast cancer.

But like I said looking back when I first got my periods and that I most likely had endo and never knew it, and then deciding to go off my bc pills I do often wonder if that would have played a part in me getting my breast cancer. I have thought of the what ifs, like if I had just decided to stay on the bc pills, if I would have developed my cancer anyway or if I would be in this endo situation that I am now.

I know that cancer reacts well to inflammation in the body and endo is an inflammation. perhaps the cancer could feed off the bad endo mojo?

Sorry for the long winded response. :)

Hello,
Thank you for asking how I am doing. It has been 7 years since my diagnois, and for the most part I am good! I have nerve damage from surgery, which causes an issue with my eye, but other than that. Luckily, most meningioma's are benign because I was misdiagnosed for 4 years, but in the brain tumor community we don't really you the word benign, there is nothing benign about a tumor growing in a space cannot expand (which I am sure you can relate to). When it was originally found I was told it was inoperable because part of it was abutting my brain stem. But I was lucky to be sent to a fantastic neurosurgeon, and he removed it during an 8.5 hr surgery. Actually Friday I have my yearly MRI, I will have one every year likely for the rest of my life (from what I am told) b/c M's have a habit of re-growing even years later. Also, with my using progesterone to help control my endo, it could cause tumor regrowth, but I am hopeful it will be fine.

It is pretty crazy that you and your twin have tumors. It really makes you think about how genetics, hormones, and environment play a role in all these medical issues some of us go through. What are they doing to control your tumor and acromegaly? It must be so hard for you to deal with. If you don't mind me asking, what kind of symptoms did you have at first? I know sometimes these types of tumors can be hard to diagnose.

BTW, I just noticed you posted an article with your original post. I will read it after post this.

That is precisely why I decided to have a complete hysterectomy with removal of ovaries because I had researched and doctors agreed it would lower my risk of developing breast cancer in the future because it runs heavily on both sides of my family. Although it is unclear how much it reduces the risk and of course HRT use post hyster has to be minimal to none. So i figured i would just go for the gusto and try to stop my endo from progressing, remove all implants and sources of growth and cancer and reduce chance of breast cancer at the same time. We will see. I already recieve annual mammogram.
Good topic. Thanks for sharing your stories.

Vallywill- As of right now my tumor is inoperable. I'm currently on cabergoline 2x a week and monthly injections of sandostatin. I started having pain on my left ovary that was dull and achy all the time. Then at other times it would be sharp and stabbing. Along with lower ab bloating. That was the endo. Had surgery, but was having weird other symptoms. For the acromegaly I had pain in my leg from growing and in a matter of months (crazy how fast it happened) went from 110 pounds to 155. Always was small, muscular, boyish figure. Then all of a sudden was puffy everywhere (including hands and feet) with fibrocystic breasts that lactate (never have had a baby). Honestly the only thing that really got the doctors attention was the lactating and lack of periods. Other symptoms were and are a strange smell when I'm symptomatic ( others can smell it), disturbed sleep, neuropathy, high bp, blurred vision, headaches, After three doctors and many tests, figured out what was wrong. Acromegaly caused by a mixed tumor that secretes both GH and prolactin. If it wasn't for the prolactin part I don't believe they would of figured it out. The meds have helped considerably, but I'll never be cured and I'll always be symptomatic. Some days I just feel horrible and worry about my future.
My twin sister on the other hand, only discovered her brain cancer 6 months later when she gave birth to her first baby, had a grand mal seizure and found the tumor. Life can change so quickly....
Vansanturtle- I applaud and commend you being proactive. I totally understand. I again now am having pain on my left ovary from endo and want my ovary removed considering my and my sisters history. Plus my acromegaly symptoms have been much worse as of late and I associate the two either rightly or wrong. I just need to convince the doctor to do it. She wants me to go for pain management. I'm beyond frustrated.

Thanks for listening everyone. I appreciate it