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Hi I'm still a newbie. Hi I'm still a newbie.

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Unread 07-03-2002, 07:03 AM
Hi I'm still a newbie.

I posted twice in the pre-op's and they suggested I come visit you gals.
I found out, thru no help of my doctor, last week I have a huge cepeated ysts 7.3cm on my enlarged right ovary, and a large uterus with a pretty thick endo of 16cm. My ca 125 test came back 62. My new gyno is refering me to a gyno-oncologist. They called me right away and I see them on Friday.
I have other concerns besides this.
I had been complaining to my gyno for years about pain in my left breast and more recently paain in my right. When I took my files from his offie I found the mamo report from three years ago telling of nodes in each breast, the left being questionable, to follow up... he never told me about it. Just kept saying there was nothing there.
I also have a really bad colon, its been a problem most of my life but could never find a doctor interested in doing anything to help me with it. I finnally got it under control but I always have bad gas.
I've been reading lots of posts here and its been a lot of help. If any of you can offer any advice I'm listening!
I have a 12 yr old daughter with HF autism who underwent brain surgery almost two years ago for a chiari malformation (which can be deadly) and a hubby with two major illnesses of his own. They are both doing OK now.
I've been kinda focused on them for a long time.
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Unread 07-03-2002, 07:52 AM
Hi I'm still a newbie.

Well, I just had to reply because I LOVE your username -- it sounds neat and made me smile!

You certainly have a lot on your plate right now -- it can be tough to take care of ourselves when our family members have issues, but you are important too, so I'm glad you are gettting help with some of the things going on for you.

I think you are doing the best thing for yourself by seeing a gyn/oncologist -- they are experts and will be your best bet for excellent treatment and care. Write down a list of questions/concerns so you don't forget while you're there, and if possible, have DH or a friend go along and take notes for you. My DH wrote down a lot of what my oncologist told us -- my head was going a hundred different directions, and I probably wouldn't have been able to remember a lot of what was said.

Finally, although the gyn/onc isn't a specialist for breast care, he/she can proably recommend a doctor that you could see for that. It sounds like something that you should get checked out as soon as you can, for your peace of mind if nothing else! I cannot believe that your doctor just let that go for so long.

Please keep us up to date on what is going on. You are definitely heading in the right direction with your visit to the gyn/onc.!!!!

Unread 07-03-2002, 08:00 AM
Hi I'm still a newbie.

Sorry you are going through this. I know the feeling of not knowing, I see the GYN oncologist for the first time on Friday also. I had a CAT scan yesterday for masses on the left ovary and the left kidney that had been found with ultrasound. The GYN oncologist sounds scary but it's exactly who you should see in this case. Septated cysts can be nothing AND thick uterine endometrium can be just that. Try not to freak out just yet (I know, easier said than done).

I haven't had a CA125 yet because this test has a high rate of false positives that can be caused by a number of factors including endometriosis, benign cysts, being premenapausal, to name a few. So it entirely likely that your higher than normal reading is related to one of those causes. Also CA125 is only elevated in 80% of actual ovarian cancer patients meaning that 20% of those with ovarian cancer never have elevated levels. I understand that the test, while being of limited diagnostic value, is very useful in tracking treatment effectiveness in those 80% of ovarian cancer patients whose level were elevated since the levels drop as the treatments work.

You have a lot of stress on you with the hubby and child thing, but now is the time to focus on your own health. I think going to a new gyn was an excellent step in the right direction.

Good luck and get back on the boards to update us after you seen the oncologist on Friday.
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Unread 07-03-2002, 08:25 AM
Hi I'm still a newbie.

s Keggy

I am glad to see you are taking time out for your own health. I would echo everything that Joanine already said. It's great that you are seeing a gyn oncologist. They are the experts when cancer is suspected.
You are in my thoughts and prayers. Please let us know how the appt goes.

Unread 07-04-2002, 01:02 AM
Hi Keggy!

Glad to see you over here! I guess you got my message, eh? This is weird, but I also had enlarged left axillary nodes. I complained about them for a few years. I was brushed off as well. Until I saw my gyne onc! He sent me straight to breast onc. I had them removed last November. It is a very long story. I am glad you posted regarding your other concerns.

When you go to your gyn-oncologist, bring a list of questions for him. It is easy to get upset or flusterred. If your lymph nodes in your axilliary are inflamed, chances are he will order you a ct scan. They want to know and they do listen, better then any other Dr. I have been to.

Before you get scared that you have cancer running all through your body. Don't panic ! Your lymph nodes can be swollen and pressing on nerves causing pain. I lived with pain from enlarged nodes for three years. They can be swollen for a numerous amount of explanations, OTHER then cancer! Just be sure to really let your dr. know the details, amount of pain, duration etc... I know he will check it out!

Let us know how your appointment goes and don't forget to post anytime you need to vent! s and sss to you!
Unread 07-04-2002, 04:39 AM
Hi I'm still a newbie.

Hi Keggy,

I'm glad to hear that you have an appt with a GYN/ONC physician. I don't know much about what you are going through, though I'm sure there is someone here that has "been there, done that".

I also have a daughter with medical issues, and she had surgery for a chiari four years ago (she was three months in the hospital with all sorts of complications from that). It's hard sometimes to take care of yourself when you have others to look after...I understand. Now that I'm three months after my surgery, my daughter needs more medical attention again...sigh...

Anyway, glad you're looking after yourself and get some answers soon.

Unread 07-04-2002, 10:26 AM
You guys are wonderful!!!

You guys are just great I really fel better coming here and reading and hearing from you all. Gail, I was wondering if I would find any other parents of chiari kids here. My daughter has a developmental disability also and I run a communtiy support group for parents of kids with chiari and autism or other developmental issues. I also belong to another community "our chiari Kids" Have you herd of it???
I hope your daughters problems aren't related to her chiari. If you ever want to talk about it or come to my community your welcome too.
My doctor gave me a mild sedative to take that has also helped me sleep and not be such a nut bag. Actually when my daughter needed her brain surgery I was a total basket case, I'm handling this pretty well. Just feel like crying all the time.
Unread 07-04-2002, 10:36 AM
Hi I'm still a newbie.


I'll send you an email about my DD's chiari, etc....will do it later on today!
Unread 10-17-2003, 11:08 AM
Hi I'm still a newbie.

Hi Keggy,

I sure hope I'm doing this right its my first time. I can really relate to your concerns. In April I woke up with pain and numbness in my left shoulder and arm I also had numbness in left arm. I've been to many Dr.s and they have done many tests and they tell me they think its from a virus, but I have my doubts. I also have stomach problems and they think I may have endo, so they had me do a colonoscopy, endoscopy, ultasound, blood work,barium swallow and nothing showed up except cysts on my ovaries. I also have gas all the time and bloating. I also get stomach pain sometimes during my periods which I've been having some weird spotting. Three weeks ago I found a lump on my right breast! Just like you! I'm going to see my Dr. about it next week, but I am reluentent because I starting to feel like they will think I'm crazy. Please let me know if you get my response, and also how your doing. Also I still have the numbness in my right arm but at least the pain isn't so bad, except I've lost muscles especially the deltoid. I'm in physical therapy and they say it will come back when no one can say. Take care. Sue
Unread 10-17-2003, 11:27 AM
Hi I'm still a newbie.

I was just going through the new messages and saw your post. I have two children one with spina bifida, hydrocephalus, microcephaly, and chiari, he is very high functioning though but still has a lot of problems not nearly as many as he technically should given the amount of nerve damage he has. My younger son Kyle was born with craniosynostosis where one of the sutures in his head fused too early which generally does not cause pressure and while there can be some delays usually they eventually catch up to their pears with therapy, in my case the pressure was severe at 4 months when he had his first surgery. He had his second surgery when he was 18 months old at which time 3 sutures were closed and there was pressure again, before that surgery he didn't respond much to anything, but after there were huge improvements in everything other than language. Kyle just had his third surgery which again there was a lot of pressure for a long period of time. Kyle has been thought by a few to have autism but that was mainly because of his speech delay which we now know is not due to autism which is due to neurological hearing impairments which cause him to have total inability to process any spoken language. He basically acts deaf. Anyway I know what it is like to have medical issues yourself but to have to put your children's issues ahead of your own. I have migraines, back pain, uterin fibroid, as well as recurant hemoragic ovarian cysts. I only have one ovary left as my other had a large cyst that was removed then grew back torsing my ovary, so they had to remove the ovary.
I had a lump in my breast as well that I brought to the attention of my doctor who ordered a mamo who recomended an ultrasound and that came back that I had a cyst. A few years later it got to the point where my two breasts were different sizes and as if it isn't hard enough to find bra's to fit me now it is impossable because of the size difference, anyway I asked my gyn to give a referal to have the cyst asperated and she wrote the order only to get there and have them find out there is no cyst. It turned out that it is a fatty mass that hardened, they don't know why it is growing and every time I mention how my breasts are different sizes they tell me that is normal and everyone has some degree of asymetry between breasts. Yes but not like this and my breasts weren't always like this, I would like them to take that out but they don't want to so I live with it. My breasts are already rather large but my right one is dramatically larger than the left and I feel like it is noticable to people who are looking and really hard to find bra's one side is flowing over while the other one has space to spare and puckers. Anyway I hope you finally get some answers and are able to take a break from taking care of your children and take care of yourself for once.

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