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curious and concerned curious and concerned

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Unread 04-05-2004, 12:35 PM
curious and concerned

hi, new here...
in '92 i had my right ovary removed because it had a grapefruit sized benign tumor on it.... in '94 left ovary large cyst drained and biopsy... everything was ok...
I went to my gastro doc for a follow up on some abnormal liver results and my lower abdomen was tender so he ordered a pelvic and upper abdomen ultrasound... I just went on the 1st for him to tell me the results... liver & kidneys fine... then he said large ovarian septated cyst... i brushed it off and thought nothing of it and said i wasn't worried and it would go away within a month or two and explained i had already had surgery on that ovary and i wasn't concerned... and his composure changed and he then let me read the results myself and asked if i understood what they meant... and i said well it's a large cyst but not as big as the tumor they removed so i'm not worried...

he then explained it wasn't a plain cyst and what septated meant and urged me to see a GYN... I told him i hadn't been to one in about 3 - 3 1/2 years...

i didn't want to tell him other symptoms i've been having but been brushing off and been in denial about... but i will tell the GYN... i also have cysts on my cervix.... after intamacy I ache for hours and sometimes up to 2 days... like pressure, pain and cramp like labor... i don't have menstral cramps so can't compare to them.... i also have lower dull back ache like i did when i had the right ovarian tumor but not as bad... when i had that thing at the end i couldn't stand, lay down, i turned white like a ghost and green around the mouth and threw up violently until they removed it... I also have systemic lupus but lately since Feb I've been extremely more fatigued than normal lupus fatigue... get ready to go shopping, drive and get there and sit in the truck while hubbby shops because i'm too weak to get out of the truck... so somethings wrong... might be lupus flare but might be more? who knows?

so if she wants to go in i think i will request a hyst to just remove it all including the uterus and cervix instead of putting my body through surgery again in the future since my body is a cyst and tumor producer and putting our family through more financial strain... back in '94 the GYN wanted to do a hyst but i refused ... so maybe it's time to throw in the towel and get it over with

my great grandmother had breast cancer... and i wonder if possibly the gene was passed down to me.... i know i'm jumping the gun and am prob worrying for nothing...

when i pull up septated ovarian cyst online all i keep getting is cancer info... and i've looked at what they consider normal cysts and it's clearly what i don't have... and from previous experience and having a video of that surgery i know it's a little more in depth than a normal cyst...
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Unread 04-05-2004, 01:12 PM
curious and concerned

Hi Friend,

Glad you are searching for answers...because it has been my experience that if you don't ask, you won't get a straight answer and then still....sometimes you won't. You may or may not have cancer. I thought i had a majorly huge fibroid and it turned out to be OVCA....but...while i was staged 3c, I had a very good outcome. If they offer chemo...especially if they even THINK it may be cancer...take it my dear. It is not all that bad....REALLY....and it may save your life. And, if at all possible have a gyn/onc do the surgery....he/she will be truly your savior. Try not to worry and good luck to you....I say prayers for us all...we need them.

Love, Sally
Unread 04-05-2004, 01:59 PM
curious and concerned

your symptoms are worrisome but can be caused by many other things than cancer so try not to fear the worst. Just tell your Dr all your symptoms, have the necessary tests and see what is recommended. I pray you do not have cancer, but if you do there are lot;s of treatments available and this borad is filled with caring woman who are surviving, thriving abd supporting each other after and durung cancer treatments. Stay in touch, When is your appt?
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Unread 04-05-2004, 05:29 PM
curious and concerned

You really MUST see a GYN-oncologist. Even if this isn't cancer, given your history, it's likely that adhesions would make whatever surgery you need more difficult -- and the oncologists have 3 more years of directed surgical training to do whatever necessary to stage and debulk whatever this is.

I, too, had a septated, giant "mass" with a high CA-125 (200). Mine turned out to be endometrioma, which while not "pretty" is also not malignant. Even so, I wanted the special expertise of the oncologists -- we knew there was bowel involvement, and only the oncologists are certified to work on intestinal tract if needed.

If you also have cervical problems, and an auto-immune problem, it may be due to HPV. That carries such a negative stigma, but it really is just a virus that many, if not most, of us have contracted at one time or another. If you have active auto-immune problems, fighting this virus off may explain some of your new symptoms of undue fatigue, etc.

Your rheumatologist may be able to recommend an oncologist in your community -- they will need to know that you have problems with the lupus, obviously, and better if the doctors are able to communicate. If you've not been to a GYN in that long (BTW, me,too, when my cyst was discovered) then ask how long it takes for a new patient to get into the oncology practice. I know they squeezed me in pretty fast -- it was three weeks from diagnosis to surgery .

I hope all goes well for you, and look forward to hearing your updates as you travel into this uncertainty. You couldn't have found a more compassionate group of people anywhere to help you along!

Unread 04-05-2004, 06:09 PM
curious and concerned

With a septated cyst and the symptoms you have been having, I strongly urge you to make an appt with a gyn oncologist.
They are the experts when dealing with something that could be potentially ovarian cancer.
Best wishes. Stay in touch.

Unread 04-05-2004, 07:20 PM
curious and concerned

What wonderful advice everyone has given you. Please take advantage of our wisdom and let us know how you make out.

Unread 04-06-2004, 11:47 AM

thanks for your replies

my brother is a doctor but i can't talk to him about any of this because he's very arrogant and cold towards any of my medical problems... but if it does turn out to be malignant i will let him know for the sake of his daughter knowing since our great grandmother had breast cancer....

if it is... should i let my cousins know too so they can keep a heads up and be more cautious and diligant about seeing a GYN?

my younger cousin had cervical cancer but it was because of HPV... her mom is head nurse in Oncology in a hosp in Louisiana so she had a good support system there...
if it is malignant i would love to talk to my aunt about it but with our family history it would cause my mom emotional distress because of family issues... so i can't do that... so i will definately come here for support...

i know it won't be a death sentance... just a hurdle in life...

this morning out of curiosity i called my old GYN office in Alaska and asked when was my last visit and they said January of 2001... they packed away my records in storage... so it was longer than I thought... I thought it was 3 yrs.... sheeesh... main thing... after having so many reproductive probs (some other ch*ld bearing ones that I don't mention because of board rules) I've been living in denial and brushing it all under the rug trying to ignore it all in hopes it would all vanish and be a blurred memory but seems it may have caught up with me in the long run...

another thing I'd like for them to check out is my bladder.... I can't feel it... it's been 2 years or more since I can feel when I have a full bladder... I don't pee on myself or anything and can pee on demand when I sit but I can go all day without any senstation of needing to go... so I've learned through time to put myself on a schedule... first thing when i wake up, again around 3-4 and again when i go to bed ... sometimes i forget at night but when i lay down i can feel extra pressure in my pelvic area that reminds me to go release it... but i never have any urges to go.... but that could be from all the previous surgeries that i had, they might have cut the nerves or something?! i had 2 c-sections and 2 ovarian related surgeries and a tummy tuck (tt didn't involve cutting muscles though)

I also have chronic constipation and without miralax and xenical (diet drug that moves your bowels like laxative) my intestines don't move and I get impacted....

they've checked me for MS... but that came out negative with the bladder and bowel probs.... so that's a mystery

sooo in that visit with the gyn... if she mentions any notion that it should be checked out for malignancy should i request being referred to a gyn-oncologist? and if i don't and she does the surgery and if it is malignant will i later be referred to a gyn-oncologist who will go in again later to check out other organs and abdominal cavity if i pass up a gyn-oncologist the first time around?

the visit with the gyn is April 13
Unread 04-06-2004, 12:13 PM
curious and concerned

I would suggest that you promptly schedule a consult with an experienced, board-certified gynecologic oncologist and have him or her perform any surgery that you may require.

I would not be waiting for your gynecologist to raise any issues about malignancy nor would I be contemplating having a generalist gynecologist perform the surgery.

Good luck,

Unread 04-06-2004, 12:18 PM
curious and concerned

If your ob/gyn has the tiniest suspicion that you may have ovarian cancer, make sure you see a gyn oncology surgeon.
This specialist should do your surgery. It is your first and best chance of surviving ovarian cancer.
Please check out the following web page from the Johns Hopkins web site. Scroll down to the area where it mentions The Two Biggest Choices to Make, and read thoroughly.

Best wishes.

Unread 04-06-2004, 01:14 PM
curious and concerned

They are all giving you good advice. I didn't want to see a gyn/onc but my gyn said it was a better choice, and she actually refused to do the i had no choice. I am very glad i had no choice. Now, finding a gyn/onc, especially a really good one may be a problem depending on where you live. But, trust will be worth the extra effort and extra miles to have one do your surgery.

Good Luck,

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