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Ovarian Cancer Community
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Avatar universal

Need help with multiple symptoms

I am scheduled for a complete hysterectomy at the end of this month for bi-lat ovarian cysts and bleeding.  I am 49, pre-meno.  I have had abnormal uterine bleeding for several months and bloating exhaustion with terrible back pain.  Ironically, I was in ER for a kidney stone and they did a CT with results of bladder wall thickening, cystic structure at junction of bladder and uterine fundus; origin organ not certain.  Degnerative changes at the lumbosacral junction and several sclerotic lesions within right iliac probably represent bone islands. Bilateral adnexal ovarian cysts, moderate amount of fluid in endometrium with vague soft central tissue and a nabothian cyst.  Also noted was the stomach is remarkable for a smal hiatal hernia; bowels and lymph nodes normal.
A subsequent MRI said thickened junctional zone with several high intensity foci and left fundal region, 4.1cm left adnexal cyst with others within. Incidental note of multiple well-defined bilateral breast masses and correation with clinical exam and mammo recommended. (I had mammo and history of fibro-cystic breasts and doc said I have hundreds of cysts and it looked 'amazing'. Not good or bad, just amazing as there were many.)
The last ultrasound reading said thickened (1.7cm) endometrium; changing pattern of cysts (5cm cyst on right ovary). I can't help but think all this is inter-related.  CA125 is 12 and pap normal. Blood pressure was always very low until June now steadily rising 138/88 to 158/100 which is scary. Your thoughts? Can bleeding be endometrial cancer spreading to the bone?  Changing pattern of cysts seems worrisome.  I requested the hysterectomy and gyno agreed but I seemed more concerned than she.  I'm sked for consultation later next week. Doc is terrific at ordering tests and monitoring (since June) but I provide her with the history (kidney stone, urology report, mammo report).  She's not forthcoming with info and maybe she just doesn't know until surgery and doesn't want to worry me but I'd like to be realistic and have her or someone look at the whole picture. Can you suggest direct questions to ask her and the co-surgeon?  Thanks so much.  
6 Responses
Avatar universal
You do seem to have a lot going on and I cannot comment on that but I would strongly suggest to get referred to a gyn/oncologist.....that is who you want to perform your surgery.  Not because you are dealing with cancer but because this is their area of expertise and your outcome can be more positive when coupled with their additional skills.  Also....if your doc isn't forthcomming with the info you are requesting it might be time to find a different one....they owe you that much. YOU HAVE ONE CHANCE ATO GET IT RIGHT THE FIRST TIME.....see a gyn/oncologist. Please do stay in touch.
Peace.
dian
158061 tn?1202681926
Agree with Dian about a Gyn/Onc, but maybe that is the consult you are referring to for next week?  You did have a negative endometrial biopsy so that is on your side.  I did not go hyertensive until I was in menopause, and a number of my friens started elevating their blood pressures during this pre-menopausal period, you might want to talk to your family practitioner about it. they are more in tune with treating BP's than the gyn's are.  If you are looking to surgery, they will probably want it lowered.   What kind of kidney stones did you have?  If they were calcium stones did they check your calcium levels?  Did a quick google search, there is a hormone  from the parathyroid gland that regulates calciuma and if it gets too high, it can effect bone.  I hope you have another physican overseeing all your medical needs.  This is a scary time, take care of yourself, keep us posted.  
Avatar universal
Hello and thank you for your comments.  I meant to send this to Dr. Goodman, hence the details but I appreciate your responses!!  My hysterectomy will be performed by my gyno with another gynecologist, and it is scheduled for 10/29, specifically in response to the bilateral ovarian cysts and bleeding. I asked about a gyn/onc and was told by the surgical coordinator that both surgeons were extremely competent and highly recommended which I don't doubt, but neither are oncologists ( I have only met one.)  I am meeting with both on 10/23 and will ask again.  (I did think it was odd that there would be 2 surgeons.)
Thanks for the insight. The kidney stone was calcium but I wasn't given the calcium level yet was strongly advised to not add any calcium (oj, tums, etc) to my diet and that I should also not completely eliminate natural calcium (cheese, milk, etc) either.
I'm trying to keep myself focused and positive but feel that my body is slowly weakening. I was a picture of health back in the spring and since then, every test comes back with either more troubles, changing information or more tests!  I am hoping the surgery will provide answers and for a swift recovery.  Thank you so much for your thoughts.  


Avatar universal
Please, for your sake, remain pro-active and insist a gyn/oncologist either perform your surgery or be available and on-call......staging is done during the surgery....pathology will be sent up while you are under....you want a gyn/oncologist there just in case!  Please, please DO NOT take a chance.....it is great those two surgeons come highly recommended.....still, they are not gyn/oncologists and you want and need he most highly trained person you can get....I cannot overstate the importance of having a gyn/oncologist performing your procedure.   I agree this is a scary time....hang in there and please keep us posted.
Peace.
dian
Avatar universal
I recently had surgery done to have a large cyst removed and while the two surgeons who performed the procedure were not gyn/oncologists, they did make certain that one was available in case the pathology came back malignant.  Thankfully all was benign and they were able to remove the cyst and my right ovary and fallopian tube.  As Dian mentioned, they will do the pathology while you are under and my doctors told me in advance that if it was cancer, the oncologist would be the surgeon to come in and do the debulking and staging.  As a matter of fact, they would not do the surgery unless there was a gyn/oncologist available (had to have my original surgery date rescheduled because one wouldn't be available that date).  When you see your doctors again, ask them if they will be doing the pathology during surgery and if needed, will a gyn/oncologist be available to do the staging.  Please let us know how you make out.
295767 tn?1240191914
Believe me and everyone for that matter - YOU WANT A GNYO/ONCOLOGIST!!! I have a highly, highly recommended gyno who is extremely well-known and when I went in for a ultra sound with her, she found a mass that needed to be removed. SHE told me that she does hysterectomy surgeries everyday but she didn't feel comfortable performing this surgery, and that I should seek a gyno/oncologist IN CASE it was cancer. She was so right and I can't thank her enough. You want a specialist to do the surgery! Even when I saw the gyno/oncologist he told me that the mass may not be cancer given my age and no family history (I'm 27) but that he would find out during the surgery. It was, but having him perform the surgery was the best decision I made. Please take our advice and seek a specialist. Deandra
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