Can you help me please?

SAMayoFL

I am going to try to not ramble or make this too lengthy.  About three months ago, I thought I had a UTI.  I was given a round of antibiotics.  About three weeks later I still felt like I had a UTI so I went to my GYN.  She said my urine was clear and there was no infection.  About three weeks later, I still had the discomfort of a UTI so I went to a urologist.  The urologist told me that since I have had cancer in the past, I am just waiting for the axe to fall again.  He said my urine was clear and that I need to stop worrying.  After a few more weeks I was still having the same symptoms.  I went to the GYN again who did an ultrasound.  My urine was clear but the ultrasound showed my right ovary was enlarged and my left ovary and uterus were enlarged from last year.  She wanted me to talk to a doctor in her practice who does the DaVinci hysterectomies.  I wasn't comfortable with that as I am BRCA2+.  I scheduled an appointment with my oncologist who said my best case scenario was my ovary was trying to function after chemo put me in menopause in 2010 and my worst case scenario was stage 1 OVCA.  I ended up traveling to Nashville last week to consult with a GYN onc.  As soon as he did the pelvic exam and looked at my films he scheduled me for surgery.  I should have realized that was not a good sign.  I had surgery on Wednesday and he was only able to remove my ovaries.  He found BC in both ovaries and my uterus.  He could not remove the uterus because of the cancer cells in the peritoneal.  He felt like the danger of spreading the malignant cells was higher than leaving my uterus until after treatment.  The discomfort I have had that felt like a UTI was due to a mass in the posterior cul de sac growing into, and partially closing off, my left ureter.  The day after the oopherectomy, they took me back to surgery to put catheters in both ureters which hopefully will help keep my kidneys from shutting down.

I live in a small town.  I don't know where to go from here. My GYN told me point blank that I do not have cancer because my tumor markers are low.  My onc. told me I do not have metastatic cancer because my tumor markers are low.  Can you please share with me where you went for treatment and why you chose there.  I am 46 years old.  I am scared and don't know who to turn to for help.  I feel like I tried to get help for the symptoms I was having and no one listened because my tumor marker are normal.

Any help or advice will be greatly appreciate.  Thank you!

evergreen9

I wish I could be helpful, but I live in Ontario and have no experience with your exact situation. Hopefully you will be answers soon. I am so sorry you are having this stress.

Pessa

The pathology report will show whether or not it is cancer.  Would consult with a MO.

DC197

Hi Susan,

I'm so sorry you are having to deal with all this.  I don't have any advice for you, except to say that if you are not completely satisfied with the care you are getting with your current gyn and onc, I think it's time to search for a new team.  I live in upstate New York, but I do know that there is a Mayo Clinic in Jacksonville, Florida that is a breast cancer center.  I know it would involve a lot of travel , but I think it may be worth it for you. I hope this helps.

(((Hugs)))

Diane

Leah_S

Susan, did your gyn and onc tell you that you don't have mets after your surgery or before? If after, did either of them read the pathology report from the surgery?

You need to make sure your onc addresses the pathology report, not the tumor markers. If he won't, it's time for a new onc.

Best of luck.

Leah

cheryl1946

I'm so sorry. Tumor markers are notoriously unreliable for some people; a lot of oncs don't even do them.

I am really surprised that your docs rely so heavily on them, and that they didn't investigate sooner.

That said, I would get a second opinion at the nearest major cancer facility. You could have mets, or a totally seperate ovarian cancer.

Sending (((HUG))) and best wishes.

Elizabeth1959

Has gyn-onc surgeon at Vandy presented your case at tumor board conference? Is this primary ovarian cancer or breast cancer mets? I think your surgeon at Vandy could and should provide you with direction

mamabee

Susan - Ramble all you want - what an ordeal you've been through! I guess, like you, I'm kind of confused. If you can travel, I think you need to see some different doctors. Can you get to a comprehensive cancer center (ie: Moffett, MD Anderson, etc)? I know from my own experience that there is a difference in the level of care you receive at an NCCN cancer center. As Leah wrote above, they need to be looking at your pathology, not your tumor markers.

Please keep us posted. Gentle hugs!

SAMayoFL

Ladies, thank you all for your replies.  I hope to get the final pathology report tomorrow.  From the frozen section biopsy the GYN Onc did during surgery he found BC mets in my ovaries, uterus, and peritoneal. 

So, did you all choose a cancer center based on location?  Are all cancer centers equal?  I am so upset that I went to three different doctors with my symptoms but was basically brushed off because of normal tumor markers.  I need to have the peace of mind that I am choosing a place that will give me the best possible chance of survival from here.  Within a reasonable distance are the Mayo Clinic in Jacksonville, M. D. Anderson in Orlando and Moffit in Tampa. 

I am 46 and thought BC was behind me.  This has knocked me completely off my feet.

clickhere4dawn

I am not sure where in Florida you live.  I live in Orlando.  I had my BC in Atlanta and my ovarian in Orlando.  I am also BRCA2+.  I have a sister in law that can get great information on doctors in the Florida Hospital network.  I also know great doctors in Atlanta, including a urologist that specializes in female urology.  If you want to PM me I will get as much information and names of doctors for you. 

Be proactive - it's your health, your life.  Don't stop till you KNOW it's okay.  Remember doctors are humans, just like us AND we know ourselves the best.  Follow your gut instinct - that is what the good Lord gave us.

Dawn