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Negative biopsy but still not reassured

Ktwoods
Posts: 8
Joined: Jul 2016

Hi everyone, I am post menopausal x over 4 years now but have been bleeding pretty steadily since the end of May. I had a TVUS June 5 and a ”fibroid” was seen in a precarious place in my uterus. My lining was not thick enough to alert my doctor who agreed with me to just watch and monitor, however, I kept bleeding, even getting heavier and also experiencing what feels like a UTI to go along with it. I have lower pelvis pain, with emphasis on my left side and left lower back, abdominal swelling, pain in my legs and extreme fatigue. All this and bowel changes too. My urologist ordered a CT scan and did a cystoscopy, finding my bladder clear but seeing the fibroid and also what looked like an ovarian cyst, and since I was still bleeding heavily, advised me to see my gyno that day. I did. My dr was on vacation and so the NP ordered another TVUS, after just having one a month ago. I was glad she did! She found that the fibroid had doubled in size in one month and my Lining thickened enough to warrant a biopsy. She scheduled me for a hysterectomy that day, to be performed on August 30. My biopsy showed negative. While I don’t want to look a gift horse in the mouth, I’m still concerned because I’m still bleeding and the pain worsens everyday! I was told by my dr’s nurse to take ibupropen and just wait for my surgery, (41 days away). were any of you originally diagnosed as negative for cancer, only to find you indeed were positive upon surgery? At the rate this thing in my uterus had grown in one month’s time, I fear it’s even bigger now and will be huge by the time I can get relief. If negative is my accurate biopsy results, is it still safe to wait this out and just keep bleeding and hurting or is something getting missed?  

Thanks for taking the time to read this, with no cancer diagnosis I’m invading your spaces but I had no other education tools to help me.  This may even be an ovarian issue...... I won’t see my dr until August 6 for my pre surgery consult.  

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

Most of the women posting on this board have cancer or are supporting someone with cancer and our comments are going to reflect that experience. So we're always going to be concerned about the possibility of cancer when there is post-menopausal bleeding and the other symptoms you describe. But it's true that a fast growing fibroid can also cause these symptoms.

A biopsy can be helpful, but can't always rule out cancer as the sampling may have been done in a location without the cancer cells. The hysterectomy will give you a definitive answer.

I recommend that you seek out a gynecological oncologist to do your hysterectomy, versus a regular gynecologist. These specialists are the best choice when there is even a remote possibility of cancer. And you may be able to move forward with the surgery sooner than what is currently scheduled.

I hope that you find that your problem is only fibroids. But please feel free to ask questions as you move down the path to surgery (and after, if necessary).

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

Very sorry you have been suffering with all these symptoms! It sounds as if you'll get a lot of relief from surgery.  I can understand your desire to have surgery as soon as possible.  Perhaps you can just let your surgeon know that if they have an opportunity sooner for surgery, you'll be willing!  Keep us posted.

MugsBugs
Posts: 111
Joined: Jan 2018

As others have stated I recommend a Gyn/Onc. or at least a second opinion.  A biopsy only takes a small sample And relies on hitting the right spot.  My biopsy came back atypical but not cancer.  I recommend you have a D&C with hystscopy because this allows the doctor to see and take sampling’s in the entire uterus that looks suspicious. This is how they found my cancer.  

Hysterectomy is different for noncancer and cancer patients.  They look more closely at the lymph nodes.  My doctor told me they consider any post menapausal bleeding cancer until it is proven otherwise.

Good luck!

Northwoodsgirl
Posts: 572
Joined: Oct 2009

KTWoods, I am sorry you are suffering! I agree with the other’s recommendations. Time is of essence in terms of preventing further suffering and getting a definitive diagnosis.

I don’t think that any of us who were diagnosed with uterine cancer didn’t have polyps, cysts, fibroids discovered upon pathology after our hysterectomy was complete. I think most practitioners who have a post-menopausal patient with bleeding suspect cancer, even though less than 10 % of vaginal bleeding turns out to be cancer- the issue is post-menopausal. Typically, a large teaching hospital will have a Women’s Cancer Center with GYN/Oncologists. Please keep posting because we care about you and want you to get the most appropriate care in a timely manner. If you are seeing a plain gynecologist and not GYN/Onc you are competing for surgery time with all the planned C-sections. 

Lori

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