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Scared and waiting for results...... is it normal to schedule surgery before lab results come back?

AmyMarin's picture
AmyMarin
Posts: 4
Joined: Apr 2013

I am 45.  I went through menopause in my early 30's and have been on hormone replacement therapy ever since.  I've also had an ablation, and went through a period of years where I didn't have any periods at all.  For the last 3 or 4 years I've been getting estrogen and testosterone via pellets in my hip (while simultaneously taking progestin for one month out of every three).  Once I started the pellets I started to have irregular bleeding and spotting.  For the last 6 months I've also had a watery discharge that "gushes" out usually with exertion such as exercise.  The "pellet" doctor recommended I go to my usual gyn for further testing.  A couple weeks ago my gyn tried to do a hysterosonogram and biopsy but could not get the instrument into my uterus so rescheduled the procedure for a time when they could sedate me.  I had the procedure yesterday afternoon.  When I "came to" the first thing she told me is that I will need a hysterectomy.  They found a large polyp which they biopsied, but she was concerned with the abnormal fluid they found even more than the polyp.  The fluid was also sent to the lab for testing.  She said that their office manager would be calling me this week to schedule the surgery.  In the meantime when I got home I noticed that my "form letter" discharge papers said that I should hear back about my results in 10-14 days or to call the office in two weeks if I haven't heard from them.  My question to you lovely ladies on this website.......... Do you think there's any chance they would call sooner, if they find cancer?  And also, I'm feeling overwhelmed by the idea of scheduling the hysterectomy possibly before I have any results back from the lab.  I think the gyn is operating under the notion that the large polyp has to be removed regardless so scheduling the surgery now will save me yet another visit, but I'm just a bit unsure about all of this.  

TAyers's picture
TAyers
Posts: 47
Joined: Aug 2012

Hello Amy,

 My name is Tami I was diagnosed with Uterine Papillary Serous Carcinoma on May 18 2012 with grade 3 stage 3c. I too was 45 years old. I also had an ablation performed about 4 years ago, when my doctor went in to do my hysteroscopy she saw nothing suspicous. Even though I also had alot of watery, yellowish, foul smelling discharge for a couple months. I believe now the ablation masked my cancer. I was also spotting alot in between my periods ( The ablation never fully got rid of my periods). My gynecologist was in shock when she received the biopsy report, and she immediately referred me to an oncologist gynecologist. If I were you I would wait to see what the biospy says and if it is cancer get a specialist to do your surgery who is experienced in this area and know what they need to do for the best results. Your biopsy results could take that long, but they may come back even sooner. I know it seems like forever when you are waiting. If you have any other questions don't hesitate to ask. The girls on this board are great and will also reply to you as well. You can also email me as well. Tami

AmyMarin's picture
AmyMarin
Posts: 4
Joined: Apr 2013

Hi Tami,

Thank you for responding.  I am going to take your advice.  My doctor actually introduced me to the surgeon as she happened to be there in the office that day, but I have no idea if she's an oncologist. That will obviously be important.  Thank you for the kind words of support.  My husband tries......but his response is not to worry about it until I get the results back (ummm.....right!)  Plus, I'd rather be armed with good information when I have that next conversation with the Dr.  I will update with results, as I'm sure I will have even more questions then.  Love the sweet picture with your little one. Too cute. Amy

 

 

Kaleena's picture
Kaleena
Posts: 1199
Joined: Nov 2009

Dear Amy:

 

I was also 45 when I was diagnosed.  I went in for a "routine" hysterectomy and ended up with Grade 2, Stage 3 endometrial adenocarcinoma.   Even though I had a laparoscopy and a internal ultrasound, prior to my hysterectomy they did not find anything then.   However, I had asked to have certain tests done (like a CT scan) prior to my hysterectomy and said I didn't need them.  I should of had them done because they may have seen the cancer prior to my hysterectomy.  Because they didn't, I had to have another surgery for staging.

 

Like the other poster said, make sure your surgeon is a gyn/onc especially if they feel that there is a chance it could be cancer.   Also find out what kind of hysterectomy you are going to have.  Since you have been having troubles I would make sure you would have a total hysterectomy (ovaries, tubes, etc)  Also see if they are removing the appendix and omentum.  Talk about all of this with your provider so that you can make the choice that you feel most comfortable with.  

 

Waiting for results is so annoying.    Keep yourself busy.    And if it is driving you crazy, call the doctor's office up and aks if the results are in.  Also, ask questions.  All questions are important when you are involved.

 

Wishing the best for you!

 

Kathy

(P.S. - I'll be 53 in a couple of months!) 

AmyMarin's picture
AmyMarin
Posts: 4
Joined: Apr 2013

Hi Kathy,

Thanks for sharing your story and for the excellent information.  I hadn't even thought about asking for removal of the appendix and omentum.  Sometimes I feel like we have to be proactive and be an advocate for our own health.  I had been telling both of my doctors about my symptoms for a period of several years, and it's taken that whole time even to get to this point of realizing something is really wrong.  Waiting is extremely difficult but I feel calmed by having more and more information, so I really appreciate you taking the time (as well as the other poster Tami) to help others when you have your own busy life to live. Thank you so much, Amy.

Cinzina
Posts: 1
Joined: May 2013

Whatever your outcome, I wish you the very best.  Here is a quote I came across that has helped me cope.  It is from Neil Gaiman, one of my favourite British novelists: "Fairy tales are more than true: not because they tell us that dragons exist, but they tell us that dragons can be beaten.

I was recently diagnosed with endometrial adenocarcinoma. Nothing could have shocked me more, since I have no risk factors (besides being 58), and I was super-fit and completely symptom-free until 24 hours before my biopsy. I went to a major teaching hospital one day after I had a sudden, dramatic, out-of-the-blue bleed. I had inadvertently doubled up with two progesterone pills hours before the bleed, and I was thinking I just shocked my uterus into shedding its rubbish and maybe I should get my HRT adjusted.  

I didn't even pick up a hint that the doctor seemed to know immediately that I had cancer.   I had been scheduled to see a nurse-practitioner in the last appointment of the day on a Friday, but after she talked to me for a few minutes, she said she would go off and find "a doctor" to see me within half an hour. That should have tipped me off to something, in retrospect.

I didn't know that the doctor she found was a gynecological oncologist, who did an immediate biopsy. I thought it was probably some random 4th year resident. Naively, I'm still thinking this is just CYA stuff they have to do to rule out the remote possibility of cancer.  The gyn/onc nailed the single focus when she took the biopsy, and I had the results on the following Tuesday.  I didn't know there were various grades.  I am sure she would have told me if I had thought to ask, but she didn't volunteer that information, and thank heavens for that or I would have been even more terrified.  

When the gyn-onc called to tell me the biopsy was positive, she also informed me that she had already scheduled surgery (Davinci hysterectomy, ovaries, tubes, cervix) for April 18, though if possible she would move that up. It was a huge shock, and I couldn't believe it was straight into surgery with no real discussion.  I asked her if I should get another opinion.  I could, she said, but the biopsy was the biopsy, and no reputable doctor was going to recommend anything other than the huge surgery she had already scheduled me for.  I will say that she was compassionate in delivering the news.  When she called, it was six pm and she said she was on call until 11 and I could call her back over the next five hours as many times as I needed to as I processed the information and came up with new questions.  

Ultimately I had the biopsy, diagnosis, and surgery all in the span of about 3 weeks.  I am still trying to process all of this, but I am greatful that I didn't have a lot of time to be terrified.  I am sure by now you have some information, but from my perspective, I am not sure that any cancer patient ever gets as much useful information as she needs.

 

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