Is not having a biopsy normal? Please help!

rcdeman

Hi all, I stumbled upon this forum when I started desperately researching about uterine cancer.

My mother, age 65, was recently diagnosed with what could be this type of endometrial/uterine cancer. She recently did a Pap test along with a ultrasound in the pelvic and transvaginal area. Her Pap results came back abnormal stating "Epithelial cell abnormality consistent with adenocarcinoma," while her U/S results stated that there were several hypoechoic structures seen in the anterior body and one in the posterior body. Her endometrial canal is mildly thickened for a post-menopausal state.

She was then referred to an gynecologic oncologist who recommended the following treatment: "exam under anesthesia, dilation and curretage, laparoscopic assisted vaginal hysterectomy, bilateral salpingo oopherectomy, possible laparotomy, total abdominal hysterectomy, staging."

Is it normal to go straight to surgery without any biopsy or CT scanning beforehand? Or will they be performing a CT or PET Scan just slightly prior to surgery when she goes in? I am very confused right now and was wondering if someone who has more experience about this to enlighten me of the steps prior to surgery.

As of now, it's been 3 weeks after her Pap and U/S results and we have to wait another 2-3 weeks to get approved for surgery. Everything seems to be dragging on for way too long, in my opinion, and worst of all, we don't even know if she actually has cancer.

If I could get some clarification on the proper steps prior to and after surgery and whether it is normal that we don't know the grade or staging of whatever her cancer is, that would be extremely helpful. I'm in a panic right now.

Becca

TeddyandBears_Mom

Becca, It sounds like they

Becca, It sounds like they are going to do the hysterectomy based on the cells already reviewed. That doesn't sound like a bad thing to me. It will keep your Mom from having multiple procedures. They normally don't stage the cancer until after the surgery because they have to see penetration and spreading (or not) to make that determination.  Hang in there! The waiting is the hardest part. I would ask your Mom's surgeon about CT scans and other pre-surgery things for clarification.

Please let us know how everything goes.

Love and Hugs,

Cindi

janaes

Hi, welcome to our board. Its

Hi, welcome to our board. Its not fun to be here but there is great support.  I know others here have had different experiences so i hope others share too.  Mine is this.  I was having blood clots that were unussual for me.  When i went to see my doctor she set me up for an ultrasound and then another one a month after that.  At the time the doctor was just concered about a fibriod that was growing quickly.  When she found that she refered me to a gynocoligist who did surgery.  I saw a nurse practistioner at the gynocolists office and she did a biopsy to check for cancer.  I believe it was about a week later that the results showed cancer.  Two weeks later i was in the hospital having a total hysterectomy.

pinky104

rcdeman

After having bleeding, my GYN decided I should have an ultrasound.  When the tech found an abnormality in that, she called in the doctor who decided to do a vaginal ultrasound.  That showed a large polyp.  The doctor performed a D&C (dilation and curretage) on me a week later. The tissue taken out went to the lab, and the pathologist there found I had uterine cancer (UPSC).  I was then referred to the GYN/onc by my gynecologist.  I was taken in for an initial visit where the GYN/onc explained my type of cancer and said he'd do a daVinci robotic hysterectomy.  He ordered a CT scan, which I had at a different hospital, where I worked.  I saw the report and called his office, because I had cancer in several different places (uterus, both ovaries, the small intestine, and the omentum).  I left a message with a receptionist that my cancer appeared to be extensive,and I wanted the doctor to know this and discuss it with me, but frankly, I don't think he ever was told this.  He's a very busy man, and he didn't get to look at the report until the day of surgery.  I went into the hospital expecting to be out either that day or the next.  He greeted me before surgery and told me my cancer was too extensive to do my surgery robotically, and that I had to have regular surgery. I had a complete hysterectomy, bilateral salpingo-oopherectomy, omentectomy, and removal of cancer on my small intestine (I'm not sure of the medical term for that) plus the cholecystectomy (gall bladder removal) and an appendectomy all in the same surgery.  Gallstones were  found on my CT scan, so that's why I had the cholecystectomy done at the same time, to save me from having to have a future surgery for that.  I was in the hospital for 6 days because my bowel function didn't come back when it should have. Ten days after the surgery,  I was called in to the GYN/onc's office and was told I had stage IVb UPSC because the cancer had spread out of the pelvis.  That was 6 years ago.

If your mother's GYN/onc does the D&C and gets the tissue to the lab right away to be analyzed, he can do the hysterectomy, etc. in the same surgery and prevent her from having to go through anesthesia twice.  I don't think that's how most people have it done, but it's nice he'll save her from an additional hospitalization if that's what he's planning. 

I was diagnosed at the end of March in 2010 at age 61, and I had my surgery about 6 weeks later.  I wish your mother good luck.  She was fortunate to have had the cells show up in her pap, because most of the time, they don't.  I'd had a pap every year and nothing ever showed up on mine.  I didn't start bleeding until shortly before I was diagnosed.  Many women start bleeding in stage I, so they get diagnosed much earlier.

rcdeman

Thanks for all your quick

Thanks for all your quick replies. I am understanding more about the steps thanks to all your help and experience. As of now, I am writing down any questions I should ask the Gyn/Onc and surgeon.

It seems like we won't know just how much they will remove until they actually perform it, so the doctor's recommended treatment is just possibility. However, it seems his first suggestion of laparoscopic-assisted vaginal hysterectomy is likely. In this case, does anyone know if they still use power morcellation during this procedure? I heard that morcellation potentially causes cancer to spread around (and ultimately leads to recurrence) and I would like my mom have the most effective procedure in this case.

I am just hoping we are contacted sooner rather than later. Again, thanks for your replies! This is so harrowing. It's really sad that so many women have to go through this.

Editgrl

Johnson & Johnson withdrew power morcellators from the market and requested that all units be returned to them because of the danger that you cited.  I don't know that anyone is using it any more  But...  I would ask about that to make sure and to put your mind at ease.

I had laparoscopic surgery and they bagged everything and removed it vaginally.

Soup52

My experience was this: I had

My experience was this: I had post menaupausal bleeding, so went to my gyno who did a vaginal ultrasound which showed much thickening in the uterus. I then had a d and c which confirmed cancer so I was referred to the gynecologist oncologist. I then had ct scan and then robotic surgery with a 111C stage. There were weeks between many of these. First symptoms in mid July 2015 with actual surgery mid October. I've had 5 weeks of external radiation and three internal and then 6 chemos of carbo and taxol. I had a ct scan end of June this year and I am currently in remission. I know some people probably get things done quicker, but it really isn't uncommon where I live to have at least 2 weeks between tests and getting results etc. I live in a midsize city in central Illinois. We do have a good cancer center and my doctor is wonderful. Good luck and keep us posted on all of the results. 

rcdeman

Thanks for your reply, Soup52

Thanks for your reply, Soup52. I live in Los Angeles, which is a large major city. Usually the wait times is horrendous, but I didn't think it would be this bad especially if it's for a serious ailment/condition.

My mother started experiencing her symptoms in April this year, but she didn't get her U/S and Pap done until July. We got the results in August three weeks later, and now we are still waiting for surgery. Hoping for godspeed.

rcdeman

Editgrl said:

Johnson & Johnson withdrew power morcellators from the market and requested that all units be returned to them because of the danger that you cited.  I don't know that anyone is using it any more  But...  I would ask about that to make sure and to put your mind at ease.

I had laparoscopic surgery and they bagged everything and removed it vaginally.

Thanks for your response,

Thanks for your response, Editgrl. I am hoping this is the case. But I've read from somewhere that they still section off parts (as opposed to straight power morcellation) to make it easier to remove vaginally. I'm wondering whether there is a difference. Wouldn't sectioning off parts defeat the purpose of removing morcellators?

I will definitely be asking this question.

Kaleena

Staging, etc.

Becca,

They wont know the grade and stage until after her surgery.   There is no way prior to get that information.  Anything they remove from your mother will be biopsied at that time.   They will do an onsite biopsy and also send it out for a more thorough processing.  It seems that from what I read from your post that they will do the exam and during that exam will decide on how to proceed (laparoscopically or abdominally or both).   Sometimes they start out doing a laparoscopic surgery only to have to do a complete abdominal.   My guess is they are trying to do whatever is less invasive which is good.   Either way, they will be doing biopsies and from there staging if cancer is indeed found.    

I did not get any scans or anything prior to my original surgery.  I also had to wait 7 months for my surgery because they didn't feel I had cancer and they wanted me to take Lupron for 6 months.     On another surgery, they did a biopsy prior to surgery and it indicated cancer, but after my surgery the mass they previously biopsied and now removed was negative.   

I know you feel that they should move quicker.  I know I wanted mine out ASAP but that didn't happen.  Just know that the doctors do research and go before boards of physicians to discuss cases and treatment/surgery plans.   

My best to you and your mom,

Kathy

PrlJns

rcdeman said:

Thanks for your reply, Soup52

Thanks for your reply, Soup52. I live in Los Angeles, which is a large major city. Usually the wait times is horrendous, but I didn't think it would be this bad especially if it's for a serious ailment/condition.

My mother started experiencing her symptoms in April this year, but she didn't get her U/S and Pap done until July. We got the results in August three weeks later, and now we are still waiting for surgery. Hoping for godspeed.

Waiting can be scary!

My experience from start to "finish" was just under 4 months, but it seemed like forever!  I'm 59, 9 years post menopausal and started bleeding in June.

I wasted no time getting to my doctor, but the wait for a biopsy, tests, and hospital availability seemed to take forever when actually it wasn't.

I was diagnosed with endometrial cancer and had a Davinci assisted total hysterectomy on Sept. 8.  I have had no pain meds at all!  I just got the final pathology report and it was a Grade1, stage 1A cancer which was completely contained within the uterus.  No Chemo, radiation or anything else, thankfully!  Keep your head up, and I wish the same fantastic results for your mom!!

rcdeman

PrlJns said:

Waiting can be scary!

My experience from start to "finish" was just under 4 months, but it seemed like forever!  I'm 59, 9 years post menopausal and started bleeding in June.

I wasted no time getting to my doctor, but the wait for a biopsy, tests, and hospital availability seemed to take forever when actually it wasn't.

I was diagnosed with endometrial cancer and had a Davinci assisted total hysterectomy on Sept. 8.  I have had no pain meds at all!  I just got the final pathology report and it was a Grade1, stage 1A cancer which was completely contained within the uterus.  No Chemo, radiation or anything else, thankfully!  Keep your head up, and I wish the same fantastic results for your mom!!

Thanks for your reply, PrlJns

Thanks for your reply, PrlJns.

Unfortunately, my mom was found to have UPSC Stage IIIC1, Grade 3 days after her hysterectomy. UPSC is an aggressive, high grade cancer that has a higher chance of metastasis and recurrence. The doctor had been hopeful right after initial surgery that it was only endometrial cancer Stage 1A, but that was not to be after the pathology reports came out showing that one of her pelvic lymph nodes were involved. Because he didn't expect this outcome, he didn't remove her omentum or any of her para-aortic lymph nodes, which means she is actually incompletely staged.

She's still recovering from surgery right now and are waiting to get a PET/CT scan to see whether her UPSC has metastasized to other parts of her body. She will either have to go through a second surgery to remove any cancer (possibly her omentum and para-aortic lymph nodes, etc.) if it's metastasized or go directly to chemotherapy treatment and then radiation therapy.

The future will be a harder path, but I am praying with all my heart that her cancer is contained and that chemo will take care of any remnants of the cancer.