Paging Dr Hive .... Female WWYD question

[Tap]

A fellow boardie asked me to post on her behalf for privacy reasons. 

 

I had my first ever abnormal pap smear in September. It was also my first pap smear that I ever had during the tail end of a cycle. It found Atypical Glandular Cells and no HPV. The AGC finding is a more rare and troubling finding--it can indicate uterine/endometrial or other cancers, such as ovarian. 

I will avoid going through all surgery and tests I've subsequently had...but I have severe stenosis of the cervix for some reason, and in office and then even under general anesthesia,  my gynecologist was unable to biopsy my uterine/endometrial lining for cancer.  This is unfortunate, as the AGC finding can indicate endometrial cancer. 

Basically, standard of care with the AGC finding is an immediate uterine biopsy, but that didn't work out. 

I did have a LEEP because my cervix was irritated even after antibiotics, though there was no identified cause. 

My gynecologist felt he had done all he could to look for uterine cancer. He told me to just live life. We would repeat the pap smear (post LEEP) in 6 months and then move to yearly if it is negative. If it is ever positive again, I would have a full hysterectomy. 

I got a second opinion. She told me that we really can't know for sure about the uterine without a biopsy. I have some risk factors for that type of cancer, though I have some protective factors too. That doctor did her own pap smear (3 months after LEEP) and ordered a repeat ultrasound. Both of those tests were normal. 

I haven't had my follow up yet, but I expect her to recommend 6 -12 month pap smears and just assume I am not a rare case of the types of aggressive uterine cancer that don't thicken the endometrial lining. I am also certain she will do a hysterectomy (ovary sparing probably) if I need it for peace of mind. 

I think I am about at menopause. But I'm also spotting a lot lately, multiple times a week for the last 2 months. Every time I have spotting, I think about the possibility that this is a sign of uterine cancer. I'm also bugged by the unexplained severe stenosis. So it is stressful for me. This makes me want to know, even if that means hysterectomy. But then hysterectomy is expensive and invasive, with risks and recovery time. 

My question is WWYD:

ask for a hysterectomy so you could be assured you don't have endometrial cancer causing this result and the spotting

or

just accept the small risk of undetected cancer and move on? 

[Katy]

I would ask for a hysterectomy. 

[freesia]

1 minute ago, Katy said:

I would ask for a hysterectomy. 

I probably would, too. 

[Pawz4me]

I don't know anything about this particular problem, but FWIW -- I had a hysterectomy in my early 40's (due to a large fibroid) and it was probably the best health decision I've ever made. I had no real trouble with surgery other than some post-anesthesia nausea, and recovery was a breeze. And life was so, so much better afterwards.

[prairiewindmomma]

I would have a hysterectomy. 

[fraidycat]

I would ask for a hysterectomy.

[WildflowerMom]

I had a hyster. at 29.  I would def opt for the hyster at this point, sparing at least one ovary if possible.  

[ktgrok]

If there was no other way to biopsy the uterus, I'd likely ask for a hysterectomy, given the spotting AND odd pap smear. I'd think they could get a look at the ovaries as well, during the surgery, since you mention ovarian cancer is another concern.

Edited March 29, 2023 by ktgrok

[Terabith]

I’d definitely go for a hysterectomy.  

[lovinmyboys]

I am going for an ultrasound tomorrow after a weird pap. I think I am almost ready to just take out all these organs- it causes me so much anxiety with the mammograms and paps and ultrasounds.  So, I think I would definitely do the hysterectomy.

[elegantlion]

Do the hysterectomy. I had everything taken out including ovaries (I had Hodgkin's Lymphoma in the 1990s - lymph node cancer). Because of my history, I was at a higher risk of developing cancer, so we opted to take it all. Agreed best decision ever, wish I could have had it done years ago. 

I was having heavy long periods - like can't leave the house crazy. 

[MercyA]

I would want a hysterectomy. I wouldn't want to keep worrying about it. 

My grandma had one ages ago and she loved to say it was one of the best things she ever did. 

@lovinmyboys, hoping your appointment goes well. Anxiety is so hard. 

[Ethel Mertz]

Definitely, hysterectomy. I had one (including ovaries). Reason was unusual spotting, leading to diagnosis of endometrial cancer (thankfully, Stage 1A).

[*Jessica*]

Hysterectomy, no question.

[Scarlett]

Definitely hysterectomy. 

[Shelydon]

I would also definitely do it the hysterectomy. I had one a year and a half ago and recovery was perfectly fine, minimal pain and no real issues. 

[Heatherwith4]

Hysterectomy for sure.  

[kathyl]

I had a "radical hysterectomy" back in 2018/2019 based on biopsies of uterus and cervix which both indicated cancer.  I told them to cut out everything - ovaries, etc.  The recovery from the surgery was a breeze compared to the recovery from the chemo and radiation. 

The only slight annoyance was that I lost a good bit of blood and I had told them not to give me a transfusion unless I was "dying".  (Too many nasty things transmitted via blood transfusions.)  So, I was probably weaker than normal until my blood recovered, which it did just fine.  

It would bother me that the gyn couldn't get an actual biopsy and give me a definitive answer.   The gyn I first saw sent me immediately to an excellent gyn/onc.  She easily got biopsies of both uterus and cervix, and we knew exactly what we were dealing with.  My uterine cancer turned out to be 1A, too.

I would get the hysterectomy.  

 

Edited March 29, 2023 by kathyl

[Spryte]

I would ask for the hysterectomy.

In fact, I did ask for a hysterectomy — and had one — at 28. No regrets.

[PeppermintPattie]

I would ask for a hysterectomy and have both ovaries removed. I would be willing to bet a lot of money that this is the advice an oncologist would give to you, also.

(I've had that surgery and am thankful every time I think about how much easier life is without irregular periods and that the pre-cancerous cells didn't have time to become cancerous!)