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Thickened uterine lining & large fibroids - Hysterectomy or Hysteroscopy/D&C Thickened uterine lining & large fibroids - Hysterectomy or Hysteroscopy/D&C

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Unread 10-07-2011, 09:00 PM
Thickened uterine lining & large fibroids - Hysterectomy or Hysteroscopy/D&C

I was diagnosed with fibroids in 2007. Some pelvic pressure, pain with sex, and longer periods but not the heavy bleading some have so I chose to live with them. Lining also appeared thickened in 2007 and again 2010 (annual transvaginal ultrasounds to monitor fibroids) so have already had 2 D&C's with hysteroscopy. Diagnosis has been polyps and simple hyperplasia w/o atypia. No other treatment by my gyn other than annual monitoring.

Went recently for my 2011 annual and ultrasound. Lining shows thickened again (11 months after last D&C) and fibroids have grown though in his words "not alarmingly so". Also seeing more small fibroids than on prior years tests, but said they have new equipment which he think is more sensitive. He first suggested I consider hysterectomy and then because I drug my feet he's now saying he will be satisfied with another D&C/Hysteroscopy which I am scheduled to have next Tuesday.

Now I've done lots of reading and am terrified that I may already have endo cancer, or my fibroids may be cancer, or that the hysteroscopy will actually spread endo cancer into my abdomen if I have it. Have myself worked into a frenzy. Not sure whether to cancel Tuesday's procedure (my poor gyn has scheduled surgery on a non-surgery day and is accommodating me at a different day surgery than he normally operates at because I want the D&C and I'm in the perfect spot in my cycle to have it right now.)

Should I cancel and just opt for a hysterectomy? He's already told me it'd probably need to be total abdominal because of my uterus size unless they used a morcellator which "might" be possible. He said they morcellate everything in a special bag so to not spread cells. He even said I might have to have a vertical incision because I'm thin which doesn't leave much room to work. I'm not sure how to get 6 weeks off work, not sure how to deal with my toddler grandson I'm raising, scared of dying, scared of blood clots, scared of bladder damage and fistulas and all that other horrible stuff. Thought keeping my uterus was the better option. Now not sure.

Time running out. Need to make a decision before 1pm on Tuesday, 10/11 and I feel totally backed in a corner. Advice??
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Unread 10-07-2011, 09:22 PM
Re: Thickened uterine lining & large fibroids - Hysterectomy or Hysteroscopy/D&C

tjc1965 -

The first thing that you need to do is breathe, slowly and deeply and try to calm yourself.

D&Cs are supposed to be the gold standard for endometrial cancer. There is some research that says they can spread cancer cells but there are others that say it doesn't.

If it would be cancer you would want a gyn-onc to do the surgery and not a regular gyn so one thing you would do is to talk to your Dr. about your fears. You may be able to get a second opinion with a gyn-onc..

My personal opinion is to try not to have surgery unless absolutely necessary because you can't put back what is taken out.

as you make your decision
Unread 10-08-2011, 12:51 AM
Re: Thickened uterine lining & large fibroids - Hysterectomy or Hysteroscopy/D&C

I can't really give advice because my situation was different. What I can say is that the hyster itself didn't cause many problems for me. Some menopause symptoms but nothing I couldn't handle. Age makes a difference - I was 50 and perimenopausal. If you're younger, there's more reason to avoid the hyster.

I'm probably a little too pro-hyster because of my surprise cancer Dx after surgery. For most people, endo biopsies or D&C will show cancer if it's there.
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Unread 10-08-2011, 08:13 AM
Re: Thickened uterine lining & large fibroids - Hysterectomy or Hysteroscopy/D&C

FYI, I'll be 46 later this month so am at that difficult age where I'm not sure what's best...keep things, or get rid of them. Obviously no functional reason to hang on to the uterus other than concerns that losing it could cause more problems than I have keeping it. Of course this month's cycle, after saying I don't have many issues, has been odd...I continued to spot and cramp to almost my 12th day. Seems to have stopped now. That also concerns me. I know, might just be the fibroids, but I don't generally spot past day 8.
Unread 10-08-2011, 08:28 AM
Re: Thickened uterine lining & large fibroids - Hysterectomy or Hysteroscopy/D&C

Hi Sweetie,

I am sorry you are faced with this difficult decision. Has your doctor mentioned any concern that precancer may be there either re a fibroid, given the thickened lining or fear the hyperplasia may move to atypia and thus a possible pre-cancer? Even if not, perhaps you want to get an opinon from a gyn/onc who are the precancer and cancer experts; s/he also may be able to allay your fears re cancer.

While the tests (biopsies and the gold standard "a D&C)for endometrial cancer are considered very good are; I had the latter,and post surgery I learned I had a very early stage. Nothing of course is full proof.
I also understand that fibroids very often shrink as on goes into menopause so you may need to consider this if you are approaching this. Has your doctor discussed this?

I know as you gather more information, perhaps get a second or even third opinion, you will come to the solution you are comfortable with. Also, pls remember although you do not want to inconvenience your doctor (re possibly canceling the scheduled procedure on Tuesday he is in your pay and you can always call on Monday and note you want to further discuss your concerns and go ahead or delay based on these discussions. Good luck.

Unread 10-08-2011, 09:51 AM
Re: Thickened uterine lining & large fibroids - Hysterectomy or Hysteroscopy/D&C

The doctor doesn't seem concerned about my fibroids being cancer hence his comment about them not growning at an alarming rate. I'm the concerned one here. However, the reason he wants the D&C/Hysteroscopy soon (or the hysterectomy) is because I've already been diagnosed with simple hyperplasia and his concern about my progressing to something more serious since he's again seeing the apparent thickened lining in my ultrasound done less than a year after my last D&C/Hysteroscopy. He says it's a small chance but one that can't be ignored and that's why he needs to check things out soon. So my biggest concern is that I turn out to be that "small chance" and I do have cancer, sure it may be diagnosed with the hysteroscopy, but it also may be pushed out my fallopian tubes and into my abdomen by that same procedure which might reduce my survival chances.

Ugh...frustrated with myself because I claim to have faith and yet when it comes to really putting things in God's hands, I'm strugging right now.

Unread 10-08-2011, 11:01 AM
Re: Thickened uterine lining & large fibroids - Hysterectomy or Hysteroscopy/D&C

Hi again,

Glad the doctor is saying he is not concerned re the fibrods possibly having cancerous cells,etc..

As best I understand there are studies re a D&C causing cancerous cells to move which both accept or refute this. My gyn/onc who is on the Amerca's Best Doctor's list advised me to have the test as he was one who did not think the D&C compromised things. OTOH a "gold standard" D&C is not always 100% accurate and in my case proved wrong - I had an early stage cancer not detected by this test, but due to "good eyes and experience" of my doctors and the pathologist, all said "have the surgery" as "things did not look good and there were many precancerous cells. Thankfully I heed their collective wisdom vice just the test.

You will make the right decision, although I know it seems very hard. Trust yourself. Re your final sentence. I fretted and worried for weeks until 3 days before my surgery I FINALLY "understood?" that He was in charge, would guide the surgeon's hand, etc. and would take care of me. The Sunday before my Tuesday surgery I told my Pastor about my upcoming surgery and said "I'm not worried, I'm in the Hands of He who loves us and promised never to harm us;" think he was confused too re my non-worried state I slept well the night before the operation while my DH was up most of the night as his blood shot eyes showed this. I went into surgery with "that peace that passes all understanding." I'll be keeping you in prayer to make the right decision, etc.
Unread 10-08-2011, 11:44 AM
Re: Thickened uterine lining & large fibroids - Hysterectomy or Hysteroscopy/D&C

You've probably already read about the risk factors for endo cancer. I didn't even know what they were until after I was diagnosed, then I started researching For me, the risks were obesity, PCOS, diabetes, never had children, started menstruation young. There are others that didn't apply to me. Checking out your risk factors won't give you a definitive answer but it's something else to consider.

In my mind, there's nothing wrong with getting the D&C first. The risk of hysterectomy causing cancer to spread seems small to me, no more than the risks of a hysterectomy causing it to spread. (I don't have any research to back that up, it's just the way it seems to me.)

If hysteroscopy/D&C finds something, then you'll know what to do. If it doesn't, you'll still have time to think about it. Good luck with whatever you decide.
Unread 10-09-2011, 08:16 PM
Re: Thickened uterine lining & large fibroids - Hysterectomy or Hysteroscopy/D&C

I don't have a lot of the traditional risk factors for endo cancer other than the pesky endometrial hyperplasia. Why I have it, I don't know, other than I suspect I don't have the progesterone I should to offset the estrogen based on missed cycles this year and more breast pain than I used to have .

The plan right now is to try and get ahold of my gyn tomorrow and talk with him, or at least his nurse, about the procedure and his thoughts on the possibility of spreading endo cancer if it were there. At that point I think I have to put it in God's hands and trust that he is in control. Easy to say. Not so easy to accomplish sometimes.

Thanks for you advice.
Unread 10-10-2011, 04:42 PM
Re: Thickened uterine lining & large fibroids - Hysterectomy or Hysteroscopy/D&C

Spoke with my gyn this afternoon regarding my concerns about the hysteroscopy spreading cancer cells if any were present. He agreed that there are studies that show it may be possible, but that there haven't been enough people followed for enough years to really prove that there's an issue. He also said there are times when a woman has a hysterectomy for an unrelated reason and cancer is discovered after the surgery is done and that in those cases there could also be a chance for microscopic contamination of cancer cells because of the way surgery was done and yet those women generally don't face a worse prognosis either. He feels that tomorrow's procedure is the conservative way to proceed at this point.

On the other hand, I asked again about my fibroids and why the latest ultrasound showed more and again he seems hesitant and can only say that he believes it may be related to newer technology picking up something that wasn't showing up in the past. I wish I felt better about that because I keep reading that people don't develop new fibroids in their 40's, so if they're something "new", what if they're not really fibroids after all? He said nothing in the ultrasound looked odd with the fibroids though.

So as of right now, I'm on with the D&C/hysteroscopy tomorrow afternoon, and then the wait is on to find out the results.

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