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Newbie with a question,scared and unable to function

angieinmd
Posts: 8
Joined: Nov 2011

Hello ladies,I'm Angie. I am 34,will be 35 in December. I have been glued to my computer screen for days on end now,and can't seem to get the information I need. Bear with me and let me give you the summary of my situation,and please offer help if you can. I went for a PAP smear,on September 29 of this year. Came back normal. Well,I began to worry that result may not have been accurate for a variety of reasons and so I had a second one done - different dr. - about a month later. This one came back abnormal,ASCUS result with a epithelial abnormality. At that point the gyn ordered a sono,which came back with the following -

Suspect submucosal fibroid versus polyp versus endometrial tumor.Endometrium thickened at 2.6 CM. (that's centimeters,correct). This is likely related to pt.'s menstrual cycle. Endometrial complex also has a small hypoechoic focus with posterior shadowing. May represent calcification versus a mass.

Now,about 4 days go by and I get a call from my primary dr.,who I guess was also sent a report as a courtesy. She says no biggie,it's a fibroid,follow up with your gyn if it bothers you. Well,it didn't bother me all that much,wasn't going to kill me so I let it go. About a week and a half after that,I get a call from the gyn who ordered the test,and she says I need to come in for a hysteroscopy and a colposcopy in December.I ask do they think it is endo cancer and they say come in,we can talk then. Ok. I decide to have the paperwork sent to another gyn to look at before going through with the procedures,and this one says same deal,that I need the procedures.Again,I ask - is this cancer,and the dr. says "It's too complex to discuss over the phone"-and I said that isn't a no,and she says,yes I realize that. And also can't see me until late December. I'm left wondering what those results mean,and I'd like to know if any of you had similar results and what the outcome was. I just don't understand why 1 dr. looks and sees a fibroid,and another sees cancer. I'm really ready to lose it with worry and haven't been able to eat in days. Does anyone have any insight or experience with similar sono results? In all my googling,I haven't seen how any of that is terribly bad.

Gracegoi's picture
Gracegoi
Posts: 59
Joined: Aug 2011

Take a big deep breath for me .

You sound so scared. I'm glad the GYN is ordering these tests for you so cancer can be ruled out. Looks like they are going to remove the polyps and fibroid and do a biopsy of the lining and then check out your cervix .

A fibroid or polyp can have cancer and the lining not invaded. In my case I had polyps and fibroids found and none of them were cancerous. My uterine lining did unfortunately.

. You can have precancerous cells and not have cancer anywhere and just have a thickened lining which I was told can keep women from concieving . They were hoping that was the case for me.

I'm amazed you felt the need for another pap and had one done and they found this. Thank goodness you followed your inner urgings.

Chances are VERY good you have caught it early.

I have had polys removed and a few adnormals paps all through out my 20's and 40's and they all ended up non cancerous. Funny how my last pap (post menapausal) came back normal and I had to knock on the door and say uh something is not right . It's a good thing I did and some people came into my life to enable me to be vigilant.

I don't know why the doctors are saying "Its complicated and we will talk at your December appointment. How long till your appointment? I think you have the right to know and not be treated in this manner and ask to have the surgeon doing the hysteroscopy to give you a phone call.

I misread the "colposcopy" as colonoscopy . Good thing I caught it early and saved you from the details of drinking a gallon of "go harshly" in twenty minutes .

Grace

angieinmd
Posts: 8
Joined: Nov 2011

I am absolutely livid with how the surgeon is acting. I have called,left messages,and even came in person and let the staff know how worried I am but she refuses to call me or even speak to me about this. My appointment isn't until December 21,and that is just a "talking" appointment,although the office said it is a pre-op,yet refuses to say what we are doing or why. I am scared,not only of the possibility of cancer but also of the hysteroscopy. The dr. office keeps referring to it as surgery,and yet when I look online,it looks like an office procedure. I don't like to be put to sleep,and I have had very bad drug reactions in the past and so it is actually the anesthesia that frightens me. I also have a blood clotting disorder which causes a much greater embolism risk after any surgery with general anesthesia.

You said chances are I caught it early,and what I am really beating myself up about is that I have had heavy periods for about two years,and looking at that report I can't help but wonder if the thickness of the endometrium correlates to how bad the situation is - 2.6 cm seems pretty thick in relation to what is normal. I also am so thrown by my primary physician saying it is a fibroid,and the gyn wanting to do surgery,and I wish she would tell me what she sees that is so worrisome.

To add insult to injury,the surgeon's office did call me and I got so excited and it was to tell me that they noticed an old debt of 23.00 from about three years ago,and wanted to talk about it. I told them we could discuss it in December.

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

You have alot going on for sure!

But I agree, you need to take a deep breath.

Kudos for following up when the original pap results just did not feel right....your inner sense is so important...

December is right around the corner, so try not to stress too much until you can get to the bottom of this confusing mess. I am assuming they are waffling because they do not have definitive and conclusive evidence it is cancer or it is not. All that legal malarkey...Still they should not be putting you off. We all started out the same way; some of us had obvious symptoms things were wrong, others no symptoms at all.

Do you have a Primary Care Doc who could make a phone call and perhaps act as a liaison for you? This can sometimes get things on a better path. Also, your primary should know how much anxiety you are feeling...Not good.

Please keep us posted..We are out here and waiting to keep you company through your journey, wherever it will take you.

You do not have a diagnosis yet, so stay positive! Sending thoughts and prayers your way!

Laurie

angieinmd
Posts: 8
Joined: Nov 2011

I managed to get an appointment with my primary doctor TODAY! She is going to see me at 12 to go over this and at least talk about what all the technical language on the report really means. Bear in mind she was the one who initially called me and said it was nothing,it is the surgeon who sees a problem. Maybe that discrepancy will be enough to make her want to know why the difference as well.

Laurie,I am hoping that is exactly why no answer from the surgeon,maybe she is legally not able to say yes or no - sometimes it is nice to just know their opinion,I'm sure everyone here has felt that way too. I'm somewhat comforted because I suppose if things were cancerous and advanced to the point of being obvious,there would not be much confusion at all. I do have one question and I know you ladies have been there - the radiologist never mentions any "cancer words" as I understand them,the thickened endometrium has a notation that this may be due to my cycle,and the mass/focus seen is identified as "submucosal fibroid versus polyp versus uterine mass". This sounds rather equivocal to me,and my personal take on it would be that if the radiologist saw cancer - in an advanced or obviously cancerous way - they would say so. When those of you who have a definite diagnosis had sonograms,was this the case? I am not saying that the possibility for cancer isn't there,only that the report doesn't indicate to me that the radiologist saw anything they could absolutely pinpoint.

And are my hysteroscopy fears way off the mark? I just want to be able to stay awake for it...

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Great news on getting that appointment...let us know how you made out.

The Radiologist can have opinions but as with any responsible healthcare provider needs to deal in facts....

The thickened lining is but one symptom of Uterine cancer....BUT it is also the same symptom of other things....the diagnosis of Cancer needs to be confirmed with a tissue biopsy, tumor removal, cell washings...all things which need to be analyzed and staged.

You are in the preliminary stages of diagnosing you with something....hopefully something which is not cancer and easily treatable.

Whether it is a Fibroid condition, a polyp, they will get to the bottom of it for sure.

Try to put this aside in one place in your head...don't let it consume you....you have a plan of action and still need to enjoy your life.

I know this is HARD, but trust me, letting it consume you ultimately makes it harder for you and your loved ones around you.

Why do you want to be awake during the Hysteroscopy? I had one years ago, but think I got IV sedation...take the drugs....LOL

Laurie

angieinmd
Posts: 8
Joined: Nov 2011

I just am getting home from the appointment. After seeing the dr.,she suggested re-doing the sonogram at a new stage in my menstrual cycle to see if there is true thickening or not,and gave me the order. I decided to just swing by and make the appointemnt in person since the radiology place is right next door,and they had a opening for 3pm! So,I've already had it done. Should have some answers either Friday or Monday,or at least a better idea of what is going on. The tech did show me the mass in the endometrium and said it is buried in there and does look like a submucosal fibroid in *her* opinion,but she couldn't make any promises,and did remind me that no one knows what anything really is unless it is biopsied.

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Checking in...

Have you heard any news on your sonogram?

How are you feeling?

Laurie

angieinmd
Posts: 8
Joined: Nov 2011

I haven't heard from the doctors office,but since I live all of ten minutes from the radioogy place,I just went by there and asked for a copy of the report. This time around the sono was done at what should be the thinnest point in the endometrium,and it stated the lining was of normal thickness,but the uterus is enlarged. This radiologist also called it a "probable submucosal fibroid" in the findings section,and also noted measurements,stating it is a clearly defined lesion. In the impressions section,it simply states submucosal fibroid. I honestly saw that,breathed a sigh of relief and went on about Thanksgiving and Christmas shopping. I am still going to follow up with my dr.,but to me I interpret this as clearly *not* cancer.

Gracegoi's picture
Gracegoi
Posts: 59
Joined: Aug 2011

Hi Angie,

I don't know how you managed to get this all done during the thanksgiving holidays but you managed.

Glad your on the up beat for the good news.

Shop on !

angieinmd
Posts: 8
Joined: Nov 2011

I essentially just made a total nuisance of myself - sometimes that is the only way to get things done!

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Great news.....doing the Happy Dance for you!

Laurie

angieinmd
Posts: 8
Joined: Nov 2011

I did one too! Going to a follow up appointment tomorrow,but I am definitely feeling better about the whole situation. Tigger - you are an amazing woman to not only be going through what you are,but to still have the emotional strength to let others lean on you. Thank you so much for your advice and for answering my posts,and I am praying for your good health in the future.

angieinmd
Posts: 8
Joined: Nov 2011

I did one too! Going to a follow up appointment tomorrow,but I am definitely feeling better about the whole situation. Tigger - you are an amazing woman to not only be going through what you are,but to still have the emotional strength to let others lean on you. Thank you so much for your advice and for answering my posts,and I am praying for your good health in the future.

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