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  #1  
Unread 04-22-2003, 10:17 PM
Need Info PLEASE

Hi, Everyone!

I just found this web site and I think it's an absolutely wonderful place! I've read a lot of personal stories and have felt relieved seeing that there are many others with problems, too. I know it's dumb, but up until now I've sort of felt alone with my problems. It's comforting to know that I'm not alone after all.

Please read my "story," and please offer any advice, assistance, recommendations, etc. as any of you see fit. I've had this overwhelming *need* to have someone to "talk" to, and I would greatly appreciate any feedback any of you can offer.

I've had miserable periods for a few years now, so I finally broke down and went for a pap (it's been about 10 years since my last one -- I know, I know, shame on me!), and to plead my case for a hysterectomy. For several months now I've been keeping a journal of my menstrual cycles -- how often they come, how heavy they are, how long they last, etc. and I brought that with me to my appointment. I'm so fed up with the excessive periods I have that I've wanted a hysterectomy for a couple of years now. I just hesitated to actually ask for one, because I didn't know if I really *need* one, or if I just *want* one. (Does that make any sense?) I've got 2 grown daughters (27 & 19), I'm 45, and even though I've begun to suffer from hot flashes, mood swings, night sweats and occasional insomnia, each year my periods seem to be getting worse and worse, rather than slacking off toward menopause, so.....

I went to my regular doc (internal medicine) and had the pap done since I don't have a regular GYN doc. She did the pap and the internal exam and said, "I don't see anything that concerns me" during the visual exam of my vagina and cervix. She did say that my bladder had dropped, which was a surprise to me as I have never had any problems with leaking urine, even when coughing, sneezing, etc. Every once in awhile I have a little trouble getting the urine to begin to flow, but I've always thought of it as having a "shy" bladder. But, if I run water, relax, and give a little "push" once the urine starts to flow every thing is ok after that. I'm able to completely empty my bladder and I never have any pain/discomfort associated with it, so I've never really thought of it as a problem. Dropped bladder... hmmm.... who knew?!? If it's dropped, can they pick it back up? <LOL>

Anyway, while at my doc's, when she went to do the pelvic/internal exam, when she pressed down on my lower abdomen (while her other hand was inside me) I got a very tender/painful reaction. This surprised both of us!

So, because of my super-duper excessively heavy and way too frequent periods (they come every 20 days and last about 2 weeks, leaving me with about 5 to 7 no-bleeding days per month) she recommended that I go see a gynecologist to be evaluated and treated.

I made that appointment, but it's not till May 2nd. In the meantime, she sent me for a transvaginal ultrasound, and it's the results of the ultrasound that made me want to post this ridiculously long post here on HysterSisters.

I haven't gotten the results back on my Pap yet, so I'm still waiting to hear what that showed, if anything. My husband is an X-ray tech and he was able to get into the computer at the hospital to get me my actual ultrasound results.

Here is the report that I got on the ultrasound (which is kind of strange, cuz when my doc's nurse called me to tell me the results of the ultrasound, all she said was, "The ultrasound showed that you have fibroids so the doctor wants you to go ahead and see the gynecologist she spoke to you about for further evaluation and treatment.” As you'll see in just a second, what the report actually says and what the nurse told me varies quite a bit.

Report of Trans-vaginal Ultrasound: "The study demonstrates the endometrium to be thickened at 11mm. The uterus itself has a homogeneous pattern. There is slight widening of the endometrial canal, nonetheless, with some fluid in the endometrial canal. However, at the level of the cervix, there is a complex appearing structure. There are some cysts that may be Nabothian cysts, but, the overall appearance of the cervix is somewhat of a nodular appearance and not a typical cystic appearance. For that reason, into the differential must enter such entities as cervical neoplasia. No free fluid in the cul-de-sac is seen. Near the fundus, a 2.4cm leiomyoma is identified. The right ovary measures 4.2 x 2.9 x 3.9cm, the left ovary is not visualized.” <end of report>

Of course, the part of the report that concerns me the most is the sentence about the "complex structure" on the cervix that may be a "neoplasia.” Thanks to WebMD and other medical web sites (not to mention the fact that I am a LPN, but I work in geriatrics and know very little about cancer), I've learned that the leiomyoma is the same as a fibroid, neoplasia is synonymous with cancer, and Nabothian cysts are benign cysts caused by irritation to the Nabothian glands. I think it's kind of weird how the report basically says I have what may be Nabothian cysts, but they don't look like cysts, so therefore cancer can't be ruled out. My doc's nurse said I have fibroids (plural), but the report shows only one lousy little fibroid, and it's only an inch in diameter. The nurse never even mentioned the "complex structure/possible neoplasia" and since I wasn't supposed to have gotten that report from the hospital's computer, I couldn't question her about it, but I have to ask myself WHY she would say what she said? Is it because the doc doesn't want to worry me unnecessarily until something more definitive is known? Is it cuz they want to wait till the results of the Pap are known to see if the results support the ultrasound reports? Or, is she just dumping the problem in the gynecologist’s lap?

I'm very confused right now. I'm worried that I might have cervical cancer. May 2nd seems like forever away from now (till my GYN appointment). And, where the heck are my Pap results (it's been 11 days since the test was done)? My hubby seems to think I’m getting worked up over nothing. I say I’m not getting worked-up so much, as I’m just trying to educate and prepare myself. Is my behavior normal, or am I over-reacting?

If you've managed to get this far into my post, I thank you so very, very much for your time and patience. Any comments at all (Please!!) will be welcomed.

Thank you,
Nanette
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  #2  
Unread 04-22-2003, 10:32 PM
Need Info PLEASE

Nanette
I think information and the internet are a wonderful thing ,but boy can they scare the heck out of us.....I would call and ask to talk to your internist or better yet, ask for a copy of the report.... and then talk to the dr and ask for an explanation. I know I would drive myself bonkers with the waiting....there is no need for that....call the dr. and ask her to explain the report. I know you have to be careful not to say you already have a copy....Don't wait.....call the dr. not because of any urgency for med treatment, but for you to be able to have some peace over the next week.
  #3  
Unread 04-22-2003, 11:16 PM
I agree with Chris's post....

I think you should ask for a copy, then talk to your Dr. I can also tell you that my symptoms for Cervical Cancer were way different than yours. I had normal cycles. What I did have however, was bleeding after sex, and uncontrollable leakage of fluid. It wasn't urine, but a clear non smelling fluid, which alot would come out. I had to wear a pad everyday, cause it would come out everyday.

Those were my symptoms for cervical cancer. So with that said I would say to try to relax (easier said than done, I know) and see what the gyn tells you. I would think if the Dr really was concerned about cervical cancer, she would have recommended a gyn/oncologist.

's and ers to you
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  #4  
Unread 04-23-2003, 01:06 AM
Need Info PLEASE

Nanette:

You can and should request your own copy from medical records at the hospital where the ultrasound was done. The new HIPAA regulations work both ways (your husband is probably used to these, and I do hope he knows he could be fired summarily should anyone find out that he "snooped"...) . Anyway, as the patient, you have a right to any and all reports. You may need them should you decide to go for a second opinion anyway.

If there is any question on this, you really need to have surgery done by a GYN-oncologist who would have the expertise needed to truly assess any malignancy (should they find any).

I can understand your internist's reluctance to answer all your questions. She sees "fibroids", but she can't really answer, the way a GYN can, what really may be going on. That being said, it's unfortunate that all information wasn't shared with you, but by calling or visiting medical records, armed with your medical record number, you should be able to get that copy with no trouble at all.

Good luck to you, and let us know what the GYN says, OK? I can really relate to the delay in getting checked...I'd gone nearly three years thanks to moving out of state and insurance changes. I only went because a friend and fellow ultrasound technologist "looked" to evaluate possible gall bladder problems, which is when we discovered the giant complex cyst that led to my surgery last year. Sometimes healthcare providers are the WORST patients

I do hope this turns out to be merely cysts and adenomyosis, but in any event, it sounds like you're well on the way to getting the treatment you need. Do have your husband ask around about GYN oncologists, though -- if there is ANY question, it's truly the way to go.



Audrey
  #5  
Unread 04-23-2003, 04:17 AM
Need Info PLEASE

Thanks for your post. I would want to see a copy of that ultrasound myself. My family physician told me that my ultrasound was "perfectly normal", but referred me to a gynecologist anyway. The gynecologist showed me the report and it was anything, but normal.

I am waiting for a hysterectomy TAH/BSO for complex endometrial hyperplasia with atypia.
  #6  
Unread 04-23-2003, 05:56 AM
Need Info PLEASE

I am 43 and had a tah bso on 4/3 for very large ovarian mass that was not there in Nov. I found out a week after surgery that it was just beginning to turn into ovarian cancer. However I have been having hot flashes for years. I took birth control pill for several years but I smoke so they took me off them when I was 35. However my periods were so bad that they put me back on them about 3 years ago. Then I was put on prozac and remifemin for what I call menopause symptoms. All of this helped some. Nov of 2001 I had a "bad" pap smear. For years have had bleeding after sex. But in 2002 my pap smear was fine. Then went to the dr on 3/31 because of a lot of pressure, pain and felt a "ball" in my pelvic area when I laid on my stomach. I have been pretty good at getting my pap test because my grandmother died at age 45 with some type of female cancer. I found this site just a couple of days ago and it has been wonderful because I have felt so alone in this. Stay with us and hope all goes well.
  #7  
Unread 04-23-2003, 06:01 AM
Need Info PLEASE

{{Nanette}},
First off, welcome to cancer concerns. As you can already tell, it's a great place to get information and "think" out loud.

It's important to know your patient rights. My doctors gave me all copies of reports when I asked for them - they did not voluntarily give them to me.

I don't know why some doctors don't tell you the truth. I think it's real old school trying to "protect" the patient. That's a very outdated idea.

I really identify with your worrying. Hang in there until May 2, get a copy of your report and see the GYN armed with lots of good information. You need to take control of this - it will help your peace of mind - become an advocate for your personal health. I think when doctors see you're in control and asking questions based on knowledge, they'll be more forthcoming with information.

Be sure to post again after your appointment.
s,
Laura
  #8  
Unread 04-23-2003, 12:02 PM
Need Info PLEASE

Hi Nannette...

I know that all this waiting is very scary and it seems as though the date will never come.

Is the gynocologist that you are going to see an oncologist gynocologist????

I truly believe that if there is any question that there might be cancerous situation, this is the kind of doctor you need to see. My regular doctor insisted that I see an oncologist gynocologist when my ovarian mass was found thru an abdominal cat scan. In fact he researched for me and found the perfect doctor.

All I can say is that these two doctors, definately saved my life!!

Please check and make sure that you see an oncologist gynocologist.

Rosalie
  #9  
Unread 04-23-2003, 07:02 PM
THANK YOU!!!

Oh my goodness, but y'all are all so very kind here! Thank you for all of your caring responses.

My appointment on the 2nd is with a regular GYN. If he suspects cancer, I'll switch to an oncologist as you all advise.

Still waiting on the Pap results. Called my doc today to get copies of the ultrasound, but the whole office was closed. Wednesday must be golf day.

I'll keep you all posted on my progress. Thank you all again, so very much, you make a newbie feel right at home!!

*hugs*
Nanette
  #10  
Unread 04-24-2003, 01:06 PM
Internet . . . .

I agree with Chris5 in a BIG way. The internet is a wealth of information, but all that info can scare you. It does me. I have pretty much learned to stay away from it with regards to DCIS. But every once in a while I do a search . . . and then wish I hadn't. I know enough now. Don't want to read any more.

Mary D.
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