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do i need to prepare mysef for bad news?

sim.one
Posts: 5
Joined: Jan 2010

hi, i'm new to this site and i hope someone can shed some light on my scan results and symptoms. I'm 37, have not been able to have children and got a long gyny history relating to that. I have been bleeding and/or spotting between my periods for 8 months non stop now and also had midcycle spotting more than a year ago. My belly is bloated, i feel nausious all the time, sore boobs and non stop peeing. Now to my results: my pelvic scan showed that the endometrium was thickened at 14mm and was of mixed echogenicity with poor echo area near the fundus. Also a 3.4 x 3.5cm complex cyst on my left ovary. I've been referred to a hospital gynaecologist for further investigations. Does this sound like bad news. Please help i'm worried sick.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Hi...I am glad that you found this site. There are so many knowledgeable, helpful gals here that are so willing to share info. Plus, all of the threads on this Uterine Cancer discussion group offers a HUGE amount of info that you can reference in the future.

Right now, what you need is more information. It doesn't sound like you have received a diagnosis yet, so I would suggest you listen to everything the gynecologist has to say. I think it is helpful to have someone with you to write down what the dr. says as it is so hard to actually HEAR what is being said at the time. At this point, there is just not enough information to know what is going on, and that is certainly unnerving to say the least. If they determine that you have cancer a consult with an Oncology GYN would be highly recommended....they offer an additional layer of expertise than a regular GYN does not necessarily have. and can do the surgery, focusing on samples to obtain, etc. that will help stage your disease (if you have cancer) more precisely.

Surround yourself with positive people, stay in touch with your friends, and take one step at a time!

So, please don't hesitate to ask questions here....and once you have more info you can make better decisions!!

You are in my thoughts....Karen

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Karen gave you great advice. I strongly suggest you defer the worry for now - It is only wasted energy. Worry makes a sick person sicker. I know this is easier said than done but my 2 cents is to Visualize yourself WELL until given evidence to the contrary.

Blessings and peace to you. Mary Ann

Lisa 00
Posts: 109
Joined: Jul 2009

My advice is to get in to see the recommended docs as soon as possible. Meaning stay pro-active in getting your appointments. Don't let some clerk delay your getting treatment.

I will tell you that my initial ultrasound showed a "complex mass" on an ovary and immediately I was being told that cancer is highly suspected. Luckily mine was the worst in the uterus and the ovaries were still individually staged at stage 1 with the uterus being staged at stage 3. My initial complaint was that I was bleeding profusely.

The first reply you got was exceptional advice. Better than I could have said so I held off replying to you sooner.

I know this is a tough time. You will get through this and keep asking for advice and support on this site as there are some wonderful women here. Let us all know how you are doing.
Lisa

sim.one
Posts: 5
Joined: Jan 2010

Hi. I can't thank you all enough for your support, advice and kind words. It means more to me than i could ever express in words. It is very comforting to know that if bad news arrives that i will have people to share worries with. So big hugs to you all. Simone

Cecile Louise's picture
Cecile Louise
Posts: 135
Joined: Dec 2009

Big hugs right back at you! I'm glad you found us. I don't have anything to add to the great advice above, but wanted to reiterate the fact that you're not alone and this discussion board is an excellent source of information, comfort and comaraderie. Please don't ever hesitate to ask questions, make comments or even just vent! Please let us know how you are doing.

In health,
Cecile

Ro10's picture
Ro10
Posts: 1429
Joined: Jan 2009

Everyone gave wonderful advice. Take it a day at a time. Wait until you get a definite diagnosis, and then follow-up as needed. The advice of a gyn/onocologist is strongly recommended if more follow-up is needed. I hope your diagnosis will mean that you will not need to continue posting here. But we are here to answer any questions and offer support if needed. In peace and caring.

sim.one
Posts: 5
Joined: Jan 2010

Hi all. Since my first post i've been waiting for an appointment with a gyny and at last i'm seeing on on wednesday. I am getting very nervous now. I have spoken to my regular doctor to discuss my scan results and she said that if i was older i would have been seen urgenty but 'people my age (37, nearly 38) don't get ovarian cancer. I hadn't even mentioned the c word to her at this point. Apparently they decided to take the wait and see approach and they are hoping all will look normal on scan on wednesday. I'm not so sure.....i have now been bleeding for about 10 months non stop, got lower back ache, bloated belly, nausea sharp pains on left and right side of abdomen, fatigue and some other vague stuff. I haven't even been offered any blood tests. Sorry i seem to be rambling on and on but i am in need of a good vent. I hope that you are all doing ok and staying strong. Big hugs. Simone

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Simone,

I'd not worry now as you truly don't have enough information. Thickened uterne lining is very prevalent and can be thinned down during a D&C procedure, which is what I had. After that they'll use a scope and know a bit more.

Don't worry your little head as you're a ways away from even going that direction. Think positive and get into your next doc appt soon. Keep us posted~

Welcome to the boards...
Jan

Northwoodsgirl
Posts: 201
Joined: Oct 2009

Hang in there...soon you will have a definitive diagnosis and treatment plan. I know it isn't easy. There is so much to think about when you don't know what is the root cause of all of your symptoms. Please keep us posted of what you find out. Think positive thoughts!
Lori

sim.one
Posts: 5
Joined: Jan 2010

Hi all. Well i had an appointment with an ob gyn yesterday. She didn't do another scan to look for any changes which i haad hoped for. And going on my last scan she said the complex cyst was too small to be of concern (3.5x3.4 cm) and that the thickened endometrium with cystic appearance could be quite normal for someone my age (37). My last scan was 3 months ago so i thought it would have been interesting to see what it all looks like now. Anyway she is arranged one in the next 6 weeks or so (i'm in the uk so there are always waiting lists to go on). She attempted to take a biopsy of my endometrium but she couldn't get the instruments through my cervix but sent of bits of blood that was on the tools. So i might need that repeating. She also took bloods to be tested for CA125, CEA and CA1.99. And i've been given progesterone only tablets to attempt to stop my bleeding. So all in all i'm still none the wiser. I'm so glad i found this site so that i can get this stuff off my chest. My heart goes out to all you amazing people who have already been through this kind of anxiety to then be told the worst, to then go through major surgery and to then face horrendous treatment. I am unable to imagine what it must be like to live 'a normal' life after that. You are all in my thoughts. simone (hugs)

Northwoodsgirl
Posts: 201
Joined: Oct 2009

Thanks for sharing your update. So it sounds like now you are waiting for labs and pathology of biopsy ( even if it was not uterine tissue). They many need to put you under some anasthesia to get a uterine biopsy. I would still want the uterine biopsy. That is the only thing was confirmed my cancer diagnosis. Pap normal, ultrasound normal...yadayada.
Lori

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

It's OK to ASK for bloodwork or tests. The worst thing is they will say NO. I've learned to be more proactive and assertive with my healthcare providers. It's also a good idea to have someone with you when you see the doctor in case you forget to ask a question or need help to understand what they are saying or not saying.

It's your life and health. Take charge. Blessings to you. Mary Ann

jjmb126
Posts: 15
Joined: Jul 2004

Hi there, I am originally from the UK so sort of know the system and the one thing I do know is if you are persistent you will get all the tests you require. Seems like they have done all the standard things they do over here-even a CA125 which I don't think I have had in the 6 yrs I have been having various tests. Just make sure you get the blood test results before the 3 months.

The only thing that struck me is that you say she was unable to get the biopsy instrument through your cervix. If that really is the case and the results come back with insufficient endometrial tissue to examine (remember even in the UK you can ask to see you doctors notes to see what the pathologist wrote), then you should insist on a D&C as unless the endrometrial tissue is examined to some extend then you have no real answers. The Doctor should have the biopsy results within 10 day of doing it, so remember to check in with the doctor and if they say insufficient tissue to examine, then insist on a D&C with a hysteroscope.

I was in the position where I had a failed D&C for a thickened endometrium as for some reason the my usual Doctor could not get pass the cervix. I went to a Gyn/onc who basically said that if she couldn't get endometrial specimen via a biopsy , then I needed a hysterectomy to rule out any cancer risks. Fortunately, she was so expert at endrometrial biopsies she was able to get a specimen there and then, which showed I had a serious uterine infection, easily treated by antibiotics but at least she was able to rule out cancer.

Unfortunately, I am still under that same doctor as at my last ultrasound, I had a fibroid which appears to be still growing and it shouldn't be, as I am on the cusp of menopause (my estrogen levels are still too high for menopause apparently but no periods for a year) Add in the factor, the previous scans had been done by other technicians she was wants another scan by same radiologist in May, just to see if it growing or not. Basically it shouldn't be but scans are very subjective, especially measurements of such small objects. Fingers crossed, come May, I can stop all these continuous test and go merrily away into menopause.

Kethrycat
Posts: 5
Joined: Feb 2010

Simone, I am a bit older than you, but still in the range where it is unusual for people my age to get endometrial cancer. I had been bleeding at various amounts of heaviness since November when I finally went to see a gp in March (I didn't have an obgyn). She said, oh it is probably your menstrual cycle out of what some how and we need to stop the bleeding and she put me on a birth control pill that was just estrogen. She did an ultrasound and the report came back that there was a small something, probably just a fibroid. Well after being on the pill for 2 months, the bleeding was worse and I actually passed out from lack of blood and had to go to the emergency room. There were other steps along the way, but they can be skipped in this telling. The on-call obgyn after looking at me said I needed to see a gynecological oncologist right away and he got me in to see one the next day. I turned out I had uterine cancer, the mass was huge. It could have been caught in March if my doctor had thought outside the box, but people my age don't get uterine/endometrial cancer. So, not trying to be the bearer of bad news, don't let them use that as an excuse to delay or not do any tests. It is not common, but people in our age range DO get endometrial cancer. Rarely does not mean never. I wish you the best of luck and I hope that it is not cancer, but don't let there be any delay in doing an endometrial biopsy.

sleem
Posts: 92
Joined: Feb 2010

Check out the web for uterine endometrium stripe thickening. The last I reviewed 5-7 mm was in normal range.

aprillorey's picture
aprillorey
Posts: 104
Joined: Apr 2010

I saw your post and your not alone about not having children im only 29 years old my husband and i been trying to a baby but my body was all messed up with the bleeding and the clots big time i had a D&C done due to passing out from lots of blood and having need of a blood transfusion

on march 22nd i was told i had this cancer and will be now having all removed from me now it sounds like you have dont have a diagnosis just yet so take 1 day at a time all the woman gave grate advice im new to all of this my self and new to this site i will keep you in my prayers that you do not have this cancer but if you do your not alone i did alot of research after i found out i had it and was told only 15% of woman under 40 will get this my doctor told me i was very young to even have this cancer

So im very a scard i know the mixed feelings of dealing with cancer and dealing with the fact my dream child will never happen your not alone in this again take it one day at a time wait until u here what the doctor says

if you do have this we are here for you and if not we will rejoice with you over this to the person who said people our age dont get cancer

you need to do research 15% woman under 40 can get it meaning it is rare but it can happen im only 29 years old and i have it grade 1 right now and hope the complet removal of all will get all cancer so i dont no where you get your info but it can attack young woman to.

thanks

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

Me again :)

Long before this cancer came into my life, I struggled with infertility. Did treatments which taxed my body for 5 long years.

I am a Mom now to two beautiful sons through Adoption.

Life is surprising in lots of ways.....be open to some good surprises !

Laurie

aprillorey's picture
aprillorey
Posts: 104
Joined: Apr 2010

Thanks hun thats funny i was told that if you have Health Issues like cancer u cant adopt we looked in to alot of it but the Issues was the money we are in very very bad Debt out credit is very much bad im on SSI and they said if your on any kind of goverment help that you cant adopt both dad and mom most be good Health and thin in some countrys we tryed foster care and adopt but they told us we have to much Debt and we was to young so im helpless any advice would be grate

thanks

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

First concentrate on you getting well...

Although it is true having had Cancer and not having money put obstacles in your path towards adoption, it is not impossible....also being thin it is not a requirement....TRUST ME!

Children come into our lives in many different ways....sometimes not the way we plan for and in the obvious ways...Hang in!

Laurie

aprillorey's picture
aprillorey
Posts: 104
Joined: Apr 2010

thank you well i know china has laws about how much a person can weigh we been looking in to it or years but your right i need to get well 1st before i look in to things thanks for advice

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

My boys are from Korea and I am overweight :)

There are other countries without weight restrictions...actually China is flexible if you are open to a child with even a minor special need. We can email sometime in the future to discuss further :)

GET WELL !

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