Scared in need of Support, diagnosed Hyperplasia Atypia 4thstage

I posted on New forum but figured id post here too as some forums may not always get read by those going thru certain predicaments such as what I am in.
So Hi im new and
I had my heteroscopy and d&C for thickened lining last friday the 12th. feb. Now its weds. and went for post op and lab was back and my dr. told me, I have good news and some not so good news..
I said ok .. he says .. good news is in our findings you have No Cancer .. no carcinoma in what we removed.
The bad thing is .. you do have hyperplasia atiypia which he said is in 4 stages.. we are very lucky we got it before cancer.
He says you are in the 4th stage so we must act on this as soon as possible. I will send you to a very good oncology center.. so that we can get the ball rolling. Ill put in a rush on the referral and you can make the appt. here is the number.

So I took the news alone and didnt cry til i got out of the office. Called husband and daughter and am still in shock.
To me it means .. I am borderline cancer. .. tho he says no cancer found... so that is scare enough. That i have no choice i must get this done.

He said he can give me progesterone now if i like but i can wait for oncology if i like .. Do I really need progesterone now before this hysterectomy does anyone know? I mean i can wait til i get to oncology to question but im sitting here stomach is in knots and im tryin my best to not cry constantly. I am a bit afraid of progesterone due to having hypertension and my obesity tho im healthy in every other way so my lab work says. ( had a normal ekg before the d&c)
I also told my dr. i cant get this done at least til my daughter gives birth with her first .. me a grandmother .. my first a grand daughter.
she is due mar 2nd.
Well I certainly hope i dont get a cancer before 3 or 4 weeks time. How fast does anyone know could i get cancer afterall im in the pre cancer stage (4th stage precancerous) even tho i just had a d&c scrape?

Im sorry i have to ask I know You all may not have all the answers but its worth alot to ask to me since I dont know how it all works.

I read up but still dont know what to expect.
I worry about the hysterectomy itself, firstly scared cause i am obese .. tho i dont smoke or drink .. i have had normal blood tests for the last year on everything but my thyroid which i take levothyroxine for.

And as I said, I also have blood pressure meds i take which i hate .. lisinopril due to cough irritant.
And since i have post nasal drip .. and diagnosed with rhinitis last weekend. I have to get that cleared in my opinion before op. I been now using nasal irrigations and its working wonderfully... and using a bit of claritin 5mg.
at night.
I also take trazodone which i take to sleep.
I have not been able to sleep well since i was sick in december with whatever it was going around. I have been coughing up until just this week coupled with that postnasal thing.
I know I will need something more to keep me numb cuz I am struggling to hold myself together .. Just as you all know Fear is a horrible feeling.

I have been taking half a xanax ot help me out .. seems to work some Would anyone know of a better type med i can ask for to get me through this anxiety pain in my stomach fear?

And Lastly.. for now.. when they say No carcinoma was found .. is there still a posibility my ovaries or uterus could have
some cancer cells on outside of them (like near my intestines or in lymphnodes) that are un dedected from just the d&c lab work?
anyway Thank you for any support you all can give me .. as i dont know where to turn to what to feel how to cope.. Thanks sincerely
xmistidawn
btw im 55 yrs old

xmistidawn -

Sorry you have to join our company but glad you find us.

During my D&C they actually found cancer so my surgery was rushed a bit (3 weeks from diagnosis to surgery). From my understanding endometrial cancer is usually slow growing so you should be okay.

Your Dr. may have concerns that that there is some cancer there and there is some research that a hysteroscopy could possibly force the cancer cells through the tubes. So this might be why your surgeon is pushing hard on the getting the surgery sooner.

As for could there be cancer elsewhere, unfortunately the answer to that one is possibly. Actually my gyn-oncologist told me that the difference between pre-cancer and early stage cancer can be in the pathologist who reads your report. Pathology is as much an art as a science and he said if you gave the same sample to 10 pathologist several would say pre-cancer and others would say stage 1. So that is also probably influencing your Dr.

There are many women here who didn't expect cancer at their time of surgery but it as found after.

This is such an emotional rollercoaster.

Hang in there, you have many people who will support you in this journey.



G.

Hi Xmistidawn- I'm sorry to hear you got the good news/bad news. I know all too well how scary all this stuff is as I am the same age as you and I also am overweight and on thyroid meds. I had my D&C and hysteroscopy in jan and so far I am "lucky" in that they did not find hyperplasia, just polyps and a very thickened endometrium. My gyn told me if I didn't take progesterone I would get cancer.

During the three weeks I waited for my followup appointment I did a lot of research and I was pretty much prepared to have a hysterectomy. I'd still like to have one but was informed that insurance wouldn't cover it without significant pathology. I agreed to the progesterone. I too didn't want the hormone either. We agreed on Prometrium because it is a bioidentical progesterone rather than Provera which is a synthetic progestin. I've only been on it for 3 days-but so far so good.I have to take it for three months and then see if it reverses the hypertrophy.

Anyway in my research I read that some people with hyperplasia with atypia try progesterone first before surgery. In some cases it has reversed the atypia. These are people who for personal reasons did not want a hysterectectomy (ex. they still wanted to have a child,etc..)
The reason I'm telling you this is because I'm not suggesting no surgery, it's just that you mentioned you wanted to wait a few weeks and taking the progesterone couldn't hurt and may be beneficial.

It's good that your gyn is recommending a gyn/onc because as it was explained to me, that surgery for cancer or suspected cancer, is a little more detailed than just a simple hysterectomy. The surgeon will remove your uterus, but will also explore your pelvic area and look for possible cancer, sample lymph nodes and do a washing. This gives you the best possible peace of mind in knowing they got everything should the pathology on the removed uterus reveal some cancer. As Taurus lady said, sometimes the postoperative pathology does show there was some cancer. If you didn't have the more detailed surgery, then one would have to have a second surgery to go back and check the pelvis and lymph nodes.

I'm passing on this info not to scare you, but to reassure you that it seems like your doctor is on the ball and has your best interest at heart and that's a good thing. Anxiety is normal and most doctor's will give you medication to help it or to help with sleep. You just have to ask for it.

I hope the next few weeks go well as you make plans and most cancers are very slow growing (if there even is any) and I'm sure you have time to make arrangements. I was worried about the same thing as our family is awaiting a baby too! I take care of my mom and my sister's daughter is due anytime now. So enjoy the new wee one and take care of yourself until your surgery. Hang out here and ask questions. Knowledge is power. And I too am sending you lots of <<<HUGS>>> Lynne

Oh thank you mollybear that is some sound answers that i can wrap my mind around.
Makes sense..
So I called the dr. office today course they call me back when im not at home.

I will ask for the stuff you are taking .. and avoid synthetics definitely.
I am also a bit worried about this causeing other cancer or heart problems.. but if i only take it for a short while perhaps ill be ok.

Yes that is good to know about gyn oncologist do a bit more then a normal removal.. after all if they are opening me up i rather them get it all done and leave me to mend.
I will have my husband there with me at all appts from now on too. Sometimes i get so emotional.

I will definitely need some meds for anxiety and fears. i need to feel mind numbing in some ways cuase im such a wuss ..

My thing is i should be strong but am not.. i look at my inspiration my mother who has survived breast cancer, colon cancer and lives with lymphoma .. so with that in my genetic history .. i guess i am bound to get something.
I am an avid hater of what corporate america has done to kill humankind too. Forcing us to eat bio engineered food / processsed over an over .. and I have been tryin to stir clear as best i can to stuff i know is pretty bad.
But perhaps we can reverse stuff in this day an age.. I look around me when im out and see so many older people then even I am enjoying life / some still smoking ( yuck) and just think .. well only thing to do is to live life to fullest as long as we can ..
I appreciate your words tho and love to hear from others too.
Btw also thank you for the answer too from tauruslady.
as far as pathologist readings are concerned.. I will need to trust that my pathologist read this well.. and thoroughly studied the stuff they took out of me.
I had 2 polyps removed as well which obviously also were
reviewed.. and there for not found to have cancer.

Its gonna take a while for me to feel more positive .. and not so scared.. the shock is just got to subside..
My main thing is that im thoroughly healthy when i go in to get this done.
Which i will be talkin to my reg dr about .. tomorrow i see her.
I will also stop in my gyn office and ask them give me the prometrium. ..
I hope i dont get sick from it.
Have you felt sick at all with it ?

Hi Xmistidawn- first off breathe.......this is a lot to take in over night. I'm a nurse and a lab tech and even though I thought I knew a lot about health issues these scares have shown me that there's a lot I didn't know. Last year around this time I went through months of breast cancer testing and I had a similar outcome. It was benign, but I'm still high risk. This hormone stuff is so complicated and confusing. I pretty much sailed through menopause because I am over weight and have LOTS of estrogen! But now I'm finding out that that is a two edge sword in that it raises my risk of both breast and uterine cancer. I swore I'd never take hormones but my gyn said in a way I was already. She said that so much unopposed estrogen was just like taking HRT but with no progesterone! She said the progesterone may also have a protective effect with the breasts also. So that is why I agreed to the prometrium. I had a lot of fears and have posted under the alternative forum. Even though prometrium is a bioidentical they still issue a long list of risks just like with the synthetics. (blood clots strokes, breast tenderness, mood changes etc..etc..) But someone else told me that that is probably the drug company covering it's butt. So I'm taking an educated leap of faith and I'm trying it. So far I can't feel any effect from it so that is good. Every one's response to meds are different so ultimately all you can do is try it. Originally the gyn wanted to give me a shot of depo provera so I wouldn't have to take pills every day. But the effects last 3 months and I felt that didn't leave me the option of stopping it if I encountered a problem.

Maybe you've come across this book since you talked about the food industry, but if not, I would recommend it if you have questions about progesterone. It's called "What Your Doctor May Not Tell You About Menopause" by John Lee, MD. Dr Lee was a pioneer in the field of bioidenticals and specifically progesterone. I had read his book a few years ago and even tried progesterone cream when I was perimenopausal. Since my time was relatively problem free and the cream was expensive I stopped using it. Maybe in hindsight that was dumb. But anyway, I dug it out and reread it last week and it helped explain a lot of this stuff. You can probably get it at larger book stores, I got mine at a health food store.

Try not to compare yourself to your mom or anyone else that you see as an inspiration. We all bring our own coping skills and history to our individual problems and we can only do the best we can. (Many years ago when I was a nursing student doing my clinical in a rehab hospital I complained to my therapist that my problem with depression seemed insignificant and small compared to the seemingly insurmountable problems those quadrapeligic and brain injured people had. And he said to me, Lynne you have a disability too, it just dosn't show, and that dosn't make it any less significant.) Those words had a great impact on me and I learned to be much kinder to myself. I'm sure this was too much info, but I wanted to explain what I said. Don't waste a minute second guessing yourself-your feelings and fears are what make you uniquely you. <<<HUGS>>> Lynne

Lynn.. Thank you.. your words mean alot.. I see what your saying of course.. I guess my best thing is to talk to the gyn or gyn oncologist .. will also discuss with my reg dr. who i have only seen 2 times since my med assoc. is stupid. and you rarely can get in to see anyone they force you to go to urgent care but give you no good real answers.
Only reason i have kept this med assoc is cuase i have access to my recordso nline. They really are lousy.. I feel ill change after i get all this stuff taken care of ..
so trying to get by its a tough one .. but guess all you can say to yourself .. your gonna wake up in recovery.. there is no doubt .. you will get better.. over time.
for me i just want to wake up i dont care how much pain i have. (as they can give me meds for that)
I tihnk anytime i have had operatiosn I have felt the same I pray to wake up with no complications.
perhaps that is the biggest fear we all face on these operations
Cuz after all when its being done those dr.s are looking for a way to make you better.. so they will look for everything to prevent you from getting or spreading any cancer.

One day maybe we will just have a vaccine.. we can dream.

to the forum no one seeks to join but where you'll find lots of women willing to share their experiences and give kind support.
Hearing the "C" word is very scary even when our docs say pre-cancer.I'm very glad your doctor wants you to see an oncologist - if possible a gyn/onc may be the best. As I understand encometrial cancer usually is quite slow growing so this should give you time to delay the surgery and await the birth of your first grandchild. I'd also suggest you ask the gyn/onc re taking hormones if you can get that appointment quickly.
Since you've asked about cancer being there -the difficult thing re endometrial pre-cancer is that even a D&Cwith hysteroscope- the gold standard - cannot provide 100% assurance cancer it is not present; this cancer grows inside the uterus which can only be completely examined post-surgery.
I hope you can get your appointment with the gyn/onc or oncologist soonest. Please keep us updated. I'm sending positive thoughts your way.