CSN Login
Members Online: 4

You are here

Great news!

CSN is getting an upgrade. All of your posts will still be here, but the website will have a new look, new features and be mobile-friendly. To prepare for the changes, the site will be down briefly at the end November. We’ll continue to provide updates as we get closer.    

Just diagnosed with EC on Jan. 7- have questions about next steps

serein
Posts: 9
Joined: Jan 2011

age 57 Dx 1/7/2011 EC atypical hyperplasia/low grade histology

Wow- do I ever feel fortunate to have landed on this site! I have been reading many posts trying to get educated so that I can ask the right questions of you. What a supportive, caring, intelligent, and truly helpful group you are. I can only imagine how lonely it was for people like us before the internet.

I am 57 and post menopausal about 2 years. Have experienced some bleeding in the last couple of months and knew I needed to get checked out. Ob/gyn did endometrial biopsy on Tues., 1/4 and she phoned me with the above Dx on Friday,1/7. She said my prognosis with the hysterectomy is very good as I caught it early. Because of a full feeling I've had for some time, I can't help feeling I might have more going on- like ovarian cancer, that would not have shown up on the endo biopsy- have not had the chance to discuss with her yet.

She did some preliminary consulting with a gyn/onc in Spokane, WA., where I will have the surgery. They want me to get a CT this coming week before the surgery, which is not scheduled yet. This is what I need advice on....isn't it best to have a PET and CT, so that you can not only see any masses but the cancer cell activity, as well? Also, what about MRI and trans/vag ultra sound? I'm confused about what all to ask for. I really want to have as much info as possible, for both myself and my surgeon, about what is happening inside before surgery...how widespread it is (if, in fact, I do have ovarian also), etc.. if there are decisions I need to make ahead of time about my wishes should more things need to come out.

I know I should feel good about this very, very preliminary Dx and prognosis, but I just have this feeling there is going to be more to the story- hope I'm wrong!

I would very much appreciate hearing from anyone of you that could offer some advice.

God bless you for being here, but of course, I wish you didn't have to be.

susafina
Posts: 134
Joined: May 2010

I am so sorry to here about your illness. But you have come to the right place. I have learned so much from all of the warriors here and now you are a great warrior too. It truly is a scary thing but know that you will get through this and we will be here to support you in any way possible. I was diagnosed last november much the same way you were. I am 54 and wasn't sure what to make of my symptoms. Although different centers do different things you have to listen to what the docs suggest and make your decisions. My doctors repeaated the biopsies that my regular GYN doc did. I just had a CT scan pre surgery. My oncologists did the sentinel node biopsies during surgery to determine the staging and tumor grade. I did not have a pet scan, but did have blood drawn for the CFA tumor markers. Many people do have pet scans so you may want to ask about it.
Always make sure you take someone with you to these appointments because you can't comprehend everything that is said to you. I took along a notebook to jot down all important information. It is overwhelming but remember you will get through this!!! We are all here to help. Post often and let us help. Remember it is allright to be scared we all are but together we will win!!!

serein
Posts: 9
Joined: Jan 2011

Many thanks for your response susafina. My ob/gyn did mention they would be sampling lymph nodes and I assume the sentinel nodes you had biopsied are those in the pelvic area. I did have blood drawn the day of my biopsy, but only to check my hormone level, not for CFA...of course I didn't have the results of the biopsy at that time. That may be something I should ask for, or at least bring up, prior to surgery.

Susafina, I really appreciate your information, advice, and reassurance- it makes such a difference! I hope you are doing well yourself.

Thanks so much,
Serein

Domina's picture
Domina
Posts: 62
Joined: Dec 2010

Hello Serein,

I am sorry to hear about the Dx u just rcvd., but u have found the right place. So many caring/understanding strong/fighting women!
I had problems for my whole life w/periods. I started @ 9 yrs.& my last period was 8/28/08. I was 52 @ menopause. I was Dx w/EC on 12/21/10. I will turn 55 this coming Sept.

I went for some yrs. of not ovulating & no periods, then months of hemmorhaging.
I had D& Cs, progesterone, biopsies, internal trans-vaginal ultrasounds. Always with endometrial stripes of 7-9mm. Biopsies always negative. Always watching the lining.

After going thru menopause & when the moodieness, hot flashes & night sweats finally stopped I thought I was home free. I did not know if my
Ovaries stopped, it did not mean I was not producing estrogen from fat cells/ other organs.

On 9/1/10 I started to feel "full", boating, pain in my left ovary, plus started crying all the time. By 10/23/10 I started bleeding/clotting a lot. Did
not do biopsy but did transvaginal ultrasound found lining 9mm & mass. Did D& C w/hysterscope on 12/13/10,got Dx'd 12/21/10.
Surgery is 1/12/11. I did not have pet scan but did have ct scan says so far contained in uterus. I did not have a can125 test.
I am grade 2, but they will stage after surgery.
Everyone is different, it is normal to have questions concerns & fears.
Please talk to your oncologist & get 2nd opinion if needed. God bless.

serein
Posts: 9
Joined: Jan 2011

Hello Domina,
Your posts and the responses from this forum have really helped me. I also have had the fullness feeling for some time, but absolutely no pain. I'm hoping the bloating/fullness is fibroids and not ovarian, but thus far I just have the results of the endo biopsy, which is EC/ atypical hyperplasia. I have had absolutely zero problems with periods, etc. prior to my last one a couple years ago, so I am fortunate compared to all you have experienced.

Thank you for the kind support and info. I wish you the very best with your surgery and will be anxious to hear how all goes.

Again, many thanks-
Serein

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Hello Serein:

So sorry you had to find this site! Sorry about your diagnosis but I am glad you found us. Before I was diagnosed, I had a laparoscopy and the transvaginal sonogram. The laparoscopy only showed that I had severe endometriosis and the transvaginal sonogram didn't reveal anything. I had a total hysterectomy and it was then that they found the cancer. It was both in the uterus and one ovary. After staging, (which involved another surgery), it was found that I had Grade 2 Stage ii/iiia. Prior to my initial hysterectomy, I had asked if I should have some sort of scan and they said no. I should of had one. If you could get a PET/CT. I think that would be great if they would allow it. Since they didn't think I had cancer, I did not get a CA125 either, although my CA125 isn't an indicator for me.

My symptoms were feeling full right away, started having bowel pain (thought it might be IBS), and I started having bloatiness. I had those symptoms for over a year. Went to the doctor. Had a colonoscopy (all good). Then decided to go to gyn. Said it was severe endometriosis. They put me on Luprom for 7 months prior to my hysterectomy. Then the rest was as indicated above.

Just so you know, my initial diagnosis was in September of 2005!

So what I guess I am saying is that I would go for some type of scan either CT or PET/CT. The benefit of a PET/CT is that not only will it show tumors, etc., it can light up any active cancer cells. Whereas in a CT scan, if they see a mass or something, then they may order a PET afterwards.

Also, you may want to ask your doctor if you get a hysterectomy what they are removing. When they went back in for my staging they removed my appendix and my omentum (which they say can be a recurrent spot) and of course lymph nodes. Just some thought. Although all diagnosis and treatments are different, it may be a question you might want to ask.

My best to you.

Kathy

hopeful girl 1
Posts: 454
Joined: May 2010

Serein:

I am sorry to hear of your diagnosis. I had the same diagnosis in Feb 2010. The endometrial biopsy showed cancer. My gyno thought we were catching it early but it did turn out to be stage 3C. I had complete hysterectomy, and removal of ovaries and some lymph nodes, and had 6 chemos and 25 radiations.

Prior to surgery I had an endometrial biopsy, ultrasound (both outside and inside), ct, and PET scan from the knees to the neck. I also went and got a second opinion as well, and stuck with my second opinion surgeon.

Please know many of us here on the boards have been there, and we know what you are going through. We have gotten thru' this and you will too.

There is alots of great support and encouragement here.

Hugs,
Cindy

serein
Posts: 9
Joined: Jan 2011

Thank you so much for your note hopeful girl 1. I find it very interesting we had similar initial diagnoses, but yours did turn out more severe than anticipated. I have this feeling- not trying to be negative, I just have a strong feeling that may happen with me as well. I'm sure it was difficult news to hear after the initial diagnosis.

I also find it very interesting that you had all those tests done prior to surgery. That makes sense to me, but so often we are at the mercy of the insurance companies that want to cut their costs amd make it tough to get them. I'm very glad for you that you were able to get them. Then when the surgeon goes in, they have more info so they know what should come out (in addition to the hysterectomy)and what should be biopsied while they're in there. That could save additional surgeries perhaps, and all the associated costs- both financial and for your future health outcome.

I am very greatful for your helpful note and your words of encouragement. I wish you the very best.

Serein

serein
Posts: 9
Joined: Jan 2011

Kaleena, a thousand thanks to you- these are exactly the specifics I'm concerned about. I really want as much info about what is going on as possible prior to surgery, so they can deal with the whole picture- and thus possibly avoid additional sugeries or missing something that could have been caught earlier. Question: if I have a PET/CT, would that eliminate the need for an ultrasound...my guess is it would.

All the very best to you and heartfelt thanks,
Serein

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

You're welcome, Serein. First of all, I would certainly ask your doctor all of these questions. I believe a PET/CT scan would eliminate the need for an MRI and ultrasound, but sometimes doctors order things to look for something particular. However, be aware that a lot of insurance companies won't cover the PET scan at first so the PET may not been an option for you. Also, if you are getting a total hysterectomy, then I don't think the need for an ultrasound is necessary. It also depends on what kind of surgery you are getting. Traditional or DaVinci. I had traditional.

On a further note, I had a positive biopsy in October of 2009. I was ordered a CT Scan which showed nothing, then a PET/CT scan (showed nothing) and finally an MRI(negative also)! The technicians at the scan place was wondering why I was getting all the tests when the first one then two were negative! I kept asking the same question also because I was led to believe that a PET/CT scan was the best in the scan area. I don't know why I let them do all the tests but I did.

With a PET/CT I believe they can do 3D images.

I hope I didn't confuse you! But like I said all diagnosis and treatments are different. Don't be afraid to ask your doctor all of these questions. If they don't want to answer them, maybe get a second opinion. Also, you can call the scan place and they can tell you about the different types of scans and what they do so you will know for yourself.

I am glad that you are taking an active part in your treatment! It is certainly the thing to do.

Sending hugs and blessings your way.

Kathy

P.S. Other tests that they may perform is a barium enima to check the colon or a colonoscopy.

serein
Posts: 9
Joined: Jan 2011

Again, many thanks Kaleena. I talked to my ob/gyn's assistant today and it sounds like there may be some trouble getting the PET, but I will talk to my doc tomorrow and tell her I really want it- see what happens. I do supposedly have 'good' insurance but that doesn't always mean much. I really like the idea of the combo PET/CT, because the PET shows the activity of the cancer cells and the CT would show the masses/tumors (I think). I really like your idea about calling the scan place to find out more about the scans.

I want to know more about what is going on with you and others on this site. When I get this prelim stuff nailed down, I will read more of your posts and catch up with what is going on with YOU, and hopefully not just be a taker here. I admit, I do have to be a taker for now though ;)

Yes, I have to be an active participant...seems sometimes like a fine line between being obnoxious and being a strong advocate for yourself. I advocated for years for both my parents so that is something I do have practice at and am thankful for.

I send hugs and blessing back to you Kaleena,
Many, many thanks,
Serein

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

Serein,

I am sorry that you had a need to find us, but sure am glad that you did. You are definitely in the right place.

When they do surgery, they typically remove the uterus, ovary, tubes, some lymph node sampling. Be sure to ask what they are removing. They typically add a clause to the permit allowing them to remove any things else that appears to be a problem.

Am glad that you will under the care of an GYN-Oncologist....they are the best prepared to manage your care and know what to remove up front the first time!

They typically do a CA-125 before....it was not a marker for me but it is for many women on this board. Also find out what other tests they do, i.e. tumor markers, etc.

I agree that a CT scan can be helpful but it does not always show everything so a CT/PET would be ideal but as others pointed out it is hard to get a PET scan approved at this stage of the game. An ultrasound seems unnecessary and was inaccurate in my case.

The DaVinci method is very fast recovery....Minimal pain and typically just an overnight stay in the hospital.

Most gyn oncologists have excellent nurses who go over things in detail with you as well.

As others suggested, do have your list of questions ready and take someone with you to take notes as you just can't remember everything they tell you. Some people actually record the sessions.

Also, be sure you get copies of all scans, lab work, operative reports, pathology reports etc. If you collect them as you go, it is not so difficult if you seek another opinion, etc.

Best wishes to you....you are in my thoughts!

Karen

serein
Posts: 9
Joined: Jan 2011

Hi Karen, that is such a great photo! Thanks for the info about CA-125. I have asked for that before the surgery, so we'll see if I can get it. Interesting you say the ultasound wasn't very helpful. My ob/gyn talked about me getting a CT on Friday, but her assistant was talking ultrasound today- and I questioned her about it. So, ultrasound must be cheaper...that's the catch. Sounds like the CT/PET would be the best diagnostic option....but more expensive.

Thanks for the great advice on taking notes or recording. I do take notes but hadn't thought about recording. Also appreciate the advice on collecting all the scans/reports, etc..

You have been so helpful Karen. As I told Kaleena, I hope to learn more about you and others soon and offer you support as well.

All the best to you,
Serein

Always Hopeful
Posts: 234
Joined: May 2010

Your preliminary Dx is quite hopeful. Focus on the positive and do not try to deal with more right now...one step at a time. Let what you know sink in, hear what the docs have to say, question their reasons for recommending certain tests, gather your own info and together as a team make your decisions. I, too, always try to have someone with me when I go to docs, taking notes in my notebook so that I always have a chronological record of info. This came in very handy when I went for a second opinion at Memorial Sloan Kettering and they wanted me to tell them my "story"...symptoms, tests, docs seen, etc. etc. etc. I simply referred to my notebook and was able to provide them with all they required.

Unfortunately, insurance companies sometimes control the type of testing you might receive. Before my surgery in March 2010, my gyn ordered MRI's of the pelvis and abdomen. The endometrial biopsy had already been done and we knew it was UPSC. I had traditional abdominal surgery (north to south incision) and recovered wonderfully from it.

Wishing you much success in all that lies ahead. Know that you are not alone and that the women on this board are unbelievable sources of much support and information.

Peace and hope, JJ

stloosandi
Posts: 9
Joined: Jan 2011

Welcome and glad you have so many questions. We all do and this is the right place! I was one of the unfortunate women who disregarded a speck of pink after wiping in Jan. of 2010 and waited until June visit to gyn after a very sluggish and bloated summer! Only had strange yellowy discaharge but already feared the worst! But my GYN doc tried to do office biopsy...unable...then hospital biopsy...which was still unsuccessful -cervix would not open . So over the next months I was sent for int/ext ultrasound....which was too cloudy to read. Then later, a CT scan which did not show anything. Because my Pap came back with some cell changes...doc decided for full hysterectomy even though she felt she would find nothing. Sadly, (or fortunately?) my tumor (3.5cm) was discovered after removal and it was serous papillary and a grade 3. I was told I would need staging surgery 4 weeks after the hysterectomy....and now that I did the internal radiation I am preparing to begin chemo this week. You are right to ask for tests if something seems inconclusive....but everyone should also rely on their gut instincts because we women know our bodies. And as you can see, sometimes all the tests in the world are not so conclusive.

serein
Posts: 9
Joined: Jan 2011

Wow Sandi, your symptoms sound so similar to mine! The speck of pink a couple times, the bloating, the strange yellowish discharge...that's me!... and a lot more. You make me so glad I did what I did today. I stood my ground, said I had a strong feeling something else was going on besides EC atypical hyperplasia. I asked for the CT/PET and I reiterated my family history to my ob/gyn, and ran through my symptoms. I said I know the PET/CT can detect the earlier stages and I really want to have that info going into surgery.

My Dr. told me she didn't think my condition warranted the PET... but I know OC is a wild card and I do have a strong feeling something else is going on. I had also checked before talking with her and found out that my insurance does cover the PET- thank God. So she told me that I should go ahead and schedule a consult with the gyn/onc and talk about the pre surgery diagnostics. My consult is the 18th, next Tuesday. I feel very relieved about it all.

Sandi, the information you shared with me makes me even more convinced I was right to be firm and persistent. A million thank yous for your note! I am sending lots of good energy your way and wish you the very best.

Serein

stloosandi
Posts: 9
Joined: Jan 2011

Serein-
You do not know how relieved I am to even know someone out there can relate because even my own gyn all along was so sure it would not be UC. I think she could not ever detect the yellow discharge and certainly I felt weird telling her that it happened daily! You are so smart to demand the further testing and to fight for your own health! I have had a terrible 10 days post the first chemo...and I don't care if the chemo nurses are tired of my calls....I just want to be reassured that what I have been feeling is not abnormal. In the end, we must all become fighters for our health!
Best wishes....sandi

serein
Posts: 9
Joined: Jan 2011

Thanks so much for sharing your wisdom with me JJ. I agree that getting all the information recorded is really smart and could save a lot of confusion later on.

I am so glad to hear you are recovering well from your surgery. Thanks so much for the kind words and support- it means a lot!

Wishing you all the very best JJ,
Serein

Domina's picture
Domina
Posts: 62
Joined: Dec 2010

Hi how did the Dr appt go yesterday? Do you have a surgery dt scheduled yet?
Please let us know, we are thinking & praying for you. Hugz

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

I had delayed checking this thread. You have had good feedback. One thing NOT MENTIONED is the functional profile or tissue assay that will help determine best chemo response. You might also request that the hormone testing be done at the same time. This will give your docs the most info that will aid in best treatment for you!! Many docs don't do this routinely. I was fortunate that mine did - I did not realize this is not standard until reading posts here.

Some docs prefer CT and others PET/CT - mine likes the PET/CT. The CT exposes us to more radiation so that is a consideration for screening down the road. I think that either will give them info but seems to me that the surgery and staging will be the best thing and give you the most info. - they can get in there and SEE what's happening and take those lymph nodes and biopsy the tissue. I had open surgery, not robotic. I recommend that you get copies of your records along the way.

FYI: I'm 63 first dx with UPSC stage 3 in Sept 08 and had 6 rounds of carbo/taxol - no radiation was ordered then. I just finished treatment (chemo and radiation) for recurrence in supraclavicular lymph nodes. Just retired from FT job (I still work a little PT) to eliminate alot of STRESS from my life. I practice several alternative therapies (yoga, meditation, healing touch, and most recently tong ren) in conjunction with western medicine - along with anticancer diet and moderate exercise. I feel good and did all along which is the baffling thing about my situation. I start each day with specific intention to enjoy the wonders offered to me that day. So far so good....

I wish you the best - try to stay calm. Some of the things that made me cry alot in the beginning roll off my back now. The hair thing is small potatoes in the great scheme of things. Celebrate the gift of each day. With love and support, Mary Ann

RGK's picture
RGK
Posts: 20
Joined: Oct 2009

Serein, I'm so very sorry to hear about your diagnosis, but there is much to be hopeful in it. I don't know that I can add much to the great advice you've already gotten here. Just wanted to post to add my good thoughts.

Here's my story: I was 48 and perimenopausal when diagnosed in May 2008. For me, an endometrial biopsy showed complex hyperplasia with atypia, then they did a vaginal ultrasound that showed a thickened lining, then a D&C that was positive for endometrial adenocarcinoma. I did not have any kind of scan before surgery, but when surgery showed cancer to be much more advanced than they expected, they did a PET/CT scan (which I've had every 6 months/year since). A CT scan shows structures; the PET scan shows hypermetabolic activity. The other advantage of the combo, as Mary Ann pointed out, is that it subjects you to much less radiation. But it's also expensive, and some insurance companies won't cover it.

They will figure out what's going on when they do your surgery. Wishing you the best of luck and all else.
Reg

Subscribe to Comments for "Just diagnosed with EC on Jan. 7- have questions about next steps"