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Just got diagnosed yesterday with endometrial cancer

Chestnut51
Posts: 16
Joined: Jul 2011

I just got diagnosed yesterday. I am freaking out. Can someone give some words of encourgament?

Chestnut51
Posts: 16
Joined: Jul 2011

I totally lost. Please help me.

paris11
Posts: 132
Joined: Oct 2010

Hi my friend,

You are going to be OK. REPEAT: YOU ARE GOING TO BE OK...

I am so sorry. The very word cancer is terrifying...but the treatments have improved and YOU ARE GOING TO BE OK.

Please tell us a little more about yourself; whatever you are comfortable saying.

You will soon be receiving many responses and TONS of love.

I have been 4.9 years living with cancer.

Love, love, love,

Connie

Chestnut51
Posts: 16
Joined: Jul 2011

Thank you for responding. I think Im a little nutty now. Im from the Chicago area. I love horses thats where the chestnut came from. Im single and have a wonderful family. I need the support. I have to stop crying.

Chestnut51
Posts: 16
Joined: Jul 2011

I am going to repeat. I WILL BE OKAY!!

paris11
Posts: 132
Joined: Oct 2010

I would be happy to arrange a second opinion with my Onc at Northwestern. Many of his close collegaues are from Boston. Seems Oncs are always at meetings and in contact. Is your family in Chicago???

Just read your post - you live in Chicago??? Julian C. Schink MD at Northwestern; Diane Yamada MD at U of CHICAGO;
Jacob Rotmensch MD at Rush.

Dr. Schink is my ONC. I have heard both Drs. Yamada and Rotmensch give lectures. All three are on the A List.

I am ten minutes from Michigan Ave. I can meet you anytime.

Connie

antigone_42
Posts: 8
Joined: Jan 2011

Hi Chesnut,

I'm in the Chicago area too. I am a patient of Dr. Rotmench's at Rush. I was diagnosed in November of 2010 after a D&C my regular OBgyn performed because of heavy menstrual bleeding I was having. Because I am young and have not yet had children and my husband and I were actually trying to when I was diagnosed, I am on treatments of megestrol to try to reverse the condition. Dr. Rotmensch and his team have been very caring and supportive in addition to the fact that they are very experieced and knowledgable and can speak in terms of experiences with other patients about exactly what should be happening and what to expect.

I'm not sure where you are located, but in the south suburbs of Homewood and Mokena there are Cancer Support Centers that have different group meetings in person throughout the week. A support group to help talk through things can really help releive some of the early fears and anxiety you may be going through right now. I know it helped me.

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Welcome Chestnut to the club no one wants to join. You have come to a site that is full of supportive women 'who've been there' and a great resource of treatment options, etc. The diagnosis is scary but many treatment options are available today. What your doctor(s) recommend will have to do with the specific type (cell type), the Grade (how aggressive it is), and the Stage (how advanced it is at this time). Cell type and Grade can be determined from a biopsy, Stage is usually determined post-op - at minimum a hysterectomy is usually necessary.

So take a deep breath, relax, and realize that your world may suddenly seem to be turned upside down, but it is by no means over. I've been dealing with, thriving, and surviving cancer for 18 years, first with breast cancer and since late 2007, UPSC (Grade 3, Stage 4B).

We're here to help you get through it.
Annie

clscurnutt's picture
clscurnutt
Posts: 26
Joined: Nov 2009

Know how you feel. It really is a lost feeling initially. But now that you're here, you are certainly not lost. I was diagnosed and treated for stage 3 adenocarcinoma beginning in June 2009. Currently dancing with NED. Work, work, work to stay as positive as possible. Never give up and never surrender!

You are in all of our thoughts on this journey.

Lynn

Kaleena's picture
Kaleena
Posts: 1164
Joined: Nov 2009

Hi Chestnut:

Sorry about your diagnosis, but please don't freak. May I ask what Grade and Stage? I was diagnosed with Endometrial Adenocarcinoma back in September of 2005 with Grade 2, Stage ii/iiia. This is a doable thing.

Thoughts are with you.

Kathy

Chestnut51
Posts: 16
Joined: Jul 2011

Kathy,I don't know what stage yet or grade yet. I am learning all these things. I'm having a ct scan on Tues. then talking to the gyno Tues. pm about surgery. I do know that i live in Chicago and I am going to take advantage of all the wonderful hospitals we have here. Right now Im at a local hospital but I need to go to the big guns downtown. Thank you so much for responding to me. I feel better talking with people who have gone through this. I learned on one of the discusions to make sure I go to a gyno oncologist and someone who specializes in these surgeries. I am learning so much already. Thank you.
My name is Sandy. I have been diagnosed with the same cancer. I know I will be okay!!!

Elly P.
Posts: 4
Joined: Jun 2011

Yes, you will be ok. I also freaked out with my stage four cancer. Just know that the treatments have improved so much it is amazing. I take one day, hour, minute at a time. And so far I have not missed out on life. Just a few days of feeling drained from the chemo. Bless you Sandy. We love you!

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

It is hard not to freak out, but like everyone says, you are going to be OK!
I just finished 6 months of chemo, and I feel slightly tired and dizzy.
It was not that bad.

The main thing is to find a good onco/gyno, have your surgery, and then decide what treatment is best for you.

Keep us posted, please, so we can help you get through it.

Kaleena's picture
Kaleena
Posts: 1164
Joined: Nov 2009

Sandy:

Right now everything is going to seem crazy to you. Just hang in there. Also, you may be surprised if the surgery may be a month away. When you hear you have cancer, you want it out right away.

Take questions you want to ask your gyn on Tuesday. Don't be afraid to ask questions no matter how small of a question it is. Your gyne should refer you to a gyn/onc. So you will have to set up another appointment and wait again. Hang in there! Also, if you are not sure what your gyn/onc is suggesting, ask that you can think about it and/or get a second opinion. It is ok and a lot of doctors would suggest that.

Another thing, if you are to get chemo, the doctor may want to place a port. Don't panic about this. It is a simple procedure (out-patient), but it will save your veins and make getting treatment a lot easier. In fact, although I was done treating in 2006, I just had my port removed last week.

Also, if you are having a hysterectomy, ask what else they are going to remove. I had a total hysterectomy (removed ovaries, etc). At my Itstaging surgery, they removed my omentum?? my appendix and various lymph nodes. So you may want to ask about these things too.

It is good that you have a great hospital to go to. It should make all of this less stressful for you.

My thoughts are with you.

Kathy

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Hi! There Sandy,
I was diagnosed 2 yrs ago and am doing fine. It really is scary when you hear that you have cancer. I know I was so afraid my teeth chattered. Been through the surgery, chemo, radiation, etc. Finished treatment in Feb 2010. So far so good. I am feeling fine.

This site has some great ladies who are very supportive. I think you will find it a wealth of information and help. I know I have.

Norma

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

I am a year since diagnosis and surgery and six months since I finished Chemo. Hang in there, you can do I!
Sara

Chestnut51
Posts: 16
Joined: Jul 2011

I am happy I found this chat group. Thank you for all the words of encourgement. I know I will be okay.
Sandy

Chestnut51
Posts: 16
Joined: Jul 2011

Norma,

I know what you mean about teeth chattering when you heard the diagnosis. I just started to shake. I am getting control of myself and will feel better when I start getting treatment. Right now I feel I don't have any control. I just want to get it over with.
Thank you for your help.

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

Welcome to our group! You'll meet a lot of wonderful and helpful women who can hold your hand thru your process. I know just hearing the word "cancer" freaks us all out (did me), but know baby steps along the way and it'll be behind you so very soon. Doesn't seem that way at the beginning, but it's true.

The biggest thing at the start, get a good Oncol OB and even better if they have experience with whatever type of cancer you're diagnosed. I was lucky and referred to my oncol by my primary OB...wonderful people, both docs. Secondly read a lot and ask lots of question about any part of the disease from type, stage, treatments, side affects, foods, etc, etc. Don't get stuck on the statistics as --- WE'RE A STATISTIC OF ONE!!! You're unique and should be treated this way, not another number on the boards for statisticians.

Keep us posted on your progress as we can help you...ask us questions as you'll gain insight from any of us.

Best to you and BE STRONG, THIS IS JUST A SMALL BLIMP IN THE PATH OF LIFE. You'll get thru it as you've done with other difficult things in life.

Sending positive vibes......
Jan

Chestnut51
Posts: 16
Joined: Jul 2011

Jan,

I have learned so much already. All of you have been so helpful and supportive. Today was a much better day for me. Im getting the fight back in me and I know I can beat this. I will keep all of you informed, I will let you know how my appt. goes on Tues. and what the gyne has to say.
You are so right about statistics.
I'm starting to feel those positive vibes from all.
Sandy

Chestnut51
Posts: 16
Joined: Jul 2011

Hi it's me again. I will be going to my gyno Tues. and I have compiled a list of questions. Could you all give me some of advise on what questions to ask! I want to be very thorough.

Thanks
Sandy

wasil1216
Posts: 16
Joined: Jul 2011

Hi Sandy. Ive been checking your last post all day hoping to get some info as well. I hope some of the Ladies will login soon to answer some of your questions. Also i see your appt is tommorrow (mine too) and so i wanted to wish you all the best. ....hugs.....

Kaleena's picture
Kaleena
Posts: 1164
Joined: Nov 2009

Sandy:

Right now everything is going to seem crazy to you. Just hang in there. Also, you may be surprised if the surgery may be a month away. When you hear you have cancer, you want it out right away.

Take questions you want to ask your gyn on Tuesday. Don't be afraid to ask questions no matter how small of a question it is. Your gyne should refer you to a gyn/onc. So you will have to set up another appointment and wait again. Hang in there! Also, if you are not sure what your gyn/onc is suggesting, ask that you can think about it and/or get a second opinion. It is ok and a lot of doctors would suggest that.

Another thing, if you are to get chemo, the doctor may want to place a port. Don't panic about this. It is a simple procedure (out-patient), but it will save your veins and make getting treatment a lot easier. In fact, although I was done treating in 2006, I just had my port removed last week.

Also, if you are having a hysterectomy, ask what else they are going to remove. I had a total hysterectomy (removed ovaries, etc). At my Itstaging surgery, they removed my omentum?? my appendix and various lymph nodes. So you may want to ask about these things too.

It is good that you have a great hospital to go to. It should make all of this less stressful for you.

My thoughts are with you.

Kathy

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

Here are a few suggesions that may be helpful.

You want to have your surgery done by a GYN Oncologist so if you are seeing a regular GYN, ask for recommendations and then do some research on the ones suggested. Talk to others in your area who might know the docs.

Write down your questions in advance and take the list with you.

Take someone with you and have them write down the info the dr. says as it is impossible to remember everything they say. Then you can refer to it later if you are confused.

At this point you want to know what the surgical plan would be...what all will be removed? How many lymph nodes do they typically remove? What is the rationale of removing the lymph nodes if they appear and feel o.k? What are the long range repercussions of removing lymph nodes (lymphedema).

What can you expect in regards to your recovery?

What type of procedure does the surgeon use? Regular abdominal incision or the DaVinci and what are the pro's and con's.

How soon after surgery will you know the results...The TYPE of cancer, the Grade and the Stage. Many doctors do not inform their patient until the first post op check up which could be 4 weeks.....don't accept that for an answer. It is too hard to wait for the verdict that long. The report is actually available a few days after the surgery!

How available is he and/or his nurse to answer your questions? How does he communicate? Email? Phone calls?

Do not hesitate to get a second opinion....especially if you don't feel comfortable with the physician you see.

Once you find out the type of cancer, grade and stage, there will be lots more questions about the type of treatment, schedule, etc. But just take it a step at a time.

Let us know what type of cancer you have, grade and stage and I know the ladies on this site will have lots more suggestions on what to ask.

You will do just fine but it is overwhelming when you first hear the news. If you cursor down through the posts on this site you will find other "newbies" who have sought info initially and you read our replies to those folks...it may be helpful.

Best wishes to both of you! Will be thinking of you tomorrow!

Karen

wasil1216
Posts: 16
Joined: Jul 2011

What an outstanding list. thank you so much for taking the time for writing all that down. i have my notepad on my lap so i will be copying it all down.Reading the advice and encouragement from everyone who has gone down this road before me shows how much courage and strength one has despite this awful fear.....there is HOPE.

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

Wasil....I recall when I was first diagnosed! I was simply overwhelmed and kept clicking on sites everywhere trying to find the magic answer (and found out there is a lot of bad info out there). I couldn't get it all organized in my mind....what to do first, second, etc.

It is indeed overwhelming and this site was not very active at that time, unfortunately! You will find out what a strong person you are as you make this journey with the support of your family, friends and the women here. Indeed, there is a lot of HOPE!! I know you and Sandy can do it!

Big hugs to you both!

Karen

Bluebird Bush
Posts: 28
Joined: May 2011

Karen, I have been reading your posts and appreciate your sharing. I wonder if your neuropathy got better after you stopped treatment and if there is anything to do to help it. I have only had two weekly treatments of carboplatin/paclitaxel and already I can feel the neuropathy coming on. Thank you for all your suggestions and encouragement. Geni

Bluebird Bush
Posts: 28
Joined: May 2011

Karen, I have been reading your posts and appreciate your sharing. I wonder if your neuropathy got better after you stopped treatment and if there is anything to do to help it. I have only had two weekly treatments of carboplatin/paclitaxel and already I can feel the neuropathy coming on. Thank you for all your suggestions and encouragement. Geni

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

Geni,

Do not forget to ask your doctor if you can take L-Glutamine.
It helped me. I also did acupuncture, one treatment per week.
I was on taxol/carboplatin.

Good luck!

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

Geni,

My neuropathy became evident after my 2nd or 3rd treatment(my treatments were every 3 weeks). I started taking L-Glutamine but don't think I was taking it as often as I should have. I never had it very bad in my fingers...just my feet. By the 5th treatment my feet were really hurting and my balance was getting worse, plus I had also been having huge issues trying to keep my counts up. My 6th treatment was put on hold for several weeks and no improvement in the neuropathy or the counts, particularly platelets and WBC. SO, my dr.suggested that we not go ahead with the 6th treatment in view of my difficulties. He told me that the neuropathy could get worse up 6-9 months after treatment and at one year it would probably not improve anymore.

Mine did get worse and so I started taking Neurontin (gabapentin) but that didn't seem to help. I got some alph-lipoic acid, 600 mg. daily and started that. I do think that helped some for awhile but when it got to the point where I could not see any more improvement I quit taking it. I still have the neuropathy in my feet and it has stayed the same for about 2 years. My balance is certainly compromised.

Be sure to tell your Dr. and Nurse about the neuropathy as they need to know about this. They may recommend L-Glutamine, certain B vitamins, etc.

Let us know what they recommend?

Best to you! Karen

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

I had blood work last week, and I just got a call from my PCP, and he told me that I am anemic. No surprise!
He told me to take Vitamin B12, because he knows I am not eating animal products, and folic acid.

I went and Google both, and some of the deficiency symptoms are tingling and numbness in your toes and fingers, lightheaded, poor balance, etc.

So I was thinking that beside the obvious neuropathy we developed through chemo, the symptoms for these vitamins deficiency and NP are alike.

I am going to call my doctor to discuss my blood results in detail.
I thinking that maybe once I am not anemic anymore my neuropathy will get better.

raf
Posts: 2
Joined: Dec 2010

I am glad you reached out via this board. I did not and the fear and isolation just added to the panic. Once I found some boards it gave me strength reading about other surviors. It has been 1.5 years since my diagnosis and no matter how unbelievable it seems for you at this moment, you WILL be fine. As I look back, the 2 most important things I can share is 1- collect information and ask every question you can imagine from as many sources as you can. Knowledge is strength. 2- Get as many 2nd opinions as you need. We were in a panic and saw the gyn Onc recommended by my gyn. He seemed so good that we thought why see another but now I think we just needed a port in the storm. Later, we saw another Gyn Onc and the difference was amazing. We immediately knew he was the better choice.

Take Care!

Ladymonk
Posts: 13
Joined: Jul 2011

I was diagnosed with Stage IV endometrial ca a long time ago, it had spread to abdomen, chest, neck, and axilla (left underarm). Back then, in the 1980s, the survival rates for Stage IV were less than 5%. I had three young kids, was going through a divorce-

I had a lot of treatment, much of it pretty primitive in those days. Got a remission, had a flareup, more treatment, remission, flareup, treatment,, etc. This went on for nine years, until it just stayed in remission. It is much less intense now and there is a lot of "good stuff" out there to help with side effects.

The point is this: I am still here, cancer free, many many years later. YOU WILL BE, TOO!!! I've seen my kids grow, marry, and begin families of thier own.

Find the absolutley best place in your area to go for treatment, follow your treatment plan, and it does indeed help to take someone with you to take notes, because, trust me, you will not remember everything that is said, especially initially.

Although I am new to this community, I know that we are a group of supportive, caring fellow travelers. Keep us posted, we are here to uphold you and cradle you in prayer and support...

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

Your prognosis is very hopeful for us.
I had state 2, uterine clear cell adenocarcinoma, and just finished chemo.

Thank you!

HellieC
Posts: 445
Joined: Nov 2010

Thank you so much for posting and I am so glad that you are well after all you have been through. We need to hear the stories of survivors!
I am currently NED from my second recurrence (long story, but i wasn't even diagnosed with any cancer post hysterectomy in 2001!), so it is particularly heartening for me to hear that you had several flareups and came through it. I intend to follow your example.
If you feel like it (and if you can recall it all) I am sure that the ladies on this site wuold be interested to hear what treatments you have had, so we can compare the "then" and "now"!
Kindest wishes
Helen

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

Thanks so much for your post. What encouragement for me!!!!! I'm so glad you are doing well and still here with your testimony.

Many blessings, Mary Ann

california_artist
Posts: 850
Joined: Jan 2009

I am very sorry to hear that you are still having trouble with balance due to pain in your feet. I think of you as being just one big ball of happiness, makes me make a sad face to hear things are not just wonderful in your life.

Love and hugs, your friend,

Claudia

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

Hey, I am pretty much "a ball of happiness" (that image makes me smile!)....except I just have to watch my step as I can lose my balance easily. And my toes hurt more some days and some days, not so bad. The worse thing is when they get cold...

But, when I hear what so many on this site are dealing with, I feel incredibly fortunate.

Am planning a trip to the Grand Canyon in the Fall....will be careful not to get too close to the edge :-). My husband said he plans on holding on to me very tightly!

Hugs back at ya!
Karen

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