Im 43 years old and Last Tuesday i got that phone call and i have
adeno carcinoma the endomeitroid type (uterine Cancer)
Im in Shock!! Im freaking out, For the past 10 years i have had abnormal bleeding all the time, never had a reg period. Was dx. with fibroids as well as the fact that im hypo thyroid. Well finally they decided to do a biopsy in office procedure and it came back positive as uterine cancer. Now im scheduled to have a total radical hysterectomy on friday july 7th, they are taking my ovaries, flopiean tubes, lymph nodes, uturus, and cervix,.... Im a basket case... Im terrified of the the surgically induced menopause on top of everything else. Back in 2000 we tried to have a baby, and i was not able to conceive, I was put on prevara and then clomid and still never got preg. We gave up and i just dealt with the constant intermitent bleeding.
Im at a total loss.... she will not know how far along the cancer is until i have my surgery.. So far she said she feels it is grade 1 and well differeiented. The treatable kind? But she doesn't know if it has gone into the deeper muscle of the uterus or if it has invaded other areas outside of the uterus.... IM freaking out and im so stressed out. I cant stop crying....... Some people tell me i should keep my ovaries, but my doctor said that uterine cancer can come back on my ovaries.... Im so depressed and i am having a hard time just dealing with the hour to hour of each day as my surgery date creeps apon me.
Also im terriefied of the anstheasia as back in sept i had my gallbladder out, had a reaction to it and i found out that i stopped breathing and they had a hard time getting my heart rate up. In 2001 i had emergency spinal surgery, so im told that i may not be able to have an epidural rather then the generl ansthea because of my spinal scar tissue or what ever that is there now at L5 S1...... Any insight to any of this i would greatly appreciate as well as prayers.
First of all, I want to say I am sorry. I well understand the horror of what you are going through. Last September, during a hysterectomy, the surgeon discovered cancer during my operation. I was diagnosed with Stage III-C Endometrial Adenocarcinoma. I had no insurance to boot to add misery of having this diagnosis--but believe me, God is bigger than all of this.
Its tough, and its a hard road, but you can BEAT this! Karen, I was glad they took my ovaries out, and its my opinion, you should do the same. They took out my ovaries, uterus, cervix, and 13 lymph nodes in that area. The cancer had spread through the deeper parts of my uterus, and went into the cervix. I think if cancer is found in that region, you should take the ovaries out--I would not leave them in there. So far, as I went right into menopause I have experienced no problems--no hot flashes either. I thank God my surgeons knew what to do the day they discovered this cancer, and that they took out what they did. Later, the biopsies after my surgery revealed the grade and stage of the cancer.
Karen, you can beat this, believe me. With God and through medicine, you will win this! I was just tested two weeks ago, NO CANCER!!! In addition to the hysterectomy when the disease was discovered, I had 30 rounds of radiaiton and then an internal inplant . In the midst of all of this, I had to have two surgeries for spinal fluid leakage as well. Its hard to go through this and its frightening. Just a few weeks ago, I had a mammagram--three different slides showed a large white area on my left breast, and I thank Jesus, when I went back for further testing it was gone!! This is a winnable war Karen, so do not give in or concede to this thing. FIGHT it with everything you got! Karen, we will be praying for you. Please keep me posted on how you are doing or just to talk.
I have been trying to find someone else to talk about with this and its so hard to find someone that can relate to all this.. Friday is creeping up so fast and im so so scared. They are taking it all out... Even my lymph nodes. I don't understand how they can grade my cancer if they haven't done any tests besides the uterine biopsy.. She said its a Grade 1, well differentiated adeno carcinoma of the endromeitriod type. But won't know how far it has gone untill i have the actual surgery. Im very afraid of the Chemical or surgical menopause, But then i was told that i may already be in ovarian failure and i may not have any other symptoms with surgical menopause. I get night sweats now already on occasion and heart palpatations on occasion for the past few years.
Im so upset about all this, because ive been seeing this obgyn doc since 1993 for unexplained uterine bleeding, had a few ultra sounds, Tried to get preg in the past, and even was on clomid for a short while, but never got preg. I don't understand after all these years why she never bothered to even test me for uterine cancer, and she even turned me down when i asked if i should have a c -125 blood test. Anyway, on a whim she decided to do the biopsy in office, and i even waited over a month before i had the procedure. On top of all that i had to have a breast biopsy last week because they found a breast tumor the size of an egg. Which thank god was benign..... My fear is that i have no idea how long ive had this cancer, and that i could also have been treated with progesterone years ago to prevent this, when i should have been dx. with endometriosis... And was never even told i had that. Its like she just let me bleed for the past 10 years and made me suffer in silence with me thinking there was nothing i could do about any of it..
in 2001 i had emergency spinal surgery, after a fall, which has left me disabled with left leg weakness and where i cant stand for longer then ten min intervals.... And ive learned to accept my disability and live with the pain. Then 10 months ago, i had to have my gallbladder removed, after my first gallbladder attack ever... So life has been a living hell and im having a hard time having faith and belief in anything at this point in my life.
This shock of having cancer has me freaked out, I feel numb inside. I woke up in the middle of the night last from crying in my sleep after having crying in my dreams.... i sat up and realize it was a dream, and that i was crying in my dream and it spilled over to waking up crying. Then i just sat up and cryied for a half hour.
I feel like i have no one to talk to about any of this, my family and friends are avoiding talking about it. Its like i have to tip toe around eveyrone so as not to upset anyone around me. Its like i have to hold it all in to keep everyone else from feeling badly. Im at the point where i don't even want to be around my family or friends because of this. And i need someone to talk to. This is only my 7th day after finding out i have cancer and it sucks so bad.. I hunted all over the internet to find a real time chat room to find someone to talk to, and just found crappy chat rooms at yahoo where no one was even serious about real issues.
I would so very much like to hear more about your experiences, what you went through and any suggestions to make my post surgical experience easier.. What i should have at home ready to make it easier since i do live alone. Any help or suggestions i would really appreciate to hear.
As I read what you wrote, I realize how our experiences are so similar! I am also 43 years old, already had medical problems, and went through bleeding for several years. My gynecologists (went through two of them) never tested me for cancer, and when I first started going, I was already anemic from blood lost! It is no telling how many years I had the cancer either! I wish gynecologists would take certain measures to rule cancer out when women are having chronic bleeding, as well as excessive bleeding to the extent of being anemic! I had ultrasounds which showed multiple cysts and firbroids. I had to have two separate emergency blood transfusions (about 8 pints) before I could even have the hysterectomy. I still quite upset about it, and I can understand where you are coming from. My gynecologist also prescribed Provera, which only helped a few months, still I bled every single day for about two years. The years before that it was excessive, but I did not bleed every day.
Karin, you are gonna have to get some people to help you physically when you get out of the hospital. Just having a hysterctomy is tough enough, let alone being diagnosed with cancer. From what I have read, and been told, it takes about 6 to 8 weeks to recover from having a hysterectomy. It took me longer (I still have not regained half my strength) to be able to drive and do some basic things around the house. I was told when I left the hospital not to lift up no more than a few pounds. I was in pain for some time as well, although I found mega-doses of Ibprofen sufficient for it. If I were you, I would start preparing some meals or dishes to freeze, so you can easily microwave or heat up easy meals. They will likely provide you with an instruction sheet at the hospital about things to do or not do, but I can tell you, for the next month its going to be difficult to move around. Take care of any bills or pressing paper work now before your surgery Friday.
Karin, I understand the fear and numbness. It's shcoking and unless someone has gone through it, or been diagnosed with a life-threatening disease, they can only sympathize, but not truely understand it. If it were not for my faith in God, I dont think I could had made it. The first thing I thought was I might die. However, many, and I do mean MANY people BEAT this disease! You purpose in your heart that you will be one of them. My mom knows a woman at her church who was diagnosed with uterine cancer years ago, and this woman is heading into her 90's.
Karin is there anyone in your family who can come stay with you for a week or so, to help you out? If not, will your medical insurance pay for someone to come out and help you around the house, even if for a couple of hours a day? You really do need someone to help you out physcially; ask someone in your family if they could help out. And Karin, I understand about how your family does not want to deal with it--my family did not want to deal it with either. They tried to run from it, but I had to rely on them to bring me to some of my treatments, and they found they could not run from it anymore. Even still, they hardly talk about it, because they really dont know how to deal with. This disease is tough on everyone involved.
Before I forget, Carecare.org is a neat organization worth investigating. They offer emotional support and financial help, as well as the latest in medical news regarding various cancers and their treatment. Here is the url: http://www.cancercare.org/ . I also got helpful information from The American Cancer Society, and they may offer transportation to take you to medical appointments and treatment.
As far as my menopause experience (by the way, forgive my spelling throughout) its been very postive. Before the hysterectomy, I was having hot flashes, night sweats, and heart palpitations. Not once, since last September, have I exhibited any symptoms like this, nor am I on any hormone replacement medicine. I also meant to say it was not until they took out the uterus, nodes and etc. that they were able to stage the cancer, which was diagnosed as Stage-III-C. It was a late stage.
Karin, I want you to know you are in my prayers. Both my sister and I will be praying for you, and believe me, you can get through this. Its hard, I will not lie to you, its very hard. Emotionally and physically, but uterine cancer is a treatable and beatable disease. You feel free to write any time, about anything or questions. I will not be able to post most likely until next week, but write me back. Let me know how your surgery went, and how they plan to treat you. Take care now, and start believing you will come out of this!
Oh Rhonda Thankyou for making me not feel so so alone! I have a few friends that are going to come over after my surgery and my sister too,
Ive already cleaned my house, washed all the clothes, bought paper plates and cups, and we have a local store that delivers groceries and brings them right into the kitchen and puts them away too. A friend is going to cook meals and bring them over to my house. So i think i have most of the bases covered. I think ill prob even sleep in my rocker recliner because its so comfortable, I don't think ill be able to lay flat because even after my gallbladder surgery i couldn't sleep in my bed.
They said i have to be on a low residue diet, and i have a list of what i can and cant have. My biggest fear is how far along the cancer is.
Ive paid all my bills, and took cash out of the bank and gave it to my sis to hold on to till i get out of the hosp. I don't know what else i can do.
I have medicare and im disabled due to my spinal injury, so ill have to find out if i can get help via medicare with home visits.. That would be great to have someone come and help me here at home.
When im out of the hosp i will reply.. Still cant get any of my family to talk about it... Went to a family bbq today for the 4th, it was so hard to put a smile on my face, and will my entire family there, (about 50 people)
Only one person even brought it up and asked how i was, before i could actually say how i was she just said be strong. Thats it..... I feel like i have the plague!!
Thankyou for your support, I will post again after my surgery as soon as im strong enough..... Thankyou so much for your prayers.
You said you were a more advanced stage.. How are you?
Did they get it all? Are you cancer free?
Just checking back. I imagine you are still in the hospital, and I want you to know you are in our prayers. Whenever you are able (and that may be for a while), let me know what your doctors are saying and how you are doing.
I am doing ok, its been slow going to regain my physical strength. I just recently tested for cancer, so far so good--there are no signs of cancer! I am grateful to God, because being at such an advance stage I didnt know what to expect. I am having a new problem however, stiffness in my joints. I read radiation can cause problems such osteporosis-- I hope this is not the case. I switched over to a different oncologist, so I go to see her in August. As of now, I see an oncologist for an exam every three months--and my understanding those exams will be at that frequency for the next two years. After that, I think it goes to every 6 months for the following three years.
Let me know how you are doing whenever you can, and whether they are going to do chemotherapy or radiation, perhaps even both. There can be some negative side effects such as nausea, particularly if you receive radiation to your abdomen or pelvic area. I know you must still be in shock-- its a frightening and overwhelming ordeal. You hang in there. You will get through this!!! I hope to talk with you soon.
I wish I could offer some more support other than that you are in my prayers however I got the same news today.
WOW I am stunned I never thought I would be writing this. I have had some female trouble lately. Well I ended up in the ER on 8-12 and they did a D&C 8-17. I got those test results today.
I have Endometrial Cancer. I am waiting to hear from the Uof I hospital tomorrow about a consultation.
My GYN was so stunned by the results. He said that normally when there is Cancer there is a lot of tissue but there wasn't and the small amount he did remove was cancerous. He said there was a lot of blood present but not a lot of tissue and that they have a 90% success rate with a hysterectomy.
He said he normally doesn't see it in someone my age. I am 36 but that since I have Polycystic Ovaries it puts me at a higher risk.
I hadn't had a natural period since going off the pill when I got married in 1995. I had to have provera. My reproductive endocrinologist was happy if I had 2 cycles a year which I did.
I started having spotting in April and it just kept getting more and more until finally on 8-9 it was so bad. I spent two days in bed and ended up in the ER late Friday night early Saturday 8-12.
I am not sure what to feel at this point. So if you pray and an add me to your prayer list I would truly appreciate it.
I am hoping that the hysterectomy will be all that is needed and that I will be able to do some fall craft shows as I am self employed.
I too am in that stage where I just don't know what to do. I am numb but want to cry and scream like a baby but that won't do any good.
Over all my family has taken it well and are very positive and supportive. Now I just have to tell my husband tomorrow as he was at work and worries so much it is just better for me to wait til he is home and has the weekend off of work.
If you can update us on your progress it would help me a lot.
Rhonda I can't tell you how much your posts to Karen mean to me. It helps knowing there is someone else out there going through the same thing.
I am hoping I heal as good as my mom did. She had a hysterectomy a few years back no cancer and she went back to work 10 days after having the surgery. So I am praying that I will have her resiliance.
My heart goes out to you, and I am so sorry for what you are going through. I just want you to know you are in my prayers, and I will be praying for you to have a speedy recovery as well.
I think one reason I had such a hard time with my hysterectomy was because the late stage of the disease, and I had other medical problems in addition to the cancer. I have read of some women recovering from this surgery in a couple of weeks---however, they will likely advice you to do no heavy lifting for some time. Your age is atypical according to the statistics I have read, as it is with our age of 43. Hopefully, being so young, it will give you edge in your recovery. Please keep us posted here on your prognosis, treatment, or anything else you want to talk about! This is a hard thing to go through, and know you are not alone in this. Fight this with everything you got, and BELIEVE you will come through battle victoriously. May God grant you strength and healing.
**Karin, hope you are doing ok...my prayers are still with you as well