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hysterectomy resulting in stage 4 ovarian cancer

over two months ago, i noticed a lump in my abdomen and made an appt. w/my doc.  one week later, had a stat ultra-sound performed and was told that i had a 9.8 cm fibroid tumor on my uterus and two cysts on my right ovary.  i was informed that it would have to be surgically removed.  i educated myself with everything that had to do w/fibroids. never once was i given any idea that this could be cancer or something life threatening.  i was shocked the day of my hysterectomy when i was told that i have stage 4 ovarian cancer and worse case is that i only have one year to live. i am scared, angry, and reeling from the all the life changing adjustments i now have to make.  i guess what i need is a sounding board and open lines of communication with people who have experienced the same or can offer any hope and advise.
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Avatar universal
My mom's situation was similar...from a lump on her neck to a stage IV diagnosis in a week.  She's haveing her third chemo tomorrow.  Her CA-125 has dropped over 50% already, and her visible tumors have reduced; her extreme bloating has too. The gynocologist told her six months, most likely.  The oncologist said that chemo could extend that, and that no one could really predict how long the cancer would stay at bay if she responded to the chemo (she chose not to do surgery because she's 85 and her uterus was fine...everyone thought she had uterine cancer until the ultrasound revealed that the big mass the radiologist thought was her uterus was actually one of her ovaries/tumors).

Long story made short: after two chemo treatments, and the loss of her hair, she feels MUCH better than she did before the diagnosis.  Almost all of her troublesome symptoms are gone, thanks to the chemo and the pain meds (Duragesic patches...they don't knock her out at all). She's decided that knowing what is wrong, doing something about it, and living fully in that knowledge is the best approach, and I swear she seems 20 years younger already.

We have no idea how long she has.  Maybe six months, maybe four years.  She has no health problems other than the cancer. The point of all this babbling is to hope that you can live in the moment, in the place where you are, taking the treatments that are offered to you as opportunities.

My hopes and prayers are with you.
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Avatar universal
I just want to add my good thoughts and prayers, and my plea that this anger you feel will help you mount the fight of your life, starting with getting the best medical care possible, with the newest research available, which usually takes place at one of the top ten cancer centers in the states.  (If you live here?)Have a gyn/onc who has done this for years, and do not lose hope.
Everyone has a story about people beating the odds, and my best friend's Mom was diagnosed with terminal breast cancer (spread everywhere, bones, liver, brain) and she had everything removed, began a whole foods diet and exercised vigorously (she believed oxygen kills cancer cells, as Lance Armstrong believed)and her six months to live is now 30 years later.  And medicine was NOT as advanced as it is now.  She has not had a reoccurence.  She is strong and in her early 70s, but forever changed by her battle.  She says that for most people life is a buffet, but for her, every day is dessert.  She has taught me so much.  I went to her first when I thought I had cancer.
I am heartbroken that this is happening to you, but I do not want you to lose hope, just educate yourself, get the best team of doctors working for you, and never lose hope, just fight this as so many have before you, and are still here to talk about their journeys.
I will be thinking of you!
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Avatar universal
Dear lizhuegle,
     Bless you.  Bless you.  Bless you.  My heart and tears, and all of my being goes out to you with your diagnosis.  It was just 11 months ago, that my very active life came to an abrupt halt...complete hysterectomy, exploratory surgery, and the diagnosis of Ovarian Cancer Stage III C.  
     We, on this site, are here for you.  No dr. can tell you when you are going to die.  Please know we, that have been diagnosed with this insidious disease, really feel your pain, anguish, disbelief, horror, denial, sadness....it is so real, all the emotions.  It takes months to even come to grips with these different emotions.  And they change, and you have constant mood swings....it is the worst!
     Cry and cry and cry.  It is really OK  to cry.  I have been doing it for 11 months now.   Talk to people.  Research as much as you can.  Get Google Alerts for Ovarian Cancer.  Get 2nd  & 3rd opinions.  do whatever you feel you wish to do....THIS IS YOUR LIFE!!!!  Try hard, each day, to think one positive thought.  It will be hard, but keep trying to think positive about something.
       You are on my prayer list.
                         Careylyn
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Avatar universal
Please look into intraperitoneal hyperthermic Chemotherapy. It is a surgical technique in which they put the chemotherapy agent ten times as strong and heated (heated is also more potent)directly into your peritoneal cavity.  This is a new procedure that can be used for women with late stage ovarian cancer.

I was only a 1c, because my 13cm tumor burst into my abdomen so that is why I had the procedure performed it is really quite an advanced treatment.  

My doctor's name is Jay W. Carlson 616-957-3398(gynecological oncologist) who worked with Marianne Lange (surgical oncologist) to perform this procedure (Both in Grand Rapids, MI).  Dr. Lange has performed this procedure since it very first was used twenty years ago.  It is also widely used for colon cancer patients because colon cancer tends to spread throughout the peritoneal cavity. This procedure has also been performed since 1993 by Wake Forest University. You can actually see a video of the technique on a colon cancer patient under their video library on their web site. I don't know if this will work for you because I don't really know of your personal situation.

You cannot be correctly staged unless you also had the Ovarian Cancer Staging Surgery as I was told by my ob-gyn. This surgery is where they take your lymph nodes, omentum and biopsies to see how far the cancer has spread. Otherwise, it is a guess on your surgeon's part as far as what stage you are in.  Did you have the Ovarian Cancer Staging? Who performed your initial surgery a ob-gyn surgeon or a gynecological oncologist.

Please get a second opinion.  I got mine at the University of Michigan.  I am a rather passive person in which I don't generally want to hurt someone's feelings, it was hard for me, but it was my life that I was taking into my own hands. They gave me another option as far as treatment was concerned but I chose the IPHC.

Please don't give up. I will be thinking of you.

Danielle
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Avatar universal
Mariak: I didn't mean anything negative stating about receiving an insurance check. I don'tknow everyones finiancial situtaion, but if it's not a good one, having some extra financial help can help a real lot. I don't know what my father would have done if he didn't have that money. He would have suffered sick in a broken down bed & lousy surroudings. All I meant that IF YOU ARE in this type of situation, you do everything you can to help yourself. My father did not give up by no means. He fought it tooth & nail. He went for extra treatments that DID extend his life. I just vowed to myself that I would tell EVERYONE I knew about this benefit because on how much it helps the patient and the family.
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Avatar universal
Hey there...I haven't spoken with you before and I am definately not in yur shoes...I don't understand your doc's attitude...is he a gyn or a gyn/oncologist?  Why is he not offering any choices in treatment...I don't think I like this guy and I agree with newlifegal....you need a second opinion and you need it NOW.....find a good gyn/oncologist....have him review your reports and pathology....don't give up .....we will fight this right beside you.
Peace.
dian
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Avatar universal
PLEASE get another opinion!!!!!!!!!!! I agree it's necessary to get your finances in order, but so many people have been given that diagnosis and have survived. Maybe I'm being nieve,but i WOULD NEVER GIVE UP. Did you ever see the commercial for
Cancer Treatment Center of America? lOOK THEM UP AND GIVE THEM A CALL. Worrying about receiving a check???????????? Please get another opinion.Praying for you.Maria
Helpful - 0
135691 tn?1271097123
I am so sorry for what you are going through and understand your anger. I was led to believe all throughout my "journey" that I did not have cancer. I was even told before surgery that, at most, they would have to take an ovary. I believed them because they took a needle biopsy of my tumor and two different pathologists confirmed it! I woke up having a total hysterectomy, bladder and bowel ressection, kidney complications and stage 3c Ovarian Cancer - quite alot for a 26yr old (or anybody, really) to take in. I have a very hard time trusting Dr's now, as you can imagine! Do not concede defeat - there is plenty that can be done, and I'm appalled that they would give you a timeframe like that without even doing chemo or anything. I can understand if you've exhausted all your medical resources, but you haven't even begun too - why would they say such a thing? I would like to know as well, if this was a Gyne/onc who performed your surgery, because only a Gyne/Onc can stage Ovarian Cancer. Did they remove any lymph nodes? Oh my goodness, I'm sure you have so many questions. Please, if we can answer anything for you, don't hesitate to post. But for now, take what the Dr said, toss it out the window, get a second opinion and find out what your options are - you can fight this and win.
Becky
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Avatar universal
My heart goes out to you, I am so sorry you are going through this horrible illness. I have a oavarian tumor I am getting my left ovary removed 8/21 the doc said there is a tumor growing in my ovary and I am scared not knowing if it is cancer or not, the gynocologist said we won't know until we take it out and get the biopsy- before all this I had a chocolate cyst rupture from my uterus and bled 34 days the doc gave me a uterine biopsy, I never felt such pain -Thank God it was not cancer.    God bless you at this difficult time and maybe everyone who reads this can say a prayer for you to help battle this awful illness.
Quick story-my Aunt was told she had 6 months to live -that was around 30 years ago [she had a heart condition],needless to say she lived 25 years more! These docs are not always right- beore I went to this gynocologist 3 other docs wanted to give me a hysterectomy! He said your uterus is not enlarged and your biopsy was negative, he did say he may take photos of my fibroids on my uterus during the operation , I just hope they won't do a hysterectomy ater all! I hear of woman going in to get their ovary removed and end up having a hysterectomy!
We are here for you, I agree with the ladies you should get a 2nd opinion, let us know how everything goes.  
Keepp the faith!
Angelwings21
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Avatar universal
Hi there, first let me say that I am so sorry for what you are going through.  Going in for what you think are simple fibroids and then being told you have cancer is abominable.  I have experienced some of the same emotions you are now feeling.  I was initially misdiagnosed and then correctly diagnosed with stage IIIc ovarian cancer.  You do reel from the news, no doubt about it.  However, I want to tell you that no one knows how much time you have left and it disturbs me that you were given a time frame like that.  I want to encourage you that I know of many ladies who have lived years with stage IV, years with quality of life.  They are now looking at this disease as more of a chronic illness since there are many chemo regimes out there to try.  I'm sure some of the other ladies will be along to encourage you as well.  You have taken a good first step in dealing with this by coming into this forum.  We will be here to support you and help you as much as possible.  

Take care,
Christa
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Avatar universal
I am so sorry for your diagnosis. The only thing closest I experienced to that was what happened to my father who had terminal prostate cancer that spread to the bones. He just recently died in December. Dr told him he had 1 year as well. If it's any consolation, you can possibly help yourself financially at this time so you can make yourself & your family more comfortable. If you have a life insurance policy, most life insurance policies have a clause called a "living benefit" or and "accelerated benefit" that the insured can cash in ONE-HALF of the life insurance beneficiary amount if diagnosed with a terminal illness of 12 months or less. (some policies may vary) If your policy has this, they send you a form & a your doctor fills out & signs a form stating your diagnosis & life expentancy & that is sent back to the insurance company. They are extremely quick in responding to this request & after all paperwork is received & you usually can receive a check within 1 week. My father did this for himself & for us. He bought a new bed, furniture & was comforted that he the money to help him be comfortable while very sick. I know it's just mere money, but it does help ease some of the burden off of you. Take care & we are all thinking of you.
Helpful - 0
136956 tn?1688675680
I am so sorry that you are going through this.  I am not in your shoes but you have come to the right place.  There will be many that will be here soon to help.

God Bless

Angela
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