Going for hysterectomy and hysterical! help
I hope the ladies on here can help and talk to me. I have had 3 d/c's in the past 5 years. Always have a thick uterus lining. Sometimes 9. Doctor said anything over 4 or 5 is concerning. I have had biopsies galore.
Symptoms were: postmenopausal bleeding. I am 59 years old. I have been using HRT patch for years.
I have had several transvaginal ultrasounds that almost always shows a thick lining. The doctor makes me take Provera (progesterone 10 mm) for 10 days. There have been times when the uterine lining has gone back to "tissue paper thin" and she has been happy with that.
Recently I gushed bright red blood. I called the doctor right away within 2 days. She scheduled me for ultrasound yes again! and I was bleeding during the ultrasound and then bled for 2 days. Back at her office again and she says I need yes another D/c! I freaked out. How many times am I going to go through this?
Went for D/C on November 17th. She comes into recovery room and says "I'm not worried." I waited 11 days for pathology report. I go into her office and she says "You have atypical cells and mentions the word "complex." She tells me I need complete hysterectomy. I lost it. What is going on? I asked her if it was cancer and she said "pre-cancer." She said I will have full blown cancer in about 1 to 3 years if I don't have the hysterectomy.
I agreed but now I decided to get a second opinion for it so I found a gyno/oncologist and he is making me WAIT. I am so upset. I have 3 more weeks just to see him. I WANT THIS SURGERY. I WANT THIS STUFF OUT OF MY BODY!
Comments
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So sorry
I'm so sorry you are dealing with this at holiday time...
Sadly because of the holidays a lot of medical stuff gets put off until after the new year.
is your first doctor a gyno oncologist or just a gynocologist? If she is not a gyno oncologist it might be best to wait the 3 weeks...I know once we determined I had cancer that my gyno said she wanted the gyno oncologist to do my hysterectomy "so it is done right". I know you don't have cancer yet (or it doesn't seem so) but it really might be best to have the best surgeon for your situation...
if you are comfortable with your first doctor can she do the surgery sooner?
Once I found out I had cancer I wanted it OUT OF ME ASAP as well so I understand how you feel...as I told my surgeon "it's not bunnies down there!" but I still had to wait over 2 weeks (while I was in huge pain) because of Thanksgiving and other scheduling issues but it was worth waiting to have my surgeon do it...
hang in there...I'm sure other ladies will have some more good insight for you....
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Thank you so much for
Thank you so much for replying! BTW, your hair is beautiful. I am blonde too
No, my gynocologist is just that, not a gyno-oncologist. It was my idea to see him because I really wanted to save my ovaries and she wants to take them away. Now that I have done my research and read some of Angelina Jolie's online diary, I have decided my ovaries should go too because my grand mother died of ovarian cancer at age 56!
So I suppose I am being so anxious, and I am taking tranquilizers too, Klonopin. There are times when I want to tear out my hair. I cannot believe this is happening to me but that's life, I guess.
I have never been super religious but I am sitting with my Priest at my church a lot and we pray and he is trying to keep me calm. So much to go through. I was diagnosed with a benign brain tumor years ago, had to fight that and won, and I have Graves' Disease too but am in remission right now.
I am worried the pre cancer will become cancer and I am worried about the surgery. I have read about bladders dropping and incontinence but I suppose that is nothing compared to having cancer. You ladies sound so brave and wonderful. Thank you for answering me.
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Thank yousaltycandy13 said:Thank you so much for
Thank you so much for replying! BTW, your hair is beautiful. I am blonde too
No, my gynocologist is just that, not a gyno-oncologist. It was my idea to see him because I really wanted to save my ovaries and she wants to take them away. Now that I have done my research and read some of Angelina Jolie's online diary, I have decided my ovaries should go too because my grand mother died of ovarian cancer at age 56!
So I suppose I am being so anxious, and I am taking tranquilizers too, Klonopin. There are times when I want to tear out my hair. I cannot believe this is happening to me but that's life, I guess.
I have never been super religious but I am sitting with my Priest at my church a lot and we pray and he is trying to keep me calm. So much to go through. I was diagnosed with a benign brain tumor years ago, had to fight that and won, and I have Graves' Disease too but am in remission right now.
I am worried the pre cancer will become cancer and I am worried about the surgery. I have read about bladders dropping and incontinence but I suppose that is nothing compared to having cancer. You ladies sound so brave and wonderful. Thank you for answering me.
thank you for the sweet compliment on my hair...I fought hard to keep it (cold cappin during chemo). My best friend claims it is half hers because she helped me every chemo session with the cap...
get the surgery...you do not want to have to go through this cancer! I wish like hell I had needed a hysterectomy years ago to save me from all of this...
it shot me into menopause (I was just barely pre-menopausal at 52) but it has not been bad at all...I just have a lot of fans!
My surgeon was good and the only problem I had Post surgery was that I developed a very large incisional hernia (my fault) so that got repaired this year...no bladder or incontinence issues with me...
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menopause!ckdgedmom said:Thank you
thank you for the sweet compliment on my hair...I fought hard to keep it (cold cappin during chemo). My best friend claims it is half hers because she helped me every chemo session with the cap...
get the surgery...you do not want to have to go through this cancer! I wish like hell I had needed a hysterectomy years ago to save me from all of this...
it shot me into menopause (I was just barely pre-menopausal at 52) but it has not been bad at all...I just have a lot of fans!
My surgeon was good and the only problem I had Post surgery was that I developed a very large incisional hernia (my fault) so that got repaired this year...no bladder or incontinence issues with me...
I have had natural menopause and for me, it's been awful. But she says I am post menopausal so taking my ovaries will not make a difference and as long as it is pre cancer, I can still use my Vivelle Dot patch which I would like to stop but my hot flashes are absolutely horrible. I sweat all night, change nightgown sometimes 3 to 5 times.
Sometimes I think that the patch is what got me into this mess in the first place but the doctor said "no." She said it's just my body. She said "there is something about you." And I made her laugh when I said you mean "Something about Mary? I guess she saw that movie too.
Good to know you didn't have a problem with incontinence. I can see how the bladder can drop after the uterus is removed. The doctor said my uterus is super small. I never had children so she said she can actually "slide"it right out my vagina.
I appreciate your advise. Probably better to wait for the gyno oncologist.
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waitsaltycandy13 said:menopause!
I have had natural menopause and for me, it's been awful. But she says I am post menopausal so taking my ovaries will not make a difference and as long as it is pre cancer, I can still use my Vivelle Dot patch which I would like to stop but my hot flashes are absolutely horrible. I sweat all night, change nightgown sometimes 3 to 5 times.
Sometimes I think that the patch is what got me into this mess in the first place but the doctor said "no." She said it's just my body. She said "there is something about you." And I made her laugh when I said you mean "Something about Mary? I guess she saw that movie too.
Good to know you didn't have a problem with incontinence. I can see how the bladder can drop after the uterus is removed. The doctor said my uterus is super small. I never had children so she said she can actually "slide"it right out my vagina.
I appreciate your advise. Probably better to wait for the gyno oncologist.
wait for the gyno oncologist...they are best trained to spot cancer so if there is some he will see it or take lymph glands that look "scary". Since you are pre-cancerous they can do it laproscopically----since I had cancer she had to open me up to make sure she saw/got everything and could check my omentum and lymph glands. See what he says...
bless your heart on the hot flashes...mine are not severe at all....I'm very lucky on that account. My best friend (no cancer) gets them really bad too...
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First the good news...
The good news is you do not have cancer. The other good news, while a uterus is nice it is not an organ you need to survive.
The surgery isn horrible. I had mine on November 17th and 4 weeks later feel pretty good. I begin radiation January 2nd because I had uterine cancer. So celebrate no cancer and have them take the ovaries and tubes as well especially with your family history.
I would suggest you find the best gynecologist/oncologist you can to do your surgery. They know what to look for and how to deal with it. You have been through enough. You want someone in there who can take care of whatever might be found. Suppose the gynecologist suspects cancer once you‘re open? Do you then start with a new doctor? I think your history warrants an oncologist. Don’t settle for any doctor, find one with high recommendations.
Good luck and remember you are worthy of quality medical attention.
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thank you so much!
Everyone here is so kind. I thank you from the bottom of my heart. The doctor I found is supposed to be the best we have here locally. He has been on the tv show "Second Opinion" and has a great track record, it's just the waiting that is making me so nervous! Hard to eat anything. I am actually nauseated.
And yes, EVERYTHING WILL GO. After doing reading and research and my mother's mother, she suffered so much. I am and have decided that all will be gone. I am just worried they will find something else!
As you say, if my regular doctor finds something "else" she would refer me to him anyway, so might as well start with the expert.
BTW, I am reading so much on here. I wish I could help with other questions. I feel bad about that but will continue to read and learn.
God bless all of you! My name is Karen by the way.
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Surgery
BTW, I had total abdominal surgery (opened up) and everything removed. 3 weeks later I went to Tuscany. Surgery was the easy part.
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It is so difficult to be patient
My history is not quite like yours, but by the time I was scheduled for my hysterectomy, I'd had 5 endometrial biopsies and I really didn't want any more. My biopsy showed complex atypical hyperplasia with areas suspicious for adenocarcinoma. My gynecologist was going to do the surgery but decided to send me to a gynecologic oncologist and I am ever so grateful that she did. I just felt like I was in good hands and I was. I did have cancer, but it was only Grade 1 Stage 1 and I required no chemo or radiation. And I waited and waited for that surgery because I also had breast cancer and that was surgically removed first. I waited for hysterecomy from end of April until July 1. I, like you, was a basket case and knowing now how everything turned out, it was perfectly fine for me to wait for the surgery. That was in 2010.
I hope you will wait to see the gynecologic oncologist and have a good discussion with him/her about why your ovaries will be removed and what will happen with the surgery. Go in armed with a list of questions and take someone with you for that second set of ears. If you don't ask a question, sometimes it won't be answered in the general discussion and then you'll finally think about it and fret some more. My hysterectomy was done robotically with everything taken - uterus, cervix, fallopian tubes, ovaries, and lymph nodes. I was fine almost immediately.
We all do what we have to so we can keep doing what we want to do. This WILL be behind you sooner than you think.
Best wishes,.
Suzanne
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Hot Flashes, Dropped Uterussaltycandy13 said:menopause!
I have had natural menopause and for me, it's been awful. But she says I am post menopausal so taking my ovaries will not make a difference and as long as it is pre cancer, I can still use my Vivelle Dot patch which I would like to stop but my hot flashes are absolutely horrible. I sweat all night, change nightgown sometimes 3 to 5 times.
Sometimes I think that the patch is what got me into this mess in the first place but the doctor said "no." She said it's just my body. She said "there is something about you." And I made her laugh when I said you mean "Something about Mary? I guess she saw that movie too.
Good to know you didn't have a problem with incontinence. I can see how the bladder can drop after the uterus is removed. The doctor said my uterus is super small. I never had children so she said she can actually "slide"it right out my vagina.
I appreciate your advise. Probably better to wait for the gyno oncologist.
I went through menopause at 51. I was diagnosed with stage IVb endometrial cancer (UPSC) at 61. About 3 years before my diagnosis, I ended up with wicked hot flashes and night sweats. My PCP prescribed an over-the-counter drug, which did nothing. The hot flashes and night sweats went away after my cancer surgery. I had a recurrence of my cancer this year. I had hot flashes again before that diagnosis, but they weren't as bad as the first time around. They're gone again now after surgery and chemo.
I actually had a dropped uterus ("cystocele") before my first cancer diagnosis. At times, I would leak a little urine if I coughed or sneezed. After my cancer surgery, my symptoms went away and haven't come back. I'm so glad because the pessary I was given for it was extremely painful to have put in and taken out to be cleaned. Like you, I never had kids. That's one of the risk factors for uterine cancer since your body is exposed to hormones without the break of a pregnancy.
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thank you so much!
Suzanne! thank you for your words of wisdom and encouragement. I was originally planning for my original doctor to do this surgery, but then thought I should seek another opinion and found the gyno-oncologist that I am waiting to see.
I already have a list of questions prepared and my husband always sits in too because sometimes I have a tendency to shut down and forget things. You know how it is when you are nervous? When I was told pre cancerous, I walked out of the office in a daze and forgot my handbag! So this is one big basket case here writing this as you say. I do have my tranquilizers and thank God for you ladies! I really don't have anyone to talk too about this. I never had children and I did read that was a risk factor. Sighs.
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Good to wait for gyno-oncologist
Hi Karen, I was misdiagnosed for six months with the symptoms of bright, gushing blood every 3 weeks or so, but no pain or anything else. My gyno thought I had a benigh fibroid, when in fact it was a growing tumor! When I found out what it was, I couldn't wait for surgery.
A very good gyno/oncologist surgeon removed all my reproductive organs, odmentum, and 27 lymph nodes! In his words, he "scooped me out like a pumpkin." But I was NED after that, though I still went through 18 weeks of chemo and 5 weeks of radiation. Since the surgery was abdominal and not transvaginal it was a little harder on me, but I just took it easy and took my pain killers (do whatever you can to avoid constipation though!). I felt fine after six weeks and got back to exercising. The biggest relief was getting all that cancer out of my body.
Good luck to you!
Kat
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Thank you Kat. God Bless You
Thank you Kat. God Bless You for your strength. Do you have a transvaginal ultasound prior to this "Fibroid" diagnosis? I have one tiny fibroid in the muscle of the uterus that is 3mm and it has not changed in any of my tests so they just leave it there. They are sure this is not what is bleeding.
This time was a few polyps with atypical cells.
Today has been difficult for me. I went to the gym and had a good cry. Husband doesn't understand why I get so upset but it's the waiting more than anything else. Sometimes I am sure I am losing my mind.
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Losing mind but hang on
I don’t know how we don’t all go crazy. Knowing there is an enemy within our bodies is mind blowing. Nothing prepares us mentally for this journey. I always say I’m on a train I didn’t buy a ticket for and I can’t get off until a stranger tells me I’m done. It’s awful.
When I’m in my head I try to think of someone or something I love. For me it’s my grandkids. I repeat their names over and over until I calm down. For you it could be a strawberry sundae or anything that makes you smile. Repeating it over and over breaks the cycle of worrisome thoughts. In this case there’s no way but through. Someday we’ll be on the other side and we can help someone else just starting the journey.
Take care as best as you can. Be kind to yourself, this is tough.
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thank you so much!
that's exactly what I TRY to do but it's not easy. My Priest tells me not to lose my sense of humor, which I still have. And listening to Ed Sheeran is good for me. Shopping is good for me. At times like this, I don't see how we can say "Happy New Year." I am afraid of what the new year brings.
I have my faith in God, In Jesus Christ, and have become somewhat of a born again Christian. Sometimes I think as my Priest told me "it's God's Will." Is that is the case, that shall be. I was already looking at my pre plan for my funeral. I have had these papers for about 6 years and thought I'd better update them.
I am so sorry for being so morbid, but I on the same token, am trying to be realisitic. I really don't know what I'm in for. None of us do.
May God Be With You and all of us here fighting.
Karen
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Praying for you
The new year will bring some answers for you and if you must battle it will be one you win...
stay as positive as you can...for me that helps a lot...
once you have the hysterectomy you can begin to move on and the good news is that if it's out it's out!
hang in there...you are in my prayers...
xoxo
Anice
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wonderful inspiration
thanks, Anice. I admire your strength. Throw some my way! LOL! I guess I'm hanging in there as best as I can. And as you say, this time of year makes it worse. My father died on Christmas 15 years ago. Seems like yesterday. I think I have that praying on my mind as well. You are a doll!
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you are stronger than you know!!!saltycandy13 said:wonderful inspiration
thanks, Anice. I admire your strength. Throw some my way! LOL! I guess I'm hanging in there as best as I can. And as you say, this time of year makes it worse. My father died on Christmas 15 years ago. Seems like yesterday. I think I have that praying on my mind as well. You are a doll!
One thing that cancer is taught me is that I am basically one badass babe of a warrior...I haven't had that much to face in my life--just the usual stuff like parent's divorce, losing parents (both were 60 when they died), and my own divorce...so tough stuff but not horrible) so when I got cancer I didn't know if I had the strength to face it and fight but I found it within myself...
I like to say we have been through the fire...beautiful china only becomes strong and beautiful once it has been through the kiln...the kiln burns and it is a double process---once to harden and once to glaze (I liken that to chemo and radiation) but once the china has been in the kiln it comes out shiny and very very strong. Before that it is just clay. We are like knives---we are forged in the fire to shape us and form us...the fire strengthens us but does not burn us...that is cancer...
you have it within you...you can do this! And you have a village of women here to give you strength when you don't think you have it...
last Christmas I had my first chemo on Dec 23...my kids (18 and 23 at the time) literally smothered me worrying about me...I could not wait to send them to their dad's so I could take a nap! It wasn't the best Christmas but in some ways it was still wonderful. We were together. I was getting cured. We enjoyed the day and said that Christmas 2017 would be one to be thankful for.
Find joy in the holiday...look to 2018 as a year you find your inner Wonder Woman....hopefully you will get your hysterectomy quickly and the surgeon will find no evidence of disease.
Put on those gold bracelets---you've got this! Be Wonder Woman...
xoxo
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