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My mother's uterine cancer

jflowers
Posts: 6
Joined: Apr 2010

Hello everyone. I'm new to the site and am looking for some guidance and education if anyone can help. Last week my 55 year old (56 tomorrow April 3rd!) mother was taken to the hospital because she had been experiencing flue-like symptoms and vaginal bleeding. They we first concerned about her kidneys because she was in renal failure and her creatinine levels were up around 8 when she was first admitted. They also knew at this time that she had uterine cancer.

They were not able to give her anesthesia to put a stent into her right kidney because she had eaten that day, but they didn't want to wait. They were able to get the stent in with out the anesthesia and they also cleared an infection in her bladder. The next day they attempted the left kidney but were still unable to. Finally on the third day they preformed a kidney block that lasted around an hour and were able to get it to drain. They took several liters of fluid out and today, almost a week later her creatinine levels are down to 2.8. We thought everything was going in the right direction. She had a colonoscopy scheduled for this comming Tuesday, and a total hysterectomy as well as the top portion of her bladdar were to be removed on Thursday.

I live in Florida and the rest of my family live in Northern Pennsylvania so my father has been contacting me and in turn I call the rest of the family for updates. My mom is an incredibly stong, no fuss no nonsense type of woman. She doesn't want visitors and up until today she hadn't talked to me even though under normal circumstances we talk every day if only for a quick minute. I know she wasn't able to talk because it would be too emotional for her and knew she would do it in her own time.

Today, when my dad called to tell my that they had found out it was stage 4 and that they were going to have to take out a lot more of her bladder than expected, I colapsed. I immediatley thought the worst and was cryining uncontrolably the whole drive home from work. Luckily I have an amazing boyfriend who is being very supportive and really helping me to think positively, but I am still having such a hard time. I have never had anyone in my family have cancer and though I've been trying to read up on it online, I am still clueless and am really looking for some hope.

As I said, my mom finally called me today and thank goodness because it was so hard not to hear her voice...I had this awful image of her in the hospital and I just couldn't shake it...until I heard her voice and she was that same tough woman I've always known. She sounded just like her self. She also told me that they're going to be moving from the hospital in Erie to UPMC in Pittsburgh because they have a better oncology department. She told me that she doesn't want me to come up right now or in her words "what are you going to do? Sit in an uncomfortable chair in here telling me how beautiful I look all day? I'd rather have you come up for a weekend after I'm out of here so you can wait on me for a change!" haha. Hearing her really brightened my spirits but I still would like some insight as to anyone else who has gone through, or is going through something similar to my mother.

Thank you and God bless.

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

Your mom sounds like a wonderful mother. I know when I was first diagnosed it was difficult to sort out my feelings and try and communicate with my family, especially my children. I was afraid and didn't want my children or my husband to know it. I found it very hard to express what I was going through. I sometimes wasn't sure myself. The worst for me was that I had no control over anything. I finally had to throw up my hands and give it to God. Turns out that was the best thing to do. I got a great sense of peace after doing that.

Your mom sounds like she has a great sense of humor. I know looking forward to something like a visit from my daughter really perked me up. Especially in the beginning.

I know this is difficult for you. I lost my mother to cancer many years ago when I was 12. When I got my diagnosis I decided that I would make it as easy on my children as possible by staying positive no matter what the news. That is the way my mother dealt with her cancer when she was 42. I am lucky and have lived to be 60. I am hoping I have a more good years left, and am hoping the same for your mom.

I will keep you and your mom in my prayers. Please keep us posted about how things are going. Have a blessed Easter. Norma

jflowers
Posts: 6
Joined: Apr 2010

Norma,

Thank you so very much for your words of encouragement and congratulations on your success! I gained such a more positive attitude after finally talking with her yesterday, and I'm hoping that she asks for me to call her today for her birthday...we decided that she will text me when she feels like talking and I'll call her hospital phone since she can't call out on her cell and can't call long distance on the room phone, that way shes not running to pick up the phone. I'm hoping to get to see her soon. If I had it my way I would be traveling up there every weekend, but she doesn't want me there right now and I respect that. She's not the type of person to say she doesn't want something when she really does so I know her feelings about it are true. I put my faith in God, as has our family and prayers are being said all over the country and across the world. What I finally realized is that I have to stop asking why and start accepting that God has a plan that we'll never understand.

On a happier, funnier note; in our conversation yesterday my mom told me that they brought a psychiatrist in to speak with her because "they think I'm nuts because I start bawling out of no where and even though I tell them I'm fine and not to worry they go on and worry" haha. This made me laugh so hard becuase in this my mother and I are so alike. We will start bawling over something at the drop of a hat or sometimes over nothing, just because a good cry feels good. And I could picture her there crying and laughing because no one knows what's going on! So they brought the psych in and she said he was acting all secretive covering his clip board and pacing and looking at her, then he says "Mrs. Flowers, do you know where you are?" and though she's trying hard to fight back laughter she says the hospital. Next is "o.k. we're going to talk about the big C word....Cope." At this she burst out laughing and says and I'm going to tell you about my big C word I cry! I cry when I'm too happy, I cry when I'm mad and I cry when I'm sad. I'm so happy she's keeping her spirits up and has her same old tell it how she feels it attitude.

Right now they are still scheduling the colonoscopy for Monday or Tuesday and after that they are moving her to UPMC because they handle cancer a lot more frequently than where she is now. She feels the worst because she knows if she would have gone to the Dr. like she should have she might not be this bad off. My mother never had anuals. I think the only time she went to a Dr. was when she was pregnant with me. I told her that she can't beat her self up. It is what it is and there's noone to blame. Now we just have to get it taken care of.

Happy Easter and God Bless

Cindy Bear
Posts: 566
Joined: Jul 2009

Hi there. I am so sorry to hear about your Mom and I hope and pray that she gets well quickly, and can get out of the hospital and back home. I can totally relate about her beating herself up. My mom was 78 when when she was diagnosed Stage IV uterine cancer. She, sadly, didn't win her battle and passed away at 79. But my mom was alot older than your mom and didn't have her feisty attitude so don't read anything into that Anyhow, she said more than once,'Why didn't I keep up with yearly exams." I told her mom, Pap tests are for cervical cancer, they rarely detect ovarian or uterine cancer. Secondly, the doctor, depending on skilled he was may have felt something during the pelvic exam but at that point her cancer probably would have been too far advanced anyhow. Do they even recommend Paps for women my mother's age? She was old to be diag. with uterine cancer. This was not a recurrence, it was a first diagnosis. My mom had a lot of guilt and we did too because we felt we should have really pressured her to go for second opinion. She had been complaining about hip/lower back/side pain forever and her GP wrote it all off as Arthritis. The other day, someone on another forum said to me,"Sorry to hear about your loss but you absolutely should have taken her for a second opinion. That's totally on your and her that she didn't go." That really shook me up. Yes she absolutely should have gone and I guess we should have pushed harder. That guilt I'll carry around the rest of my life. Woulda, coulda, shoulda. My mom was very old school and very modest. I don't think she ever fully understood her female anatomy , how it worked, the names of organs, etc. So she never really had a gynecologist. Maybe if she had, she'd still be with us. It sounds like your mom is in good hands and alot more on top of things than mine. She has nothing to feel guilty about it . It's not her fault she got cancer, nobody deserves it. It's not a punishment for something . I think it's just the luck of the draw. These boards are full of strong, caring, compassionate women who did everything right, ate well, exercised, went to the doctor faithfully and still weren't diagnosed until fairly advanced.
Take care and keep us updated on how she's doing. Happy Easter.

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Condolences over the loss of your Mom :(

Firstly, life can always be full of the "what if" moments....

As much as it becomes the children's job to take care of senior parents, ultimately there are limits and boundaries we can cross and from which we are blocked.

My Dad passed of Prostate Cancer at the age of 78, first diagnosed at age 76. Since that time, I have reflected on my care of him, how I should have pushed his doctor harder to take out the Prostate, work on my Dad to be more asserttive, etc. All energy which will serve nothing.

It is clear through your post your Mom assumed her own personal responsibility for her medical care. You were there for her when it counted. Take from that experience that you will be more vigilant in your own health care, that you will educate others. That is how we can respect our personal experiences and make our parents situation potentially be different for someone else.

I am sorry that poster suggested "it is on you".......they were out of line and evidently have not walked in your shoes.

Happy Easter and may your wonderful memories of your Mom be with you this weekend :0

Cindy Bear
Posts: 566
Joined: Jul 2009

Thank you. Yes I would like that to be her legacy.. that I try to educate family and friends to the dangers of this horrible disease. To be assertive and arm yourself with knowledge and to get that second or even third opinion. To continue to have Paps and Pelvic exams faithfully. My mother was old to be diag. with this disease. I am told the most common age range is 50-70. At least I think that's what I read. Yet the boards are full of women younger and a few older too. Cancer doesn't play by the rules. Sadly, we are never too old or too young to let our guard down.

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

I too express my condolences. There's nothing like losing a mom - All mother's die too young!!!

Shame on that poster. I agree with others who wrote that we all can second guess ourselves. I believe we all do the best we can at the time. Hindsight is always 20-20.

Ultimately we are all responsible for our own lives and choices - no one can control another person. Please be kind to yourself and not take on the burden of guilt thrust upon you by an ignorant person.

God bless you and yours - Mary Ann

Cindy Bear
Posts: 566
Joined: Jul 2009

Thank you Mary Ann and all the wonderful ladies on this board. I want to stress that the person who made those comments was not on the CSN boards at all. In fact it wasn't even a cancer forum . It was a sort of Current events board (Newsvine) where people from all over comment on different news stories. So it wasn't any of the wonderful people here. Yes hindsight is always 20/20 isn't it.

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

Cindy,

I feel your sorrow and hope you keep strong for not only yourself, but your beautiful mom. Oh so young as I'm a few years away from your mom. I've got an 18 yr old daughter and cherish each day with her as knowing it could end fast.

You should never look back on what you all did by not getting a second opinion. I didn't as my gut feeling told me my 2 oncologists were good and believed in the direction they were putting me. Gut feelings are pretty accurate, so read into them and believe!

Who said your mom was passing? No one...right? Well....keep the faith in God that she will pull thru this one. Don't give up, but do enjoy your time. We've got so much research out there that tomorrow they could have that miracle cure for our cancer.

Keep the faith!!!
Jan

jflowers
Posts: 6
Joined: Apr 2010

I'm very sorry to hear about your mother's passing. I also cannot believe someone would be so harsh as to suggest that it was your fault because you didn't get her a second opinion. I hope that you were able to get past that and not take it to heart. It seems our mothers are similar in that my mother didn't really know her body well either. She never got check ups, and if it wasn't for my father sticking to his gut feelings and taking her to the hospital himself who knows where we'd be.

After finding out that she did have stage 4 cancer my mother and father made the decision to move to a different hospital in the state that had much more experience with it. She got there yesterday and was supposed to have her colonoscopy today. I'm hoping to hear from my father soon as to how that went. I just keep praying to God that they didn't find anything there because I'm trying really hard to stay positive. I keep telling myself that my mother is so strong (by talking to her I wouldn't even know that she's so sick she hasn't faltered and says she feels fine right now, no loss of apetite yet either) and that there are people beating cancer every day, why shouldn't one of them be her? I'm trying really hard no to get too ahead of myself...I'm an extremely organized person so it is so hard to be trying to work through something that I have no control over and from day to day I'm unsure of the outcome.

cookie1948
Posts: 79
Joined: Feb 2009

I hadn't been on this site for a while. All of the women here were a great help and support for me for my mom. My mom had a total hysterectomy at 85 with UPSC. never cancer in the family before. she did not go for yearly paps, but had some bleeding so i insisted she go in. No chemo and onc said they caught it early. who knows really? anyway, it has been one year in March. she had surgery in March 09. so now she is 86 and doing ok as far as we can tell. she goes every 3 months for pap and ca125. I am blessed to have her this long and she figures any time she gets that is left, she'll take it. she has lots of stress in her life and has my daughter and a 5 yr old great grandaughter living with her. my daughter "lives" off of us sorry to say. I live next door and there was no room here, so my mom took her in 5 and a half years ago. big mistake. anyway, i take good care of my mom and am so glad i can help her and be next door to her and take her for any and all appts. Thank God. I hope my mom makes it another 5 or more years. haha
she is a troooper. just wanted to share this little story with u as i have last year with others. Hang in there and may God Bless u.
Linda aka Cookie

jflowers
Posts: 6
Joined: Apr 2010

Your mom sounds like an amazing woman. I wish that I was able to live as close while my mother is going through everything but I'm 1,000 miles away. Thank you for sharing your story!

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

You tell her she is right. There are people beating cancer everyday. I think I am healthier now than before the diagnosis. I feel great. I am hoping the same for your Mom. I had someone tell me when I was first diagnosed that cancer is no longer a death sentence. It is more like a chronic disease that is treatable. That gave me great comfort.

jflowers
Posts: 6
Joined: Apr 2010

Thank you so much Norma! I just received the phone call from my father that I've been waiting for all day...her colonoscopy and CT scan came back clear!!! Thank God thank God thank God. Now we know were just dealing with the uteris and what has gone to the bladder. I am glad that she's in Pittsburgh now. Her best friend lives there and has been her first visitor that she has allowed to see her besides my father! I'm so glad she was able to see her and my father had another shoulder to lean on for some support. She'll be meeting with Dr.'s in the next few days to figure out surgery specifics and treatment plans. I finally feel like she's starting to work her way through all of this.

cookie1948
Posts: 79
Joined: Feb 2009

Cindy, so glad to hear your relief about your mom's ct scan and colonosocopy. thank God. the women on this site are so wonderful and i can't thank them enough for their support, kindness and STRENGTH.
Cookie

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Great news on your Mom's Colonoscopy and CT!

Keeping her in my thoughts and prayers that treatment can turn this around!!!!

Hang in!

Laurie

jflowers
Posts: 6
Joined: Apr 2010

It's been a few days since I've posted and in that time things have changed so much! When my mother transferred to the more specialized hospital everything changed. They are now saying that she has cervicle cancer and are unsure of what stage, but that there is a massive tumor. They haven't found that it has spread to lungs or anything and they are going to be doing the pet scan tomorrow. She got released from the hospital yesterday, but because it is 8 hours away from their home they are staying at my mother's best friend's house who lives in the same city. Treatment has also changed. Her new Dr's are saying that instead of surgery they want to take a very aggressive approach to shrink the tumor. Starting Monday and lasting 5-6 weeks my mom will be doing 5 day a week radiation/chemo treatments. I'm so confused about this and not sure what to think...I don't understand how one hospital was telling her she had stage 4 uterine and wanted to do surgery right away and now it's cervicle and no surgery for right now. My mom sounds great and is getting used to her new diet she said she's glad to be out of the hospital and even more glad she can still eat pasta haha. We were talking about her rough road of treatment today and she says "cancer might be a B***h but what it doesn't know is I'm an even bigger B***h" haha I'm so glad that she feels strong and ready to fight this head on because I know she'll be needing all the strength she can get.

Have a wonderful weekend everyone.

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Sending thoughts and prayers to your Mom :)

Keep us posted on her progress!

Laurie

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

JFlowers....I can understand the confusion....cervical cancer vs. endometrial and a totally different treatment plan. If this hospital has had more experience, etc. I would go with their plan. Keep asking lots of questions. I love your Mom's fighting spirit..this will serve her well in this battle.

My thoughts are with both of you....Karen

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