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Stage 4 Ovarian Cancer Prognosis if surgery before chemo is not an option?

Balance2001
Posts: 7
Joined: Oct 2010

Hello there,
I am new to this site. I feel blessed to have found it as we are seemingly running out of options. My mother-in-law has Stage 4 ovarian cancer. there we no signs of anything this past May, but in August her poor organs are covered.

She is unable to have surgery due to some very severe past complications with a relatively common colon cancer surgery. The doctors say that if she has the ovarian cancer surgery it is highly unlikely she will come out of it.

Her only option is chemo...she has started the therapy but things are not looking very good.
Has anyone experienced this type of scenario? Is there any guidance or advise you might be able to share.

My husband just got home from being with her...she is in so much pain...and we don't know what to do. We have been trying to figure out what we can do now to be with her as much as possible...but still trying to keep our business and family together.
He is so sad and feeling helpless...he just looked at me and said " I don't know what to do...my mom is dying in front of me and there is nothing I can do... "

If anyone has any insights into Ovarian cancer survival without surgery. Help on how to cope as care-givers. Ideas on how we can keep my mother-in-law as positive as possible and keep her hopes higher. Miracles do happen..I am a firm believer.

Thank you for any help....

leesag's picture
leesag
Posts: 624
Joined: Jan 2010

I'm afraid I can't offer much in the way of guidance for your situation, but I can offer prayers. I was "fortunate" enough to have IIIC with surgery before chemo. BUT having said that, my doctor told me that fast growing cancers (like mine and your mother in law's from the sounds of it) respond very well to chemo. The only guidance I have is to not give up. Chemo is rough stuff. Basically it poisons everything that grows fast, and the plan is for the cancer to go first.

A positive attitude is definitely a necessity for getting through chemo. My mother in law had metastasized breast cancer, (she didn't maintain her follow up schedule, so it was advanced when it recurred) and she taught me a lot about keeping upbeat. My prayers go out to you and your family!

Balance2001
Posts: 7
Joined: Oct 2010

We really appreciate you taking the time to share your insights. It is so good to hear that the fast growing cancer types respond well to chemo.
I am so sorry to hear that both you and your mother in law have had to deal with this thing called cancer.

How are you? Have you finished the chemo?
Our prayers are also with you and your family.\:)
God Bless

kellyh33's picture
kellyh33
Posts: 288
Joined: Jul 2010

First let me say I am so sorry you and your husband are going through this with your mother-in-law. It is a dreadful disease and very difficult to watch someone you love suffer with it.
My mother had three rounds of chemo and then surgery was supposed to remove the tumor. Well once they opened her up they realized the tumor is inter-twined with her blood supply so they were unable to remove it. That was Sept 3rd.
October 1st she resumed chemo and Monday she had her fifth round. She is slated for her 6th November 15th.
We are still hopeful my Mom will get her miracle too. The hardest part at the beginning was keeping her emotionally well. We still struggle with that too but everyday seems to be a little better than the last.
Chemo can keep them going, as long as the numbers that are supposed to drop continue to they will continue chemo. If the type of chemo she is having isn't working there are other types they can try.
If the chemo is making her incredibly sick then they need to try different meds to control that. Mom only found the right anti nausea pill last Thursday. Although it makes her drowsy it also keeps the food down and actually makes her hungry. It was the 4th anti nausea pill she tried. Mom's biggest complaint with the chemo was that made her very, very constipated. If that is the case with your MIL make sure she is taking colace or senokot. If she is very weak get her sodium levels etc checked. Mom just spent a month on a IV for 2 hours a day to make her stronger and it has helped immensely.
You have to be her advocate and if whatever they are doing for her isn't working then you need to make sure you are being heard immediately. Keep trying until you find what works for her.
If your MIL believes in God then ask a minister etc to come and visit the house. My mom had not been to church except for weddings in 35 years but having a man of God visit her really helped her to start to find peace.
When she talks about how horrible it is hear her and talk to her and then tell her all the reasons she is going to continue to fight and how proud you are of her. My Mom also said she wasn't going to do anymore chemo after her surgery. Let her know that is her choice and that you support her but remind her of the time she'll be giving up.
I wish I could be more helpful. If you want to e-mail me directly feel free kellyh33@rogers.com
Mom is Sam aged 67 and a ovarian cancer survivor. As long as she is still here she is a suvivor, not a sufferer or a patient but a survivor.
PS- Call the cancer society and they will match her up with someone around her age with the same type of cancer and the same prognosis who is doing well. Mom looks forward to her call every Wednesday from her angel Pauline also a survivor.

Balance2001
Posts: 7
Joined: Oct 2010

Thank you so much for your insights. This is all such good advice.
How is your mom responding?
You have a wonderful positive attitude and we appreciate you sharing your personal email as well.
I will also pass along how helpful your mom's cancer society match is and give them a call.

Are you able to share anything about the "little" things you have been doing to keep her spirits up? When she is feeling sad, weak, or starts to lose hope.

God Bless

kellyh33's picture
kellyh33
Posts: 288
Joined: Jul 2010

So sorry it took me so long to get back to you. Somehow i missed your response to my posting.
Today my mom had a really good day but each day is different. I try very hard to not focus on the disease when we are talking. Tonight when i was over there we started singing Elvis songs while she was lying down in her bed. It sounds kind of goofy but it was fun and it was nice to see her smile.
My Mom has had 5 rounds of chemo so far with the 6th scheduled on the 15th. She also has another CT scan on the 22nd. Mom's CA 125 counts continue to drop but they will never be low like some of the ladies are and that is okay. As long as they are dropping we know the chemo is working and that is what we tell mom when she is feeling down.
It is important to try to get your MIL out as much as possible even if it's for a 5 minute walk, contact old friends and ask them to visit her. Let them know that if they come there is no room for tears or sadness because it will make her sad.
I visit Mom every morning for 20 mins before i head to work and then i go back most evenings for a few hours. The cancer has definitely brought us closer together and for that I am greatful.
Mom does get down because she has lost so much weight but we remind her she now has to grow back into her skin and she will. We try to let her do as much as she is able to around the house so that she feels like she is still useful and she is. When mom is tired she is now finally willing to go to bed. This took a long time to convince her that it's okay to sleep when she is tired, it is her bodies way of fighting back and for her to gain strength. Just keep drilling into your MIL's head that she has to listen to her body and to shourt Stop when she lets the negative thoughts creep in.
Good luck and keep me posted.
Kelly

kellyh33's picture
kellyh33
Posts: 288
Joined: Jul 2010

So sorry it took me so long to get back to you. Somehow i missed your response to my posting.
Today my mom had a really good day but each day is different. I try very hard to not focus on the disease when we are talking. Tonight when i was over there we started singing Elvis songs while she was lying down in her bed. It sounds kind of goofy but it was fun and it was nice to see her smile.
My Mom has had 5 rounds of chemo so far with the 6th scheduled on the 15th. She also has another CT scan on the 22nd. Mom's CA 125 counts continue to drop but they will never be low like some of the ladies are and that is okay. As long as they are dropping we know the chemo is working and that is what we tell mom when she is feeling down.
It is important to try to get your MIL out as much as possible even if it's for a 5 minute walk, contact old friends and ask them to visit her. Let them know that if they come there is no room for tears or sadness because it will make her sad.
I visit Mom every morning for 20 mins before i head to work and then i go back most evenings for a few hours. The cancer has definitely brought us closer together and for that I am greatful.
Mom does get down because she has lost so much weight but we remind her she now has to grow back into her skin and she will. We try to let her do as much as she is able to around the house so that she feels like she is still useful and she is. When mom is tired she is now finally willing to go to bed. This took a long time to convince her that it's okay to sleep when she is tired, it is her bodies way of fighting back and for her to gain strength. Just keep drilling into your MIL's head that she has to listen to her body and to shourt Stop when she lets the negative thoughts creep in.
Good luck and keep me posted.
Kelly

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Has your MIL been seen by a Gyn Oncologist? If not, I would schedule an appointment with one ASAP. And even if she has, I think I might seek a second opinion. What part of the country do you live in? It seems that each area has one or more outstanding cancer centers - MD Anderson in Houston, Sloan Kettering in NY, Dana Farber in Boston, etc.

The chemo is intended to shrink the tumors but if she can have surgery at some future date, that would probably be ideal. Do you know specifically why the doctors think she might not survive the de-bulking (ovarian cancer surgery)?

Please keep us posted. There are plenty of caregivers here, as well as cancer patients, and we will all do everything we can to help both you and your mother-in-law deal with this awful disease.

Carlene

Balance2001
Posts: 7
Joined: Oct 2010

Hi Carleen..thank you for taking the time to share this information.

She can't have surgery due to lots of bad internal complications with her colon cancer surgery. It went from an pretty standard tumor removal - to her bowels flipping, dying and having to be removed...to spending 3 months in ICU with her belly open trying to remove all the infections with a sponge-type system. We were told she would not make it more times that we can count. They took so much of her intenstines that she doesn't have enough bowel or small intestines left to function on her own. So, she went in a pretty healthy 68 year old lady, and came out 3 months later with an ileostomy bag, with her nutrition coming from a daily 12 hour drip of TPN through an IV. She has been in and out of the hospital for the last two years, but has really be doing well.

She had her check up at the Rochester - Mayo Clinic in May and all was good. Then in August rushed to the emergency room is extreme pain. She went back to Mayo and they found a baseball size tumor on her ovary and the cancer had spread to her liver and spleen.

The Onconlogy department is said to be one of the best of Ovarian Cancer. After they reviewed all her records and took a look themselves...her insides have fused together in certain areas and they believe she would not make it out of surgery..and if by chance she would, then not out of the hospital.

We are looking at going to the Oncology dept at the University of Madison WI soon.

If you have any thoughts on how to help her cope, feel more comfortable, ideas of things we can do to help her smile...and..as importantly how to help my husband - he is struggling so terribly....

A lot of information today..I know. But it gives a bit of history.
Thank you :-)

-I love you pic too:-)

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

Welcome, but sorry you are here. I've been caring for my mother for almost two years, and she is losing ground now, getting increasingly uncomfortable. We've started working with a palliative care physician, which is great. Yesterday he talked, touched, and listened to us for an hour, and believe me, this does not happen with other types of docs!

Please come visit in the caregivers forum as well as here. Miracles fueled by hope do happen, but sometimes God has other plans and it's up to us to honor whatever comes. Mom is aware that she is on borrowed time, and there may not be much of it left, but we are accepting this in small bites.

I hope you and your husband can spend more time with his mother. Although I'm my mother's only daughter so I do the intensive caregiving, calls and visits from her sons are soooo special. Ditto cards, flowers, from anyone, anytime.

Balance2001
Posts: 7
Joined: Oct 2010

Hi there,
We are happy to have found all this support, is so unfortunate that such a terrible thing that has brought us all together, but are very thankful.

I so much agree with you - about miracles happening. That my mother-in-law is still with us today is a miracle:-)

How do we even start to address the fact or come to terms with the fact that she may be on borrowed time. I don't know how to get my head wrapped around that thought of her not being here. Deep down we know every moment of life is precious and a gift..but when you can start to see the end (which is inevitable for all of us-I know) it seems easier to live in a sort of denial place...believing that she will be ok - and that is it.

How do we start to have the conversation about what could be the result-that thought of losing her - first between me and my husband - and how to deal with such a thing. If we talk that way..it makes it too real. If we keep in my little "denial world" things seem manageable.

I still have full faith that this chemo treatment will help and with all of our prayers groups praying for her...I believe in a miracle. That is how I am coping...

Does this sound strange?

Any insights on how you are dealing with all of it. When you know you are on borrowed time..what do you do? Especially if you are so tired and weak - how do you enjoy what time is left?

I am usually a very positive person, and we are very strong, positive, and happy when we are with her, but in our alone time - it is hard to know which way to turn.

Thank you for "listening"

what are the next treatment steps for your mom?

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

My mother has no more treatment options and was told in August that the maintenance chemo she's on will buy her time, but not a cure. Like your mother-in-law, Mom is having pain issues, so I took her to a palliative care dr. this week (there is one on staff at the cancer research center where she's treated). She's now on a pro-active pain regimen with oxycontin, to actually build the dosage so she can go on time-release formulas, which are too strong to take until you've acclimated to the drug.

I have had much longer to get used to all this than you, and so has Mom. We talk about death a little, when she brings it up, and I try to reassure her that one day she will go to sleep and wake up in heaven. As she becomes more uncomfortable, I see her faith serving her more and more.

This is a process, you know, and I became more confident as Mom's first lieutenant after reading Final Gifts by Maggie Callahan. Most libraries have it.

KarynH's picture
KarynH
Posts: 32
Joined: Jun 2010

My mom also has stage 4 ovarian cancer that is inoperable. She will turn 70 next month. After a few months of being misdiagnosed, we also found our way to Mayos in Rochester. This was in August of 2009. Her cancer was seeded all over her pelvis and abdomen. She immediately started carbo/taxol and avastin was added to this regimen 7 months later.

Fast forward to 1 year later… We just returned from Mayos and her CA-125 is now 44, with just 2 little spots remaining. She will now remain on just the Avastin along with an oral Cytoxan indefinitely. We’ve been told all along that there will be no cure for her, but we will manage it and give her the best quality of life possible.

Like your mother in law, she also has other issues. She developed a blood clot early on, and also has epilepsy.

At the beginning of her diagnosis, I felt so overwhelmed and helpless.
I started concentrating on helping her feel better, both mentally and physically.
She had a stack of cards from her lady friends. I encouraged her to write a thank you note, or call. Her friends were wonderful helping her through the worst. I found her some good movies to watch. We started “game night” where we just got together and played a board game. I found a CD called Relaxation. This really helped her to fall asleep when she was having trouble. You can even go to the library and get those “books on tape” as I call them. I also found an armchair yoga DVD that we did together when she was feeling better. You can help with her shower, keeping her medication straight, Dr. appointments, rubbing lotion all over her legs and feet.
Soon the overwhelmed and helpless feeling turns around and you have a whole new relationship. As bad as cancer is, it has brought us both to the peaceful feeling between us.

Like Lisa said, please take care of yourselves too. The stress you endure really does a number on you.

It has been a long, long year, but I can tell you that it is possible that things can get better.

-Karyn

Balance2001
Posts: 7
Joined: Oct 2010

Thank you for giving us hope. I talked with my Mother in law about your experience and say her face light up. It has been a while since I saw that.

God Bless you and your family - and thank you...

Lisa13Q's picture
Lisa13Q
Posts: 683
Joined: Jul 2009

When my mother and sister and I finally found out that Mom had OVCA, we went to the gyn/onc. We, too, also found out the situation was such that they could not do surgery. Then she went on chemo and as the surgeon said, "it melted the cancer away"...they did do a debulking a few months after 3 chemo treatments. She had more chemo. It has been one year and 3 months. She does still have cancer in there but we're "managing it" with a drug called doxil. It's not been all fun (duh), but we get her for another x-mas, and maybe more....I hope and pray. She is a fighter and that has truly helped. What I have learned, as a caretaker, is that you will adjust to a "new normal". Things have changed completely, but it's not a terrible change (like I thought at the beginning). My mother and I have developed a new relationship....I have made new friends on this board....I have a different perspective on things....So I would also suggest that you take are of yourself as well, and know that you will adjust and you all can live with this dreaded disease....Please keep us posted....Lisa

Balance2001
Posts: 7
Joined: Oct 2010

Hello Lisa,
Thank you so very much for sharing your situation...it gives us great hope.
I hope you are all still doing the best you can and hanging in there:-)
Please also be sure to keep us posted, ok?

God Bless,
Tina

azgrandma's picture
azgrandma
Posts: 577
Joined: Feb 2010

i will pray for her and also the family.
my sister that just passed, operating was not an opption for her either as it had spread to other organs, the cancer in her lung was wrapped around her blood vessles making it difficult to talk and breathe, but there was not alot they cound do.

i hate this disase so much i have already lost 2 sisters to it, i hope and pray God keeps my only sister safe from this horrid disease.

we are here to listen ifyou need to talk and to pray

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