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Is it worth it?

Vicky DeRosia
Posts: 17
Joined: Oct 2010

Sorry I posted this on Expressions Gallery so if you had read this already forgive me .I think I found the right place to put my question.My mother was diagnosed with ovarian cancer in Sept.2010 she is 82 years old. She has had fluid removed from abdomen and has had her first chemo with more to follow every 21 days.I asked her Dr. if she has PPC he is not sure,and also not sure how bad the cancer is until he does surgery ,which they may never do.Her kidneys because of the tumors has quit working so they put in stints and still her kidneys are not filtering right.The stints have to be replaced in 3 months.She has had infection in her blood ,white blood count went up to 64000 and the drs.has told us at that time to contact family members because she would not make it an other day.She has thrush in her mouth.But she is doing a little better, okay quit a bit.Just not the same as before Sept.She has a large mass in upper abdomen and some small ones in pelvis area they also state that she has some lymph nodes affected.She is stage 3c maybe 4 her c125count at the first appointment was 1000.I am so worried with her age and not knowing if they will ever be able to debulk after chemo.We went to U OF M for second opinion they agreed with her Dr..So now what? She wants treatment she has hope.I support her in all of her choices,although it is not easy.But putting her through all of this is it worth it?

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

If it was my mom, I would say no, due to it being stage 3c/4 and her being 82 and the long difficult road ahead. Let her enjoy the time she has with out surgery and chemo. I wish you the best

Vicky DeRosia
Posts: 17
Joined: Oct 2010

Thank you it is so hard to take her hope away.I am here to support her and her choices.I just wish the doctors could be honest and let her know the long road a head.Believe me I am very optimistic in general.But this is really tearing me apart trying to be cheerleader and daughter.I want the best for my mom and would not hurt her in any way.

grandmafay's picture
grandmafay
Posts: 1621
Joined: Aug 2009

My mom is almost 92 and has been dx with endometrial cancer. She also has dementia. The oncologist told my sister that the treatment would probably kill her. So we made the decision not to treat. Our situation is very different from yours because my mother is unable to make her own decisions due to the dementia. Also she has an advanced medical directive that states that she does not want any treatment if she has dementia which she had signed while she was still thinking clearly. If my mom was able to make her own decisions, I would feel like I needed to support those decisions. My husband passed away a little over a year ago following a six year battle with colon cancer. If I had been making the decisions, I would have probably favored stopping treatment a couple of month before he made that decisions. Yet I supported his decision to try one more round of chemo. He lived longer than anyone expected because he chose to fight and buy as much time as possible. He knew that he was just buying time. I cherish the time we had. He left this world on his terms. It was his life and death and I felt he had the right to make his own decisions. I am not in your shoes, and I can only tell you my story. Only you will know what is right for you and your mother. Take care, Fay

Vicky DeRosia
Posts: 17
Joined: Oct 2010

Thank you for sharing your story it has helped me to see another side. I will keep you in my prayers.You seem to be very strong person.Even when you know what is right it is not always easy to do.

Cindy Bear
Posts: 564
Joined: Jul 2009

Hi Vicky so sorry to hear about your mom. Have you tried posting on the ovarian boards?for more insight. I know several women there have been diag. with PPC. Honestly, at her age and with the level of disease she has, If it were me, I probably would opt for no treatment. But since she wants to treat it, I feel that supporting her is the right thing. My mother passed away last year from Stage IV uterine cancer. She was very far advanced by the time they got around to diagnosing her. She was 78 at time of diag. and 79 when she passed, 4 months into "Treatment" She was on taxol and carboplatin, the "Gold standards for ovarian and uterine cancer' First line chemo. Honestly, she didn't want chemo but surgery was not an option, at least not initially and my mom wasn't ready to die. They never mentioned palliative care or how recurrent these types of cancer are. Very recurrent. Just be aware the chemo is rough, even with the weekly dense dose that they give elderly patients. It is cumulative, they don't stress that very much. They didn't stress the high rate of recurrence and they glossed over the side effects in my opinion. Sorry if I sound angry, still dealing with issues. But if your mom has a good attitude and she wants to fight then good for her. I will hope and pray for good results.

Vicky DeRosia
Posts: 17
Joined: Oct 2010

I also am very angry at the doctors because, I feel as if they are not giving us all of the information needed to make an informed choice, if to continue with chemo or not and it doesn't seem fair.

Pennymac02's picture
Pennymac02
Posts: 336
Joined: Aug 2010

My mom past of metasticized breast cancer last Christmas at the age of 80. She had multiple surgeries but no chemo because they weren't sure about the cancer diagnosis till the very end.I just wanted to say that going the route of no chemo, though not her choice, wasn't an easy process either. We just told Mom we'd support what ever we decided, even if we didn't agree, in the end, none of the chemo or debulking that she would have had if we'd known would have changed the outcome anyway.My sister kept pushing for more agressive treatment, I wanted less. Two weeks before she died my sis was actually considering encouraging Mom's chemo even though it was obvious she was end stage. I was in favor of a much less invasive treatment because her quality of life, after the thrush, the blood infections, the bed sores, the ng tubes and the surgeries was so poor. My sister was my moms medical surrogate, and I tried to be supportive either way, but I ended up being the one to encourage the family to "do no more".
Mom had a week of good days in the hospice before she passed. I guess I'm posting this to say that there are no easy answers, no right answers, just the ones that allow you to do the best with what you know. What ever you decide, make the most of the time you have.Sending positive thoughts your way.
Penny

Vicky DeRosia
Posts: 17
Joined: Oct 2010

Thank you for replying.I use to volunteer hospice what a great organization.It sounds as if you aand your sister are very close and it is wonderful you were able to support each .I need all the positive though I can get .Thank you

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I am so sorry for your situation and I just wanted to say that I tend to agree with Cindy here. I am a 22 year suvivor of non hodgkins lymphoma so have had my share of intense treatments and know how rough it can be even for me when I was only 40.

Like Cindy said, I personally would not take the hope away from your Mom and would suggest you let her have her treatments but prepare yourself because her disease does sound advanced and at her age the cure could be much too hard on her and the outcome grim. Taking away a person's hope is just too personal a thing though and if she wants to fight then God bless her - let her have her fight. She will no doubt know when it's too much all on her own and if the treatment proves too harsh it will be as it was meant to be in her outcome.

Recently a close friend of mine found out her Mother had cancer plus she was struggling with dementia as well. Her Mother said to her directly 'Am I going to die?' and she did not know what to tell her, she was 83. My friend asked me if she should tell her and I suggested not to. What would it do to help her to take away her hope? That was my reasoning, what would it help. As it turned out she passed away quietly not long afterwards but to the end she had her hope and I think that was very comforting to her, must have been. Her cancer though came up out of seemingly nowhere and it was no time before she passed so there was really not alot of time to agonize over how or when or why really.

Also you just never know with cancer. Sometimes the grimest looking situation can turn on a dime or stabalize for sometime unexpectedly so please just let her have her fight and her hope. You know her best though and by the sounds of it you are tuned in to her wants and desires, she is so lucky to have you. That is the greatest comfort of all to a cancer patient. She has done a good job raising you.

I wish I could take away your grief and sorrow but instead hopefully I can offer you the input from another cancaer survivor like me who knows what I would want if I was your Mom. I would want hope and the power to fight.

Blessings to you and yours.

Bluerose

Vicky DeRosia
Posts: 17
Joined: Oct 2010

At times I feel as if I am invading a very personal part of my mothers life.I could never persume to know what she is going through. I just feel as it is very intinmate and personal I often think of my self as if I were a window peeker and not really wanting to see it all,but knowing I will.I would never let my mom know that she is dying ,she has so much hope and I would never want to play God either he may have other plans for her ,maybe unfinished business .Thank you for giving me an other perspective and letting me vent .I will keep you in my prayers.

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

I've been helping my 80 year old mother through almost two years of fighting OVCA. Early on when I suggested not doing the deal she told me to shut up and never say what I thought in front of her friends. Period. I never have, and have been a dedicated caregiver, but having seen what I've seen I would NEVER make the same choices for myself, would NEVER drag my family through this...

But enough about me. Like yours, my mother wanted to fight even though she was NEVER given numbers on the likelihood of success, even told me once that she "knew she only had a 50% chance at a 5-year remission." Don't know where she got those numbers, but they worked for her.

When this all started I worried that Mom was going to go through surgery and chemo only to end up in assisted living, and to be honest, if she wasn't failing now, that's where she would be headed.

Good luck. You're not alone!

Vicky DeRosia
Posts: 17
Joined: Oct 2010

Your mother sounds as strong willed as mine.It seems very sad that the Doctors can't write a booklet on what it is really like to have cancer and chemo and surgery when you are at 70 years and older.I have about fifty questions I would like to know the answer to.My mom asked her oncologist if he would treat his mother with the same treatment plan? He answered her yes. So she states after he leaves the room I feel so much better now.Because of his one answer. I doubt he would treat his mother the same way!I wish there was some kind of board or meeting that a person could go to hear all of the ramifications of cancer.I do understand that each case is drifferent but there are a lot of factors that are the same too.

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

Every case is different, but there are protocols and standards of practice that apply to everyone. Based on what I've learned about OCVA, your mother is getting the right treatment to prolong her life and to improve its quality. If the chemo shrinks the tumors, the fluid problem will be reduced and she will feel better, at least for a while.

I would not let anyone rush into surgery, which won't happen until the fluid problem is resolved or at least stabilized anyway. The debulking surgery for stage 3/4 OVCA is very extensive; privately, an in-family doctor did not think it appropriate for someone of that age, and I agree. Hopefully your mother will continue with a strong initial response to the chemo, which may give her a bit more good time.

Doctor gods are so much fun. I have heard my mother spin her interpretations of what her god said on the way home from appointments, always in keeping with her denial. Denial is a comfy shield with so much to process all of a sudden,so bear with your mama. She probably feels young inside, like my mom. For them, letting go of life is not yet a desirable option.

Cindy Bear
Posts: 564
Joined: Jul 2009

I so understand your anger and your pain. I wish I could say something uber wise.. I think ultimately, you have to do what she wants or you won't be able to forgive yourself. I felt that my mother's medical team glossed over alot of things.. they didn't exactly tell us the truth. We wanted her to get a second opinion but she was to tired of the all the tests, appts and scans. I do wish that we asked the dr. while she was in the room, what the rate of recurrence is (it's very high) and what would chemo offer her as far as increased survival (very low for stage iv) . They told us her liver was fine before she started chemo, it wasn't . A couple of questionable lesions that they wrote off or ignored as probably nothing. Well after she passed the story changed. They were cancerous. The blood work they did every week, after she passed, "OH bloodwork isn't a real good indicator for how well chemo is working" I think a lot of people, including us, naively think that your cancer can't progress while on chemo..nothing can be further from the truth My mother cried, she didn't want chemo. I think if they had been honest with us, she would have opted not to have it. But they make it sound like a sure thing.. when all they are doing is throwing stuff against the wall, seeing if anything sticks..

ruthelizabeth
Posts: 146
Joined: May 2009

Cindy, our dr. not only didn't exactly tell us the truth, he flat-out lied to Don. He would tell me one thing in private and tell Don something else entirely. Don liked and trusted him and had a very upbeat attitude so I didn't say anything in front of him, but... well, let's just say that near the end we got kicked off the dr's patient list because of something I said to him in private. (No, it wasn't four letters, but it was distinctly blunt.)

I honored Don's choices. On some things I might express an opinion or offer a possibility, but it was his decision. He chose to continue treatment until the very end. He wanted to be home as long as possible and in the end was only in the hospice facility one day and I doubt that he realized where he was.

When his son was down helping with care, we had one or two forthright talks on the entryway. For instance, Don wanted a hamburger. He was at the stage where he just couldn't manage to eat one, but he wanted one. He told his son to go get us all hamburgers and his son said, Dad, I don't want to be a wet blanket, but you won't be able ...." And I said, come out on the porch; I want to talk to you. And I said, if it's a choice between you telling your dad he can't eat one and him trying and finding out he can't, you will go and get the hamburgers and let him try. (Have I mentioned I'm not too popular with his son lately?)

I doubt that this will help you with the situation with your mom. I would have been glad to see Don go into hospice and be comfortable and well looked after, but it wasn't what he wanted. He was tough and he wanted to fight. I had to be tough and help. Whatever happens with your mom, you will do the best you can and she'll be glad and proud of you, even if you never know it.

Vicky DeRosia
Posts: 17
Joined: Oct 2010

Thanks forgiving me the support to continue doing what my mom wants.I had an uncle who also died of cancer one day he ask me to take him to the casino and I knew he was not going to be with us much longer and I was afraid everyone would be mad at me for taking him and to this day I regret not taking him.Even if we would gotten 1 mile we at least attempted to go how I wish I had that day back.I swear I am not going to make that same mistake again.The doctors are another story I am so furious with them why can't they be honest.They say oh I am not going to play god but aren't they in way by holding back or only telling half of the story.But with all of this I find myself closer to my mom and learing more about her.There are days like today when I am so angry I just want to sit down and cry I hate this angry feeling.

Noellesmom
Posts: 1312
Joined: Aug 2010

You are between that proverbial rock and a hard place. There's the right thing to do on one hand and the choice you make on the other and sometimes they just aren't the same thing.

This is where this disease takes a personal toll on the caregiver.

You are doing your very best for your mom and I hope you know that.

And I hope you do sit down and cry. I hope you take that release. Because you are going to get right back up and get in that fight and you need the break and release of those tears.

Hugs, Vicky. Please remember you are not alone in this fight. We are right there with you taking every step.

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