20 year old with OV C

sofarstillhere said:

the c word
I am so truly sorry that your very young daughter is having to go through this. There are so many things they can do for cancer now, but to be that young and have to deal with it, I can't imagine. I was 58 when first diagnosed and that was hard enough. You will probably have to give her time to accept the fact and hopefully get a fighting spirit going. She may be one of the lucky ones that go into remission and stay there. Maybe you can try to focus on that possibility. I know that saying lots of prayers also helps. I'm sure there will be a lot of us saying prayers for your daughter and for you. Patty

Your beautiful daughter
I have to agree with your daughter about not identifying with being a cancer patient--I prefer to be treated as a survivor but I will call myself a "chemo patient."

Now she must do those things that survivors do: take chemo, lose hair, eat when you don't feel like eating, take naps and so on. It doesn't have to be the end of the world--your lives have changed dramatically and the sooner you/she can roll with that, the sooner you can all feel normal again.

You know your daughter best; however, I am thinking of what might help here:

- Remind her that she has a LOT going for her--she is young and strong.

- The problem was discovered before it got any worse.

- She didn't do anything to deserve this.

- Bad stuff happens to good people.

- Protect her from negative people who are going to have pity on her or can't handle her diagnosis in a positive way.

- Plan on how she is going to deal with hair loss (and possibly the loss of eyebrows/eyelashes) www.headcovers.com

- When she cries, just hold her and tell her that she is going to make it. (My wonderul 82-yr old father would hold my hand & tell me that and it really helped).

- www.cancercenter.com (The survival statistics for Cancer Treatment Centers of America are better than the national average when the person enrolls in their care soon after the diagnosis. The survival statistics do look slightly 'not as good' for those who enroll later. Just keep in mind that those who enroll later are the people who have failed their first line of treatment and are usually more advanced by the time they arrive.)

- If she feels crappy after chemo, remind her this is only temporary.

- Take care of yourself and don't let this consume you or burn you out. She needs you to be strong, too.

- When you read the statistics about survival rates, keep in mind that she is not typical and there are no statistics for survival rates on the young ones.

- Stay in touch here--there are some really expert survivors who are willing to help your family.

- Having this diagnosis is an opportunity to learn how many people love and care about you, your family and your daughter--that's sort of a bonus for getting this diagnosis.

I would think that everyone is in shock over this diagnosis and if I were you, I would be thinking of "what could I do to protect my other daughters from getting this disease?" Have you already asked this question of the oncologist? I don't have an answer for you. Please let me know if you get an answer for that one.

Dana Lyne said:

Thank you for the
Thank you for the encouraging words and information... Problem at hand, she already doesn't want to eat and it worries me...I KNOW we have a long road ahead and we've only just begun... Good luck to you all!! I've read many many stories/posts here and you are all wonderful folks!!!!

Medical marijuana for anorexia
I think there is a medicine called Marinol or something like that that could help her appetite. You have to ask the doctor about it. It is really important to have good protein intake to heal after surgery.

Some states have legalized marijuana for medical use and a friend of mine sent me some to use--I just put it into a capsule. It took 2 hours to kick in but then it made food taste wonderful.

One of my holistic doctors told me that there is something in the immune system that fights against cancer AND kills the appetite. Go figure that one out.

Hissy_Fitz said:

Is your daughter in denial?
Is your daughter in denial? Does she not believe she has Cancer? I assume, since she went thru with the surgery, that she has, on some level, begun to deal with it. The chemo is going to be hard on her. I won't lie to you about that. Physically, she may breeze thru it, but psychologically and emotionally, it will be hard for a 20 year old to lose her hair (and eyebrows/lashes), plus all the scars - from the surgery and the port, etc. Girls that age want to wear cute, in-style clothes. They want to go to the beach. I don't blame her; I would feel the same way.

There is nothing fair about this disease. It is obscene that a woman this young - barely more than a child - should have to deal with it. It just breaks my heart.

There is a 26 year old who recently joined another message board (www.inspire.com) and maybe you could connect with her, and even get your daughter to do the same. I think it might help both of them.

Carlene

Denial is a coping mechanism
I have daughters ages 25 & 28 and I cannot imagine how I would handle the situation if I were in your shoes! I would certainly be counting my blessings and be glad that it isn't something worse.

Remember to "watch the donut, not the hole" no matter how hard it is to see your sweet girl go thru chemo--just keep telling yourself "chemo is her friend." The only way I can get thru chemo is to tell myself "this is my last chemo" EVERY TIME!

Even though I should have known better, I was in deep denial about my diagnosis before I had surgery. Somehow, having the surgery made the diagnosis more real but I still had a hard time believing it. I guess I needed to be in denial for a while to deal with the shock of it all.

C

clamryn said:

Denial
Hi Dana, I am so sorry. It is hard enough when we have to deal with the disease for ourselves but when it touches one of our children, it is even worse.

I understand where she is coming from. I was first diagnosed in 1991 and back then I didn't even comprehend what was happening. I would just go along with what the doctors said I had to do...radiation, chemo. I didn't even think about the "C" word. I did think about dying (there I said it) but it was just like I was in a fog for a while and once I started the treatments, I figured I had to do it and then I would be done and I would be okay. Well I went for a pretty long time ...17 years before it reared its ugly head again.

My view: If your daughter doesn't want to discuss it....then don't. She might find a friend that she feels she can talk to better than you. Please don't be hurt by that. If she does decide to open up, listen to her and don't change the subject. I hate it when I try to bring up something about cancer and they will change the subject. I want to talk about it and I want their input.

I have found that the best medicine for me...has been laughter. One of my sons, was always making me laugh. Just crazy stuff. I almost ripped my stitches open after I came home from my big surgery because he was making me laugh.

Give her some time. It is a lot to take in.

Hugs to you and your daughter,
Linda

survivor....
sorry I'm not sure how to post on here so I just replied...

I had just turned 27 when I found out I had a 4lb tumor attached to my ovary, Everything went sooo fast for me, they tested my CA125 and it was well over 600 so they planned surgery ASAP. The hardest part was signing the papers for possible hysterectomy, I was crushed because I thought I'm at the age when babies would be my next step... She is still so young and thats a major plus. Chemo (taxol/carbo) was bad but I managed to get thru and I wouldnt have done it with out the help of my mother... I was only susposed to be in the hospital for 3 days... that turned into 2 weeks since my wound wouldn't close and my postassium was low among many other things and I went home with a wound vac on... since my tumor was so big and my surgery was basically exploritory I had a 14 inch incision vertically from right above my belly button straight down. In surgery they also found the same cancer in my uterus(and no it had not spread from one to the other) They were completely seperate but were the exact same type of cancer... My scar is so ugly but its my battle wound... I survived! I did chemo only as a precaution since they believed they got it all.

Just be there for her... talk with her friends and explain how important it is to come and visit, to give her some sort of normal... my best friends would come and climb in bed with me watch movies and paint my nails since I could really go anywhere with a wound vac on. Support is so important... keeping things as normal as possible helped me and getting outta the house when possible...

I still struggle (I blame a lot of it on Chemo brain lol) plus my heart is not over this whole ordeal and the whole not being able to have children thing... but Im alive and I have to be thankful for that... After cancer you have what I like to call a "new normal" you see things differently you feel differently I cant explain it but I hope she does well!

Positive attitude is a HUGE part of healing and getting thru this! I hope she chooses to fight and try even on her darkest days to see the light... Get her a journal so she can write about her good and bad days. My best friend got me one and as first I was totally against it but at night when I would be crying and couldn't sleep from chemo I would grab my journal and write wether it was a page full of curse words or about my day or how I was feeling it helped to write and not keep things bottled up when you feel no one understands you... its not easy but its possible to make it!

Best wishes to you and your daughter

((((Hugs))))
Nicole

lindaprocopio said:

(((Dana))). So much worse for it to be your baby, than yourself.
I can't imagine anything more heartbeaking than seeing my child have to face this. I'm so so sorry that you find yourself in this unhappy position.

I had an unforgettable heart-to-heart with my surgeon when I had my port put in. (You are awake for that simple 1-hour surgery). He said that with all the hundreds of oncology patients he prepares with a port to start their treatments, he can tell almost immediately from talking with them how they will handle their cancer journey. He said it's like facing 2 doors, and he thinks his patients either choose "Life" or "Death" as their reaction, early on. Those that choose "Life" fight and fight, and learn everything they can about their cancer & the latest drugs, and take any kind of aggressive surgery and chemo and radiation they can almost up until their dying breath, to prolong their time on earth. According to this surgeon, those that early on choose "Death", refuse to eat, resist treatment, and waste the time they have left in a well of bitter dispair and overwhelming grief.

You want to help your daughter choose LIFE. Poor thing is in shock now. I cried harder for myself than I'd ever cried for anyone else; I'm not proud of that. But then I got my Game Face on, And I've been battling almost constantly now for 2 1/2 years, with only small breaks from the endless chemo. But it's been so DO-able! I am STILL symptom free, even after 2 recurrences, and have a wonderful quality of life even though I take an oral chemo daily and go for infusions every 2 weeks. I chose LIFE and I am living as LARGE and with as much gusto as a married 58-year old grandma can life. Please try and get your daughter involved with a cancer support group of younger people, (or at least get her online with this group) because being surrounded by wonderful brave cheerful people making the best of a **** deal, is the surest way to put your problems in perspective. ((((Dana)))). Deep breath. You can both do this.

Needed This
Well-said. I've had a crummy day at work. Parts of my job keep getting siphoned off to others because my prognosis is a question mark and "our company needs back-ups" in place for me." No one should assume that I have one foot in the grave, because...

I choose LIFE.

Dana Lyne said:

My beautiful daughter
Thank you all so very much!! You are all such strong and wonderful people! Amie Lyne will start chemo next Friday! She is coming around! She is asking lots of questions and talking a lot...she asked me today to find her a lady who was diagnosed young and is now "older"... in her mind that could be MY age!!! lol Nicole, I don't know your story, but maybe you would like to talk to her...

Dana

It's going to be tough to
It's going to be tough to find her a mentor who was diagnosed in her 20's and is still around in her 40's. The internet was just a baby 20 years ago, and most people who are long-term survivors of late stage OC don't hang out on the message boards after two decades.

If there are combined gyn cancer support groups in your area there will be young women in them who have other types of female cancer. Ovarian cancer is very rare in women as young as your daughter.

My daughter-in-law had cervical cancer at 25. She made a full recovery and is still cancer free, 15 years later.

Her hair will start to fall out 2 weeks into treatment. I cut mine very short before I started chemo. It's much less traumatic that way, or it was for me, at least. This is the time to start shopping for a wig. If she gets one similar in color and style to her own hair, no one will be the wiser.

Carlene