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Mom is stage IV- need advice

rocki
Posts: 5
Joined: Nov 2004

My mother was supposed to have her hysterectomy and debulking yesterday, but when they got inside, they found that the cancer had spread over pretty much every surface. We're obviously in shock. My mother asked me to post here and see what kind of advice we could get (I told her that I had posted before and found it to be very helpful). First of all, we haven't been thrilled with the doctor at the hospital. He told me he would talk to her before I would see her and then went out of town for the next week. This left it up to me to tell her that it was more advanced than we had expected (she asked right away and I felt that I needed to be honest since she knows how to tell when I'm not). She was upset and full of questions and no one was there to even talk to us until the next day. Her original surgeon is gone, he left right after giving me the news. He never mentioned future surgery and painted what seemed to be a pretty grim picture. His partner is more positive and says after the initial chemo, surgery is a possibility. Her original oncologist, who is in our hometown and is the only one to really spend time with us and who always answers when we call, told me that they used to do surgery after chemo, but don't typically anymore and he doesn't really think it is a likelihood. The hospital wants her to do chemo there. They say that way they can tell when and if she'll be able to do a surgery. My mom had planned to go to the hometown doctor since the cancer hospital is about two hours away and she is pretty much alone and cares for three kids with severe special needs. Also, she had wanted a port because we've heard so many horror stories about collapsed veins and infections, but the hospital says they prefer to use her arm. The other doctor said a port is a good idea. Everyone agrees that Chemo should start in the next couple of days. We're overwhelmed and still unable to think all that clearly. Any advice or words of wisdom would be welcomed and appreciated.

marymemolo
Posts: 3
Joined: Apr 2003

Dear Rocki -
My prayers are with your mom and your family. It's always a horrible shock to be diagnosed with such a devastating disease. It certainly doesn't help when you don't feel secure with your doctor's advice or attitude. Your mom will probably go through at least 6 months of chemo - 1 treatment per month - typically taxol and carboplatnin. Chemo is hard on the veins and gets worse the more they are used for infusion. An infusion port is a very good idea and is a simple procedure to install. The hospital might be more inclined to install a PIC line, similar to a port, but in any case the port is usually easier on the patient and on the nurses. After each chemo they will give her a blood test to determine her CA125 level which will be a guide to knowing if the chemo is working or not. "Second look" surgeries are less common these days as they don't really do much good, so you will be relying on the chemo to do it's job. It's especially important for your mom to keep up her nutrition and eat well if she is able. There are some good books on cancer nutrition if you need some guidance.
Tell everybody you know to pray for your mom - God is listening.
Best of luck and strength

TealRibbon's picture
TealRibbon
Posts: 44
Joined: May 2003

Dear Rocki,

First let me say how sorry I am that your Mother and your family are having to deal with this awful disease. When I recieved similar news in Sept of 2002 I was given just a few months to live. Cancer was seeded on every surface in the abdomen..... considered INOPERABLE. Diagnosed as Terminal cancer of unknown primary. Long story short...Someone consulted with a ONC/GYN who agreed things were about as bad as they could get BUT he would try chemotherapy (Taxol/Carboplatin) and IF I responded well and the tumors shrank enough he would try surgery later.

Took the chemo, tumors shrank had the surgery, took more chemo then Taxol maintenance for 11 more months. I had a recurrence in Aug of 2004 and I am currently getting Carbo alone and it is shrinking my cancer again. Not a perfect story of sucess BUT I am still here after 2+ years. Quality of life is good and I enjoy everyday God gives me.

I also was not able to get a port due to blood clots and my veins are holding up just fine so far.

I am wise enough to know that this horrid disease may take me someday, but not today. Each day is a blessing and none of us know what time we have left.

Your Mom needs to know there is hope and it is worth the fight.

God Bless you all,
TealRibbon

mopar
Posts: 1948
Joined: May 2003

Dear Rocki: It always saddens me when I visit this site and find someone 'new'. There is probably no one that is not touched in one way or another by this horrible disease - either they have it or have had it, or know someone who does, or are a caregiver. I am all. Im a 4 year ovarian 1C survivor. Several in my family have had different types of cancer. Most recently, I was a caregiver for my mom (colon cancer). We just lost her on October 23. It is so hard for me. But I've learned a great deal during these last years - everyday is precious. We all have something to deal with in our lives but the question is, 'what are we going to do with it?' I'm by no means implying that you should trivialize it and act as if nothing is happening. Just saying take one day at a time, and do your best.

Sounds like your mom has a wonderful daughter to be there for her and help her through this. You have also come to the right place - the people and support and advice here are wonderful, even if you just want to vent.

I did not have a port, but my mom did and she was amazed at how well it worked out for her - no veins to look for and constantly poke at. Of course, as others mentioned, it is a consideration the doctor must look at, but there are several factors. As for the prognosis, we hear many wonderful stories here. I know of someone who's mother was told she had only 1 year or so. She had Stage IV cancer and all seemed hopeless. That was in 1975!

I agree with the suggestion about eating right, etc. Attitude is also important. Of course, there will be so many mixed emotions (including fear) that will creep up. Just be there for your Mom. Continue to stay on the doctors - they are working for you and should be supportive and informative and compassionite. And all of us are here for all of you too.

My prayers are with you and your family. God Bless you. Keep us informed.

Monika

BonnieR's picture
BonnieR
Posts: 1549
Joined: Jan 2004

I am so sorry for the news. But like the others have said don't give up. I like your mom had cancer everywhere and I am still here. Didn't get the port the first time around, but now have one. I am definitely happy to have the port.

I know for me the prayers were a miralce maker. I will add your mom to my daily prayer list. Take care of yourself and know we are all here for you. To support both you adn your mom.

Prayers and a Hug Bonnie

beaw21
Posts: 2
Joined: Nov 2004

Rocki,

I am not sure I can provide much advice on this subject but I just lost my mom to Ovarian Cancer. The situations seem to be the same. My mom found out during her hysterectomy as well. She had a port in her chest and while it was discomfortable for her at first, it wasn't to bad once she got used to it. She took chemo for about six months and they told her she had three months to live. She recently passed over a year and a half later without chemo. I guess the thing to remember about doctors and cancer is that they are both unpredictable. No one can really tell what is going. They can guess and estimate, but it really depends on the person and their attitude towards cancer. My mom chose to live life free of sickness and opted not to do chemo any more and she lived a year past what they expected. While I miss her I know that she enjoyed life much better not being sick from chemo. This all stuff for you and your mom to discuss. If you need anything just let me know/

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