Pathology report/Post op notes

Hello TMC
So sorry to hear about your mother. Mine was diagnosed last July with stage 3c ovarian cancer. I don't know why they would call it "chronic" but I do know that this is a cancer they often times treat like a chronic illness. I think what's most important right now is just to get your mom stabilized and then see what the doctors say about treatment. Most of the time, the patient gets de-bulking surgery, where they remove all the cancer and then they decide if they are going to do chemo. It sounds like she's in good hands. Write down any questions you have and then ask the doctors when you see them. I have found that my mother's doctors have been quite forthcoming.

tmc576 said:

As of last week...
As of last week, they were still planning on doing chemo as soon as my mom's kidney functions stablized. We found out today her lates creatinine level is 2.3, which is down from a high of 3.8. We meet again with the oncologist this coming Thursday.

Let me ask you for some advice. I know that stage IV is not a death sentence. However, my mom had read early on, that ovarian cancer caught in the early stages has somewhere around a 95% 5 year survival rate. At stage iv, she does not fall into this category, but I don't know whether i should tell her that. The thing that bothers me, is should she have all the facts and statistic so that she can make a more educated choice in her treatment. I am afraid that with her other health problems, that the chemo might just make her feel worse for what time she does have. Believe me, I want her to beat the odds, and do whatever it takes to get better, but I don't want to feel like i am hiding things from her. She is having a hard time keeping a positive frame of mind now, and i don't want to bring her down. I don't think she will ask her doctor, and i don't want to ask in front of her if she doesn't want to know. I'm just not sure how to handle this.

What would you do, or want to hear?

Your mom is 55 years old -
Your mom is 55 years old - not 95. Unless she suffers from some form of early dementia, she needs to be the one calling the shots, IMHO. And to do that, she needs all the information available. She will hear what she wants to hear, believe me. And if she chooses to believe that Stage IV is "early", then that's okay, too. Somewhere along the way, she will find out it's definitely not. Stages III and IV are considered "late stage" OVCA. But I don't think you should beat her over the head with that bit of information.

I am what you might call realistically optimistic regarding my illness. I choose not to discount the obvious (cold, hard stats), but I don't believe in giving up, either. I don't buy the idea that "positive thinking" will cure anyone, but I certainly don't think it hurts. My doctor's colleague, who made rounds for him when I was first diagnosed and in the hospital for a bowel obstruction, told me that long-term survival depends on "a strong stomach and a lot of luck". I think you need that, and God's grace, and a number of other things - like a highly skilled, aggressive-minded Gyn/Oncologist.

The odds for long-term (more than 5 year) survival for those diagnosed at Stage IV (or even Stage III) are brutal, but they are not zero. There ARE people who live 10 years, 20 years, or more. Who's to say that your mom won't be one of them?

If I were your mom, or your mom's daughter - I would press for treatment. If she tries and finds she can't tolerate it, then she might need to re-think the whole thing. But doing nothing means that she will likely be dead in six months.

My first treatment was awful. I thought, quite frankly, that I was dying. I was there for over 8 hours and left the building in a wheelchair. But I never considered calling off the chemo. And today, I am technically cancer-free (meaning nothing shows up in lab work or via CT scan).

I told my doctor early on that I wanted to be the second one to know everything (assuming that he would always be the first). I do not want him telling my husband or my kids anything. I want to tell them. It is my body. My life. My choice.

Carlene

tmc576 said:

I wish my mom felt that way
Unfortunatally, my mom doesn't want to deal with anything. She wants me to make all of her appointments, call her doctors, keep track of everything. Ask all of the questions. She is normally an independant person, so this is a big change for us.

Right now, she is just so sick. She feels like she isn't going to make it through the congestive heart failure and kidney failure.

She is already really depressed and is having severe panic attacks. She is on two anti depressants and an anxiety med. She didn't want the doctor to explain her pathology report, she told him to just give it to me to review.

I don't know how to talk to her about this.

She is afraid. She is
She is afraid. She is afraid because she thinks her situation may be hopeless. I'm not surprised that she doesn't want to hear about the path report.

I would ask her what she wants to do and insist that she make the call while she still can. Whatever choice you make, you will always feel like you should have made a different one. So it really needs to be your mom's decision. Once she has processed the whole thing mentally, she will be in a better place to talk about it with you. I cried almost non-stop for the first couple of months.

My mom was in ICU, throwing blood clots right and left, and they asked me to fill out a form, checking "yes" or "no" to each measure I wanted them to take: ventilator, intubation, TPN nourishment, do not resuscitate, etc. It was, hands-down, the worst moment of my life. I felt like I was giving someone permission to kill my mother.

Carlene

tmc576 said:

Thanks for your input
Thanks for your input Carlene. I'm so sorry you had to go through that with your mom, and that you are fighting this disease.

I asked my mom a little bit ago to think about what she wants to ask the dr on Thur - if she wants to know statistics, recurrance rates, etc. I told her some peolple don't want to know, and if its not going to change what course you take, and only bring her down, that it was her decision to hear on what she wanted to know.

She said that it would just depress her, but maybe she did want to know. But then she said that the doctor told her after the surgery she fell into the 98% survial rate. Well, for the first 10 days after the surgery, she didn't know where she was or what was going on. She was confused and hallucinating. So, i told her that I didn't think that was exactly what the doctor said, that 98% was more in the early stages. She replied that no, she was sure that was what he said.

I just let it go. I will wait and see if she brings it up with the dr. Is that what you would do at this point? I don't want to seem like I think she is going to die, because I think each case is unique and that even if it's only five years, its still FIVE years. But I don't want her to be uninformed either. Like you said, this is HER life.

I would ask the doctor, or
I would ask the doctor, or maybe the American Cancer Society, or the National Ovarian Council Coalition (NOCC), for some literature on OVCA and give it to your mom.

You can Google any of those and look for a contact 800 number or e mail link.

You can also Google Ovarian Cancer and print out just the info that is reasonably encouraging - not the hard core gloom and doom stuff, but more realistic (and helpful) than what your mom is imagining.

I certainly wouldn't argue with her, but I might say, if it came up again, "Mom, you have Stage IV Ovarian Cancer. Early means Stage I or II."

Here's an example: (cut and pasted from another site)

About 3 in 4 women with ovarian cancer survive at least 1 year after diagnosis. Almost half (46%) of women with ovarian cancer are still alive at least 5 years after diagnosis (this is called the 5-year survival rate). Women younger than 65 do better and live longer than older women. If ovarian cancer is found (and treated) before the cancer has spread outside the ovary, the 5-year survival rate is 93%. However, less than 20% of all ovarian cancer is found at this early stage.

This is really a question that can only be addressed by each individual family. There is no right or wrong way to deal with it.

Carlene

Hi,
It does sound like your
Hi,

It does sound like your mom is in the stage IV category.

Most of us on this board are III to IV OVCA and have led pretty quality lives.

One thing I do know from my experience, is that to be thrown into this type of surreal health situation, is very overwhelming. So you have to play by ear what your mother is willing to hear as well as how she is feeling. It sounds as if her kidney functions are stabilizing already, so give her and her body the time to rebound from this shock and I believe with time, things will get better.

Sharon

tmc576 said:

Thanks Carlene,
I will have
Thanks Carlene,

I will have to tell my mom the part about if she really wants to stop the chemo she could. I mentioned to her about asking the doctor about draining some of the fluid in her abdomen like you said. She is just all over the place emotionally. She said she didn't wnat to do that because she doesn't want a needle. She is afraid to have the port put in for chemo. She is NOT normally like this. Hopefully this is just her feeling bad for herself with the people she loves (which she is most certainly allowed to do), and when it comes time to do it, she will be able to deal with it. I keep mentioning to her little things you guys say. thanks so much for everyones, help.

Tracey

The Paracentesis (draining
The Paracentesis (draining the fluid) is virtually painless. It felt a bit weird - the fluid is not so much drained as it is "sucked" out of you - but it did not hurt. Ask the doctor to give your mom Valium or xanax before the treatment, for anxiety. The relief far out-weighs anything else, believe me.

The port is a God send. Ask anyone who has had the "old fashioned" chemo, delivered via the veins in their arms. Again, accessing the port is virtually painless, whereas repeated needle sticks to find and access veins is NOT. The port is useful for other things, too. I have had numerous blood transfusions via my port, and when I had to be tube fed in the hospital, the "food" was delivered thru my port. You never have to worry about the needle coming out or the vein blowing, etc like you do with an IV. I have what they call a Power Port. You can Google it.

I was given anesthesia prior to the surgery to set the port. I had no discomfort afterward. The port is just under the skin. Mine is quite visible, it's that close to the surface. It's the quickest, easiest "surgery" I have ever experienced. Not nearly as bad as major dental work.

I feel for your mom. She is so scared. And I don't blame her. When I was in the hospital and they were doing all that "stuff" to me - blood transfusions and TPN feeding and surgery to place the port and the NG tubes - I felt like I had no control over my own body, that I was literally at the mercy of other people, and I just wanted them to stop and leave me alone. Fortunately, they didn't.

Give your mom a little time to grieve for her "old life". Then try your best to get her into fighting mode. She needs to start chemo ASAP and at the end of the day, you will both be glad she did.

Carlene