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I am going in for a second opinion. My first appointment with the Onocologist/Gyn was a blur after he said no chemo. I brought a notepad with me but I was so scared I forgot to write anything down. I'm stage 1c and have had a hysterectomy including ovaries. What are some good questions I should ask this new doctor?
Cancer Taxol Surgery Hysterectomy Pain Confusion Diabetes Ovarian cancer
fireball my first suggestion is if you can't take anyone with a cooler head take a small recorder.My ears nor brain worked very well and without my daughters I don't think I would have remembered half of what was said. I guess I'd want to know if there is going to be no chemo how do they plan on following up and how often?
So far, since the first visit I have been going every two months. I have went in 2 times since October to the Onocologist/Gyn and 3 times to the Gyn. I'm tired of everyone seeing my business. I was not happy with the Onoc/Gyn but I will not go into that. I think this time around I am more prepared mentally. Last time my son had eye surgery right after I got out of the hospital for me. I got the news of the borderline tumor on the road. I was too busy taking care of his needs to do any research. I was only supposed to go in to have cysts removed/hysterectomy. Never before that was there any mention of tumor. Surprise.
I agree -- a tape recorder or a daughter (or another significant other). I don't remember half of what the doctor told me the first visit because I got yanked out of my last two weeks of school, was supposed to be administering finals, had yearbook to finish producing, distribute, and pay for, and whatever else... Then, when I began chemo, I was a major trip. I argued my way out of going to my part two of chemo because I swore I never knew I was supposed to have a Friday IP of Taxol. AND, my chemo nurse even checked and said, "yes, the ward nurses have your signature on the information form." So, my daughter wisely said, "Let's have it a given, my mom is ditzy, so you tell me and I will sign all papers."
Now, 3 months after completing my 6 sets of chemo, every time I see my doctor I go armed with a list of questions, printouts of research I've read about, etc. And, my questions are written down!
That is wonderful that you are only stage 1c and the doc said no chemo. :-)
It's so scarey. This all was found by accident. I put off going to the gyn for four years. I thought my tubes are tied other things come first. (I'm so bad) I don't have any daughters. I used to regret that now I am so happy I don't. I would never stop worrying about them getting ovarian cancer too. As it is I constantly tell my younger sister she needs to be tested for a marker. As far as bringing someone with me. I can't do it. Either myself or my husband need to be around for my son.
You need to take someone with you. That person should have the notebook to take notes. You should prepare your questions and bring them with you. Good luck.
I agree with the other girls. Take someone with you...do you have a good friend who could go? Have a notepad with your questions to ask. You can write the answers and record it. I don't remember half of what anyone said to me during that time as I was walking around in shock or too sick to pay attention very well. Make sure the person you bring is alert and good at paying attention and remembering. My husband nor my sisters who are nurses ever remembered any details that were told them by the doctors, etc. and I was too sick at points to remember....it left me in a mess sometimes. I soon learned to bring my notepad with the questions, write everything down, and then refer back to it. I often forgot the things I wrote when I looked back at it and was glad I had recorded it. Chemo did a number on my memory...it is still shakey. Good luck with your second opinion.
Thanks everyone for the advice. I am so used to be the one in charge taking notes and asking questions for my son. It's different when it is you.
Fireball,
There are some good lists of questions on the web. Try entering these words into google: ovarian cancer questions ... and you will see lots of possible lists. But also its important to think about what it is you feel you want to know and ask those questions, even if you already asked and got answers but don't remember. But i completely agree with everyone who says to bring someone with you. What I've found is that I can pay attention to my conversation with the doctor in the moment, ask my questions, ask for explanations, push for clarifications, etc. but my partner is writing everything down for future reference
I'm with you on the surprise diagnosis...I went in for a laparoscopy to remove what everyone thought was a recurrence of a benign cyst, only to be told I had cancer and would have to see a gyn oncologist and come back in for the bigger surgery. It sucks! But you are lucky to have found it while in Stage I. I guess most of us (including myself) don't get diagnosed until Stage III. Be happy if you really don't need to have chemo!
BevL
Hi, Fireball. I think that the first question I would ask is why they are not recommending chemo. Then I would ask what the percentage is of women who have a recurrence at this stage without chemo and what percentage of women have a recurrence with chemo. Basically they cannot tell you definitively if there are any microscopic cancer cells floating around. It's a scary thought, but that is the reality. When it all comes down to it, you need to do what you are comfortable with. My Mom has stage IIIC, he obviously had to get chemo, but what they said is that they got everything except for some tiny granules on her stomach. If the granules were not there, I would have had her get chemo (well at least plead for her to get it anyhow). The problem with OVCA is that when a tumor is taken out, "tiny granules" like sand can fly off. They cannot see it, nor can anything tests pick them up, they are only picked up once they begin to grow and at that point you are dealing with something larger. The statistics say that when caught at a stage I there is a 90% chance of a cure- awesome statistics and I'm happy that if you had to get this- you are at that stage, however, if you were my Mom, I would want you to have the chemo to stay on the safe side... It is definitely a personal decision and probably one of the most difficult decisions that you will make. All I could recommend is to think about it, weigh all your options, look at your life and see what works best for you. Whatever you decide, let us all know. There are so many of us here who are happy to help with support regardless of what decision you make.
Take care and hugs,
Kathy
Fireball, Tomorrow I have an important consultation with a new doctor, and I asked my son to go with me. Yes, it is difficult to ask questions, listen to what the doctor has to say, ask follow-up questions and remember what exactly the doctor said. My son has a more objective point of view, asks questions I didn't think of, and, what's more, remembers the doctor's answers more precisely than I do. I also take with me a list of questions that occurred to me in the days before the appointment. In the beginning the doctor, who evidently isn't used to this kind of thing, eyed my list suspiciously, but now he's getting used to it, and at the last appointments he assured me a couple of times that he appreciates my inquisitiveness. It may require some effort to be so insistent, but after all it's your life that hangs in the balance! Zid
Fireball, Tomorrow I have an important consultation with a new doctor, and I asked my son to go with me. Yes, it is difficult to ask questions, listen to what the doctor has to say, ask follow-up questions and remember what exactly the doctor said. My son has a more objective point of view, asks questions I didn't think of, and, what's more, remembers the doctor's answers more precisely than I do. I also take with me a list of questions that occurred to me in the days before the appointment. In the beginning the doctor, who evidently isn't used to this kind of thing, eyed my list suspiciously, but now he's getting used to it, and at the last appointments he assured me a couple of times that he appreciates my asking questions. It may require some effort to be so insistent, but after all it's your life that hangs in the balance! Zid
My oncologist has been proactive in helping patients to ask questions. Whenever I am scheduled to visit him, he has a form which lists current medications on file and if any changes, what level of pain you are experiencing and any comments, and what questions you would like answered in this visit. I have always taken a list of questions and it really helps to have them written down for the doctor so we make sure they are all answered.
I agree you should definitely have someone with you. By all means, write down your questions, I always do, and my husband usually has his, too. We usually let the doctor give his overview and then start in on our questions. If you don't want your husband or a friend to go with you, call your local American Cancer Society and ask if they have a volunteer that can go with you. Perhaps there are ovarian cancer support groups nearby that you or they could contact for help with this. It is crucial that someone else is in the room with you and the doctor. I can't tell you how many times I had to ask my husband what the doctor said, and I am very used to being the one asking questions and being in control. It's just too much information to process in the few minutes that you see them. Good luck.
If I were you, my first question would be "Why no chemo?".
Try that google search and find questions you'd want answered.
My hubby's been right there with me every time. He always wants to know what questions we have.
I've got a great onc. He's the president of the American Cancer Society of Alabama.
Please keep us updated.
Take care & God Bless
This is how my dr. explained it as to why I am not having chemo. He said it would be like trying to run a bug over with a ferrari.
Just for my own piece of mind. I had a CA 125 run myself and it was only 6.
Fireball, My doctor said no chemo, too. I go to the Dana Farber Institute in Boston. She told me the reason why is because there has been no proven trials done that prove that chemo works on borderline ovarian tumors. I was concerned about not having chemo either, but she reassured me that if it was necessary that I would be given it.
If you do not already have it you could ask for a copy of your pathology report.
I know how you feel putting everyone else ahead of youself. My daughter was sick during her high school years then also had my elderly dad and my brother went blind from diabetes. I put off making my own dr appointments while I took everyone else. I have to put myself first now.
Fireball,
I'm glad you're getting a second opinion AND that you got the CA125. It sounds like things look really good.
A year ago I would have said push for the chemo. Now that I'm 14 months past chemo and still cancer free, I feel differently. In my case, my cancer had metastasized, so I had to do chemo. I will tell you the side effects for me are longer lasting than I'd been led to believe. There are also some side effects that weren't mentioned or that were severely underestimated. I'm grateful for the prompt surgery and the chemo--it's why I'm still here. However, chemo is literally poisoning your body. If you've ever read mysteries where a person is being slowly poisoned, particularly the ones where the victim doesn't die but has major mysterious symptoms--i.e. recurring digestive problems, mental confusion, etc., that's what happens to your body during chemo.
I came to this site after I finished. Some women had wonderful oncologists who gave them a wealth of information about minimizing side effects. My oncologist was very knowledgeable and skillful, but I received very little information about vitamins, nutrition, etc. If you do end up getting chemo, ask many, many questions, and come here for advice if you don't get it during treatment.
I won't do chemo again unless I absolutely have to. It's too hard on your body, and my gut reaction is that oncologists are doing the best they can, but it's too early in the ovarian cancer game for them to know the long-lasting side effects of the various chemos they prescribe. Heck, it was last year before I finally found an article saying, "Hey, maybe chemo brain fog is a physical issue, not a mental one!"
I'm confident you are going to have a long, healthy life!
Blessings.
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