Diagnosed on 8/13
I am a 57 year old just diagnosed with ov and I have my first appt with oncol on Tuesday. What all should I ask?
Comments
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Hi,
In my opinion you should
Hi,
In my opinion you should ask
1. What is the cell type?
2. What is the stage and grade?
3. What is my ca125?
Those are the biggies. Other than that, it is "what treatments are open to me?" You may also want to know if your cancer is estrogen receptor positive.
Get a copy of the pathology report on your way out of the office. It will tell you lots that the doc doesn't feel they have time to tell you.
Good luck to you. If you have chemo, you will probably find that it isn't as bad as you thought it would be. You will get through it! Just take it all one step at a time. Hopefully you are healthy otherwise which will be a big help in your tolerance of chemo.0 -
Thank you Lisa, I wroteLisa 00 said:Hi,
In my opinion you should
Hi,
In my opinion you should ask
1. What is the cell type?
2. What is the stage and grade?
3. What is my ca125?
Those are the biggies. Other than that, it is "what treatments are open to me?" You may also want to know if your cancer is estrogen receptor positive.
Get a copy of the pathology report on your way out of the office. It will tell you lots that the doc doesn't feel they have time to tell you.
Good luck to you. If you have chemo, you will probably find that it isn't as bad as you thought it would be. You will get through it! Just take it all one step at a time. Hopefully you are healthy otherwise which will be a big help in your tolerance of chemo.
Thank you Lisa, I wrote these suggestions down to ask. I don't know what you mean by the cell type or estrogen recptor positive?
You are so kind to offer advise.
Thanks again,
Krystal0 -
Krystal,kkend1 said:Thank you Lisa, I wrote
Thank you Lisa, I wrote these suggestions down to ask. I don't know what you mean by the cell type or estrogen recptor positive?
You are so kind to offer advise.
Thanks again,
Krystal
Well, cell type
Krystal,
Well, cell type means what kind of ovarian cancer it is. Mine was mixed. Endometrioid adenocarcinoma and clear cell. I have since been told that endometrioid adeno is the kind you want to have. Clear cell is an aggressive type.
I never studied up much on the estrogen receptor status thing. To this day I don't know if mine was positive or not for estrogen receptors. You can google things if you would like to know more.
Here is a wikipedia page that explains some things about ovarian cancers.
http://en.wikipedia.org/wiki/Ovarian_cancer0 -
They can't stage your CancerLisa 00 said:Krystal,
Well, cell type
Krystal,
Well, cell type means what kind of ovarian cancer it is. Mine was mixed. Endometrioid adenocarcinoma and clear cell. I have since been told that endometrioid adeno is the kind you want to have. Clear cell is an aggressive type.
I never studied up much on the estrogen receptor status thing. To this day I don't know if mine was positive or not for estrogen receptors. You can google things if you would like to know more.
Here is a wikipedia page that explains some things about ovarian cancers.
http://en.wikipedia.org/wiki/Ovarian_cancer
They can't stage your Cancer or determine the cell type until the surgery, and I am assuming you have not yet had that done, correct? Are you seeing a Gyn/Oncologist specialist? If not, please consider finding one before you schedule your surgery. Tests show that women fare better when their surgery is performed by one of these specialists.
If you have had a CT or PET scan, or a vaginal ultrasound, they should be able to tell you how many tumors you have, where they are located, and what size they are.
Ask your doctor if he/she recommends IP chemo, sometimes called a "belly wash", and if the IP port will be installed during your de-bulking surgery.
The most common treatment, if chemo is advised, is Carboplatin and Taxol, given every 3 weeks, for a total of 6 infusions. Ask if you can tour the infusion center where you will be receiving treatment. It helps if you have an idea of what to expect.
Here is some information on the various types of OC:
Epithelial ovarian tumors are derived from the cells on the surface of the ovary. This is the most common form of ovarian cancer and occurs primarily in adults.
Germ cell ovarian tumors are derived from the egg producing cells within the body of the ovary. This occurs primarily in children and teens and is rare by comparison to epithelial ovarian tumors.
Sex cord stromal ovarian tumors are also rare in comparison to epithelial tumors and this class of tumors often produces steroid hormones.
clear cell adenocarcinoma is a rare malignant tumor of the female genital tract, containing tubules or small cysts; it may occur in the ovary, uterus, cervix, or vagina. One form has been linked to in utero exposure to diethylstilbestrol.
Most of us had de-bulking surgery, which is open abdominal surgery to remove as much of the Cancer as possible, and generally a complete hysterectomy is done at the same time. Depending on the stage of your Cancer, you may also have some or all of other organs removed, such as the Omentum, portions of your bowel, appendix, etc. I will be honest....it is a big surgery and takes a lot out of you.
Some of us had to have several rounds of chemo first, to shrink the tumors, then surgery, then more chemo. Your doctor will determine from your scans which is the best route.
The port for your IV chemo will be surgically placed (probably in your upper chest wall) in a separate, very simple day surgery. Most of us have what is called the Power Port. You can Google that and find a lot of information. It saves your veins and makes the chemo much, much less onerous. Embrace the idea of a port. Trust me, you will not be sorry.
This is a great place to hang out and get information, as well as very caring support from the only people who know exactly what you are going thru - your Teal Sisters. Click on any of our pictures and you can read our individual stories.
Carlene0 -
God Bless youHissy_Fitz said:They can't stage your Cancer
They can't stage your Cancer or determine the cell type until the surgery, and I am assuming you have not yet had that done, correct? Are you seeing a Gyn/Oncologist specialist? If not, please consider finding one before you schedule your surgery. Tests show that women fare better when their surgery is performed by one of these specialists.
If you have had a CT or PET scan, or a vaginal ultrasound, they should be able to tell you how many tumors you have, where they are located, and what size they are.
Ask your doctor if he/she recommends IP chemo, sometimes called a "belly wash", and if the IP port will be installed during your de-bulking surgery.
The most common treatment, if chemo is advised, is Carboplatin and Taxol, given every 3 weeks, for a total of 6 infusions. Ask if you can tour the infusion center where you will be receiving treatment. It helps if you have an idea of what to expect.
Here is some information on the various types of OC:
Epithelial ovarian tumors are derived from the cells on the surface of the ovary. This is the most common form of ovarian cancer and occurs primarily in adults.
Germ cell ovarian tumors are derived from the egg producing cells within the body of the ovary. This occurs primarily in children and teens and is rare by comparison to epithelial ovarian tumors.
Sex cord stromal ovarian tumors are also rare in comparison to epithelial tumors and this class of tumors often produces steroid hormones.
clear cell adenocarcinoma is a rare malignant tumor of the female genital tract, containing tubules or small cysts; it may occur in the ovary, uterus, cervix, or vagina. One form has been linked to in utero exposure to diethylstilbestrol.
Most of us had de-bulking surgery, which is open abdominal surgery to remove as much of the Cancer as possible, and generally a complete hysterectomy is done at the same time. Depending on the stage of your Cancer, you may also have some or all of other organs removed, such as the Omentum, portions of your bowel, appendix, etc. I will be honest....it is a big surgery and takes a lot out of you.
Some of us had to have several rounds of chemo first, to shrink the tumors, then surgery, then more chemo. Your doctor will determine from your scans which is the best route.
The port for your IV chemo will be surgically placed (probably in your upper chest wall) in a separate, very simple day surgery. Most of us have what is called the Power Port. You can Google that and find a lot of information. It saves your veins and makes the chemo much, much less onerous. Embrace the idea of a port. Trust me, you will not be sorry.
This is a great place to hang out and get information, as well as very caring support from the only people who know exactly what you are going thru - your Teal Sisters. Click on any of our pictures and you can read our individual stories.
Carlene
It is a journey we all have been on and it is sad we have to meet this way.
I wish you the best of luck and keep us informed on how you are doing0 -
your diagnosis
Hi I was diagnosed in June of this year when I had a hysterectomy for other reasons. How did they discover you have ovarian cancer ? I don't know what you should ask, write down what concerns you because if I don't write it down I always forget and if you forget to ask something call the office they will not mind answering you.
The women on this site are wonderful I am amazed every day at their grace and willingness to help. I hope you are lucky and caught your cancer at an early stage but if not there is alot of hope. Try to relax and good luck with your appointment.
Colleen0 -
Take a deep breath
I always take someone with me to write the answers down to my written questions. Appointments are usually rushed and without notes easily forgotten. You do not have to have all questions and answers at the first appointment. There is a lot to take in the first couple of months. We will try to answer all your questions that we have experience or knowledge of. We hate to welcome new members but you have come to a good place. Try to take it one day at a time. Saundra0 -
KrystalHissy_Fitz said:They can't stage your Cancer
They can't stage your Cancer or determine the cell type until the surgery, and I am assuming you have not yet had that done, correct? Are you seeing a Gyn/Oncologist specialist? If not, please consider finding one before you schedule your surgery. Tests show that women fare better when their surgery is performed by one of these specialists.
If you have had a CT or PET scan, or a vaginal ultrasound, they should be able to tell you how many tumors you have, where they are located, and what size they are.
Ask your doctor if he/she recommends IP chemo, sometimes called a "belly wash", and if the IP port will be installed during your de-bulking surgery.
The most common treatment, if chemo is advised, is Carboplatin and Taxol, given every 3 weeks, for a total of 6 infusions. Ask if you can tour the infusion center where you will be receiving treatment. It helps if you have an idea of what to expect.
Here is some information on the various types of OC:
Epithelial ovarian tumors are derived from the cells on the surface of the ovary. This is the most common form of ovarian cancer and occurs primarily in adults.
Germ cell ovarian tumors are derived from the egg producing cells within the body of the ovary. This occurs primarily in children and teens and is rare by comparison to epithelial ovarian tumors.
Sex cord stromal ovarian tumors are also rare in comparison to epithelial tumors and this class of tumors often produces steroid hormones.
clear cell adenocarcinoma is a rare malignant tumor of the female genital tract, containing tubules or small cysts; it may occur in the ovary, uterus, cervix, or vagina. One form has been linked to in utero exposure to diethylstilbestrol.
Most of us had de-bulking surgery, which is open abdominal surgery to remove as much of the Cancer as possible, and generally a complete hysterectomy is done at the same time. Depending on the stage of your Cancer, you may also have some or all of other organs removed, such as the Omentum, portions of your bowel, appendix, etc. I will be honest....it is a big surgery and takes a lot out of you.
Some of us had to have several rounds of chemo first, to shrink the tumors, then surgery, then more chemo. Your doctor will determine from your scans which is the best route.
The port for your IV chemo will be surgically placed (probably in your upper chest wall) in a separate, very simple day surgery. Most of us have what is called the Power Port. You can Google that and find a lot of information. It saves your veins and makes the chemo much, much less onerous. Embrace the idea of a port. Trust me, you will not be sorry.
This is a great place to hang out and get information, as well as very caring support from the only people who know exactly what you are going thru - your Teal Sisters. Click on any of our pictures and you can read our individual stories.
Carlene
Thank you guys for taking my little sister under your collective wing. I will be with her for the first meeting with the oncologist and am also making a list of questions. She has already been through surgery and is meeting to plan chemo. Carlene, you are correct about the port...it is a lifesaver and would benefit Krystal because she and I have our mother's veins (or rather lack of).
This site was a tremendous help to me in 2001 and I knew she could find information and lots of support here. Thanks again!
Marcy0 -
Marcy....what stage ismarcyg said:Krystal
Thank you guys for taking my little sister under your collective wing. I will be with her for the first meeting with the oncologist and am also making a list of questions. She has already been through surgery and is meeting to plan chemo. Carlene, you are correct about the port...it is a lifesaver and would benefit Krystal because she and I have our mother's veins (or rather lack of).
This site was a tremendous help to me in 2001 and I knew she could find information and lots of support here. Thanks again!
Marcy
Marcy....what stage is Krystal's cancer?0 -
stageHissy_Fitz said:Marcy....what stage is
Marcy....what stage is Krystal's cancer?
Krystal was staged "between 3 & 4". I guess we will find out more next week.0 -
Sorry, hit submit twice...Hissy_Fitz said:Marcy....what stage is
Marcy....what stage is Krystal's cancer?
Sorry, hit submit twice...0 -
fellow caregivermarcyg said:stage
Krystal was staged "between 3 & 4". I guess we will find out more next week.
Hi Marcy and welcome to the 'hood. I'm here to know how to best care for my mother, diagnosed 3c/4 in Feb. 09. There are other caregivers here, too, and in the caregiver forum, too.
A lot goes on in the doctor's conference room that's not in words, what with most of the converstion taking place between the patient and the doctor, as it should be. As the quiet observer, I get much from facial expressions and body language that helps me figure out what's going on. Do ask for a chemo education session, which is usually a short meeting with the nurse. They sugar coat things a bit, but it was tremendously helpful to learn what to expect.0 -
Welcome Kkend
i'm sorry you had to come here, please come back and share your stories and ask questions. Someone will probably be able to help, and I know someone will give you an encouraging word.
Ask about what chemo they plan to do, how many cycles, and what the prognosis is. Get copies of the pathology, post-surgical report and start a file of everything.
You are blessed to have your sister with you, have her take notes and you can go over them later. Usually in the beginning, your head is spinning so you don't really hear what they are saying and it is good to have notes to refer to.
Hugs,
kathleen0 -
Thank you
Thank you for your support and great feedback. I am Stage 3C and I will meet the nurses who will tell me what to expect and tell me about support groups. I was told today that I will be taking Carboplatin & taxel once every 3 weeks for 6 - 8 treatments, You all are great in my time of confusion, fear and denial. I have 2 sisters, a husband and kids(who are a long distance away but call every other day). It's wonderful to have so much love.
Thank you again and again......:)0 -
A sad welcome. You havekkend1 said:Thank you
Thank you for your support and great feedback. I am Stage 3C and I will meet the nurses who will tell me what to expect and tell me about support groups. I was told today that I will be taking Carboplatin & taxel once every 3 weeks for 6 - 8 treatments, You all are great in my time of confusion, fear and denial. I have 2 sisters, a husband and kids(who are a long distance away but call every other day). It's wonderful to have so much love.
Thank you again and again......:)
A sad welcome. You have come to a great place for advice and encouragement. My advice: tell everyone what is going on with your dx. People will want to help. You will get food, cards, visits that make you feel loved and special. I re-read my cards when I am feeling down, the food was a GOD send when I was tired and the visits made the time pass by. Ask for help, accept the help...your husband will appreciate the help and can focus on you and your needs. You have a tough road ahead no doubt: reach out! Visit the American Cancer Society local office. They have programs that are AWESOME. gas cards for chemo trips, The Look Good Feel Better was a great class. Love yourself, put on your big girl pants on and fight like hell!
Never Give UP,
Mary0 -
thank you for your encouragementMK_4Dani said:A sad welcome. You have
A sad welcome. You have come to a great place for advice and encouragement. My advice: tell everyone what is going on with your dx. People will want to help. You will get food, cards, visits that make you feel loved and special. I re-read my cards when I am feeling down, the food was a GOD send when I was tired and the visits made the time pass by. Ask for help, accept the help...your husband will appreciate the help and can focus on you and your needs. You have a tough road ahead no doubt: reach out! Visit the American Cancer Society local office. They have programs that are AWESOME. gas cards for chemo trips, The Look Good Feel Better was a great class. Love yourself, put on your big girl pants on and fight like hell!
Never Give UP,
Mary
Hi Mary,
I know you weren't writing to me, but I really appreciate your words of encouragement. I have just finished my 5th round of chemo and feel like a fish out of water, almost literally in that I can't walk around my house without becoming breathless. It's good to hear some common sense. Thanks.0 -
Hi,
Although I'm a bit late,
Hi,
Although I'm a bit late, looks as if the ladies answered pretty much every pertinent question you need to ask at this time.
It is important that you write down the questions, because by the time you get to the doctor, you will probably have forgotten everything you wanted to ask because the whole cancer diagnosis is overwhelming in itself.
We are glad to welcome you to our page, sorry about the circumstances but you have definitely come to a great and knowledgable group to help you through. Trust me they were/are here for me too!
Sharon0 -
Consider Alternatives
We all know what it is like to be in your shoes. I was diagnosed last August and staged at IIIC. I followed the doctor's protocol with surgery, and what ended up being 8 cycles of carboplatin, taxol, and avastin.
I realized early, however, that if all I did was what the doctor recommended, I would not fare well. My advice to anyone in your shoes would be to:
1. find a good naturopath who specializes in cancer patients
2. use visualization to picture yourself healthy
3. be selfish and put yourself first, don't let the people around you make this about them
4. read "Anti-cancer" by David Servan-Schreiber and get "The Cancer Fighting Kitchen Cookbook" by Rebecca Katz
5. if you don't have a strong spiritual presence to your life, start working on finding one
6. surround yourself with supportive people
There is more to this experience than just the disease. Anything that helps you recognize changes you need to make in your life will be helpful to you.
Although I don't think my doctors had much hope for me (I never asked what they thought my chances were because I wanted only to believe I'd get well) I have amazed them all.
Best of luck to you0
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