Confusion.

TxSky

Last week a cousin underwent exploratory surgery. They discovered two "large" tumors, one on each ovary, that they say were malignant. It has already spread to several locations. They did a radical hysterectomy, an appendectomy, they removed part of the intestine and part of the colon.

The whole family knew that much because that information was delivered to all of us at the same time.

We took turns staying with the patient who was very out of it. Now we're getting confusing information from the 2 people present when the doctor came. We could ask the patient, but I think the questions would stress the patient emotionally. So I was hoping you could tell me which is "more likely" the case.

One report: "The cancer is malignant, but the surrounding tissue is clean and it isn't in the lymph system. She'll be fine. No threat to her life at all. Yes it was ovarian cancer in the beginning."

Second report: "The cancer in all the tissues removed was malignant, but follow up tests show they got all of that. However, it IS in the lymph system, and we aren't sure where it started, and she only has 6 months left."

I don't think it could have gone from ovaries to intestine, to colon to appendix and not be in the lymph of blood systems.

I don't see how a doctor could promise she'll be fine so soon after the sugery.

From those who have gone through this cancer, can you tell me which is .. most likely the truth? The rest of the family does not want to upset the patient, we do want her to be optimistic about her future, but we also want to be realistic about things.

Keelie

Hello TxSky, I'm so sorry to hear about your cousin, but this is an excellent place to come for answers to your questions. Did they tell the family what stage the cancer was? To me, because of the spread, it sounds like stage 111C, which is the stage a lot of us women here have. Did they mention follow-up chemotherapy? Even if they indeed "got it all", most state of the art care for ovarian cancer would definitely include chemotherapy after surgery. Ovarian cancer is notorious for recurring, I'm sorry to have to say. And, many of us on this board are being treated for 2,3 and even more recurrences. Did she have an oncology gynecologist surgeon do the surgery? That is considered extremely important. They are experts at staging the disease at surgery, etc. I hope that perhaps you could go with her to her follow-up appointment that is probably scheduled for the next week or so. As the patient, we are in such a state of shock, that sometimes we aren't hearing exactly what the doctor is saying during the first few weeks, so second and third pairs of ears are definitely necessary. I would be shocked if the her doctors don't 'insist' on chemotherapy. Of course, that would be her decision, they can't make you do it. What were her symptoms? Have you heard what her CA-125 number was before and then after surgery? Most of us become almost consumed by our CA-125 number at certain times. It is a very, very important test the doctors use with ovarian cancer to check on what is going on with the cancer. Most information says 0-35 is the normal range. Recently, we have been hearing that doctors sometimes use 0-21 for ovarian cancer patients. So, try to find out what her number was. How old is your cousin? Is her health pretty good otherwise? Is she home? There are so many others that will also offer information that know so much more than I do, so keep checking in. Others here can even offer you more help if you get to answer some of the questions I've already asked you. All of the women here are great with sharing their experiences and offering help. Stay positive for her, that helps almost more than anything, other than prayer! With friendship and hugs, MichaelaMarie

TxSky

Keelie said:

Hello TxSky, I'm so sorry to hear about your cousin, but this is an excellent place to come for answers to your questions. Did they tell the family what stage the cancer was? To me, because of the spread, it sounds like stage 111C, which is the stage a lot of us women here have. Did they mention follow-up chemotherapy? Even if they indeed "got it all", most state of the art care for ovarian cancer would definitely include chemotherapy after surgery. Ovarian cancer is notorious for recurring, I'm sorry to have to say. And, many of us on this board are being treated for 2,3 and even more recurrences. Did she have an oncology gynecologist surgeon do the surgery? That is considered extremely important. They are experts at staging the disease at surgery, etc. I hope that perhaps you could go with her to her follow-up appointment that is probably scheduled for the next week or so. As the patient, we are in such a state of shock, that sometimes we aren't hearing exactly what the doctor is saying during the first few weeks, so second and third pairs of ears are definitely necessary. I would be shocked if the her doctors don't 'insist' on chemotherapy. Of course, that would be her decision, they can't make you do it. What were her symptoms? Have you heard what her CA-125 number was before and then after surgery? Most of us become almost consumed by our CA-125 number at certain times. It is a very, very important test the doctors use with ovarian cancer to check on what is going on with the cancer. Most information says 0-35 is the normal range. Recently, we have been hearing that doctors sometimes use 0-21 for ovarian cancer patients. So, try to find out what her number was. How old is your cousin? Is her health pretty good otherwise? Is she home? There are so many others that will also offer information that know so much more than I do, so keep checking in. Others here can even offer you more help if you get to answer some of the questions I've already asked you. All of the women here are great with sharing their experiences and offering help. Stay positive for her, that helps almost more than anything, other than prayer! With friendship and hugs, MichaelaMarie

Thank you so much for your reply Keelie.
I will keep all of you here in my prayers also.

I feel so in the dark because I wasn't there when the doctor came in with the numbers and staging information.

She is 32, a single mother with a 3 year old, and she was not in good health by the time they diagnosed it. Many of us think she had this for a long time.

Around November she went through a period of sudden weight loss (almost 50 pounds in a very short time) because she was throwing up. She went to a doctor in a small town where she was living at the time and they told her it was just a sensitive stomach. It got worse and she went back and they told her it was irritable bowel syndrome. When she threw up blood they told her it was ulcers. She kept getting worse, so one of the other cousins insisted she go to an ER in a larger city nearby. The doctors at the ER set up some tests with some specialists and next thing we knew they were doing surgery.

They are going to do chemotherapy. One of the two arguing cousins says they mentioned stage III. The other cousin swears she heard that incorrectly. The patient is more worried about her 3 year old.

At this point, I'm more concerned with the spread of it. My mother was a breast cancer survivor and I am a survivor of a cancer in my jaw. Anytime I hear of cancer spreading I worry. Given it is ovarian, and was also in the appendix, intestine and colon I am relieved that the surrounding tissue is coming back clean, but frankly astonished it is.

She used to work for Haz-Mat, so a part of me wonders if chemicals she might have been exposed to that may have contributed to this, and if that is true, how that will affect any treatments they try.

mopar

TxSky said:

Thank you so much for your reply Keelie.
I will keep all of you here in my prayers also.

I feel so in the dark because I wasn't there when the doctor came in with the numbers and staging information.

She is 32, a single mother with a 3 year old, and she was not in good health by the time they diagnosed it. Many of us think she had this for a long time.

Around November she went through a period of sudden weight loss (almost 50 pounds in a very short time) because she was throwing up. She went to a doctor in a small town where she was living at the time and they told her it was just a sensitive stomach. It got worse and she went back and they told her it was irritable bowel syndrome. When she threw up blood they told her it was ulcers. She kept getting worse, so one of the other cousins insisted she go to an ER in a larger city nearby. The doctors at the ER set up some tests with some specialists and next thing we knew they were doing surgery.

They are going to do chemotherapy. One of the two arguing cousins says they mentioned stage III. The other cousin swears she heard that incorrectly. The patient is more worried about her 3 year old.

At this point, I'm more concerned with the spread of it. My mother was a breast cancer survivor and I am a survivor of a cancer in my jaw. Anytime I hear of cancer spreading I worry. Given it is ovarian, and was also in the appendix, intestine and colon I am relieved that the surrounding tissue is coming back clean, but frankly astonished it is.

She used to work for Haz-Mat, so a part of me wonders if chemicals she might have been exposed to that may have contributed to this, and if that is true, how that will affect any treatments they try.

I know this is a difficult time for all of you, but MichaelaMarie gave you lots of sound advice and support. I agree that right now it's important to get a gynecologic/oncologist on board. I would also expect chemo to be in the picture. To answer your questions about whether or not lymph nodes are involved, staging, etc., request copies of ALL reports, including surgical reports. Your cousin is entitlted to them. She will also have everything if she chooses to see the gyn/onc.

As MM also said, many of us here have gone through this more than once. So please encourage your cousin to have hope. Once she's home and recovering, and if she has a computer, introduce her to this website. Doctors will offer info, treatment, care - we offer love, hugs, support, ideas, suggestions, how to deal with chemo, and lots of good ears and shoulders! And maybe there's a local support group that she can also eventually be involved with. She must be frightened, especially worried about her precious 3 year-old. Right now, she needs to focus on recovery, getting her strength back, and taking one day at a time.
God bless you for visiting us on behalf of your cousin. She's lucky to have you!
(((HUGS))) & PRAYERS
Monika

floridajo

Hi TxSky and welcome,
I really think for the time that your questions have been answered by MM and Mopar..I couldn't think of anything to add, except to really stress the idea that you have an Onc/gyn take over her care, and get copies of all the reports,surgery, and pathology as well. As far as helping your cousin , you might arrange with other family members to help out with cooking,rides to chemo and Dr. as well as help with caring for her 3 yr. old. I had a group of friends that brought me dinner every night for the first 6 weeks from surgery,until I got stronger..it was such a wonderful gift and so helpful..they offered to clean my house,help with shopping and laundry, and just really went out of their way for me until I could handle more myself. This is a great site,filled with love and hope and plenty of shoulders to cry on. Keep us posted,,,(((hugz))))..Joanne

paula2

Sounds like you are a really good advocate for your cousin and especially with your history and experience with cancer. If the cancer has migrated outside the ovaries, then it is staged higher and will more than likely have chemo start up within weeks. It is a strong chemo, so every effort should be made to get her strong and ready for it. I didn't start until 25 days after surgery because I healed slowly and then put my back out and got an infection at the surgical wound site. Being a 3c and told that they got everything, I was surprised to have to do chemo at all. The ca125 came tumbling down after the first treatments and stayed that way for some years.

YOur cousin can use your visits, your just being there will help. You can sort out the details as you go, but right now, she needs the optimism that she will live and thrive again. Her docs will set up an oncologist, but it wouldn't hurt to ask them for more information.
Love and prayers to all of you.
Paula2

saundra

(((Hugs))) and prayers to you cousin. Good advice all given. I am three weeks out of surgery with spread to liver and already in chemo. Texas too. Saundra

aussie59

Hi TxSky,

You have been given wonderful advice from the Ladies on this site and
I would only like to add that in 2002 when I was diagnosed an oncologist
said at the time I would not be alive in five years. This caused me a lot of fear
and proved to be wrong. For 4 ½ years I had many surgeries and chemo’s
and I still worked fulltime and I tolerated the chemos very well. At the time
I was diagnosed I met this wonderful Lady in Hospital and we would exercise
together. She was in her seventies and could only tolerate 5 treatments of chemo instead of six. She has never had a recurrence since 2002 and has since travelled to China and Russia and lived a normal life. She had very strong faith and she would get us to hold hands and she would pray. I don’t believe in statistics and I ignore them because no one knows who will go into complete remission or how long anyone is going to live for as we are all very much individuals.

Another person I know was 62 years when she was diagnosed in 2001 had a very difficult time with the 6 treatments of chemo. She also has not had any recurrences since 2001. She told me that the Drs at the time though she was going to die. We were at Stage 111C.

You have good Cancer Treatment Centres in America and I believe that with all the research going on progress is being made in being able to manage ovarian cancer.
Your Cousin has so much to live for.

paula2

aussie59 said:

Hi TxSky,

You have been given wonderful advice from the Ladies on this site and
I would only like to add that in 2002 when I was diagnosed an oncologist
said at the time I would not be alive in five years. This caused me a lot of fear
and proved to be wrong. For 4 ½ years I had many surgeries and chemo’s
and I still worked fulltime and I tolerated the chemos very well. At the time
I was diagnosed I met this wonderful Lady in Hospital and we would exercise
together. She was in her seventies and could only tolerate 5 treatments of chemo instead of six. She has never had a recurrence since 2002 and has since travelled to China and Russia and lived a normal life. She had very strong faith and she would get us to hold hands and she would pray. I don’t believe in statistics and I ignore them because no one knows who will go into complete remission or how long anyone is going to live for as we are all very much individuals.

Another person I know was 62 years when she was diagnosed in 2001 had a very difficult time with the 6 treatments of chemo. She also has not had any recurrences since 2001. She told me that the Drs at the time though she was going to die. We were at Stage 111C.

You have good Cancer Treatment Centres in America and I believe that with all the research going on progress is being made in being able to manage ovarian cancer.
Your Cousin has so much to live for.

Beautiful comment! Thank you, this helped me too.