Concerned,
How did it go yesterday?
Cheri

Her surgery is Tuesday the 14th.

But the fact that the scans of her vital organs were clear is very encouraging, right?  Would it be fair to say that its PROBABLY ok?  Or at this point it really is a **** shoot?

I do talk to my mom...not in too much detail - she knows Im scared and I dont want to upset her.  But she knows I love her.

I had trouble figuring out why I needed surgery if the tests showed a very benignly behaving endometrioma.  In her wisdom that comes from life my mom gently reminded me that the tests are just that, tests.  And that the results can vary when surgeons go in and see directly.  She also reminded me that the lab reports used the words 'probable' endometrioma, not absolute.  I figured it was because of my math background that I was taking things so black and white.

The doctor isn't covering himself.  If you read on this forum you will see multiple times where the expectations before surgery and results after didn't match in both directions.  

Unfortunately it won't be until your mom's surgery that you will know what to worry about.  That is the 15, isn't it, very soon?  Hopefully then it will just be your mom's recovery from surgery itself to be concerned about.

You said your mom is calmer than you about this.  I wonder if you talk with her about it, if it will do good for both of you?  I'm sure she already knows how you feel (she is a mom after all) and bringing it out into the open may be nice.  (Of course you don't want to continue talking if once you start you see it getting her worried.)  However, asking this question and thinking of my mom made me think of how much more she knew just by gut than I did.
Cheri

I know this isnt about me and it shouldnt be about be...but Im scared.  I love my mom and no matter how old I get, I will always need her in my life.

She's in her 70's - Im afraid the surgery and the chemo might be too much for her.  She is in otherwise good health, but still, its a trauma for women even half her age.

They see it in/on the ovary and see some cancer on the omentum.  Other than that, the scans appear clear...but I know they cant guarantee anything until they get her into surgery.

This is a nightmare and I wish someone would wake us all up from this bad dream.

God Bless all of you.

ok its me again with another question.

Based on the scans, ultrasounds, etc., it appears that all the vital organs are clear - which is good news.  But, the doc says I cant guarantee anything and he wont know until he actually goes in there.

My question is, is he just covering himself by not guaranteeing anything? OR, even though the scans appear clear, its still very possible that the cancer has spread?

Anyone have any thoughts on this?

Thank you.

A thought occurred to me that you might want to get copies of your mom's lab results and medical records for yourself from her and your brother.  It might help you understand exactly what she's being told, and feel more in control of what's going on.  Also, makes it easier to do internet researches with the right spellings for the words on paper...(so I've found the funny way.)

A finding of 500 is NOT meaningful.  It doesn't mean she has cancer, it doesn't mean she doesn't have cancer.  It tells you zip about what stage any cancer would be in.  The reason I had two doctors tell me they did NOT want to do the CA125 was because the results can be misleading and can confuse the decision process.  In the end I did have it done before the surgery because another doctor pointed out that if I did have cancer a baseline number would be useful in the future, even though it was tell me nothing now.  She did say that if it was the thousands it might raise some thought.  Two other doctors who wanted to use the CA125 wanted to do it ONLY SERIALLY and also thought a single data point was meaningless.  (I'm pre-menopausal, but these facts weren't menopause dependent.)

Hope that helps...
Cheri

Yes, the normal bloodwork can be a good sign too.  Ovca tends to spread in a rather set pattern, from the ovaries to the omentum  and then to the intestines or  just straight on to the liver, and then to the lungs.  Yes, you guessed correctly,  the disruption of the liver functions is often the first clue some women have of the disease.  In fact, when I was going through my "giant scary cyst ordeal" in 2004, one of my bloodtests showed abnormal liver funtion!  Ack!  But, the large ovarian mass was still found to be benign, Praise Be to God for that  blessing!

If the MRI showed any signs of spread, then the doctors would have informed your mother.  

Concerned, I will be honest with you... if your mother is found to have cancer, and her cancer is in the earliest stages (I or II) then she will have six months or so of chemotherapy, and at that point it is possible that she will achieve a status called clinical remission.  Basically, if she responds well to the treatment, then the cancer will be pushed down to levels so low that it can no longer be detected.  How long this clinical remission lasts is unknown. Some women remain this way for the rest of their lives. Unfortunately, others face a return of the cancer in mere months.  There are many factors to consider besides the staging, including which type of ovarian cancer it is, if it is cancer. Some types are so "non-aggressive" that  removal is essentially the cure, with the chemotherapy being nothing more than an added precaution.  Other cancers are so aggressive in growth that even a strong chemotherapy regimen will not stop it.  Until your mother has her surgery, you really do not have enough information to know what to expect.  Meanwhile, you and your mother have my prayers for the strength you need to get through the surgery.  We can worry about what happens next at that time.

But if opening the abdomen, the cancers are easily seen.....doesnt it go to follow that the CT scan would also easily pick it up?  From this perspective it sounds like my mom can be in an early stage.  Also, apart from some discharge, she has no symptoms and has her appetite which is a good sign.  Her bloodwork from her family doctor a week or two before the gyncological visit showed nothing out of the ordinary - also a good sign.

But can you be in an early stage and have a CA-125 of over 500?  Thats the part thats really throwing me.

Ive never been so worried in my life.  Cancer must really suck.

There is a very common process used by oncologists in these surgeries.  The same process was even used for my surgery, and was explained to me in detail prior to my operation.

The first step is that the doctors  open the abdomen and then visually inspect the area  before doing anything else.   I was told by my doctor, as well as by a retired surgical nurse, that cancers are often easily seen, unless the cancer is contained inside the mass itself or in very small implants in the abdomen.  After the initial inspection, the next step most commonly involves gently placing the mass in what I will call a "plastic bag."  This step is taken so that if cancerous cells are present then these will not be spilled into the abdomen during the removal of the mass.   Next, surgeons usually perform a procedure in which they remove small samples of tissues and fluids from the bagged mass in order to study them under the microscope while the patient is on the table. Because of this study, usually referred to as a "frozen section," the surgeons often have a very good idea of the diagnosis before the surgery progresses any further. If the samples appear to be clear, then the surgeons proceed to remove the mass in its bagged state.  If the samples appear to contain 'bad cells' (whether malignant or otherwise abnormal) then the surgeons not only remove the mass, but take biopsy samples from the abdominal area.  These biopsies allow for a staging of any cancer (degree of spread.)  All the tissues and fluids removed during the surgery are usually sent to a pathologist who studies the samples with a trained eye and prepares a report.  Often, it can take a week or more for the pathology report  to return, but it is likely the surgeon will have an idea of the diagnosis immediately after the surgery.

Yes, Concerned, it does appear from the information that you have regarding your mother's condition that if she does have cancer then it is very likely that it has been caught in an early stage.    At least now you know how the surgery should proceed.

I talked with my brother again...I think it was a CT scan she had done.  So since theres no evidence of spread, this is very encouraging, right?

Also, will they be taking tissue samples of the surrounding organs or lymph nodes or whatever?  If so do they find out then and there if everything is ok or do we have to wait days to find out.

One of the nurses also told my mom that in older women, it tends not to spread as quickly.

Any thoughts?

Thanks for the responses Mickey - I really appreciate it and its been a comfort to be able to come to this site to get info.

Doctors order an MRI or CT when they believe a patient might have cancer and they want to look for spread.  Both are useful when trying to detect solid tissues.  The MRI is useful for determining fluids (it can image fluids as well.)

I suppose that it can happen, but I have never heard of read of a patient having the entire omentum cancerous.  Usually, the cancer is implanted here and there.  That is correct; the omentum  is not necessary and can be  removed in its entirety.  In fact, part of my omentum was removed during my surgery for a benign cyst as the cyst had attached itself to the omentum.

Thanks, Mickey.

I did find out something from my brother.  It turns out from the MRI or whatever scans she has done shows no signs that it spread to the surrounding organs...but the doc said he cant guarantee anything until he goes in there.

The only thing that showed on the scan in addition to the ovary problem is that she has a thick omentum.  The doc said it could be cancer or it could be just that she has a thick omentum.  Either way, he says it isnt a vital organ so its coming out.

How sensitive is the MRI?  If it indeed did spread, would it have detected that?

Thank you all for your patience.  I will pray for all of us.

Take care.

One more thing...the week before she went to the gynocologist, she went to her family doctor for a checkup.  She had bloodwork done and everything came back fine.  ok the bloodwork wasnt testing for cancer, BUT if it had spread at all, surely something would have come back out of whack, no?

Im a basket case. I want her to be ok.

Hi Mickey.  I spoke with someone from a hotline who had Stage 3C and her CA-125 was 2700. So youre right advanced stages could very well be much higher. I dont know all this medical stuff but over 500 sounds very high to me.

Anyway, Im not sure if they found any spots or masses elsewhere.  As far as I know they see her original cyst, an enlarged ovary and a "complex mass".

The doc does keep asking her how she is feeling.  They seem surprised she is having no symptoms...as if they EXPECT her to have them.  Or maybe theyre verifying that it probably hasnt spread she is not having symptoms.  I guess Im reading into everything.

They did say after the surgery she will have a few weeks to recover then they will give her 6 sessions of chemo - each session 3 weeks apart.  Will this do the trick?  Or is this a chronic disease she'll always have to worry about?  I read somewhere that if you get to the 5 year point cancer free then you should be ok with no recurrences....or is that not true?

It breaks my heart, because if this is a nightmare for me, I cannot even begin to imagine what my mom, and the rest of you, are going through with this.

Actually, 500 is not as high as it sounds.  Frequently women with advanced stages of ovca have CA-125 levels over 1000.  And it is not unheard of for women with benign conditions to have CA-125 levels well over 100.  

Also, yes, the fact that her exams were normal last year is a good sign.  The fact that she had not felt any discomfort or other indications of the disease is a good sign.  Most ovca is discovered in later stages because women finally seek medical care for the various symptoms of the disease, and by that time it has spread.  And, yes, if the imaging, including an MRI, shows only one mass, with an enlarged ovary, but no further signs of spread such as large amounts of pelvic fluid  (ascites) or implants (sometimes referred to as 'seeds'), then it is indeed likely that your mother's cancer, well, we should clarify that as being that if she is found to  have cancer, then has been most likely been caught at an earlier stage.

Thank you all for the nice comments and for taking the time to respond.

My mom is otherwise in very good health.  Even now she feels fine and has no symptoms.  But with her CA-125 so high and the fact that I dont know how many months this has been going on has me terrified. They dont know what stage she is in...or at least theyre not saying.  Supposedly they dont know until they get in there. I pray they caught it in time.

In front of her I have cried a bit...but Im not showing panic...at least I hope not.  I just want her to be ok.  I love her and, selfishly, I need her in my life.

I agree that you sound panicked - and your mother will feel that and panic also.  When I was diagnosed with thyroid cancer two years ago the hardest part was seeing my son's (teenagers) so scared and emotional (tough guys don't cry right?  Pleeease!)  It was hard to reasure them that I would be ok - but then knowing how much they loved and needed me helped a lot - and is helping now as I go through this new trial.  I know several women in their 70's who have survived OC.  Is her health otherwise good?  Come to this forum and panic but when you are with your mom bring her peace and strength.  She needs that from you now.
God bless - I will pray for you both.

Concerned,
I, too, am fairly new to this board as my Mom was diagnosed with Stage I ovarian cancer three weeks ago. She is 68 years old.

Her pelvic exam last year was absolutely fine. She developed back pain a few months ago and went to get an xray in December to check it out. They discovered a "shadow" on the film and through a CT scan discovered a very large (think Nerf footbal-sized) tumor on her right ovary. She had a uterine (partial) hysterectomy thirty years ago so when they discovered this mass, they decided to operate to remove the tumor and her ovaries. At that time the pathologist determined it was Stage I cancer. As an FYI, her CA-125 test was only 4. Some of her other CA tests are a little elevated. Like others have said here, the CA-125 is only one marker to help in diagnosing ovarian cancer. My Mom's recovering from the surgery and her chemo will begin next Thursday. Although it was caught early, it's a very aggressive form of cancer so we need to treat it as such.

You sound panicked, Concerned, and I understand. I'm right there with you. These are things you never expect...things that come out of left field and hit you upside the head. Understandably, you are scared, as am I. I'm hardly an expert---only someone who can offer an ear. The folks on this board seem terrific... continue to "talk" your way through this. Please keep us posted and let us know what happens with her. She is very lucky to have a son who is so "Concerned."

Just that your mom has you looking out for her, and involved in taking care of and going through this with her is a huge help.  Having support can make a difference in the outcome.  

You asked for truth, so I'm going to say this... Ovarian cancer does move relatively fast, so it is possible for it to show up in the last year.  However, if the cyst has been there for years without much change, then it's unlikely that that's the problem, so whatever they found is still new and may well be in early stages.  

It's great that she has ultrasounds regularly since the problem with this cancer is that it has not much in the way of symptoms so it's not found early.  So, we are all putting energy to this turning out to be early stage or better yet, a false impression from the ultrasound.  (It does happen, even if rare.  Someone posted for her significant other a few months ago, with high ascites, pain, 7000 on the CA125, and no health insurance.  When they were finally operated it turned out to be endometriosis.)

Even if it is one of the other stages, several people have posted recently about success at fighting it with survival at the 5 year mark with a stage III diagnosis.  I posted yesterday about my friend's mom who was stage III back in 1997 and when I talked with her last less than 2 years ago, her mom was just fine with no signs of cancer.

There are some new treatments being developed.  Hopkins just published about a new way to use the chemo that had better success rates (rolling with it so it coats the stomach.)  The skills at debulking techniques have also improved.  This ISN't one of those cancers or illnesses where there's no chance of survival.

It is scary to deal with, but it's important not to come to diagnositic conclusions until the pathology and staging's been done.

I found even amoungst gyno-oncologists, some of them has better sense than others.  So, it's not a bad idea to get a second opinion before having the surgery, and to make sure you are comfortable with the doctor you are using.  

Hang in there.
Cheri

Hi concerned, YOu are helping your mother by being such a wonderful son! If all mothers could be so lucky. I can tell you that MY mother had ovarian cancer at age 71. I do not know what her ca125 was or if they did one, she was going in for other surgery when it was discovered. They did a complete hysterectomy and she had NO OTHER TREATMENT. That was 5 years ago and she is fine.
I would think that they would do a complete hysterectomy and not mess with a biopsy, unless she has other medical problems that would jeopordize her.
Please keep us posted! Our prayers are with you. Patti

Wow....I'm sorry I don't have any answers for you as I am just beginning my own experience but I will pray for you and your mom.  If Kharma has anything to do with this....she's going to be okay.  It's obvious she raised a wonderful son.  She must be very proud of you.

Bless your heart....I'm praying hard for you.

Julie

Im so lucky to have such a great mother.  Im so worried but I dont want to make this about me.  SHE is the one that needs the prayers and support.

Please...the fact that last year they didnt see anything wrong is a good sign right?  Or does this thing spread quicker than that?  I almost fell off my chair when I found out how high her CA-125 was.

Theres a good chance this is still a Stage 1 or 2, right?  Im praying its still Stage 1.

Also this is 2006....treatments are much more advanced right?  She is going to be 75...she can still live till old age, right?

Please tell me...I cant ask these questions in front of my mother.  I really love her.

Thank you all for being here for each other.  God bless all of us.

You and your mom are in our prayers.  Try to relax and wait until the biopsy.  God is wonderful and is with you and your mom.  Please keep the faith.  The waiting is the worst part, but you will have your answers soon.  We are here for you.  You are such a wonderful son and your mom feels your love and prayers too.
~Tascha

Its not based just on the CA-125...its also based on the scans and MRI and ultrasound....or whatever it is she they did.

The gyn-oncologist said all these pieces to the puzzle put together indicate its cancer.

They will do the biopsy to confirm, and if its what they expect, they will remove everything.

They found nothing wrong on her ultrasound last year.  How bad could this have gotten within a year?  Every year they do an ultrasound because she has had a cyst there for over 40 years.  They found nothing wrong last year, but now they found a complex mass and her ovary is enlarged.

In addition her CA-125 is over 500.

Im so afraid for her.  Please tell me its not too late.  I feel sick to my stomach and I feel so badly for my mom.  Everyone please pray for her.  I will, of course, keep all of you in my prayers as well.  Please Im begging you - I dont know what else to do.  I love my mother very much and wish she could be spared this.