Silent killer???

[wannasmile63]

I was just wondering why ovarian cancer is called the "silent killer" when it seems to have so many symptoms??? Hope this doesn't sound like a stupid question, but surely so many women with OVCA just don't happen to find out they have this terrible disease by chance, without symptoms. Also, when it is first suspected, how long do the majority of sufferers have the symptoms before DX ? I would really appreciate some feedback on what made everyone suspect things weren,t right. I've got so many questions in my head, but am really trying to sort out what are normal (for want of a better word) signs of ovarian cysts, versus signs of OVCA.

[wannasmile63]

Thankyou all for your kind words. I really feel as though I'm armed with a wealth of information since my last appointment, and I definately will be taking more control when it comes to my treatment. I have a beautiful 10yr old daughter who is just starting puberty, and I am going to make sure when it comes to problems associated with being female, she is going to know everything she needs to. She has the biggest heart out of everyone I've ever met, and she wakes with a smile, and its still there as shes dozing off to sleep. I intend to be around to share her hopes and dreams.
thanks Maurita.

[Jene5278]

I totally agree with Burnzie.  Insist that there be a GYN/ONC preferally performing the surgery let alone assisting.  This is very important.  With having mesh and multiple surgeries and you need someone there that is going to be able to know how to handle this even if it is not cancer.  Keep your head up and stay in control of your healthcare, be persistant and Good luck.
Jenevieve

[Burnzie]

Hi Lisa,
Sorry about your mom and it is hard to lose your mother.  My mom has been gone for 10 years now and I still miss her company, but it gets better as time goes on.  I find comfort knowing that we had a good relationship and death can't ever take that away.  
My husband and I just celebrated 25 years of marriage and had family photos done, ( the first ever!!)  I look at the album and think of what we've accomplished together.  I know that I will die of this disease but when I look at those photos I think, "ovarian cancer cannot take this away from me".  I've had a career, but my greatest accomplishment has been the family.  I'm not saying they are perfect kids or anything; just that when the chips fall down it is family that matters the most.
I guess lobbying to the govt's is the way to get the TVU a standardized test.  To be honest, I don't know how accurate it is in early stage disease, however, so we might be "barking up the wrong tree".  Thank you for your passionate interest in this disease.
Have a good day.  I am going to get ready to ride on our motorcycle.  We are going away for a few hours.  It only going to be 10 degrees today so it might be a wee bit chilly!!!!
Karen

[Katie116]

My dear daughter in law was diagnosed 5/14/09. She began having symptoms 4/09. Symptoms: just not feeling good, bloating, achy, being unable to take a good, deep breath; then a low-grade fever. Went to PCP - heart problems? PCP ran EKG. Maybe anxiety? PCP prescribed Xanax. DIL thought - maybe IUD? She'd had it put in in 9/'08 and had had a few problems w/it. GYN decided maybe ovarian cysts. Did blood tests, et al. Scheduled laparoctomy (don't know how to spell that!) When they went in w/camera, saw OVCA - ovaries, cervix, uterus, fallopian tubes, diaphragm....  Went to MDA several times, drained liters of fluid from lungs/pleura. We were shocked speechless. My DIL never had health problems, is not hypochondriac. Went faithfully for annual exams, et al. Has 2 kids, 7 & 5. Caucausian, 40, not of European Jewish descent, no family history of OVCA or breast cancer. Dianosed Stage 4. Has undergone 6 (?) chemos so far, had major radical surger at The Mayo Clinic about 6 weeks ago. Going back in November to check for lung cancer.

I knew nothing about OVCA 'til now. It is a perfidious, silent, devilish disease. The disease is horrible. The chemo gets worse with each treatment. Hopefully, they won't find cancer in the lungs in Nv. If they do, there'll be more surgery. And at least 2 more chemos.

OVCA is E V I L and insidious. We need a test - some sort of test. Not being scientific or a doctor, I have no clue as to what that might be. CA  125 is unreliable accoring to what I've read. I have no idea of the transvaginal ultrasound, but if folks on this website recommend it, I think I'd take heed. The ladies on this site are incredibly knowledgeable because they've had to take the initiative to discover all they can. OVCA doesn't get much publicity or spotlight. We need to work to change that.

[Burnzie]

Hi Maurita,
I know that having the mesh in there makes the operation more tricky but try not to get too worried about it.  They will get the mesh out as best as they can and carry on to the main operation.  I agree with you about making a list because then you don't forget anything.  It makes it much easier to make an informed decision when you have all the answers to your questions laid out in front of you.  If I were you I would insist upon having a gyne-onc because if it is cancer you are going to want the right professional; the Doc who sees this every day and is used to more complicated gynecological surgery.  I don't mean to scare you.  It may not be cancer, but if it is your best chance of beating it starts with a gyne-onc Doc.  If it isn't cancer then thats okay too.  Try to enjoy the weekend and forget about this for a little while by doing something fun and good luck.
Karen

[wannasmile63]

Hi Karen, my GP tried to get me in earlier, but even he was told I have to go through the ER. He did seem very concerned after talking to the specialist, and just wants me to get in there ASAP, but I keep putting it off. I have been told they will be having 2 surgeons for the operation, but I'm not sure if one will be a GYN/ONC. I think I need to make a list, cause when I get in there I kinda get overloaded with information, and forget the millions of questions I have to ask. At this stage my main anxiety is regarding the removal of the 20x15cm gortex mesh, I have in my abdomen, which was the result of a car accident, which caused multiple incisional hernias 12 months after my hysterectomy. It was the most painful recovery I've ever had, and I can't believe that I now have to have it removed, before they even begin removing my ovaries, and whatever else they're looking for. I really can't find alot of information about the mesh removal part.
Maurita

[Burnzie]

Is it possible that you be put on a cancellation list for the gyne or gyne-onc appointment?  I'm not suggestion here that you have cancer, but think that maybe you would feel less anxious waiting less time.  Is your surgery going to be done by a gyne onc Doc?
Karen

[wannasmile63]

Thanks so much ladies. Karen, when I said monitored, I'm not sure I've used the correct word. I have been diagnosed with ovarian cysts, which I have never experienced before in my life, I am 46. I was admitted to hospital for 3 days in July, with pain etc and they also did the CA-125 on me. At my follow up GYN appointment I was told my CA-125 is elevated, and they can't really be sure exactly what the cysts are until I have laparotomy to remove both ovaries and do biopsies. I had my uterus removed 9yrs ago. I have found all of your posts above extremely helpful, especially while I'm on this watch and wait. I have my next ultrasound in 3weeks and Gyn appointment in 5 weeks. At that appointment I will be given the date of my operation. I am going through the Australian public health system, and it is very slow. They did want me to commit to a date in September when I went, but I think I got scared by everything they were telling me, menopause, complications they are expecting with removing mesh from previous surgery, mentioning cancer etc. I know for sure I'm not well, but because of many previous surgeries, I keep thinking maybe its because of this or that. It is also hard when you don't menstruate to really gauge your cycle, but the pain is unbearable at times, but apart from that, which is a daily occurence, I have weight gain, extremely fatigued, bloating and constipation. The pain and weight gain have only been happening for about 6 months. I really feel if I had been educated about ovarian problems in my life, I definately would have had them removed when I had my hysterectomy. This will be my 6th abdominal surgery, and really caught me off guard.
The information available on this site is incredible, and its just great to be able to express all my crazy thoughts without burdening my family, especially as there is so much REAL knowledge here. I lost my mum to bowel cancer 9 yrs ago, so find it hard talking to my siblings about my problems to much, as none of them have even ever been in hospital.

[Lisi251]

Hello Burnzie-
I too am very upset.Is there a way that we as women can be a voice to get through
how important it is to make this transvaginal US as important as a ultrasound!!!

I have been on this site fora couple of months & have made a couple friends I really
feel connected to one of which that had surgery this week.It really hurts me to know
that if bigger measures where being taken to detect this horrible disease so many
women maybe wouldnt have to suffer this way.

I didnt know Chris Crecco but feel as if I did & my heart has just been broken for
her & her family & friends......

Lisa

[nyc lady]

The average length from presenting to a doctor with symptoms is between 3 and 12 months....that could be a delay of a year!!!!  A YEAR!!!!

As most of us would go to our medical doctor with these symptoms would most likely be put on some medication for our intestines for a couple of months to see if that worked, then maybe they would send us for an upper GI series....etc...until finally a CT Scan, Sonogram or MRI would be done to show issues with out ovaries.  Not only do we have to educate ourselves on our body and learn to listen to it, we need to educate doctors....all the way from internists to gyn's.  

There is a great program called Survivors Teaching Students where surivivors go and tell their stories to young doctors when they are doing their OB/GYN rounds....some groups have also expanded to PAs and NPs.  I recently approached a large teaching hospital here about the program and they want to extend it to Fellows.  Getting the word out is key.

I was diagnosed with stage 1A...and had every single one of the symptoms....so they can and do exist regardless of the stage.

Pam

[Burnzie]

The transvaginal ultrasound is the best tool we have right now in diagnosing this disease.  There is a blood test but its not reliable because it can give false negatives and positives and can be elevated with other conditions too.  I'm almost certain that the majoity of Docs don't think of ovarian cancer when a patient is listing off symptoms.  I think they are stuck in the mindset that it is a rare and "older persons" disease, so they eliminate that in their minds, if they even think about it in the first place.  We have a program in Canada, which is relatively new, where survivors go to universities and teach second year medical and nursing students the signs and symptoms of ovarian cancer.  This is a good idea but its tough to keep the momentum going because survivors are battling recurrences and effects of chemo all the time.  Educating the medical personnel before they start their practces and getting a reliable test is key in my opinion.  I didn't know the signs and symptoms of ovarian cancer before I got it and I'm a nurse!  You might say, "Boy, she's a stupid nurse" but it really isn't taught in school.  Last year the gov't declared September ovarian cancer month, so that will probably help with time.
Right now anyone that is diagnosed in stage 1  usually finds out as a fluke and were being investigated for something else.  I know of 3 women that happened to, one being my sister and that is not right.  There should be a test!!  Anyway, that is my rant ; sorry.  I get quite "hot under the collar" about this dilema.
Karen

[Lisi251]

Wow -I am horrified,I have had somethings going on that just to me dont seem right
so I went to do my yearly stuff(which I havent done in years)and got sidetracked
with the mammo something I thought would be fine.
It turned out to be a Fibroadenoma which I had surgery for.I thought surely when I
get my pap it will tell if i have ovca .Is that the only way to tell transvaginal us?

I am really in shock that Dr.s dont make patients more aware of this. I described all
these symptoms to my Dr. and he said he wanted to take them all serious so he
would do all blood work,send me for pap,& mammo. I was relieved thinking he
was covering all bases.
I dont even know what to say I simply am shocked.

Lisa

[survivor_susie]

Boy, is it silent.  I had absolutely NO symptoms. None.  The docs were just checking out my fibroids when they thought they saw something goofy.  They found mine at stage 1C.  May everyone be as lucky as I was.

[Searching48507]

Karen,

Thanks for the post as well.  At times I want to wear a banner and insist that all women are given the transvaginal as part of the annual screening with the pap smear and mammograms.  I figure for a billable cost of $150, that the true insurance cost is much less, and the peace of mind - PRICELESS:-)

Have a great day,

The other Karen

[Burnzie]

Hi Karen,
I just read your post after posting and I'm glad you are doing that for yourself.  I have advised my girls who are 22 and 20 years old to do that too and I hope they are always as diligent as you are.  Good going girl!! Thats the best way to keep ahead of this disease!
Karen

[Burnzie]

Hi there,
Your questions are very good and you are wise for asking them.  Ovarian cancer is considered a "silent killer" because the symptoms very often don't become apparent until one has late-stage disease, which is considered stage three or four.  There can be many symptoms but often there are only one or two present and they are passed off as "normal" for perimenopausal or menopausal women, such as weight gain, fatigue, etc.
Docs often want to suggest that it is a digestion problem and investigate that first, and then, by the time its diagnosed its even more advanced.  After I was diagnosed I thought back to some symptoms that I had from time to time, but they were never consistent.  Its an insidious disease and is very difficult to get rid of if diagnosed in late stages.  The best advise I can think of to give you is to know your own body and what has always been "your normal", listen to the "little voice inside of you" that we often acknowlege but never give it another thought.  Finally , you say you are being monitored for ovarian cancer.  What exactly do you mean and would you consider having your ovaries removed to rid yourself of the cyst problem?
Karen

[Searching48507]

Ovarian is called the silent killer or more often the whispering cancer because the symptoms are vague.  Ovarian cancer is not diagnosised during annual pap smears (pap check for cervical cancer).  Most women when experiencing the symptoms of ovarian cancer (bloating, pains, constipation, etc...) are more likely to ignore the symptoms or to shrug it off as something else.  By the time the cancer has spread, that's usually when there is no more ignoring and you are then diagnosised as a stage III or stage IV.  Every women is different and the symptoms may be different as well.  The best to be done is that if you know of a history in your family (like myself with my mom and grandma), is to have an annual transvaginal ultrasound.  Even if my insurance won't pay for the ultrasound, I will always.  That gives the inside look as to what is going on.  I just schedule that with my annual mammogram, pap etc...  No ignoring for me.  If the beast is going to come after me, I'm going to try to catch it as early as I can for the best chance possible.

Karen