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135691 tn?1271097123

You must be your own advocate

I feel the need to share my expierence with ovarian cancer, mainly in the last 8 weeks. I had a CT scan on September 25th. At my appointment the following week, my oncologist tells me the bad news - two new masses in my pelvis. They copy my scan onto a disc and I wait a week for an appointment with my gyne/onc in Toronto. He pops the disc into his computer and comes in to tell me that he see's nothing. No masses. I am completely shocked, to say the least. He also tells me that he is by no means a radiologist and will forward the disc to his radiology department for a second opinion. I go home, wondering if everything might actually be ok. I have to have surgery a week later because one of the "are they or aren't they there" masses is blocking my left kidney - a stent is put in to alleiviate the pressure. 2 weeks go by - I call Toronto and ask if the radiologist has hgad a chance to look at my scan. I'm told the radiologist my gyne/onc wants is on holoidays - I'll know by the end of next week. Fine. In the meantime, I feel so much pressure now on my right side. I deal with it - after all, theres nothing there, right? I get a call last Tuesday - the disc I took down to Toronto almost a month ago was just looked at. They say that the wrong scan was put on it - there was no scan from September. When the Dr told me he saw nothing, it's because he was looking at a scan from May. I am in shock. The proper scan is immidiately copied and shipped by Purolator to Toronto. Too late - the damage has been done. I ended up in emerg Wednesday night with horrific kidney pain. con't...
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Avatar universal
Becky,
I am so sorry you are going through this h*ll!I can't believe those darn doctors! They make me sick, I have been praying for you, it is not fair! My heart goes out to you, I hope your not in pain, do you have strong enough pain killers? Let us know how you are doing.
God Bless You!
Angelwings21
Helpful - 0
143952 tn?1237864541
becky, i am so sorry!  i've been thinking about you almost daily, wondering what was happening with your ct scan.  do these doctors see so many patients, year after year, that they forget these women are real people with families at home who love them?  you go ahead and be the biggest b***h you need to be in order to expedite your surgery and chemo.  you'll be in my prayers.

susan
Helpful - 0
Avatar universal
Becky's right... sometimes you need to be a bit of a bi***. Sometimes too, they start to ignore you. My gyn who saw me through from the first ER visit for severe pain to surgery to all the problems after, started ignoring my complaints. I got my medical records from the clinic, and lo and behold, she pretty much called me a looney psycho with IBS who needed anti-depressents and anti-anxiety drugs and was in denial about needing them. Well, guess what... all that **** and all the IBS comments (which I don't have, have never been diagnosed with, and who the heck made her a gastroenterologist who can diagnose with no tests), now I know why she was ignoring me. Well, ha to her, I had requested my records because I made an appointment with another dr for a second opinion. Sometimes, you just have to go elsewhere and try and find someone who will actually pay attention to you. After all, we're not complaining of problems for no reason here!
Stay strong, and keep being proactive. If you feel one person is ignoring you, go to someone else who will listen to you.
Stay strong, women!!
~Marianne
Helpful - 0
Avatar universal
I am so very sorry to hear of your setback.  I have read your posts in the past and find you to sound like such a compassionate human being; always there for everyone with a positive answer or approach to what we are inquiring about. What goes around comes around.....you, too have the concern, compassion, prayers and love of all of us here on this site.  It's no easy haul, but you know that; what you don't know, is that  you WILL do it!  It stinks that you have to go through this all over again; but think "positive results" in the end!  I too, had an irresponsible oncologist who, after my CA 125 had doubled, (days shy of going into my 5th year of being clean),insisted that I sit back and wait another 2 months before we do the CA 125 test again.  I said, "screw this", I worked too hard to get this far. I let her go immediately, found another wonderful oncologist, and by the time I would have been having my second bloodtest done if I had listened to my first onc., I had a second surgery and was heading towards my third chemo treatment.  No one likes to hear the word "recurrence", but you are strong, and will get through this.  We're all here for you; and I have added you to my nightly prayer list.  God speed, Becky; you're gonna make it!
Helpful - 0
Avatar universal
Oh Becky,I wish I could hug you.Life is just total s**t sometimes.Stay angry with them all,it will get you through the next few weeks.Whenever I have a ct scan,the next time I see my onc I ask to see my scan,then I get her to show me all the new growths,and compare it with the previous one,and sometimes I even ask her to draw my abdomen and draw in the tumors,because I have to 'see' it to beleive it.Make sure you do it from now on.They should be grovelling at your feet now....
Stay strong girl-its the only way to get through this ****,shed your tears,then get angry,then blast this cancer into space.
My tumor-I call her old annie-I've had her two years now,nearly,nothing gets rid of her and now the little blighter has had twins(two more tumors) and boy are they giving me gip-I'm taking them to be blasted by chemo in a week or so once I've seen my onc on Thursday-I can't wait.I'm sending you a hug across the oceans and we'll BOTH be celebrating in a few months time,when we're dancing with NED, you see...
Loads of love
Sue xx
Helpful - 0
Avatar universal
Hey,
I am so sorry to hear of what's going on in your life.  Sometimes life deals a crappy hand of cards. It's hard to remember that doctors are humans sometimes, because they hold so much in their hands.  
I also have a story to share, not about ovarian cancer, but breast cancer.  A mother figure of mine recently passed away from breast cancer.  When she lived here, she was in remission for years and went for routine x-rays and everything seemed fine.  She was having bad hip pain, wrist pain, and rib pains so the doctor sent her to see a chiropractor.  Six months of seeing the chiropractor and still being in serious pain, turns out the doctor was just signing her charts without actually reading the x-rays. So her hip was completely hollowed out from cancer, and could have broke from seeing the chiropractor. She ended up needing a partial hip replacement, and numerous surgeries to block off the cancer, on top of radiation and chemo therapy.  She moved to Phoenix, AZ to go to the Mayo Clinic, and ended up passing away years later from cancer.  
So I second Tybear's message, don't be afraid to be an a** if need be.
Helpful - 0
167426 tn?1254086235
I too am very angry.  I don't have cancer, just my daughter does, but reading through your posts has made me very aware of what is going on in the medical field. As a retired RN, I am very disturbed at the lack of perfection we all expect from the specialists. Your disc was probably sent on by an underpaid lab tech. We need to bring this to the highest possible authority. Here in the states we need to call it to the attention of the AMA, our Senators, letters to the editors, The Cancer Association.  Doctors are human, yes, but a mistake was made in your case, so someone needs to answer for that. Maybe a few good law suits would wake up the courts and the medical profession. The money received from a sucessful suit won't cure the damage done you, but it will and can bring attention to a serious problem in diagnosing OV. My daughter went 4 months, with her doctor telling her it wasn't cancer.  My thoughts and prayers go out to you.
Helpful - 0
Avatar universal
What I want to know is was the date on the scanned disc?  If so then I would think that second doctor would be responsible for not checking it.
Helpful - 0
158061 tn?1202678326
what a major screw up.  It is not bad enough we have the one of the worst cancers, but for them to do that.  How can you get them in Canada?  In the states they can be reported to the state boards of licensure, and healht and we can sue.  I have reported a physician.  the big problem comes in, is that you need them, unless there is another.   I fault them both -did the second one read the name on the scan?  
My thoughts and prayer are with you.
Helpful - 0
Avatar universal
I'm so sorry for you.  I also have a 3 year old at home while I deal with ovarian cancer.  I just finished my chemo.  I cant imagine what you are going thru.  Try to stay strong and give that little one a big hug. You can do this!!

Kimberly
Helpful - 0
Avatar universal
Oh Becky...I am so sorry.I really don't know what to say.I am going to stop complaining right now. I also have a 3yr old.I can only imagine how upsetting this is. You're right you have to be your own advocate(sometimes we worry about other's feelings too much).I have just said a special prayer for you..please let me know if there is anything I can do..
I'm pretty close to you..by the way when did it get soooooo cold?
Mary
Helpful - 0
Avatar universal
Tybear, I"m sorry so for all the trouble you've had.  Your message is very important don't stop telling your story.  I also truly believe we must be our own advocate.

Good luck with your treatment and surgery and let us know how you make out.  

Hugs,
Debbie
Helpful - 0
135691 tn?1271097123
They do another scan. It's not good. My masses have grown - one by over 2 cm. I now have nodules along my peritoneum. I also have psammomic calcifications throughout my abdomen - cancer. I have grade one cancer - slow growing cancer. Look what happened in 4 weeks. Please be your own advocate for your health. I trusted that the Dr's knew what they were doing. But you know what? They are only human - they make mistakes too. Now I have to pay the price. Don't let these kind of mistakes happen to you. I'm now waiting for more surgery and more chemo. I have a 3 yr old at home - this is not fair to him. Don't allow yourself to fall between the cracks. Who cares if you **** people off - it's your life.
Helpful - 0
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