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CHERMONI120's Photo CHERMONI120 Posts: 114
8/1/10 2:52 P

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I just wanted to thank you all for sharing your stories and pushing women to be more aggressive about getting the right tests done. I just ran race last weekend that benefitted ovarian cancer research, they raised almost $500,000! I know that it's a cancer that's easily missed until it has progressed so spreading the word is the best thing we can do to catch this cancer earlier. I've personally never known anyone that had ovarian cancer but when I hear of 12 year old girls dying of it, it breaks my heart.

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THINTWIN2's Photo THINTWIN2 SparkPoints: (17,240)
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5/25/10 6:12 P

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I am a 23-year survivor. My symptoms were a hard distended abdomem and constipation/pain. Ultrasound showed cysts and exploratory surgery followed. The tumors were melon sized. The diagnosis came from tissue samples sent to Pathology during surgery and resulted in hysterectomy but no radiation or chemo. I don't know what my CA 125 was. At that time the blood was sent to Mayo Clinic but now the test is performed here locally. I'm sure things are different now, that was quite a while ago. At least I had a great family doctor and then a good gynocologist. One retired and the other moved but my current family doctor keeps track of me pretty good. My bowel problems didn't start until just a few years ago and I'm struggling with that now. But, we are survivors!

Sandra

"In repentance and rest is your salvation, in quietness and trust is your strength. " Isaiah 30:15

There are no excuses, only choices.

Failure is not defeat unless you stop trying.


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WV_LADY_US Posts: 673
5/14/10 9:14 P

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Thanks. My Gyn doc did the light through the navel surgery (lap, can't spell)this past February to check my ovaries and lots of blood work. He said my ovaries were ok. I figured he did the blood test that you had. I was pretty scared about it, but it turned out ok thank goodness....barb

FANCYQTR's Photo FANCYQTR Posts: 6,053
5/14/10 8:53 P

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They do an ultrasound, then possibly a CT scan. Blood tests will usually show a high CA125 level (over 35), but that doesn't always show up and they have said doesn't always mean cancer. My CA125 was 1100.

Darlene


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WV_LADY_US Posts: 673
5/14/10 3:24 P

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How do they test for ovarian cancer? I mean what test did the doctor do to determine you had the disease. Oh by the way, so glad you got the right diagnose and are well now...thanks..barb

JESLES's Photo JESLES Posts: 215
5/5/10 11:28 A

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Wow, I just was looking around Lebette and I am SO HAPPY you got diagnosed properly. I have found myself in the same situation, with being inappropriately diagnosed, and suffered needlessly.I am SO thankful you found the right doctor AND I have to say, this is a GREAT reminder to NOT just take "THIS" for an answer (meaning being labeled and then letting doctors continue on w/ that label without rechecking). It is SO easy, in my case, to just say "Oh, that's your fibromyalgia" but my gut felt different. I kept asking and asking and after more than two years and FINALLY got a doctor to run some simple tests. I had such a severe Vitamin D deficiency, I was falling down from pain and muscle weakness. It took a year to regain that level, but it was worth it! I TOO am thankful for someone (a doctor) going the extra mile for me.

THEN, the pain was still there (Oh it's just your fibromyalgia, really this time) I kept on and kept on...turned out, I was hypothyroid! However, during that previous time, the medical system started using different guidelines, so I had been for at least three years! Then, oh, menopause started. So lots was going on, BESIDES the fibro, which I DO have, but boy is it ever more manageable now!
Thanks for sharing. It helps me to get my story and my feelings out about it, and can certainly relate to a misdiagnosis. Cheers!

Jessica Joy


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JESLES's Photo JESLES Posts: 215
5/5/10 11:27 A

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Wow, I just was looking around Lebette and I am SO HAPPY you got diagnosed properly. I have found myself in the same situation, with being inappropriately diagnosed, and suffered needlessly.I am SO thankful you found the right doctor AND I have to say, this is a GREAT reminder to NOT just take "THIS" for an answer (meaning being labeled and then letting doctors continue on w/ that label without rechecking). It is SO easy, in my case, to just say "Oh, that's your fibromyalgia" but my gut felt different. I kept asking and asking and after more than two years and FINALLY got a doctor to run some simple tests. I had such a severe Vitamin D deficiency, I was falling down from pain and muscle weakness. It took a year to regain that level, but it was worth it! I TOO am thankful for someone (a doctor) going the extra mile for me.

THEN, the pain was still there (Oh it's just your fibromyalgia, really this time) I kept on and kept on...turned out, I was hypothyroid! However, during that previous time, the medical system started using different guidelines, so I had been for at least three years! Then, oh, menopause started. So lots was going on, BESIDES the fibro, which I DO have, but boy is it ever more manageable now!
Thanks for sharing. It helps me to get my story and my feelings out about it, and can certainly relate to a misdiagnosis. Cheers!

Jessica Joy


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SUNSHINES3 Posts: 648
4/22/10 6:59 A

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It was so nice of you guys to share this medical information to others.

emoticon emoticon .


Thanks
Sunshine





Edited by: SUNSHINES3 at: 4/22/2010 (07:03)
LEBETTE Posts: 5
4/21/10 2:00 P

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LorraineB76 - yah! A little paranoia is good! I wish I would have had more of it when I was going to my old doctor, but she kept saying "as long as you are gaining weight, there is no concern about cancer" - huh? I felt I was being a hypochondriac, so I just let her treat me. Ugh!

So trust your instincts. I hope you can find relief from this "minor" inconvenience. : )

LEBETTE Posts: 5
4/21/10 1:58 P

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Awesome news Fancy! Cheers to you for all that you have gone through, and for another year of remission to the 5 year mark? I'll add your handle to my walking bib! : )

FANCYQTR's Photo FANCYQTR Posts: 6,053
4/21/10 12:07 P

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I have been in remission for four years, which has shocked the doctors I have now, but the surgeon I had was pretty sure that all would be killed off (pixie dust as he called it) after he got all the tumors. So I am doing really great on that front.

Darlene


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LORRAINEB76's Photo LORRAINEB76 Posts: 137
4/21/10 5:58 A

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LEBETTE I'm so happy for you! You are cured of cancer and have no more IBS symptoms! Go on and live your life to the fullest. Colon Cancer runs in my family. One aunt died of it, (It metastasized on her stomach) one aunt is in remission and one aunt died of ovarian cancer 3 months after diagnosis. They were all sisters. So you see I get paranoid about any intestinal problems. I still have IBS-C but it's only a minor inconvenience, isn't it? At least I'm alive! haw haw

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LEBETTE Posts: 5
4/21/10 12:50 A

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FancyQTR - no you are not mean!

I should have worded my original post differently. I checked my Sparks Home Page today and saw the membership to this forum and thought "Hey, I haven't needed to visit that in over a year - I'll clean up and make room for another forum!"

I'm so sorry to hear that you are in (?) stage 4. I hope you are doing well with your treatments? Its sounds like you have a good doctor.

On a side note, I'm doing the Los Angeles Revlon Walk for Women's Cancers on May 8th as a survivor and I hope it will inspire others to get involved, keep fighting and keep hopeful. Want to fight against that nasty C-word!


FANCYQTR's Photo FANCYQTR Posts: 6,053
4/21/10 12:23 A

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Lebette, Not to be mean or anything, but if that is the reason you would leave this forum, I am glad you are leaving. I was diagnosed with ovarian cancer 4 years ago and then it turned out uterine, also, so stage 4. I would rather be leaving a forum with everything healed like you are.

I agree with getting the test. Ovarian cancer is one that many doctors don't even recognize as the symptoms closely resemble gastrointestinal problems. That was most of my symptoms, but I was fortunate enough to have a doctor who recognized them.

Darlene


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LINDA!'s Photo LINDA! Posts: 90,156
4/21/10 12:18 A

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Best wishes to you. I am certainly happy for you that you got a second doctor and the correct diagnosis.

Linda - Florida
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LEBETTE Posts: 5
4/21/10 12:14 A

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I have mixed emotions about unsubscribing to this forum. On one hand I'm elated to be a whole year free of any IBS symptoms. My life has changed. I can eat/drink all my favorite foods again and get up early in the morning with no pain or bathroom breaks. I'm no longer socially nervous to be out of sight of a restroom. I feel like I have my life back again.

However, the reason for this is because, after 5 years of being diagnosed and treated for IBS, I changed doctors and found out (on the first visit) that I had Stage III ovarian cancer. Thanks to an extremely proactive new doc, withing two weeks I had surgery, a hysterectomy and I was amazingly lucky. I was one of the few (3%) who had a form of non-aggressive Ovarian Cancer. I didn't need chemo, thank god. Since the grapefruit sized tumor was removed (and smaller ones with it) there has been no interference with my intestines.

I can only feel blessed that after 5 years, this cancer was not fast moving and that I was so lucky to have changed doctors when I did. A simple blood test was all it took - why my first doctor did not do this (even after all my requests to get more tests and telling her that the pills for IBS were not working) is beyond me.

If you are like me, you've heard it before. Before you assume you have IBS, be sure you checked for the dangerous stuff first! Be proactive about your health.

All the best to all of you!



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