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UPSC/Ovarian..medical neglect

lmede64
Posts: 32
Joined: Dec 2009

My sister had a hysterectomy and was diagnosed with stage IV B endometrial/UPSC cancer in the spring of 2011. For treatment purposes they used the same protocol as for ovarian cancer. The doctors involved were not very responsive (she's in Naples, FL, not some third world country) and she lacked confidence in them so she went to MD Anderson for a second opinion. MDA did prescribe a different chemo regime, and her local oncologist followed that. Aside from the usual chemo side effects, she did quite well. She's a trooper. Last summer her CA 125 levels spiked, and she went back for another round of chemo. A recent spike in the CA 125 levels required her to have a CT scan (a PET scan was advised but Medicare wouldn't pay for it because it's a recurring cancer). The PA called her with the results and told her that the lesion on her lung had increased and it was most definitely metastasis. Meanwhile she went over all of her medical records and according to what she found the lesion on her lung had not increased. She called the oncologist's office and the PA told her that she was reading the radiology reports incorrectly and that the lesion had increased but maybe it wasn't metastasis and they could just "watch it". It's been over a month and she still hasn't been able to see the doctor. In the meanwhile she booked an appointment with MDA. Understandably she lacks confidence in her doctors.
In preparing for her MDA visit she did a more thorough job of organizing her medical records and found a report done on a CT scan in 2009. This was done because she was diagnosed at that time with colon cancer; it was a separate primary cancer. She was stunned to see a note by the doctor that there was "a suspicious mass on the cervix which measures 7.2 x 2.9 cm. This finding is concerning for a primary cervical cancer. The uterus is also enlarged and heterogeneous." There was never any mention of this to any of the specialists she was seeing at that time or subsequently..no follow up despite her complaints of bloating (and she's petite). It was over a year later that she had the hysterectomy, UPSC diagnosis, etc. You always hear that the reason that these cancers are often not discovered until they're late stage is because they're so hard to detect. Sometimes it's just because the people in charge don't care enough. Their neglect have put my sister in a precarious position. She's heartbroken. I'm livid.

SMD15
Posts: 32
Joined: Apr 2015

I'm a newbie here and am just learning about cancer.  However, I came across your post and just have to say, Oh my gosh, I would be livid too.  I'm so sorry this is happening. 

Sending positive thoughts and prayers your way.

dezzie
Posts: 2
Joined: Aug 2015

Hi Imede,

my wife has also got UPSC and she did not respond well to the first treatment of chemo. Do you know what drugs were given to your sister as part of the ovarian cancer protocol? With the recurrence of the cancer, what options are your sister considering now?

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

HI, dezzie, I am from the uterine board here on CSN. There are quite a few women, like me, with UPSC there who may be able to assist you. I was diagnosed with Stage 3a UPSC almost 2 years ago and am still NED. You may want to post a question there.

Warm Wishes,

Cathy

 

 

Byr15
Posts: 9
Joined: Jan 2016

Hi, I am new here, and confused on this site, am I in the right place? I have a short "story" on my home page. I am in the middle of my treatment for UPSC stage IIIC1 (surgery,chemo done) and start radiation next week. 

Thank you

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2616
Joined: Mar 2013

Byr15, most of the UPSC ladies hang out on the "UTERINE" chat board. but some of us visit the other "below the belt" cancers to find our sister warriors.  

Please visit us over on the UTERINE board, you will be welcomed with open arms.

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