Trust Your Intuition

akunzel

My life changed in a moment, as many lives have, with one statement, "You have cancer."

It was a twisted road just getting to the diagnosis. I can't help but wonder how many people are out there, undiagnosed, simply because they accept what their doctors tell them without question.

My journey began with a simple prescription refill. I take Zoloft on a daily basis for anxiety. I was running low on pills, and didn't relish going back to the doctor I'd seen in the last year. As anyone who has taken this type of medicine knows, quitting cold turkey is not an option. Long story short, I needed an ally in my health battles, not a judgmental authority figure. I did a bit of a search, and found a general practitioner who has a special interest in women's health issues. Bonus: her office is less than ten minutes from my house.

I went in for my first appointment with her at the beginning of September. I've been diagnosed with Polycystic Ovary Syndrome (PCOS) in the past. We discussed various treatment options, and she did the normal annual screenings. I was having some pretty severe menstrual problems, to the point where I told her I'd be happy to have a hysterectomy and be done. We both agreed it would be best for me to see a gynecologist. She set up a referral.

Now, a bit of background. I've dealt with severe menstrual problems for over a decade. I'll spare you all the details here, except to say I've seen several doctors, including a reproductive endocinologist. Each time, I was sent home with, "you're perfectly normal, aside from the PCOS." The only treatment options I was given made me ill, and when I expressed that, I was told to simply put up with it.

So I saw a gynecologist at a local clinic at the end of September. He did an exam, and prescribed norethindrone. When that failed, he set up a few more tests, including an endometrial biopsy. This is an in-office procedure that can be fairly routine - as long as you've had children or a procdure to dialate your cervix in the past. I had not. I was not instructed to take anything (such as ibuprofen) beforehand. It was an excruitiating experience, and he was not able to get the biopsy he needed. He scheduled a D&C for mid-October.

The D&C was routine. The pathology report came back stating, "endometrial hyperplasia without atypia." This means there were some abnormal cells, but nothing cancerous. After the D&C, my bleeding was so severe I had to have a blood transfusion on November 6th.

This doctor's recommended treatment for my condition was to insert the Mirena IUD. Once again, keep in mind I've never had children. All the research I've done on Mirena, and IUDs in general, do NOT recommend inserting them in women who have never had children. Further research on my part found research studies ongoing using the Mirena to treat PCOS. Ok, so at this point my feeling is that I'm becoming a guinea pig. I'm uncomfortable with the recommendation, frustrated that things have become so bad I needed a transfusion, and disillusioned in general. I started asking my colleagues for doctor recommendations.

I made an appointment with a new doctor for mid-November. It took him less than two minutes to tell me my uterus was enlarged about three times the size of normal. Because the previous doctor had not done a PAP smear, and it had been about eighteen months since my last one, he also took that sample.

The PAP came back abnormal. I had a colposcopy on December 3rd. During the procedure, he noticed some abnormal cells that concerned him, and decided to do an endometrial biopsy. This time, the procedure went without a problem. The colposcopy samples were benign, but the endometrial biopsy showed possible cancerous cells. He was stumped - I had just had a D&C less than two months previous that should have revealed any cancer. Back to the operating room for another D&C on December 15th.

December 18th, the pathology report came back with the diagnosis: uterine papillary serous cancer, grade 3 cells. I had a total abominal hysterectomy on January 15th, and am currently awaiting the staging. I'm facing chemotheraphy. The surgeon also found that I had extensive endometriosis - and probably have had this for some time.

I'm still stunned. If I hadn't listened to my body, to my intuition saying there's something more here, I'd be sitting here with a Mirena IUD, and cancer that would be spreading.

Listen to your intuition. Be your own advocate. Gather as much information as you can. Don't take no for an answer.

lindaprocopio

wow. I was so hoping for a happy ending to your story!
UPSC. That's the probably the LAST thing you wanted to hear; I'm so sorry. I remember when I got that diagnosis myself almost a year and a half ago. You are correct that chemo is probably in your future, so ((((((BIG HUG))))))! At least you have found us here, and probably the BEST real-time current resource for anyone with UPSC on the internet.

Sooooo true that you cannot be complacent or let any doctor pooh-pooh your concerns, as the most deadly of women's cancers are the ones that only 'whisper' that they have come to call. I had no symptoms AT ALL, and my journey started with a questionable Pap test that an experienced gynecologist refused to ignore, even after a flurry of 'non-diagnostic' biospsies.

And I'll tell you, that even though I've had 2 children by natural childbirth, the 2 endometrial biopsies I had were BARBARIC in how PAINFUL they both were!! Important to do perhaps, but both 'non-diagnostic' for me. I usually tell women to skip them & go straight for the D&C pathology.

Sometimes endometriosis is a BLESSING for a woman because it gets her the tests that can uncover UPSC (which almost NEVER has any symptoms until it has metasticized elsewhere!) in an early stage. I hope that this will be the case for you.

akunzel

lindaprocopio said:

wow. I was so hoping for a happy ending to your story!
UPSC. That's the probably the LAST thing you wanted to hear; I'm so sorry. I remember when I got that diagnosis myself almost a year and a half ago. You are correct that chemo is probably in your future, so ((((((BIG HUG))))))! At least you have found us here, and probably the BEST real-time current resource for anyone with UPSC on the internet.

Sooooo true that you cannot be complacent or let any doctor pooh-pooh your concerns, as the most deadly of women's cancers are the ones that only 'whisper' that they have come to call. I had no symptoms AT ALL, and my journey started with a questionable Pap test that an experienced gynecologist refused to ignore, even after a flurry of 'non-diagnostic' biospsies.

And I'll tell you, that even though I've had 2 children by natural childbirth, the 2 endometrial biopsies I had were BARBARIC in how PAINFUL they both were!! Important to do perhaps, but both 'non-diagnostic' for me. I usually tell women to skip them & go straight for the D&C pathology.

Sometimes endometriosis is a BLESSING for a woman because it gets her the tests that can uncover UPSC (which almost NEVER has any symptoms until it has metasticized elsewhere!) in an early stage. I hope that this will be the case for you.

I had trouble in the OR, so
I had trouble in the OR, so they were unable to take my lymph nodes. The surgeon was not that concerned, because his visual inspection of the field showed containment within a small area.
Additionally, he knows I'm likely to have chemo.

My PCP told me that in med school, doctors are taught that there's no pain with cervical procedures such as colposcopy and endometrial biopsies - that there can be a bit of cramping from "visceral" reaction, but that's it. She said she personally doesn't believe that, but plenty of doctors still do. If that's what's been taught, it's no wonder it's a barbaric procedure.

My husband has been blown away by this whole experience. He KNOWS how many times (and how many doctors) I've asked about the possibility of endometriosis, only to be told all my symptoms were from PCOS. My friends have wondered why I've seen so many different doctors over the years. Well, it was because I felt no one ever listened!

shortmarge

akunzel said:

I had trouble in the OR, so
I had trouble in the OR, so they were unable to take my lymph nodes. The surgeon was not that concerned, because his visual inspection of the field showed containment within a small area.
Additionally, he knows I'm likely to have chemo.

My PCP told me that in med school, doctors are taught that there's no pain with cervical procedures such as colposcopy and endometrial biopsies - that there can be a bit of cramping from "visceral" reaction, but that's it. She said she personally doesn't believe that, but plenty of doctors still do. If that's what's been taught, it's no wonder it's a barbaric procedure.

My husband has been blown away by this whole experience. He KNOWS how many times (and how many doctors) I've asked about the possibility of endometriosis, only to be told all my symptoms were from PCOS. My friends have wondered why I've seen so many different doctors over the years. Well, it was because I felt no one ever listened!

Trust Your Intuition
I went for a CT scan because I was having pain on my right side, they saw that I had a fibroid on my left ovary and in my uterus and a cyst on my right ovary and thicking of my uterine lining. I went in for an internal ultrasound which showed the same thing but yet as my doctor was telling me all this he looked at me and told me he felt that it wasn't an OB/GYN problem that I needed to go to another doctor. I pushed with more questions like "is it normal to have your period every 14 days or who knows when it wants to show up". He said no that at my age it should be getting further apart and not closer and asked me if I wanted to have a biospy done. Of course I did... A week later a got a call from the doctors office telling me the doctor wanted me to come in a talk with him. Boy did he do a lot of apologizing after he told me I had cancer, I wanted to smack him!

So you are right TRUST YOUR INTUITION!!!

daisy366

shortmarge said:

Trust Your Intuition
I went for a CT scan because I was having pain on my right side, they saw that I had a fibroid on my left ovary and in my uterus and a cyst on my right ovary and thicking of my uterine lining. I went in for an internal ultrasound which showed the same thing but yet as my doctor was telling me all this he looked at me and told me he felt that it wasn't an OB/GYN problem that I needed to go to another doctor. I pushed with more questions like "is it normal to have your period every 14 days or who knows when it wants to show up". He said no that at my age it should be getting further apart and not closer and asked me if I wanted to have a biospy done. Of course I did... A week later a got a call from the doctors office telling me the doctor wanted me to come in a talk with him. Boy did he do a lot of apologizing after he told me I had cancer, I wanted to smack him!

So you are right TRUST YOUR INTUITION!!!

Great quote Linda!!
"....as the most deadly of women's cancers are the ones that only 'whisper' that they have come to call...."

Wow - now there's a title to a book on UPSC!!!! I'll be happy to write a chapter.

Mary Ann

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