fallopian tube cancer

FTCTC said:

Fallopian Tube Cancer
Not sure how to post so I apologize if this thread is linked to another but not intended to be a thread. I Just want to let you all know my story if it will help someone. I was diagnosed with fallopian tube cancer stage 1A in July of 2005. A very rare disease and even more rare; an early diagnosis. I had a pretty large ovarian cyst that had torsed on it's blood supply and I couldn't get out of bed. I was whisked to the ER where they did every diagnostic test in the book but didn't know until they did surgery that they'd find a little hidden cancer in my fallopian tube. My CA-125 was never elevated. Anyway, 6 lymph nodes were taken with no evidence of metastasis. Had the works done and more (total hysterectomy and pelvic cleansing by an OB GYN ONCOLOGIST SURGEON). The cancer was an aggressive little bugger so despite the early discovery I had to go through the chemo and lose my hair...no biggie...quite liberating really. I was supposed to go through 6 rounds of chemo but they ended up not giving me the 6th for fear that my bone marrow would shut down. 5 seemed like a good number.

Anyway, I had several of the vague symptoms prior to diagnosis such as bloating, feeling full quickly, HEAVY periods, etc. But the most notable was spotting between periods with some pain. AND I WAS VERY, VERY, VERY TIRED...so exhausted that I cancelled my hour drive to my OB GYN at least 3 times. I figured I'd see him after I returned from vacation. The cyst torsed while I was on vacation....just in time to save my life. If I had waited another few weeks I could easily have been diagnosed as a stage IIB, which would still be an early diagnosis.

I will be seeing my OB/GYN ONC for life and just started on a once every six month visit with him (down from every 3 months). Anytime I think I am having potential symptoms, he is right on it. I feel scared from time to time but mostly I feel fortunate. I worked way too hard trying to be the perfect working mom and I now have to consistently fight for time for me. I must take care of me first or I may not be able to take care of anyone else. The cancer center I go to has cooking classes to encourage healthier choices in diet, I exercise regularly (even play in tournaments) and I ensure I get plenty of sleep. I also seek complementary health services such as acupuncture. Seems to be working. 6 years cancer free. Good luck to you all! I hope this helps someone.

Fallopian Cancer Stage 1a, Grade 3
My gyno wasn't happy with some of my symptoms at my annual exam. I thought I was starting menopause. I had just turned 51 in early April and had my annual exam on 4/13. I was having very mild spotting between periods, a bloated feeling, and a clear drainage. I actually thought I was leaking urine, but quickly discovered this wasn't the case when I used a tampon and it caught all the clear liquid. Anyway, Vaginal Ultrasound caught a growth in my abdomen...they didn't know if it was free floating or attached to an ovary or what. Gyno/Onco thought it was probably endometriosis. Scheduled TAH for 5/15. Had surgery and discovered that I had Fallopian Tube Cancer. I was fortunate that it was caught so early. But my grade is very aggressive, so I had to take chemo. I just finished round 3 of 6 taxol/carbo. I can deal with the aches and pains of chemo...but the chemo is so depressing. And I was thrown into surgical menopause and the hot flashes and cold chills are driving me crazy. I can't sleep at night. I have a wonderful husband and family and have a lot of support. I just feel really isolated on Days 3 - 7 after chemo when I stuck inside. I live in TX and it is so damn hot that it is impossible to go outside. It makes it hard for me to breathe. After my 1st and 2nd treatment I've been able to get back on my walking routine and walk 1 1/2 miles daily. I don't always feel like it and sometimes I'm terribly out of breath...but I push myself because I can feel myself losing my strength. I haven't lost weight on chemo...I've gained about 5 lbs since the start. I'm very hungry, but a lot of times when I eat it makes my stomach hurt. I'm in a down mood tonight and just hoping that someone else out there can understand what I'm going through.

outlier said:

Rare cancer
I was diagnosed in February 2011. I went in for a uterine ablasion and fibroidectomy to control the heavy bleeding and cramping I had been experiencing with my periods. The surgeon took a sample of peritonial fluid during the procedure. My CA 125 was at 98. Based on a CT guided needle biopsy of 4 lymph nodes in my retroperitonial cavity, I was diagnosed with metastatic smooth muscle cell cancer of unknown primary. I spent all of March, April and May being poked, prodded, scanned, and biopsied. Finally, a complete hysterectomy was performed on May 25th. The primary site was my right fallopian tube.

My GYN oncologist has been practicing for 32 years....I was his first case of FT cancer. And since the average age at detection is 64, my age of 46 makes me an outlier even within this small group!

I did 6 rounds of chemo (Taxol, Carboplatin, and Avastin). Although, I made it through treatment relatively unscathed, I have suffered from side effects since completing chemo. Nueropathy in hands and feet, extreme fatigue, loss of hearing, just to name a few.

I finshed chemo nearly 6 months ago. My CA-125 is at a 5 and my CT scans show NED. While I still don't feel completely back to normal, I feel that I am getting closer everyday. Massage and exercise have become my best friends!! I was blessed to be able to stay off work throughout the course of treatment. In fact, today is the 1 year anniversary of my last day teaching. I will be returning to work (4th grade)in the fall.

It does help to know that we are not alone. I would love to hear from more long term survivors.....

strange path to a diagnosis
I went for a radical hysterectomy on Aug. 2. after having had a biopsy of my endometrium done which showed that I had serous papillary carcinoma. Today I got my pathology report and they found that the cancer was found in my left fallopian tube and not in the endometrium. The doctor was not available so the nurse just read some parts of the report until the doctor can talk to me on Monday. She said that the nodes were all negative, but that the tummy wash revealed some cells. She could not tell me what exactly that meant. I had my omentum removed and that was all clear of cancer. Can anyone tell me more about "tummy wash" and what it means that they found cancer cells there?
You have had an amazing journey to good health and I wish you all the best. God bless you.

Lisa in N.J. said:

Fallopian tube cancer?
Hello loving life and anyone else who can offer some insight,

Let me first say that I am sorry to read all of your stories..... You are fighters and God bless you all.

I have not been diagnosed yet but I fear I have this and I feel my dr. Is not aggressive enough. I am 46 years old...... Have two grown children and just adopted a little girl who is almost 3. I went to my regular gyno in Jan. With complaints of cramping at odd times during the month. A few months later I had a watery discharge which started rightnafter my period and lasted until mid cycle and then seemed to stop. She wanted to do an ablation but I felt like I should see an gyno/ oncologist so I started seeing him. My ca125 is in the 50's. Five years ago, it was a 5. I have had severL vaginal ultrasounds which showed nothing suspicious..... I do have a fibroid on my uterus and a cyst on my ovary which he is monitoring, but he is not worried about that either. I have had a pelvic MRI.....again, showed nothing, in my dr's opinion, nothing suspicious. However, he cannot explain my watery discharge and feels my tests don't warrant any kind of surgery. I also feel bloated, feel full quickly, etc. I am so worried. I tried to get an appointment with another specialist at Sloan Kettering, but they won't see me unless I have a "diagnosis.". And as you know, unless I have some kind of surgery, they can't diagnosis me. I feel I am in a catch 22 situation. Any comments on my situation would be appreciated.........

CT Scan?
Have you had a CT scan yet?

Don't ignore what your body is saying.

I'm a Fallopian Tube Cancer survivor (age 42) and I finished chemo a little over a year now.

louvarn said:

CT Scan?
Have you had a CT scan yet?

Don't ignore what your body is saying.

I'm a Fallopian Tube Cancer survivor (age 42) and I finished chemo a little over a year now.

Ct scan
My dr. Has not ordered that yet...... Just a pelvi MRI and vaginal ultrasounds and because they aren't showing any masses, I think he thinks that I am worried for no reason. Did your ct scan show a mass? What were your symptoms? Thank you for responding to me.

outlier said:

Rare cancer
I was diagnosed in February 2011. I went in for a uterine ablasion and fibroidectomy to control the heavy bleeding and cramping I had been experiencing with my periods. The surgeon took a sample of peritonial fluid during the procedure. My CA 125 was at 98. Based on a CT guided needle biopsy of 4 lymph nodes in my retroperitonial cavity, I was diagnosed with metastatic smooth muscle cell cancer of unknown primary. I spent all of March, April and May being poked, prodded, scanned, and biopsied. Finally, a complete hysterectomy was performed on May 25th. The primary site was my right fallopian tube.

My GYN oncologist has been practicing for 32 years....I was his first case of FT cancer. And since the average age at detection is 64, my age of 46 makes me an outlier even within this small group!

I did 6 rounds of chemo (Taxol, Carboplatin, and Avastin). Although, I made it through treatment relatively unscathed, I have suffered from side effects since completing chemo. Nueropathy in hands and feet, extreme fatigue, loss of hearing, just to name a few.

I finshed chemo nearly 6 months ago. My CA-125 is at a 5 and my CT scans show NED. While I still don't feel completely back to normal, I feel that I am getting closer everyday. Massage and exercise have become my best friends!! I was blessed to be able to stay off work throughout the course of treatment. In fact, today is the 1 year anniversary of my last day teaching. I will be returning to work (4th grade)in the fall.

It does help to know that we are not alone. I would love to hear from more long term survivors.....

Just wanted to let you know

Just wanted to let you know that I was diagnosed in March of 2002, stage 3c-- and I am still here.

All best to you.

betsy

Fallopian Tube Cancer

Hello all you survivors of ftc.     I was diagnosed with ftc in August of 1997.  I had one 6 month treatment of Cisplatin and never had to return for treatment again.   I was treated at the Hospital of the University of Pennsylvania and had great doctors there.  I went in to have a large fibrous tumor removed from my uterus. One lymph node was inflamed and the doctor went looking for the source of the cancer. It was in the fallopian tubes.  I had a complete hysterectomy.  My chemo started the week after surgery and I went every three weeks until my last dose in January.  I do know now that when I left the hospital I still had some cancer in me, but they did not tell me that.  I was an elementary school teacher and I just wanted to resume my normal life.  I prayed diligently and convinced my body every morning that it had brought me through life for 44 years and that my brain knew how to go back to making healthy cells.  Yes, I talked to my body!

I kept only positive thoughts and visited my class often to keep me in touch with the world.  I got involved in other things so that cancer would not be on my mind every minute of every day.  I had great support from my husband and colleagues.  I remember planting daffodil bulbs in October of '97, hoping I would be alive to see them in April. I know that every morning when you wake up your first thoughts are of cancer -- but they cannot hang around and ruin your life.  Do whatever you like to do.  Do not let the cancer diagnosis stop you.  I truly believe that you treat cancer in your mind as well as through chemo.

It has now been SEVENTEEN AND A HALF years since my cancer diagnosis.  I never had to go back for chemo again.  I know that mine is a miraculous story.  I prayed for a miracle and I got one.  Why couldn't you also get one?   Be positive, keep on 'living', do what you like to do.  LOOK TO THE FUTURE!  You surely have one and remember " cancer is just a lump in the potato of life"!

sizwizz said:

Stage ll FT Cancer

Hello,

It seems like this thread is older, judging from the dates the comments were posted, but I thought I'd ask a question anyway.

Did any of you experience nausea with your chemo?  I haven't had any yet...going to my doctor on Monday to discuss the treatment.  In my case, I had a totaly hysterctomy, and all of the lymph nodes taken out tested cancer free.  However, where my fallopian tube attached to the pelvic wall, it left behind some cancer cells, thus the need for chemo.  I don't mind losing my hair, but am concerned about nausea from chemo.

Thanks in advance!

 

Roxy

I had a different cancer but

I had a different cancer but I know these boards can be slow.  Do you know what chemo you are getting?  I have done Cisplatin, carboplatin, taxol, oxaliplatin and gemzar. (Not all at the same time)  Cisplatin is the worst of those for nausea but there are many meds that can counteract it.  Emended is great but expensive.  Zofran, compazine and fenergan are also good.  Some find success with Ativan.  I never threw up from chemo.  Of all the chemos I mentioned only taxol will cause you to lose your hair.

 

good luck with your chemo.  You will do great and I hope will land you in the company of NED for all the years to come.  Hugs.

An update with my FTC

Hello again,

I have now had 4 chemo treatments (carbo/taxol), and my oncologist/gyn has me covered as far as nausea goes.  So no nausea, but I don't have much of an appetite following my treatments.  My stomach feels a little queasy, but I eat because I know I need to.  It gets better as I move away from my chemo day.

When I quizzed my doctor about my fallopian tube cancer, he said it's basically the same as ovarian cancer, and refers to it as such.  So when people ask me what type of cancer I have, I tell them ovarian, but my ovaries never had any cancer cells.  According to my doctor, many times ftc will eventually become ovarian cancer, so it's commonly referred to as ovarian cancer.  I found this very odd, but that's what I've been told!  I even went to a genetics counsellor and she also referred to it as ovarian cancer!

My CA125 tests show me at 26 for the time being.  I personally don't have much confidence in the test.  Before my surgery, I was at 10... and I had cancer!!  After my surgery, and before my first chemo, I was 88.  

Two more treatments to go!  I can't wait until it's all over.  Now I'm wondering if I should push for a PET scan, or be content with the CT scan the doctor plans to have done.  Any thoughts on this?  Of course, I would only have the PET scan if my insurance will cover it.

Roxy

5th chemo in the bag!

Had my fifth chemo today...one more to go!  Yay!!

While I was there, I had my doctor clear things up on the fallopian tube cancer/ovarian cancer confusion.  When i was first diagnosed, he told me I had fallopian tube cancer.  Then during one of my office visits, he started referring to it as ovarian cancer.  It came about like this...  I asked if fallopian tube cancer was as aggresive as ovarian cancer.  And his answer was, it's the same thing!  Okaaay...  He said most cells in the tube cancer will cause ovarian cancer.  So I started telling people I had ovarian cancer, basing this on his answer.  Today, before my chemo, I quizzed him again because I was confused.  Finally, he got the pathology report, and said, don't be confused, it IS fallopian tube cancer in my case. (It never made it to my ovaries.) Geez, talk about a miscommunication!!  He's a renouned cancer  oncologist/gynocologist in our area, so I think we just got our wires crossed during our Q&A session. (I probably was the one who confused HIM!!)  Even the nurse administering the chemo, said her paperwork said I had fallopian tube cancer.  So it boils down to I somehow misinterpreted what he was saying.

Didn't mean to bore all of you with my diagnosis story, but it's good to get answers if you're easily confused like me!  

:-)

 

Roxy

DONE!!

Here's the latest...

I have completed my 6 chemo treatments, and had my CT scan a week later, on Sept 28th.  The results are in!  My doctor says there is "no evidence of disease"!!!  Yay for me!!  Today I wernt for my 1 month follow-up, got got a pelvic exam and got my schedule for future appts to monitor my health while in remission.  I will go in for a CA 125 blood test, and a pelvic exam every 3 months.  A CT scan is possible at his discretion.  This will continue for 2 years, and then I go back to just once a year.  At today's appt, he said everything was healed nicely, and he saw/felt no tumors!  It's been a journey, but it's behind me now!  So HAPPY!!