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fallopian tube cancer

dolores1
Posts: 3
Joined: Aug 2009

Diagosed with fallopian tube cancer 11/25/08. Surgeon removed tubes, ovaries, utereus and followed up with 6 sessions of chemo. Last CT Scan was good CA125 was 2 Follow up CT in 6 months. Anyone out there with this disease, how long ago was surgery and treatment? Can find LITTLE information regarding this form of cancer.

Doloresl

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

Dolores, Sorry to hear about your predicament. Take a look under Rare and other cancers, there are a couple of people posting there that have your dx.

Lea19
Posts: 31
Joined: Aug 2009

Hey ... another Fallopian Tube Gal here!! I was diagnosed in May of 02. I've had three rounds of chemo and will be starting my fourth very soon:( Believe it or not there is a lot more information along with trials now than there was 7 years ago. Can I ask how you were diagnosed? Congrats how low your CA is. My first two rounds were with Taxol/Carb and my third was with Cisplatin/Gemzar. I had a total hysterectomy plus my tumor was so large that it grew around my bowel and colon - so they needed to resection my bowel and take part of my colon.

Lea

November's picture
November
Posts: 4
Joined: Aug 2007

Please see my profile:

November

I am going on two years of NO chemo, diagnosed with Stage III Primary fallopian tube cancer.

Send me message if you'd like, I don't sign on often, but happened to just sign on.

Sending you big smiles & hugs.......

It's a rollercoaster ride!

Don''t forget to check out cancercompass.com
navigation of message boards might be easier........

Zoup
Posts: 1
Joined: Nov 2006

It's been three years since the end of chemo for Stage III fallopian tube cancer, 3 1/2 years since diagnosis. Have felt great and CA-125 has stayed low, but now starting to wonder about it returning. Had to get good information on prognosis.

antonia1
Posts: 3
Joined: Apr 2010

Zoup
Glad to hear you are doing so well. Do you have scans or just blood work to follow up?

all2u
Posts: 3
Joined: Feb 2012

What is your secret? Yours is the best record I have read since my DX. What Chemo did you take? I wanna know what you do, because it seems to be working

dauntdi
Posts: 4
Joined: Mar 2010

I was diagnosed Oct 07 and this month it has been 2 years since last chemo. I feel great and have good check ups, scans and CA-125 results. Mine was stage 2B. I wish you all the best!

antonia1
Posts: 3
Joined: Apr 2010

I was diagnosed with fallopian tube cancer Stage IV in January this year. I had breast cancer 37 years ago and second primary 20 years ago. On my routine visit to the oncologist in December my tumer marker was elevated. He suspected a recurrence of breast cancer. Had CT scan which showed involvement of abdominal lymph nodes. Biopsy came back breast cancer. My oncologist questioned this and sent me to gynocological oncologist who recommended complete hysterectomy to see what was going on. That's how the FT cancer was diagnosed. I have had 3 treatments of taxotere and carboplatin with three more to go. My CA125 went from 489 to 40 after the second treatment. Happy to see you are doing well. Don't know anyone else with this diagnosis.I had no symptoms. How was yours diagnosed?

Patricias4dragonflys
Posts: 2
Joined: Aug 2010

Dolores,

I was orig diagnosed in Aug of 06 when I went in for a hysterectomy. I had one of the classic signs but becuase this cancer is not seen - no one knew till day of surgery.
Clear drainage that became heavier - also bloating, very tired all the time etc.

I had Stage 1B but Grade 3 tumor. They did total hyst, and lymphnode disect. (nodes were clear)Did chemo taxoterate and carbo - By the way did i mention my CA125 was only 15 at time of diagnosis - this lab is only 50% accurate (kinda scary)

About 6mos ago, I started having lower back pain, a little tired nothing like last time but felt something wasn't right. On routine examine, clear, but CA-125 was elevated. It always hovered around the 20's even a year or two after orig treatment. But it was 30 then 35 then 85, PET/CT confirmed re-occurance next to Aorta and spine - Options were surgery and chemo or chemo and poss cyber-knife. I chose the 2nd, the surgery proposed was risky and recovery hard.

Am doing Taxo and Carbo but they added Avastin(new biologic) Its been a rough go this time around.

In regards to info, there is so little because there are so few cases - most women diagnosed are in there later 50-60's, and sometimes when it is caught, it is more advanced and they don't know what the primary was - God Bless

Kindred Spirit
Posts: 1
Joined: Jan 2011

Hi Patricia4dragonflys,
I was diagnosed with fallopian tube cancer about the same time you were-7/06. Did the standaerd surgery/chemo/radiation and my gyn-onc followed up with serial CA-125's which were ALL NORMAL (less than 15) until the cancer had spresd to my lymph nodes in my neck and who knows where else. DON'T TRUST IT!!! Did more chemo and radiation and when that failed she recommended in 5/09 that I quit treatment and enjoy the summer cause it will be my last. I fired her and had a molecular profile done at Caris labs and started treatment based on what they found. I could feel the tumors regressing in two days! Well, I am now about to start my 7th round of chemo, after 83 radiation treatments ans 13 chemo drugs, and was wondering if ANYBODY knows how to treat this thing??? I an determined to beat this in spite of the odds but am getting very frustrated doing my own research and calling the shots. I would much prefer, of course, to find a treatment that is working. Any ideas?? Anybody??

all2u
Posts: 3
Joined: Feb 2012

IN EUROPE THEY ARE DOING GENE THERAPY, WITH STEM CELLS. THEY ARE ILLEGAL IN THE U.S. wOMEN ARE NOT YET CLASSIFIED, BUT ARE LIVING CANCER FREE AS LONG AS SEVEN YRS NOW. HELP ME, HELP YOURSELF. WE NEED TO GO TO WASHINGTON TO SAVE OUT LIVES, WE NEED STEM CELL TREATMENT AND THERE IS A WAY AROUND THE LEGAL ISSUE IN THE U.S., THEY COULD PAY FOR US TO GO TO EUROPE, AND BE THE TEST GROUP! SOMETHING.... I AM OPEN, LET'S START A FIRE LADIES, I CAN'T DO THIS ALONE. KRI

jfr81415
Posts: 2
Joined: Aug 2007

Hi DOlores How r u doing? I would love to hear your story...my mom dx in 07 ftc IIIB complete hysterectomy with rididual disease 2mm let on rectum did carbo/taxol for 8mos then taxol for one year.....it has been 3.5 yrs and Ca-125 creaping 17-27 PET scan shouwed 4 sm tumors they recomended a study and did a ct scan found another tumor but still a surgical pt for the study.....study kicked back chemo only....carbo/taxol I am scared that she is a surgical candidate now but if chemo does not work in 3mos a PET scan what if CA grows and she is not a surgical candidate......What is your story. I wish you luck in your battle with this awful disease....
Jeanne

dolores1
Posts: 3
Joined: Aug 2009

Hi Jeanne, It will be 2 years next month since my last chemo. CT Scans continue to look good, but my CA 125 is the highest ever 7.8. Doctors say do not worry, but easier said then done. No signs of metastasis even tho it was in 5 of 15 lymph nodes removed at the time of my surgery. I year after my hysterectomy I developed 4 hernias on the site of the surgery, removed and patched the site with plastic!!

I have never had a Pet scan, but if the numbers continue to rise I will request one. I was fortunate that when I had my surgery in Nov 08 I had a gynocological oncology surgeon operate on me, I do have complete trust in her.

At present I am getting prepared to have both of my hips replaced due to severe arthritis. Will do one at a time and hope for the best.

Cafewoman53's picture
Cafewoman53
Posts: 738
Joined: Jul 2010

Hi I had a hysterectomy in June for benign polyps and was diagnosed IIIc we thought it was ovarian until the pathology came back. I was already doing six rounds of carbo/taxol when my Dr started referring to it as falopian tube cancer.
I had a ct/pet scan after the chemo in Dec. and it was all clear for falopian tube cancer with a ca125 of 2. I am now doing six rounds of Avastin for good measure. My ca125 is up to 9 now I know it's low but I don't like the direction it is taking.I can't wait for my next scan as my lymph nodes in my neck lit up on the last scan, the Dr isn't concerned about them but I will feel much better if the next scan shows no growth.
Wow we are a small group there is very little info on our disease. My Dr says it is treated the same as ovarian with similar outcomes. Good Luck you are doing great !
Colleen

dolores1
Posts: 3
Joined: Aug 2009

don't you get tired of being treated as if we had something else! There are more of us FT's out there than we know. We do not even have our OWN RIBBON!! Yikes

Do you think we are overreacting or are the Drs. underreacting?? There are not a lot of stats out there, so I guess we are making new ones. We WILL SURVIVE

Dolores

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

There are probably plenty of women who are being diagnosed and treated as ovarian cancer when the cancer probably started in the fallopian tubes and spread to the ovaries. The treatment seems to be the same as it is with primary peritoneal cancer--these are considered to be epithelial cancers.

The gyn/onc doctors are trying to get the OB/GYN doctors to start removing fallopian tubes when women want to have their "tubes tied" AND to remove the fallopian tube when a women has an suspicious ovary that needs to be removed.

I think the FTC ribbon should be teal & white striped.

outlier's picture
outlier
Posts: 12
Joined: Jan 2012

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.....

chachacha
Posts: 25
Joined: Jul 2012

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.

betsy aaron
Posts: 2
Joined: Sep 2014

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

kinikiamalia
Posts: 3
Joined: Apr 2011

Hi fellow survivors.

Im new to this site today and happy that there are some women I can correspond with on this topic.
I was diagnosed a year after I started having pain in the area of my right ovary.. An Ultrasound was done in May 2009 but showed nothing. An Irregular Pap in August 2010 alerted my GYN to possibility of cancer. A Cat Scan showed a tumor on my Ureter that was blocking my right kidney. I had a full hysterectomy and tumor debulking. The diagnosis was Fallopian Tube cancer stage IV.

Ive had one round of Chemo...6 sessions of Taxol and Carboplatin which is I understand standard treatment for this type of cancer. Had a CAT & PET scan in early Feb 2011 that showed that unfortunately a tumor grew back in same spot during chemo, I just had a second surgery to debulk tumor and take tissue to send to Caris labs for testing to see what chemo will be effective.

Ive been doing a lot of research and reading now and have decided that Im going to approach this very differently this time. Im going to meet with the folks at Block Center for Integrative Cancer care near Chicago in early May. Dr Keith Block wrote an excellent book called LIFE OVER CANCER. They customize your treatment based on a sixteen page questionnaire I filled out. It includes diet as well as stress reduction and mind, body spirit techniques, also nutrition counseling also delivering the chemo when your body is receptive to it based on your natural cycle. The great hope in seeing them is that their survival rate is nearly double that of conventional treatment.

One thing I have cut out is sugar and meat. From the books i have been reading they could actually be feeding my tumor. I had huge cravings for sugar during treatment and had no idea that my diet might affect the tumor. Good article on this topic to read in NYT magazine April 13th 2011 on Sugar as a toxin, for diabetics as well as cancer.

As you can tell, Im more into Mind Body Spirit approach but have and will work with my conventional doctors. I now believe that I have to make the choice of whats right for me.

Ive found that my attitude is the most important thing that has kept me going and the support of family and friends has made me feel as loved as I have ever felt in my life. I feel grateful that my cancer was found and that I am finding the right people to connect with and treat me.
If anyone has any experience with Block center please share it.
Aloha,
Cynthia

Lea19
Posts: 31
Joined: Aug 2009

I wondered how you were doing? I agree that a positive attitude is very important.
My doctor does not think I would still be here if it weren't for my positive attitude.

Please let me know how it goes after seeing Dr. Block.

Good Luck,
Lea

FTCTC
Posts: 1
Joined: Sep 2011

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.

lovinglife51
Posts: 9
Joined: Apr 2012

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.

debrajo's picture
debrajo
Posts: 792
Joined: Sep 2011

Of course Dear! Depression is a biggie,gaining weight for me was a biggie. I thought one of the few perks of having cancer was that I would probably get skinny...wrong! With the steroids and Benedryl I actually gained 30 pounds, was, and still am, hungry all the time. I don't have Fallopian cancer, I have UPSC,another rare one, same grade and aggression as you,1a,c, also same drug. Six rounds of Taxol and carboplatin and 5 rounds of internal radiation. I am also from Texas, and going outside is sheer insanity! I am 26 months out of chemo and all the hair came back except my lashes. I sure did find out those things are not there for beauty! With the wind and the dirt and the heat here in Texas I always have trash in my eyes! The taxol has given me deep muscle and joint pain that has not completely gone away yet and makes walking hard. I also get out of breath and sweat like crazy even though I had gone through the chance several years before all this. There are soooo many with symptoms like ours. If you havent already, check out the Overian board and the Uterine board where I am. We cyber-stalk each other all the time! Sometimes I find that a small box fan going all the time around you helps me more than anything, it also seems to help me breath. Let me know if I can help with anything. Best, debrajo

Lisa in N.J.
Posts: 3
Joined: Aug 2012

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.........

louvarn
Posts: 1
Joined: Jul 2011

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.

Lisa in N.J.
Posts: 3
Joined: Aug 2012

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.

Lisa in N.J.
Posts: 3
Joined: Aug 2012

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.

betsy aaron
Posts: 2
Joined: Sep 2014

Hi Delores,

 

I f it's any comfort, I was diagnosed in March of 02, stage 3C and so far , so good. My CA-125s have been consistently low. 

I wish you all the best.

 

Cheers,

betsy

 

Freckles0808's picture
Freckles0808
Posts: 4
Joined: Oct 2014

Hi Dolores,

I am a FTC survivor. I was diagnosed stage 3c in March 2014 during an emergency csection. I was 28 yrs old and pregnant with my second child. I had a TAH/BSO and 18 wks of chemo. My CA-125 went from over 3000 to less than 20. In August of this yr, I was found to be NED. I have my first 2 month check up tomorrow. I'm so nervous and anxious about recurrence. It seems inevitable. It's such a scary life to lead. Just know you are not alone. I actually worked closely with a woman from the national cancer foundation to design a ribbon for FTC. I chose the inside of the ribbon to be zebra for rare and the outside lined in dark purple. I will post a pic. It really bothered me that we didn't have our own ribbon! We do now!

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