Researching Fallopian Tube Cancer

Hello:

I found this site and see a number of women on the message board who are dealing with fallopian tube cancer. I recently had laproscopic surgery to check out some masses that were found on an ultrasound and have been told I have fibroids and endometriosis and a hydrosalphinx (water in the fallopian tube). I had one CA 125 test that was 41, and was told it is only slightly elevated by one doctor and a concern by another.

The main focus now is on the tube and whether there may be more going on in that area than just fluid. The doctors want to rule out cancer in the tube which of course, will require open abdominal surgery and complete hysterectomy has been recommended. 

A year ago, I was really not feeling well with intestinal problems and a CT scan was done, but nothing was reported at that time. A year later, another CT scan was done with the recent findings and apparently there was something going on with the tube, just did not make it on to that original report (which of course, has me upset!)

I am interested to know what other women have experienced with their symptoms before they were diagnosed? I had the intestinal problems last year which are better now and more recently, a bit of spotting in between periods as well as the fluid detected in the tube. Any information you could share on what you experienced before your diagnosis would help me immensely. I am trying to make an informed decision given the major surgery being suggested!

 Beth

 

 

 

 

Researching Fallopian Tube Cancer

Hi Beth:

I have been where youve been and know how much stress you must be under.

I was diagnosed with Fallopian Tube Cancer AFTER my hysterectomy which was done because I had passed menopause but I bled from June to December 2006.  I had a biopsy and a D&C and ultrasounds. The ONLY thing detected was severe pre=cancerous cells in my uterus.

When I began bleeding there was a salty, ammoniac smell and honey coloured liquid coming from me.  I do not know if this is symptomatic of FTC but I read somewhere that the honey coloured liquid was. 

I was lucky that the tumour in my fallopian tube had not penetrated the tube.  It was discovered when, after the op, my parts were biopsied but it was Grade 3 so I was very lucky it was found..  FTC was treated by my doctors as Ovarian Cancer because I was told its so rare.  My C125 was 5 at its highest

I was very scared of the operation because I am phobic about needles but obviously very glad that I listened to my instincts and did the operation.  I cannot tell you what to do.  My heartfelt prayers for the best outcome.

Im glad you reached out for support.  I found that very hard to do but very rewarding.  There is a website for women who are about to have or have had hysterectomies.  Hystersisters.  The information, support and checkpoints they gave me were invaluable as has been this website Compass.  Both of them have stopped me worrying about things I couldnt get answers for from my doctors.

I only found out recently that drs look at more than the C125 in your blood test as I was told at my last check up that I didnt have any more stars against my other tests.

With very best wishes

Rauni

 

 

 

 

On 12/20/2007 Rauni wrote:

Researching Fallopian Tube Cancer

Hi Beth:

I have been where youve been and know how much stress you must be under.

I was diagnosed with Fallopian Tube Cancer AFTER my hysterectomy which was done because I had passed menopause but I bled from June to December 2006.  I had a biopsy and a D&C and ultrasounds. The ONLY thing detected was severe pre=cancerous cells in my uterus.

When I began bleeding there was a salty, ammoniac smell and honey coloured liquid coming from me.  I do not know if this is symptomatic of FTC but I read somewhere that the honey coloured liquid was. 

I was lucky that the tumour in my fallopian tube had not penetrated the tube.  It was discovered when, after the op, my parts were biopsied but it was Grade 3 so I was very lucky it was found..  FTC was treated by my doctors as Ovarian Cancer because I was told its so rare.  My C125 was 5 at its highest

I was very scared of the operation because I am phobic about needles but obviously very glad that I listened to my instincts and did the operation.  I cannot tell you what to do.  My heartfelt prayers for the best outcome.

Im glad you reached out for support.  I found that very hard to do but very rewarding.  There is a website for women who are about to have or have had hysterectomies.  Hystersisters.  The information, support and checkpoints they gave me were invaluable as has been this website Compass.  Both of them have stopped me worrying about things I couldnt get answers for from my doctors.

I only found out recently that drs look at more than the C125 in your blood test as I was told at my last check up that I didnt have any more stars against my other tests.

With very best wishes

Rauni

 

 

 

Rauni:

Thank you for your feedback. It is good to hear from someone who actually has been diagnosed with FTC and what you have experienced.

I had read about that discharge you mentioned that went with your bleeding and also have read about a clear watery discharge that is sometimes a sign of FTC. My bleeding seems to be more menstrual and since I am pre-menopausal, it could be from the fibroids. The good news is that since my D&C and the re-establishment of my period, that inter period bleeding seems to have stopped. I am watching things closely.

I also discovered Hyster Sisters when I first started researching this and have found it helpful to both receive feedback and share my insights from the process I have gone through. I also have a sister whom is a doctor and has also given me perspective on my results.

I wish you continued good health and will keep things updated as I continue with my process.

Blessings to you!

Beth

 

 

 

On 12/18/2007 Jaguarbeth wrote:

Hello:

I found this site and see a number of women on the message board who are dealing with fallopian tube cancer. I recently had laproscopic surgery to check out some masses that were found on an ultrasound and have been told I have fibroids and endometriosis and a hydrosalphinx (water in the fallopian tube). I had one CA 125 test that was 41, and was told it is only slightly elevated by one doctor and a concern by another.

The main focus now is on the tube and whether there may be more going on in that area than just fluid. The doctors want to rule out cancer in the tube which of course, will require open abdominal surgery and complete hysterectomy has been recommended. 

A year ago, I was really not feeling well with intestinal problems and a CT scan was done, but nothing was reported at that time. A year later, another CT scan was done with the recent findings and apparently there was something going on with the tube, just did not make it on to that original report (which of course, has me upset!)

I am interested to know what other women have experienced with their symptoms before they were diagnosed? I had the intestinal problems last year which are better now and more recently, a bit of spotting in between periods as well as the fluid detected in the tube. Any information you could share on what you experienced before your diagnosis would help me immensely. I am trying to make an informed decision given the major surgery being suggested!

 Beth

 Beth:

 I was diagnosed w/ fallopian tube cancer in June, stage 3C.  I had no, repeat no, prior physical symptoms.  Last fall I had a pelvic ultrasound to investigate the left ovary (Dr thought it "felt different" during pelvc exam.)  Left ovary was fine but the ultrasound raised a question about the uterus.  I had a D&C, lot of fluid but all tests negative for CA.  This spring I had a slight swelling in right groin, investigation of that in May revealed fallopian tube cancer on the RIGHT side that had come through the inguinal canal and presented externally where I could find it.  So why am I telling you all this--because I had a boatload of tests that showed nothing, all false reassurance.  Your situation sounds like--IF it is cancer--it might still be contained within the tube.  Go after it immediately, with a hysterectomy.  You will either find out it is not cancer, or you will catch it earlier than I did when your treatment options are simpler and more likely to be successful. The complete hysterectomy (removal of ovaries, tubes & uterus plus omentum) will give you about two uncomfortable weeks followed by another four weeks of steady recovery, feeling more tired than usual, etc.  Do it--now.  Don't wait around.  Carol

 

 

 

 

Just an update for you on my health. My primary GYN called today and received the final report from the GYN Oncologist, and they both think this is likely to be endometriosis in my tube. They offered a new alternative which is to remove the tube laproscopically to be sure there is no cancer. This feels like such a better option for me to get an answer to this without having to go through the major abdominal surgery for a diagnosis. Obivously, if there is cancer, that will need to follow but I am okay with that since it will truely be warranted.

Hi Beth,

I have a question about the discharge you had.  Was it profuse?  I have had a watery, honey colored discharge for about 2 years or so.  I have to wear pads constantly and I'm starting to have pain in the lower left abdom. area.  The pain started off and on last summer, and is back pretty strong.  I have a fibroid that is 10cm. I don't think the discharghe is from that. Can you tell me any other sympyoms that you had before going to the DR.?  I have no spotting, just a watery, profuse dicharge.

 Anything you can tell me would be greatly appreciated.

 Thanks!

Gail

 

 

 

I'm sorry!  I replied to the wrong person about the discharge!  New to this forum! I should have directed the question to Rauni!  I'm glad you're doing well!

 Gail

My wife was diagnosed with fallopian tube cancer on October 29, 2007.  She had very few symptoms that would be considered as alarm bells.  She had her annual physical in June with everything being fine.  In August she began to have what she thought were symptoms of an urinary infection.  In September she began having some abdominal pain that she thought was bowels.  She never had any discharge.  We do equine cross country racing and in the first of October she did a 50 mile race and experienced some abdominal pain so she went back into our family doctor a week later.  He discovered a mass around her left ovary while doing a pelvic exam.  He sent her in for an ultrasound.  It showed a 3” diameter mass, again thought to be in her left ovary.  He sent us to a gynecological oncologist who scheduled surgery a week later.  From the time of her ultrasound until surgery in a matter of two weeks her tumor grew from 3” to 4 ½” and had ruptured.  She was at that time diagnosed with Stage 3C fallopian tube cancer which had spread to both ovaries, the lymph system and to an old C-section scar.  She has just completed 5 or her 6 chemo’s.  Her pre-surgery CA-125 was 274.  After chemo number 4 she had a clear CT scan and her CA-125 is down to 10.  It has been a real battle for her.  Ladies, PLEASE, PLEASE, PLEASE, if you have any doubts, have it checked out.  My wife is a nurse and it still slipped by her. 

 

Sincerely,

 

Pacpine

 

Hi Beth,

My mom was dx in 7/07.  She was having post menopausal bleeding and the MD would do D/C and increase her hormone meds.  She also kept complaining of vaginal irritation.  Finally, a U/S was done and showed a dilated Rt tube. She was then scheduled for a MRI 2days prior she was having "leaking" clear/honey non-odorus discharge.  MRI confirmed FTC and she had a Hysterectomy 2days after her 60th b-day.  It was a 3B clear cell adenocarcinoma EXTREMELY rare.  Rt tube completely thru and thru, sm amt in Lt, none in lymphs,  it was on her appendix and small amt  left on the outside lining of her rectum.  She just finished round 8 of 8 taxol and carbo.  The MD says she is in remission and wants one year of taxol to stay in remission.  My mom has been amazing thru this whole process her spirits are fabulous.  Everyone on this site is in my prayers and stay strong through this battle.  My mom also got genetic testing we are waiting for the results and then my sister and I will be tested and my aunts.

Keep your spirits up.

Jeanne

Hi Jeanne:

I sent an update recently to this site but not sure it is posted. My physicians think I have endometriosis in the tube resulting in a hydrosalphinx. Just went through another evaluation and now we are just monitoring this to make sure nothing is "growing." My CA 125 has dropped into the normal range.

 I thank you for your insights and hope your mother continues to be well and remains cancer free!

 Beth