Our cancer forum is a helpful place to gain support from other fallopian cancer patients and their families. Join CancerCompass.com today to research a variety of information and resources. http://www.cancercompass.com/message-board/cancers/gynecological-cancers/fallopian-cancer/1,0,119,38,73.htm Tue, 24 Nov 2009 00:00:00 GMT Tue, 24 Nov 2009 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I was dx with left fallopian  tube cancer in 1991.  I had a total hysterectomy and 10-12 inches of my colon also removed just as a precaution but no CA was found in the colon.. The tumor that was found in side my abdoman was the size of a grape fruit.   My follow up treatment was 6 1/2 weeks of radiation.  Due to the radiation and also all the scraping in side the abdoman to remove any CA cells my left kidney barely functions but my right kidney is good and functions very well.  My left side ureteral tube is what was damaged.  I have been CA free since 1991 and have had a good, pretty normal life.  I do have some colon problems but I have learned to live with them and I do not have a colostomy bag.  Thank God.In August 2009 I was dx with left side breast CA.  I have had a lumpectomy and removal of 5 lymph nodes.  The lymph nodes were all negative for CA.  My follow up treatment will be radiation.  Haven't seen my radiation oncologist yet so not sure how many treatments yet.If anyone is interested.....The above is my CA story.  I feel so lucky to be a Cancer Survivor.  God bless all of you..  http://www.cancercompass.com/message-board/message/all,40436,0.htm bekboo45 Tue, 06 Oct 2009 00:00:00 GMT I have been diagnosed with fallopian tube cancer, surgery 11/25/08 followed up by 6 sessions of taxol and paraplatin.  Had golf ball sized tumor on tube, removed all, including lymph nodes.  Pre surgery CA125 was 44 .  last test was 2.  Will have 3 mo DR check up and 6 month CT Scan. Am looking for recent patients/survivors of this rare disease.  Any updates on your case would be appreciated Doloresl http://www.cancercompass.com/message-board/message/all,39145,0.htm doloresl Wed, 19 Aug 2009 00:00:00 GMT I was diagnosed with Stage IIIc fallopian tube cancer in January 2008. Having had surgery and been through chemo, I worry each time that I have a check up. On my recent visit, the physician told me that my ca125 marker is up but didn't share the #. He's ordered a cat scan, and I'm concerned. Has anyone experienced this? http://www.cancercompass.com/message-board/message/all,36701,0.htm Dr_Positive Sun, 31 May 2009 00:00:00 GMT Today is really not just another dayIt's a great day......because I am here and I got to live today, even if I didn't do anything, I enjoyed not doing anything, I enjoyed hearing the birds sing and I enjoyed seeing my dog wag his tail when he saw me, and I enjoyed saying hi to my friend and asking how her day was and I enjoyed seeing a smile on her face and I smiled back at her........because I could, and I can  http://www.cancercompass.com/message-board/message/all,35381,0.htm LilWing Fri, 17 Apr 2009 00:00:00 GMT Would like to communicate with anyone who has had  fallopian tube cancer or presently has it. I am going through this for the second time around. I have been doing alot of research on how to approach fighting this disease in a natural alternative way. In the past I used the conventional traditional method . Hysterectomy, Chemotheraphy, etc. to no avail.  My surgeon was shocked that it returned. Within 3 years. So I have totally changed my lifestyle. Diet ,suppements,herbs, ozone theraphy & something new Iam using called Betaglucan. I have a positive attitude & I have a strong belief & faith in GOD. Would love to   share      with someone going through the same thing I am . This is the hardest thing I have experienced in my life & I would like to be able to relate with someone who knows what this is like.  Love, Your sister survivor.... http://www.cancercompass.com/message-board/message/all,33894,0.htm 2nd_time_around_FTC Thu, 05 Mar 2009 00:00:00 GMT I was diagnosed with Fallopian Tube Cancer (Stg3c) in June 08 - had full abdominal hysterectomy followed by 6 cycles of chemo.  Treatment finished Dec 08 recent scans are clear & CA125 presently at 12. FYI I am BRACA 1 positive.  I live in fear that it will come back - is there anyone out there with similar diagnosis that hasn't had a recurrence?? Waiting in hopeH xx http://www.cancercompass.com/message-board/message/all,33057,0.htm Hellie Tue, 10 Feb 2009 00:00:00 GMT I just had a hystarectomy 2 weeks ago. My left tube was also removed, the dr said it was in diameter the size of a small cucumber i had all the classic signs before, bloated stomach, excess bleeding for 8 years tried pills had d&c then it was suggested by dr to have the lining burned which worked for 1 year and all symptoms came back with only spotting almost every day for 2 years along with the feeling of peeing my pants at times. My question is are these signs of FTC. can anyone help me i have to go back in 2 weeks to see dr and would like to be informed at least a little. He told in the hospital it's nothing to worry about.Carol http://www.cancercompass.com/message-board/message/all,30162,0.htm Big_Baby Tue, 11 Nov 2008 00:00:00 GMT Hi is there anyone out there with clear cell fallopian tube cancer?  ANyone know the survival rate??  http://www.cancercompass.com/message-board/message/all,29510,0.htm rybar5 Mon, 20 Oct 2008 00:00:00 GMT Has anyone received a PET scan to see if your cancer has spread?? Rybar5 http://www.cancercompass.com/message-board/message/all,28703,0.htm rybar5 Sat, 27 Sep 2008 00:00:00 GMT Has anyone had a node on their aorta?  After my mom's recovery from her fallopian tube cancer, it now appears that she has a node on her aorta....she is putting off a biopsy for two weeks so she can spend the time her her grand kids and take them on vacation.  Has anyone heard of this...and if so, what are the risks/complications?  She has had a full hysterectomy and was treated for ovarian cancer with her fallopian tube cancer diagnosis.  Please give me any information you can to ease my mind.  Thanks! http://www.cancercompass.com/message-board/message/all,26639,0.htm volleyball Thu, 31 Jul 2008 00:00:00 GMT Three years ago, my mother was having difficulty walking and working as a nurse.  Her doctors performed MRIs, Catscans and also ultra sounds and told her she was crazy because there was nothing there(her medical records showed that the obgyn said she was a hypercondriac).  With much persistance, she demanded to have exploratory surgery.  When they opened her up, they found a tumor the size of a thumb in her fallopian tube.  They treated her for ovarian cancer since fallopian tube cancer is rare, they do the same types of treatments.  Needless to say, her follow up exams have been great.  Her last set of bloodwork in April came back fine.  This past June, she broke out with a strange rash and was bleeding from the rectum for 2 weeks.  She ignored this until last week when she could barely walk and vicadon was not working every four hours to stop the pain.  She went for a catscan where they found a node on her aorta the size of a grape.  They want to do a biopsy on this, but she is putting it off so she can go on vacation these next two weeks with her grandsons...I am just at a loss because I cannot bear to see my mom go through this...my dad just cries because he fears losing my mom.  I am praying that this is nothing and she can lead a normal life, but all that I read says otherwise.  http://www.cancercompass.com/message-board/message/all,26641,0.htm volleyball Thu, 31 Jul 2008 00:00:00 GMT Hi I have not seen any new activity for fallopian tube cancer.  Is everyone doing OK.?  Anyone is remission and how is everyone feeling?? http://www.cancercompass.com/message-board/message/all,23928,0.htm rybar5 Sun, 11 May 2008 00:00:00 GMT My mom was first diagnosed with stage 3c fallopian tube cancer in August of 2005.  They did debulking, a complete hystorectomy and six rounds of chemo (carbo and taxol).  In January 2007 it came back in her lymph nodes.  She did 5 rounds of chemo.  Today (03/19/2008) she called me and her CA 125 is at 80.  It was at 8 so this is not good.  She will have a CTscan on Monday, March 24, 2008 to see what is going on.  My mom is now 73 years old.  She seems to be feeling okay and is in a relatively good mood about what is going on.  I wonder if there is anyone out there who has been on the 3rd round of this cancer and is doing ok?  I really need to feel some hope.  I had a baby on August 11, 2006 (my mom's first grandchild) and want my mom to see her grow up.  My daughter is 19 months old and she really needs to know my mom.  My mom is the most amazing person I have ever known.          http://www.cancercompass.com/message-board/message/all,22158,0.htm Fallopiantubes Wed, 19 Mar 2008 00:00:00 GMT 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     http://www.cancercompass.com/message-board/message/all,18988,0.htm Jaguarbeth Tue, 18 Dec 2007 00:00:00 GMT Hello looking for fallopian tube survivors.  I would love to hear you stories and any advice you can give me on this .   I truly appreciate it.Jeanne http://www.cancercompass.com/message-board/message/all,18095,0.htm rybar5 Mon, 19 Nov 2007 00:00:00 GMT Hi, anyone out there having problems with normal scans, feeling great, looking great and rising CA125's.  I had breast cancer 10 years ago, both removed and reconstructed then5 years ago had fallopian tube, not a metastases, a primary, got it early, encapsulated.  BUT have trouble with rising CA125's.  Have been through Femara, Tamoxifen, Arimidex, the Faslodex shots and still rises, so did a round of just carboplatin.  It dropped like a rock then went up during treatment, to only 31 which is still normal, but in three months it has risen to 48, which is not recommended for treatment, so they say "WAIT" another 3 months, if elevated slightly will still wait, and then if substantially elevated, since I am sensitive to the test (which is supposedly a good thing), then they will do another round of carboplatin and if it rises during treatment they will not add Taxol, thyat nasty thing, they will add a new medicine recommebnded by Dana Farber Cancer Center which you do not lose your hair, no neuropathy and no nausea. I have been blessed I have handled my 3, chemos good.. mostly fatigue and emotinal.  Still walking a lot and staying busy.  Anyhow a friend who had a friend whose CA125's were 15,000 and they couldn't find anything started drinking this all natural, no hormones, anything juice called Acai, berries from the amazon rain forest... her counts dropped to 7500...she is still on it.  Has anyone out there tried it.  it does not interfere with any of your chemo, chemo meds or meds in general...  I ordered a bottle and will try it...  Everytone telle ms I should go to Dana Farber but if I have to do chemo again I can handle it, don't want to but I can, just want to figure this out as I am sure the docs do.  Thanks for any input..... soccergranny  http://www.cancercompass.com/message-board/message/all,16808,0.htm soccergranny Fri, 05 Oct 2007 00:00:00 GMT I'm looking for fallopian tube cancer survivors.  Stage 3-4.  Any out there? charla  http://www.cancercompass.com/message-board/message/all,16737,0.htm charliT Wed, 03 Oct 2007 00:00:00 GMT The long run If you are browsing these pages, I am certain you carry tons of uncertainty and sorrow in your feelings. It is not unlikely that you also develop some repulse by the constant afflictive tone undergoing every word you read about this disease, a tone that constantly undermine our strength, leaving us even weaker to face what is usually a flush of though decisions, doubts and pain.Maybe this is the main reason I kept myself from write in all these forums for such a longtime. However for me these are though times, and they demand though talk.I sincerely had no intention to offer cheap advice. Most of my experience may not apply to everyone. Despite the common nature of this disease, we are all blessed with singularity, making us unique in our beings and above all, in our decisions to manage life.All journeys begun with a tale and this is mine.In 2004 I found out the person I would like to share my life with. My girl in fact was a long time college sweet heart I did not meet for a decade, and despite the years, the flames were there.One year before she was diagnosed with GBM IV, undergone surgery, radio and chemo (Temodar), the whole package you are all familiar to. Despite the odds, I decide to not betray my own feelings, and without second thoughts, started our own life together. I was not naïve regarding the disease. Ironically at that time, I found myself working with radiotherapy devices, and cancer was somehow I daily issue in my professional life.If you already made the counting she is a four year survival, completing five in November.There are no days that were not lived fully and intensely. More than one time, we kept ourselves planning vacations to the very next day. Putting ourselves on the places we dream of, and best of all, living life in every small thing completely. It may sound desperately, I disagree, it was only right.No wonder we got to a point physicians elected her case as an astonishing out-of-the-curve. In 2006 they decided to stop the chemo rounds, afraid of causing some chemo resistance in those remaining cells. This event also brought us to another decision. After consulting each of the doctors involved about their opinion, and also fighting our on demons, we decided it was time to fulfill our dreams with a child.Despite chemotherapy – and after a cautiously wait for its effects to wash out – fertility was not a problem, and in the end of 2006 we found ourselves marveled in front of a two lined home pregnancy test.In fell lines, it is obvious that it is not only joy. Fears were all over us. The remission nightmares mixed with all the parenthood related anxiety, were terrifying.In a dark twist of fate, during the 27th week of pregnancy, one MRI brought dreadful news. It was back.Controlling its evolution in a two week interval, we went as close as possible to a reasonable due date, for a schedule c section. Our daughter born remarkably healthy, after a 35 week pregnancy, and went home after the usual three days stay at the hospital.The very next week we went trough surgery. The tumor was completely removed, and the motor deficits she carried, could be considered mild compared to an expected full paralysis of the right-side. For weeks she struggled in daily physiotherapy sessions to regain her walking abilities and it pay out quickly with her achieving the one goal she promised to herself while in bed at hospital: be able to walk and carry our child in her own arms.It all may sound astonishing, but as I said initially, these are though times.Two months after resection, the tumor is back according to the MRI. There are no other signals of neural damage, despite those remaining from the surgery. Temodar cycles are back, and up to now another round of radiotherapy is out of question due to the lesions it may cause.Summoning, black days.Even in my sleep deprived thoughts, watching the gigantic amount of medicines falling from our shelves strangely sharing the space with baby care manuals, I can assure. There is no reason to change a thing for this disease. It will of course perform a monster alteration in your way of life, but there is no reason to let it alter your being. I choose more than ever to help my girl to find grace in every little moment, despite the blues of uncertainty. Uncertainty itself is more painful than fading away. The tricky task is to catch the moment, hold it tight so it can always be yours. It will end surely. As pain will. And when both ceased, you will have to choose which one you will remember the most. Sincerely, Mazzo http://www.cancercompass.com/message-board/message/all,16533,0.htm Mazzo Wed, 26 Sep 2007 00:00:00 GMT Hi, can someone who has fallopian cancer tell me what are the symptoms before they were diagnosed with the cancer? I have had discharge for over a week now and some irregular bleeding. I read that these could be symptoms of fallopian cancer or uterine cancer. any feedback would be greatly appreciated! http://www.cancercompass.com/message-board/message/all,16383,0.htm curioustoo Fri, 21 Sep 2007 00:00:00 GMT HI are there any fallopian tube survivors out there??  I see a lot of messages but looks like people have not been back on.  I am searching for people to talk to..  My mom was dx.  I hope all of you are doing well and will keep everyone and your families in my prayers. Thanks http://www.cancercompass.com/message-board/message/all,16029,0.htm rybar5 Mon, 10 Sep 2007 00:00:00 GMT Hello everyone I am looking for everyone one with fallopian tube cancer.  This is such a RARE disease and limited information on it.  My mom was dx July 30 by MRI had a hysterectomy with primary fallopian tube ca with mets.  Still a sm remainder on the outside lining of her rectum.  She starts chemo taxol/carbo next week.  She is IIIB and clear cell carcinoma.  Anyone else out there fighting this?  We would like to be armed with as much information that we can.  We hope to raise awareness for this rare cancer affecting our loved ones. ThanksJeanne http://www.cancercompass.com/message-board/message/all,15975,0.htm rybar5 Fri, 07 Sep 2007 00:00:00 GMT Hi, Just wondering if there is anyone out there that is being treated for fallopian tube cancer right now that just needs to vent.  I'm being treated for the 4th time in just over 5 years and I would love to be able to "talk" with someone who could relate. http://www.cancercompass.com/message-board/message/all,10829,0.htm Turtlebugs3 Thu, 29 Mar 2007 00:00:00 GMT Hi, I am Judee and this is my 1st post.  I was told I might post my question on this board since the fallopian board is not quite as active.  My mother had surgery 3 weeks ago and found Stage 3b fallopian cancer.  Her CA 125 number then was 74.  The doctors feel that they got it all.  She is almost due for round 2 of Taxol and the belly wash.  Her CA 125 number today was 35.  The doctor said that it should not be over 25.  What does this actually mean? Thanks, Judee http://www.cancercompass.com/message-board/message/all,8512,0.htm Judeed Fri, 29 Dec 2006 00:00:00 GMT HI, I am Judee and this is my 1st post.  My mother had surgery 3 weeks ago and her CA 125 number then was 74.  They did surgery and feel that they got it all.  She is about to start her 2nd round of chemo.  Her CA 125 number came today at 35.  What could that mean?  The doctor expected it not to be over 25.   Thanks, Judee http://www.cancercompass.com/message-board/message/all,8511,0.htm Judeed Fri, 29 Dec 2006 00:00:00 GMT If you are reading this Britta please let me know how you are geting on with your chemo treatment and whether your CA125 levels have decreased. Have been thinking of you and would really like to know. Judy xxx http://www.cancercompass.com/message-board/message/all,7710,0.htm Judy_nz Thu, 09 Nov 2006 00:00:00 GMT