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Fallopian Tube Cancer

KarynB
Posts: 3
Joined: Mar 2003

My mom was diagnosed with this after having a radical hysterectomy to treat a stage 2 adenocarcinoma cervical cancer tumor. They discovered she also had adenocarcinoma of the left fallopian tube and precancerous cells in the right. Because it was found after the surgery and not staged properly, the drs decided to treat it as a stage 3 cancer and she underwent 6 rounds of chemo.

We have never met or known anyone with this kind of cancer. Does anyone have any experience with this at all? They did tell us she had two simultaneous primary cancers and that they were unrelated but I'm not necessarily confident in that opinion even though our second opinion agreed with the first. Primary fallopian tube cancer is extremely rare and it would be great to compare notes with someone on the subject.

Thanks!
KarynB

DianaF
Posts: 5
Joined: Feb 2003

Hi Karyn!
I was sorry to hear about your mother's cancer and hope she is doing alright with the chemo. I know how difficult it is for both of you, especially because the fallopian tube cancer IS so rare and even the doctors don't know too much about it, much less what the prognosis is. But, just wanted you to know there are a few of us survivors out here...I was diagnosed with primary fallopian tube cancer, stage IIb (both tubes, ovaries and I guess a bit of extension somewhere in the pelvis(!), but negative lymph nodes), last year, had a staging laparotomy, hysterectomy, etc, and six rounds of chemo (Taxol and carboplatin) and am doing well now. I think the most difficult part of the diagnosis (fallopian tube cancer) is that most people have never heard of it and obviously, few people get it, so it's pretty hard to find "support". Incidentally, about six years ago I was treated for "precancerous" cervical changes (secondary to human papilloma virus). It does make one wonder if the two are related, but no one knows.
If you would like to "talk" to someone who definitely does know what your mother is going through, I'm here :o)
Best wishes,
Diana

KarynB
Posts: 3
Joined: Mar 2003

Diana- Thank you so much for your reply. I'm sorry I haven't responded earlier... I was having trouble with my computer and posting in general. I told my mom your story and she would love to email you or even just chat here on this thread. You are right when you say the hardest part is the rarity of the cancer. No one else has it and no one quite understands the feelings that come with this particular diagnosis. I am sooo happy to hear you are doing well. That is wonderful!

I hope you check this soon as we would love to hear from you. My email is kaykota2@yahoo.com.

Thanks Diana!
Karyn

Cherylynne
Posts: 1
Joined: Mar 2004

Hi Karyn

Hope your mom is doing OK. I am new to the board and just started searching for others with fallopian tube cancer.

I was diagnosed with fallopian tube cancer March of 2003 . I underwent hysterectomy and all sorts of other tests. Fortunately the cancer had not spread. I underwent chemo and had the usual side effects. I had my last chemo treatment in July of 2003 and am doing well.
Fortunately I have a loving family that offerred all sorts of support and also I have my faith in God that got me though.

My e-mail is crhodes@frontier net.net I hope to hear from you regarding your mother.

Cherylynne

KarynB
Posts: 3
Joined: Mar 2003

Hi Cherylynne- Thank you for your email. I'm so happy to hear you are doing well after your treatments. I've written your email down and would love to compare notes with you, as I'm sure my mom would too.

She is doing well and her tests are clear knock on wood and thank God! Her last chemo treatment was Oct 2002.

I'll email you when I get a chance so we can compare notes.

Di- How are you doing? I haven't heard from you in a long time. Do you still have my email address or my mom's? Send me a note and let me know how you are doing, either through here or over email. Take care!

Karyn

all4mom
Posts: 8
Joined: Feb 2005

Hello, my mother was diagnosed with fallopian tube cancer 2 years ago. It has been terrible on her. She has had 3 surgeries already, and chemo is not working for her! Currently she cannot eat solid foods, she is only 56 years old. She is currenly under a research program, "God, I pray that this will help"! My heart goes out to all that have this terrible disease.

Sueja
Posts: 2
Joined: Aug 2005

Hi, I am new to this site, my prayers are for your mother and your family. We just found out the my sister who is 58 has stage iv fallopian tube cancer. She had surgery in mid-July, she is having a really bad time. She is in a weak condition from the surgery and it is not healing from her incision(she nows has an infection) me and my other 2 sisters are just stunned, we pray everyday for her, my brother-in-law, my niece and nephew. My sister was eating some solid foods but as of today is having a hard time eating. She can start any chemo until she gets her strength back and incision heals. I don't know anybody who has gone though anything that is so devasting.

jeanniemet
Posts: 1
Joined: Mar 2005

I am praying that your sister is getting her strength back and is healing. Fallopian tube cancer IS extremely rare. My gyn told me that in 25 years of practice, he had never had one case until mine. And he found mine by a fluke. I had been having spotting for about 8 months off and on. I went through ultra sounds, and other tests I can't remember the names of and nothing showed any sign of cancer. At one point, he thought he had found a weak spot on the cervix that he could make bleed by rubbing on it, so he treated it with cryotherapy which did not have any effect on the spotting. In fact it was geting worse. So, I told him that I would just as soon have a complete hysterectomy and get that "bomb" out of there. He agreed that it was the only thing left he could offer but first wanted to do a laparoscopy, which is when he found the fallopian tube tumor, stage IIIc. He sent me to a gyn/oncologist, I had the complete surgery next day (11/17/04) including removing the omentum. The lymph nodes removed were not cancerous. My CA 125 at that time was 102. My surgery healed well and I did a 6 treatment chemo (Taxol and carboplatin). My CA 125 started dropping immediately and is staying around 11 or 12 since then. The chemo was relatively easy on me and I had great support from the medical profession, friends and family. The interesting thing is that on the same day I went to the gyn/oncologist for orientation for the chemo, I met another lady who had just been diagnosed with fallopian tube cancer. We compared stories - she is 10 years younger than my 68 and we were both on HRT for 10 years and both had the same spotting.

rose05851
Posts: 1
Joined: Oct 2005

I hope this gets to you.
My mother has stage iii c fallopian tube cancer.
The Visiting Nurses used something called a "wound vac" on a gaping hole in her incision left from the removal of a clot. Over the course of a month, it has shrunk from the size of a nectarine to the size of a large almond. Maybe you can ask about such a machine.
Keep her hydrated and maybe try Ensure or Boost. Mom also has no appetite.

all4mom
Posts: 8
Joined: Feb 2005

After a long battle with fallopian tube cancer, our mother passed away on September 10, 2005. GO WITH GOD MOM, WE LOVE YOU VERY MUCH!

buckrose
Posts: 1
Joined: Mar 2013

I was diagnosed with 3c fallopian tube cancer in Nov of 2011.  In '08 I had had a vaginal hysterectomy because of spotting and a diagnosis of pre-cancer.  After the hysterectomy it was discovered that I had an adenocarcinoma in the uterous which they found in the pathology.  I was told I was fine and the cancer gone BUT the gyn left my ovaries and fallopiean tubes because he said they were atrophied and would never cause a problem.  At that time, I was 60 ish.  They only recommended followup was a yearly CT scan.  My gyn retired in 2010 and I went to a new gyn in 2011.  I explained my history and at that point he said I probably didn't need a CT, since I appeared so healthy, but decided to order one since I had been told to have it.  I asked the tech who did Ct how long it would take for my DR to receive results and was told a few days.  Imagine my surprise when the DR called later that afternoon with some puzzling news.  He said there were "densities" showing in my abdomen and wanted me to go have another CT.  He also ordered a CA-125  which was low.  I had 2nd CT, again, same densities, so he ordered a biopsy.  They did the biopsy above my navel which showed high nuclear grade cancer cells but they were undifferentiated so the source could not be determined.  He then searched for the best gynological oncologist in our area who saw me and was pretty convinced I had metastatic ovarian cancer or peritoneal cancer since my tests were so skewed.  He explained that we were going to treat it as if it were ovarian cancer until we discovered differently ( BTW, this guy is listed as on of the top ten gyn-onc in the country).

I had 4 rounds of IV chemo ( taxol and carbo) then a Pet scan which showed the tumors had shrunk significantly.  My Dr was very encouraged.  Then I had debulking surgery that included the ovaries and fallopian tubes, as well as lymph nodes and he removed the omentum.  At that point because of the pathology they were able to discover that it was fallopian cancer.  (Remember those ovaries and fallopian tubes left by previous Dr?  They were alive and well and causing cancer!)

During the surgery the Dr. inserted an abdominal port for IP chemo to be done as a follow up and clean up to surgery.  I underwent a total of 9 IP and IV treatments of taxol, carbo and cisplatin.  Very difficult regime, but worth it with 2nd PET scan that showed I was cancer free.  

It has been 9 months since the last PET scan.  I have worked hard to reestablish a "life after cancer."  I had the port removed, my hair is back, my blood count normal.  I generally do fine until my 3 month ckups.  Then I get a little neurotic.  I have developed an incisional hernia which is annoying, but so far so good.

 

VanessaF
Posts: 1
Joined: Apr 2013

Hello,

My mother has a similar situation. She was diagnosed with stage 3 cancer of her fallopian tube. She was feeling weird with bloating and back pain for a few weeks, finally went to the doctor, and since cancer runs in the family they did a ca125 blood test. Results came back positive with alarming numbers. She had a catscan that showed a large mass. The monday right after, my mom went in for emergency surgery which included removal of the mass, hysterectomy, and part of the intestine and the omentum I believe. The doctor originally said he believed it was Ovarian cancer, but when the results came back he said it was in her Fallopian tube.

 

She is still recovering from surgery and is about to begin her chemo.As the daughter of a mother who has been an unbelievable example of a human, I was devasted but am now hopeful and positive that she will be able to fight this. She is 65 and healthy and your words were very encouraging. Please keep my mom in your prayers as I will keep you in mine as well as all others fighting this battle.

mamajc
Posts: 22
Joined: Jun 2013

I have really enjoyed reading your post regarding your diagnosis and treatment response to Fallopian Tube Cancer; you have given me hope.

Last November, I was diagnosed initially with Ovarian Cancer when they found a large tumor in my abdomen and a Ca125 of 1846. At that time, I had tumors caking my bowel, omentum, and peritoneal cavity; they were inoperable. They did remove 3-4 liters of fluid out of my abdomen and then started me on dose dense taxol chemo regimen. I would have carboplatin and taxol every 3 weeks followed by weekly taxol infusions. After 9 weeks or three cycles, my ca 125 dropped to 34 and they were able to remove my uterus, ovaries, and fallopian tubes in addition to my omentum. The caking on my bowel had disappeared and they didn't have to do a bowel resection nor remove my appendix. My pelvic lymph nodes were negative for disease as well. However, they did find that the source of my cancer was my left fallopian tube, not ovarian as they had thought.

After healing from surgery, I continued on the same chemotherapy. I just finished up my last taxol treatment last Saturday. ... My only regret is that I was unable to have intraperitoneal chemotherapy like you had....it is supposed to be the most effective for long term survival.

My last ca 125 was 8. My last cat scan in May was NED.... (next one is in August).

I did well with the chemotherapy. I have a bit of numbness in my feet and tip of my right thumb. I took glutamine supplements after my second surgery (10 grams three times a day) and I think they prevented more neuropathy from developing. I also did some cold therapy to my feet and hands during the taxol infusion (not consistently) and I think that may have helped as well.

This has been a difficult journey, but the support of my family, friends, and coworkers have made it bearable. I am so grateful to their love and prayers. I am so grateful to be alive.... I look forward to celebrating our 32nd wedding anniversary in October. My daughter will be a senior in high school this year and my son starts his 2nd year at our community college...

Life is wonderful... I am so glad to be alive! :)

Cafewoman53's picture
Cafewoman53
Posts: 732
Joined: Jul 2010

  Wow I knew it was a rare cancer but by the small amount of posts it really hits home as to what that means. I was diagnosed in June of 2010 during a hysterectomy for benign uterine poylops. Something was wrong so I talked my dr. into the operation but she must have had some inkling something was wrong. it was 3c but very high grade ( very aggressive )  knock on wood I am still fighting it. So glad to hear you are doing well.

Colleen

 

mamajc
Posts: 22
Joined: Jun 2013

I so appreciate being able to connect to someone who also has this. It is discouraging when there is so few posts on this board. I have gone on ovarian cancer board a few times.... I guess that they are similar to each other...and that is what they thought I had initially before they were able to remove everything in February.   I hope you are doing well.

I know this sounds stupid, but I feel nervous being off of chemo. Last Friday, I had another catscan and a lab draw. I started to cry a little bit during it.  I kept thinking what if it comes back.. It was everywhere in my peritoneal cavity.

I go back to the doctor for results next Monday. I have been trying to stay busy and not think about it. I just need to trust God to see me through this. He was my strength for the last 9 months... I just need to stay positive. The anticipation is awful.

Did you ever have neuropathy from your treatment? How long did it last? My joints have been stiff and a little sore which is new since I have been off of chemo. Is that normal? I have also had swollen feet and ankles off and on... but maybe that is because I have been up more. Before my catscan, they drew blood for kidney function tests.. I wonder if it is associated with the swollen ankles...

What type of treatment are you receiving right now? How has it affected you? The only chemo I have had is carboplatin and taxol. My doctor didn't want to put me on avastin. He thought I could possibly rupture my bowel; my cancer initally had coated everything.

I have two friends with ovarian cancer. One is stable or remission and is on femera every day. I guess it works like the medication they give to breast cancer patients to block estrogen production.Her cancer presented differently than mine did. Her Ca125 never became very high and her only symptom was constipation. 

Another one just went into remission again.Her first treatment was regular carboplatin and taxol every 3 weeks. She was in remission for a few months and then it returned. I think she was on avastin and another chemo that starts with a g. She has "clear cell". It is really aggressive. They are going to give her avastin once a month.. like a maintenance treatment.

If my cancer returns, I am concerned about what treatment options will be available to me. I have had reactions to the carboplatin three times now. I didn't have a severe reaction, I just itched everywhere. I don't know if it will be an option.....

For now I am trying to enjoy time away from treatment... and adjusting going back to work...

Joan

 

 

 

 

 

Cafewoman53's picture
Cafewoman53
Posts: 732
Joined: Jul 2010

My Fallopian Tube Cancer was mixed on my pathology report after my surgery, clear cell and serous. I don't know if that is better or worse than just one.

I have been on chemo almost non stop since June of 2010, that sounds awfully and it is but most of the time I am feeling well enough. First I did six rounds of Carbo/Taxol,then the follow up pet/ct scan found an unrelated kidney cancer, after that surgery my doctor put me on Avastin but my numbers started creeping up til they doubled so another pet /ct showed two small areas but. biopsy came back negative my doctor didnt think that was right so she repeated the biopsy in three months and it came back positive. She put me on Carbo/Gemzar/Avastin which worked very well till my back went out and I needed a spinal fusion . After that surgery she did two more rounds of Carbo/Gemzar/Avastin then just Avastin til my blood pressure went sky high and I had to stop the Avastin.

Another pet/ct showed the two spots were gone but there were two new ones. She put me on Carbo/Taxol again but it wasn't working after three rounds so she then put me on Taxotere six rounds weekly and that wasn't working so now I am on Doxil and crossing my fingers!

Dont be discouraged at my poor outcome as my tumors were very aggressive and I am doing pretty good in spite of all this chemo. Oh and I asked my doctor if I should be worried about running out off chemo options and she said no there were plenty more out there yet!  

I do go on the ovarian support board as our cancers are pretty much treated the same, the women there are wonderful and don't care if our cancer is different. If you want I can give you my email if you want to "talk" privately.

Colleen

mamajc
Posts: 22
Joined: Jun 2013

I am amazed at what you have been through! I did well with chemo and it is reassuring to know that you can be on it for quite a while and still have good quality of life. My email is jcweaster@gmail.com if you want to email me.

 

I just saw my gyne/ocn on Monday. My last ca 125 was 8. My cat scan was NED for my abdomen. However, I have a right inguinal lymph node that is getting smaller and the center is necrotic; it is probably a metastasis. He talked about two options: chemo or radiation therapy for the lymph node. He said that since it was necrotic and the chemo will continue to work on the cancer cells even after I am off of it, he thinks I may not need to have it treated. He also said that it is usually the 6 month check that reflects how effective the carboplatin is on my cancer.

So I am almost in remission (?). He mentioned something about maintenance chemo (avastin) for the future maybe. Or if I have a reoccurence, I would get carbo/taxol again. He still expressed concern about the avastin for me; I had alot of bowel involvement.  He is concerned about peritonitis from a ruptured bowel.

I also learned from him that the ca 125 only reflects my cancer in my abdomen. If I have metastasis elsewhere, then it won't elevate. I think that is scary ....

I have returned to work. I think it will help me to keep my mind off of my cancer. But, what happens in 3 months if I get a reoccurence? That would be awful. I didn't work for most of the school year last year. It doesn't seem fair to my coworkers to have to be out again.. I don't know how I would do on chemo with working. Maybe I could do  radiation therapy. I did well on chemo before, but if I have to be taking care of students, I don't know how I will do. Taxol was easy for me but I get really tired after the carboplatin.

 Have you worked at all during your treatment? How did you handle it? Any advice?

I don't mind that I have a scarred up abdomen, no eye brows, and awful looking hair coming in. I don't care if I have numb toes. I just want to see my kids graduate from highschool (daughter), college, get married, and be a grandma some day.

My mom died early and my kids never knew her. I don't want that to happen to my kids' children... And when I start thinking of that, I get really frightened and sad. I know I need to trust God; it is hard tho, not to think of the future. I am trying to take it one day at a time.....

Joan

 

 

 

Cafewoman53's picture
Cafewoman53
Posts: 732
Joined: Jul 2010

My doctor put me on Avastin and my bowel was covered in cancer she couldn't remove it in surgery without taking it all out but the chemo took care of of it. It is a serious drug as they all are but I think worth the risk. The only time I cried in the doctors office was when she told me I couldn't take the Avastin anymore because of my blood pressure problems.

I was already on disability for my back when I got sick so I never worked on chemo. A friend of mine just finished radiation for a couple spots the chemo left and she tolerated it well.

Just look forward you may be one of the lucky ones that enjoys a long remission but know that a recurrence can be dealt with. This is a chronic disease like diabetes that we have to deal with, and better treatments are coming hopefully soon.

Colleen

mamajc
Posts: 22
Joined: Jun 2013

Thank you for your kind words. You are right. It is what it is... something to be dealt with for the rest of my life. I just need to take one day at a time and not think about the future... I can't control it anyway.

You and the others are my inspiration for living life to the fullest and not letting this cancer consume my life. I am grateful for the time I have had so far and I just need to trust God for a good future..

 

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