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Sister just diagnosed with fallopian tube cancer

Susans sis Lynda
Posts: 7
Joined: May 2010

My sister found out she had cancer exactly 2 weeks ago today. It started with postmenopausal bleeding in February. She went to the Dr in late March and they did an ultrasound, found that she had a cyst on her ovary, decided to do a biopsy and keep an eye on it. She had the endometrial biopsy about 3 1/2 weeks ago. When the results came in they said it was Uterine Serous Carcinoma. She had surgery today - total hysterectomy and removal of lymph nodes. Doc changed diagnosis to Fallopian Tube Cancer. Doc said it looks like it had not spread beyond the fallopian tubes but will know for sure when the biopsy results come back. Possible staging of 2. CA 125 was normal? Is that normal?
We will meet back with the Doc on Wednesday for the detailed results and the plan. My sister lives in Guam which does not have the facilities to handle these types of situations so they sent her to Hawaii for treatment. Our plan is to stay here in Hawaii until she is able to travel (can't stay here forever too darn expensive) from her surgery and then take her back to Alabama with me for the chemo treatments. What should we expect in the next year or so?
Thanks for your input

Toast
Posts: 33
Joined: May 2010

I am sorry to hear about your sister. I am glad she has you for support!! Nobody gives loving support like a good sister. I am new to all of this too.........so I don't really have any words of wisdom to share. But I want to say you are both in my prayers and I'm sending good thoughts your way!!!

Susans sis Lynda
Posts: 7
Joined: May 2010

Thanks so much for your thoughts and prayers. Are you a current cancer patient or survivor?

Toast
Posts: 33
Joined: May 2010

I am an eight year thyroid cancer survivor that was recently diagnosed with VIN III. Two unrelated cancers - how lucky can one girl get?!? :)
Take good care of yourself Lynda! Being a caregiver is so emotionally and physically draining you need to make sure to look after yourself too :)

Susans sis Lynda
Posts: 7
Joined: May 2010

Oh my gosh, bless your heart. You must be very strong with a great support system. I will add you to my prayers!! You make sure you take care of yourself and keep me posted on your progress, please.

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

Lynda,
Sorry to hear about your sisters dx, but glad to hear she has you there for support...that's so important at a time like this.
A CA 125 is only a guideline useful in certain types of cancers. I'm not sure it's a reliable marker for fallopian tube cancer, but would ask the doc. Same with your other questions, the doc is going to be your best resource for all your questions. Are you sure they're going to request chemo follow up? What kind? Once you've gotten some of these questions answered, others here will be able to fill you in on their experiences. You can also put that particular cancer in the search box her under gyn and something from the past may pop up to help you out.
Keep us posted on what's going on. And continue to ask questions...maybe someone with insite will stop by and be able to help you out.
((HUGS))

Susans sis Lynda
Posts: 7
Joined: May 2010

Thank you for your reply - everyone is so nice and helpful. I'm hoping my sister will use this site when she's feeling better.

I do have a list of questions for the Doc...I'm just not a very patient person. We will meet with the Docs on Wednesday if the labs are back from her surgery. The Doc did mention chemo but did not go into the specifics - he wants to wait for the lab results. I guess I am going to have to work on my patience.

Thanks again.

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

Lynda,
I hope everything goes well for you on Wed. And yes young lady, your patience will be tried to their limits during this journey. Chemo is not a fun prospect and no matter what you read...everyone responds differently. There are some side effects that affect everyone, but others that don't. Keep us posted on your sisters progress.

Susans sis Lynda
Posts: 7
Joined: May 2010

Met with chemo doc this week in Alabama - looks like she will be starting 6 rounds of Taxol/Carboplatin after July 4th weekend. Any suggestions on dos or don'ts before and during chemo. I read somewhere that if you chew ice chips for the first few minutes of the treatment it will help with mouth sores...any other advice?

Any other fallopian tube cancer survivors in the Tuscaloosa or Dadeville, Alabama area?

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

Lynda,
If you visit the ovarian or uterine cancer board with questions, you will get lots of information on Taxol/Carboplatin chemo. It is more commonly used with those two cancer diagnosis'. And those rooms are full of wonderful, knowledgable women. My chemo was platin based, but had different side effects. I'll keep both of you in my prayers during this journey.

Patricias4dragonflys
Posts: 2
Joined: Aug 2010

Hi Lynda, I had Fallop tube CA in 06 and recently had a re-occurance. I did Pediatric Oncology and Hospice for many years yet nothing prepared me for all this - Its different when its you walking the journey and doing the chemo.

A few suggestions, have her eat a high protein meal the morning of chemo, and at lunch ie; nothing big small amounts scrambled eggs, protein drink, etc. Chicken, tuna or bean soup for lunch. Constipation can be a problem -

I am using a Chaga (mushroom tea) and Medical MJ for bone pain and nausea. I tried all the traditional meds (steroids, emend, etc) Haven't had to many problems with mouth sores, salt water rinses and a softe toothbrush are best.

Best remedy is the love and support of family - God Bless

dauntdi
Posts: 4
Joined: Mar 2010

I was diagnosed with fallopian tube cancer in Oct 07 following a complete hysterectomy. My CA125 was slightly elevated prior to my surgery. I received 6 rounds of the same chemos your sister is to receive and I tolerated them pretty well. I am doing great so far and feel so very lucky....every day is a gift. I wish your sister all the best and I know she is already blessed with a great sister.

Di

Susans sis Lynda
Posts: 7
Joined: May 2010

Glad to hear you are doing so well. My sister is hanging in there - she just had her 2nd treatment last week. She is super tired and hasn't been eating well for the last 2 days outside of that she is doing pretty well.
Your right every day is a gift! Live it to the fullest!!!
Thanks for your thoughts! :)

Lynda

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

Lynda,
Let your sister know there are others out here praying for her. It's great that she has a sister like you by her side. Tell her to eat whatever sounds good whenever it sounds good...she needs to keep up her strength during treatments and keep her blood counts up. FIGHT!

Stapcrew
Posts: 1
Joined: Jul 2011

Hi ladies, it's nice to be able to read others expeience with FT cancer. I was just diagnosed yesterday, but have not seen the Oncologist yet. Not sure what stage yet. Here is my story...Ive been a care giver for my sister who has been fighting Ovarian Cancer for 5 years. My other sister was just diagnosed with breast cancer in January and had the BRCA1 gene test come back positive. I decided to be tested as well, and my test came back positive. I had a hysterectomy 5 weeks ago and that's when they found the Fallopian tube cancer. They said it's a Focus. So, needless to say I'm happy I did the Brca1 test and took action. I want to get a bilateral mastectomy, but now have to wait until I see the Oncologist. I am hoping I do a round of chemo and I'm done, but we'll see what the doctor says. What's interesting is that supposedly this is rare, but I was able to find all of you with one search on Google. Thank you all for posting.

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

I didn't find this site until after I was done with active treatment. It definately does help to communicate with folks going through the same crap. I was diagnosed with FT cancer stage 3C in May of 2011.

I have finished chemo and am working on recovering from everything my body went through in the past year. How are things going for you?

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

I sure wish I would have found this web site earlier! Exactly one year ago today, I called my doctor and insisted that we do whatever was neccesary so that I would never have another period. Fibroid removal, along with a D & C, and uterine alblasion was sceduled for early February. It was during this procedure that my CA-125 was found to be elevated (98). I spent the next several months being poked, prodded, scanned, and biopsied. There were 4 lymph nodes in my retroperitonial cavity that tested positive for metastatic smooth muscle cancer, but it wasn't until my hysterectomy in May that the diagnosis was finally made. Fallopian tube cancer, stage 3D.

I started chemo in July. Carboplatin, taxol, and avastin were given on day one of the cycle, with just taxol on day 8 and 15. I got up to round 5 dose 2 before my immune system crashed and nueropathy set in. After a 3 week break, I finished my final round in November. My CT scan in early December came back clean and my CA 125 is down to a 5. I had my infusion port removed on December 28th. That's the day I changed from being a patient to being a survivor.

sarah0909
Posts: 2
Joined: Nov 2010

Hi Lynda,
My mother was just diagnosed with fallopian tube cancer, which pathology took weeks. Prior to her surgery which was for colon obstruction, they though caused by diverticulitis, her diagnostics did not indicate cancers. Her CA125 was normal. She is stage IIIC. I've asked how/why CA125 was no help here, but no answers yet. I will let you know if I hear anything. I hope your sister is doing well and you are a wonderful sister to be so supportive. One of my best friends is from Guam and certainly travel to/from there is expensive and difficult for anyone, even in the best of health. Our prayers are with you, your sister and your families.
Sarah

jeanneryb
Posts: 1
Joined: Jan 2012

HI I am sorry to hear about your sister. STAY POSITIVE.

My mom was dx 2007 3B clear cell FT CA she had surgery and 8 rounds of carb/taxol then one yr maintence with taxol only. She went into remission and Feb 2011 it came back she was offered a clinical trial which gave her chemo only carbo/taxol again and put her into another remission Thank God.. My mom just finished Aug 2011 and gets labs every 2 mos and scans every 3mos. My moms CA 125 was negative prior to her initial surgery. They say this is normal and her ca-125 has remained normal they say it becomes an indicator and it did when her cancer came back in Feb. It went from 18-29 and even though normal still it was an increase. I will keep your sister in my prayers stay stong

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