Survivors?

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 hope

H xx

Hello Hellie,

 I was diagnosed with Fallopian Tube Cancer (Stage 3) in Sept 2004 and had the same treatment as you, with the addition of 7 weeks of daily radiation.  I just had my six month check-up the other day and my CA 125 was 3.2 ( it was 800 prior to surgery) and I had a chest x-ray.  I have not had a recurrance, even though it was expected.  Do you have any questions?

Linda Jean

Hello Linda Jean

Thanks so much for responding to this - I had given up hope a wee while ago that anyone was going to get back to me!  Congratulations on your progress - you are doing really really well and this gives me so much inspiration that I too can be like you - all clear years down the line.... 

I am just wondering how did you keep going soon after your treatment finished?  All I can think about is when is it coming back? - my oncology team have been quite clear with me that there is very high possibilty that it will and I can't seem to divert my mind onto anything else - how did you cope?, did you change your diet?, your outlook on life? any tips practical or not would be greatly welcomed. 

I am also wondering why you got radiation - this was never mentioned to me in my treatment plan - chemo and thats it!!

Hope to hear from you soon again

Thanks

Helen  

I was diagnosed with fallopian tube cancer, stage 3C back in March 2007. Total shock, as was found as result of another surgery I had a month before.  Underwent surgery to remove everything.  Lymph nodes involved, one of which was attached to aorta.  Chemo, 6 rounds of Taxol and carboplatin.  My orginal CA125 was almost 3000.  After chemo was 12.  I was checked every 3 months for a year with CT and blood work.  I now am checked every 6 months.  My Ca125 is up to 31.

My first year was a mental up and down cycle.  I was just do afraid of recurrance.  But now that I have been a year in remission, my mind is more at ease.  However, I am still wondering when will it come back and where..  I just want to live my life the fullest I can as I feel up to it.

 I am also now, although in remission, dealing with what they are calling a side effect of the chemo.  Neropathy, or fibromyalgia and difficulty walking.  This all started with my 2nd chemo treatment and has been getting worse.  I have seen all kinds of specialists and no one can put a finger on the cause of my discomforts.  I see a neuroligist in a week and am hoping he will have some answers.   I was wondering if there is anyone else that has had similar problems?

On 3/30/2009 cashap wrote:

I was diagnosed with fallopian tube cancer, stage 3C back in March 2007. Total shock, as was found as result of another surgery I had a month before.  Underwent surgery to remove everything.  Lymph nodes involved, one of which was attached to aorta.  Chemo, 6 rounds of Taxol and carboplatin.  My orginal CA125 was almost 3000.  After chemo was 12.  I was checked every 3 months for a year with CT and blood work.  I now am checked every 6 months.  My Ca125 is up to 31.

My first year was a mental up and down cycle.  I was just do afraid of recurrance.  But now that I have been a year in remission, my mind is more at ease.  However, I am still wondering when will it come back and where..  I just want to live my life the fullest I can as I feel up to it.

 I am also now, although in remission, dealing with what they are calling a side effect of the chemo.  Neropathy, or fibromyalgia and difficulty walking.  This all started with my 2nd chemo treatment and has been getting worse.  I have seen all kinds of specialists and no one can put a finger on the cause of my discomforts.  I see a neuroligist in a week and am hoping he will have some answers.   I was wondering if there is anyone else that has had similar problems?

 

Thanks so much for your reply - and congratulations on being cancer free for over 2 years thats fantastic.  I am sure the further it is from initial diagnosis the better chance there is of staying in remission. 

Sorry about your side effects - thankfully I came through chemo very well.  I am hoping to return to work in the very near future and get on with my life.  I am determined to stay cancer free forever!!!

Thanks again

H

Hi Hellie,

Congratulations on the success of your surgery and outcome, although I find it unfortunate that some oncologists don't have a better way of communicating when they tell their patients to expect a reoccurrence?

Just posting to tell you that I am a cancer survivor (ovarian), of several years now (35 or so), and like yourself, went through a hysterectomy (total) to remove parts that were affected by the tumor(s) that were found. I didn't however go through radiation (thank goodness), as the doctors initially wanted me to receive, but was put on a very regular schedule of followups, to check for reoccurences. This was considered a rare form of this cancer at the time and I was very young (14). No doubt there are new attitudes, technologies and therapies that are being employed today with good results too.

I wish you all the best on your continued health. Try not to worry about reoccurences, but keep getting regular check-ups, live well and laugh lots!

Hi Helen,

I sent this message last week but when I checked the board today it wasn't there.  I am resending it and hope it goes through.

I know there is no magic answer.  I know all about the worrying. 
I have asked my doctor’s office why they check my blood pressure before
my results rather than after.  It is
going to be high because I am hoping to hear that everything is all clear and
dreading that it’s not.  Every time I
have an ache or pain I think, “is it just a pain or is it cancer?”  I still get anxious before
appointments. 

My doctor told me that other than having cancer I was very
healthy.  I had to laugh when she said
that.  I was diagnosed just before my 43
birthday and was considered young for this type of cancer.  My doctors expected me to have a recurrence also.  From talking to my doctor at my last
appointment, I wasn’t expected to live. 
My doctors kept telling me how amazing I am and I did not understand why
they said that until now.  I guess I got
through everything because I never thought I wouldn’t. I know it isn’t
helpful.  I just did it but I didn’t know
I wasn’t supposed to.  I suppose it was
denial.  My oncologist told me to get
back into my routine as soon as possible and I took that to heart.  I got back on the treadmill a month after
surgery.  Only did a quarter mile on the
slowest speed and it was difficult.  I
continued working out throughout my treatment. 
My doctors couldn’t believe it. 
I guess I kept myself busy and joked a lot about having cancer.  Before I was a bit excessive compulsive
about diet and exercise.  I’m more lax
about it now.  My response to having
cancer was “so much for clean living”. 
I guess I was angry at first because I know so many people that break
every rule of good health and I did everything “right” and should not have had
cancer (if you look at how your told to reduce you chance of getting
cancer).  I guess I have slowed down, I
relax more, and enjoy what I have rather than what I don’t.  I also don’t hold on to anger any more and I
reduced my stress.  I suppose in a way I
needed to have cancer because it has made me reflect on what is important and
what doesn’t matter.

I must say, I was worried that they didn't give me enough chemo.  I didn't get the severe side effects that I heard about.

My doctor said, for me, she thinks the radiation made the
difference.  When I had my surgery,
along with removing the usual stuff, she removed 13 lymph nodes.  When she removed one node, her assistant
thought she removed a kidney because it was so large.  My doctor wanted to make sure if she had missed anything, the
radiation would hopefully take care of anything else. 

On 2/10/2009 Hellie wrote:

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 hope

H xx

Hi Hellie,  I was diagnosed with Fallopian Tube Cancer in June 04 - had
full abdominal hysterectomy followed by 5 cycles of chemo. (I just couldn't do the 6th one, I was so weak)   Treatment
finished Dec 04.  I get pelvic oncology exams every six month to date.  My CA125 presently at 10. FYI
I am BRACA 1 positive too.  I am apparently in remission, (afraid to say cancer free).  My cancer was finally found after a year of my insistence that something was wrong.  I had all the symptoms (abdominal discomfort, bloating, and pain in the pelvic area or abdomen, (including the blood-tinged discharge from the vagina).  I hadn't had a period in 9 years so I knew I had a real problem.  I am feeling good these days.

Keep the faith Hellie, we are a small group of gals that even get this cancer. Hugs, Duffy102

Hello BC

Thanks for getting in touch.  35 years without recurrance - well done you!!

I do know that these things are possible but unfortunately when you are on treatment and in and out of the chemo ward you don't ever get the chance to hear from too many people like you... only those who have had to come back for more treatment.  Thats why I think these forums are fab, as we can make contact with people who like you are doing very well.

Thanks for dropping in and giving me your advice all the best

Helen

Peace and love to all the survivors!

 I was diagnosed with stage 3 fallopian cancer in June 2007 at the age of 40.  For years I think I knew something was wrong, and God finally gave me a doctor who saw it too, I did not have alot of symptoms. It's been almost two years since diagnosis.  I too did the six rounds of chemo, a port in my shoulder and a port in the abodomen, Palitaxal, carboplatium and taxotere <sp> (gosh it sure got tuff the longer it went on!!!), no radiation for me though.  I finished in Oct of 2007, cannot wait for more time to go by so I can feel more relaxed.  I too have many of the physical feelings and emotions that you all describe (anxiety about it coming back etc....) I have found that the more time passes, the easier it gets.   I always wonder that if my cancer comes back, would I do the chemo again? won't it be on an organ that will make it much harder to fight? For now, I have to put those thoughts away, and cross that bridge when I get there....My doctor has been away for a while, and I will finally get to see him at my next visit, i had other doctors while he's been away and do not like them at all, they tell me "when your CA levels go up" what'dya mean WHEN? MY doctor I know would be saying "you are doing great!" and that's it! So, the heck with the doctor dooms, there isn't a doctor I know that has a crystal ball and can read your future!!!! 

 I live on a rollercoaster, weeks of mental wellness and then there will be a week or so of the nagging mind.  Yes my doctor told me how strong and wonderful I was to go through my treatment, you do what you have to do I suppose, put a smile on your face and suck it up is how it ended up for me.  Was not easy by any means!   Yes I had neuropathy, painful in my left toe and hands. ...it has since subsided and only nags me every now and then.  Try not to cross the legs.  I have other problems here and there, occular rosacea now, along with dry eye, abcess tooth......fingers don't want to work like they should etc....seems every few months something else is going on with me. I refuse to go see a neurologist, I will give myself more time to pass by and hope more of the phsyical pain(s) subside, i do not want to be on more medication, I'll take the sleeping and pain pills for now, oh yeah and ibuprofen!  I suppose that is part of the after chemo process as the cells in your body that can rejuvinate try to, and the ones that cannot, well they don't.  Be good to yourself, do what you have to to try and relax.  Do not let the ignorance of others get to you, people do not always understand or know what to say.  Live your life while your health is good, even if we survive the cancer for years and years, there are so many other things that could happen.......love the ones who love you and let the ones who love you, love you.  Live your life is all I've got to say. Have a good friend or partner, or family memeber give you their ear, and talk about your feelings, release it.  Your emotions are important, do NOT ignore them, but learn and grow by them.  Do as much of the things you enjoy that you can.  I love gardening and this year will be so much easier for me to do those things without the exhaustion I had a year ago.  Actually I think I went crazy afterwards, I've bought myself a convertible, I'm going overseas to visit a friend........HAHHAHA! It's ALL good......do it! Live it and love it!

It's not easy, and I guess nobody said it would be......I try to live by the motto that I cannot worry about what is going to happen tomorrow or I won't enjoy today........(it doesn't always work, but it is a start!!)

And no matter what, it is your life to live, not anyone elses, so you live it the way that makes you happy, for you and for nobody else, go with your gut instincts, and do not let other's divert you from what you feel in that gut!   We all get down, but I know we will all get back up, we are strong, and smart, and beautiful, and so much more!!! If you are smiling from the inside, it will radiate to the out and it will then be contagious, and what a beautiful world this is if we can pass that along.......

keep rockin' !