So scared

Hi Tinker

I was diagnosed May 2013 CA# = 4,000  4" tumor on left ovary after chemo & debulking CA # = 16  I was declared with no evidence of disease NED Apr 14 & have been on a three-month checkup schedule since.  aklthough it ifs hard to residt the urge to google - most of what you read must be taken with a grain of salt. Much should be ignored.  I realize there may be a recurrance.  quite common  if it ddoes return I will againfight this-- until then, I will live life  & accept I will probably live the rest of my life dealing with this.

scientific statistics are niot for we lay people but for docs & scientists. as with all averages the swuccesses aloing with the negatives are taken into account.

there are many many success stories.  I personaly know oiof a 10-yr survifoir who is no loingere being monitored. on this board  we recently had posts from both an 8 & 9 yr survivor.

Althiough, it is an ugly disease - it is not an automatic death sentence

ine thing I klearned from this board that really helped me - wwas knowing the protocol of my tx was the same as everyone's - telling me the protocol tx for ov ca is pretty standard

I am blessed to be in Alberta Canada where we have universal health care noi out-of-pocket cost ( could be called socialist - but I call it life-saving I re ceived my care at Tom Baker cancer center ( part of the Universary of Calgary - it rivals the likes of MDAnderson in Houston.

the treatments , constant appoinments& bd tests are not fun - but doable - esp knowing you are wowking in kicking iyour cancer to the curb.

"no amount oif worry willchange anything.

Sausan P from Southern Alberta Canada &TX& WY

PS take care of yourself sleep  plenty of fruits & vegetables - yiour general well-being willk help in your fight

Tinker,

I was diagnosed IIIc in February, 2011 and am doing well--not in remission but with minimal disease.  My life is happy, full and active.

Please don't pay attention to gloomy statistics; we are individuals who frequently defy statistics, and new medical advances and treatments appear all the time.

Today cancer is regarded as a chronic disease to live with, not necessarily to die from.

It is normal to feel scared and depressed sometimes.  I hope my comments have helped!

When a tumor was found encompassing my ovary, I was found to have metastatic appendix cancer.  The ovarian tumor had originated in my appendix.  I spent a hellish year with surgeries, intraperitoneal and systemic chemos, but am now fine - 8 years later!  You need to remember that statistics do not apply to individuals; they apply to groups.  Statistically speaking, I should never have had appendix cancer.  The likelihood for not having appendix cancer is about 99.999%.  I'm in that .001%.  There's no saying which group you'll fall into statistically. 

As newly-diagnosed, everything is fresh and terrifying.  Things will calm down, and while cancer is now a permanent part of your life, it doesn't have to define you.

Wishing you all the best,

Alice

I'm a nine year survivor diagnosed 3C in May 2006. I won't tell you not to feel scared trying to come to grips with all that you have had to deal with. I can tell you that a CA125 of 19 is so good. Much of the statistics that you read about on the Internet is old and outdated info. More and more of us are living and thriving far longer than those statistics show. You have come to the right place for help and understanding. ((((hugs)))).  Maria

Susan P said:

so scared

Hi Tinker

 

I was diagnosed May 2013 CA# = 4,000  4" tumor on left ovary after chemo & debulking CA # = 16  I was declared with no evidence of disease NED Apr 14 & have been on a three-month checkup schedule since.  aklthough it ifs hard to residt the urge to google - most of what you read must be taken with a grain of salt. Much should be ignored.  I realize there may be a recurrance.  quite common  if it ddoes return I will againfight this-- until then, I will live life  & accept I will probably live the rest of my life dealing with this.

scientific statistics are niot for we lay people but for docs & scientists. as with all averages the swuccesses aloing with the negatives are taken into account.

 

there are many many success stories.  I personaly know oiof a 10-yr survifoir who is no loingere being monitored. on this board  we recently had posts from both an 8 & 9 yr survivor.

 

Althiough, it is an ugly disease - it is not an automatic death sentence

 

ine thing I klearned from this board that really helped me - wwas knowing the protocol of my tx was the same as everyone's - telling me the protocol tx for ov ca is pretty standard

I am blessed to be in Alberta Canada where we have universal health care noi out-of-pocket cost ( could be called socialist - but I call it life-saving I re ceived my care at Tom Baker cancer center ( part of the Universary of Calgary - it rivals the likes of MDAnderson in Houston.

 

the treatments , constant appoinments& bd tests are not fun - but doable - esp knowing you are wowking in kicking iyour cancer to the curb.

 

 

"no amount oif worry willchange anything.

Sausan P from Southern Alberta Canada &TX& WY

 

PS take care of yourself sleep  plenty of fruits & vegetables - yiour general well-being willk help in your fight

I am in Calgary too. I had adenomyosis and a hysterectomy.  They left both my ovaries as I'm only 43 and one fallopian tube as it was badly scarred from when I had donated a kidney years before.  The gyno said he tried to remove the tubes as ovarian cancer tends to start in the tubes but couldn't as it was like glue from the scars. 

 I had pain in my left side in March 2015 noted by my new family Dr.  He sent me for a CA125 and it was 53.  My cyst was average size then. And my one fallopian tube I have left was inflamed.   2 months later on May 23, cyst was the same size but my CA125 was 191.  Now he's rushing me into surgery for June 26. 

He says maybe either ovarian cancer or endometriosis...funny, I've never had endometriosis! He said the cyst was caused by my inflamed fallopian tube.  Also that he is involving a cancer specialist for my case.

I have symptoms like very urgent, pressing and frequent need to urinate, lower back pain and of course, pain in my lower left abdomen where my cyst is.

I burst out in tears when he told me all of this over the phone.  I was at work.

I'm so scared now.  Not sure how to cope other than rest, sleep, eating well, prayer and meditation.

PattyMarie said:

Hello everyone,
I am new

Hello everyone,

I am new here and have been getting such encouragement from what I have been reading from all of you. I was diagnosed Nov 2014 with stage IV ovarian cancer with CA125 of 6,000. I had the pleural effusion (over 2 liters on each side) and the abdominal bloating. I am scheduled for my hysterectomy and de-bulking this Friday. I have been getting chemo since Dec to try to reduce bloating so I could have surgery.

Then I developed a DVT and bi-lateral pulmonary embolism, which held off the surgery even longer.

As is everyone, I am scared about the outcome. That's why I am awake at 4:30am.

Susan, your words made sense and were so encouraging, thank you!

Thanks everyone for listening, it really helps to talk with people who completely understand what you are going thru.

 

 

Hi patty Marie , I think everyone waiting for such major surgery is terrified , but I was surprised it was no where as bad as I was expecting ( 3 day hospital stay)and the relief of having those tumours out of me made me feel like I could get on with the remaining chemo and get rid of the residue , my bloating got so much better after debulking too . I think all of us find strength to get though this , I am 48 and was dx 3c and am currently a 14 months out , just waiting for surgery again , my motto is better the tumours out than in ! I wish you lots of love and will be thinking of you Friday here in England . Jue x

HomespunLaura said:

Be HAPPY

 

I am a 5 year survivor, 3 rounds of chemo and currently on Taxal. I will be very blunt. I have seen so many like you waste your life By forgetting to live it. There have been so many advances in treament over the past 5 years! So many new drugs!

I have made fun of cancer! When my hair falls out in the summer I shave my head and stick it out the window of the car on hot days enjoying the air rush over me! It's great! i laugh at the fact I got cheated and gained 150 lbs. instead of losing weight! I tell myself I have been through tough times before I will get through this! It's rough knowing I may never know my grandchildren or see my children married, but heck I could walk out my front door in the morning and get run over by a garbage truck! Now I am too tired to get up early enough to see a garbage truck. Lol. At least now I know I need to get all those projects done, now. I have finished several that I wouldn't have if I continued to procasternate, or got run over by a garbage truck.

You can either live every moment to the fullest, finding happiness in meeting and appreciating all the wonderful new friends and the comrodery they will provide you or you can be sad about what has not happened and have people avoid you because your attitude makes it too uncomfortable to be around.  

Try starting off setting an alarm every 4 hours, when the alarm goes off think of something positive that has happened during that 4 hours. It can even be that you are still alive! But try to think deeper, find the little things, the person who smiled, the flower that was a pretty color, the way light shines on the window, and the wonderful nurses, doctors and patients you meet. Finding happiness will make you live longer. I tell everyone I am going to live to be 105! I focus on that, it has kept me going 5years.

NOW SUCK IT UP BUTTERCUP! ENJOY TODAY! Cry if you must but then enjoy your life! 

HomespunLaura, I agree with your sentiment of living every day to its fullest, but some of the words you chose may be a little harsh to some people's ears.  

In some regards, I do think I have been very lucky to really see what is important from this perspective, and I think a lot of other women on the gyn boards would agree.  However, I don't think it is easy and it doesn't mean we have to like it.

I see you have just joined, so I am sorry you have had to find us, but welcome.  All of these boards are an open dialog and we all say things differently.  What is written is sometimes misinterpreted by people.

Congratulations on 5 years!  I wish you at least 5 x 5 healthy years in the future.

NoTimeForCancer said:

HomespunLaura, I agree with

HomespunLaura, I agree with your sentiment of living every day to its fullest, but some of the words you chose may be a little harsh to some people's ears.  

In some regards, I do think I have been very lucky to really see what is important from this perspective, and I think a lot of other women on the gyn boards would agree.  However, I don't think it is easy and it doesn't mean we have to like it.

I see you have just joined, so I am sorry you have had to find us, but welcome.  All of these boards are an open dialog and we all say things differently.  What is written is sometimes misinterpreted by people.

Congratulations on 5 years!  I wish you at least 5 x 5 healthy years in the future.

You maybe right, NoTimeForCancer.  During several discussions in the chemo room  I was told by others fighting this battle that bluntness is best. Quickly finding that positive attitude can make all the difference in turning ones body into a cancer fighting machine! Everyone agreed that you must avoid feeling dispare it can become a habit quickly. I don't know any other way to give advise like this with urgency, I feel there is no time for candy coating. We  MUST find that positive attitude quickly to fight this terrible disease! A positive attitude added years to my life's battle with cancer. Being told to  "suck it up buttercup" not only made me smile but helped me to focus on all the positive things life gives me.This has been the best advise I have ever received. I am truely sorry if my bluntness hurt anyone's feelings.  I still stand by my statements. Elevating ones mind set improves ones immune system. It is urgent that we work on this every minute of everyday. 

HomespunLaura said:

apologies

You maybe right, NoTimeForCancer.  During several discussions in the chemo room  I was told by others fighting this battle that bluntness is best. Quickly finding that positive attitude can make all the difference in turning ones body into a cancer fighting machine! Everyone agreed that you must avoid feeling dispare it can become a habit quickly. I don't know any other way to give advise like this with urgency, I feel there is no time for candy coating. We  MUST find that positive attitude quickly to fight this terrible disease! A positive attitude added years to my life's battle with cancer. Being told to  "suck it up buttercup" not only made me smile but helped me to focus on all the positive things life gives me.This has been the best advise I have ever received. I am truely sorry if my bluntness hurt anyone's feelings.  I still stand by my statements. Elevating ones mind set improves ones immune system. It is urgent that we work on this every minute of everyday. 

I do practice gratitude but like your idea to intensify it by setting a timer and finding something in set periods of time.  The little things count.  I'm gonna try it.