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12 year survivor

linda1120's picture
linda1120
Posts: 438
Joined: Oct 2010

I just recently celebrated my twelve year cancer free anniversary from stage 3C ovca and wanted to share with all of you. There are longterm survivors, not without side effects, but survivors nontheless. I think of all of you fighting for your lives and remember being there, and want you to know you are never forgotten. I pray for you all and hope one day you too can celebrate 12 years. God Bless, Linda

kayandok
Posts: 1223
Joined: Jun 2008

Thank you for sharing your good news with us LInda!
kathleen

azgrandma's picture
azgrandma
Posts: 577
Joined: Feb 2010

I am so happy for you
God Bless

Karen9182
Posts: 62
Joined: May 2010

Congrats! You are an inspiration. Just what I needed to hear. Thank you for sharing.

kellyh33's picture
kellyh33
Posts: 288
Joined: Jul 2010

Linda, you are so fortunate and you give me some hope for my mom. How are you doing these days?

Cafewoman53's picture
Cafewoman53
Posts: 734
Joined: Jul 2010

Thank-you for sharing with us as I am a little down today wondering how many holiday seasons I have left. Your post was very timely for me !

Colleen

kikz's picture
kikz
Posts: 1267
Joined: Jun 2010

What great news to hear on this Thanksgiving weekend. Thank you.

Karen

Disneynutt's picture
Disneynutt
Posts: 135
Joined: Aug 2009

Me too Colleen. I have been thinking the same thing lately and have been kinda down. It's good to hear about survivors.

srwruns's picture
srwruns
Posts: 343
Joined: Oct 2010

Wonderful.....keep it going

MK_4Dani
Posts: 318
Joined: Sep 2009

This is good to know...how long I have is a constant worry!
Mary

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

It is so lovely to hear if long term survivors, well done you, you are an inspiration to us all. Xx

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

It is so lovely to hear if long term survivors, well done you, you are an inspiration to us all. Xx

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

It is so lovely to hear if long term survivors, well done you, you are an inspiration to us all. Xx

kikz's picture
kikz
Posts: 1267
Joined: Jun 2010

my question too.

Karen

vj1's picture
vj1
Posts: 151
Joined: Jun 2010

Always good to hear news like yours. Of course we are all interested in the details.
Although sometimes there are no "pat" answers--survivors are always good news!

V

linda1120's picture
linda1120
Posts: 438
Joined: Oct 2010

I have to say I haven't really done anything special. I live my life everyday and am a fighter by nature. I was going to survive no matter what, and yet I had friends that felt the same way and didn't. I am a believer and do believe it wasn't my time. I deal with lymphedema daily and have to wear the highest compression garments and use a pump on both legs daily. I have had several (7) huge surgeries for adhesions and will fight this the rest of my life. I can get bowel obstructions, but deal with it and am happy to be alive. I did have a very aggressive surgeon that almost kills you to save you. I have never had a recurrence. I have been told by doctors I am a miracle. Last year I ended up in the hospital with bowel obstructions and had to have adhesion surgery and ended up in the hospital for six and a half weeks. During the surgery my bowel was perforated and I almost died. They had to do emergency surgery and I had to leave the incision open and use a wound vacuum. It was tough, but again I fought with all my might. I guess the best advice I can give you all would be to live each day to the fullest, trust in God, and always fight to survive.

Thank you for sharing with me that it helps to hear from long term survivors. I know it helped me along the way.

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Linda....what treatment did you receive? Did you get IP chemo, or was it strictly IV?

Your story is inspiring, to say the least. I am 14 months out from diagnosis and surgery and it feels like I am just waiting for the other shoe to drop. I, too, am a fighter and a believer. If fighting multiple recurrences is my future, then so be it. I have just three words for my cancer......bring it on, b****.

Carlene

beth1465's picture
beth1465
Posts: 63
Joined: Jun 2010

That is the best news I've heard all day, really lifted my spirits! You are such an inspiration, thank you!!

Beth

grammy to bella
Posts: 16
Joined: Dec 2010

It's nice to hear long term survivors' stories as, of course, we all hope to be one. I am 4 years from surgery and 3C diagnosis. I am on my 5th reoccurrence, but every drug so far has beaten the cancer back and other than the initial chemo, I live a very normal life. Well, new normal, anyway. It's so nice to have people to talk to. I don't like to upset my husband, as he worries constantly.

poopergirl14052's picture
poopergirl14052
Posts: 1148
Joined: Nov 2010

Congratulations on being cancer free. Youngive us all hope. I too wonder what is going to happen to me. I will be goung 12/16 doe my next chemo tx. I had to start all over again after already getting 6tx earleir in the year. My husband shaved my head yesterday as my hair started to come out..and I cry sometimes when i look in the mirror,not because i am vain but because i can see my illness. Mery Christmas to you and your family and continue to fight the good fight

South Jersey
Posts: 89
Joined: Apr 2010

Linda,
Thank you for sharing your story... it has given me such hope. Dec. 10th will be my one year anniversary from my last treatment. I was diagnosed with PPC, stage 3C July 17, 2009.. I worry everyday about a recurrance. I pray you contiue to stay well!

linda1120's picture
linda1120
Posts: 438
Joined: Oct 2010

I wanted to share more of my story since it has helped so many. At age 49, in 1998 I had all of the symptoms of ovca, but just didn't know it. After being sick for weeks and losing weight and not being able to eat, a friend convinced me to call the doctor. By the time they saw me they knew something terribly wrong was going on. They did every test there was and nothing showed, even a catscan, vaginal ultrasound as my gyn did an exam and felt "something." After that came back negative I saw a general surgeon and they thought I had some kind of colon issue. I was scheduled for a exploratory surgery since no test including a endoscope and all kinds of tests had shown nothing. I became so ill and finally got fed up and went to ER due to pain and they admitted me and did a colonoscopy. They couldn't get through and said I definitely needed surgery. Meanwhile my husband ran into my gyn at the hospital and he dropped by and said he thought maybe he should do a ca-125 and was going to mention my case to a gyn/onc surgeon, just in case. I asked my gyn to assist in my surgery. When they opened me up I had cancer from my diaphragm to my rectum and everywhere in between. They called in the specialist and he was able to come and take over my surgery. He did a de-bulking and removed every visible cancer. He is known to be very aggressive and thought to do too much, but I am here twelve years later to tell you about it. I was told it was equivalent to fifteen surgeries. I woke in the recovery to being on a ventilator with my hands tied down. As I struggled the nurse explained to me I had been through a huge surgery and this was temporary. That helped me, yet I had had enough surgeries to know that something was seriously wrong. I tried to stay awake so I could hear what they said and I heard the word ovarian cancer. I knew enough to know this wasn't good. I just kept telling myself I had to survive no matter what and then prayed and asked God to wrap his arms around me and help me get through this. I found out I was stage IIIc and would have to go through chemo. I was in intensive care for four days and had horrific nightmares from the morphine. I really had to call on my Lord and Saviour to get me through this time. I spent two weeks in the hospital, and many months recovering. I had IV Taxol and Carboplatin every three weeks five times. I did well with the chemo, needing transfusions a couple of times and shots to boost my counts. My surgeon did a second look surgery with 200 biopsies five months after the first surgery and every single biopsy came back negative!!!!!!! Once treatment ended and I started to heal and walk and get strong, emotionally I was having difficulty. I was finally MAD! I didn't know what to do with these feelings and told my sister on the phone one day that I wanted to throw red and black paint at a huge canvas! She told me to find a art therapist and start dealing with the anger. I did and it really helped. I also shared with other cancer survivors. I wrote a article for a art magazine sharing about my experience with art and healing. I got involved with a ovca support group, getting it restarted by pushing and calling and telling them how important it was for me to meet other ovca survivors. It didn't help me to go to support groups for breast cancer survivors and that was all there was. I have had severe problems with bowel obstructions and adhesions throughout these last twelve years, but have done what I have had to do and keep on fighting. Last year the bowel obstructions started up again and the adhesions needed to be taken down again. I live in Coeur d'Alene, Idaho and go to a gyn/onc surgeon in Spokane, Wa. She did surgery on me and said it was the worst case of adhesions she has ever dealt with in all of her years of operating. Unfortunately I ended up back in the hospital because I kept vomiting and was so sick. After my incision leaking liquid stool they realized my bowel had been perforated and they had to do emergency surgery. The bowel exploded when they opened me and the surgeon said it looked like a hand grenade had gone off inside of me. He didn't think he could save me and then said he decided to take another look and saw enough of a bowel to stitch up then had to leave the wound open. He also stated in his surgery report it was the worst case of adhesions he had ever seen. I repeat this only to tell you that by my first surgeon being so aggressive, I believe that is what made the difference. I was on a wound vacuum for weeks and in the hospital a total of six and a half weeks. It has taken me a full year to come back from that. I have been doing well as far as adhesions and obstructions this last year. In twelve years I have had 8 major "gut" surgeries and they tell me it might happen again. If I have to have surgery again I will go back to my surgeon in Southern California. He is known to be one of the best ovarian cancer surgeons in the US.

Unfortunately September 7th my husband was diagnosed with Stage III Esophageal cancer. We have been dealing with that and just got the news after chemo and radiation with hospitalizations that his petscan shows all cancer has shrunk! I researched and have taken him to OHSU in Portland, Oregon. He will be having surgery to remove his esophagus and have his stomach made into a tubular esophagus/stomach. It will alter his life, but he has a chance at life. I don't understand why we have had to deal with so much cancer, but we are fighters and will get through this. I wish I could go through the surgery for him because I know I could do it and I am not sure he can. He also has heart issues. Please say a prayer for us. We remain positive and hope for the best.

I will pray for all of you that you will also be survivors and have a wonderful Christmas.

God Bless,

Linda

vj1's picture
vj1
Posts: 151
Joined: Jun 2010

Thank you so much for sharing with us. Had can we not have faith and courage to go thru all this after reading your story. I have always believed things happen for a reason and I am sure you have asked that many times and now are questioning again. You are a true inspiration! May you and your husband continue to be in God's blessings. My prayers are with you both.
Verna

Christine B.'s picture
Christine B.
Posts: 137
Joined: Sep 2010

Thank you for sharing your story of courage and faith with us, Linda. I will keep you and your husband in my prayers.
Christine

Lisak
Posts: 59
Joined: Mar 2009

I know you know how helpful and hopeful your post make us because you have felt what we feel everyday. I love to read survivors post it gives us hope and when I feel scared it aways helps to read these.. thank you so much Linda! You & your husband are in my prayers.

God Bless You Both!

Disneynutt's picture
Disneynutt
Posts: 135
Joined: Aug 2009

Thank you. I will keep the faith after that story. It is incredible. My cousin had the exact same surgery your husband is facing and he is going wonderfully now. He feels and looks great and is cancer free.

Good luck to you both and thanks so much for sharing.

clamryn's picture
clamryn
Posts: 508
Joined: Jun 2010

Linda I can't believe what you have been through. You are such an inspiration. Thank you for posting your story. God Bless you and your husband.

Linda

linda1120's picture
linda1120
Posts: 438
Joined: Oct 2010

Thank you all for your kind comments. My husband and I are doing well, he is getting stronger after chemo and radiation. He will have his surgery on January 5th. We are enjoying family and friends during the holidays. Jim's petscan came back with 70%plus shrinkage on his tumor and the lymph nodes. It is so odd for me after ovca with surgery first that his surgery is after. I found him a great teaching cancer center hospital, so we both feel good about that. I will keep you all posted on how it goes. Thank you sincerely for your prayers. I pray you all go into remission and feel good for the holidays.

Merry Christmas,

Linda

azgrandma's picture
azgrandma
Posts: 577
Joined: Feb 2010

i am so glad there are survivors with this horrid disease
God Bless you all

goatiegirl's picture
goatiegirl
Posts: 16
Joined: Dec 2010

12 years? You are an inspiration. I am new to this cancer, and know the trials many are faced with. Do you have a secret tool?

linda1120's picture
linda1120
Posts: 438
Joined: Oct 2010

No secret tool unless my stubbornness counts! Just kidding. I just don't think it was my time. I also had an amazing aggressive surgeon. My story is higher on this list if you want to know more about my story. God Bless, Linda

Live to be 100
Posts: 3
Joined: Dec 2010

THANK YOU for sharing your amazing story. I so needed to see something along these lines to continue giving me strength. I am 17 months disease free after last treatment. But I am wondering how was your CA 125 trend? I would like to share mine if you don't mind, because I need to get it off my chest. 11, 6, 6, 8, 4, 8, 16 and the last one this month was 21!(This is all post-treatment). I am feeling lost and scared. I have had a throat infection and problems w/ sinus in the past three months. You think this had to do something with the spike? I am feeling blessed to have ran into your post, because the drs can tell you one thing, but there is nothing like hearing it from the warrior!

P.S. I am so happy that your husband's tumors are shrinking and will pray for them to be gone for good!!

linda1120's picture
linda1120
Posts: 438
Joined: Oct 2010

thank you for the big smile you put on my face! I need to post more often to bring hope to those going through this dreadful disease. My Ca-125's have never been higher than 10 except when I had ovca. They dropped very fast with the chemo. They range about 8-9. I know that all kinds of things can affect your count, but if it concerns you you need to contact your oncologist and tell him this is not normal for you. I would want a cat or petscan if it were me. My current gyn/onc surgeon doesn't believe in doing counts often because she said they can go up and down and she would rather go by symptoms. My original gyn/onc/surgeon told me to get a count every six months the rest of my life, so that is what I do. I don't want to worry you, but with this disease it is better to be cautious. Do you have any symptoms of ovca?

My husband has his surgery (esophageal is opposite of ovca they do chemo and radiation first) on Wednesday. I pray he will be okay and cancer free!

Linda

VictoriaSF
Posts: 165
Joined: Dec 2010

hello
thanks so much for sharing your story.
i am new to cancer and new to this site. i was dia with ovarian cancer 3c 2 months ago and had surgery, will start chemo next week...
This site is very helpful but also can be depressing, but i guess nothing positive in having cancer. Of course i am doing my best to stay positive and strong and busy...
and hearing from 12 years survivor in such good spirit - very good, ray of sunshine!
thank you

pattysoo's picture
pattysoo
Posts: 173
Joined: Oct 2010

That was an inspiring post. Like others who responded I am very grateful to read about your experiences. It's my happy thought for the day. I do so hope things come out well for your husband. You two should have many more years together to enjoy yourselves.

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

If I am still here in 11 years, I promise to post and encourage all the teal sisters that come after me. It is so kind and thoughtful of you to do so.

Carlene

linda1120's picture
linda1120
Posts: 438
Joined: Oct 2010

I wanted to follow on this thread so you will all know that Jim is cancer free after his surgery. All of the nodes and tissue came back negative! We are on cloud nine to say the least. He is very weak and unfortunately developed pneumonia about two weeks after surgery. It is two months out and he is still very weak. Esophageal cancer is a tough one like ovarian is. Unfortunately it is aggressive, but we are going to plan on him living many more years. My odds were definitely not in my favor to say the least, and I'm still here! TWELVE YRS, 3 MONTHS! There are Stage IIIC long term survivors out there.

Keep the faith, and thank you for all of the prayers regarding my husband Jim.

Linda

kikz's picture
kikz
Posts: 1267
Joined: Jun 2010

and your family. Your story gives us all hope.

Karen

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