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My history
In answers to some of my previous posts, some ladies asked questions about what I have gone through. I know many are new here since I posted on a regular basis. So here is a summary of my history so far:
I went to my primary care physician on Feb 1, 2006 with complaints of frequency of urination and lower pelvic pain that I believed to be bladder spasms. Due to my family history, he ordered a CT scan that showed a growth (approx 2 1/4 inches) on my left ovary. (family hx included 2 sisters with breast ca, one of which also had cervical ca, and a brother with colorectal ca that recurred as peritoneal ca, he died 6/05). My PCP sent me to a gyn who did a pap test and CA 125. The pap was normal, the CA125 was 457. She referred me to a gyn/onc. He repeated the CA125 the day before surgery, it was 699. He performed a TAH/BSO on March 9, 2006. I was staged as IIc, grade 3, the ca had spread from my left ovary across the outside of my uterus and into my right fallopian tube. CA cells were also present in the small amt of ascites removed. Upon full pathology of the organs, they found endometriosis, fibroids, polyps, and hyperplasic changes on the cervix. The tumor on my left ovary at the time of surgery was approx 5 inches. Due to the aggressiveness of the ca, I had my first chemo with carbo/taxol 5 days after surgery. I completed 6 rounds of chemo finishing July 7, 2006. My CA125 had steadily come down and was 9.8 in August. In Sept, it went up to 14.3 and another CT scan was run due to some pelvic discomfort. The CT scan was clear and the discomfort attributed to adhesions...
I went to my primary care physician on Feb 1, 2006 with complaints of frequency of urination and lower pelvic pain that I believed to be bladder spasms. Due to my family history, he ordered a CT scan that showed a growth (approx 2 1/4 inches) on my left ovary. (family hx included 2 sisters with breast ca, one of which also had cervical ca, and a brother with colorectal ca that recurred as peritoneal ca, he died 6/05). My PCP sent me to a gyn who did a pap test and CA 125. The pap was normal, the CA125 was 457. She referred me to a gyn/onc. He repeated the CA125 the day before surgery, it was 699. He performed a TAH/BSO on March 9, 2006. I was staged as IIc, grade 3, the ca had spread from my left ovary across the outside of my uterus and into my right fallopian tube. CA cells were also present in the small amt of ascites removed. Upon full pathology of the organs, they found endometriosis, fibroids, polyps, and hyperplasic changes on the cervix. The tumor on my left ovary at the time of surgery was approx 5 inches. Due to the aggressiveness of the ca, I had my first chemo with carbo/taxol 5 days after surgery. I completed 6 rounds of chemo finishing July 7, 2006. My CA125 had steadily come down and was 9.8 in August. In Sept, it went up to 14.3 and another CT scan was run due to some pelvic discomfort. The CT scan was clear and the discomfort attributed to adhesions...
I did not contact the American Cancer Society. They deal with research and distributing information. I contacted the Cancer Treatment Centers of America. They actually treat the patient with chemo, surgery, radiation, nutrition, psychology, spirituality, the whole works. If your mother is interested in talking to them, their number is 800-641-0333 or go to cancercenter.com.
Hi Sue,
Do you have lymph node involvement too? Do you have any pain? I have pain on both sides of my pelvis, worse on the right, and 2 lymph nodes involved.
Hi dalip,
I have good family support. My DP is going with me and I have wonderful support from her family too.
We have many friends that have placed me on prayer lists. I literally have over 10,000 people praying for me. The good Lord is going to get so sick of hearing my name, He will cure me just to get all of these people of off His back!!
Friends and family within 3 hours of where I am going for treatment have opened their homes to us so that I will not have to travel back and forth during treatment from Texas to Illinois. My DP's son is staying in our home to take care of the house and pets, so I am free to stay in IL as long as needed. My job has been wonderful about supporting me, too. They have given me absolutely no problems about the time I have missed. No pressure to come back before I am ready. When I told my boss that the cancer had come back, he hugged me and cried. All of my coworkers are praying for me, too. With all of this love and support, how can I fail to beat this?
A dear friend told me that this is the devil fighting me. I told her that he is picking on the wrong person, I won't give up!!!
Rebel Spirit aka Susan
Do you have lymph node involvement too? Do you have any pain? I have pain on both sides of my pelvis, worse on the right, and 2 lymph nodes involved.
Hi dalip,
I have good family support. My DP is going with me and I have wonderful support from her family too.
We have many friends that have placed me on prayer lists. I literally have over 10,000 people praying for me. The good Lord is going to get so sick of hearing my name, He will cure me just to get all of these people of off His back!!
Friends and family within 3 hours of where I am going for treatment have opened their homes to us so that I will not have to travel back and forth during treatment from Texas to Illinois. My DP's son is staying in our home to take care of the house and pets, so I am free to stay in IL as long as needed. My job has been wonderful about supporting me, too. They have given me absolutely no problems about the time I have missed. No pressure to come back before I am ready. When I told my boss that the cancer had come back, he hugged me and cried. All of my coworkers are praying for me, too. With all of this love and support, how can I fail to beat this?
A dear friend told me that this is the devil fighting me. I told her that he is picking on the wrong person, I won't give up!!!
Rebel Spirit aka Susan
Thanks for your generosity to this forum.
I know I have said this before, but I look forward to your posts and will keep you in my thoughts and prayers as you fight this disease.
I was 47 when I had my surgery. The difficulty is not knowing what is going to happen, as so many have stated before. My feeling about you is that your name says it all...the rebel in you will beat this thing..then just think!..in a few years we'll have to change your name to "Rebel 53!"
Sincerely,
Mary
I know I have said this before, but I look forward to your posts and will keep you in my thoughts and prayers as you fight this disease.
I was 47 when I had my surgery. The difficulty is not knowing what is going to happen, as so many have stated before. My feeling about you is that your name says it all...the rebel in you will beat this thing..then just think!..in a few years we'll have to change your name to "Rebel 53!"
Sincerely,
Mary
I too did not know your background so i want to thank you as well for that post.Good luck for wed?.Do you have plenty of support from family ect?.Dawn
Good Luck!!!! give us all the news you can gather about the Cancer Centers of America. Alwauys good to have a back up plan. Crossing my fingers that daughter does not reoccur, but it does happen. I am "only" 76 hun and I got a lot of living to do too. Enjoy that Limo ride.
Hi Rebel,I'm the same age as you,46.I was diagnosed the year before you,Feb,2005 had the carbo/taxol like you,finished that in the August and my cancer was back by the November,so I recurred after just three months.I was then given Caelyx(Doxil)took that from the January to June of this year,that didn't work,my tumor stayed the same,but I felt okay,so had a break from chemo until October when my new scan showed the tumor had grown and I had two new masses-all inoperable.I started chemo again last month Gemcitabine/Treosulfan-why I'm telling you this is don't give up,don't listen to that silly onc,go to the cancer centre and they will show you a whole list of drugs you can still try,its not the end, its the beginning of a tread mill of drugs until a wonderful cure comes along and we can grow old and grey together.Wicked.
Love Sue x
Love Sue x
I'm glad you got into the Cancer Center of America. I understand it's one of the best and you will get top notch treatment. I'm glad you shared your story. I knew you were dx with Ovca, but I didn't know your background. Again, thank you for sharing and my thoughts and prayers are with you and yours.
Big hugs from Texas,
Shawn
Big hugs from Texas,
Shawn
Amen Susan. The devil will never win against the tremendous forces of love and light. May God keep sending you those "earth" angels. Tis the season when they are even more apparent. You are in my prayers. Thanks for glorifying the Lord with your awesome faith and positive spirit.
Hi Susan,
Yes thats where my pains are,both sides,they seem worse at night.I've also got back ache at the moment because my ascites are building up again.I see my Oncologist Thursday,so hopefully I can go in and get them drained again.I've got no lymph node involvement as far as I know,Just a 10cm mass on my right side and two 4cm masses on my left lower and left upper quadrant.Although I figure my lymph nodes must be involved otherwise the fluid would just drain away,but I'm no Doc,so who knows.I eat everything organic,love walking.I've got the loveliest husband on the planet and a 17yr old and a 13yr old, and live in sunny England.Diabetic since I was 17,and so I absolutely adore chocolate!!!!
Love Sue x
Yes thats where my pains are,both sides,they seem worse at night.I've also got back ache at the moment because my ascites are building up again.I see my Oncologist Thursday,so hopefully I can go in and get them drained again.I've got no lymph node involvement as far as I know,Just a 10cm mass on my right side and two 4cm masses on my left lower and left upper quadrant.Although I figure my lymph nodes must be involved otherwise the fluid would just drain away,but I'm no Doc,so who knows.I eat everything organic,love walking.I've got the loveliest husband on the planet and a 17yr old and a 13yr old, and live in sunny England.Diabetic since I was 17,and so I absolutely adore chocolate!!!!
Love Sue x
First, thank you for recapping your history. Though I follow the posts on a regular basis, I sometimes get a little confused with who is who and what their background is.
I, too, recurred after 4 years (Stage 1C). This disease knows no boundaries, plays no favorites and discriminates against no one. But I am fighting, also, and I don't intend to hang it up. I have a wonderful husband, three adoring children and 6 grandchildren......too much NOT to fight for.
I agree with the others; your name says it all. And the "rebel" in your spirit will prevail. I had the opportunity to speak with a former patient of the Cancer Treatment Center of America (on a fluke while I was at a meeting.) Her own doctors had given her no hope - that was 7 years ago! She is alive, kicking and going strong. There is no reason not to believe that this cannot be your outcome. Remember, though the disease is our common bond, we are all individual cases. I admire your fighting attitude. Don't even think about giving up or giving in. This is the season of "miracles", and there is one waiting at the Center that has your name on it. We are all with you, we hold you in our hearts and in our prayers, while God holds you in His hands. God speed, and please keep us posted on your progress. Give 'em hell! Judie :)
I, too, recurred after 4 years (Stage 1C). This disease knows no boundaries, plays no favorites and discriminates against no one. But I am fighting, also, and I don't intend to hang it up. I have a wonderful husband, three adoring children and 6 grandchildren......too much NOT to fight for.
I agree with the others; your name says it all. And the "rebel" in your spirit will prevail. I had the opportunity to speak with a former patient of the Cancer Treatment Center of America (on a fluke while I was at a meeting.) Her own doctors had given her no hope - that was 7 years ago! She is alive, kicking and going strong. There is no reason not to believe that this cannot be your outcome. Remember, though the disease is our common bond, we are all individual cases. I admire your fighting attitude. Don't even think about giving up or giving in. This is the season of "miracles", and there is one waiting at the Center that has your name on it. We are all with you, we hold you in our hearts and in our prayers, while God holds you in His hands. God speed, and please keep us posted on your progress. Give 'em hell! Judie :)
this is for rebel spirit or anyone else thats contacted the american cancer society.I read your story and i would really appriciate it if you would get back with me about the american cancer society if they are going to be able to help you or not and what other tratments are availble besides the chemo my mother is 63 and shes the world to me she has recently been diagnosed with peritoneal cancer shes had 2 treatments and said its the awfullest thing to ever have to go through she still has to have a full histerectomy in january after her 3rd treatment she just feels so awful all the time if this doesnt work for her i would like to have a backup plan like the american cancer society so please let me know how it goes with you im so worried about her.I just wish i could do more to help her.I welcome any information available.
continued....
In October, the CA125 was repeated and was 48.3. My oncologist decided to repeat the test in 2 weeks. It was thought inflammation from the adhesions might have influenced the test. By the time I was to repeat the test, I was in severe pain in my right lower quadrant. My onc decided to check me into the hospital for testing. They ran another CT scan and the CA125. My CA125 came back at 211, the CT scan showed a tumor in the left lower quadrant and 2 lymph nodes involved. My onc stated that it is inoperable and that he could not cure it. He wanted to start me on gemzar/carboplatin to extend my life and otherwise give up on me.
Well, cysters, I am only 46 years old and still have a lot of living to do!! Since I recurred 4 months out of chemo, that tells me that this ca is platinum resistant. So it makes no sense to give me carboplatin again!!
I contacted the Cancer Treatment Centers of America and they have approved my insurance and accepted me for evaluation. I have my first appt with them Dec 6th. I will keep you all posted on what they offer me.
In October, the CA125 was repeated and was 48.3. My oncologist decided to repeat the test in 2 weeks. It was thought inflammation from the adhesions might have influenced the test. By the time I was to repeat the test, I was in severe pain in my right lower quadrant. My onc decided to check me into the hospital for testing. They ran another CT scan and the CA125. My CA125 came back at 211, the CT scan showed a tumor in the left lower quadrant and 2 lymph nodes involved. My onc stated that it is inoperable and that he could not cure it. He wanted to start me on gemzar/carboplatin to extend my life and otherwise give up on me.
Well, cysters, I am only 46 years old and still have a lot of living to do!! Since I recurred 4 months out of chemo, that tells me that this ca is platinum resistant. So it makes no sense to give me carboplatin again!!
I contacted the Cancer Treatment Centers of America and they have approved my insurance and accepted me for evaluation. I have my first appt with them Dec 6th. I will keep you all posted on what they offer me.
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