3 Clear CT Scans during chemo, 2 months later they found small leasions in lower pelvic, but CA 125

Angela_BRCA1

This is so hard, just when my hair was growing back, my CA 125 went from almost 6,000 down to 26. I had two clear CT scans, no evidence of disease, but now, just 8 weeks after I completed chemo, CT scan two weeks ago shows small leasions in lower pelvic area. I don't understand how the disease could be growing back and my CA125 is still trending down. Has this ever happened to anyone? Still waiting for PET scan for further information and confirmation. Waiting is excurciating! I am 38, 3c, BRCA1, mother of 3. I was told that BRCA1 patients are less likely to have a reocurrence and here I am 8 weeks later with a posssible reocurrence! Will it ever stop!?

kayandok

Dear Angela,
welcome to the board. I am so sorry that you had to come and find us. I am also the mom of three kids, and am a 3 1/2 year survivor. I find that the hardest thing for me is when I let myself become consumed with fear for my kids.

Don't panic, that won't help you or your kids. You have come this far and you will find that you will be able to muster up the fight to keep going. There are some amazing women here who are going through this same battle. Feel free to come and check in anytime. Keep us posted on PEt results.

Hugs,
kathleen

nancy591

waiting
Waiting for the other shoe to drop becomes part of our lives and our new normal. At least for me. Wait for the scan results. When I had my recurrence my ca125 was trending upward but WELL within normal range and actually took a dip down. My post inital treatment ca125 was 7 then I went to a 10 then 12 then dropped to a 10 when I had a confirmed recurrence. I'm not telling you this to scare you just letting you know that everyone is different.

BRCA positive women DO respond better. Hopefully you will find out your results soon and can celebrate. If it happens to be bad news get ready to put your boxing gloves back on and fight for your life. Please let us know what happens.

Also wanted to add...I know how hard it was to join this board. I didn't join until 1yr after my diagnosis. I remember not wanting to hear any bad stories. The stories would scare me. You do get used to it. You truly get to know and care for all the women on the board. We share both triumphs and defeats.

Angela_BRCA1

nancy591 said:

waiting
Waiting for the other shoe to drop becomes part of our lives and our new normal. At least for me. Wait for the scan results. When I had my recurrence my ca125 was trending upward but WELL within normal range and actually took a dip down. My post inital treatment ca125 was 7 then I went to a 10 then 12 then dropped to a 10 when I had a confirmed recurrence. I'm not telling you this to scare you just letting you know that everyone is different.

BRCA positive women DO respond better. Hopefully you will find out your results soon and can celebrate. If it happens to be bad news get ready to put your boxing gloves back on and fight for your life. Please let us know what happens.

Also wanted to add...I know how hard it was to join this board. I didn't join until 1yr after my diagnosis. I remember not wanting to hear any bad stories. The stories would scare me. You do get used to it. You truly get to know and care for all the women on the board. We share both triumphs and defeats.

Update - Pet Scan was yellow indicating the cancer has returned
Thank you Kathleen and Nancy for the encouragement. Nancy, you are so right. Joining this board has been very difficult for me. I have been so appreciative of my mom who has been on this board since my initial diagnosis (Angelasmom2).

The Pet scan came back indicating cancer. I just flew back from consulting with my Dr. at MD Anderson last Thursday. She reveiwed the CT scans, pet scan, and my CA125 (which has been stable over the last three months) 34, 26, 33. (It started out at almost 6,000) She said the the information seems inconclusive to her. She said that less than 10% of her patients have had a reoccurence in less than 6 months (let alone weeks) after completing the chemo regimen that I just finished Dec. 22, 2010. She ordered a biopsy when we returned to CA and we are still waiting for my appt., it should be by next week. Her honest opinion was pretty harsh. Either it is not cancer and just inflamation, or it is cancer and surgery or chemo will not help me if it is this aggressive. On top of that I learned last Thursday that the colonoscopy that I requested was not good news. They initially found one polyp and felt that its apperance was not concerning but of course removed it. The pathology show that it was the 4th type of polp which is very dangerous and very concerning. It is not consider benign or malignant, but in between. Very discouraging. I thought that even though I was BRCA1 positive, at least I was only having to fight one cancer. I was basically months away from having colon cancer! If the biopsy comes back positive my Dr. at MD Anderson said that my best option is to get into a PARP clinical trial. My Dr. her in CA has sent my pathology to a new program called Target Now to see if there is a chemo that my cells respond well to. With this new information we will move forward with a strategy to get me into the best trial based on the results of the Target Now.

I am very scared, actually terrified! I know that I am in God's hands. I know my ending, I am just scared for my future, my husband, my children, and my family. I am so blessed to be so loved. I know that our God see's our lives through different eyes. We are in an imperfect world and I know that it makes Him sad. I don't always understand His ways, but I know that He is the same God that I praised for my beautiful life before cancer. I am praying for a miracle if that is His will, if not I am praying for the strength to bring glory to Him through my journey for my family (especially my beautiful children). God, grant me and my amazing husband (19 years and counting) the peace and strength to accept the outcome of the biopsy and my battle.

You are all amazing women! You are encouraging and brave. Thank you for taking time to care about me. I will post an update as soon as I have the results.

LaundryQueen

Angela_BRCA1 said:

Update - Pet Scan was yellow indicating the cancer has returned
Thank you Kathleen and Nancy for the encouragement. Nancy, you are so right. Joining this board has been very difficult for me. I have been so appreciative of my mom who has been on this board since my initial diagnosis (Angelasmom2).

The Pet scan came back indicating cancer. I just flew back from consulting with my Dr. at MD Anderson last Thursday. She reveiwed the CT scans, pet scan, and my CA125 (which has been stable over the last three months) 34, 26, 33. (It started out at almost 6,000) She said the the information seems inconclusive to her. She said that less than 10% of her patients have had a reoccurence in less than 6 months (let alone weeks) after completing the chemo regimen that I just finished Dec. 22, 2010. She ordered a biopsy when we returned to CA and we are still waiting for my appt., it should be by next week. Her honest opinion was pretty harsh. Either it is not cancer and just inflamation, or it is cancer and surgery or chemo will not help me if it is this aggressive. On top of that I learned last Thursday that the colonoscopy that I requested was not good news. They initially found one polyp and felt that its apperance was not concerning but of course removed it. The pathology show that it was the 4th type of polp which is very dangerous and very concerning. It is not consider benign or malignant, but in between. Very discouraging. I thought that even though I was BRCA1 positive, at least I was only having to fight one cancer. I was basically months away from having colon cancer! If the biopsy comes back positive my Dr. at MD Anderson said that my best option is to get into a PARP clinical trial. My Dr. her in CA has sent my pathology to a new program called Target Now to see if there is a chemo that my cells respond well to. With this new information we will move forward with a strategy to get me into the best trial based on the results of the Target Now.

I am very scared, actually terrified! I know that I am in God's hands. I know my ending, I am just scared for my future, my husband, my children, and my family. I am so blessed to be so loved. I know that our God see's our lives through different eyes. We are in an imperfect world and I know that it makes Him sad. I don't always understand His ways, but I know that He is the same God that I praised for my beautiful life before cancer. I am praying for a miracle if that is His will, if not I am praying for the strength to bring glory to Him through my journey for my family (especially my beautiful children). God, grant me and my amazing husband (19 years and counting) the peace and strength to accept the outcome of the biopsy and my battle.

You are all amazing women! You are encouraging and brave. Thank you for taking time to care about me. I will post an update as soon as I have the results.

CA-125 not reliable
Angela

Even though the CA-125 seems to be a useful marker for OVCA and its recurrance, it cannot always be trusted. There are other markers out there that relate to OVCA (HE4 and epithelial cellular adhesion molecule--EpCAM) but they haven't become mainstream (yet). I imagine in the future, there will be several blood tests done--not just the CA-125--to monitor disease progression/regression.

It sounds like you have another borderline cancer to deal with now. And are being told that "nothing can be done" if the OVCA is back. No wonder you are scared!

If I were you and your biopsy is positive, I would find an oncologist doing "metronomic" therapy to consult with. With metronomic therapy, the chemo is given in small doses daily and even though it doesn't kill the tumor directly, it works against the blood supply feeding the tumor. This has been effective even with disease that was deemed to be drug resistant. There is still hope for you.

In addition, there is scientific research that supports lifestyle changes that have been shown to make a difference in improving survival outcomes. You have a good support system (that is one of the factors that increase survival).

Watch this video and see if you still feel powerless: http://www.youtube.com/watch?v=XaDt3AJQ98c

Best wishes to you. I hope the biopsy is negative.

mopar

Angela_BRCA1 said:

Update - Pet Scan was yellow indicating the cancer has returned
Thank you Kathleen and Nancy for the encouragement. Nancy, you are so right. Joining this board has been very difficult for me. I have been so appreciative of my mom who has been on this board since my initial diagnosis (Angelasmom2).

The Pet scan came back indicating cancer. I just flew back from consulting with my Dr. at MD Anderson last Thursday. She reveiwed the CT scans, pet scan, and my CA125 (which has been stable over the last three months) 34, 26, 33. (It started out at almost 6,000) She said the the information seems inconclusive to her. She said that less than 10% of her patients have had a reoccurence in less than 6 months (let alone weeks) after completing the chemo regimen that I just finished Dec. 22, 2010. She ordered a biopsy when we returned to CA and we are still waiting for my appt., it should be by next week. Her honest opinion was pretty harsh. Either it is not cancer and just inflamation, or it is cancer and surgery or chemo will not help me if it is this aggressive. On top of that I learned last Thursday that the colonoscopy that I requested was not good news. They initially found one polyp and felt that its apperance was not concerning but of course removed it. The pathology show that it was the 4th type of polp which is very dangerous and very concerning. It is not consider benign or malignant, but in between. Very discouraging. I thought that even though I was BRCA1 positive, at least I was only having to fight one cancer. I was basically months away from having colon cancer! If the biopsy comes back positive my Dr. at MD Anderson said that my best option is to get into a PARP clinical trial. My Dr. her in CA has sent my pathology to a new program called Target Now to see if there is a chemo that my cells respond well to. With this new information we will move forward with a strategy to get me into the best trial based on the results of the Target Now.

I am very scared, actually terrified! I know that I am in God's hands. I know my ending, I am just scared for my future, my husband, my children, and my family. I am so blessed to be so loved. I know that our God see's our lives through different eyes. We are in an imperfect world and I know that it makes Him sad. I don't always understand His ways, but I know that He is the same God that I praised for my beautiful life before cancer. I am praying for a miracle if that is His will, if not I am praying for the strength to bring glory to Him through my journey for my family (especially my beautiful children). God, grant me and my amazing husband (19 years and counting) the peace and strength to accept the outcome of the biopsy and my battle.

You are all amazing women! You are encouraging and brave. Thank you for taking time to care about me. I will post an update as soon as I have the results.

DEAR ANGELA
I'm sorry you are going through so much. It seems so unreal. But how blessed I was to read your lovely words of how the Lord is paramount in your life! Truly, He and my family are the reasons I was able to survive OVCA not once, but twice. And you're right - praising and thanking Him in good times is wonderful, but in the 'bad times' He is no less worthy of our thanks and praise. It is in those times we are reminded of His Strength, His Love, AND His will for us. How wonderful that your precious, sweet children and husband are being blessed by your faithfulness and joy and strength through Him!

You can be sure that you've been in our hearts and prayers (my husband and I), and we will continue to pray for healing as well. This is not an easy journey, but certainly more manageable when we know He is in control.

Sending lots of luv and hugs,
Monika