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Ovarian Cancer back after 12 years

Munawar
Posts: 2
Joined: Sep 2011

Hi, I am Munawar Sultana.
I went through a hysterectomy 12 years back after Ovarian cancer diagnosis. I recieved 4 cycles of chemo as it was stage 1C. Now after 12 years my CA 125 is 169.77. My Onc wants me to get other opinions before she starts the treatment and she is also suggesting a major surgery, as cancer cells are found in all the soft tissues in my body. Then there is a tumor in the female genital tract. Have no ovaries, uterus and tubes, so where can this tumor be. I am trying to be as positive as possible, but occasional bursting out in tears. Has any one experienced anything like this and what are the survival chances? I am 60 now.

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

I'm sorry we had to meet under these circumstances. First let me say that in the 12 years that you were in remission, many new advances have been made. You'll find that many of the women here are dealing with recurrances, including me. Your ONCs approach seems very reasonable. Of course you're having a hard time and that is something that we can help you with. The women who are posting on this site are my heroes and they share information, support and compassion that you can only get from women who are going through what you are experiencing. You are not alone and we'll be there to help every step of the way.
(((HUGS))) Maria

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Dear Munawar

The good news is that you were able to keep cancer away for a LONG time! The bad news is that you are scared...so I think your first task is to deal with the fear as best you can. Read some of the recent postings by Linda Procopio who is LIVING WELL with ovarian cancer and enjoying her life. She has gained a lot of wisdom along her journey as an ovarian cancer survivor and has been willing to share it with us.

There is a VERY GOOD possibility that you will be back in remission again. When a long time has passed since the first diagnosis of ovarian cancer, the cancer very often responds to the same chemo drugs that were given for the first line of treatment. And, as Maria says, new treatments have come on the horizon.

I don't know what is planned for you, but I would not be surprised if the oncologist chooses to treat you with chemo FIRST before discussing the possibility of surgery. If you even do end up needing surgery after chemo.

There is a lot that you can do for yourself to improve your chances of living a long & healthy life. I highly recommend the book Anti-cancer: A New Way of Life by David Servan-Schreiber, MD, PhD.

Best wishes,

Carolen

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

Hi Munawar, I am so sorry to hear of the return of the beast. YOU have come to the right place. I was so glad when I found it. They will all help you with questions, cry with you, dance with you and just be there when you want to throw something.

I too was diagnosed 1c in 1991 and went cancer free for 17 years. Shoot I finally got to the point that I didn't even think about it anymore and thought I beat it. But in 2008, it came back. They did surgery on me but could not get it all because it was wrapped around three main arteries. They got half of it. I did chemo in 2008 (taxol/carbo - 6 treatments) and after completion I got a PET/Scan. They found no evidence of disease...whoo hooo. I got to live 2009 in remission. 2010 it reared its very ugly head again and I did another round of chemo. This time...Doxil. This chemo got 3 spots and killed the stupid stuff but one spot only had minimal shrinkage. Next up...Avastin. (needless to say it didn't work). Now I am back on the hard stuff Taxol.

Munawar, I am 63. In my opinion I don't think they will use the same chemo on you that was used years ago. Some of those chemos they do not use anymore. They have learned a lot more since then. I kinda of think it is funny now that when I change chemos, I know what they doctor will put me on. I learned that from all these ladies. And believe me, they have lots to try. They just have to try to find the right one that works for you.

Munawar you can do this. We are all here for you.

So glad you came to this board.
(((((HUGS)))))

Linda

carolyn45's picture
carolyn45
Posts: 100
Joined: Apr 2011

I well remember my surgeon/gyn/onc telling me that if I stayed in remission for 5 years I would be considered a "new" cancer patient. You've had 12 years! That's fantastic. As others have said, new regimens of chemo are now available that were only dreamed of 12 years ago. You have every reason to hope (even believe) that you will respond to treatment this time as well as you did before. Take a deep breath and dive in to your next round of healing. I'll be keeping you in my prayers.

antcat
Posts: 272
Joined: Jan 2011

Welcome to this board. I am so sorry to hear that your cancer returned. But as others have written, there are alot of chemotherapies out there. Mine came back 14 months after I was operated on and I was so upset because my medical oncologist told me after my 1st completion of chemotherapy, "you are 100% cured". So, needless to say, when it came back my family and I couldn't understand it especially when the oncologist kept assuring us "it was gone". I've been getting recurrences now for the last few years and it never gets easy but this group does help. Maybe since you haven't been on alot of chemotherapy, you could look into a clinical trial. And, most importantly, make sure you have a doctors that will work as a team, for example, gyn/onc, med onc and your primary care because even though some medical oncologists feel a primary care doc is not important and not necessary to be part of the team, is something I disagree with. Anyway, please don't give up and be hopeful.

kikz's picture
kikz
Posts: 1275
Joined: Jun 2010

have to go through this again but agree about new treatments. Here's hoping you get another 12-year remission. The ladies on this board are an invaluable suport team. Welcome and know you are among friends.

Karen

Munawar
Posts: 2
Joined: Sep 2011

My dear dear: Maria, Carolyne, Carolen, Linda and Karen.

I am really overwhelmed with your responses. You all are so caring and loving and have helped me forget the anxiety that I was going through. I have taken three opinions from Canadian Hospital, where my sister is a doctor, one from King Fahad Hospital in Riyadh where my nephew works, and one locally from Imran Khan's Shaukat Khanum Memorial Hospital. Having read the advise of all of you and and having met the ONC at a local hospital, I feel much reveled. There seem to be a consensus that I should be treated with chemotherapy. I am sure it is less painful than a horrible surgery. 12 years back chemotherapy was different, and I wonder how it will be now, a day care and drug administered in a drip?Do share what drug do they give for Ovarian Cancer cells, which seem to have spread out quite a bit in my body.
Your group is marvelous brave ladies and I will sure get the energy from you. Keep me in your prayers, and I will do the same. Lots of hugs. Munawar

Radioactive34's picture
Radioactive34
Posts: 387
Joined: May 2011

We will be praying for you. Hugsssss...the ladies here are great and wonderful.

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Dear Munawar

Glad to hear you are coming to terms with this as best you can. Before long, YOU will be helping another person on the discussion board. We always like to know how you are doing and we learn from each other. Having social support has been proven to increase your chances of survival from any kind of cancer.

Regarding your choice of chemo, of course, your oncologist will make the best choice for you. Like someone already said, you will probably be treated like someone with a new ovarian cancer--since so much time has passed since your first cancer.

Without doing a biopsy, there is no way of knowing whether or not this truly is a cancer recurrence from your original ovaraian cancer--or the appearance of a NEW peritoneal cancer (cancer in the peritoneal lining). I can't remember if you had an actual biopsy or not. The epithelial tissue that covers the ovaries ALSO covers the entire contents of the abdomen and pelvis--so malignant cells can and will spread all over the abdominal-pelvic cavity by getting into the peritoneal lining. There are some people (men and women) whose cancer starts in the peritoneal lining. Ultimately, the two conditions are treated with the same chemo.

There is a procedure for washing out the abdominal-pelvic cavity with chemo or even using heated chemo (HIPEC)--but this would be done after surgery (with your incision open at the time--and later tubes put in to instill the chemo into your belly) and I don't know if it is even being discussed for your case. Just want to include a mention of that as some women have had that done--not me.

If you can avoid surgery--wonderful. But if you are told to go for surgery (to remove the peritoneal lining, omentum & lymph nodes), just prepare for that as best you can. So many of us here have been through it and you will get through it, too. Having said that, I would be very reluctant to go for surgery on the vaginal lesion FIRST--you may be able to eliminate that area of cancer with chemo alone. I had a HUGE tumor (like a big lemon) on my vagina and one doctor said that I would have to have my vagina amputated--I said, "let's see what chemo can do first." And that tumor is now gone.

In any case, the first-line chemo choices usually involve a combination approach. Almost everyone gets a platinum-based drug (cisplatin or carboplatin) AND either taxol or it's synthetic cousin, taxotere. Taxol/taxotere makes your hair (sometimes eyelashes & eyebrows, too) fall out--so if you hear that you are going to get that chemo, you might want to go get a wig as the hair is gone in 2-3 weeks. The hair returns a couple of months after you finish the chemo.

There are also different ways to administer the taxol--sometimes it is given every 3 weeks along with the platinum drug and sometimes, it is given weekly. Some of the women here were offered a THIRD drug called Avastin--that one is not actually a chemo.

Avastin is considered "targeted therapy" which means it is given to target a special mechanism on the cancer cell. Avastin works for some people but not for everyone by stopping the cancer from creating new blood vessels to feed itself. When Avasatin works, it's great. I personally like the idea of going after as many different ways of stopping cancer as you possibly can but your oncologist will know what's best for you.

If you have the option to take your chemo as in in-patient (in the hospital), I would consider doing chemo after 5 o'clock in the evening in the hospital. There was some research that indicated that the side effects were less severe from the platinum drugs when they were given at the end of the day. In the US, the outpatient chemo infusion units want you in early so everyone can go home by 5 pm.

The reasoning for the beneft of the later platinum chemo treatment is that chemo damages the rapidly-dividing cells healthy cells (in the mouth, intestinal lining, etc.) along with the cancer cells--those rapidly dividing cells slow down in the evening and are less affected by the chemo--basically, less nausea & vomiting.

I took my treatments BOTH early and late in the day--I felt that the later treatments were a little easily to handle in terms of nausea and general "yukkiness" feeling that goes on for several days after chemo day. The medications given BEFORE the chemo were really helpful anyway.

By the way, where do you live?

Best wishes to you,

Carolen

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