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REALLY NEEDING INFO..PLEASE!

wannaknow
Posts: 12
Joined: Apr 2010

I have uterine papillary serous carcinoma..still need uterus and cervix removed..onco could only take ovaries, tubes, a lymph node..all cancerous. He had told my family if he has to guess its stage 4. I wonder if he doesnt know because he couldnt take uterus and cervix out yet? He wants me to have 3 rounds of carbo/taxol then scan to see if tumor has shrunk in uterus/cervix so he can safely remove them..then 3 more treatments of carbo/taxol. Ive had one treatment and due for my 2nd one in 5 days. I get a treatment every 3weeks. Im terrified...he has never said anything to me about survival rates for this..and i didnt ask..now after reading some of these post/comments im totally terrified. Im 46 with an 11 year old to raise! and from what im reading i will be lucky to live for 2 more years!?? NO WAY! that CANT BE! HELP ME LADIES...PLEASE GIVE ME SOME GOOD NEWS ON THIS!
Kim

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

Iam not sure how long we live with this cancer. I don't think anyone really does. That is because in the last few years they have discovered more about it and how to treat it. If it recurs there are a multitude of chemo treatments to help you. Many women can live for years on and off chemo. I had a recurrance and am on doxil and avastin and have had two treatments and am having a good response. I find this chemo very easy to take as compared to carbo/taxol. I saw my list on my molecular assay of chemo's they can use and there are many. It is not easy to live on and off chemo but women with ovarian cancer do it all the time. I find they have a specialness about them. I Hope I am developing that special humaness or change in my life that is making me a better person. I went through alot of anxiety and fear and have reached a calmer place.

I may be getting HIPEC in the future. This is heated chemotherapy into the abdomen. With your extensive cancer I wonder if that would be an option for you someday. Ask you Oncologist if intraperitoneal chemo would be helpful for you. Systemic chemo is also good and has put alot of us into long remissions. Be careful reading on the internet; there are many negative articles and sometimes you have to balance learning about your cancer and being an advocate for yourself and trusting the health professionals you are working with.

I am sorry you have to go through this. Prayers coming your way!

Kethrycat
Posts: 5
Joined: Feb 2010

I suggest if it is at all possible that your doctor get a sample of your tumor and have it sent off for testing to see what chemo drugs are not effective on it. I went through 8 rounds of chemo with no impact on the size of my tumor. We tried at least 2 different combos to no effect. We went ahead with the surjery and they did the testing then and discovered that no currently approved drug would work on my tumor (I am stage 4 also). So I was weakened by all the cheno when I went under the knife, resulting in some serious problems afterwords, not to mention that I almost died on the operating table. I guess this really isn't good news for you. I was on the same cheno treatment as you until the ct scan showed no change in the size of my tumor so we changed to a 3 drug regimin that inckuded adriamiacin and I forget the other 2 drugs.

I don't know what my projected lifespan is. My doctor obviously can't tell me since there is no way of knowing.

I don't know how helpful this all was. My cancer has metastesized all over my body and I get radiation treatments to stop the lumps from growing. We are going to try a drug that is not approved for uterine cancer. This is going out side if the box. Amazingly, my insurance company had agreed to pay for 3 months. The drug is sutent. If it works I will be posting that here, you betcha!

Good luck. I at least do not have children I have to consider though the whole process. I hope someone else is able to post some more positive news for you.

spunkyleela
Posts: 3
Joined: Mar 2010

I can tell by your posting how scared you are. I'm 45, and I had stage III uterine cancer last year that had spread to one ovary and one lymph node. I had surgery, chemo & radiation. I'm in remission now, with testing every three months.
I'm not understanding why they have to shrink the tumor before taking it out. It's neither here nor there, and you do have to trust your doctors. They cut me stem to stern practically and yanked it all.
One thing out of thousands I've learned in this journey is hope + determination are your biggest weapons in this fight! Knowlege ranks right up there, too. And something that has comforted me is that "survival rates" and statistics simply don't apply to individuals. They're used by doctors to kind of put people into groups and to choose the right therapies and so on. Everyone is different, you can't compare yourself to someone with the same cancer, etc. Cancer research has come so far in recent years, it's amazing.
I'm new to this site, so I'm not sure if we're not supposed to recommend books, etc. But in the category of "Knowledge is power," the book called "Life Over Cancer" written by Keith Block, MD, has helped me tremendously. It kind of empowers you to DO something for yourself to fight cancer and keep it away. I recommend it to anyone that listens to me who is dealing with cancer.
I wish you all the luck and good health in the world! Hang in there.
Lisa

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