Small Cell Cervical Cancer

Hi. I noticed Small Cell is not a category under the GYN Cancers. I wanted to start a discussion on this type of cancer. My sister was just diagnosed. Any long term survivors out there?

Hi,Kristina. Did your sister catch this early? It is so important, as we are all told so often. If she did, she has excellent chances for recovery! Even with late discovery, I am still doing great after 5 years this Oct, and I DO plan on seeing it...I have had two recurrences, but just keep going back for more treatment. Hope is the key word, along with faith, of course. These scientists are coming up with so many GOOD things to use against cancer....Best of luck to you and your sister. How old is she? (I am 58.) Hugs, Donna Poole

Hello Donna. They said it is between 1B and 2A as far as they can tell. They said she was on the "good" end of a really "bad" cancer. It metastised to the two lymph nodes in the pelvic region. She just finished her second round of cisplatin and etopocide. She expects 4 - 6 treatments total, then radiation and or surgery. It's good to hear of someone else fighting this kind of cancer. I've had so much trouble finding info and/or people with this. It's very scarry, she is only 37 and has a 3 and 5 year old. She has been really sick and weak from the chemo. Please let me know of any of your findings on this disease, support group, etc. Thank you for responding. Take care, Kristina.

Hello again, Kristina...I have good feelings about your sister, because she did see her doctor early..If I would have had the option, I would have told them:"Yes, do the surgery!", but my tumor was embedded into other tissue, so they just shrunk it with radiation..I would have thought that they would still do a hysterectomy after the tumor shrunk, but my doctor at the time said "We won't do that until the cancer comes back in your ovaries or uterus, THEN we'll do surgery." (I thought that was strange..)I often wonder that if they HAD gone ahead and done surgery, if maybe they would have gotten all the cancer, and it might never have metastasized, but that's water under the bridge...My advice would be...Always get a second opinion, and don't wait too long to do it either! I am wishing I would have gone to MDA in Houston, or the Mayo Clinic, or the Cancer Treatment Center, right off the bat....As far as info, just type in Mayo Clinic or MD Anderson Hospital in the browser bar...They will have a TON of info for you (under cervical cancer)..When I checked on CTCOA in Chicago, I found a very helpful lady in chat there, and I usually do not use chats normally..I guess what I am saying is, Get the very best treatment you can, be aggressive with your doctors if you have to,and ask a lot of questions...And, you also might check in to getting that shot for HPV, the virus that usually causes cervical cancer...I believe the FDA approved it for use this year....If nothing else, be sure to get that checkup once a year (pap and pelvic)..It might just save your life.I give this site permission to print my email addy. It is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- ..Hugs, "Momma Hen" (Donna)

I also have/had small cell cervical cancer, stage 3B. I was 26 when it was found in March of 2005. I had cisplatin and etoposide, 6 rounds, 5 straight days, every 3 weeks. When I went in for the hysterectomy, they found residual tumor on the small intestine. Then I had more chemo--cisplatin and irontecan once a week for 4 weeks, but they had to stop because the neuopathy got so bad. I also had roughly 6 weeks of external radiation and 2 internal radiation treatments( I was scheduled for 4 of those, but it was stopped because they could find no evidence of tumor on the cervix).

In January, I had PET and CT scans and they were good. No evidence of cancer. Even from the beginning, they didn't find any evidence that it had spread to my lymph nodes. The tumor on my small intestine was not from metasatis, but from the primary tumor (it was that big!). I have more scans next month, so we'll see how it goes.

I know my prognosis is not good at all, but I plan on fighting it all the way. I've had this now for at least 15 months and I'm still here.

I hope for the best for your sister. It's a tough journey, and for me has been filled with a lot of sadness and anger, but happy times too. Your sister will be sick from treatment, but it DOES pass. It feels like it will last forever, but it doesn't.

Hi, Kristina...I was diagnosed in Oct 2001 with small cell cervical cancer...'Had radiation, radiation implants, and chemo for about 40 treatments, I think...As time moved on, it matastasized to my lungs and liver, and was in my abdomen from the start, as well as some lymph nodes...I have been on different chemoes and on May 12th I has a grand mal seizure (while I was driving my truck!)I actually drove myself to our local ER, then was life flighted to a hospital, where I am getting more radiation and chemo for two brain tumors in the front right side of my brain (muscle control area, so driving is now out for awhile)...I have two more radiation treatments today and tomorrow, then an MRI for my brain and a CTScan for the rest of it...It is hard to believe I am even sick, because I feel real good! I am very lucky to have my appetite going full speed too...That helps... Keep the faith and a good sense of humor...Learn all you can...Have your sister drink lots of water and try to exercise...(Cancer does not like either exercise or a dehydrated body....)I eat lots of veggies, fruit, and nuts and grains, as well as lots of fish, chicken, and yes, steak....The more I can eat, the better for my RBC and bone marrow counts...I am 58 years old, and was always bad about not getting check-ups...Now I harp to any woman that will listen to get that taken care of...I will let you know my prognosis as soon as I get the results...Best wishes for you and your sister..I also have (three) sisters and a brother, and my mom for moral support...This is wonderful, having a great family and friends there for you....Hugs, Donna

I must have missed this awhile back when my computer was down, and just happened to see you in the site again...I am glad I'm back on track and can go to this message board...I will hopefully be able to keep up better now...Hugs, Donna

Hi Donna
I have read your message and see that you have been dealing with small cell cervical cancer for some time now. Was yours just called small cell cervical cancer or did it go by another name?

I am curious because I recently lost my 29 year old daughter to something similar. It was called small cell neuroendocrine carcinoma of the cervix that started with a tumor in her cervix. At first they thought she had first stage cervical cancer which was bad enough but things got worse as we soon found out.
My daughter was diagnosed a month after she was married. Her and her fiancee had lived together and had a little boy before they were married. In May of 2003 they were married in July of 2003 she was diagnosed.
They set her up for a radical hysterectomy which of course meant that she could no longer have any more of her own children. This was heart breaking but they could have children other ways as long as she was ok. Well they went in to do the hysterectomy and found something that was more than they expected. It had already metastisized to her lymph nodes and it was this rare form of cancer. They closed her up did not perform the surgery and gave us the options none of which sounded hopeful.
They told me that my youngest daughter had six months if she did nothing possibly 1-2 years with treatment, chemo and or radiation. I was devastated to think that my baby girl was on borrowed time. I started to do research and tried to find something or someone that knew anything about this type of cancer. There was nothing we looked everywhere called everyone but there was no information. Even the doctors told us there was very little about this type of cancer. She decided to fight and went for the treatments she had numerous cycles of cisplatnum & eptopiside to start with several times a week. She also had external & internal radiation treatments which eventually destroyed her bowel tract & she had to have a colostomy in July 2004. After that she had more chemo of all different varities & combinations. She had to endure many blood transfusions & several admissions until they told her on 12/19/04 that her options were over & sent her home to be with her family which was to be her last Xmas.
We are from New Jersey and my daughter had her treatments at Cooper Hospital in Camden NJ & also Fox Chase in Philadelphia,Pa. Even though she was being taken care by some of the finest doctors in oncology it made no difference her chances were slim if at all.

My daughter kept a smile on her face knowing the whole time in her heart that it was going to claim her & take her away from the family that she loved. She would never admit it but you knew that she was aware that she would not see her son grow up. He was 3 when she left him. To watch her suffer and go through that was the hardest thing I have had to endure knowing that there was nothing I could do but just be there.
After a little over 1 1/2 years it claimed her on the 31st. of Jan 2005. They gave her 1-2 years & she was gone in less than two years.
I see now that there are other people that unfortunately have experienced a similar form of cancer.

Thank god it is finally being talked about which in turn is helping others not feel so isolated as we were. No one knew anything there was no special area to get information. When I would read about cervical cancer it would give you the prognosis,treatment etc, which gave me some hope. Then at the end of the information it stated if the type of cancer was small cell neuorenodcrine none of the above information applied. Hope was smashed we had nothing once more. Hopefully now with communication more will be found out about small cell cancer of the cervix & less woman will have to leave their loved ones behind.

My prayers are with all of you that have or have had this terrible disease touch you or any of your loved ones personally.
My daughter never gave up even with her last breath she fought. Make every day count,make every day special for yourselves and the ones you love.
My baby girl is gone and my heart is broken.If just one woman is saved because this form of cancer is finally being talked about & recognized that will give me hope that no other mother will be left with only her memories.
Keep Smiling!
Vicky

So sorry about your daughter. That is very hard to read, as I also have small cell(neuroendocine) cancer of the cervix and I am 27. Currently, all of my scans show no evidence of disease. This type of cancer seems to frequently strike young women--and I'd like to know why.

This type of cancer does need more recognition, particularly since women who are diagnosed often have nowhere to turn for information. Hopefully, even with these messages, women with this cancer can find others experiencing it.

Again, sorry for your loss. Your daughter was taken from you too soon...

Meredith

Dear Meredith
Thank you for taking the time to respond to my entry It breaks my heart to hear that you too have been stricken with this rare form of cancer. I hope what I had to say in my entry did not cause you more anxiety than what you are already going through. I wrote it in the hopes that I could reach out somehow & possibly help someone else. During the entire time my daughter was going through her treatments I never once found another person that had the same kind of cancer that I could talk too. I do not understand why this is happening to young women like you and my daughter.I am happy to hear that your scans are clear so far.

How are you doing? How much treatment have you had & if you don't mind me asking when were you diagnosed? How did you know that there was something wrong what were your symptoms?

I would think that there should be more information out there about this form of cancer since apparently it does happen to others. You would think that the medical research should be focused on the rare forms so that they too could be helped. If they can research breast cancer & ovarian cancer then why not small cell neuroendocrine carcinoma? I wish I knew how to draw attention so that it could be known to more people. If more people were made aware of this form of cancer then funding could go towards research. Families would have a place to reference to help them & their loved ones instead of being left in the dark like we were & you are.

I will keep you & your family in my prayers. Stay positive and never give up that was the philosophy of my daughter Megin. Live everyday to it's fullest & dont' let the cancer run your life.
Take care of yourself & if you would like to talk further just contact me. If I can help with any information that possibly you do not know I would be happy to discuss things. If you have a private email address that you would rather use please send it to --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----
Have a peaceful day
Vicky