CancerCompass message board discussion started by Ikenkris on 3/19/2006 http://www.cancercompass.com/message-board/message/all,4853,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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? Ikenkris Sun, 19 Mar 2006 00:00:00 GMT 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 Bullecious Thu, 20 Apr 2006 00:00:00 GMT 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. Ikenkris Wed, 26 Apr 2006 00:00:00 GMT 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) Bullecious Fri, 28 Apr 2006 00:00:00 GMT 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. Meredith Wed, 17 May 2006 00:00:00 GMT 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 Bullecious Mon, 12 Jun 2006 00:00:00 GMT 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 Bullecious Mon, 12 Jun 2006 00:00:00 GMT 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 Sadmom Tue, 27 Jun 2006 00:00:00 GMT 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 Meredith Fri, 30 Jun 2006 00:00:00 GMT 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 Sadmom Mon, 03 Jul 2006 00:00:00 GMT Hi Vicky, So far I am doing well. I have had no signs of cancer for about 8 months now. I was stage 3B--my first symptom was back pain, which may be unusual. Then I started having slight bleeding and discharge. And from there, the nightmare started! Initially, I had 6 rounds of cisplatin and etoposide (5 days a week every 21 days). During the attempted hysterectomy, they found residual tumor on the small intestine, so they closed me back up. Then I had more cisplatin, irinotecan and internal and external radiation. Ever since then, I have been clear according to PET and CT scans. I'm sort of a pessimist by nature, so I anticipate the cancer coming back. All the information I've found says that it almost always does come back, but still I don't let it run my life! For the most part, I live a normal life; the only long term problems I have had are some pelvic pain and neuropathy (nerve damage in legs caused by chemo). If it does return, I'll have to deal with it the best I can. It sounds like your daughter was a very special young woman and you love her very much. I'm sure you made many precious memories together. My mom (who also posts on this message board) had been wonderful and strong for me through this whole thing. I don't know what I'd do without her and the rest of my family. It seems the editors have "erased" your e-mail for privacy/security reasons. But if we can somehow exchange e-mails, I would love to speak with you! Take care, Meredith Meredith Fri, 07 Jul 2006 00:00:00 GMT I was diagnosed in March 2005, so it's been about 16-17 months now. Meredith Fri, 07 Jul 2006 00:00:00 GMT Hi Meredith I am happy to hear that you are doing well. I would love to talk to you further but the site removed my private email address.I do not know how we can contact each other outside of this site. If you have a suggestion PLMK. Take care of yourself hope to talk to you soon. Hugs Vicky Sadmom Wed, 12 Jul 2006 00:00:00 GMT Vicky, Hello. I am Meredith's sister. I have read your messages. I am truely sorry for your loss. I saw that you & Meredith tried to leave your email information, but the website took it out. If you have yahoo, please try to get in touch with Meredith there. Her ID 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 ----. I hope this will help. Kerri Seattlesister Thu, 13 Jul 2006 00:00:00 GMT Hi Kerri Nice to hear from you. Thank you for your kind words I feel so bad that another family has to go through what we did. I have another daughter Heather that is older than Megin was and who knows what it has been like for her possibly the two of you could correspond as well? I would like to communicate with Meredith and you as well if you would like. The site removed the contact information again. I do not know how we can exchange personal email information. The cancer compass site will not allow personal id or email information to be posted on the site it against their policy. Hope to hear from you soon Don't give up. Vicky --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Sadmom Fri, 14 Jul 2006 00:00:00 GMT hi kerri i was just wondering how your sister meredith is doing? i have not heard from either of you and you have been on my mind a lot lately. i have tried on several occasions to leave an email address where you could reach me but the site keeps removing them. i guess we will just have to communicate the best we can.please let me know how things are i do pray that all is well with you & your family. i hope to hear from you soon. you are all in my prayers huggs vicky Sadmom Sun, 30 Jul 2006 00:00:00 GMT Hi. Thanks for your concern. I am doing really well. I have a check-up (no scans though) in a couple of weeks, so we'll see how it goes. But life is continuing as usual! How are you doing? I do wish they wouldn't keep removing the e-mail info, but I guess they have their policies about it. I check these messages from time to time and I'll try to keep you updated as I know things. Again, thanks for your concern. Talk soon. --Meredith Meredith Tue, 08 Aug 2006 00:00:00 GMT Hi there So happy to here from you. I keep trying to leave you a private email address but the site keeps removing it. I am hanging in there doing the best I can. Some days are better than others you know how that is. When are you scheduled for more scans? What are they saying as far as your treatment plan goes? My daughter had HPV & now I see on TV that they say that certain cancers are caused by the HPV virus. How did they diagnose your cancer? I was wondering if that is the link to this form of cancer. If I am being to personal just tell me I will not be offended. I suppose I am grasping at straws trying to find a reason why this is so rare? Right now my husband is in the hospital for the second time in a month so that has added to the stress but I suppose things could be worse sometimes I wonder. You take care of yourself you are in my thoughts & prayers. Talk soon Hugs Vicky Sadmom Wed, 09 Aug 2006 00:00:00 GMT Sorry it's taken me so long to reply. Sorry to hear about your husband. How is he now? I was diagnosed with a biopsy after having back pain and some slight bleeding. I know very much how you feel about wanting to know more about this rare cancer and how your daughter was struck with it. My oncologists told me and my family that this type of cancer is not caused by HPV, but my mother and I have found information linking it to HPV 18. However, most women who have HPV 18 (or any other strain of HPV) and get cancer end up with SQUAMOUS cell cervical cancer, so it still doesn't solve the question why a few of us get the small cell variety. I am often looking for the answers myself while doing research, but as you know, it's so rare that there isn't much information to be found. I'm going to keep looking. Take care, Meredith Meredith Tue, 26 Sep 2006 00:00:00 GMT Vicky, How are you? Meredith goes for her scans tomorrow. I think this is the time that my whole family just holds their breath. We hope and pray for the all clear so that we can breath again. It doesn't get easier. When Meredith is due for a scan I feel like we are all sitting on the side of a cliff. I can't even begin to know how Meredith is feeling. I just know how I feel. I catch myself watching her and wonder how she does it, how she gets thru everyday with this hanging over her head? I read your story again tonight about your daughter. I can't even begin to imagine this world without my sister. I pray and ask the same question why my sister? You might have asked the same question " Why my daughter?" Who knows? I do ask god to let Meredith be the miracle. I can't even begin to tell you what a wonderful person she is. She did not deserve this nobody does. I will let you know how the scans come out. Kerri Seattlesister Sun, 15 Oct 2006 00:00:00 GMT Vicky, Meredith had her scansand she has had a reoccurance in the cervix and 1 lymphnode (not sure about the spelling). When we received the news it was like the world stopped. Meredith is very upset! The doctors are getting together to figure out what will be the next step. I can't tell you what I am feeling right now. I am MAD..that is what I am. Why her? The thought of her going thru another treatment is killing me. I just wanted this to be gone. I wish I had just 1 wish...just one. Kerri Seattlesister Tue, 24 Oct 2006 00:00:00 GMT I just read your message and feel the same way--very angry. My friend has small call cervical cancer, which has recurred. Level IV due to a misdiagnosis as large cell initially. I am going down to see her this weekend. Actually there will be 8 of us all together, college friends. I understand there is little hope. But she is hanging in there. Her voice is very weak; they are not sure why. Hullomel Thu, 09 Nov 2006 00:00:00 GMT Hi there!  Is anyone out there??  I noticed there hasn't been any posts in a long time.  I started this discussion way back when.  I've been following your emails and was wondering about Meredith.  I posted about my sister on several different "small cell" posts throughout the "gyn" and "cervical" cancer message boards.  My sister got diagnosed with SCCC in Feb 06 and fought it with chemo and radiation until Aug 06.  She had clean scans in Oct 06 and just had her 2nd round of scans Jan 07.  They noticed two slightly larger than normal lymph nodes in the pelvic region on the scans and are sending her for a PET scan next monday.  We are terrified.  They said it could just be inflammation?  Anyone else experience this type of scare?  Thanks.  Kristina  Ikenkris Wed, 17 Jan 2007 00:00:00 GMT  On 1/17/2007 Ikenkris wrote:Hi there!  Is anyone out there??  I noticed there hasn't been any posts in a long time.  I started this discussion way back when.  I've been following your emails and was wondering about Meredith.  I posted about my sister on several different "small cell" posts throughout the "gyn" and "cervical" cancer message boards.  My sister got diagnosed with SCCC in Feb 06 and fought it with chemo and radiation until Aug 06.  She had clean scans in Oct 06 and just had her 2nd round of scans Jan 07.  They noticed two slightly larger than normal lymph nodes in the pelvic region on the scans and are sending her for a PET scan next monday.  We are terrified.  They said it could just be inflammation?  Anyone else experience this type of scare?  Thanks.  Kristina My 34 year old sister was diagnosed with small cell neuroendocrine carcinoma on November 10, 2006.  She had 2 rounds of chemo consisting of:  Cisplatin on day 1 and Etopside on days 1-3.  We found out last week through a PET scan that her tumor grew from 4 cm to 10 cm and it has metastized on the side of her face and the cancer is in her lymph nodes. Needless to say, we were devastated.  Today, 1-22-07, she started Topotecan,  which she will have every day for 1 week with 2 weeks off.  Before round 2 they will do another PET scan to see where things are.  The goal is to shrink the tumor enough to do a total hysterectomy. Right now her tumor is too close to her bladder.  Keep me posted on how the PET scan turned out.  Thanks-Amy  Amy g. Mon, 22 Jan 2007 00:00:00 GMT  On 1/22/2007 Amy g. wrote: On 1/17/2007 Ikenkris wrote:Hi there!  Is anyone out there??  I noticed there hasn't been any posts in a long time.  I started this discussion way back when.  I've been following your emails and was wondering about Meredith.  I posted about my sister on several different "small cell" posts throughout the "gyn" and "cervical" cancer message boards.  My sister got diagnosed with SCCC in Feb 06 and fought it with chemo and radiation until Aug 06.  She had clean scans in Oct 06 and just had her 2nd round of scans Jan 07.  They noticed two slightly larger than normal lymph nodes in the pelvic region on the scans and are sending her for a PET scan next monday.  We are terrified.  They said it could just be inflammation?  Anyone else experience this type of scare?  Thanks.  Kristina My 34 year old sister was diagnosed with small cell neuroendocrine carcinoma on November 10, 2006.  She had 2 rounds of chemo consisting of:  Cisplatin on day 1 and Etopside on days 1-3.  We found out last week through a PET scan that her tumor grew from 4 cm to 10 cm and it has metastized on the side of her face and the cancer is in her lymph nodes. Needless to say, we were devastated.  Today, 1-22-07, she started Topotecan,  which she will have every day for 1 week with 2 weeks off.  Before round 2 they will do another PET scan to see where things are.  The goal is to shrink the tumor enough to do a total hysterectomy. Right now her tumor is too close to her bladder.  Keep me posted on how the PET scan turned out.  Thanks-Amy Hi my name is Lisa and I am from the UK I was diagnosed on 31st January 2006. I was told I had stage 1b1 and no evedence of any spread.The tumour wasn't in my lymph or blood. I had 2 rounds of caboplatan and etoposide followed by radical hysterectomy then another 4 doses of chemotherapy followed by 5 weeks of external radiotherapy then 2 internal treatments. My first CT scan on 20th November was completely clear.However I have been given two completely different prognoses by consultants.My surgical oncologist told me it would probably come back and that I should take medical retirement and my clinical oncologist said no way how due you expect to pay for your old age if you don't go back to work, he said that this type of cancer used to have a really bad prognoses but that was no longer the case and now days with the advance in medical treatments the majority of patients survive. I am now seeking a second opinion through my insurance company. I Know there are certain factors associated with a good prognoses with this type of cancer but I am not sure where I fit in with this.So far I have found out that in order to fit the bill the following apply.1.your tumour must be less than 2cm at hysterectomy  2.It must not be in your blood or lymph3 You must be a non smoker4 You must not have any other serious illness such as HIV or chrons5 You must not be an alchoholic or drug addict6 your tumour must be within surgical margins( I am not entirely sure what this means, I think it means that the tumour must not be at the edge of your cervix as it is more likely to have spread to other organs.7 You need to be treated with either cisplatin or caboplatin and etoposide as opposed to other chemo.(not sure if this is now the case as based on report written in the 1990,s which gave a 70% survival compared with 35% for other chemo regimes but ther are probably newer treatments out there now.I do know that people survive this type of cancer as I read a report based in Scotland that followed 15 patients each of them for 10 years at the end of this period there were 7 survivors one of which was diagnosed in her 80's and is now in her 90's. What I haven't managed to work out, is if you fit the bill on all these prognoses factors is if there is a 100% survival rate.In my case I do not know about my surgical margins, I do not know if the surgeon based his prognoses on this or if the clinical oncologist has looked at all these factors and that is why he seems so positive that is why I have asked for a second opnion. The other thing to bear in mind is that even people given a poor prognoses survive my doctor said one of her patients was given 2 weeks to live over 10 years ago and that consultants get it wrong all the time. Granger Tue, 23 Jan 2007 00:00:00 GMT My sister had a recurrence.  It is now in the chain of lymph nodes on the internal and common iliac region of the right pelvis.  They are now going to try carboplatin and taxol.  She only had about a 5 mo. remission.   Lisa from the UK.....Where can I obtain the study you talk of in Scotland.  I would be very interested in reading this.  If you can post the website that would be great.  We are scared and desparate.  Thanks, Kristina Ikenkris Fri, 26 Jan 2007 00:00:00 GMT I am truely sorry for your sisters reoccurance. Meredith has had a reoccurance it involves 3 lymphnodes, and a small hot spot of about 2cm. She started the new radition Cyber Knife here in Seattle. It is not suppose to cause as much damage as regular radiation. Meredith is not sure if she will be taking chemo again. Meredith does lots of research on this and new treatments if there is anything new she will post it. If she is not able I will do it for her. I wish you and your sister all the best. Seattlesister Sun, 28 Jan 2007 00:00:00 GMT Lisa,   I to would like to read this report in Scotland. If you have the information that would be great. We look for anything and everything on small cell cancer and new treatment. Meredith (my sister) reads a lot about it. We all know the % on survival with this cancer....it does depend a lot on stage and lymph involvement,  but I will never give up on her no matter what the % is. My sister is a stage IIIb. She was in remission for 10 months and it is now back. I still have hope. I can't even think any other way....I can't. I hope your treatment goes well and the margin thing you were asking about is clean margins at time of surgery. This is where the doctor can get clean cuts no cancer. If you have any other questions or would just like to talk, just let me know.  Kerri Seattlesister Mon, 29 Jan 2007 00:00:00 GMT  On 1/29/2007 Seattlesister wrote:Lisa,   I to would like to read this report in Scotland. If you have the information that would be great. We look for anything and everything on small cell cancer and new treatment. Meredith (my sister) reads a lot about it. We all know the % on survival with this cancer....it does depend a lot on stage and lymph involvement,  but I will never give up on her no matter what the % is. My sister is a stage IIIb. She was in remission for 10 months and it is now back. I still have hope. I can't even think any other way....I can't. I hope your treatment goes well and the margin thing you were asking about is clean margins at time of surgery. This is where the doctor can get clean cuts no cancer. If you have any other questions or would just like to talk, just let me know.  KerriHi I am sorry do not know where I found it, also lost information on prognoses factors, I am usually searching the web at about 2 in the morning when come across something useful and can never find it the next day. The trouble is it usually brings up tons of information on lung cancer so you end up with 7 million pages or if you type in commas you get nothing. I have found information on pubmed before and National Cancer Insitute has a report untitled. I live in Bristol and the woman that set up the Bristol cancer help center had breast cancer that came back six times before she died and she lived for twenty years fighting it .If I can find the info again will let you know. I was thinking if we all logged our details on some sort of spreadsheet other people comming to this site would have the information at hand. I know I wanted to find out as much info as possible when first diagnosed and still hunting.  This is what I would like to have seen from other people. perhaps it can be our legacy to others. Friends or relatives could fill it in too. NAME   DATE DIAGNOSED   AGE AT DIAGNOSES Lisa       31/ 1/06                    43   STAGE AT DIAGNOSES1b1 TREATMENT RECEIVEDchemotherapy Carboplatain and Etoposide, radical hysterechtomy including removal of ovariesradiotherapy 5 weeks external 2 internal. TUMOUR SIZE AT SURGERY 10mm by 14mm LYMPH NODES INVOLVED  NO 2 YEAR SURVIVAL  ?  5 YEAR SURVIVAL  ?     Granger Mon, 29 Jan 2007 00:00:00 GMT I am a 35 year old woman from Norway. I was first diagnosed with neurodnocrine small celled cancer i january 05. At that time I had a small tumor on my cervix, this was removed by operation along whith my uterus and surrounding lymfhnods. To be sure of that I was going to get well I also went throug severeal chemotreatments. Because of allergy, as well as low bloodvalues I had to change treatment several times and ended up with carboplaten and Gemecitabin. After this the doctors said that my chances of getting cancer again was just as big as for anyone else.... Last november I discovered a large tumor in my stomach, this turned out to be a 10 cm large tumor spreaded to my lymphs. After this I have had a scan and it turns out to be "only" this tumor. Now I am back on the same chemo as last time, the doctors will not remove the tumor because they mean it is  "already in my system" and they give me chemo to shrink it and hopefully stagnate it for some time. They are not able to give me any prognoses of how long I have got to live.I have two small children ( 4 and 6) and this is a rather hopeless situation.  I will do anything to see my children grow up!Is there anyone who have had any experience with this kind of developement? I have tried to search for help in other countries to see how they are treating this, but it is almost impossible for me as a privateperson to get hold of the people who knows anything. Is there anyone that has been able to fight this back for a shorter or longer period, and if there is -how were you treated?I am very interested to learn about the Cyber Knife, is there anywhere I can learn more about it?   Norwegian Wed, 14 Feb 2007 00:00:00 GMT Hello NorwegianCyber Knife is a form of radiation therapy.  It is more precise and does less damage to surrounding tissue.  They insert "seeds" into the affected area or tumor and then radiate just that area.  It has only been available in the Seattle area about a year. Oranjestad Sat, 10 Mar 2007 00:00:00 GMT Dear Vicky,       Hello, my name is Matt R.. I'm writing you this letter in response to the letter I read on this website.       This is the first email letter I have written to anyone about the situation that my family is going through, so if I sound a little unsure of my words it's only because I am.         I'm very sorry to hear about the passing of your daughter. She sounded very brave in the face of such challenges and I can only hope for the best for her son and the rest of your family.      My wife, Kathleen(24), was diagnosed with small cell cerival cancer about nine months ago and we are still fighting for her life. This is a fight we know we will win.       If you would like to write me back I would love to speak with you, if only to share experiences. Again, this is the first email I have written so I don't know if I have to include my address. If I do, here it is: --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- . If my lack of knowledge about the internet thing brings a smile to your face, then the fourteen hours it took me to type this was worth it.         Best Wishes, Kathleen and Matt R.  kathleens husband Thu, 06 Sep 2007 00:00:00 GMT Try this.  I googled small cell cervical cancer and found this.  Good luck.http://www.cancercompass.com/message-board/message/all,4853, SydsMom Sat, 15 Sep 2007 00:00:00 GMT I was looking for information on small cell cervical cancer and was glad to find this board, seems like there is not a lot of info out there about it.  My grandmother was diagnosed with Stage IV small cell cervical cancer.  So far it has spread to her liver, stomach and lymph nodes.  Do you guys know of anyone that has been successfully treated for this type of cancer?  From what I have been reading, the prognosis is not good.  BSSMU42 Mon, 22 Oct 2007 00:00:00 GMT Hi,I hope you grandmother is doing ok. When I first was diagnosed with small celled cervix with matastases, I was told that no one was surviving this illness. I was also told that I propably had a year to live my self, this was january 07, and I am still going strong... I have also found some articles about other survivers, and are holding on to this. I don`t have this article any more, but one of the survivers was a corean, I believe, who had metases and survived after chemo, operation and radiation. I was at the hospital last week, having an MRI, wich was clean, no metastases! But I will have to remove a cyst, that might contain suspect cells... I don`t know what this means, but hope that it is not my cancer. My hope is that someone will come up with a treatment for this illness, soon!Is there someone out there who knows about anything coming up?Give my regards to your Grandmother. Norwegian   Norwegian Wed, 16 Apr 2008 00:00:00 GMT What stage were you? I am so glad to hear you are doing so well!!!! I am Meredith's sister. You can see some of her post on here. We lost her on Nov. 24th 2007. I can not tell you how it breaks my heart for her not to be here, but I know she would be so happy for you! Take care-Kerri Seattlesister Tue, 22 Apr 2008 00:00:00 GMT I am so sorry to hear about your sister Meredith! I have read her story on this page and was hoping for some better news!Thank you for your answer. I feel lucky so far! When the matastases was discovered jan. 07, the doctor told me that I was beyond stages... I believe that they had given up on me at that time, and I don`t believe that they had expected me to get this well. Unfortunatly they know this illness better than me, but I hope I will show them...These days I am still waiting for a date for my operation, and I still don`t know if this is my cancer that is back. I hope not! Thank you for caring!Mona  Norwegian Wed, 23 Apr 2008 00:00:00 GMT We're all rooting for you Mona.  I do hope you've got some good news for us all.  I've heard anecdotally that there are more success stories out there but that many cancer patients who beat it want to put the dreadful experience behind them.  As a result they don't always continue to post.  Personally, I like the thought of them all out there getting back on with their lives... I just hope that happens in my family.Best of luck,x Poppethead Mon, 28 Apr 2008 00:00:00 GMT Hi, I am here and cancer free.  I was diagnosed with Small Cell Cervial in August 2006.  Stage 3b.  I was 10 months from my last pap which had been clear. I didn't have HPV. The info I could find had all the women having hysterectomies with very little survival rate.  I didn't have one.  I had 9 rounds of chemo(whatever I could handle) and during the course I also did 40 days of external radiation and then 4 treatments of internal radiation. It took 8 months.  I just zapped it the best I could!They told me my prognosis was bleak.  If I could get rid of the tumor completely the first time around my chances would be better of survivng 6 to 18 months.  I just went for my last PET CT in april of 2008 and I am still cancer free; now 13 months.  No signs.  None in my lungs, liver or brain.  I have to say that my doctors are much more optimistic since it has been more than a year and the small cell has not returned anywhere else in the body.  I hope this message finds all the women battling this rare form of CC, healthy and well.  I read through this message board and I want everyone to know that just because they say you may not be able to beat this, they are wrong.  They told me my chances were "slim to none".  I never ever believed them.  I still don't, even if it returns.  I'll beat it.  So can you.  I want to put this behind me as well and the way I did that was to write a book.  It was published on the same day as my one year PET CT.  You have no expiration date.  That's between you and God.  He put these scientists here for us.  Use them wisely. Collemarle Wed, 07 May 2008 00:00:00 GMT Three day ago my daughter was diagnosed with SCC. She is going in for a hysterectomy in a couple days. We haven't received the results for the staging yet, but are hoping for the best from what I've read. She's 21 and a very strong kid. Any recommendations for research while going through this tornado? She'll be coming to California and receiving treatment at UCLA and we're hoping this is our best option. Can anyone recommend anything? new patient Sat, 24 May 2008 00:00:00 GMT  On 5/24/2008 new patient wrote:Three day ago my daughter was diagnosed with SCC. She is going in for a hysterectomy in a couple days. We haven't received the results for the staging yet, but are hoping for the best from what I've read. She's 21 and a very strong kid. Any recommendations for research while going through this tornado? She'll be coming to California and receiving treatment at UCLA and we're hoping this is our best option. Can anyone recommend anything? The best advice I can give you is to ask questions and go with your gut.  Small cell of the cervix is very rare. It happens in less than 1% of of cervical cancer cases. It usually originates in the liver, lung, and brain.......not the cervix.  All the research that I did when I was diagnosed convinced me that having surgery (a hysterectomy) before I started treatment was not a good idea.  Small cell  responds extremely well to chemo therapy coupled with radiation.  The question I asked was "if this were in my liver , lung, or brain, would we be operating or going straight into treatment?"   The answer was "they would not operate". So why would I let them give me a hysterectomy before treatment? I was in treatment within 8 days of diagnosis.  I am not making any suggestions as to what to do. Talk to your health care providers.  Not  a lot is known about the treatment or prognosis of this SCC.  Dig and ask and then go with what your heart is saying.  Have her eat well.  Have her get plenty of rest, and have her laugh her rear-end off at least once a day.     I have been completely cancer free for more than a year.  I spent 8 months in treatment.   The fact that I am cancer free at all is huge.  Take care and I would love to hear how your daughter is doing.  My thoughts are with you both. Collemarle Sat, 24 May 2008 00:00:00 GMT I am new to this site and was diagnosed with cervical cancer in June. I went for a radical hysterectomy in July /08 and the pathology showed small cell cervical cancer stage 1. The diagnosis of small cell has been a huge blow to me and somewhat scares me. I am scheduled to see the radiologist next week. I was informed that I will begin chemo soon as well. I would love to hear from others who are going thru the same situation as me. Lola_f32 Sun, 24 Aug 2008 00:00:00 GMT Lola,   Welcome to this board. I got me through so many questions I had about small cell. If you have read all the messages, you would see lots from my sister Meredith. She had small cell. We lost her last Nov., but she was a stage IIIb when they found it.Please let me know if you have any questions or just want to chat. I am happy to help. Meredith always got on and help anyone she could.  Kerri Seattlesister Tue, 09 Sep 2008 00:00:00 GMT Hi, wow I actually found someone/something on the internet that knows about this rare cancer.   It took 2 1/2 months to diagnosis but my mom was diagnosed with this the first week of June.  This has been such a scary road, with an uncertain one as I never can find much on this.   Anything I did find was from years back, which showed poor prognois but now that I am reading these posts, it appears that things are looking up with their studies and treatments.   Everyone out there that posted, please know your stories and feelings touched me to the core.   My mom was diagnosed at stage 3 (early part of it) and her cervix was the size of a mans fist, she had the bleeding and painful aches in her full abdomen area.  She was treated 3 times with chemo (Cisplatin and VP-16), 3days in a row and every 21 days.  Her PET/CT scan showed her cervix shrunk significantly as well as the line of cancer moving towards the pelvic bone which was great news, however, she has signs of it on her lymph nodes which scares me, but it did shows just a little less from this chemo but nothing to jump up and down about.  The big concern is there were a few new spots showing up on her lower spine...ugh    The Tumor Board met here at karmanos and decided they would try chemo again....Carbopaltian and Paclitaxel for 2 to 3 possibly 3 treatments every 21 days again but only for 1 day.  She goes in on Tues for the first one.   It is so unfortuante that others have and will endure this scary part of life, but it is nice knowing there are others out there who can share their info with you and positive stories.  I love to here the success stories!   Thank you everyone that has posted, as reading your stories have touched me.  chele Fri, 12 Sep 2008 00:00:00 GMT Hi,I am new to this board.  A dear friend of mine was just diagnosed with small cell neuroendocrine carcinoma of the cervix.  The doctors found a 2 cm tumor of poorly differentiated small cell neuroendocrine carcinoma in her cervix, and the cancer has already metastasized in at least four lymph nodes (the cervix and lymph nodes were just removed).  She just had a PET scan to see if it’s spread anywhere else.   I've read through all of the posts on this topic, and they were very informative, but the prognosis does not look very positive.  I am very grateful to you all for sharing your stories and experiences.My friend is not consciously aware of how serious her condition is, and her husband is, understandably, trying to protect her and give her some sense of normalcy.  She got the diagnosis from a gynecological OBGYN, but she has not seen an expert in the field, so I'm trying to gather information about experts in this particular kind of cancer.  I would think that since this type of cancer is not related to the typical cervical cancer, it would be more appropriate to be treated by a neuroendocrine cancer specialist, but I've been calling different research hospitals, and they all have referred my back to the OBGYN oncologists.  Does anyone have any thoughts about whether she should see a neuroendocrine oncologist vs. an OBGYN oncologist?  And does anyone have any recommendations for doctors and/or research hospitals?  I’m having a difficult time finding an expert in the field -- It doesn't matter where in the world they are located.  I will call MD Anderson it, but is closed for a couple more days due to the hurricane.Also, I am interested in learning about alternative therapies.  I read about Ambrotose and did some research, and the results seemed mixed.  I also read about a clinic in Scottsdale specializing in alternative methods of treating cancer which sounds interesting. Any other recommendations?And if there are any success stories out there, I'd love to hear from you as well.  Right now, I'm just trying to gather all of this information, and get my friend to the preeminent expert in the field so that they can confirm her diagnosis and let her know what her options are so she can make an informed choice about her course of treatment.  There seems to be a tension between quality of life vs. aggressive treatment.  It would be nice to be able to deal with both, but at the very least, I think it’s in her best interest to have a realistic sense of what to expect.  Thanks for all of your help. My thoughts are all with you as you personally battle this cancer or are supporting people who are.Meredith Laroo Mon, 15 Sep 2008 00:00:00 GMT Meredith,   I read your story and I am so sorry your friend is having to go through this.  I lost my sister, her name was Meredith last Nov. with this cancer. You might have read some of her messages on here. Meredith was being treated by a Gyno Oncologist at first. She went into remission for 10 months. When it came back and it almost always does when you are as far along as she was when they find it, her gyno onco  said she need to see another oncologist that had some experience with small cell. There are very few doctors out there that have dealt with this cancer (when it is in the cervix). There are not very many studies because it is so rare. So Meredith was treated at Swedish Cancer Institute, it is a great cancer hospital. Her onco corresponded with doctors at MD Anderson, Sloan-Kettlering (sp) and Fred Hutch here in Seattle. My mother did so much research on this cancer, new treatments and new chemos. They actually used one my mother found on Meredith's 4th round. Please let me know if you have any questions about this cancer that I can help with. I know it is very hard. Kerri   Seattlesister Wed, 17 Sep 2008 00:00:00 GMT Hi Meredith My mum was diagnosed with small cell cervical cancer in March 2008. She has had 5 rounds of chemo - carboplatin and etoposide. She's supposed to have another round but just isn't up to it at the moment. We live in the UK and she's being treated at our local cancer hospital. She is being treated by the lung cancer team not the Obs and Gynae specialists because small cell cancers are more commonly found in the lungs. You could try speaking to a specialist in lung cancer about your friend. I'm very grateful to everyone who has posted messages here. My mum's diagnosis came just 4 weeks before I was due to give birth to my first baby and it is so sad that she just hasn't been able to enjoy her beautiful granddaughter in the way she would have liked. I'm sure that my daughter reminds her of the fact that she probably won't be around to see her grow up. My mum's cancer had already invaded her bladder and metastasized to her lymph nodes on diagnosis. They have since discovered bone mets on her spine. She has declined any information on her prognosis and will not allow us to ask her doctors either. My own research has revealed the gravity of her condition. The chemo has been successful in shrinking the tumour and lymph glands but my mum has a very poor quality of life due to the fact that she has been in bed since March. She is deeply depressed and we are at a loss as to how to help her with this. She is terrified of how this illness will progress. If anyone can offer any suggestions on how we can help her please do let me know. Jules IndieKid Thu, 02 Oct 2008 00:00:00 GMT I never thought I would ever find myself writing on a message board, let alone one about cancer.  My name is Danielle and I am 29 years old.  I had my son in April of this year.  Towards the end of my pregnancy, my OB found a polyp on my cervix.  She removed it the day I delivered the baby and I found out 8 days after Dylan's birth that it was indeed cancer.  They call it a "limited small cell neuroendocrine endocarcinoma."  In a nutshell, lung-cancer in/on my cervix.  Since I just had a baby, my oncologist opted to start me on chemotherapy first.  I had cisplatin and VP-16 given to me for 3 days in a row, followed with a 2 week break. This lasted through 4 cycles (12 treatments total) and ended with my having to have a hysterectomy, which was done in August 2008.  I actually go tomorrow to get the results of my CT scan I had yesterday on my chest, abdomen and pelivs, as well as an ultrasound that I had on my kidneys.  Apparently one of the chemo drugs (can't remember which one) really does a number on your kidneys.  ANYWAYS, it's a shame that if you want to know "what your chances are" all the data is collected from those patients who have had this type of cancer actually in the lung.  My oncologist told me a 20% survival rate.  Well, my cancer wasn't in the lung now was it?  I refuse to believe that this cancer is going to take me away from my husband and now almost 7-month old son.  There needs to be more research on what can be done to treat and rid this type of cell from occuring anywhere...let alone the cervix...I guess we are all a rare breed....If I could, I would hug all of ya'll going through this...I have a wonderful support system but spend so much time feeling totally alone.  I am constantly reminded of this stupid cancer everytime I pull my wig off at the end of the day or look at my scars from my surgery.  Thank GOD for my son, he really is my saving grace.  I never wanted to know what stage my cancer was, but appartently they "caught it early".  I hope that I will get to the point where I can look at all this and think "wow, did that really happen to me?"  Some days are good, others just suck!  But, when I hold my son, all thoughts of cancer go right out the window. Dylans Mama Tue, 11 Nov 2008 00:00:00 GMT Hallo everyone!I am really sorry to see so many new writerts, because this is an illness no-one should get!I am still going strong after my last surgery in May. I am being treated at the Norwegian cancer - hospital, by gyn.doctors. I am not very happy about that, because I believe they have to little experience with this kind of cervix cancer. I read that your sister Meredith had been in Sweden, do you remember the name of her doctor or hospital?I have also been in contact with gyn.doc in Sweden, at Sahlgrenska. It seems like they are doing a lot of the same treatment as I have been through (and the most of you too), what was new compared to Norway was their way of discovering metastases at a earlier stage. They use some kind of nuclear-injections combined with a scanning called "scrintiolog", Shortly the nuclearcells attaches to the cancer.cells and become visible on the scanning. This they use to remove the cancercells by surgery before it has developed an lump. I anyone else have heard of this method, I really want to hear about it, because my doctors haven't heard of it... At this hospital in Sweden the gyn.doctors cooperate with those who usually work with stomach and intestine, because they are more experienced with these cells. (Sorry if i write something wrong - english is not my daily language...)I still take one day at the time. My next check upis in three weeks, and this time I am actually optimistic. I feel very good!I will check up some more around this scanning-method and come back to you all.Mona  Norwegian Tue, 25 Nov 2008 00:00:00 GMT