Small Cell Neuroendocrine Carcinoma.

On the 31st of October I was diagnosed with cervical cancer... 7 days later I already had an appointment with a Gyn-onc and he made me aware that it was a pretty serious type of cervical cancer known as small cell neuroendocrine carcinoma. Stage 1b1 (or less maybe).. Im wondering if anyone else on this site is dealing with this particular type and what you have been told or heard about it, or read or whatever.... I googled it and I shouldnt have because then I became deeeeppply depressed.! I am only 29, I have 4 boys under age 9... I am not ready to be take from them at all...

I had a radical hysto on Nov. 10th and I am just now finally starting to feel like myself after that... I start 18 weeks of 3 days every 21 days chemo treatments on Dec. 10th! The chemo is a precautionary measure as far as I understand it. When the doc looked over the actual cancer and my cervix after the surgery he said it wasnt really a very large spot of "tumor" and it hadnt grown much into my cervix at all... Also they took my lypmphnodes and those were all clear, as well as all the other scans and tests Ive had done...

I feel rather reassured, but then the things I have read about this type of cancer linger in my mind and I just cant help but think negative...

If anyone knows about this type, I would really appreciate anything you have to tell me about it, or info you have.. Its scary.

Thanks in advance!

By ktelleria
Posted December 7, 2008 at 10:11 am
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In December of 2000 I was also diagnosed with small cell (1b2). I too read all the info on the internet regarding small cell. Don't let statistics get the best of you. Talk with your dr. I know mine is very possitive! We will grow old together!!

Well, 8 years later I'm here to tell you we can beat the odds!

I did have lymph node involvement and had ovaries and lymph node removal in Jan 01. I began chemo and radiation (external then internal radiation). The extream radiation was due to the spread to lymph nodes. Hope you won't have to undergo that. I do have residule complications due to radiation. Although chemo did make me ill and loose my hair when it was over it was over. No real residule effects.

Please feel free to email me if you want. Wishing you the best of luck and good health! Enjoy the holidays and try to keep a positive outlook. I know it is difficult at times but I believe it helps with the healing and treatments!!

Take care of yourself!
Kimberly

By Lukesmommy
Posted December 7, 2008 at 2:24 pm
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I know exactly how you're feeling. I sometimes wish I never would have started research, but I needed to know what I was dealing with for myself and my family.

I was diagnosed in May 2008. June 5th radical hysterectomy. Done some radiation and chemo, and am now undergoing more chemo treatments. I am confident in my dr's that I will be fine. My tumor wasn't very big either so I believe they caught it in time. My radiation and chemo treatments are precautionary I think as well. I don't want to take any chances, and I know the odds are good (very good) I'll be thinking about you. Feel free to email me anytime just to chat. This is the 1st time I've encountered anyone with exactly the same diagnosis.

Take Care.

By PJ2
Posted December 9, 2008 at 5:00 pm
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Your clear margins are great news! Congratulations. When I was diganosed 10 years ago and everywhere I looked gave a bleak outlook on what I could expect. While they couldn't really even tell me what stage I was at that time or how they would proceed, I am almost thankful it happened that way. If I had to read all the new info our there, I would have gone crazy or sick with worry.

I actually had the doctor tell me once that while the Internet is a great source for research, it can also be the biggest source of misinformation. My advice would be to remember that each person is different and their diagnosis, while similar, may not have the same outcome.

I hope all goes well during chemo and wish you a speedy recovery. Hang in there and be sure to update us on your progress. It is always good to hear stories like yours, as it gives us hope.

You can always knowck out the negative thoughts and channel it into activism. It worked for me!?

PJ

By shaz
Posted December 10, 2008 at 6:18 pm
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Hello All, I am here in UK and 36 years old, also have small cell cervix cancer, don't know what stage, but, it's spread downwards to my vagina and i have a tumor in my lymph node in my neck. I have so far had 3 cycles of chemo - carboplatin and etoposide - and am due a CT scan on the 18th December. They also want to do a biopsy of my neck lump to find out if it is the same type of cancer, then they will start radio therapy. Any advice anyone???? I feel so alone, like a freak, even the oncologist doesn 't seem to know how to treat me!!! Shaz

By MrsBrown84
Posted December 15, 2008 at 4:41 pm
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I am 24 years old and was diagnosed with small cell neuroendocrine carcinoma at the end of September 2008. I had a tumor on my right ovary the size of a softball. They removed the tumor and the ovary. They think there may be more located in the area, so I just started round one of chemo. It went very well, no nausea! My concern with this is will the chemo make me sterile? I know my cancer is slightly different in that it is ovarian cancer and not cervical. Can anyone shed some light on their experience with chemo, having children afterwards? Thanks!

By Momma24boys
Posted December 19, 2008 at 8:58 am
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Thank u soooo much for replying... It really made my day reading that there is more ppl out there with this same type of situation!! U have given me a great deal of hope!!! I am currently only doing chemo. I will have about 15-18 weeks of it... It hasnt been too bad. takes me a few days afterward to get back to normal, but thankfully I have a lot of support and help. Keep in touch please!!!

By Momma24boys
Posted December 19, 2008 at 9:08 am
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Im sorry to hear this.. I cant say I know what ur going through 100%. I do have the small cell neuroendocrine, but the furthest it got was just a small tumor on my cervix. I had lymphnode dissection and it was all clear. The main thing to remember is that great things can happen through will and prayer, support and possitive thinking.. Feel free to email me to talk, All this Ive been going through has really put a lot in perspective, and it makes me feel good to talk with people in my same situation... Merry Christmas and I hope ur CT results are as good as possible!

By Dreamseeker
Posted December 21, 2008 at 2:15 pm
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I was diagnosed with small cell carcinoma of the vagina in July of 08. I have already gone thru Chemo & External radiation. After treatment Pet scan showed no cancer any where. However, when I had an internal exam small spot was seen ( was there from begining) and biopsy said cancer was still active. They want to do internal brachytherapy or I have the option of a radical hysterectomy. They say the radical hysterectomy will hurt my quality of life. What do they mean? How bad is the surgery? What is the recovery time.
I have read so much negative stuff about this cancer I am really afraid of it spreading and do not know what to do. I am so glad that there are survivors out there.

Please help

By Momma24boys
Posted December 22, 2008 at 12:05 pm
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Dreemseeker..... I dont understand what they mean that ur quality of life would be hurt by a hysterectomy... I also dont understand why they didnt do the hysto in the first place.. I wasnt even given the option, they just said they with the small cell type, there was nothing to consider, it was a hysterectomy and follow up with the chemo as a precautionary measure.

My hysto was on Nov. 10.. Its not even 6 weeks later and I am fine like nothing even happened. I had mine laproscopically, so I only had 6 small insisions, not one large one.. I had some bladder issues, but its all a healing process... If I were u I would have the hysterectomy. I even had my ovaries taken, theres no way I was willing to chance the cancer showing up in my ovaries knowing that with this cancer, it can and will spread if possible...

Please keep me updated with ur decisions.. I too am sooo glad to see there are more women with this same type.. Survivors and fighters!!!

By Dreamseeker
Posted December 23, 2008 at 9:29 pm
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Thank you for you response. They said that they could not do any surgery for me in the begining, Uneducated doctor. I had already had a hysterectomy where only my uterus was taken out months before.

My tumor was over 5 cm so they wanted to act fast so they gave me Radiation & Chemo right away. After completion of treatment the Pet scann came up neg for cancer. But when we found the small spot internally I went to another Gyn Oncologist to see what to do. He said to do the surgery now would be risky because I had radiation. Some how it damages your tissues. They insist that this brachiotherapy, High dose done in the hospital, will kill the little spot that I have left. They said that with the radical hysterectomy I might lose my bladder and have to wear a bag for the rest of my life to drain the urine. My whole vaginal wall would have to be removed, thats where my tumor was. Was your vaginal wall removed as well?
They insist that I have the radiation. They said that there are survivors that have had only Radiation & Chemo for small cell. I am afraid and do not know what to do. I am scheduled to go for the brachiotheray on Jan 5th. Each day goes by and I fear this cancer is spreading.

Are there any other survivors out there that have been treated with Radiation & Chemo only?

By Bluemoon2762
Posted December 24, 2008 at 5:49 am
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I was diagnosed with Cervical Cancer in January 2008. In February we found out it was Small Cell. As it had spread into some of the surrounding tissue, a hysterectomy was not the best option for me, so I immediately started chemo and radiation (both internal and external).

I did 6 rounds of chemo (cistplatin and etopicide), 6 internal radiation treatments and 6 weeks of external radiation.

As of June 2008, my PET scan came back clear and we thought it was over.

My next PET scan was in September 2008. It showed that the cancer came back and that I had spots on my lungs and in my pelvic region. So, I am back on chemo again. Now I am doing Doxcil. I have another PET scan on January 5, 2009.

I'm not trying to scare anyone and I know that alot of people have had great success in having this type of cancer treated and then being cancer free for many years. Unfortunetly, mine just decided to be stubborn and not leave the first time!

If you ever want to e-mail me, please do! I will answer any and all of your questions to the best of my ability.

Take care!
Angie

By ktelleria
Posted December 24, 2008 at 10:13 am
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Dreamseeker, In 2001 I had ovaries and lymph nodes removed but dr could not remove cervix and uterus because they are needed for internal radiation. (cancer has spred rapidly to lymph nodes) I began chemo and radiation, first 26 external then 6 internal treatments. I was ok and lived with only minor complications until this year. I began to bleed very badly in Sept. At this point the dr could not determine if it was because of cancer or not so he elected to complete hysterectomy and remove cervix and uterus. There are complications and many risks involved. There could be possible damage that is not seen on CT. Radiation does a lot of damage but does kill the cancer cells. I looked up the odds of survival for small cell and elected to take my chances with chemo and radiation. I will continue to fight this each time it rears its ugly head!

The surgery was a success and yes, it was cancer again! I'm glad I elected this surgery. I'm now back to work and feeling relatively well considering. The pain is much worse this time than with the last surgery. I don't know if it is because I'm older and not in as good shape as I was then or because of the residual radiation damage.

I wish you luck on the internal radiation. I know it is rough but will be over before you know it!

Best wishes,
Kimberly

By scoterri
Posted December 24, 2008 at 4:28 pm
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I was diagnosed with small cell neuroendocrine of the cervix and adenocarcinoma of both the cervix and uterus. Complicated of course by the Renal Cell cancer in my right kidney. I was staged at a 2B2 for the small cell and was not given much hope from my then, OBGYN onc. I got a second opinion from a general oncologist that had a more positive attitude. She said we will go after this thing with a double barrell shot gun. That they did. I had a Radical Hyst. and removed my kidne. That wasfollowed by 6 rounds of Cisplatin/ Itopiside. Then I had Internal and External radiation to the pelvic are. First scan follow-up showed No new Cancer. I lived a positive life from then in 2004 until 2006 when I had a mets.to my brain. They offered me the chance to have whole brain radiation in the beginning but the research didn't show a major benifit to havein that prophalacticly so I chose to pass. I have no regrets in that decision since now, after brain surgery and whole brain radiation I am having a difficult time. I just keep looking up and I put my faith and trust in Jesus. Remembering that they told me in 2004 that I only had a 2% chance to survive 2yrs. Here I am Celebrating Christmas another year in 2008. So, don't listen or believe anything that you hear or read that is negative. A positive attitude during this battle means everything. My trust in God keeps me in peace and helping others keeps me positive. Don't give up. We can beat this stuff

By Dreamseeker
Posted December 27, 2008 at 2:42 am
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Hello Ladies, Thank you so much for your responses. My doctor said that if I refused the internal brachiotherapy he would then do a radical hysterectomy because then that would be the only option to save my life.

I am still unsure what to do. I had an MRI of my pelvis & brain I am waiting to see if cancer spread more in my pelvis. I guess I'll decide then. My doctor gets upset with me but it is my life and I am taking control of what I feel might be best. I am so glad that we have this site and each other.
I did hear that postive thinking does give great results to cure cancer. Our minds are a very powerful. I am reading a book that talks about exceptional patients and no matter what stage people are at there are cures! A surgeon wrote this book it is called Love, Medicine & Miracles by Bernie Siegel. Also talks about nutrition. I hope this information will be of a help. We can beat cancer and I thank those of you who tell us your postive stories.
Hugs to All,
Diane

By cmel32
Posted December 28, 2008 at 5:16 am
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Hi to all living with small cell cervical cancer.I was diagnosed in may 2007 with stage 2 b . I did the chemo and the radation ,which ended in july 2007. So far so good. My petscan is scheduled for jan 12. Looking for others living with this disease. Have a group of about 8 women from around the country. If anyone is interested please write. Wishing health and happiness for all.
mel

By shaz
Posted January 3, 2009 at 7:16 am
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Hello All, Happy New Year to everyone. I had my biospy taken from my neck (lymph node) on the 16th December, and the CT scan on the 18th. Went to see my Oncologist on the 23rd (chemo day) and got the results, anything that could of gone wrong did go wrong I'm afraid! I was disappointed beyond belief, yes it is the same small cell cancer in the node and no the 3 cycles of chemo didn't do anything! How annoying hey! They decided to change the chemo to CAV there and then, it takes half an hour now instead of the 2 hours 10 minutes of the other stuff. They are basically treating me with lung cancer fighting chemo drugs now and yep, much stronger than the other stuff! It was the unknown again for me, which I think puts you off the most - not knowing what to expect, you hear all the horror stories about sickness, hair loss, temperature, vein damage. Anyway, relieved none of those symptons came!

I was very tired and slept most of christmas until the 27th December, when I came out of my chemo coma, as I call it!!! My parents came to stay to look after my son, Paul, who's 15. My mum cooked a dinner which I did eat, although couldn't taste! My mum said I seemed grumpier than I usually do on the other chemo drugs, mind you I was having a period as well so probably had a bit of PMT! I was told they would stop, oh no, not mine. I'm as regular as clock work still!

I must admit I am starting to feel quite fatigued in the afternoons now, I suppose it's inevitable - but to the point of halucinating!!!

The Doctor said they will do one more cycle of this new chemo CAV and then CT scan to see if there is any shrinkage, fingers crossed! In the meantime the neck lump is the gauge, if it grows then I have to report to them immediately, if it shrinks it means the chemo is doing it's job. Oncologist also said they need to shrink the neck thing first before they would start radio therapy. Hopefully hey.

By ktelleria
Posted January 4, 2009 at 10:15 am
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Shaz,

Sounds as you have had a tiresome holiday season. The Christmas season makes the healthiest of people tired and cranky. Don't be hard on yourself for this. Do remember to eat healthy. I know it is hard. I remember everything tasting like metal. Yuk! I did drink the boost and other healthy drinks when I absolutely could not eat.

Let us know when you have your CT and the results! Wishing you a healthy new year!

Kimberly

By Lukesmommy
Posted January 9, 2009 at 7:42 am
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Hey ladies. Hope things are going ok with you all considering. I'm getting ready to have my last chemo treatment on the 12th of January. I'm so happy to be done. It's been a long road. I know though that I'm not out of the woods yet and my Dr. has told me the hardest part will be waiting for the 3 month checkup.
Although it scares me that there are so many of us out here with this rare type of cancer, it also kinda makes the journey a little easier knowing there are others out there just like me fighting the exact same battle.

One thing I do want you to remember is that Dr's don't do things the same way and they may think their methods are the best at the time. Mine like others elected to do radical hysterectomy (Not doing one wasn't an option if I want to beat this thing!!!) Have faith in your Dr. But don't be afraid to seek 2nd opinions and voice your concerns to him/her. I'm sure they feel they're doing whats best.

To Dreamseeker:
I haven't had a chance to check out your profile yet so I'm not sure how old you are, but that might have been weighing on your Dr's mind when he talked about quality of life. My Dr. (and I know he's not the only Dr.) in his research has found this type mostly in older women like 60-70 yrs. It has just now started showing up in younger females where I live. I think the older you are (I don't want to offend) the harder it may be to recover from certain treatments.

I have faith that you and all of us will do fine and beat this thing. Wouldn't it be nice in 5-10 yrs to go on a Cervical Cancer Survivor Cruise????!!!!! And celebrate life.

Wishing everyone the best. Keep in Touch

By Momma24boys
Posted January 10, 2009 at 12:05 am
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Lukesmomma.... YAy for almost being done... I had a really long talk with my gyn onc wednesday, and I feel so much better now... Hes given me such a better outlook on survival. Now I just need to make it through my last 4-5 chemo rounds.. The drugs just suck... I hate feeling this way and having no hair also isnt too apeasing.. But to live 10-15-20 more years I would be bald and groggy forever!!!! I have a much better outlook and now I also know a few more things to maybe cut out of my life/diet and some things to add to it to make my self a little less at risk of a reaccurance!
Sorry for the mis-spelling, Im still coming off this dose of chemo... hehe, gotta love chemo brain, huh?!

By Lukesmommy
Posted January 17, 2009 at 12:56 pm
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I finally finished Monday the 12th of January. They didn't think they would be able to do it. upping my treatments to every 3 weeks didn't give my body enough time to recover and my counts were a little lower than usual. Anyway, counts were up Monday and I'm done. I'm glad you're feeling better about things. I too hated the way the chemo made me feel. Especially with having a family, I didn't feel like I was doing a good job being mommy and wife. you just have to let that go and take care of yourself for now as hard as that may seem. Don't be afraid to ask for help and to admit that you need help. Being bald isn't so bad. No shaving and showers are quicker now. I opted to just wear bandanas and hats instead of wigs. I just felt more comfortable that way. Let me know what kinds of things you're cutting out of your diet. That's one thing my Dr and I really haven't talked about, and I really want to start eating/living healthier. You'll be through this before ya know it! Hang in there and let me know if ya need anything.

Welcome to Inspire!

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