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 SisterLove
Posted November 17, 2009 at 10:41 pm
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Angela,

My prayers are with you as you start this crazy journey. I, myself, have not faced the diagnosis of cancer, but my sister was diagnosed with Neuroendocrine cervical cancer stage 1B2 January 15, 2009. It has been a long journey, but through it our family has become so much closer and you really realize what is important in life. We have shared so many tears - but more importantly - SO many laughs. She is 6 months post surgery and 3 months post her last chemo - cancer free so far.

What type of chemo are you going to have? My sister has a caringbridge site as well - I don't know if it helps to read stories for you or not, but if you want to check it out, it is http://www.caringbridge.org/visit/jaclynguthmiller

My prayers are with you. Remember to keep your faith, hope and surround yourself with love.

Blessings,
Katie

By angelavant
Posted November 16, 2009 at 11:09 pm
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Hello ladies, I am so inspired by all of your stories. I joined tonight after a loved one found your discussion and I am so happy to see that I am not alone. After an abnormal pap in Sept. '09 I had the colp and the cone biopsy, A week ago I was diagnosed with stage IV Neuroendocrine Small Cell Carcinoma of the Cervix, after finding metastases in my liver, spleen and lungs. I went for a brain scan today which came back clear and has been the best news so far in this ordeal.

You are all corrrect that the general "prognosis" does not appear to be good at all, and from what the doctor told me today-not many really have any idea of what to do with us!

to APLISUNATL: do you think the stage IV survivor you mentioned may be willing to communicate with me? I would be so grateful! Also-who is doing your stem cell transplant?

Are there others on here doing stem cell? My Doctor said there are no clinical trials for this type of cancer-is this true?

I started a Caring Bridge web journal, if you have not done this it is a great way to keep people who care about you informed without being overwhelmed in the process. My site is: www.caringbridge.org/visit/angelavant Let me know if you all start a site and I will follow

With Love, Angela

By AplusinATL
Posted November 10, 2009 at 11:52 am
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I will be going forward with a autologous stem cell transplant after thanksgiving. I have already done the stem cell harvest. For the harvest you do shots of neupogin (sp?) to stimulate the bone marrow and free more stem cells into the blood stream. Then through a process similar to platelet donation, they run your blood through a centrifuge and cull out the stem cells they need. Once I've gone through testing to make sure I'm ok to go I'll receive a super high dose chemotherapy to basically wipe out the bone marrow system. Best analogy is like shutting down and rebooting a computer. Once the chemo wipes out what's there you get the stem cell transplant to restart the system. The transplant Dr told me that they are not trying to buy anyone 6 months, their goal is for me to be cancer free to play with my grandkids. I think the idea is to get rid of any final cancer cells that could be lingering or hiding in my body (I have had chemo and surgery to remove any detectable cancer) and thus prevent recurrence.

Ariel1-- keep in mind, I am getting a stem cell transplant for small cell neuroendocrine carcinoma, not regular cervical cancer. I believe the 2 cancers behave very differently (I'm not really sure). I think my treatment plan has been based on the similarity of scnc to small cell lung cancer. If they had found squamus cell type then I think I would have switched to radiation therapy. Maybe refer your Dr to article "Prognostic Factors in Surgically Treated Small Cell Cervical Carcinoma Followed by Adjuvant Chemotherapy", CANCER August 15, 1998 / volume 83 /number 4. It is one of several articles provided to me that I think were used to demonstrate the need for my transplant to the insurance co. I don't know how comfortable you are reading medical articles yourself. I have no medical background but got through it. I know one cancer patient who hired a medical consultant to go through information for her.

Hope I've helped.

By mumbai
Posted November 10, 2009 at 6:19 am
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Dear Amaryllis,
Thank you so much for your reply.
Mum has taken 5 rounds of etopside and cisplatin and her treatment does'nt include Taxol.
Her Doctor says it is'nt neuropathy as neuropathy is always bilateral, which means that she would have felt it in both hands. He said that some nerve must have got blocked/hurt during the chemo.
The pain is a little better but she still needs to take painkillers for it.

Mum is 60 years old, her biopsy was on the 24th of July and first pet was on the 3rd of August 2009. It showed small cell cancer in her lungs, bones, neck and cervix etc (cervix primary). At the time she had back pain and pain in her left leg as well.The pet on the 3rd of oct ( after 3 chemos) showed no cancer cells and said she had a near complete response.
I really admire you for your courage. I hope and pray that you have the strength to face this challenge. Good to know that your not letting this hamper life and are enjoying every day to the fullest.
I told mum that her cancer is an aggressive type and so there are chances that it might come back. Her doctor has not had a very open discussion with us about the chances of a relapse. Maybe such a good response to chemo could prevent a relapse altogether? As there are people who have survived for over 10 years, she also has a strong spirit , she runs a school ( for children who cannot afford ) and has been working from home since her diagnoses.

thanks again for your advice and guidance, it is very inspiring to hear your experiences as I know that it is a very tough battle, It would be nice if you can share your story and experiences.
wishing you all the best

Prachi

By ariel1
Posted November 9, 2009 at 9:59 pm
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aplus, you mentioned stem cell transplant in your last post. you said your dr wanted you to try it maybe end of november. could you explain a bit about this treatment as i didn't know it worked or was even available for cervical cancer. thanks
mary

By AplusinATL
Posted November 9, 2009 at 11:47 am
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Glad to hear there is a dr in Orlando having success, but if that is too far then you should also consider Dr. Benedict Benigno in Atlanta. I am currently a patient and I have spoken to one of his earliest patients who is now a 12 year survivor (and like me, she was stage IV at diagnosis)...best of luck.

By ktelleria
Posted November 7, 2009 at 5:32 pm
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megsmommy....

Has your daughter met with the drs at Vanderbilt? Orlando seems like a long trip for you. Dr. Finkler is a great dr and has been my dr for many years. However, I would think Vanderbilt would have excellent drs also. Maybe if you contacted Dr. Finklers office they would know of a dr in TN who shares his expertise.

Best of luck to her! Let me know if I can help in any way!
Kimberly

By megsmommy
Posted November 7, 2009 at 12:44 pm
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Cario36,

I'm really sorry to hear about all you have been through. It amazes me that my daughter's has spread to the abdominal lymph nodes so quickly. I'm not sure where Columbia, TN is, we are in Maryville, just south of Knoxville. The doctor's at UT Medical have given up on my daughter and suggested clinical trials as well. But they said since this is so rare, it will be hard to find one. She is going to go to Vanderbilt in Nashville for a second opinion, but I am hoping that we can get her in to see Dr. Neil Finkler in Orlando, FL. From what I read here and on the internet about him, I truly believe he is her best chance. Maybe he is a possibility for you as well. Good luck and God Bless.

By love2sing
Posted November 7, 2009 at 8:50 am
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Hi Megsmommy - I was successfully treated by the brilliant gyn/oncologist in Orlando - 10 year survivor of Stage 1B1 small-cell neuroendocrine adenocarcinoma. He stays on top of all the latest information and treatments of SMCC. There is another gal on here too that is also his patient, and will agree that he is a remarkable doctor - so unlike ANY I've ever had. His name is Dr. Neal Finkler at the Florida Hospital Oncology Center in downtown Orlando - you can google his name to read more about him - he is very popular and has an extensive practice so sometimes getting in requires a wait, but worth it! His staff is excellent - caring - patient - informed - the other docs there are also excellent. Good luck and God bless you on your search for answers - and congrats on your new grandbaby!!

By megsmommy
Posted November 6, 2009 at 1:49 pm
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Hello All,

My daughter was diagnosed in May 2009 with small cell neuroendocrine carcinoma. She was pregnant at the time. They started her on chemo right away and when she got to 34 weeks they delivered my grandson. He is doing well. After 6 rounds of chemo and 35 radiation treatments, the cancer is still there and has spread to the paraaortic lymph nodes of the abdomen. They are referring her to Vanderbilt hospital because they don't feel there is anything else they can do for her. I would very much like to know the name of the Oncologist in Orlando that I have read about in this website. Would it be possible to get his name. I'm not ready to give up my daughter and she isn't ready to give up being a mommy to her 3 small children. Any advice would be greatly appreciated.

By mumbai
Posted November 5, 2009 at 11:23 am
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hi again
I need some advice, the thing is that mum believes that she has been cured and there is no way that it can come back. But because she had extensive metasises when diagnosed the dr says it is incurable. If we tell her this her spirit will surely be broken and she might even refuse further treatment. The dr said it was it was for us to decide how much we should tell her and agreed that she would be devastated,
Please advise,
Thanks

By mumbai
Posted November 5, 2009 at 11:17 am
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Hi,
Great to hear of your progress shaz,
Mum's finished five rounds of chemo now, and she is feeling much better, her back, hip and leg pain have vanished. She was having some pain on her left arm though. Fingers selling, burning and numbness couldn't sleep well, dr said it could be because some nerve has got disturbed and massaging should Help.... It is better, other than this she is so much better... We are in delhi now and have a very good dr. He said she is in remission but it can come back, nutrition and will power will decide on what side of the statistics we are...
we read one true cancer story from chicken soup for the surviving soul, every day... it helps...
Stay strong and god bless

By shaz
Posted November 2, 2009 at 8:02 am
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Hi haven't written on here for sometime - I am doing really well and have been on a Stage 1 drugs trial at the Royal Marsden in London - the drug "cediranib" is not bad at all. I feel great. 5 weeks into the trial and had a scan last Tuesday, won't get the results until i've been discussed at tomorrow's meeting, then if it's bad news I will be written to. So hopefully I won't get any letters in the next couple of weeks. I am due to go back to hospital for the next set of scans on the 24th November and fingers crossed all is OK. Just by feeling the lymph node in my neck, it's shrunk from 4 cm to 1cm, so things do look promising at this early stage. My advice, go for it. It's OK, obviously a bit of a committment travelling up to London weekly for 2 months, but, you can claim all the expenses, it's such a great hospital too, everyone is really friendly. Take care all. Shaz xxx

By cardio36
Posted October 26, 2009 at 8:48 pm
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Hi Ladies, I was diagnosed in November 09' with nueroendicrine carcinoma small cell stage IV with lymph node involvement. I am 36 years old and a Cath Lab nurse and have 3 children. Had very bad headaches for about three weeks and decided to have a MRI done at work and they found a tumor on my brain. After more tests they found lymph nodes in my abdominal area that were infected also.Thats pretty much how it all started.
I had brain surgery to remove the tumor, which went very well. Then started 1st round of chemo with Cisplatin and Etopiside, stopped in the middle of the treatments because blood counts got off track. At that time my dr's decided to do a round of radiation of the brain to make sure they got it all. Then I finished my chemo treatments. Had a full hysterectomy and had affected lymph nodes removed. All came back negitive for active cancer cells. Pet scan showed I was cancer free at that time. Started living life again, spending time with my kids. Had tests done every 2 months after the treatments. 4 months into remission its BACK!! They found another tumor in the abdominal area that glowed on the pet scan as did sevseral more lymph nodes. Back to chemo treats. This time they used Topotecan with no results, the cancer has grown during treats. Now they want me to go into clinical trials. I need some help deciding what step to take next, seems like clinical trials are last resort, but I hear your wonderful stories of certain dr's who have kept hope alive and in some cases beat this for many years. Any advice would be good here. No one seems to know the next step for me.

By AplusinATL
Posted October 19, 2009 at 12:32 pm
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Hi everyone-- just joined after reading all the posts...hope today finds everyone feeling well. Briefly, here's my story... I was having unusual bleeding, periods coming more frequently, so I went to gyn. in Jan. who thought prob peri-menopause (I'm 45), the cervix looked normal then and I had had normal pap in May '08. Didn't feel like menopause to me, but I was told to start pill or try to wait it out a couple months, so I waited and it got worse, so I tried pill and it got worse, finally bleeding was everyday so I went back in and cervix looked different so Dr did biopsy and 2 weeks later I had cancer diagnosis on a Fri., saw oncologist on Mon., CT on Tues., Wed. told was stage IV, and started treatment the very next Mon.

I started cisplatin and etopocide, 3days of chemo in a 28 day cycle, which is very tough the chemo week, but I also felt very good by time I had to go again. Originally my tumor was too large for surgery, but shrunk 50% after 1 round of chemo and continued to shrink so that I was able to have a radical hysterectomy at the end of Sept-- done robotically. Also removed ovaries (as a precaution since healthy at time of surgery) and some lymph nodes. My Dr has now recommended that I have a stem cell transplant in the hopes of destroying any remaining cancer cells. If I go forward with stem cell transplant, I will begin at the end of November. (I already collected my own stem cells for use in transplant).

To momma24boys-- no radiation proposed for me at any time in the process. After surgery the first pathology reports were unusual and there was a possibility that what was in my lymph nodes was squamus cell type cancer and if that had been found I would have had radiation. Further staining confirmed original diagnosis of small cell neuro. car. so we are sticking with original plan of no radiation.

To ookiesmom and everyone-- I have been told that pap smear cannot detect our type of cancer (of course, still important to keep up with them to watch for more common types of cancer/precancerous changes). I will also be getting frequent PET scans following treatment to watch for recurrence.

To our sister in Ontario-- you have probably already gotten your 2nd opinion, but if not, or for others, I am also being treated in Atlanta at South Eastern Gynological Onc. (SEGO) by Dr. Benigno and Dr. Feuer and they have experience with this particular cancer. They put me in touch with one of their patients whose initial diagnosis was even worse than mine (also stage IV) and she is now a 12 year survivor. It was great to talk to her. I will rely on my Dr.s to make sure that I improve all those scary statistics out there.

Keep strong everyone.

By mumbai
Posted October 11, 2009 at 5:49 am
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hi everyone,
Really happy to know that ur doing good shaz , pray for you everyday.
Mum's completed four rounds of chemotherapy, we did a pet on the third of october and thrilled to find out that they can't see any cancer aware, just two months ago it was showing all over her body. The doctor said it is a miracle. We are so happy, but he said she will have another round of chemotherapy . The side effects are quite a bit. the vomiting and nausea stays for a week after chemotherapy , nerve pain is there and she has a very bad appetite. Does this mean the cancer is gone forever? Or can it come back , she was taking cisplatin nd etoposide for three days every eighteen days, she was stage 4b too, with mets to lungs, neck, bones etc . Is this a miracle?

By shaz
Posted October 10, 2009 at 3:22 pm
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2 weeks in to the drugs trial - no real side effects and I feel OK. I am sure that positive mental attitude has a massive part to pay, as I am a stage 4b - I am still here a year later and I am looking and feeling good! Just carrying on as normal x Hope everyone is well x

By ktelleria
Posted October 3, 2009 at 10:42 am
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Heather,

As you can see there are many of us battling the sccc. Many of us are long time survivors. Never give up hope. It is important to have a healthy outlook as well as a healthy life style. Are you still in treatment? Let me know if you need anything. You can also find me on facebook.

Keep up the fight!!
Kimberly

By heathfeath
Posted October 2, 2009 at 12:10 am
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i too, had googled this cancer, and am happy i did, because of what i learned but at the same, not thrilled, because of all the bad i found out. i was diagnosed july 2, 2008. and am still battling this disease. trying to be as strong as possible and hopeful. its sad to see other woman with the same problem, but also a relief to know im not the only one in the world, like i origionally thought. reading your story gives me hope, and i just wanted you to know that. - heather

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