Small Cell Cervical Cancer

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

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.

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 

 

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

 

 

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 lymph

3 You must be a non smoker

4 You must not have any other serious illness such as HIV or chrons

5 You must not be an alchoholic or drug addict

6 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.

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

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.

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

 

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.

 

Kerri

Hi 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 DIAGNOSES

1b1 

TREATMENT RECEIVED

chemotherapy Carboplatain and Etoposide, radical hysterechtomy including removal of ovaries

radiotherapy 5 weeks external 2 internal. 

TUMOUR SIZE AT SURGERY 

10mm by 14mm

 LYMPH NODES INVOLVED 

 NO

 2 YEAR SURVIVAL  ?

 

 5 YEAR SURVIVAL  ? 

   

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?