Neuroendocrine Tumor

[gilgul]

My mother was recently diagnosed with pulmonary small cell ovarian cancer- it is a neuroendocrine tumor - very rare- very aggressive- we are trying to find someone who has had this diagnosis so that we can determine the chemo combination to go with- some drs want to treat it as lung cnacer but it's not actually lung cancer- my mother doesn't have "time" to experiment - any feedback or suggestions would be considered a gift form G-d- Thank you

[Suz1430]

hi.  this is my first posting on any site.  I was diagnosed woth a neuroendocrine tumor in my cervix approximately 19 months ago.  I went for treatment at sloan kettering in nyc and even they, with their specialized experience admitted they knew very little about this kind of tumor because as you know it is very rare.  I underwent a joint session of chemo and radiation that lasted about 6 weeks and tolerated everything pretty well.  As a teacher I was able to return to work within 5 months.  All was well until about six months later when a pap smear showed some abnormal cells and it was decided that a
total hysterectomy was the way to go.  They were able to do this with a laser robot technology and I was literally home walking within a couple of days.  They suggested a prophylactic course of chemo right after the hysterectomy and I tried to do it but after one session I felt that my body could not tolerate it.  So I chose not to finish that course which they said was fine.  Then a few months later I started to experience pain in my back and leg and had difficulty standing.  I thought it was sciatica and sa my chiropracter who worked on me but seemingly made things worse.  I eventually went to see my oncologist and after an mri was diagnosed with a fractured tailbone. The sloan docs concurred and i started physical therapy but after a couple of weeks i knew something was not right. I ended up back at sloan on new years eve and after a repeated mri they said the spine was not fractured but rather had a tumor on the L6, which is the tailbone. They discussed surgery but did not want to go that route because of the nature of endocrine tumors.  They were afraid that by the time the surgery site healed the tumor would start to regrow.  Instead they opted to do a concentrated form of radiation and have since told me that they think it was successful.  Next month my follow up mri will confirm or deny.  Since the cessation of radiation i have had numbness in my left leg and cheek that makes it difficult to walk and the fatique is often overwhelming.  This time I missed 4 weeks of work and although i am back at work i find it is very difficult to do anything else BUT work because I am so tired. I am supposed to start physical therapy tomorrow and akthough i am anxious to walk down a healing road, I am nervous about expending that kind of energy when i have so little.  My family doesn't understand why I'm not up and around.  I also have such swelling in my legs and feet that it is often painful.  I'm supposed to elevate my feet whenever possible but again there are so many demands...I often get frustated.  I suppose in all honesty I am dealing with these side effects and mine and other people's expectations and the fear of this damn tumor returning...but i know how important it is to keep the stress level low...how do i win?  In addition I have a very inconsiderate boss who has been , let's say, less than supportive then and now.  I hope your mother is hanging in there.  I know it isn't easy.  Maybe it helps to know that you are not alone.  I know it helps me although I would not wish it on anyone.
My prayers and thoughts are with you and your mom.
                                                                Sue

[ilotrl12]

Hi gilgul,
This is my first time on this site and I came across your post from March of this year about your mother & her diagnosis with neuroendocrine cancer. My mother was also diagnosed in Dec. 07  with a high grade neuroendocrine, small cell cancer that started on her gall bladder. She had symptoms of a "gall bladder attack" with pain in her mid chest. She has had 3 rounds of Chemo with Cisplatin and Etoposide, the same combo used to treat small cell lung cancer. She has not responded well to this and the cancer has unfortunately spread into her spine and the tumor has re-appeared on her liver.  The Chemo really wiped out her blood cells, and she has been anemic for about a month now and not able to take any more treatments...so my guess is that this has given the cancer a chance to grow. Anyway, it's frustrating that not much is known about this type of cancer. How is your mother doing?

[gilgul]

thanks for responding sue- my mom had no symptoms- her tumor marker blood work was high (she gets monitored b/c she is a breast camcer survivor) the surgery has been done and we have the TNM /path etc. We are seeking someone with the exact diagnosis as it is very rare and we want to know what chemo protocol anyone else has used....it is a neuroendocrine carcinoma - type: pulminary small cell ovarian cancer- not small cell lung- not ovarian- its own cancer type

[sue3708]

How was your mom diagnosed.  I recently did a urine 5-HIAA and am awaiting the results.  What were her symptoms?  I am having some night sweats and they can't find anything else wrong.  Also very fatiged and weak and lightheaded.

Can they do do surgury on your mom.  has it metasticized?  I think they call this carcinoid?  There is a carcinoid cancer site that I found that has online support.  google carcinoid and see what you find.