[livingwith]

I am a 54 year old female diagnosed with Carcinoid tumour of the ileum with Lymph node involvement. I had a bowel resection done 3 years ago and continue to be symptom free. My Chromogranin levels have been increasing lately and there is suspicion that another tumor is growing somwehere. I also have MS Irregardless, I live life to the fullest and just got remarried in November 2008. I can’t seem to find other people who have stories to share regarding Carcinoid Tumors.
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[MarineMom500]

[quote="livingwith"]I am a 54 year old female diagnosed with Carcinoid tumour of the ileum with Lymph node involvement. I had a bowel resection done 3 years ago and continue to be symptom free. My Chromogranin levels have been increasing lately and there is suspicion that another tumor is growing somwehere. I also have MS. Irregardless, I live life to the fullest and just got remarried in November 2008. I can’t seem to find other people who have stories to share regarding Carcinoid Tumors.
[hc_livingwith=livingwith.oncologychannel.com|/carcinoid-malignancy/20090105_7530||20090105_7530]READ[/hc_livingwith][/quote]
From: Marinemom500 It has been hard to find other's that have this ! (Stuff) had to be nice about it. mine started in the appendix back in april of last year, they said they had gotton all of it and i would be fine, well in Oct. my liver had enlarged to over twice its size now and the spleen as well. they have found a spot in the Liver and now in the right kidney. They have also found 2 more very small spots on the ileum too small to diagnose at this time. I feel for you so much and know first hand what you are going through. Please stay in touch ....I would like to know how you are doing... Lots of Love

[deedum55]

[quote="MarineMom500"][quote="livingwith"]I am a 54 year old female diagnosed with Carcinoid tumour of the ileum with Lymph node involvement. I had a bowel resection done 3 years ago and continue to be symptom free. My Chromogranin levels have been increasing lately and there is suspicion that another tumor is growing somwehere. I also have MS. Irregardless, I live life to the fullest and just got remarried in November 2008. I can’t seem to find other people who have stories to share regarding Carcinoid Tumors.
[hc_livingwith=livingwith.oncologychannel.com|/carcinoid-malignancy/20090105_7530||20090105_7530]READ[/hc_livingwith][/quote]
From: Marinemom500 It has been hard to find other's that have this ! (Stuff) had to be nice about it. mine started in the appendix back in april of last year, they said they had gotton all of it and i would be fine, well in Oct. my liver had enlarged to over twice its size now and the spleen as well. they have found a spot in the Liver and now in the right kidney. They have also found 2 more very small spots on the ileum too small to diagnose at this time. I feel for you so much and know first hand what you are going through. Please stay in touch ....I would like to know how you are doing... Lots of Love[/quote]
Hi Marinemom
Geez! Life can sure have its ups and downs! Can be a struggle sometime! what symptoms did you have when you were diagnosed with carcinoid in the appendix? How are you feeling now with all the other, as you said (stuff) going on> I am so very sorry that you have to go through all of this? It can be scary?
When I got diagnosed with MS back in 1995. I was truly pissed off as I just started a new career. After 41/2 years of working at my new career, I had to go go on long term disabililty! I was indeed choked as I loved my job. the MS symptoms come and go, although they have been bugging me allot more as of late. (Lots of nerve pain)
My new husband is very supportive! My ex decided to leave me only a few months after my carcinoid resection of my ileum. Other than that, I have two beautiful grandbabies and 2 more on the way.
Do you have children? They live in another province, but my 22 month old grandaughter talks to me on the phone daily which raises my spirits tremendously.
My thoughts will be with you. Stay strong and positive and know that I will be here to support you.
Love and big hugs to you
Deedum

[asfret]

During September 2009, I had my 10 year colonoscopy, I am 68 years old. Fortunately, the doctor observed a very small area, about .2 cm, near the ileum, that appeared abnormal, and the pathology indicated a carcinoid turmor. Long story short, I had a CT scan and a octreotide test which reflected a small mass about 2 cm x 1 cm. Based on this I was referred to a surgeon and had a hemi-colectomy on 5 October. Out of the 17 nodes present, 5 were malignant. When referred to an oncologist, he advised that this type of tumor resists treatment by chemo or radiation and the fact that if there is any metasis it is very slow. Is there anything you can tell me about the carcinoid turmer you have experienced other than what you reflected in your posting?

I am happy that you are enjoying your life to the fullest, because I am a very active person and don't want to stop my past life from continuing. Also, is it normal to continue to have aches in the abdominal area post-op? It has been about six weeks since my surgery.

Thanks for your time in responding to this.

Bob

[deedum55]

Hi Bob!

Sorry to hear that you had to go through this! I ahve done allot of research on carcinoid tumors and it seems that men mostly get the carcinoid in the terminal ileum. Women in the appendix. My carcinoid was in the terminal ileum. My bowel was resected 4 years ago and out of 7 lymph nodes, 2 were malignant. I continue to have Chromongranin A tests done every 3 months and have had 3 Octreotide scans done in the past 4 years, the last one was very recent. I guess the biggest concern for us with the ileum carcinoid is the risk of carcinoid crisis where it could metasize to the liver.
So far I have been lucky although the levels of my chromogranin A results have been fluctuating up and down and have been abnormal.

As far as discomfort post surgery, I still have discomfort there even after 4 years. Bile Salts and absorption take place in the terminal ileum, so you might experience irritable bowel syndrome.
Other than that! life goes on as normal. The hardest part for me is the forever "waiting game" and the not knowing when and if there will be a recurrence. I try not to think about it, play golf and live life to the fullest as you will too. Just give yourself sometime to heal and I am sure you will be just as active as you were before! Take care and keep intouch. It really is hard to find another person who has had this type of cancer whom one can relate to.
Take care and best wishes for a speedy recovery
Diana

[asfret]

Thanks and God Bless you. I know you will be a survivor and I hope and pray that will also be one for several years to come.

Bob

[Lynette Anne]

Thank you so much for these posts. They are helpful as I feel so isolated with this diagnosis. I had a large growth in the ceacum and going into the illium fossa with 8 out of 10 lymph nodes removed malignant. I am waiting for follow up radioactive scan in May which feels ultra scary. Do I or do I not want to know. On week 7 the pain at surgery site is lessening but healing certainly took some time.Take care out there Lynette

[ktorsell]

Well, I'M a tad bummed out now!...I'm 43, about 10 years ago I had a plethora of issues that I called "attacks" in my gall bladder area. Hospitalized several times, no one could figure out what was wrong and I was told that it was in my mind. A year ago, I started having facial flushing, palpitations, and what doctors told me where anxiety attacks, did lots of Ekgs, wore the heart monitor...nothing. I was told that I needed to go on Anxiety meds. In May of this year, I became very ill and had a massive "attack". I went to the ER, the doctor in the ER happened to be a personal friend of my husbands and admitted me for further testing although he could not find anything. I had a CT, and an endoscopy; it was the Hida scan that showed I had a diseased gall bladder. They removed my gall bladder and I was released 6 days from my visit to the ER. Seven weeks later, I became extremely ill and my primary ordered a CT of my appendix. I had an emergency appendectomy 4 hours later. At my f/u appt. w/the surgeon, he casually told me as I was leaving that they found a carcinoid tumor on my appendix, it was no biggie..."don't turn this into a big deal." I did a f/u w/my primary who referred me to an oncologist, she did a scan, it came back negative and she shooed me out of her office. A month later, I wake up with Bells Palsy - within a month, I had ear pain, ear pressure, tinnitus, acoustic hearing and severe pain radiating down my shoulders. As this was going on, the GI doc that did my endoscopy ordered a colonoscopy and a camera endoscopy. The camera endoscopy came back pos. for at least one tumor on my lleum. I'm in the middle of my second scan in under 3 months. The lymph nodes in my neck and face are swollen, I'm breaking out in sporadic hives, my flushing is off the charts, I lay down and it feels like I'm getting small bursts of electrical shocks throughout my body, my stomach in bloated, etc. etc. All hell has broken loose in a month's time. They are telling me that I have Carcinoid Syndrome and that it's wreaking havoc on my lymphatic system. I'm waiting for my scan results and for them to get off their keisters and take this tumor out. I would love to go back to the sarcastic surgeon who told me to get on w/my life and not make a big deal out of it...and punch him in his face. I'm just angry. I feel like I'm walking around with a bomb strapped to my body and it can detonate at any moment. I'm not afraid of leaving this world, I just don't want to go right now. I have 4 year old natural triplets, all of whom are on the Autism Spectrum, a 13 year old and a 21 year old that's having my first grandchild, due Christmas Day. I pre registered at the Mayo Clinic in Jacksonville, Fl. We are going to apply for grants to pay for treatments and I plan on signing up for all and any clinical trials. What have I got to lose at this point? I know that without grants, there is no way I can afford $600 a month shots or meds., I'm perplexed.