Women who don't have BRCA mutations could have other high-risk genes that affect treatment choices
by GTAlumnus on Sun Feb 28, 2010 11:24 PM
My wife, 55 years old has been diagnosed with carcinoid in the terminal ileum. She has had loose bowels for probably 25 or 30 years but after a couple of months of bad diarrhea and losing 20 pounds she had some scans, bloodwork, and a colonoscopy / endoscopy.
A 1 cm "polyp" was found in the terminal ileum "benign in appearance". Pathology report said "segment from carcinoid tumor (well differentiated neuroendocrine neoplasm) and it was coded as "malignant".
CT abdomen, pelvis, and chest showed nothing the docs deem suspicious at this time - 10mm liver cyst, 11 mm adrenal nodule, and 3 lung nodules in 3 different lobes from 2mm to 4.5mm in size. These to be followed up later.
5-HIAA 24 hour urine test was normal, as was blood seritonin. One Chromagranin A blood test was also normal. After a consult with Drs. Woltering and Boudreaux in Kenner, LA, they recommended surgery and it is set for April 21st.
She since has had an MRI which showed nothing suspicious and says the liver cyst is a simple cyst.
Octreoscan was not available for a few weeks but MIBG scan shows nothing.
Had a false start on Octeotide injections - supposed to be 150 mcg 3 x a day, but had trouble with insurance. After she did a couple of 450mcg shots daily she got terrible abdomenal pain and stopped per advice from the Ochsner Clinic (Kenner). We now have the medication and will do the proper 3 x 150 starting tomorrow for 2 weeks, than go on the LAR.
The Kenner docs seemed very optimistic - Dr. Woltering more so than Boudreaux who was somewhat more cautious, as he says 50% of the time they find more on surgery than what is on any scans.
There are other tumor markers such as Pancreastatin and some others that we don't know about yet, but my wife is frankly not convinced this is carcinoid.
Reason being, Dr. Woltering asked for Ki67 and another stain on the tissue but none was available. My wife wonders if it has even been diagnosed properly by the Texas pathologist and wants to do another colonoscopy and get another sample.
by SueCz on Tue Mar 02, 2010 04:04 PM
This maybe a repeat partially, I had started a response and my page refreshed & it was gone ! never happened with my MAC before!
I was concerned re: your post until I got to the Woltering/Boudreaux part. You are in good hands. Carcinoid is not only unfamiliar to 90% of oncologists, what they remember and still treat according to is what was learned in Medical school. Knowledge has created a 180* turn in treatment and how the disease progresses. You really need to have a Carcinoid specialist. It is also a very individual presentation as far as hormone produced etc. Depends on tumor location. My primary was also a 1.8cm ileal tumor with 6 positive nodes, diagnosed in 2002. I have severe carcinoid syndrome. Sertonin is not a reliable marker as it changes quickly for many reasons. The most meaningful and consistent markers are Pancreastatin, the TREND of CgA(chromagranin A),KI67 staining. 99% of the time more is seen @ surgery then expected. I am sure Dr W has looked @ the slides from the polyp himself, they are usually sent with your records. If Dr W says be optimistic, go with it. Since Octreotide has come along, quality of life and length of life has improved dramatically. You have many reasons to be positive.
Are you also a member of the carcinoid support group on ACOR? http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A0=CARCINOID and the www.carcinoidcancer.org is our Bible, you will go back to this site over & over. It will lead you to everything carcinoid. Also the www.caringforcarcinoid.org is very helpful.
You are doing all the right things, keep looking forward.
by GTAlumnus on Wed Mar 03, 2010 08:47 PM
Thanks. She spoke with Dr. Woltering yesterday and he assures her that the pathology report really can't be wrong and that the tumor has to come out regardless of what the Ki67 stain would have shown, and they will do that when they get it out.
She really currently has no symptoms at all and is on the 3rd day of Octreotide shots and doing fine. Mentally it is a struggle as the prospects of losing half a perfectly healthy colon is tough. Not absolutely sure this would happen, as the LA docs use the blue dye method to determine where they can stop, but the tumor is only 5mm from the ileocecal valve. She has great concerns that the surgery will change the current status of no symptoms to chronic diarrhea, especially given her history of loose bowels. Of course this is potentially life saving surgery, so that of course is why it has to be done, but of course we also fear what they will find when they go in there.
It is primarily discovering and reading this board that directed us to get a consult with Ochsner experts. The gastro doctor was ready to refer us to a surgeon who would do the hemicolectomy laproscopically, so the abdomen could not have been carefully explored as with the laparotomy she is going to have.
by SueCz on Wed Mar 03, 2010 10:09 PM
I understand completely where she is mentally. I have several things to hopefully help with all this. It is similar to the idea of having another cancer, such as breast come about. No symptoms but the protocol maybe removal of the breast followed by chemo/radiation. The length of bowel removed is determined by the extent of disease seen when they see what is inside and lymph nodes, etc. I am not familiar with the blue dye you are talking about, but you must be relieved to have direct vision, especially with carcinoid, a lot would be missed with a laparoscopic approach. Carcinoid may present as seeding throughout the abdominal cavity, too small to be visualized on scans, but raise havoc because of hormones secreted and of course future growth. My tumor obstructed the ileocecal valve and I do not have short bowel syndrome. Short bowel syndrome is related to the lenght of bowel removed, esp the small bowel where absorption takes place. Dr W or Dr Boudreau will let her know how much bowel was removed and consequences of the resection or whatever is done during surgery. It is scary to contemplate the results of the surgery, but the results of not doing the surgery are scarier. She also has the possibilty of only needing a localized resection and being cured by this surgery. Dr W's group has been involved in much of the research regarding Octreotide and inhibition of tumor growth. They have recently published a paper, one of several published, showing the use of Octreotide inhibits the growth of carcinoid tumors. That is why even though she is not symptomatic for carcinoid syndrome, he is prescribing Octreotide. Also all the current medical literature here and in Europe advocate removing the primary tumor as essential to achieving either a cure or for long term survival. Many,many patients are doing well 12-15 yr post surgery. Loose bowels are a classic symptom of carcinoid though, so she is symptomatic and hopefully her diarrhea will be stopped with this surgery. Prior to my bowel resection I was having diarrhea 20-24 times/day. I have severe syndrome, MANY hospitalizations and treatment courses. I still have a hard time excepting that I need these difficult treatments because I am one of those patients who have had an upward trend of CgA, but no oher markers. I have Liver mets progressing according to MRI's and flushing and BP issues among other things.
The ACOR site I referred you to, is monitored by Dr W, he is an active participant. This is how I know so much in regards to his practice. In fact you will probably run into folks from the site @ his office or in the hospital or even respond to this email. They are a very friendly close group, arranging to meet when in NOLA. I do not want to overwhelm you, deal with what is happening now. Depending on the outcome of her surgery, if you really want to know all possible about this disease, www.carcinoid.org is the place, after the surgery you may need or want more information.
I am glad to help anyway I can. I hope you find some peace knowing you are cared for by THE GUYS for carcinoid.
P.S If you prefer, you may email me privately. I have given my home number out several times if you feel your wife would like to talk to me.
--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--
by GTAlumnus on Wed Mar 03, 2010 10:19 PM
Thanks, so much, sounds like you have had a very rough go and I pray that it can be controlled. I guess we really don't know anything and won't until the surgery. It is such long way into the future due to our own schedule and they thought it would be fine.
BTW she will be having the octreoscan exactly 7 days before surgery as I believe this helps in the use of a gamma probe to detect tumors.
I have read for weeks til I am blue in the face and frankly the information is conflicting. One place you read where ileal carcinoids have almost always spread when they are found, and other places you read where only 10% of ileal carcinoids as small as 1cm will have spread even to the lymph nodes. There is alot of information out there and it is hard to figure out what is the truth. I will take a look at those other sites, maybe I have been there before as I have been all over the place looking for answers.
by SueCz on Thu Mar 04, 2010 12:28 AM
You need to be good to YOURSELF also ! You are BOTH going through a time. Step away from the search for awhile. You have done all the right things. It is what it is. Nothing more to do for now except for each other. You have obtained the best possible care for her. Take this time to eat well, rest, get outside in the sun wherever you are. Both of you. This can be a bittersweet time. Seeing all the good, afraid it may change, it's all part of your journey and something you may only appreciate later. You have the gift of time to assimilate it all and approach the surgery feeling you made the right choices. If you are immersed in doubt and it just doesn't feel right, do not proceed until all your concerns are addressed.
Keep us informed!
Do not go crazy taking herbal supplements to get healthy for surgery! A lot of them react adversely with Anesthesia and healing. Do not add any new vitamins etc, without clearing them with Dr W.
by GTAlumnus on Sat Mar 13, 2010 06:56 AM
Just an update, the blood work done in Kenner last month which included another CgA, Pancreastatin, and one other test (she already had the 5-HIAA and blood seritonion which were normal), all came back normal also.
So at this point the only indication of carcinoid is the colonoscopy finding with biopsy.
She is getting the 30mg LAR shot Monday, I hope it is not that painful and that they mix it correctly. Right now her bowel habits are perfectly normal, and while she does not "flush", never has, she does have the visible blood vessels on her cheeks. But they never change - they are always that way.
She is also feeling good and in better spirits. Still in denial and not looking forward to losing half her perfectly healthy colon however.
by SueCz on Sat Mar 13, 2010 03:37 PM
Glad to hear from you. It is good news that her blood work is normal. It does not however mean the carcinoid is gone, but it may indicate her tumor is a well differentiated typical tumor. A slow growing tumor. Dr Boudreaux will have the pathologist perform a KI% staining on the tumor. This will tell how rapidly the cells are dividing, thus a measure how fast a recurrence could occur and a good idea of the course of illness. I gorget the exact numbers, but below 4% is very good.
It is great that she is responding to the Octreotide shots. Diarrhea is exhausting and she will be able to nutritionaly prepare for her surgery. Responding to Octreotide is important as far as future treatment modalities and symptom relief.
Dr Boudreaux will leave as much small bowel as possible. He is well aware of the effects of removing a large segment. I do not feel I have any effects from the ileal cecal valve being removed. Even after 4 1/2 years treating liver mets and syndrome, I still find it hard to accept how severe my syndrome is in the face of normal lab values. I did have that trend going on. Each month it crawled up a little from 32 to 110. It responded to treatment. Trend is key.
This is the hardest time, waiting to move forward. Please keep in touch!
by sannaloro on Mon Mar 29, 2010 06:48 PM
Do you live in LA?
by GTAlumnus on Mon Mar 29, 2010 06:50 PM
No, we live near Dallas
When you track a discussion, you will get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to track this discussion?
If you stop tracking this discussion, you will no longer get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to stop tracking this discussion?
We care about your feedback. Let us know how we can improve your CancerCompass experience.