I know that percentages are just calculated odds, and some people beat them. It's a little deflating though to think that my first fight with Cancer may have only been the beginning. I know that I have the best doctors in the world, and the most supportive friends and family anyone could ask for... but sometimes, I feel a little rushed to hit the "Rewind" button and just get back to the way things were before my diagnosis.
I never want to alarm people or cause problems, so I pretend a lot. I pretend my joints don't hurt so badly that sometimes (like today) I can barely walk or move. I pretend my fevers are gone, and I'm sleeping well. I pretend I don't need nausea pills anymore, and all my "plumbing" is humming like a well oiled machine. I pretend I'm not worried that I still may be dying. Dr. Nash has made it clear that there is really nothing to do but wait - nothing will relieve the lingering aches and pains and anxiety; no magic pill or treatment can erase all that's happened to my body as a result of the Cancer - so what else is there to do but pretend that everything is fine? After all, isn't hope just another form of pretending?
I know that I should be celebrating the gift of a second chance, but to tell you the truth I sort of feel like a wimpy kid with a shiny new bike who has to ride home past the neighborhood bully everyday. It would be so nice if the bully just went on a family vacation for a while - at least until I got a little faster, a little stronger, and could outrun him. I guess if I do have to face him, I should remember to "fight like a girl" - and win.
** UPDATE: After I posted this, my sister (who is in medical school) reviewed the medical literature and said that the statistics were not given enough context to support a generalized 80% recurrence rate - which is great news! I have tried to find something concrete about recurrence rates without success... If anyone has good resources on recurrences of Carcinoid tumors of the appendix (greater than 2cm) following a right hemicolectomy - please forward them!
** UPDATE: I saw Dr. Nash in April 2011, and he estimates my recurrence rate to be as low as 10%
I hate to think of you sad and scared. But I'm glad that you shared your feelings. I love you so much sis and hope I get to see you soon. Much <3
ReplyDeleteCould you send me a link to the article? <3 m
ReplyDeleteTotally understand your concerns and worries. This looks pretty encouraging though. Thought I would pass it along! :) Hope you had a great Halloween!
ReplyDeletehttp://www.msdlatinamerica.com/ebooks/GastrointestinalOncologyPrinciplesPractice/sid1007071.html
Lisa you're amazing! That is the first real study with actual statistics that are both positive and have enough context to be meaningful...THANKS!! Thinking of you a lot, and hoping you are back feeling great and taking wonderful pictures! You must have had a lot of costumes to put together for your kiddies :)
ReplyDeleteYou're welcome Marlena. :) I'm really trying to adjust my mental state and be positive. I refuse to live my life in constant fear and worry. Something is going to get every last one of us someday, you know? But I feel good today, I'm here with my family and that's what I'm going to go with.
ReplyDeleteHalloween was fun! The kids had a great time trick-or-treating and got lots of candy. Now if only I'd stop sneaking into their stashes...haha
Off to contend with diapers, laundry, and dishes. :) Hope you have a great week!
Marlena,
ReplyDeleteI remember my oncologist telling my my NET was benign but always questioned the statement since mine was 5 cm (distal pancreatectomy and splenectomy). Stay vigilant with the tests and scan and pray that any recurrence is found quickly. Mine doc had only had a few patients in his career so the recurrence was diagnosed (mets in liver) he sent me to MD Anderson. Should have gone out there in 2009 on my own - would have caught them sooner and maybe been able to operate. I am now taking Afinitor (everolimus) and at least keep them stable and at best shrink them.
Thanks very much! It seems that patients are the ones on the front lines of carcinoid - demanding treatment. My next ct scan is in a few weeks. I hope the Afinitor is working... it's a frustrating position to be in - for patients to know more than most doctors.
ReplyDeleteDear Marlena:
ReplyDeleteI just cam across your blog and have read a bit of it. I have an extensive blog, detailed and has a ton of links with studies and information on this monster and issues. Advise if you want to find an article and can not?
I did want to note about your disease and % for metastasis? A number of things that come out quickly that would be worrisome (and some good)
1) Your primary tumor was 6 cm in dimension. This is a large tumor and there is a risk of mets when a tumor has grown so large.
2) A more worrisome area are the lymph nodes, which were removed, with 2 nodes (out of six?) showing evidence of NET disease. This is very concerning as the lymph system is the "highway to the body" and tumor cells travel very quickly and insidiously. This would be the most concerning as you are already presenting advanced disease with local metastasis upon re section.
3) On the positive side, you found the tumor incidentally and your primary is in the appendix. Primary tumors in the appendix have been noted to be the most indolent tumors.
Pathology- one of the most important indicators of the aggressiveness of the disease is the mitosis rate or Ki index. I have not read the full report however, this is something you need to have, the Ki index? Its in the path report! If it is not listed, ask for a staining to be done SAP. You are looking for a Ki index of 0-2%, well differentiated (the most indolent, however still an issue).
Finally, you should undergo Octreoscans, fused with Ct scans every 4 months to start, and then extended. The first stage is to understand if the tumors are receptor positive, which hopefully you did this prior? The scan can "see" tumors before they grow if sensitive enough! Areas of concern is the liver as NETs tend to travel there and your mesentery area.
Finally, the "gold standard" for imaging is PetW gallium 68 which one can undergo in Europe. I am going to Germany for imaging and PRRT therapy (Lu177) for my very advanced disease. The imaging will identify mm lesions and is the BEST! Its not covered by insurance however, the cost is $3-4000 USD for PETwGA68, CT and blood kidney tests.
I am not sold on the blood tumor markers as I always tested normal even though I was covered with tumors. If you are taking sandostatin LAR for inhibition, the markers are sometimes false due to the medication. If you do one marker, I would focus on the Chrmgm Am but you must be sandostatin naive to get a good reading.
I wish you the best in the future and 'channeling Jackie o"....I just saw a video on John F K on HBO and see was on the documentary. I came from Cuba and so have a difference of opinion relative to JFK as I would probably still be in Cuba and living "la vida loca" in Havana is Nixon would have won in 1960!
Take care and please write me if you want info from my blog...see the links on the left side for plenty of data!
www.renalcarcinoid.com
Steve (RCG)
smm2367@gmail.com
Thank you so much Steve! I really appreciate your advice and insight. I'll be sure to check out your blog :)
ReplyDeleteMarlene...has alot of information (people sometimes comment on that but I tell them if you wanted less, than you would have a sinus infection now wouldn't you?!).
ReplyDeleteIn care you get lost write me (email on blog).
Here are some sample important entries you may have interest (as you are aware, a BLOG is not the right platform to post extensive medical data!)
http://www.renalcarcinoid.com/2009/11/utube-renal-carcinoid-channel-become.html
(Marlena- watch the Singapore conference video from Dr Richard Baum. It reviews carcinoid, imaging, PRRT and KI index, and other topics- it is in two sections..it's priceless!@ It saved my life as I am now going to Germany for treatment!
http://www.renalcarcinoid.com/2009/12/blog-information-directions-how-to-get.html
Another area is "how to get info from the many sources on the blog"!
http://www.renalcarcinoid.com/2010/05/signapore-conference-video-w-dr-baum.html
Above is the "One year from PRRT therapy and imaging".
Marlena- you need to investigate this option, esp. the imaging PET w GA 68 to understand what you status is...gold standard..NOW, while still riding horses and enjoy life! GET on top of this @#$% disease!
http://www.renalcarcinoid.com/search/label/PET%20w%2Fgallium%2068%20imaging
These are a few posts...
Please if interested in learning more, write me! I would be glad to share and exchange data.
I have been 10 years in this hell, 3 surgeries, 2 clinical trials, 4 countries, and now PRRT (lu177) in Europe. I have also seen a lot of the MD's in Carcinoid!
I have studied this disease and options in detail Marlena....there is not much out there for progressive advanced disease!
Please feel free to write me when you are ready (typically its when a patient is progressing and realizing therapies are limited in the USA.....you need to pray for indolent tumors, and many years of PFS!).
Quidate Amiga y aprenda todo que puedas de tu enfermeda! It means quality and life span!!!!! CHAO my NET friend! (btw, I did not like JFK...without him I would be drinking banana darquiris in Miramar Cuba right now!)
SMM
www.renalcarcinoid.com
marlena:
ReplyDeleteI got caught up on this question so here is a very good response from a MD I once saw in my "stay alive tour"...hopefully it reassures you, however, you still need to find the ki or mitosis rate. The blog entry is
http://www.renalcarcinoid.com/2009/06/carcinoid-tumors-great-article-from.html
Go to Appendiceal carcinoid tumors
Most appendiceal carcinoids are diagnosed incidentally during surgery. More than half of patients who have appendiceal carcinoids present with signs and symptoms that suggest acute appendicitis [19]. Appendiceal carcinoids are most frequently located at the tip of the appendix, although they can be located throughout the appendix [20]. The most common age at diagnosis is in the fourth or fifth decade [2]. The prognosis of appendiceal carcinoids is very good. The 5-year survival rate is 94% for local disease, 85% for regional metastasis, and 34% when distant metastases are present [2].
This is assuming "typical carcinoid". Also, regional is regional lymph nodes and distant is to an organ such as liver (this is why you need the sensitive scan now!).
Ok, you have the data...live, love laugh someone said one day I think! cya
Marlena, I am glad that I found your blog. I have been worrying about recurrence of my NET and i found you. I am quite a bit older than you and i have been trying to channel Jackie O since I first saw her image on the black and white tv when I was 10 years old. I had a neuroendocrine tumor surgically removed from my small intestine last Spring. It had spread to my lymph glands. It was the second, but unrelated,cancer that I was diagnosed with in 2011. I was treated for the first cancer with chemo and radiation. I am trying to be positive and not worry about recurrence. I have one child , still in college. Most days, I am able to trust that all is well. Tomorrow, I will attend my best friend's funeral. She battled cancer for 4 short months. It scares me. I pray that they find a cure soon. I was told that the chances of recurrence are low. They don't know what to do to prevent recurrence. I wonder what I can eat? Do you know any information about diet? I will check back with you.
ReplyDeleteHappy Thankgsgiving. I am so thankful to be here this year! You will be in my prayers, as will all cancer survivors. Mary
Hi Mary - I'm sorry to hear about your friend. I too just went to a friend's husband's funeral. He was 50 and died of a heart attack at the kitchen table - where she found him. So scary when you get a sudden dose of mortality... especially as a cancer survivor. The only thing I've heard re diet (other than healthy of course) is Black Raspberry Powder-- it's really expensive, and mainly people with bad symptoms use it... but there is some evidence it stops carcinoid tumor cell production - I've blogged on it so just put Black Raspberry in search bar... Bottom line is doctors don't know a lot about carcinoid so the patient advocacy groups are sometimes the best source for NEW information... I'll keep my ears open re: diet.
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Hi all.
ReplyDeleteI am looking for any one with similar situation.
I had limited right hemicolectomy surgery in the of last year 2012. Mu pathology report showed:
Well-defirentiated neuroendocrine ileum tumour, ki67 less 2%.no mitotic figure , 2/6 lymph nodes came back posative. In other words stage 3.
After surgery, I had gallum 68 pet scan, blood and urine collection that all came back negative. Iam 37 yrs old male and healthy. However, I am extremely worried about carcinoid reccurance. There is no day that passess which I don't stop and think. I would like to know anyone that is going similar situation.
Thanks
Hi there... I'm sorry to hear about your diagnosis .. It's doubly scary because there isn't a lot of info on noids. Good news is ileum carcinoid has a high surgical success rate. Further good news is carcinoid is slow growing ... So regular screening should largely prevent spread. The most impt thing is to get a MD that's a carcinoid expert. You may want to request an O-Scan (search for it on my blog) ... Also make sure you get 24-hr urine 5-HiAA test
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