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I do wonder if hormones play a role as well as other things. I know I saw a fertility specialist to try and preserve my fertility. He diagnosed me with PCOS which is hormone based as well.
Lainy, probably our environment is involved as well. Or the way we live. AND genetics, but probably a bad combination. I would guess female hormones play a part as well. Or testosterone somehow protective? Maybe someday we´ll know.
Go figure! Teddy’s parents, aunts and uncles had NO cancers but almost all 1st cousins have had some form. My parents had no illness of any kind and lived in to their 90’s. My sister had breast cancer and I had my own rare cancer with a GIST tumor 2 years ago. Again, go figure! A while back one of our members was told by his/her ONC that it is a toss of the dice. Perhaps it is.
You never know how strong you are until “strong” is the only choice you have!Janine, we heard the same thing from our surgeon. He told my wife… you have cancer because you picked up a genetic mutation. Where and how we will never find out.
Susie and Pam: OK, so I’m not the odd ball out. I feel a little better now (in an odd sort of way!)
I didn’t wear make up either and until the last year or so I hated sushi. I have several friends my age that love it though. I also never was a big drinker. I have been overweight for my entire life, so I don’t know if that has something to do with it. Definitely love food that isn’t entirely good for me too. My oncologist seems to think that I might just be the lucky owner of a genetic mutation that makes me prone to cancers. Yay…
Janine,
I never had liver issues, meaning no jaundice or abnormal LFT’s. Just a big tumor. And yes, sometimes I do treat it like it’s a patient I’m caring for and not myself. It is difficult because I work as a case manager now, but my clinical back round is in liver transplant/liver tumor. I’ve taken care of lots of CC patients, but they were never my age and I never thought about CC in much detail. I only had experience dealing with surgical patients, never dealing with the chemotherapy/radiation part. I figured, if they are older they get whipples, if they are younger they are males with PSC and get resections. Who knew there was so much more to it than that!
Best of luck to you. I enjoyed reading your blog, especially the part about what not to say to cancer patients. It’s so true.Best wishes!
SusieP.S. Pam, funny, when you said Happy Hanukah to our Jewish members….CC doesn’t seem to hit Jewish people.Must be the Jewish soul food!
The Whipple seems to have been going on a long time!!! FYIThis procedure was originally described by Alessandro Codivilla, an Italian surgeon, in 1898. The first resection for a periampullary cancer was performed by the German surgeon Walther Kausch in 1909 and described by Kausch in 1912.
It is often called the Whipple procedure, after the American surgeon Allen Whipple who devised an improved version of the surgery in 1935[2] and subsequently came up with multiple refinements to his technique.
Pam, thank you for the Chanukah wishes. The Festival of lights, not too much unlike all the Chirstmas lights outside except we use blue and white. We will celebrate it next week at my daughters’ where she makes the Latkes (potato pancakes) and I do the beef brisket. (Gavin loves when I post food)!
I just want to add to what you said about seizures. My son has Epilepsy and has been on Pheno. / Tegretol for 40 years, no stomach issues yet. CC has to be one of the biggest mysteries of life!
Have a beautiful Christmas with your lovely family!Lainy- I sit and try to think of what could have caused Lauren’s CC. She does wear make-up, but so do most women. As for sushi-Lauren would never touch the stuff. We live 1-2 miles from an old landfill. So I worried about that. It would have been more of a concern if we had well water like some houses in our allotment, but we have had city water from a nearby town ever since we’ve lived here (almost 16 years). Lauren had febrile seizures, seizures with fevers when she was small, and she took phenobarbitol for around 5 years. She always wonders if that has something to do with it. I don’t think we will ever know. Also, I would like to add a Happy Hanukkah to you and any other Jewish members.
Janine- Lauren only had pain in her upper right side and back. She also got full really fast. No jaundice, and her liver function test was only slightly elevated. We thought it was her gall bladder. Never heard of CC before this.
Her main tumor is the size of a cantelope!! You can’t tell from looking at her. Where is it hiding?Love to you both, -Pam
I’m trying my best to get more exercise. I lost a lot of tone and strength when this all started. I was in pain and just exhausted most of the time, probably because I could barely keep food down. I’m trying to get myself back to where I was and convince my oncologist that I can go back to my soccer team!
Hi Janine!
Also nurse
but 15 years older than you. I was diagnosed in April 2010 with a big tumor (like yours) and ten small ones (~1 cm) intrahepatic. Needless to say, inoperable.I found out because something was bothering me, and thinking it was gallstones I went to ER. Not the case.
I hadn´t lost weigth, I wasn´t tired and my liver wasn´t just normal – it was perfect.Today after 1,5 years treatment with chemo, and 5 chemoembolizations my bloodwork is affected, but because of treatment. No jaundice, however, no drains or stents.
AND – best of all – not sick!
I work part-time (ambulance, not always easy) I run 30-40 km/week, etc. I live a normal life, and NOBODY can tell (without knowing) that I have this kind of diagnosis.
I strongly believe in physical exercise, healthy food and everything that strengthens the healthy parts of the body.
I´m determined to stay healthy and beat this!!!Funny about nurses; I found out not long ago that a nurse I used to work with 11 years ago got the same diagnosis – two months before me! She was operated by “my” doctor and hasen´t had any recurrence. I´m one week older than her…
Stay strong and positive there is a way out of this!!
hugs
MariaJanine, Teddy’s CC never went to his liver. It was at first contained in his bile duct valve. When it returned it returned to where his duodenum used to be.
I so understand what you are saying about the Oncology floor. Teddy used to tell me that he could not get over the fact that other Cancer patients kept visiting him after his Whipple. He would say, “they are coming in with their IVs seeing how I was and here they were worse off than I was!” Typical Teddy!
As for so many younger women, I was sitting here and thinking why would there be such a difference and the only thing I could come up with was makeup. I know it sounds funny but really what else do women eat or do differently? I think they are probably more health food conscious. Escapes me, hope someone finds out more we can do for CC and soon! Be strong!
P.S. SUSHI? Even my teen Grandkids love it. More is being eaten now than ever before. It also seems to me that we have more patients from the East and West Coast. Just thinking.Susie: For me one of the hardest parts of being diagnosed was knowing. Most people fear the big C because of what they’ve heard. I work in a hospital where my unit often gets chemo patients (despite the fact we are down the hall from the oncology ward.) I did time working with cancer patients. I hadn’t “heard,” I saw first hand how horrible it was. I freaked out long before the doctor could finish telling me I needed an oncologist.
I don’t know about you, but I found it was easier to cope if I put nurse me first. I would talk about it clinically as if it wasn’t happening to me. But it’s worked the best for me as far as coping.
I would love to know if there are reasons why young women are getting this type of cancer more. I wonder if it’s at all linked to rising gallbladder issues in that same age group.
To all: I was wondering if anyone else didn’t have liver related symptoms. I honestly never jaundiced and my liver tests are absolutely fine. My oncologist believes it was a small bile duct that the cancer started in and despite the moster being the size of an orange, I have never had any issues with my liver. It is, however, around my left adrenal gland, in some of my lymph nodes and my lungs. My doctors believe it is inoperable ONLY because it is already in my lymph system; otherwise, they seemed to think we could possibly resect most of it out (because that doesn’t sound like a daunting task at all).
Anyway, I was just wondering if anyone else found that their livers weren’t really as big an issue. No stents or drains.
Hi Janine.
I am a 32 you female, also a nurse, diagnosed with intrahepatic CC in May 2011. I had abdominal pain after eating that sent me to the ER. I thought it was my gallbladder. They did an US and found spots on my liver. The spots turned out to be a large mass which I had removed in May. I went into surgery thinking it was an adenoma, a benign growth caused by birth control. After surgery, I was told it was cancer. I never got a biopsy before surgery, because my surgeon said the treatment plan is the same regardless if it’s benign or malignant, it needed out. I got 3 rounds of Gem/Cis. 6wks of chemo radiation with Xeloda. My last scan was questionable for mets. I see the oncologist today and will probably proceed with 3 more cycles of Gem/Cis. Good luck to you and keep us posted.
There seems to be a few of us younger girls on here that are nurses. I wonder if there is some sort of connection. Probably not, but I’m always looking for some reason why this cancer has been increasing in young girls.Best Wishes!
Susie
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