New to this journey

Ms. Vic

Greetings:  I feel like I am in the twilight zone, but glad to have found this support network.   Beginning last November after having the flu and then what was seemingly a bad reaction to anticiotics that resulted in stomach issues of diarrhea, nausea, vomitting, the symtpoms seemed to continue and appeared off and on.  At times I had stomach pain and such bad nausea that I had to call off work.  At some point, and it is now unclear, I noticed a mass or lump in my left lower abdominal area.  At first I kind of ignored it.    During this time, my appetite has been very poor, with bouts of nausea and inability to enjoy eating things I used to like.  Eating just became a necessity, with no enjoyment.  In late March to early April, I experienced another couple days of having to call out of work and realized I had to do something as my job was going to be in jeopardy.  I went to a FastMed and they referred me to a gastroenterologist.  I had colonoscopy and endoscopy on April 27, along with the gastro doc acknowledging that he felt the mass in my abdomen.  He said there was an inflammed area of the colon that he sent out for biopsy; the uppper GI revealed severe acid reflux but nothing further noted.    The doc said he still wanted me to schedule a CT scan, which I was able to do for today.  A few days ago, the gastro doc called to say cancerous cells had been found in the biopsy, but he felt they came from the mass in the abdoment pressing on the colon.  He believed it to be originating in the ovary.  This evening he called me after the CT scan as he is getting me set up for a referral to an oncologisot or a gyncelogical oncologist, wasn't sure which.  I told him from what I've read I would think the latter is best and he said it wasn't certain if the ovary was the primary site due to the cells being signet ring.  Has anyone here experienced that?  It is disturbing because it appears as though those cells mainly appear with a primary in the gastric region or stomach, het nothing was found on the endoscopy or colonoscopy other than what he felt was invasion of cells from the ovary.  I am confused and extremely upset; was not even able to work the end of this week.  I am not a young lady, though I have always felt like I am.  I am 69 years young and feel like I have a long way to go in enjoying life.  I feel as though I've been clubbed in the head!    I have been encouraged the last couple of days reading the stories and accounts from many ovarian cancer survivors; or those who are living with the disease for several years.  You are all an inspiration.  This idea about the signet cells has me more uposet at the moment.  I hope to have a good referral and appointment early next week.  Thank you for any insite and help you may provide!   

 

 

Vickie (used the name Ms. Vic because Vickie was taken)

LorettaMarshall

Vickie~anxiety is understood~hope U get right diagnosis soon

Dear Vickie:

 Your concerns are valid and justify being upset.  Shall I say welcome to the “Clubbed-in-the-head” sorority?  As for age, I know what you mean about being 69, but not really feeling like that many years have gone by. I’m well past 69.   My husband and I have raised 4 grandchildren.  They all say we don’t “act like we are 77 and 79.  They say we don’t act like “old” people.  I suppose that’s because they’ve “grown up along with us” and both they and we have grown older together.  The youngest is now 23 and the oldest 31.  Yipes, I really am older than I feel.  So until our bodies begin to break down, age is irrelevant, is it not? 

 So before I chat on, I will tell you that I am not personally familiar with Signet Ring Cell cancer of any type.  I’ve not been posting on this site very long so others that have been here longer will have a better recollection of other’s stories.

 Now Vickie, you are making every effort to find the source of your problems.  All the tests you’ve had are important.  And at this point nothing is confirmed, but the fact that your Gastroenterologist indicates that you do have “Signet ring cancerous cells” in your body.   Now understand that I’m not a doctor, so anything I say should be discussed with your doctor.  However, I have been reading about different types of cancer, since my husband was diagnosed with Esophageal Cancer, Stage III, back in 2002.  Thank God he had successful pre-op treatments of Carboplatin & 5-FU plus radiation, then a minimally invasive Esophagectomy at the University of Pittsburgh Medical Center.  So I know what you mean when you say you’ve got a whole lot more living to do.  All of a sudden seemingly your whole life flashes before your eyes, and you think, “Dear God…not cancer…not now…I’ve got so much more to do!” 

 In 2012, I was diagnosed with Peritoneal Carcinomatosis/Ovarian Cancer.  A CT scan first revealed multiple tumors in the peritoneal fluid in my abdomen.  I sought a SECOND OPINION @ UPMC, since my husband had been treated there previously.  A PET/CT scan and exploratory surgery revealed that the ovaries were cancerous as well.  So regarding treatment, it didn’t matter if the cancer had spread from my ovaries to my abdomen, or the other way round.  It was in the Peritoneal fluid as well and was not just confined to my ovaries.  So my initial treatments were Carboplatin/Taxol, and then Cytoreductive surgery in 2013.  Enough about me though.

 Your gastroenterologist says he thinks the cancerous cells are coming from the mass in your abdomen.  He stated that he thought it was coming from the ovaries, but he wasn't certain if the ovary was the primary site due to the cells being signet ring. From what I have gleaned about Signet cell cancer, I can understand why he isn’t certain of the origin.  In an effort to help you learn more about “Signet Cell Cancer” I’ve been doing a bit of research.  I will put one reference below my signature for you to read.  It is from the UK, but I’ve been referencing this site for years.  It is a reputable source of information, and written in a “user-friendly” matter. 

 Stating from the *article below:  “…Cancers are named after the body organ they grow in, as well as the type of cell. So a signet cell cancer of the glandular epithelial cells lining the stomach would be signet cell stomach cancer. And doctors will treat it as a stomach cancer. If the cells were in the bowel, then it would be a bowel cancer and treated as such…Under a microscope the cells look like signet rings and so they are known as signet cells or signet ring cells…”

 So Vickie, the more I read, I am seeing “signet ring cancer cells” are associated with different organs, such as the stomach, colon, cervix, breast carcinoma, and searches relate to Primary Signet Ring Cell Mucinous Ovarian Carcinoma as well.  So I understand that he is trying to decide whether to refer you to an oncologist or a gynecologic oncologist.  If it is related to the stomach and gastric region, he would want you to see an oncologist.  On the other hand, if it relates to the ovaries, then a gynecologic oncologist would be the one to see.  Either one will have to do more extensive testing to determine exactly what type of cancer is present. Either way, I would want a SECOND opinion.  So if I were you, I would ask for copies of all my tests, and copies of discs of any CT scans, etc. at the time of testing.  It would save having to go back and request all those kinds of records.  It is good to keep in your own personal file, even if you don’t seek a second opinion.  But I would highly recommend one.  It will either confirm the original diagnosis, or perhaps order more testing, and then suggest best way forward.

 Vickie, I understand completely your not knowing which way to turn.  I would love to be able to help you, but this is not anything I am personally familiar with.  Others here will probably be able to offer more answers.  However, I will pray that the Gastroenterologist will make the right decision, and that God will give you the inner strength to persevere in all the days to follow. 

 Prayerfully Loretta

 Peritoneal Carcinomatosis/Ovarian Cancer Stage IV~first diagnosed in November of 2012.

 *http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/what-is-a-signet-cell-cancer

 “Signet cell cancer - This page is about signet cell cancer. You can find information about

 What signet cells are…….What signet cell cancer is

• What signet cells are

  Our body is made up of billions of different types of cells that can only be seen under a microscope. Doctors group these cells according to the job they do or the type of body tissue they make up. Epithelial tissue is basically skin tissue, covering and lining the body both inside and out. Signet cells are a type of epithelial cell called glandular cells.

   What signet cell cancer is

  Signet cell cancer is also called signet ring cell cancer. Signet cell cancer is a rare type of cancer found most often in the glandular cells lining the stomach. But it can also develop in the bowel, breast, pancreas, bladder, prostate or lung. Under a microscope the cells look like signet rings and so they are known as signet cells or signet ring cells.

  Cancers are named after the body organ they grow in, as well as the type of cell. So a signet cell cancer of the glandular epithelial cells lining the stomach would be signet cell stomach cancer. And doctors will treat it as a stomach cancer. If the cells were in the bowel, then it would be a bowel cancer and treated as such.

So if you have a signet cell cancer, you need information about where in your body the cancer started. There is a list of cancer types on this website, where you can choose the right one for you.”

Ms. Vic

Loretta, you are a wealth of knowledge in so many ways; you certainly always are on the right track to finding the answers.  My confusion is that the gastro doc says the cells definitely are not originating in the colon but came from an inflammed area where "something" seems to be pressing on the colon.  He said they infiltrated the colon at that point.  I figured that was the mass in my abdomen, pressing from the other side.  Also with having the endoscopy/upper GI, wouldn't that reveal something suspicious?  He even mentioned on the phone yesterday something about originiating in the kidney.  He is talking to doctors at Wake Forest/Baptist, here in NC, which is a top medical facility.  I had my heart set on going to Duke Cancer Center, but since he is affiliated with oncologists at Baptist, I will take that as first way in.  As you said, I will get all of my records and then possibly go for another opinion at Duke.  

This is off topic, but someoe wrote about  CTCA on one of these boards, much earlier it was.  Interesting because all of my life I had always said if I ever need to seek treatment for the Evil C, it will definitely be at CTCA.  In fact, I tried to get other friends of mine to consider that on various occasions.  Anyway, I got the call from the gastro doc the other day as I was leaving work in Raleigh, NC and about to start my drive back to Greensboro (about 90 miles).  They talked for about ten minutes until it came to the insurance and then said they don't take that and couldn't help.  This is the same complaint I saw from anohter gentleman on these boards whose wife had OC and eventually died since she was not able to get the treatment that may have helped at CTCA..  I can't believe how they put forth this show of caring so much and treating the "individual" not the disease, and on and on, and then reject people.  I guess I am really better off for not being able to go there.  But I could have gone to the one in Chicago, as that is my home, and visit friends and family at the same time.  That wasn't really my motivation, I truly always thought highly of them.  My husband told me though that he had always wondered why I thought so highly of them, that he always felt they were out for the money and that's it.  Oh, well, I've wandered.  

Loretta, you have been thru a great deal in the last few years.  You are an amazing woman!!!!  And you certainly don't look old in your photos so I can see why the kids and grandkids don't think of you as old.  I have so much admiration for people like you who are really able to make the very best of the sitaution and move on in as normal fashion as possible.  I was so "out of my skin" this a.m. with anxiety, I took an Ativan and I feel a little calmer and I honestly hope that if I don't have appointments set up next week, I can go to work.  I am a contract court reporter and have a busy schedule much of the time.  It is difficult if a reporter has to call off at the last minute.  I cover only SS Disability hearings.  It is a job I've had for several years, after being laid for from my last job, and I immensely enjoy this job.  It is flexible, interesting and the money isn't bad.  I work in various offices within an hour to two hours from home.  

I hope to eventually hear from others here.  Seems that things are a bit quiet.  But reading many of the older posts from people who are five years past diagnosis is encouraging.  Again I'll say that seeing the strength of most of the ladies here is inspirational beyond words and I surely hope it will rub off on me; maybe after the initial shock wears off.  

Hugs,

Vickie 

 

LorettaMarshall

Vicke~spent a long time w/detailed info&site kicked it out!:(

Hello again Vickie,

Nothing like spending a long time writing info that you need, and the old familiar "SECURITY ERROR" pops on the screen and won't let me transmit it.  It seems that anytime I have a web link address in it, that it throws the whole letter OUT.  I have complained and sometimes the letters go through, and the next time they don't. 

You didn't miss anything by not being able to go to CTCA.  They're good on advertising, but we had a previous experience with a veteran that wanted to go there for Esophageal Cancer.  He was turned down, they didn't accept his insurance either.  I haven't found them to be any better than other leading medical hospitals.  DUKE is great, and I suggest you plan on gathering all info and schedule a 2nd opinion there asap, just to be certain that your diagnosis and treatment plan is the best one. 

Will try again tomorrow to send you the info.  Take charge and don't let this get the best of you, anxiety filled, though it is.  One test at a time, one step at a time, but quickly, so you can know what you're really dealing with.

Love & prayers,

Loretta

 

LorettaMarshall

Good morning Vickie - Sunday May 8th - It's MOTHER'S DAY!

Dear Vickie:

Tried again this morning to send a message without any web link addresses and it still wouldn't transmit my letter.  I sent the site another message about the "their error" problem.  Meanwhile, send me a private message with your regular e-mail on it, and I will send it that way if you wish.  We don't give out our private e-mail addresses out here "in public".  Too many kooks lurking around these days you know.

Loretta

Ms. Vic

LorettaMarshall said:

Good morning Vickie - Sunday May 8th - It's MOTHER'S DAY!

Dear Vickie:

Tried again this morning to send a message without any web link addresses and it still wouldn't transmit my letter.  I sent the site another message about the "their error" problem.  Meanwhile, send me a private message with your regular e-mail on it, and I will send it that way if you wish.  We don't give out our private e-mail addresses out here "in public".  Too many kooks lurking around these days you know.

Loretta

Loretta, not sure how to send

Loretta, not sure how to send you a private message.  Can you give me some  insight.  LOL.  Usually I am fairly computer literate,  but this site has been a l ittle difficult to navifate.  I understand abo0u the kooks!  Plenty of them around.