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how long from primary to stage 4

jjody
Posts: 2
Joined: Mar 2015

hi my mam was diagnosed with cancer of the peritoneam 3 weeks ago , after all this time all we have been told is what was on the CT scan , were still waiting on a biopsy to be taken , my family and i are going insane waiting for the oncology team to take a biopsy ,

my question is how long does she have to go from primary to later stage while we are waiting on the oncology team to get there finger out , any experienced people please share

seatown's picture
seatown
Posts: 262
Joined: Sep 2012

"primary" doesn't have to with the staging of your mom's cancer, as you probably know by now. Instead, "primary" refers to the fact that the peritoneum is the primary location of the cancer. As I understand it, the peritoneum can also be secondarily involved in cancer of other abdominal organs--liver, adrenal glands, etc. As to the staging--whether I, II, III, IV, or some stage in between--as I understand, sometimes that can only be deternined after surgery. Sorry to hear of your mom's diagnosis, & good luck to you all.

Poemeg's picture
Poemeg
Posts: 1
Joined: Apr 2015

i have been at Stage 4 for >12 years so do not despair just yet. Primary Peritoneal Cancer is treated pretty much the same as Ovarian and chemo did the trick although it took 2 years. I was relatively stable for 10 years and have only now required treatment again. I would be happy to discuss my history with you or your mom if you have questions of a non-technical nature. Otherwise, the doctor knows best. 

Christi J
Posts: 3
Joined: Apr 2015

It is refreshing to read your post Poemeg.  My 65 year old very healthy mom was diganosed about 6 weeks ago with Ovarian or Peritoneal Cancer.  She is staged at 3c with extensive tumor burden in the adbomen.  Her Dr wanted to do chemo first to try and shrink it all up and then do surgery and follow up with more chemo.  She has tolerated the chemo great and just had her second treatment yesterday.  Her CA 125 dropped from 790 to 370 after the first chemo which I think is good?? It is so hard to not know exactly what her diagnosis is until they complete surgery but her doctor says the treatment is exactly the same betweeen ovarian and peritineal and he preferred to start quickly instead of getting her in to surgery and realize he couldn't complete it and all that time would have been lost. We feel good about her treatment so far but it is so discouraging to google peritinal cancer and see the icky statistics.  Just wanted to say I am happy to hear about you being such a long term survivor...it gives me lots of hope!!!

Lou78
Posts: 2
Joined: Jul 2015

Hi, after much internet searching I found this post and felt I must get in touch. My mum (57) has recently had a diagnosis of primary peritoneal following CT scan (biopsy not till next week) but doc says 90% sure that is what it is. No specific symptoms, otherwise fit and healthy so saying it is a shock is an understatement. Can I please ask what your experience has been; what treatment you have had etc. 

myljon3@yahoo.com's picture
myljon3@yahoo.com
Posts: 9
Joined: Oct 2015

Hi, I just found this site and read your post.  I see that it was written in July and it is now October.  Please, read my blog if you still search this site.  I would love to know how your mom is doing and wanted to tell you that she is following me in a year and a half long journey and I am now doing well.  I went to M.D. Anderson Hospital in Houston, Texas.  I had chemo with their protocol in Atlanta which is closer to where I live.  Then, back to Houston for major surgery. Then, home for Chemo again.  If you reply to this, I will know you are still intersted in the treatments and will be glad to talk with you more.  It is a rocky road but with a good attitude and loving care, we get through it.  Will be glad to answer any questions for you about my journey.  Hope things are going as well as can be expected for your mom.

laurpkny
Posts: 2
Joined: May 2016

Hi Poemeg, Just wondering if you are still active on this site.  I am recently diagnosed with PPC and would love to talk with you.

Let me know.  Thanks,

snajada2002
Posts: 5
Joined: Apr 2017

Hi : I hope the best for you...My mother was diagnosed with Primary Peritoneal  Cancer in July 2016..She took chemo(4 cycles) , then did surgery (then chemo again for another 3 cycles)--Her  CA 125 was normal ( 20 )--We were very happy..She stoyop chemo for a couple of moths, but then  CA125  went up to 80, and we were nervous..She just started a different drug( Doxil) last week  and I hope the best for my mother to recover...If any one has any experince with this type of cancer (Primary Peritoneal or Ovarian) , please share the treatment plan(s) you had from your experience or anything you like to share ...I wish the best for all of you...Thanks alot!!

Mike

myljon3@yahoo.com's picture
myljon3@yahoo.com
Posts: 9
Joined: Oct 2015

Primary means that it is the probably the beginning place for the cancer.  I was diagnosed with stage 4 about 1 and a half years ago.  My CA125 was almost 4,000 which is unheard of.  I went to M.D. Anderson in Houston, Texas.  I became a patient of Dr. Melissa Meyer.  She ordered chemo...Carboplatin and Taxol.   I took that for about 9 weeks in Atlanta which is closer to where I live.  I then, returned to Houston and she did surgery, removing everything she possibly could and then I had another 9 weeks of chemo.  My body responded well to the chemo and am now in remission for 8 months.  I feel wonderful and so grateful to be alive.  Be patient, but keep on top of things.  God is good.  Pray for a remission and do whatever you can to keep your loved one happy and positive. That is part of the treatment.  Hope this helped.  If, not.  Write back and I will try to answer any questions that I can. 
God Bless you and your loved one.

Myl.

P.S.  my CA125 at this time is 8.0  :)  God is good.

 

laurpkny
Posts: 2
Joined: May 2016

Hi Myl, I was just wondering if you were still active on this site.  I am newly diagnosed with PPC and would love to talk to you.

Thanks

trinity527
Posts: 4
Joined: Jun 2016

hi

i had to create a new account

everything on trinity376 has been blocked so i wanted to know if you can resend your last message so i can help answer questions and tell you more about my story.

 

thanks

 

snajada2002
Posts: 5
Joined: Apr 2017

I am so glad for you...God bless

Mike

rdy2rtr2
Posts: 2
Joined: May 2010

I was diagnosed with Primary Peritoneal cancer on May 31, 2016.  I started having back pains and lower abdominal pains several months ago.  My family doctor requested a CT scan.  The scan showed "seeding" in the omentum.  I had never heard of seeding or the omentum.  I had a biopsy 3 days later and a PET scan two days after that.  The PET scan showed cancer in my bladder, liver, uterus, omentum and peritoneum.  The scans did not show cancer/tumors on ovaries.  I read today that women with no ovaries can get this disease.  I had breast cancer in 2009 and have been in remission since 2010.  I found a wonderful booklet, "Understanding Primary Peritoneal Cancer" online; it is very informative.  Based on the stage of my disease I probably had symptoms for some time.  I am telling all of my female family and friends to pay attention to symptoms like back aches that don't go away, stomach pains, bloating, feelings of nausea, etc.  I am glad to have found this forum.  I am certain I will visit often as I complete my treatment.  Let's face it, family and friends are wonderful but sometimes you need the understanding of folks who are having your same experiences. Also, what is a normal CA 125 number?

snajada2002
Posts: 5
Joined: Apr 2017

From what I read, a normal CA 125 if it is less than 35.

I wish you the best.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2613
Joined: Mar 2013

rdy2rtr2, please don't be hard on yourself re: having symptoms and not recognizing them.  Unfortunately, as with some of the other cancers, things that we read about later as 'signs' are easily considered to be something else.  But I applaud your wanting to tell as many women friends about what warning signs of problems might be. 

I have attached a link that explains what the CA125 is and hope you find this helpful. 

http://www.foundationforwomenscancer.org/wp-content/uploads/Understanding-CA125-Levels-2015.pdf

The peritoneal board can be a little quiet sometime.  

gunnerbean2
Posts: 1
Joined: Nov 2016

Hello, My 52 year old husband just got a diagnosis of gastric adenocarcinoma mestatic and pertitonel above the liver by the VA in Nashville .  He first thought he had a hernia but after a pet scan, CT scan and diagnostic laprascopy this was the final diagnosis .  The cancer is in the upper bulk of his stomach leading into his esophagus and is in one lymph node .  The only thing they are doing is chemo. We start Oxaliplatin tomorrow and we will be sent home with a 48 hour pump with Fluorouracil. They told us there is no cure and surgery would not be an option. I have researching everywhere and I stumbled upon this site. Any information would be greatly appreciated .  Once he gets where he can tolerate the trip we are going for a second opinion at the VA in Tuscaloosa , Al. It's rated the #1 VA hospital in the US. I just feel like the VA in Nashville who works with Vanderbilt is really trying their best to help. I've read of many different kinds of chemo and available surgeries out there but the doctors there say that they don't provide those services there. I contacted The Center Cancers of America and you pretty much have to be a billionaire to go there. It's sad to know that a human life depends on a dollar. My husband was in the Marines for 6 years and fought in the Gulf War. We have a 23 year old daughter who has given us a beautiful 2 year old grand baby and a 13 year old son. I'm reaching out to anyone for help, advice or opinions . I just want him to be able to beat this!! I just know there has to be more options out there! Thank you in advance for any helpful tips that anyone may have.

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

 Hello Gunnerbean2 – Please see my separate answer to you at this link. 

                         http://csn.cancer.org/node/306638

I saw your letter earlier this morning, and it has taken me quite some time to compile info that is related to “Gastric Cancer”.  I post on the Esophageal Cancer link as well because my husband is a miracle.  He is a 14-yr. survivor of Esophageal Cancer, Stage III.  Your husband’s cancer is in the same vicinity as my husband’s was.  My husband’s cancer was called Adenocarcinoma at the Gastro-esophageal (GE) junction.  When you look at a map of the body, you see that the stomach and Esophagus meet at this point.  Therefore, since this particular link, Peritoneal Cancer, is not very active, I doubt that you will get an answer from anyone else here.  Now it is true that the stomach is located within the Peritoneum, but you would be better served to be researching Gastric cancer, I do believe. 

             So check out my answer to you on a separate link, and answer on that link if you have other questions.  By all means, have a second opinion ASAP.  When it comes to cancer, “Two heads really are better than one.”  Also, I had a talk with Cancer Treatment Centers of America, and they gave me a plausible reason as to why your husband was not able to go there for treatment.  So try to carve out a long period of time to read all that I’ve written.  You will not be able to sift through all of it in one day.  While the terms, etc., that I have referenced in my letter are familiar to me, it will be “new” for you.  So please don’t feel overwhelmed.  I didn’t even know how to spell Esophageal when my husband was first diagnosed, but you can believe I know how to spell it now.  And through reputable, reliable information from the web from ONLY good sources, I’ve been able to put my mind at ease as to what my husband’s cancer is all about.  Anytime we can help someone else along the way, we feel we have “done a good deed.”  On the EC site I liked to say that my husband was “one beggar telling another beggar where to find a piece of bread.”  So the “bread” I’ve shared with you today will be more than enough to last through Thanksgiving.

 God bless you, your husband and all your family,

 Loretta

 Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

 P.S.  I note that there is a stomach cancer forum link here as well, so you might want to check there.  Esophageal Cancer is my "specialty" other than Ovarian and Peritoneal Cancers.  So perhaps between what I have shared and the info on the Stomach cancer link, you might find more help.  I certainly hope so.  In any event, even if surgery were to be a real possibility after all, studies show that those patients who have neo-adjuvant (pre-op) chemo/radiation fare better in surgeries.  The radiation can shrink the tumor and the chemo circulates throughout the entire body in search of cancer cells.  But don't give up with the first set of doctors, be sure to schedule a 2nd opinion asap.  This will give you the best assurance that all doctors agree on the diagnosis, and that you've explored all the possibilities. 

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