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Peritoneal Carcinomatosis~Helpful Info 4 "Blue24" & others who may have this diagnosis~lengthy but worth the read!

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

Hello “Blue24”

           Although you have directed your question to Alicia, if you click on the blue box on the left hand side of her post, you will see that she has only posted once.  “About Alicia_BO - Joined on Sunday, March 24 2013 - Last online - Thursday, April 04 2013”.  Sometimes people come on only once and never return.  However, they need to realize that most of us on here may not be able to answer them in a 24-hour period because many of us are fighting the same battles.  The day we read the post may not be the day that we are feeling our best.  I see she checked back in for the last time on April 4th of 2013.  So it may be that you can try to send her a private message via the e-mail system here on CSN, but I have a feeling you will not receive an answer.  It’s always best to read some of the more current postings regarding the questions you have.  Or at least check the date on the post.  So in this case Alicia has not posted anything on here in 3 yrs. And 7 months.  And don’t worry, you’re not the first person that didn’t realize that they should check the date that person last posted anything. 

             Okay now since I was diagnosed with Peritoneal Carcinomatosis in November of 2012 and am still alive, I am still posting.  And that would be my #1 thing to be thankful for this Thanksgiving 2016, that I am still alive.  Now you haven’t said exactly what the official diagnosis is for your husband, but Alicia spoke of her husband being diagnosed with “Peritoneal Carcinomatosis.”  Unfortunately, the cancer isn’t choosy!  It will take up residence in men as well as women, but is found mostly in women.    In either case, it is a rare cancer.  But when the diagnosis has “Carcinomatosis” on the end, it means that it is a Stage IV diagnosis.  Sometimes the Peritoneal Cancer can first occur in the abdomen, but seems that most times it probably spread from another major organ.

           In the case of my correspondence to “Swenzke” (see link http://csn.cancer.org/node/305907 ) you will notice that I mentioned a young man who was diagnosed with Peritoneal Carcinomatosis.  The original source of his cancer was his appendix that had ruptured.  You might want to check some of the links that relate to Peritoneal Cancer that are given below my name.  Most often we are dealing with women on this forum.  In my case, I am sharing my experience on both the “Ovarian, Peritoneal, and Esophageal” cancer links.  Most likely my cancer began in my ovaries, but now “it is what it is”.

             No matter whether the cancer is diagnosed in a man or a woman, it is treated the same way as if it were “ovarian cancer.”  Men can undergo “debulking” (Cytoreductive Surgery – CRS) the same as women. 

             May I suggest always one thing—that your husband have a SECOND OPINION?  Don’t be intimidated or afraid to ask for it, if you live in a country that allows a 2nd opinion.  I say that because in some cases were “National Health Care” is the only option, patients may be “assigned” a doctor after they have checked in at a specific clinic.  In one case, a lady did not have the choice to have a 2nd opinion, and a board will decide what her treatments will be.  So chalk up another thing for which I am thankful here in the United States—the availability of second opinions.  Sometimes a patient is too afraid to ask any questions of the medical team because they feel they might cause “hurt feelings.”  So whose feelings should take precedence, the doctor’s or your husband’s?  May I say that if my initial medical team became incensed at the suggestion of a 2nd opinion, that would be a clear signal for me to “move on.” 

           Then there’s always the lack of knowledge on our part when first we discover we have a certain type of cancer.  But you can move beyond that “intimidation factor” by reading from reputable medical facilities on the web.  I am a traditionalist, rather than a holistic, in my approach to my cancer.  Others incorporate both and are very happy with that approach.  I’m not here to argue that point of view.  We only have one body, and we must feel comfortable about how we approach our specific diagnosis and have implicit trust in those whom we choose. 

             So in addition to the letter I wrote to “Swenzke”, I have scanned the web specifically looking for “Peritoneal Cancer”.  Many times it isn’t even listed as a separate cancer, because most often it is “referenced in connection with Ovarian Cancer” since it is mostly diagnosed in women.  I can tell you that it is very serious, and no time should be wasted in knowing all you can about it, and finding a competent medical team who is known for their expertise in treating Ovarian and Peritoneal Cancers.    

             Being a caregiver is a difficult job.  When my husband was diagnosed in November of 2002 (Still a survivor of late Stage Esophageal cancer), the day he was diagnosed with cancer, I felt I was diagnosed as well.  I said, “When my husband has cancer, I have cancer.”  Just as in marriage, the two become one—so it is with you I am certain, and though you are now the caregiver, you feel like you have cancer.  You’re doing the right thing to do research on your own, and not just depend on the doctors to tell you “all they think you need to know.”    They are busy and will probably not tell you much more than you know to ask. 

             May God guide you in finding the best info and the best doctors.  I can only say, “I feel your pain and can relate both first as a caregiver, and now as a Stage IV Peritoneal Carcinomatosis cancer patient myself.  My husband and I have much to be “thankful” for as we celebrate another Thanksgiving “together” which we both never expected to see.  It is rare for an Esophageal Cancer patient, Stage III (T3N1M0) to survive 14 years.  It is extremely rare for me to survive 4 years.  It was just a couple of days before Thanksgiving in 2012 that I started right out with a Stage IV diagnosis of Peritoneal Carcinomatosis.  But on the positive side, I’m still in my right mind, and I am still surrounded with a loving family and friends who have bathed me in prayer.  And although it is a time of mixed emotions, and not what you hoped to be dealing with at this time of the year, please resist the temptation to fall into the “woe-is-me worry pit”.   Just throw your arms around your husband, let him know (and I’m sure you do) that you’re in this “together.” 

             May God’s presence give you peace as you tread these troubled waters.  He gives me spiritual strength to continue, even when my body is physically weak.  (And I can attest to being very physically weak since I am in the midst of a third series of chemo treatments of Carboplatin and Taxol every 3 weeks for a total of 6 treatments).    And all of those who may read this will say a hearty “AMEN” to that sister.  Hasn’t it been often said that for every “negative there is a positive?”  Believe it or not, the Lord has counteracted a lot of negatives in my life with a lot of positives.  Since He is no respecter of persons, He can do the same for you.  And even with my current diagnosis, my sense of purpose and reason for living has greatly increased.  I’m so much more appreciative of the “little things in life” that for years I just sorta’ assumed would always be there.  But there are seasons to life, and hopefully the older we get, the smarter and more compassionate we become.

           It wasn’t until recently that it occurred to me, as my husband was driving me to the doctor for an early appointment that I was almost blinded by the bright rays of the morning’s rising sun.  And I said to my husband, you know we take so many things for granted, don’t we?  How many days do we get up and appreciate the beauty of a sunrise in the East or a sunset in the West?  Well, isn’t the sun always going to be shining?  Well probably, but maybe not for me, so I should count it a blessing every day I see another sunrise.  These days I always try to find positive ways to counteract every negative thing presently (and there are many) with “positives” that are enduring and have ultimately made me a stronger person than I was before.  My trust in His omniscience and omnipotence has greatly increased.  May you find many positives, as will I, to be thankful for even though this is the last thing either of us would have selected for a “challenge!”  Take care and take charge!

 And an old song by Bing Crosby and the Andrews sisters just came to mind.  That lets you know that I’m 77 years and 9 months old.  I still like the older songs.  I can understand the lyrics!  Here is the link and I suggest you read all the lyrics.

  https://www.youtube.com/watch?v=5Qk9o_ZeR7s&list=RD5Qk9o_ZeR7s

 “YOU’VE GOT TO ACCENTUATE THE POSITIVE—ELIMINATE THE NEGATIVE—AND DON’T MESS WITH MR. INBETWEEN!” 

 God Bless you,

 Loretta

 Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

________________________________________________________________

           Here are several references that will give you a clearer understanding of this cancer.  The middle series are videos by my surgeons at the University of Pittsburgh Medical Center (Passavant Hospital).  Lastly, you will also find a 3-part video series by a patient who had Cytoreductive Surgery for her Ovarian cancer, and she briefly explains her HIPEC treatment.  If you study these references, you will be much better prepared for what may be “down the road” for your husband.   The first references are more “textual” in nature, but informative.  A couple of them are from the UK, but I like how they explain the treatment of Peritoneal Cancer.   

 1.      http://teachmeanatomy.info/abdomen/areas/peritoneum/

 “1 Structure of the Peritoneum

 

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2.  http://www.healthline.com/human-body-maps/abdomen

 

(My note:  Here is a wonderful educational 3-D view of the entire body makeup – organ by organ.  I chose the male anatomy and the abdominal area.  When you move your cursor around, the entire body organ can be viewed from a different angle.  So you will find this very informative for future reference when your doctor discusses different parts of the body.)

“In Depth: Abdomen

          The muscles of the abdomen protect vital organs underneath and provide structure for the spine. These muscles help the body bend at the waist.

          The major muscles of the abdomen include the rectus abdominis in front, the external obliques at the sides, and the latissimus dorsi muscles in the back.

          The major organs of the abdomen include the small intestine, large intestine, and stomach. Together, these three turn nutrients into usable energy, as well as help dispose of solid waste.

         Major organs that help filter contaminants out of the body are also in the abdominal region. These include the liver and kidneys

         Key bones in the abdominal area include the base of the ribcage and the lumbar spine in the lower back.

         Because of the important organs situated in the abdominal area, many health concerns stem from this area. Some include:

Digestive problems in the stomach or intestines

Peptic ulcers

  • Various cancers

  • Pulled or strained abdominal muscles

  • Cirrhosis of the liver

  • Colon cancer.”

  •  

    ___________________________________________________ 

  3.      http://news.cancerconnect.com/newly-diagnosed/

 

Newly Diagnosed Topics

 §  The Role of Caregivers

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4.   http://www.cancerresearchuk.org/about-cancer/type/rare-cancers/rare-cancers-name/primary-peritoneal-carcinoma

 “Primary peritoneal carcinoma

 This page tells you about primary peritoneal cancer. There is information about

   The peritoneum

 The peritoneum is a layer of thin tissue that lines the abdomen and covers all of the organs within it, such as the bowel and the liver. The peritoneum protects the organs and acts as a barrier to infection. It has 2 layers. One layer lines the abdominal wall and is called the parietal layer. The other layer covers the organs and is called the visceral layer.

 There is a small amount of fluid between the two layers, which separates them and allows them to slide over each other. This fluid allows us to move around without causing any friction on the layers…

    What is primary peritoneal cancer?

 Primary peritoneal cancer (PPC) is a rare cancer of the peritoneum. It is very similar to the most common type of ovarian cancer called epithelial cancer. This is because the lining of the abdomen and the surface of the ovary come from the same tissue when we develop from embryos in the womb. Doctors now think that most high grade serous cancers actually start in the far end of the fallopian tube rather than the surface of the ovary or peritoneum.

 Doctors stage cancers to help them decide the treatment that people need. Staging tells them about how big a cancer is and where it is in the body. The staging system for PPCs is the same as for ovarian cancers but there is no early stage. PPC is always either stage 3 or stage 4. This is an advanced cancer. PPC does sometimes affect the ovaries but to be a PPC it must only be on the surface of the ovary.

 PPC is a cancer that mainly affects women. There are no exact numbers for how many people get it in the UK. Research suggests that between 7 and 15 out of 100 women (7 to 15%) who have advanced ovarian cancer will actually have PPC.

 It is very rare in men. Most people are over the age of 60 when they are diagnosed.

 The causes of PPC are unknown. Most cancers are caused by a number of different factors working together. Research suggests that a very small number of PPCs may be linked to an inherited faulty gene. This is the same gene that increases the risk of ovarian cancer and breast cancer. 

 You can find out more about this gene, called the BRCA gene, on the ovarian cancer risks and causes page.

 Mesothelioma is another rare type of cancer that can develop in the peritoneum. We have separate information about mesothelioma in the cancer types section…”

 ____________________________________________________________________

 5.  http://www.medstarcancer.org/conditions/peritoneal-cancer/#q={}

   “Peritoneal surface malignancies are cancers that grow or spread along the peritoneal surfaces, the tissues inside the abdomen that line and protect your lungs, chest, and abdomen. Generally, the cancer originates inside the appendix, colon, or pancreas, and spreads into the rest of the abdomen…”

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6.     http://www.macmillan.org.uk/information-and-support/primary-peritoneal-cancer

 “Primary Peritoneal Cancer (PPC)

 Primary peritoneal cancer (PPC) is a rare cancer that starts in the layer of tissue called the peritoneum. The peritoneum lines the inside of the abdomen.

 The cause of PPC is unknown. PPC is more common in older people, and in women.

 Symptoms might not be obvious at first, but can include:

  •  losing your appetite - indigestion - feeling sick - weight gain - swelling or pain in the abdomen - breathlessness.
  • After seeing your GP, you may be referred to a specialist doctor (usually a gynaecologist). They will examine you to check for lumps or swellings. You may also have other tests such as a chest x-ray, blood tests, an ultrasound, CT or MRI scan or laparoscopy.

    In PPC the cancer is either stage 3 or 4, depending on its size, position or where it has spread.

    The main treatments for PPC are usually surgery, to remove as much of the cancer as possible, and chemotherapy. The aim is to control the cancer for as long as possible. Sometimes people have radiotherapy treatment.

  •  What is primary peritoneal cancer (PPC)?
  • The peritoneum

  • Causes of PPC

  • Symptoms

  • How PPC is diagnosed

  •  Staging PPC
  • Treating PPC

  • Clinical trials

  • Follow-up for PPC

  • Your feelings…”

  • _____________________________________________________________

 7.   https://www.youtube.com/watch?v=eiAu-LHQHoY

           This is a video by my surgeon, Dr. David Bartlett, who performed the Cytoreductive Surgery for me on July 1, 2013.  This last 24 minutes and will give you an idea of how HIPEC treatments are done, for whom and why.  It is a very “FRANK” statement, but it is so informative.  The University of Pittsburgh Medical Center, was where we went for my husband’s 2nd opinion.  When I had my initial diagnosis of Peritoneal Carcinomatosis in November of 2012, I went to UPMC for a 2nd opinion in 3 weeks. 

           He did not choose to perform the HIPEC treatment for me, although he spoke of that possibility prior to my going into surgery.  I trust his judgment as to why it was not performed on me.  This treatment is performed during the surgery but after all “non-essential” organs have been removed that they deem necessary.  High concentrations of chemo can be given directly into the abdominal cavity and not affect the entire body.  (Hypothermia kills cancer cells instantly.  The key is getting the highest concentration of heated chemotherapy possible. 

             In this January 2012 video Dr. Bartlett’s explains how HIPEC (Hyperthermic Intraperitoneal Chemo Perfusion) is administered starting around the 15:00 minute segment. 

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  8.   https://www.youtube.com/watch?v=ot3YAxpOLR0

 (This is a shorter video by my surgeon, Dr. David Bartlett)

 “Published on Apr 5, 2013 - David Bartlett, MD, vice chairman for surgical oncology and gastrointestinal services at UPMC, discusses HIPEC as an approach that may improve the long term survival of patients diagnosed with abdominal cancers when used in conjunction with other cancer therapies.”

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 9.  https://www.youtube.com/watch?v=GCABswECFYg

 (Note:  This is my surgeon who followed up with me all during my stay at Passavant Hospital, Pittsburgh, PA. – One of UPMC’s hospitals.  This is an 18:00 minute video.)

  “Published on Sep 17, 2012 - Dr. Steven Ahrendt discusses post-operative issues and follow up care”

______________________________________________________________________________

  10.  https://www.youtube.com/watch?v=I22QiuDh7Ck

 (This is a lady talking about her diagnosis and experience with HIPEC treatment.  It lasts approx. 8 minutes.)

 “Published on Jul 24, 2012 - In part 1 of this three-part series, the patient describes her type of cancer and treatments available to her from UT Medical Group, Inc. in Memphis, TN.”

_______________________________________________________________________________

 11.   https://www.youtube.com/watch?v=rjqsqUhdlUI

 (My Note--this is graphic so if you have a weak stomach, you might not be able to watch it.)

 “Published on Jul 24, 2012 - In part 2 of this three-part series, Dr. Gitonga Munene performs the HIPEC procedure and explains how this unique surgery is beneficial to treat intraperitoneal cancers.”

________________________________________________________________________________

 12.   https://www.youtube.com/watch?v=dg20oIsPvJc

 “Published on Jul 24, 2012 - In part 3 of this three-part series, the patient speaks at Survivor's Park in Memphis, TN, about her treatment and life after the care she received at UT Medical Group.”

 _____________________End of references_______________________________

Biltoon
Posts: 1
Joined: Aug 2017

Hi,

My mom idagonised with stage 4 peritoneal last thinksgiving and she had three round of Chemo, but Chemo did not help.  After research, we found a dr in San Diego, California who suggested operation and on march 24 she had the operation.  After the operation things were really good, but last week after 4 months the tumor regrow and now are faster than used to.  We don't know what do to and we called the dr. and he suggest Chemo.  But we know that the first Chemo did not work and we are afraid tthis time the chemo might work as well.   We would like to get feedback from folks who had the same peritoneal cancer stage 4.  Please help.

 

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