Peritoneal Carcinomatosis~Helpful Info 4 "Blue24" & others who may have this diagnosis~lengthy but w

LorettaMarshall
LorettaMarshall Member Posts: 662 Member
edited November 2016 in Peritoneal Cancer #1

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

Comments

  • Biltoon
    Biltoon Member Posts: 1
    #2
    peritoneal cancer

    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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