Recently diagnosed

bobbyandzippy
bobbyandzippy Member Posts: 3
in Peritoneal Cancer #1

I was diagnosed many weeks ago with pertioneal cancer.  I am finally having surgery this Monday, 9/14/20 at Stanford Hospital.  The stage/severity, etc. will be known thereafter.

I am writing this to express my appreciation for this site and specifically this "board”.   I know so little of what to expect and have been tormenting myself by surfing the internet and scaring the heck out of myself.  I came across the link for this site and signed up ... so glad I did. Though many posts I have read are very old, they have nonetheless given me great insight and hope.  There are so many stories that make it clear that there are no concrete answers... we are all different AND there is always hope.  I am staying OFF the internet and if I seek answers, I will ask my Doctors and seek advice from this network. 

Thanks in advance, Joan

Comments

  • ppurdin
    ppurdin Member Posts: 1,181 Member
    #2
    Dignoses

    So sorry your going thru this.I just been diagnosed also.No on

    e has answered me eaither.Mmaybe we can help each other till someone eles joins in.

  • bobbyandzippy
    bobbyandzippy Member Posts: 3
    edited September 2020 #3
    ppurdin said:

    Dignoses

    So sorry your going thru this.I just been diagnosed also.No on

    e has answered me eaither.Mmaybe we can help each other till someone eles joins in.

    Hi

    Your pup is adorable.  My belvoed is a huge (very old, very large) German Shepherd.  My "name", Bobby and Zippy is actually the names of two beloved dogs who have crossed the Rainbow Bridge. 

    I had surgery last Monday.  I have gotten no pathology reports yet.  I see from my on-line hospital account that results were entered on Friday evening but of course I can't see them.  I hope I will receive a call today.  There is no question that there is a maglignancy, the question is if there has been significant spread.  The waiting is so difficult. 

    Thanks for reaching out.  I'll keep you posted, please do the same.  

    All the best, Joan

     

  • obterry
    obterry Member Posts: 1
    edited October 2020 #4
    I first diagnosed with

    I first diagnosed with Primary Peritoneal cancer several months ago.  After many tests and several biopsies, it was recently confirmed and I had my first chemo treatment two days ago.  So far so good.  I'm glad to have found this message board.  Good luck to you.  It is pretty scary when you first learn.

  • Urnmywy
    Urnmywy Member Posts: 25 Member
    edited October 2020 #5
    Howdy

    I too have this, surgery has been 7 weeks ago, I have recieved 3 chemo treatments, so far so good, just some nauseua day 3.  Light shedding of hair so far. Even tho I've seen my surgeion and oncologist, neither have given me a stage or phase. They say it's to hard to tell with this type. I hope you get some answers. surgery recovery is slow.....stay on the couch and rest, and walk. That helped me the most. I want to be more active but the chemo makes me so tired. 

  • Urnmywy
    Urnmywy Member Posts: 25 Member
    edited October 2020 #6
    ppurdin said:

    Dignoses

    So sorry your going thru this.I just been diagnosed also.No on

    e has answered me eaither.Mmaybe we can help each other till someone eles joins in.

    surgery

    How are you feeling? 

  • Paulabarnes
    Paulabarnes Member Posts: 1
    edited October 2020 #7
    Ditto

    I also have peritoneal ca. Started at ovarian. 
    how is this treated for you guys? My dr won't do surgery 

  • Urnmywy
    Urnmywy Member Posts: 25 Member
    edited October 2020 #8
    Paulabarnes said:

    Ditto

    I also have peritoneal ca. Started at ovarian. 
    how is this treated for you guys? My dr won't do surgery 

    treatment

    my treatment is carboplatin once a month, then taxol 3 x's a month. one week off, then start over, 6 months total.  So far so good, mostly tired for a couple days then good as new. I'm just starting to shed some hair on my head but no where else. I did have a mass removed, and after that I've had 2 scans and nothing showing, so I wonder why I'm having chemo......BUT.....their could be a microscopic cell that was missed and could grow, since what I have was deemed very aggresive. Hope to talk to you soon..Jul

  • Chuck Z
    Chuck Z Member Posts: 22
    edited October 2020 #9
    Urnmywy said:

    treatment

    my treatment is carboplatin once a month, then taxol 3 x's a month. one week off, then start over, 6 months total.  So far so good, mostly tired for a couple days then good as new. I'm just starting to shed some hair on my head but no where else. I did have a mass removed, and after that I've had 2 scans and nothing showing, so I wonder why I'm having chemo......BUT.....their could be a microscopic cell that was missed and could grow, since what I have was deemed very aggresive. Hope to talk to you soon..Jul

    Microscopic Cells

    Urnmywy

    That's why with Ovarian and PPC they use the term NED and not Remission. There will always be cells floating through your system that will not be picked up on any scan or CA-125 blood test. That's why you must always stay vigilant when it comes to fighting this cancer. My late wife was NED for almost five years before it returned.

  • Urnmywy
    Urnmywy Member Posts: 25 Member
    edited October 2020 #10
    Chuck Z said:

    Microscopic Cells

    Urnmywy

    That's why with Ovarian and PPC they use the term NED and not Remission. There will always be cells floating through your system that will not be picked up on any scan or CA-125 blood test. That's why you must always stay vigilant when it comes to fighting this cancer. My late wife was NED for almost five years before it returned.

    Thank you —

    Did the same cancer come back at 5 years? I'm curious if so , did your wife do any holistic remedies to help along? Thanks

  • Chuck Z
    Chuck Z Member Posts: 22
    edited November 2020 #11
    Urnmywy said:

    Thank you —

    Did the same cancer come back at 5 years? I'm curious if so , did your wife do any holistic remedies to help along? Thanks

    Yes her Ovarian cancer did return. She was first diagnosed in April of 2012 and stayed NED until January of 2018. She also battled TNBC twice (2014 and in 2018) also. But what killed her in the end was AML that was caused by all the Carboplatinum that she  over the years. It had damaged her DNA. She did not beilive in holistic medicine. As far as she was concerned it was just voodoo medicine With no clinical trials to backup their claims. FYI, my wife was also BRACA-2 postive.

     

  • Urnmywy
    Urnmywy Member Posts: 25 Member
    edited November 2020 #12
    Chuck Z said:

    Yes her Ovarian cancer did return. She was first diagnosed in April of 2012 and stayed NED until January of 2018. She also battled TNBC twice (2014 and in 2018) also. But what killed her in the end was AML that was caused by all the Carboplatinum that she  over the years. It had damaged her DNA. She did not beilive in holistic medicine. As far as she was concerned it was just voodoo medicine With no clinical trials to backup their claims. FYI, my wife was also BRACA-2 postive.

     

    Thank you

    So sorry for your loss, I'm positive my green diet & vitamins & tinctures are helping. I wish more people would try it. Sounds like she had a lot going on. Thank you for the response. 

  • ppurdin
    ppurdin Member Posts: 1,181 Member
    edited December 2020 #13
    Paulabarnes said:

    Ditto

    I also have peritoneal ca. Started at ovarian. 
    how is this treated for you guys? My dr won't do surgery 

    Hi

    Sounds like we are in same boat.Dr. Won't do surgery.I have had two many.How are you doing?

  • Diane The Fighter
    Diane The Fighter Member Posts: 15
    edited January 2021 #14
    Hi Guys... I have a question for you all

    My question is do you all have the Peritoneal cancer in the fluid and tissue or just in the tissue or just in the fluid?  Sorry but I am new to all of this as well AND was 1st diagnosed with Adenocarinoma of the endometrial lining grade 3 and also Serous Cancer in a solid tumor within the uterus also a grade 3. I had the surgery that removed everything and lymph nodes and linigs samples etc all was celar except the fluid of my Peritoneal was cancer positive. I opted to not do the 25 radiation treatment and additional 3 rounds of chemo and am going all natural treatments. My Oncologist said 4 months to a year tops without HIS treatment but I heard that alone is a death sentence so I feel better going to alternative options and feel hopeful with several options available.

    Sorry for the error in the above showing it to be a link I am not retypying all that LOL

    God Bless ---Let me know how you are all doing and if the positive is as asked above

    Take care
     



  • Urnmywy
    Urnmywy Member Posts: 25 Member
    edited January 2021 #15
    Diane The Fighter said:

    Hi Guys... I have a question for you all

    My question is do you all have the Peritoneal cancer in the fluid and tissue or just in the tissue or just in the fluid?  Sorry but I am new to all of this as well AND was 1st diagnosed with Adenocarinoma of the endometrial lining grade 3 and also Serous Cancer in a solid tumor within the uterus also a grade 3. I had the surgery that removed everything and lymph nodes and linigs samples etc all was celar except the fluid of my Peritoneal was cancer positive. I opted to not do the 25 radiation treatment and additional 3 rounds of chemo and am going all natural treatments. My Oncologist said 4 months to a year tops without HIS treatment but I heard that alone is a death sentence so I feel better going to alternative options and feel hopeful with several options available.

    Sorry for the error in the above showing it to be a link I am not retypying all that LOL

    God Bless ---Let me know how you are all doing and if the positive is as asked above

    Take care
     



    Hi there

    Peritoneal high-grade serous carcinoma Is my diagnosis, I never got a grade or stage , doc said to hard to tell. My surgery involved taking to tumor out that had attached to overie & part of colon, so both were removed. I'm am doing both , poison chemo & alternative methods. Which I believe is helping me survive. besides juicing w/ a cold press juicer, I use supplements, infared sauna, yoga, & meditation. What natural things are you doing? 

  • lisom
    lisom Member Posts: 2 Member
    edited February 2021 #16
    Urnmywy said:

    Hi there

    Peritoneal high-grade serous carcinoma Is my diagnosis, I never got a grade or stage , doc said to hard to tell. My surgery involved taking to tumor out that had attached to overie & part of colon, so both were removed. I'm am doing both , poison chemo & alternative methods. Which I believe is helping me survive. besides juicing w/ a cold press juicer, I use supplements, infared sauna, yoga, & meditation. What natural things are you doing? 

    High-Grade Serous peritoneal Carcinoma

    Dear Ummywy,

    I was just diagnosed last week with the same. Only I had a hysterectomy 27 years ago. I don't know where mine started, but it has spread into my colon. I see the oncologist for the first time tomorrow. Can you tell me what chemo you are taking? Any suggestions for talking to the oncologist? How long ago were you diagnosed? Are there books you recommend? TIA

     

  • Urnmywy
    Urnmywy Member Posts: 25 Member
    #17
    lisom said:

    High-Grade Serous peritoneal Carcinoma

    Dear Ummywy,

    I was just diagnosed last week with the same. Only I had a hysterectomy 27 years ago. I don't know where mine started, but it has spread into my colon. I see the oncologist for the first time tomorrow. Can you tell me what chemo you are taking? Any suggestions for talking to the oncologist? How long ago were you diagnosed? Are there books you recommend? TIA

     

    Hi

    I'm taking carboplatin once a month IV infusion, w/ taxol 3x's a month. Supposed to do 6 cycles but it has dropped my white & red cells down to almost nothing. So doc is kicking me out of chemo & hope it was enough. Biggest thing is get part of the colon out that the cancer grows on, I did & I feel like that is giving a better longer survival time. Stay in touch... hope you get some answers soon 

  • lisom
    lisom Member Posts: 2 Member
    edited February 2021 #18
    Urnmywy said:

    Hi

    I'm taking carboplatin once a month IV infusion, w/ taxol 3x's a month. Supposed to do 6 cycles but it has dropped my white & red cells down to almost nothing. So doc is kicking me out of chemo & hope it was enough. Biggest thing is get part of the colon out that the cancer grows on, I did & I feel like that is giving a better longer survival time. Stay in touch... hope you get some answers soon 

    Urnmywy, thank you for the reply. I appreciate the tip on the colon. Prayers that the treatments you have received lengthen your  survival. 

  • Urnmywy
    Urnmywy Member Posts: 25 Member
    edited March 2021 #19
    lisom said:

    Urnmywy, thank you for the reply. I appreciate the tip on the colon. Prayers that the treatments you have received lengthen your  survival. 

    post chemo ....

    Had a scan this week and the doc says there is no evidedance of cancer, but it will be back. so....I'm confused!!  I will be scanned now every 3 months to see when it reaccures. Not sure what to think now. How about you, and surgery? hope youre feeling ok

  • Chuck Z
    Chuck Z Member Posts: 22
    #20
    Urnmywy said:

    post chemo ....

    Had a scan this week and the doc says there is no evidedance of cancer, but it will be back. so....I'm confused!!  I will be scanned now every 3 months to see when it reaccures. Not sure what to think now. How about you, and surgery? hope youre feeling ok

    Feeling confused

    My late wife was NED for five years before she had her first reacurrence. We new from day one that at some point it would return. You most likely will always have the cancer cells floating around in your system and it's just a crap shoot on when it will return. But her Oncologist always told us that the longer you go without a reacurrence the better the chance of getting back to NED. She survived for seven an half years. In the end it was not the Ovarian cancer that she surcumb to. All the Carboplatinum that she had had over the years caused her to get AML. If it weren't for the AML, she might have been able to make it to the ten year mark. For some odd reason those who are BRACA positive seem to respond to treatments better then those who aren't. Her Oncologist Gynecologist told her that he had a handful of ladies who were ten year survivors. And that the majority of them were BRACA positive. PS. She also battled TNBC twice in those seven plus years.

  • grammadebbie
    grammadebbie Member Posts: 464
    edited June 2021 #21
    So Confusing

    Hello all,  Sorry we all have to be here but it is so nice to have support.

     

    2007 Stage III partial colectomy, 11 FOLFOX treatments.  Have been NED all this time.  Now PET scans show 2 areas of probable active malignancy near anstomosis site. They did 2 PETs 4/23 and 5/13.  Then colonoscopy was clear.  Most likely on outside of colon..peritoineum.  CT normal.  

     

    I live in Nevada and there are no major cancer centers here so getting approval for UCIrvine  Chao Comprehensive Cancer Center or Mayo Clinic in AZ.  I have been trying to get treatment since the end of February.  Oncologist didn't know what to do so sent me to general surgeon (he is great) who was angry that the oncologist hadn't done more testing.  The surgeon and me didn't want to do an open exploratory surgery without more information.  He sent me to a gastro dr to get a EUS Endoscopic ultrasound with needle biopsy.  Scheduled 6/25 or sooner.  If it comes back positive that is that however if it comes back negative it will be inconclusive because they may have missed the malignancy site.

     

    This is soooooo confusing and frustrating.  I have been looking up secondary peritoneal  treatments and it look pretty serious.  I was just hoping to have some input and personal experiences dealing with this.  The colon cancer board really doesnt have anything on this.  I have been praying for you all and hope to hear from you.

    Debbie   

    My picture is from 2007 and I am  really a blond.  The red is a wig to offset the green face from chemoKiss

     

     

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