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Recently diagnosed

bobbyandzippy
Posts: 3
Joined: Sep 2020

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

ppurdin's picture
ppurdin
Posts: 1184
Joined: Jul 2009

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
Posts: 3
Joined: Sep 2020

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

 

Urnmywy's picture
Urnmywy
Posts: 13
Joined: Oct 2020

How are you feeling? 

obterry
Posts: 1
Joined: Oct 2020

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's picture
Urnmywy
Posts: 13
Joined: Oct 2020

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. 

Paulabarnes
Posts: 1
Joined: Oct 2020

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

Urnmywy's picture
Urnmywy
Posts: 13
Joined: Oct 2020

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
Posts: 22
Joined: Jul 2018

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's picture
Urnmywy
Posts: 13
Joined: Oct 2020

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
Posts: 22
Joined: Jul 2018

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's picture
Urnmywy
Posts: 13
Joined: Oct 2020

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's picture
ppurdin
Posts: 1184
Joined: Jul 2009

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

Diane The Fighter's picture
Diane The Fighter
Posts: 15
Joined: Oct 2020
Urnmywy's picture
Urnmywy
Posts: 13
Joined: Oct 2020

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
Posts: 2
Joined: Jan 2021

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's picture
Urnmywy
Posts: 13
Joined: Oct 2020

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
Posts: 2
Joined: Jan 2021

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

Urnmywy's picture
Urnmywy
Posts: 13
Joined: Oct 2020

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
Posts: 22
Joined: Jul 2018

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's picture
grammadebbie
Posts: 471
Joined: Jun 2009

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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