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I HAVE A FRIEND WHO HAS PERITONEAL CARCINOMATOSIS STAGE IV

msfanciful
Posts: 580
Joined: Nov 2009

Hello to all the ladies who has peritoneal cancer.

About January 2010 I met a friend who was in denial that she had this deadly cancer. Initially she thought she had ovarian stage IV cancer. Her numbers (ca-125) were 14,000 and she claimed that taking alkaline supplements brought her numbers down to 7. She refused her doctors' advice to have surgery. I just couldn't believe that supplements brought her down to a 7! After posing questions to her, I found out that along with the supplements she WAS also receiving carbo/taxol chemo. (I knew it!)

Initially her cat-scans showed signs of tumors everywhere and her doctor wanted to reduce them before giving her the debulking surgery. He had no idea that once her tumors were shrunken, that she would deny the surgery. (I know).

Her next visit with the doctor would be in May 2010. I told her this is way too long without surgery. But she refused. Her doctor called her everyday to no avail.

Well, I just got a call from her that her numbers have jumped to 800 as of February (from 7) now she's in a panic and started chemo again last Friday. The chemo is doxil, cistplastin and avastin? (I believe?)

She is actually considering surgery (praise God)

She had questions for me that I know nothing about, so if ANYONE can help with answers I would greatly appreciate it as this is just too much for her to absorb at this time.

#1. What is abnormal uptake?
#2 Thorax- increased soft tissue and update.
#3. Most of her tumors are located in the abdomen area.
#4. suv-max measured 5 x 5.3 cm?

I know it's a lot but I really help want to help my friend. I think her initial decision to deny surgery was based on her religious belief.

I asked her "then why did you take the chemo?" And she said "because I didn't want to die."

I told her that if she DIDN'T have this surgery soon what did she think would happen? It being the source of her cancer? She didn't answer so, I'm hoping to nudge her by helping to inform her about this disease.

Again, I thank anyone with any type of info.

Sharon

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I am so sorry to hear your friend has denied her cancer. I would say she is very frightened as we do that to ourselves. Pretend its not real, its not happening because the truth is too scary to take in. Not everyone has the reslove initially to deal with the diagnosis of cancer.

I'm afraid I can't answer your questions as I don't really understand them. It is true with peritoneal cancer, the tumours are in the abdominal cavity. They are more like cells on a sheet - scattered all over. I do know it can spread to the bowel if it is not stopped. Do you know why she was diagnoses stage 4? This disease is usually stage 3 unless it has spread.

I guess suv-max 5x5.3cm is the average size of the cells & if that is the case they are large enough to be operated on. (My cells are too small & spreadd too widely for my surgeon to attempt an operation)

I hope I have been of some use. I also hope she decides to have the surgery that has been recommended to her.

Love Tina xx

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

The suv would not be 5x5.3 5x5.3cm is the measured area of the tumor. The SUV(glucose uptake), if malignant, would be over 2.5.

Example reading from my PET/CT: right coloinc focus with increased metabolic activity SUV max 6.5, previously 4.7, corresponds to mural soft tissue, and it is consistent with an implant. New focus, SUV max 3.6, in the transverse colon is also concerning for an implant.

msfanciful
Posts: 580
Joined: Nov 2009

Hello Tina, Nancy and Worldtraveler,

Thank you all sooo much.

I have passed on all of your info to my friend and apparently she is becoming familiarized with everything each one of you discussed.

I couldn't help her because the terminology is a bit foreign to me. But she did begin to put things together. She has gotten through her first round of chemo and it appears to be weekly as well.

Also is it typical for this type of cancer to be treated with chemo first BEFORE debulking surgery? And does debulking surgery for peritoneal cancer also mean the removal of ovaries as well as for ovarian cancer? I hope this question doesn't get lost. But I will ask anyway.

Thank you all so much for you help.

xoxoxo's

Sharon

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

I do know women who have had chemo prior to the 'big surgery'. I'm not sure why they had chemo first. Maybe the disease is to extensive? Not sure what peritoneal cancer debulking would entail. I would hope, and assume, it would be a full hysterectomy.

Tasgirl's picture
Tasgirl
Posts: 85
Joined: Jun 2010

Hi Sharon

I'm sorry but I can't answer your questions but I HAD Peritoneal Cancer (I think it was stage 111) and was diagnosed Sept 08 and had surgery 20th Oct 2008 and started chemo 2 weeks later.
Did your friend have Ascites? I think it depends where you live as to what treatment is given and what stage your are at.
Sorry I can't be of any help.

Regards Jenny

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Hey Jenny it is good to see you on these boards. I recognised your photo before I realised it was you.

Love Tina xx

pjdreams's picture
pjdreams
Posts: 79
Joined: May 2010

sorry for the very basic question but I'm trying to follow this thread and can't get past "SUV". What is SUV ?

Sharon I'm sorry your friend is having such trouble coming to grips with her condition but this really emphasizes the importance of having a good gyn/oncologist that you trust who can answer many of these questions.
I hope she gets further treatment soon.

Paula

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

I forget what SUV actually stands for but it is the measurable amount of glucose the cells take in. It is measured on a PETSCAN. They inject you with a radioactive glucose and measure the uptake. The amount of uptake is referred to as the 'SUV'. Anything over 2.5 is considered likely to be malignant.

msfanciful
Posts: 580
Joined: Nov 2009

Hi Paula,

SUV is the measurement of the metabolic activity I have since found out.

Also (Nancy), she said that they wanted to begin chemo first because her tumors were too numerous to even think about operating?

I believe they are insisting that she has a complete hysterectomy once it time for her surgery.

She also had acites of which they also had to drain. I got back to her with all of your answers/suggestions and each helped her greatly.

Thank you all again for your responses.

Love Sharon

sanam's picture
sanam
Posts: 112
Joined: May 2010

Dear Sharon
I myself have a question regarding PPC.
When I recieved my mom diagnosis back in December 09,the Oncologst wrote on her final Dx paper: Ovorian cancer or PPC.Then I did a lot of googling and I understood what it is.
Then I asked him ,finally what my mom's cancer is.He said he doesn't know and it does not make any diffrence.
I sent her CT sacn to my cousin in US who is a doctor in California and he made a work up in his hospital and he reassured me that it is not PPC.(in her first Ct there was no tumor,there was only a lesion between liver and colon that doctors said it can be condenced ascites)
Note: My mom had chemo first and then surgery.
My question is: IS PPC diagnosable through CT scan or like staging it should be diagnosed after surgery?

Karen9182
Posts: 62
Joined: May 2010

I have peritoneal cancer, stage 3c. I was at first told it was ovarian cancer because the largest mass surrounded the right ovary. The initial plan was for the surgery then chemo. Ater the PET scan, the plan changed to chemo first ( taxol/carbo -- three rounds) because of extensive involvement with the other ovary, uterus, tubes, colon omentum (sp?) and liver. My gyn/onc surgeon planned to do a bowel resection and liver work, but when she got inside, she found the chemo had done a wonderful job-- no need for either colon or liver work. She removed both ovaries, tubes, uterus, cervix, omentum and appendix (apr., 2010) The only sign of remaining tumor was on the peritoneal wall which was apparently scrubbed and rinsed with vigor. She said it was the best response to chemo she had seen in her career! She also said the ovaries looked completely normal, leading her to the conclusion that it was PPC. She said compared to OVCA, PPC looks the same on scans, identifies on the ca125 marker, and responds identically the the same treatment regimens as ovarian cancer. I believe the initial diagnosis is subjective until they actually see the tissue and run the pathology. Even after a CT guided needle biopsy, (before surgery) they took slides, stains and samples to the "tumor board" ( i felt so special) to try and decide what kind of cancer I had. I started IP chemo (a second port put in my belly during the debunking surgery) two weeks ago, and am "looking forward" (!?#$&@) to three more cycles.
Hope it helps, hang in there...
Karen

sanam's picture
sanam
Posts: 112
Joined: May 2010

Thans Karen.
In this case It still might be the PPC and we just don't know.
In her pathology report it was mentioned that there were many deposits of cancer cells or a term like that.
We have changed her oncologist after surgery .Maybe I should ask the new oncologist.
The surgon main cncern was for her bladder and pelvic area.He said he took what ever which was visible.

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I was diagnosed with PPC Nov 09. I was diagnosed after I had asites and plueral effusion. When I had the fluid around my lungs the doctors suspected I had cancer somewhere........... but didn't know where. They originally thought it may be breast cancer but I had a mammogramm which was clear. So they drew off some fluid from my lungs and sent it off to be tested. Yes, there were cancer cells in there but they still didn't know where the cancer was coming from. Because I also had fluid in my stomach so the doctors were really baffled.

So to get round to your question, I had a CT scan and it was that scan that showed where the cancer was - in the lining of my abdomen. Because the fluid had gone into my lung cavity I am stage 4. My CA 125 was 1119.

Hope this helps, love Tina xx

sanam's picture
sanam
Posts: 112
Joined: May 2010

Thanks Tina.
Your status is so similar to my mom.The only diifrence is that there was no fluid around her lungs it was only in her abdominal cavity and it contained cancer cells.
In her first CT there was nothing close to ovaries but in the second CT(after 6 rounds of taxol/carbo) ,a cyst on right ovary appeared.
Hugs

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

My ovaries and uterus are cancer free. I asked the doctor "why won't you remove them to prevent the cancer spreading there" The answer was: because my cancer cells are spread out like on a sheet they were worried about disturbing them and making them distribute further. They will monitor me closely for a year and if everything remains stable they may operate.

I have a small cyst on one of my ovaries but it is a cyst and not cancer so they aren't worried.

Much Love

sanam's picture
sanam
Posts: 112
Joined: May 2010

I went through her path report again!
It was mentioned that there were deposits of carcinoma cells in peritoneum but the right ovary was not deposited but it was the carcinoma cells.What I cocluded as Dr.Sanam(!) is that the source is the ovary and not periteneum.

msfanciful
Posts: 580
Joined: Nov 2009

Hello Sanam,

Being that this cancer is so unfamiliar to me (however, of interest though), there are so many foreign terms I am just beginning to understand. My cancer is ovarian cancer but I understand that the cell tissues are still the same and thus treated the same with what they have to fight with at this time.
My friends peritoneal cancer was detected by way of cat-scan and pet-scan.

I spoke with her and she is definitely going to have the full hysterectomy.

Thanks everyone for you responses, I relayed your messages to her and they seemed to give her a great sense of peace. She also recognized a lot of the terms you all referred to.

Love you all,

Sharon

sanam's picture
sanam
Posts: 112
Joined: May 2010

Thanks for raising this subject.It clarified many points to me.

grannyto2
Posts: 4
Joined: Jun 2010

Some people just fight! I know two of them. One a man and the other a woman. They both argue with their doctors about the treatments the doctor wants to do.

sanam's picture
sanam
Posts: 112
Joined: May 2010

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