Hi, new and scared

SOPHIE333

Hi, new to this board. Mum the one being diagnosed with ppc stage 4 no spread in lymph nodes. On caarbo/taxol 4 rounds. Scheduled for 6 rounds. Stomach problem and surgery (not debulking as tumors pread is "seed". No primary tumour found (yet?). Mum is not eating much, 61 yrs and a lot of anxiety and panic. Me in 40´s, children and lives close. Try to be there as much as I can (she is in bed at home sith professional home nursing 3 times a day). I am scared. Want to enter this board for support. Want the ppc to be "chronic" rather than final.. Any survival stories that I can take part of and tell mum?

Love to you all,
Sophie

daBeachBum

Hi Sophie
Hi Sophie,

I replied to your other post in the thread "Any recommendations for the newly diagnosed" as well. I am one of the few guys here and my peritoneal caking is secondary to colon cancer, so I don't have many specifics to offer you. There are however many women here whose diagnoses are similar to your mom's and have been fighting and coping with this with success. I am sure they will be checking in.

Take good care of your mom and of you! There is a caregivers forum on CSN as well that is active and may also be a good resource.

Strength and love to you all!

Ray

westie66

daBeachBum said:

Hi Sophie
Hi Sophie,

I replied to your other post in the thread "Any recommendations for the newly diagnosed" as well. I am one of the few guys here and my peritoneal caking is secondary to colon cancer, so I don't have many specifics to offer you. There are however many women here whose diagnoses are similar to your mom's and have been fighting and coping with this with success. I am sure they will be checking in.

Take good care of your mom and of you! There is a caregivers forum on CSN as well that is active and may also be a good resource.

Strength and love to you all!

Ray

Primary Peritoneal Carcinoma
Hi sophie: Yes, lots of women will have lots of positive stories for you on this discussion thread - check out all of the threads. You might also find some good information on the Ovarian Cancer discussion thread as many women with ovarian cancer also get secondary peritoneum cancer. Your mom has a good daughter!
Cheryl

AussieMaddie

Hi Sophie
We can never be sure how long an individual's cancer will take but from all I've read here, there are some people who have lived many years with this cancer. Many of us agree to see it as "something to be managed", like diabetes, rather than imminently terminal.

So far, I've outlasted my original prognosis. I was given only months but I've responded so well to the carbo/taxol chemotherapy that, so far, I've not needed any other surgery etc. Unlike most people here, no CT or PET scan has shown anything at all anywhere in my body. My only symptom was the fluid in the abdomen, and for a while in one lung (called "ascites"), and the chemotherapy has completely stopped that for now. I have one more cycle before my oncologist will stop the chemotherapy and see how I go. Just keep an eye on me each month.

Taking it a day at a time. That's all we can do.

Take good care of your mum and of you.

Best wishes,

AussieMaddie
xxx

SOPHIE333

AussieMaddie said:

Hi Sophie
We can never be sure how long an individual's cancer will take but from all I've read here, there are some people who have lived many years with this cancer. Many of us agree to see it as "something to be managed", like diabetes, rather than imminently terminal.

So far, I've outlasted my original prognosis. I was given only months but I've responded so well to the carbo/taxol chemotherapy that, so far, I've not needed any other surgery etc. Unlike most people here, no CT or PET scan has shown anything at all anywhere in my body. My only symptom was the fluid in the abdomen, and for a while in one lung (called "ascites"), and the chemotherapy has completely stopped that for now. I have one more cycle before my oncologist will stop the chemotherapy and see how I go. Just keep an eye on me each month.

Taking it a day at a time. That's all we can do.

Take good care of your mum and of you.

Best wishes,

AussieMaddie
xxx

Supportive
Hi all, thank you very much for your answersn and support! And I am glad that you seem to do well with this desease and live many years. I dearly hope that all of you will be in a "chronic phase" for long as I have read that this is the goal with the treatment. I will pass on your words to mum and see if she can rise above her severe anxiety. I have to aks AussieMaddie, do you live in the States or Down under? My dad is from Canberra.

I am really glad to hear that treatment works for you and may it continue for a long time!

Love,
Sophie

Best Friend

Hey
Just hang in there. My mom is 62.She was told she was gonna die by her general surgery. She had 3 chemos, debulking, and she only has a little tumor on her spleen. They said 9 more weeks and she could be in remission. I just know that SHE has to decide how she wants this cancer to behave. The stronger she is, the farther she can go. I know it seems unreachable but my mom is doing it and she had given up in the beginning. If she can be cancer free for a couple years so we can continue living on and doing the things that she wants to do. Trust me. We are ready to do so much. Traveling and just spending tons of time together. It makes the family soooo much closer. I go out with friends now and i wanna come right home to check on my mom. I let her know just how much i love her. It is something all people should do but most don't and than it is tooo late.
Here for ya when you need me!

eward

Best Friend said:

Hey
Just hang in there. My mom is 62.She was told she was gonna die by her general surgery. She had 3 chemos, debulking, and she only has a little tumor on her spleen. They said 9 more weeks and she could be in remission. I just know that SHE has to decide how she wants this cancer to behave. The stronger she is, the farther she can go. I know it seems unreachable but my mom is doing it and she had given up in the beginning. If she can be cancer free for a couple years so we can continue living on and doing the things that she wants to do. Trust me. We are ready to do so much. Traveling and just spending tons of time together. It makes the family soooo much closer. I go out with friends now and i wanna come right home to check on my mom. I let her know just how much i love her. It is something all people should do but most don't and than it is tooo late.
Here for ya when you need me!

I agree with Best Friend
Your mom(mum)'s determination is a huge factor in this cancer. My mom was diagnosed 2 years and 4 months ago with stage IV PPC. She had 3 small tumors, lung ascites, and seeding in her abdomen. She has been in chemo ever since diagnosis, but she is determined to live and keeps fighting. She came to my house today to spend time with my kids and I. She takes a nap every day, thankfully she is retired, but she does a lot more than I thought she would way back when she was diagnosed. There are constant ups and downs. Be prepared for that. Often what you think will be the worst thing ever will be a bump in the road.

My mom is like yours...62 when diagnosed and now she is 65. I am 42 with two young children.

Take care of yourself!
xo
Eileen

lulu1010

eward said:

I agree with Best Friend
Your mom(mum)'s determination is a huge factor in this cancer. My mom was diagnosed 2 years and 4 months ago with stage IV PPC. She had 3 small tumors, lung ascites, and seeding in her abdomen. She has been in chemo ever since diagnosis, but she is determined to live and keeps fighting. She came to my house today to spend time with my kids and I. She takes a nap every day, thankfully she is retired, but she does a lot more than I thought she would way back when she was diagnosed. There are constant ups and downs. Be prepared for that. Often what you think will be the worst thing ever will be a bump in the road.

My mom is like yours...62 when diagnosed and now she is 65. I am 42 with two young children.

Take care of yourself!
xo
Eileen

There is lots of hope!
I ws much like your mom...I was stage IIIc but had the seeding and no actual tumor except for a small one that was growing into the intestinal wall. I was pretty close to being obstructed and was planning for the colostomy when one doctor suggested to do chemo first so the surgery would be less invasive. I had 4 treatments of Carbo (couldnt tolerate Taxol at that time) and then surgery. They removed ovaries and checked lymphnodes ...my omentum was already gone! Then I had 6 treatments of Carbo/Taxol. I am in remission now and feeling very well. You just have to get thru it. It seems like I was in a fog but just kept doing what I had to. Some days I didnt eat and only moved a minimal amount but in the end it was all worth it. I did take 4 mini-vacations during treatment in between treatments and the treatments got easier as time went on. Give your mom a hug and just be there for her. Hugs!...

SOPHIE333

lulu1010 said:

There is lots of hope!
I ws much like your mom...I was stage IIIc but had the seeding and no actual tumor except for a small one that was growing into the intestinal wall. I was pretty close to being obstructed and was planning for the colostomy when one doctor suggested to do chemo first so the surgery would be less invasive. I had 4 treatments of Carbo (couldnt tolerate Taxol at that time) and then surgery. They removed ovaries and checked lymphnodes ...my omentum was already gone! Then I had 6 treatments of Carbo/Taxol. I am in remission now and feeling very well. You just have to get thru it. It seems like I was in a fog but just kept doing what I had to. Some days I didnt eat and only moved a minimal amount but in the end it was all worth it. I did take 4 mini-vacations during treatment in between treatments and the treatments got easier as time went on. Give your mom a hug and just be there for her. Hugs!...

Lovely support!
Thank you all loving people of this board that helps me keep on track with the future. As I have learnt from you, determination is what I am trying to encourage mum to have. I want her to fight and I will keep being as optimistic as I can and not to scared (at least not in front of her). She is done with round 5 now and yesterday she was up after having a blood transfusion! Progress! I will go to her place with children tomorrow again, hope this will make her happy.

Thank you!
Sophie

kmichae2

New and Terrified
I got my diagnosis yesterday and was originally told it was ovarian cancer. Turns out it's not. After reading some of these posts, I'm very, very nervous. Is it true that there is no cure, only management? My stomach is very distended and it appears that as of Tuesday they will be scheduling my surgery. It will be nice to not be in pain all the time but it's pretty clear that I waited way too long to go to the doctor (however in my defense, I've been told on 3 different occasions that it was just a hernia). I see the oncologist on Tuesday and I'm wondering what questions it's necessary that I have answered.

Is there ANY chance it's an early stage if I have the bloating, you can actually feel the tumor when you touch my stomach and I'm in pain constantly at this point. When I stand up or roll over in bed if feels like my insides are being ripped apart.

I'm 44 years old with 2 kids and I never thought I could be this scared. Any insight you could provide would be greatly appreciated. Thanks so much!!

Kim

Carolyn68

kmichae2 said:

New and Terrified
I got my diagnosis yesterday and was originally told it was ovarian cancer. Turns out it's not. After reading some of these posts, I'm very, very nervous. Is it true that there is no cure, only management? My stomach is very distended and it appears that as of Tuesday they will be scheduling my surgery. It will be nice to not be in pain all the time but it's pretty clear that I waited way too long to go to the doctor (however in my defense, I've been told on 3 different occasions that it was just a hernia). I see the oncologist on Tuesday and I'm wondering what questions it's necessary that I have answered.

Is there ANY chance it's an early stage if I have the bloating, you can actually feel the tumor when you touch my stomach and I'm in pain constantly at this point. When I stand up or roll over in bed if feels like my insides are being ripped apart.

I'm 44 years old with 2 kids and I never thought I could be this scared. Any insight you could provide would be greatly appreciated. Thanks so much!!

Kim

Be Patient
I know the feeling of the unknown. But, until you see your oncologist I would just try and be calm. I have peritoneal cancer Stage 3C. My onc gave me a good prognosis. I have been cancer free for 15 months. When my onc first read my CT initially they thought I had ovarian cancer, but turns out that I had primary peritoneal cancer. However, my ovaries were involved. I had a total hysterectomy. My symptoms were I felt like I had a bladder infection...and I had a side ache. When first trying to figure out what I had, they thought I had appendix problems.Yes, I had bloating too, but not really any pain when I touched my stomach. Maybe you have fluid build-up. Instead of us giving you false hope or our diagnosis, I think it best you talk to your doctor. You will find out that everyone is different and you will have your own set of affects. Do you know for sure this is cancer? Who told you that you don't have ovarian cancer. I panic'd too, but just wait and see what the onc tells you. I was scared too, no denying it....it is a natural thing when you have been told bad news. I still get scared! First, you have to trust your doctor and move on from there..... I will say a prayer for you and your family. Let us know your outcome.....

AussieMaddie

kmichae2 said:

New and Terrified
I got my diagnosis yesterday and was originally told it was ovarian cancer. Turns out it's not. After reading some of these posts, I'm very, very nervous. Is it true that there is no cure, only management? My stomach is very distended and it appears that as of Tuesday they will be scheduling my surgery. It will be nice to not be in pain all the time but it's pretty clear that I waited way too long to go to the doctor (however in my defense, I've been told on 3 different occasions that it was just a hernia). I see the oncologist on Tuesday and I'm wondering what questions it's necessary that I have answered.

Is there ANY chance it's an early stage if I have the bloating, you can actually feel the tumor when you touch my stomach and I'm in pain constantly at this point. When I stand up or roll over in bed if feels like my insides are being ripped apart.

I'm 44 years old with 2 kids and I never thought I could be this scared. Any insight you could provide would be greatly appreciated. Thanks so much!!

Kim

Hi kmichae2 and welcome.On
Hi kmichae2 and welcome.

On this board, we have all experienced the bloating you describe. It's perhaps the most common part of our experience of peritoneal cancer. I cannot place being able to feel something, but since you can, that would be why they are scheduling surgery for you rather than going straight to chemotherapy.

There are people here whose cancer marker (called, in our case, CA125 and represented by a number) has fallen heaps (a very good thing) after having surgery. Yes, we seem all to be in agreement that this is a cancer that is managed rather than cured, but then so is diabetes. Would you feel as afraid if you had diabetes?

Coming here, to this board, you will get to see how the rest of us are managing this cancer. And some have been doing so for many years, so don't give up altogether just now. Ok?

Take good care.

I'll be thinking of you during the surgery - or at least around that time, as our times will vary according to which country we live in. I'm in Australia, very far away from most people here (but not alone in that)

For now,

AussieMaddie