Just been diagnosed and scared

Tina Brown

Not ever done anything like this before but I have been drawn to reading as much as I can find out about ladies who have been diagnosed with the same cancer as me - Primary Peritoneal Cancer. I will call it the beast as I have said before since I learnt of my diagnosis I feel like a beast has invaded my body.

I went to the hospital with what I thought was a chest infection as I had fluid build up on my lungs. My earnest hope was that they would just drain off the fluid, give me anitbiotics and sent me on my way. What a complete and utter shock I received when I was told it was not good news and the doctor proceeded to talk about cancer and abnormal cells within the fluid. He said they wouldn't drain off any fluid until they could find the source of the cancer. I was panic stricken and remained resolute as I was struggling to breathe. I returned to the hospital a week later in a real state as I could not breathe. The consultant looked at my chest x-ray and decided to put a drain in. Anyone who has endured this "procedure" will understand it when I say "It is a procedure one would undertake only if they really have no other choice!!!"

In the course of my hospital stay I had a second chest drain to help improve my breathing and numerous tests including a CT scan where they discovered I had fluid build up in my abdomen aswell and diagosed Primary Peritoneal Cancer. All told they drained 5 1/2 litres of fluid from around my lungs & I lost 6 pounds in weight (I have been trying to looose weight but this is a little extreme!!!!!)

The fluid in my abdomen is fairly bearable at the moment and I am awaiting my first appointment with my Oncologist tommorow. I am quite apprehensive about what he will say to me. I am well aware of the possible "Worst care scenario" but still really scared about hearing it all confirmed.

I would be so nice to hear from ladies who have similar experiences and can give me hope and reassurance. Maybe we can also share stories and treatment experiences.

Thanks Tina.

sweetp1950

Hi Tina
I can understand your feelings regarding the beast. I was diagnosed in July of this year with stage 3C Ovarian Cancer. Even tho we do not have the same Cancer, the feelings are real. You will find your way to deal with it, wether it be through your belief in God and his promises that He knows what you are going through, or by some other means, which for me, was only one way and that was through God's promises in scripture. I will be praying for you and hope that it is very very treatable. There is HOPE. Don't let go of that. Let me know the outcome. This is a great website to get support.

God Bless you and your family
Sheila

Moo

PPC
My mother received her diagnosis last March on her 79th birthday. She has had a long year. She had 3 cycles of Taxol, 3 weeks apart; surgery to debulk and remove any organs which might have cancer cells; and then was going to get 3 more rounds of Taxol, but developed a neuropathy in her feet after the first of these. She was then switched to a regime of Gemzar one week; Gemzar/carbo the next week; and then one week off for labs. So far she has had to postpone two of these treatments due to low platelet counts, but the Dr. said this just goes with the Gemzar. The last time, she just waited a week and the platelets were fine. So today they were low again, but hopefully she'll get treatments next week and the week after Thanksgiving and she'll be done for a while. Of course, she lost her hair, and when she was on the Taxol, she didn't have much of an appetite and things tasted funny. She is tired, but has been doing this since March, so I'm sure her body just needs a rest. Exhaustion is also just a side effect of the meds. When she was on the Taxol, she felt okay after the treatment for about 5 days, then felt like she had the flue for about a week, then felt good again the week before she took another treatment. This new regime is a little different, but everything tastes good again and she is eating well. All in all, she has held up well for someone her age and even though her platelets were low and she didn't get the treatment today, her CA-125 had dropped to 29 (within normal limits). The doctor was pleased as she wasn't sure it would go that low. I hope your appointment goes well tomorrow. There will be a lot of info to take in, but as you read from others, it certainly seems that there are a few meds that keep coming up and although they have side effects, seem to do well treating the cancer. Stay strong and positive....a good attitude is most important. Good luck

bonnie thomas

hi tina
god bless you tina
i have ovarian, but my neicewas told hse had a lung thing going on and was put in hospital . she was told the tumor in her lung was not cancer , then 4 days later they told her she had cancer and it was in hte fluid like the fluid in her joints, o my god we were shocked as i was told in april and she was told about 7 nonths later . she is grest had chmo and all that is in remission now and back to work, she was 32 at the time has 2 kids , dont know if this helps she did not have fluid in stomash , did around lungs and had a tube and all that . dont know if this is the same you have, hope you will have a good dr visit.the fluid being draned off she said was very bad to her. it is her me and a sisn law all told we had ca with in the last year and a half. please let me know what the dr tells you ok i might can help god be with you i will be praying ok,
bonnie

Tina Brown

sweetp1950 said:

Hi Tina
I can understand your feelings regarding the beast. I was diagnosed in July of this year with stage 3C Ovarian Cancer. Even tho we do not have the same Cancer, the feelings are real. You will find your way to deal with it, wether it be through your belief in God and his promises that He knows what you are going through, or by some other means, which for me, was only one way and that was through God's promises in scripture. I will be praying for you and hope that it is very very treatable. There is HOPE. Don't let go of that. Let me know the outcome. This is a great website to get support.

God Bless you and your family
Sheila

Hi Sheila
I understand how you have been able to turn to God. That must be a wonderful source of comfort. I lost my mum last year to bowel & liver cancer. She was a great beliver in God and was reassured that she will be soon reunited with her own mother. It was a really hard time for my family, particulary my son. I can't help thinking that it is not fair - I thought as my son now faces losing his mum as well as his Gran in a short space of time. At the moment I can't think about how a God can be this cruel as to put my family through the trauma of another death.

My Oncologist has told me that my cancer is not curable but it can be managed with Chemo. I am quite a fit person & have always had a healthy lifestyle so I am hoping I can cope with the chemo long enough for it to work.

I think today is a bad day for me Sorry.

I hope your treatment goes well for you Sheila. Best wishes Tina

ladyjogger31

bonnie thomas said:

hi tina
god bless you tina
i have ovarian, but my neicewas told hse had a lung thing going on and was put in hospital . she was told the tumor in her lung was not cancer , then 4 days later they told her she had cancer and it was in hte fluid like the fluid in her joints, o my god we were shocked as i was told in april and she was told about 7 nonths later . she is grest had chmo and all that is in remission now and back to work, she was 32 at the time has 2 kids , dont know if this helps she did not have fluid in stomash , did around lungs and had a tube and all that . dont know if this is the same you have, hope you will have a good dr visit.the fluid being draned off she said was very bad to her. it is her me and a sisn law all told we had ca with in the last year and a half. please let me know what the dr tells you ok i might can help god be with you i will be praying ok,
bonnie

Welcome
Welcome, so sorry to meet this way. You will definitely find this a place to share your ups and downs, ask questions and help others. These are amazing woman here full of encouragement, enthusiam, compassion and support.I'm also a stage 3c and have been fighting this since Feb 2008. I recently had 5 1/4 fluid drained fron my stomach. Sending you positive thoughts and blessings.
Hugs and Prayers
Terry

sweetp1950

Tina Brown said:

Hi Sheila
I understand how you have been able to turn to God. That must be a wonderful source of comfort. I lost my mum last year to bowel & liver cancer. She was a great beliver in God and was reassured that she will be soon reunited with her own mother. It was a really hard time for my family, particulary my son. I can't help thinking that it is not fair - I thought as my son now faces losing his mum as well as his Gran in a short space of time. At the moment I can't think about how a God can be this cruel as to put my family through the trauma of another death.

My Oncologist has told me that my cancer is not curable but it can be managed with Chemo. I am quite a fit person & have always had a healthy lifestyle so I am hoping I can cope with the chemo long enough for it to work.

I think today is a bad day for me Sorry.

I hope your treatment goes well for you Sheila. Best wishes Tina

Hi Tina
I am so sorry to hear about your mother. If she had the faith, she is now in Heaven and is not longer in any pain. I know this is a hard time for you and believe me, I felt the same way that you did that there is not cure, only remission. Tina, you have to stay positive, and believe that God is watching over us all. You have to believe that you will get through this for you and your son and family. I still struggle with the idea that I will not see my daughter have her child thats due in July 2010. But I have made up my mind that I am going to fight with all that I have and with God at the helm, I know I'm going to do it.

God Bless You and I will be praying for you and your family.....


Sheila

Susan523

Hello, Tina
My cancer sounds the same as yours. I was diagnosed in May 2006,age 48, when I went to my gynecologist thinking I needed something for the beginning of menopause. Bloating was my main complaint. He did an ultrasound to check my uterus lining for signs of menopause, and that's when he found the fluid and said "I don't like what I see".

I was immediately referred to a Gynecological Oncologist who confirmed Ovarian Cancer which included the Paritineum. I had surgery and then began chemo. Stage 3c. The cancer
had already metasticized to my intestines, colon, appendix, lower diaphragm.

It's been 3 1/2 years, and I am now on my 4th round of chemo; this time Taxol/Carbo and Avastin. This latest recurrence came back as the fluid as you described; and my abdomen was so swollen that I still have huge stretch marks. They drained 4 liters of fluid the 1st time, and 2 weeks later I was back in the hospital and they got a little over 3 more liters. Both times they had cancer cells. The 2nd time it occurred, my oncologist started
chemotherapy immediately. I couldn't even eat or hold any food down, as the pressure on my organs was so awful. I lost about 25lbs.; like you said, this is NOT the way I want to lose weight! (And it's the first time in my life that I've ever had trouble putting weight
back on).

If I were you, I would try to find a local Gynecology-Oncologist who specialized in our beasts.

Best of luck to you, and let us know if you have any questions. You found a great place for support and first-hand information. Don't ever give up hope. Hope gives me motivation and strength. And I know what you mean about being angry with God. I didn't talk to God for quite a while; and when I don't "feel" God or "feel" like my prayers are not being answered, I still have Hope.

Take care,
~Susan xoxo

Tina Brown

Susan523 said:

Hello, Tina
My cancer sounds the same as yours. I was diagnosed in May 2006,age 48, when I went to my gynecologist thinking I needed something for the beginning of menopause. Bloating was my main complaint. He did an ultrasound to check my uterus lining for signs of menopause, and that's when he found the fluid and said "I don't like what I see".

I was immediately referred to a Gynecological Oncologist who confirmed Ovarian Cancer which included the Paritineum. I had surgery and then began chemo. Stage 3c. The cancer
had already metasticized to my intestines, colon, appendix, lower diaphragm.

It's been 3 1/2 years, and I am now on my 4th round of chemo; this time Taxol/Carbo and Avastin. This latest recurrence came back as the fluid as you described; and my abdomen was so swollen that I still have huge stretch marks. They drained 4 liters of fluid the 1st time, and 2 weeks later I was back in the hospital and they got a little over 3 more liters. Both times they had cancer cells. The 2nd time it occurred, my oncologist started
chemotherapy immediately. I couldn't even eat or hold any food down, as the pressure on my organs was so awful. I lost about 25lbs.; like you said, this is NOT the way I want to lose weight! (And it's the first time in my life that I've ever had trouble putting weight
back on).

If I were you, I would try to find a local Gynecology-Oncologist who specialized in our beasts.

Best of luck to you, and let us know if you have any questions. You found a great place for support and first-hand information. Don't ever give up hope. Hope gives me motivation and strength. And I know what you mean about being angry with God. I didn't talk to God for quite a while; and when I don't "feel" God or "feel" like my prayers are not being answered, I still have Hope.

Take care,
~Susan xoxo

Hello to all you kind people who have replied to me
Reading through everyone's experiences has made me realise that we are all unique ladies with the same BEAST (as I call this cancer) that reacts in lots of different ways. Each and everyone of you are so so brave and strong and none of you seem to have ever given up on hope.

This is all a great source of courage for me because I think to myself that if you all can do then so can I. I have not started my treatment yet. I have to have a "new patient interview" first and will then be given a date for the treatment to start. Why don't they just get on with it?????? I do worry that a delay in treatment is not a good idea. I suppose I just have to accept that the doctors know what they are doing.

I have a friend who says that lots and lots of people are able to "live with cancer" for years and that you will just need to have chemo periodically to keep the BEAST in the cage (so to speak)

Lots of love to you all
Tina xxxxx

saundra

Tina Brown said:

Hello to all you kind people who have replied to me
Reading through everyone's experiences has made me realise that we are all unique ladies with the same BEAST (as I call this cancer) that reacts in lots of different ways. Each and everyone of you are so so brave and strong and none of you seem to have ever given up on hope.

This is all a great source of courage for me because I think to myself that if you all can do then so can I. I have not started my treatment yet. I have to have a "new patient interview" first and will then be given a date for the treatment to start. Why don't they just get on with it?????? I do worry that a delay in treatment is not a good idea. I suppose I just have to accept that the doctors know what they are doing.

I have a friend who says that lots and lots of people are able to "live with cancer" for years and that you will just need to have chemo periodically to keep the BEAST in the cage (so to speak)

Lots of love to you all
Tina xxxxx

Wecome.
Sometimes I think that God has us wait in order to get used to this new thing in our lives. Use the time to write in a journal or grow emotionally and spiritually. That will make you stronger physically. You have the courage to be a good warrior. I have a friend that has battled peritoneal cancer for over 6 years and is still in the fight. Saundra

mopar

Tina Brown said:

Hello to all you kind people who have replied to me
Reading through everyone's experiences has made me realise that we are all unique ladies with the same BEAST (as I call this cancer) that reacts in lots of different ways. Each and everyone of you are so so brave and strong and none of you seem to have ever given up on hope.

This is all a great source of courage for me because I think to myself that if you all can do then so can I. I have not started my treatment yet. I have to have a "new patient interview" first and will then be given a date for the treatment to start. Why don't they just get on with it?????? I do worry that a delay in treatment is not a good idea. I suppose I just have to accept that the doctors know what they are doing.

I have a friend who says that lots and lots of people are able to "live with cancer" for years and that you will just need to have chemo periodically to keep the BEAST in the cage (so to speak)

Lots of love to you all
Tina xxxxx

HELLO, TINA
So much good advice from so many wonderful women. I can only offer my agreement AND prayers that you will find strength and peace through this. This is, unfortunately, a part of your life now. In time you will ease back into your 'normal' and learn to enjoy each moment that you can and not fret over the rest. We've all been there, and know what it's like. So I know it's not easy to do, but you can do it.

Sending lots of prayers and hugs for strength and wisdom. And for your children and family, that they will also find a way to deal with all of this. Take one day at a time and, as I always say, one MOMENT at a time if you have too.

Hugs & Prayers!
Monika

saundra

Tina Brown said:

Hi Sheila
I understand how you have been able to turn to God. That must be a wonderful source of comfort. I lost my mum last year to bowel & liver cancer. She was a great beliver in God and was reassured that she will be soon reunited with her own mother. It was a really hard time for my family, particulary my son. I can't help thinking that it is not fair - I thought as my son now faces losing his mum as well as his Gran in a short space of time. At the moment I can't think about how a God can be this cruel as to put my family through the trauma of another death.

My Oncologist has told me that my cancer is not curable but it can be managed with Chemo. I am quite a fit person & have always had a healthy lifestyle so I am hoping I can cope with the chemo long enough for it to work.

I think today is a bad day for me Sorry.

I hope your treatment goes well for you Sheila. Best wishes Tina

God Bless
I tend to think that God doesn't cause sickness for us or hard times, but He has certainly given me comfort and strength during the hard times of my life. He never promised that life would be easy. It's the reward at the end that is so sweet. Saundra

BonnieR

Hugs ♥ Prayers
Dearest Tina, I am so sorry you had to come to be a part of this group but know you well find much compassion, understanding and support from all these wonderful people here. Post often, aske questions, share your feelings as this is a safe place to all that.

I agree with Saundra God doesn't cause sickness for us or hard times, but through HIS strength during the hard times he has carried me through.

Prayers ♥ Hugs BonnieRose