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Is there a stage 5

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Hi,

I've been doing a lot of researching online tonight and although there is mention of stage 3 and 4, there is no mention of stage 5.

I read that there is only stage 3 and stage 4, and stage 3 is when the cancer is contained to the peritoneum. Stage 4 is when it has travelled to somewhere else, including the pelvis or to the lung. I know that I had to be drained of fluid from the lung at the beginning, but I would have expected that one would have a lot more pain than I have ever had, and much more serious side effects. I've only ever had a cough and an uncomfortable feeling in the stomach when it was distended with fluid. I know of course that others experience symptoms much worse than mine, but I would have thought that if the cancer had spread to other organs and created tumors in those other places that that would constitute a much worse scenario than what I've experienced. I would have thought there was a place for stage 5 at least in those cases.

I find it strange that there is only stage 3 and 4, despite the enormous differences in the extent of the spread of our cancer.

Just thinking...

AussieMaddie

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Aussie Maddie: Nope but there are different stages within each stage like IV-A, B, C (different countries use different notations though). I suspect Stage 5 is you're gone, to be crass. I know I've been diagnosed as Stage IV gallbladder cancer as, even though the gallbladder and its tumour have been removed surgically, the cancer spread to other places, in my case so far the peritoneum. But it hasn't spread beyond there apparently, again so far, so maybe I am stage IV-A? or whatever the notation is in Canada.
Cheryl

abrub's picture
abrub
Posts: 1533
Joined: Mar 2010

I'm Stage 4, with no lymph node involvement. However, since the cancer was found on/in other than the originating organ, the staging protocol puts me at Stage 4.

Because I have no lymph node involvement, I'm actually better off than most stage 3s.

No, there is no stage 5.

Best Friend
Posts: 222
Joined: May 2011

There is an actual chart u can look up. When they diagnosed my mom the general surgeon had no idea and said it was gonna be a 4. the oncologist came in and than he had to send the tissues away and stuff for more accuracy. So, I wanted to know. So i looked up PPC. than the staging? I knew exactly what organs it was in and most of the info. So I staged my own mom. Ha. Horrible. I said 3c. Well, at the first oncologist appt my dad asked him what stage? Stage 4? It was funny cuz i was like no dad, it's more like a 3c. The doctor just looked at me and than said yes, she's exactly right. It's amazing how much i have learned about cancer.

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

Stage 4 is the highest it goes. Stage 4 means the cancer has spread - secondaries. Everyone with PPC is stage 3 (not sure why I just know??) and within stage 3 are categories. If you go on the internet you can probably find out.

I am stage 4 because I had fluid around my lungs with malignant cells in it. That was how they found out about my cancer.

I ask lots and lots of questions whenever I go to the hospital. You see the knowledge reassures me. Not knowing stuff scares me.

Love Tina xx

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Thank you Tina. I always ask a lot of questions too. For some reason, hadn't thought to ask my onc. about staging for me. Looked it up on the internet. My onc. tends to be non-committal about a lot of things when I asked questions like that.
Take care,
AussieMaddie

abrub's picture
abrub
Posts: 1533
Joined: Mar 2010

Staging, at least for Appendix cancer is not considered terribly relevant. It may be the same for peritoneal cancer. In my case, staging was mentioned as a distant after-thought. My stage 4 has no relation to another cancer's stage 4, because mine was not from systemic spread, but rather the "dandelion effect" - seeds scattering and growing where they touched. Once you start to involve lymph nodes, however, staging becomes more relevant.

In any event, we have what we have, and have to deal with it. Statistics apply to groups, not to individuals, so Stage 4 statistics don't apply to me.

Heck, if I relied on statistics, there is an infinitesimal chance that I'd have appendix cancer. Some of my complications and side effects are also very rare. So I didn't fall into the 99% for my cancer type or my complications type. So far, I'm also falling into the "good" group for prognosis. The stats within stats within stats are on my side for that, and so far, I'm holding true.

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

My Onc consultant is also non-committal and it winds me up and actually gives me more anxiety. However, his Registrar is very open and honest and once spent a whole hour just talking to me and reassuring me but also honest. I much prefer to see him :)

Take care Tina xx

Best Friend
Posts: 222
Joined: May 2011

So u had the cancer in ur peritoneum and they still didn't find it. I say to my mom all the years she was poppin tagamet or pepcid, these were all symptoms. Were u having these symptoms and just related them to stomach problems? I just think it's amazing how long this cancer goes undetected. it makes me sick.

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

I wondered if my lifetime of binge eating might have been related to this cancer, but we've all lived very diverse lives. Peritoneal Cancer is a rare cancer that has its own rules.

The only symptoms I had for my peritoneal cancer was when, *despite* my bingeing I knew that my stomach was distending beyond what even my eating could account for. I knew that to be true because with bingeing, your stomach still goes down between binges. When your stomach is full of fluid (or perhaps "air bubbles" as must be the case now, since I don't have any fluid in my abdomen or lungs), my stomach remains very taut. You try to push it in and you can't. I's simply too tight, and you can't sleep because the discomfort it causes you just won't allow you to sleep. One other symptom was that I was having falls because I was so weighted down so heavily down the front of my stomach, that when I would first stand up, I too easily went forward, lose balance as I stood up. (It happened again recently when I stood up from my toilet. I helped myself from getting hurt as I went down, then turned around on my knees and used the toilet to help lift myself up (It is certain that no-one else could have got me up!) Finally, the last symptom, was that I was very short of breath. The pressure inside my distended stomach was such that my lungs didn't have enough space to expand when they filled with air. Consequently, they couldn't expand, so I had a cough. My GP missed those cues, put it all down to the bingeing. I had to see a different GP who advised me to have an ultrasound on my abdome which found the fluid filling my abdomen, and the technician said that I should immediately sit up. My lungs needed all the space they could have just to breathe.

And I had no idea!

I don't know exactly how long my stomach was distended from the fluid and not from my bingeing, but it certain that if I hadn't been bingeing, it would have been picked up more quickly,

But my bingeing never caused it.

AussieMaddie

Best Friend
Posts: 222
Joined: May 2011

So u had the cancer in ur peritoneum and they still didn't find it. I say to my mom all the years she was poppin tagamet or pepcid, these were all symptoms. Were u having these symptoms and just related them to stomach problems? I just think it's amazing how long this cancer goes undetected. it makes me sick.

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Thank you everyone for your replies. I can't linger online right now. Just wanted to pop in briefly.
Thank you and take csre all xxx000
AussieMaddie

Best Friend
Posts: 222
Joined: May 2011

I too feel that this type of cancer has to do with issues involving the stomach or colon. Whether that be overeating, colitis, krohn's, etc. Mom has had problems with her bowels since i was very young. All those years on prednisone could not have helped. Her cousin had been on prednisone for years also and they found liver cancer and than she died so fast.
I feel like docs cure one thing but they don't realize how much it could affect u down the line. Medications and such. They research them. But how about taking them for 10, 20 yrs?

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

If you want to be precise, there can be five stages of cancer starting with stage 0 (mostly used for breast/cervical cancer in situ or bladder cancer). Not all cancers are staged the same.

How are you, Aussie Maddie?

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