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My mother was just diagnosed...

atleswoolf
Posts: 3
Joined: Aug 2011

Greetings, all!

What a relief it is to find this discussion board. I'm a college professor in Cincinnati, Ohio, and my mother was diagnosed with Stage IIIC PPC a few weeks ago. My mother's not one to ask a tremendous number of questions of her doctors, so I was hoping I could repeat here what the doctor said to her, and see whether or not you think this sounds as hopeful as I do.

After her hysterectomy, the doctor told my mother's husband that he actually "had difficulty finding the cancer," and that it was "not as invasive as he'd originally thought." After the pathology results came back, he told my mother, "I'm confident that I removed all the cancer during the surgery, and it had not moved beyond your abdominal cavity. And if there's any left, the chemo should take care of it. There's always a chance for this type of cancer to recur, but I'm confident that we have this taken care of." This guy is supposedly the top gyn/onc in Cincinnati, so in demand that he rotates around almost all of the major hospitals in the city.

Now, despite it being Stage IIIC, does this sound optimistic? Of course, the words do, but I made the horrible mistake of looking up the prognosis for this cancer on the web, and nearly fainted. I lost my father to a heart attack just nine months ago; I'd like to believe that my mother will be around for a bit longer. From other threads on this forum, I've taken heart that many of you are struggling valiantly with this illness, and leading full lives, and that with the right kinds of treatment, this disease can become a chronic but manageable condition.

She begins her first round of chemo on August 11th. I look forward to whatever insight or thoughts any of you can provide.

Best wishes to you all.
Drew

SOPHIE333
Posts: 92
Joined: May 2011

Hi,

First I regret that we have to meet on this forum but my mum was recently diagnosed with ppc too. Though in stage IV, i.e spread acites to lungs also. So what I know of and been reading on this forum, your mother is in a more positive stage not spreading outside her abdomen. My mum is responding to her treatment with chemo carbo/tox and I hope it will keep doing so and thus bee in a "chronic state" for a long time. She even has a lot of hair left! Sounds silly but she is thrilled over it!

Hope treatment will do "the job" for your mum.

Love,
Sophie

atleswoolf
Posts: 3
Joined: Aug 2011

Thanks for the support, Sophie! I do hope your mum continues to respond to the treatment. I'll keep you posted here about my mother's progress. I'm going to a seminar tonight at our local cancer wellness center about how to "eliminate negative thinking." I hope it helps -- I have a tendency to catastrophize and assume the worst, which does neither my mother nor me any good. I realized this morning as I was exercising that if I let my mother's cancer dominate my thinking all day long, then the cancer wins. And I sure as hell don't want to give it any more than it's already taking.

Are you in Britain? I ask because of "mum." :) I teach British literature and am enamored of all things English. I just got back from six weeks there, and it was sublime.

Much love to you, as well.
Drew

SOPHIE333
Posts: 92
Joined: May 2011

Hi,
Thank you for your reply! No, not British but half Australian, living in Europe! Hope everything goes well for your mum and that you can communicate about treatments and symptoms during the this period. Me and my mum are very close and fighting this together (me a bit more than mum - but thats our personalities). This I will always have in my hart.
My thoughts to you,
Love Sophie

abrub's picture
abrub
Posts: 1521
Joined: Mar 2010

I, too, was told that he thinks he got everything. I had IP and systemic chemo after, but have now been clear for 4 years, and feeling great.

Wishing your mother a healthy outcome!

Alice

PS - what to you teach?

Kathleen8965's picture
Kathleen8965
Posts: 1
Joined: Aug 2011

The fact that the dr. had a hard time finding the cancer is good. A few things to consider-
Before being diagnosed, did she have ascites/fluid in abdomen or around lungs?
Did she have a CT that showed anything? Did the dr. say anything about the lab report, like if the cancer was agressive or not? What was her CA-125? All of these will influence her prognosis. I was 41 when diagnosed with PPC stage III about 11 years ago. I also read everything on the web and while its good to learn as much as you can, what you read may not pertain to your mom at all. Her dr. can give you a better idea of what to expect. I hope she does well with the chemo. I never got sick but watch out for constipation. They never tell you about that!

daBeachBum's picture
daBeachBum
Posts: 164
Joined: Apr 2011

Kathleen,

I am very pleased that you have done so well dealing with all of this and taken the time to post :-)

I hope that you check in with us as you can. You would be a very welcome addition here since this is a new group and undoubtedly have much good information to share.

Strength and love!

Ray

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

Want to say hi to you too Kathleen.

It is good to have a board just for those of us with peritoneal cancer. This way we can compare notes more easily.

11 years seems a long time to go with this cancer. (And 41 is too young to get cancer at all!) You have obviously fought it very well. Your words sound like those of someone who is very familiar with the problem, which is an asset to have on the board.

I never got sick on the chemo either, and you're so right about the constipation. I worked for ages to find the best way around that - mostly, stool softeners and lots of water.

Hope your stay in the group/s here proves as helpful to you as I expect yours will be to us.

Best wishes,

AussieMaddie

daBeachBum's picture
daBeachBum
Posts: 164
Joined: Apr 2011

Drew,

I'm one of the few guys on here and my peritoneal cancer is secondary to colon cancer. As such, I won't have much to ofer you in the way of advice. I can say however that the doctor's report sounds very encouraging to me. I hope this is the case and your mom can get an easy chemo regimen that will allow her to live her life well.

Take care of yourself too! It may sound crazy, but this could be very well as stressful for you as it is for her. There is a Caregivers forum on CSN as well that may be helpful.

Livestrong.org is a great resource too. They don't give out medical advice, but they have lots of great information on the other aspects of living with cancer and an extremely well thought of "Navigator" program. This could be useful if you need help making your way through the insurance maze or help translating medical jargon.

All the best to your mom and you!

Ray

atleswoolf
Posts: 3
Joined: Aug 2011

Greetings, Ray, Alice, and Kathleen!

Thanks for all of your wonderful and thoughtful comments. Kathleen, you're an inspiration: 11 years out. That's incredible, and wonderful. I don't know the answers to all of your questions, but could try to get answers. I know she had fluid in her abdomen but none around or even near her lungs. And Ray, I will check out Livestrong as well as the Caregivers board here. I just got back from a session at the local wellness center on getting rid of negative thoughts, and it was helpful. And Alice, I teach Victorian and 20th Century British literature. So, a lot of Dickens, Hardy, Wilde, Austen, the Brontes, Virginia Woolf (on whom I'm writing a book), Doris Lessing...all sorts of great writers. :)

Thank you again, all of you.
Cheers,
Drew

stella65
Posts: 146
Joined: Feb 2011

My mum has PPC too, I had terrible trouble coming to terms with it but as time has gone on I have managed to put it more to the back of my mind ( it used to be all I thought about!) It is easier now as mum has finished her chemo and is pretty active and apart from a few tummy troubles she is doing great, she has her 3 month appt at the hospital next week but it is only for a chat and she has had her CA125 test but that was never high anyway so not a good indicator, so fingers crossed the doc thinks she is doing well. I hope your mum does well, you will get lots of support here......... Oh, and I am from England! I don't know where you visited but I live in a place called The new forest, it is beautiful and I am sure helps mum with her well being, she walks her dog everyday and has New forest ponies, maybe it would be somewhere you could visit one day!

SOPHIE333
Posts: 92
Joined: May 2011

I am pleased to her that your mum is doing so well, an inspiration! May I ask what stage she was diagnosed in? My mum has tummy troubles too that keep her in bed a lot of hours a day but we hope she will pass these problems soon. It is caking and adhensions causing her problems.. The chemo does its work though. She was staged to IV, having some acites in her left lung too. Mum also have a lot of anxiety, thining the worst and its hard for us daughetrs to manage and watch her "give up" more or less before even tried hard.. But I hope it will get better as you say and that we all comes to terms with how things are with her cancer diagnosis.

Hope your mum keep feeling better!

Best wishes,
Sophie (half Australian, living in Europe)

stella65
Posts: 146
Joined: Feb 2011

My mum was told she is stage 3, she had a big op prior to chemo and I am sure her tummy issues are due to that, Mum thinks she should have recovered from the op completely by now so I have to keep reminding her that these things take time! She is just wanting to feel NORMAL again and I suppose I can't blame her for that X

CharlieKat
Posts: 1
Joined: Sep 2011

I am a Mom and have been diagnosed and treated for Stage IV PPC. I had ascites and fluid around my lungs. The fluid was the worst as I had to be on oxygen for a couple of months. I started chemo (taxol/carbo), once every 21 days, 3 treatments, then had a radical hysterectomy and omentum removal. The surgeon told me he was initially upset because he wondered if he had made a terrible mistake in opening me up as he could find nothing. There was thickening of the omentum, though, and post surgery microscopic findings of some cancer cells. He considered the surgery an optimal debulking. I had three more chemo treatments after surgery and am now in remission, with what is termed a complete response to therapy. I continued working through the entire course of the treatment and really had no serious problems with the chemo or the surgery. The last chemo left me with a slight neuropathy in my fingers and toes but that is going away. My doctor told me at the onset that this was a "manageable" cancer and attitude was everything. Looking up this disease on the internet is not recommended -- much of the information is dated. I read one study that said there was 100% mortality rate! Guess what? Living has a 100% mortality rate. There are people who are cured with this disease and long term survival is not uncommon. Keep the faith, trust God, and keep on living.

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

Your story is very similar to mine. I am a mum with grown up children. I have stage IV PPC with fluid in my pluerual cavity. That was how I was diagnosed. But I guess that is where the story stops being similar. I never had surgery only chemo the same as you. I live in the UK and they don't often do this type of surgery as they consider it's not curative so not worth it. They are managing my disease with chemo and so far I have had 2 x taxol/carbo and I am now on topotecan.

I do have a very positive attitude and have accepted that my cancer can be successfully managed with chemo to enable me to live a good life.

Hope things go well for you, Tina xx

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

Tina, you say you had two goes on Carbo/Taxol. How long a break between them? Did you have anything else done between them?

As you know I too have only had chemo, the one set of 11 cycles of Carbo/Taxol. In the last few months of it, my CA125 had started to go up so the onc. said that it had ost its effectiveness. I wonder how long can pass before it might regain its effectiveness. I know that others have said that it can have side effects even after not having any for a long time, but so far I've been blessed by very little side effects from it.

Thanks

AussieMaddie

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

Sorry I have not answered your question before now.

I had 8 months inbetween my 2 carb/taxol. I think my doctors like a 12 month break, but he judged that I was fit enough to take it. The thing with carbo/taxol is that it is very toxic to the body and it can have lasting damage if you have too much of it. But you seem to have tolerated it really well. Maybe, because of this so have a similar consitution to me, Topotecan may be effective for you.

As you may have noticed I have just posted about how effective Topotecan is for me, so this could be your next option should you need it.

Take care and lwt me know how you are.

Tina xxxx

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

Thank you Tina for replying.

I'm surprised to find how hard it has been for others to be on Carbo/Taxol because I've had such an easy time of it, but then my luck can't hold up forever. My CA125 is now 250 up from a low of 12, and the last two jumps have been much bigger than the previous ones, so it's just a matter of waiting to see any evident symptoms. When I do, I'm to start on a different chemo. He didn't say which one. I'm just going with whatever he says. I'll be interested to know if he suggests Topocan.

I can't linger tonight.

Sending love to all,

AussieMaddie

MarisaUK54's picture
MarisaUK54
Posts: 41
Joined: Aug 2011

Hello

I was just browsing (it's very late here in London!) but I caught your comments and wanted to say how encouraging they were. It sounds like you mirror my very treatment...chemo, surgery - debulking, chemo, microscopic findings, neuropathy in some fingers and toes, REMISSION....phew!

Now, some six months after treatment has finished, I am a little "all at sea" but reading comments like yours keep me settled and positive.

Thank you,
Marisa

Best Friend
Posts: 222
Joined: May 2011

Well, my mom has Stage IV also. It's so scary and at first i cried constantly because of the shock, and then cuz of the stupid internet info on this cancer. Holy Mackeral. My mom had chemo, than surgery, now she is doing more carbo/taxol every three weeks. We have one more treatment and than they run tests. We will find out her CA125 on Wednesday. A little nervous but i am relieved i haven't lost her already. She has made it 6 months so far. Looking forward to when she can go without the chemo for awhile so we can take a family vacation and enjoy her life. If your afraid come here and everyone will help you!

wanttogetwellsoon
Posts: 147
Joined: Apr 2011

Drew...
Welcome to this board. It's useful because there are people here who either have a primary diagnosis of peritoneal cancer or have it as a secondary condition. Either way, it's hard to get inforation on the net and what's there can be pretty miserable reading. It's all doom and gloom as you are no doubt finding. However, it's true that the prognosis can be influenced by a CA125 reading, whether a patient has ascites (fluid in the abdomen), whether there's fluid around the lungs and so on. It's also influenced by the stage of cancer and the type of cancer a patient has. To be honest, I don't think you're kidding yourself about what the doctor has actually said. The op seems to have gone well, and nor does the cancer seem to be invasive. These aren't the things my doctor told me when I was diagnosed and although I do think some of the doctors I've spoken to have been optimisic way beyond what is realistic for me in general terms for whatever reason, I know that to say that most of a tumour has been removed and that they have the right drugs is a very good sign. The important thing, for me anyway, is to live in the present and enjoy the moment though I found it hard to do at the time of diagnosis because I was too shocked to think properly. There are people here who have had PPC for a long time ...something I wish I'd known before. I send you good wishes.... :)

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