Primary Peritoneal Carcinoma

I wish I had found this message board several years ago, I lost my wife to this disease 22 months ago. Elaine was 47 when she died in March 2006, she was diagnosed in December 2004. We live in Scotland where I believe the treatment of the disease is as good as anywhere in the world. I have read through all the messages on the board and all I would say is that you support the patient as much as possible, if they are positive people you support that, if they need support you give them that support. I think a cancer care group if available to the patient and the family is a great help, when this was suggested to Elaine we were reluctant to get involved but she benefited greatly from the group and the feedback from the group was that they benefited from her. It is a horrible disease as everyone else has testified too and I feel we as a family were treated harshly to loosing Elaine so young but my heart goes out to other people on this board who are even younger. It is a shame that it is so difficult to get information on this cancer however it is very rare thank God, there is worldwide research going on all the time and I would suggest people support there own country's research programs as much as they can so this particular disease can be beaten, I would also encourage any patients to subscribe to any trials there doctor suggests as this is the only way that progress can be made, Cancer is a worldwide problem and needs to be attacked as such so the costs and the resources are spread globally. Elaine was very positive the whole period of her treatment, we entered one of the trials at that time (I say we because it is the whole family who lives through this disease, not just the patient), Elaine went through 6 Chemo treatments followed by a radical hysterectomy followed by 3 chemo's, this too us up to September when we had a wonderful 3 months of treatment free time, sadly the cancer re-ocurred in late December 2005 and she died in the March. We were told once Elaines diagnosis was confirmed in the January of 2005 that the expected survival period for a stage 4 was only 18 months, Elaine only got 15 of which only 3 was treatment free but she never gave up and neither did we and i hope everyone who reads this will also remain as positive as you can, don get me wrong, we had depressed and bad times as does everyone but this wonderful little lady battled harder than I have ever witnessed in my life and I will always be in awe of her wonderful gentle fighting spirit and even though she was feeling terrible herself would still give reassurance to any other patients she met and spoke to. My heart goes out to all patients and there friends and families, all I can suggest is that you stay strong and support each other, make the best you can from the good days and the bad, hold on to what ever faith you have, and know that you are not alone as all these replies testify. Nearly two years on now I still have an unfillable void from the loss of my best friend and partner but life goes on and things do get easier. Make the most of the time you are given and support and love each other. God bless you all and I will think and prey for you all

hi,  im so glad your wife was so strong,and im sorry to hear about your loss. My mom in law is battling this too, however she is in the hospital with some strange virus she picked up due to poor immunity, she is very sick.I wonder if there is any survival rate to this cancer, the doctor gave her 2 years. I cant believe it, there has to be another chemo drug or something, her numbers are in the 50's. Do u have any imput? Thanks, Christine

 

On 1/19/2008 chunt07 wrote:

hi,  im so glad your wife was so strong,and im sorry to hear about your loss. My mom in law is battling this too, however she is in the hospital with some strange virus she picked up due to poor immunity, she is very sick.I wonder if there is any survival rate to this cancer, the doctor gave her 2 years. I cant believe it, there has to be another chemo drug or something, her numbers are in the 50's. Do u have any imput? Thanks, Christine

 

Hi Christine,

I think one of the frustrating thing about this cance is the lack of information, it is very uncommon but the survival rates are extremely poor and patients survival seems to rarely be beyond 24 months though in the US your survival period seems much better than the UK. One of tha major issues to any patient going through chemo is the low white blood cell count leving them ope to infections which then hinders the treatment they need to survive.

All I can suggest is hang on in there with you mum in law which you will already being doing and be as strong as you can be. If your mum in law is ever offered trials I would always say yes, it may not be much help to hr but it may help someone in future.

I have been through all the typical stages that partners and sufferers go through anger, dispair etc but all you can do is hope and be strong for your mum in law. Hopefully medical science will progress with this cancer so that earlier detection can be increased giving the sufferers an increased chance of survival, maybe this is only a problem in the UK but my wife was going through regular checks at hospitla with specialist yet it ook in excess of three months before the cancer was diagnosed.

 Take care and be strong and just know that you are not alone, there are many others fighting this and thinking about you and your family, if talking on here helps feel free, it is always at least someone else to speak to as sometimes the family are not always the best people to confide in.

Take care and god bless you all.

 

Thank you for your support, its greatly appreciated.Doctor talked about a trial  for a year after she went into to remission, he seemed so positive, and told her she would live a long life.I actually found all the disturbing facts on this cancer on the computer.Anyway, thanks again, we will remain positive.Christine

 

On 1/20/2008 chunt07 wrote:

Thank you for your support, its greatly appreciated.Doctor talked about a trial  for a year after she went into to remission, he seemed so positive, and told her she would live a long life.I actually found all the disturbing facts on this cancer on the computer.Anyway, thanks again, we will remain positive.Christine

Hi Christine,

 During the whole time Elaine was fighting her cancer the doctors here were brutally honest with us, it is not always what you want to hear but I think it is better this way than being misled, it can be difficult to find out much about this cancer as it is so rare however there are a number of information sites out there. Obviously the earlier this type of cancer is detected the better the survival rates are, Elaine was not diagnosed until stage 4. As I said again keep your chin up and make the most you can of the good days and look after each other in the bad ones.

Hi, my mom is fixing to be diagnosed with this after her MRI's come back neg. for her breast. Its like they are beating around the bush. Anyway, my mom has been battling dr.'s since May last year. Now we are in Feb tomarrow and still has not been diagnosed or treated. It all started with stomach pains last May. How did your wife start to realize her problems were cancer? To me it seems when your stomach is hurting like my moms was this should one of the things to look for. Instead she was treated for all kinds of stomach ailments. I know what you mean about not enough information out there. Im starting to think because there is only one way ticket. It sucks so bad, it hasnt hit yet. But i know the day is comming when my mom who has always been there for me and all the grandkids will be a very sick and weak woman. I cant imagine life without the woman who brought me into this world. Im glad I found you guys.... Its nice talking to someone who knows this cancer.

 

On 1/31/2008 twithers wrote:

Hi, my mom is fixing to be diagnosed with this after her MRI's come back neg. for her breast. Its like they are beating around the bush. Anyway, my mom has been battling dr.'s since May last year. Now we are in Feb tomarrow and still has not been diagnosed or treated. It all started with stomach pains last May. How did your wife start to realize her problems were cancer? To me it seems when your stomach is hurting like my moms was this should one of the things to look for. Instead she was treated for all kinds of stomach ailments. I know what you mean about not enough information out there. Im starting to think because there is only one way ticket. It sucks so bad, it hasnt hit yet. But i know the day is comming when my mom who has always been there for me and all the grandkids will be a very sick and weak woman. I cant imagine life without the woman who brought me into this world. Im glad I found you guys.... Its nice talking to someone who knows this cancer.

Hi Twithers,

 Elaine was 44 ans in late spring was concerned with her infrequent periods and was referred b her GP to a gynacologist at our local hospital, they started to perform tests but everything the tested came back negative or so they told us, in September Elaine was still attending the hospital, in late Novemebr 2005 she started to put on weight with no obvious reason and in mide december we were getting really concerned, our local GP did nothing really other that talk nonsense to us but Elaine was so bad after Christmas that she was admitted to Hospital where the initial opinion was acute renal failure, the removed 5 litres of fluid from her lower abdomen area and we were given the diagnosis in the first few days of January that it was stage 4 Peritoneal cancer and that the prognosos was poor with an estimate of 18 months, we ot 15. I was angry becuse I always felt that if diagnosis had been sooner then her life expectancy should have been greater but by that time it was too late, i realise it is a rare cancer and difficult to diagnose however there are tell tale signs which a GP should have notices but more so the gynacologist I would have thought should have been aware of the possible issues.

 

All I can say is try and stay positive, it does help, maybe this is not what your mum is suffering from, I pray that is the case, a cancer marker CA125 test seems to be a good indicator in at least 50% of cases of this type of cancer, tests on the abdominal fluid are the main test for the diagnosis.

 

Yes I really wish i had something like this to access when we were diagnosed, your initial feeling is shock so you are not prepared to ask questions, when you think of the questions ou want to ask sometimes it is difficult to contac the specialist to ask the questions, the net and this site in particular are vary useful, please relaise others care and this is a good place to vent off your frustrations and fears. Take care and I hope things go well for you and our mum, stay in touch.

Its crazy how the dr.'s take forever to diagnose this. My mom started in last May with stomach pain and in 98 had breast cancer. So every year she gets her mammos and her C test on her blood. Well last  year she did not because every year its been fine. In May they gave her antibiotics for her pain. Then a couple months later it never went away. Shes had colonascopys and catscans and mri's and every test imaginable to see where this pain was comming from. Then they start seeing things. Ya know, "supsicious" things. Then they start blood testing and find her count was elevated then do biopsy after biopsy on different cysts in the abdomen area. I mean its crazy how long this has been going on. I mean she has been told it could be ovarian cancer to breast cancer to I forgot the other one, she was told it could be in her back lungs and lymph nodes. Come to find out its in her liver, abdomen area and lymph nodes.Not in her back or lungs. Now they are testing her for breast cancer again,. Im wondering why the heck dont they just have a test for this only? So they tell her if its not breast cancer then its this cancer. WTH, do a freaken test. She has most of they symptoms of this plus ovarian cancer keeps comming up under the microscope. So why keep checking her breast, when this doesnt come up. Just doesnt make any sense. Its just so confusing, that they are wasting this time. I feel its just growing and growing right now.

 

 

On 1/31/2008 twithers wrote:

Its crazy how the dr.'s take forever to diagnose this. My mom started in last May with stomach pain and in 98 had breast cancer. So every year she gets her mammos and her C test on her blood. Well last  year she did not because every year its been fine. In May they gave her antibiotics for her pain. Then a couple months later it never went away. Shes had colonascopys and catscans and mri's and every test imaginable to see where this pain was comming from. Then they start seeing things. Ya know, "supsicious" things. Then they start blood testing and find her count was elevated then do biopsy after biopsy on different cysts in the abdomen area. I mean its crazy how long this has been going on. I mean she has been told it could be ovarian cancer to breast cancer to I forgot the other one, she was told it could be in her back lungs and lymph nodes. Come to find out its in her liver, abdomen area and lymph nodes.Not in her back or lungs. Now they are testing her for breast cancer again,. Im wondering why the heck dont they just have a test for this only? So they tell her if its not breast cancer then its this cancer. WTH, do a freaken test. She has most of they symptoms of this plus ovarian cancer keeps comming up under the microscope. So why keep checking her breast, when this doesnt come up. Just doesnt make any sense. Its just so confusing, that they are wasting this time. I feel its just growing and growing right now.

 

I understand totally how you feel, with Peritoneal like many other cancerns the best chance of fighting the disease is idetifying it quickly, I find it astonishing that it is down to the patient or the patients family to kick up hell untill something is actually done, I can only hope that your persistance pays off, keep pressurising them to look into this and check for as many things as they can untill whatever is wrong with your mum is idetified. Remeber Perittoneal cancer is very rare so there is a good chance your mum will not be suffering from it. Keep fighting on and you will get there.

 

I think you have been very brave.  My mum was diagnosed with ppc in Aug and after 8 sessions of chemo has been told that her ca125 is still over 500 and that she hasn't responded as well as was hoped. She is 68. The problem I am having is that I live in Scotland and have 3 school age children and my mum is 300 miles away in England. I can't leave the children to fend for themselves but am feeling dreadful at being so far away.  She has a lot of practical help and I am phoning every day but I really don't know what to do for the best. I have found very little help or support here because of the distance involved