Hi my mum has had abdominal pain on and off for three years she had an endoscopy and scan nothing showed up. Eventually she had a ct scan and we got the results yesterday which was shocking she has peritoneal deposits. We asked if she could have an operation for it to be removed and was told no as it is spread like butter. The news has been devastating as my dad has just had an operation esophagectomy cancer he now has phoemonia and is in hospital. My mum has been offered chemotherapy and has an abdominal biopsy next week. The doctor was surprised as to how well she looks with this cancer any help would really be appreciated as my mum and dad are very special people is it a cancer that can be kept at bay with chemotherapy
Best wishes
Ale
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Aliollie
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My mum was diagnosed with ppc in October 2016 she is currently having chemo which is working. She was supposed to have an op but the cancer has caused a blood clot so she can't have that at the moment. Once the doctors have a plan in place you will feel better. There are lots of wonderful ladies on this site who have been living with this for a long time.
So sorry to hear that you are going through such a traumatic time with both your parents . You must be emotionally exhausted .
I haven't got Ppc but was diagnosed with stage 4 serous OC that had spread to peritinium with multiple disease . Needed the chemo (carbo / taxol) first to shrink the tumours and then surgery which was successful . So try and stay positive . I know how hard that is . But am sure there are other ladies on this site who have PPC that can give you more information.
Once your mum has biopsies etc her team will be able to discuss a treatment plan . The waiting is always hard but stay strong and try to also look after yourself too .
Sending love and best wishes to you and both your parents .
Am 12 Weeks post surgery and doing well thanks . Did a 6 mile walk at the weekend. Finished chemo and now having a maintainance drug called Avastin every 3 weeks which doesn't have too many side affects . So a rough 7 months but hopefully over the worst.
Re the treatment for peritoneal tumours, that your mum may benefit from, the surgery is 'Cytoredyction', this is followed at the end of the surgery, while the patient is still under general anaesthetic, by HIPEC, this is a heated chemotherapy which is circulated into the peritoneal cavity. My friend had this surgery (11.5 hours of it!) at Manchester Christie Hospital, they also do this surgery at Basingstoke. Maybe your mum could ask about this treatment as its not usually offered to people.
Hi, I got told I had ppc in may 2015, I had three lots of chemo then debulking operation then three more chemo.I have just finished having eighteen weeks of weekly chemotherapy. Had a ct scan in early January this year and it showed up NED meaning no evidence of disease. I know you must be feeling worried and having both your parents suffering from this horrible disease must be heartbreaking. But I was told and the other ladies on this site will tell you the same, that to treat it as a chronic disease. Sending you big hugs and best wishes. Hope this as helped you a little bit. Love Julie xxx
I'm a supporter of someone with cancer and she was told at diagnosis 6 months with chemo, I know how you feel we were all devastated but we're 23 months later and 6 carbo/taxol, 18 Avastin, full hysterectomy, 4 carbo/gem and 1 reoccurrence later my special person's cancer is currently dormant, my point to telling you this is don't let them put a sell by date on her because it's all statistics and please don't go and consult Dr Google it's the worst thing going! There is always hope no matter how far away it seems.
Ale, my wife was detected in Dec 2015, with 3C high grade PPC at age 61. Just six months before this she had undergone a complete round of tests (bloods/USG/physical check) for a bowel malady. However, no one had an inkling to add CA125 to the bloods. A chance meeting with a patho friend of mine prompted us to do her bloods again and he put in a CA125, and BOOM! Subsequent contrast CT scans confirmed the PPC. Without wasting time, we checked out the resources for her treatment plan. Started with debulking aka cytoreduction together with HIPEC, followed by six rounds of chemo (carbo/pacli), IV as well as IP. Chemo completed in May 2016 and here she is now in Dubai living it up with daughter and grandson with NED and in Complete Remission. She has decided to make the most of her residual life, which just now seems as normal as normal can be, esp since the chemo induced peripheral neuropathy has also more or less vanished.
This disease does not manifest classical symtoms and hence is almost always detected only in Stage 3.
Bottom line, stick to the treatment plan strictly and Keep The Faith. I can well feel your current situation and the collective prayers of this lovely Group will help alleviate it. HE always opens a window when HE closes the door.
How lovely to hear such an upbeat story. Well you post has made me feel quite positive as am in same position as your wife. Had same op last June and finished same chemo nearly 4 weeks ago. Found the ovarian cancer when they checked everything after the cytoreductive surgery so hence the chemo back in home town of Nottingham for OC. Mine was same grade 3 and without having the op for my bowel cancer would not have found the ovarian! Previous to this scans kept showing nothing at all, just a rising cancer count for the bowel. Nothing evident for Ovarian. Hope your wife continues with her amazing recovery and I hope like her my neuropathy eventually disappears. Will try some of the suggestions that have been given to me by some of the lovely ladies on this site. x
Your story does give me hope thank you so much for the information and I hope your wife continues to be well I'm going to see if they do HIPEC here in the U.K.
I finished the same chemo regime in October of 2016 and developed neuropathy in feet and hands. I still have it 4 months later with no sign of letting up. Can I ask you if your wife did anything to help the neuropathy go away?
Hi Carol, she refused any sort of internal medication , and so we went ahead with physiotherapy of the hands and feet . She found the magnesium salts? too cumbersome . Fingers got better sooner while the toes took longer. In all, she more or less got rid of Peripheral neuropathy in about 5 to 6 months . She also follows a diet programme from a well known nutritionist so as to keep her weight under control . All the best and hoping that you get free from the pain asap.
I was diagnosed with PPC January 2016. I had 6 rounds of chemo and major surgery. I was told I had a lot of disease in my peritonean but responded remarkably well to chemo. I'm now having Avastin. I'm stable at the moment at enjoying life. A tear ago I was in a very different mental place. Be positive, get a plan of treatment and things will feel different. Xx
I had an operation last June at Christies in Manchester as I had suspected deposits in peritoneum. Only two hospitals, basingstoke and Christies I was told do an operation called cytoreductive surgery. It involves stripping out peritoneum and in my case taking out ovaries, fallopian tubes and womb etc then the area is washed through with chemo fluid for an hour or more. It was after this operation that they found ovarian cancer in one of fallopian tubes, thats another story! Not sure where you are in the country but would this operation be possible. I know I was accepted as I am fit and there was no evidence of anything spread elsewhere. As this is a major op and very lengthy it is only carried out if outcome is positive. Hope this helps. x
Thanks for the info I'm glad that you are ok now do you mind if I ask how old you are my mum is 76 but she doesn't look it the doctor couldn't believe how well she looks for someone with this cancer as we only found out this week she has a biopsy on Tuesday but I asked the doctor if the deposits could be removed surgically and he said no as its spread like butter and there may be a tumour else where and the deposits have spread from that but they couldn't see a Tumor on the ct scan so at the moment I'm a bit confused as it was such a shock for my mum now to have cancer but I have found out that there does seem to be hope thanks for all the lovely people in replying to me best wishes to you x
Hi and I am 72 and play golf walk and quite active, my profile pic was taken on top of Helvelyn about 5 months before discovering had bowel cancer. I had no evidence of anything on scans just raised cancer count that kept rising so my oncologist thought to contact Christies as she suspected could be in peritoneal area. You might have to push for this but if no evidence of spread elsewhere and your mum fit I dont see why they could not contact Christies or Basingstoke. 2 months before my op I had a ct scan in Nottingham that did show a sign of something but turned out not to be related to the bowel, but ovarian cancer and that was a surprise to my surgeon at Christies and a thunderbolt to me. You could ring and get a a private consultation if necessary. A close friend of mine did that as she had similar problem but more advanced unfortunately and they told her that unfortunately it was too advanced and she was too weak from lots of chemo to have the operation. Hope this is helpful. Lots of luck x
Hi i was dx with ppc stage 3c in April last year had three rounds of carbo/taxol chemotherapy, debulking surgery and a further three rounds of chemo, declared NED in November 2016. I am doing well, and always remember we are all different don't go onto Dr Google, as I frightened myself looking at some of the statistics they are very out dated, The ladies on this site will support you and your mum a lot of them have been through this for many years.
Aliollie, like many of the women on this site I had subtle symptoms, went to numerous doctors and was told "You are fine, we see nothing". No one ordered a CAT scan or CA125. Please read my profile for all the details. The most important thing I can tell you is that your mother has an excellent chance of being here for many more years. The chemo will reduce her tumor burden, she'll have the surgery, she'll have some more chemo and she'll be OK. Tesla in Seattle, WA, USA
Just read your post and all the replies. I notice that everyone mentioned having debulking surgery which your mothers doctor has said is not possible. I am probably one of the few people who had chemo only for PPC high grade serous stage 3c . Surgery was not an option when I was diagnosed in 2011. I responded very well to 6 rounds of chemo every 3 weeks. I remained disease free until last year when it returned in my lymph nodes. I was treated with chemo once more and am disease free again. I will be checked every 3 months as it will more than likely return and if it does I hope to have more treatment . I was told to look at it as a chronic condition which can be treated . I hope my reply gives you hope that chemo alone can work. They will confirm your mothers diagnosis after the biopsy plus the stage and grade it is. Do stay in touch and if I can be of any help I will be happy to do so. Take care.
Molly you did well because five years is a good time to have been in remission. My question is, if the disease was PPC, how does it re-appear on the lymph nodes and not on the peritoneum?
I don't know why it didn't come back in the peritineum but I believe it is quite common for it to reappear in the lymph nodes such as in my case , the periaortic nodes. The scan didnt show any change in the peritineum . In some cases they can remove the lymph nodes but mine were too dangerously situated . However I have followed your wife's progress from the beginning and from what I read the surgery was very thorough along with chemo and HIPEC and your wife is now in remission thank God. That is a wonderful outcome and I wish her continued good health
Sorry for delay in reply to your query. As I am not a medical expert I can only explain in my own simple words what I have understood. When I was told first last Mar of swollen Per Aortic lymph nodes of course I looked into it. A message was left on my phone on Fri of a long bank holiday weekend so that concentrated my mind. I read that spread to these nodes is quite common . I know I was told that I was NED every time I went for check ups but I was also made aware that this was a recurring disease and there were no guarantees it would not return . For some women it may never recur but others are not so lucky. For those of us where it does recur we are told to look on it as a chronic disease . From my limited knowledge of the lympathic system I gather Cancer cells can get into the nodes from anywhere in the body . Thank God your wife has been told she is in complete remission and those are words we would all love to hear. I hope I haven't caused more confusion. If I have let me know
Oh no Molly. No confusion here. Just that I was perplexed when they told you that you were NED and then it pops up in your lymphs, without any signs of it on your peritoneum, the primary cause?
Yes, Gauri has been in remission for nine months now but the dread of recurrence looms ominously. So, we have decided to make each day count and thank HIM for keeping her healthy as long as...
I know Naimish. It will be in my list of questions at my Mar appointment. I always have lots of questions but not always getting satisfactory answers . I will keep everyone posted. You and your dear wife have the right attitude. I do believe in the power of prayer so I have an army of people praying for me before each appointment ! God bless you both
Evening molly how are you and how is your mum doing? We had a meeting with the hospital today myself my brother and my mum I had researched as much info as I could , the consultant said there might be a Tumor in the ovary but wasn't sure the main problem is the peritoneal where as I said before he said it was spread like butter. We asked if it had spread to any other organs of which he doesn't think so. I did read that the cancer looks the same as if is ovarian cancer or just in the area of the peritoneal. I have read that some people can have surgery but he said my mum couldn't. I have read that two hospitals in the U.K. Specialise in peritoneal cancer the Christie in Manchester and Basingstoke hospital. I asked the consultant today if chemo could cure it and he said no and it was tonight I thought that chemo does cure cancer so why can it not cure peritoneal cancer. We are waiting for the appointment to see the onchologist so hopeful will then find out more. Do you know why my mum couldn't have surgery and some people can and why chemo alone couldn't cure this as it doesn't seem to have spread to any organs other than maybe the overies and he didn't seem sure on that and can it be kept at bay just with chemo
I have just realised that I never told you my mum had passed away aged 93 two years ago. It was natural for you to assume she was still with us because of the way my reply was written. I do apologise for that.
The important thing now is your mum. I was told that the spread of the Cancer was too extensive to be operated on . From what I gather PPC is not an obvious tumour but little Cancer cells scattered throughout the periteneum , the omentum etc. I know that some women on this site have had surgery along with chemo and some have done very well. For me I became NED with chemo alone. Mine is high grade serous. It is the most aggressive but by contrast it responds very well to chemo. I have sometimes wondered why I didn't seek a second opinion at the time to see if I would be offered surgery but at the time I didn't know enough about PPC. Most of what I learned was from this site and attending patient days. Perhaps you could have a second opinion to put your mind at rest that you have explored all possibilities.
In many ways I am blessed to have had such a long time NED before recurrence without surgery . Women do have recurrences even with surgery. I was stage 3c when diagnosed and have read that PPC is rarely found at an earlier stage. This is why women are told to look at it as a chronic disease which may have to be treated from time to time.
I hope I have been of some little help. I will have my next appt on the 22mar and have quite a few questions to ask when I see my gynaecologist . I will,post anything new I may find out so keep an eye out for my post. I hope I am not too late with my reply but I only picked up your message tonight. For some reason I get some posts a day late. In the meantime if I can be of any help please let me know. In the meantime I will say a little prayer for your mum. Take care
Hi molly thank you for taking the time to reply and please let me know how you get on with your appointment in march can I ask how many years you have lived with this and how long do you get in between a break from chemo and would you say you still have a good life without feeling to bad. Also do you know why chemo doesn't completely kill the cancer is it that the chemo kills it and then it reproduces again then more chemo is given to control it . Hope you don't mind me asking all these questions .My dad is coming home from hospital today he has still a long way to go but hopefully he can now start to improve.
I was first diagnosed in 2011 and after completing chemo I was pronounced NED until Mar of 2016 when swollen lymph nodes indicated a recurrence. My oncologist advised that I should watch and wait until the nodes had swollen a bit more so I finally started chemo in Aug 2016. You will come across the term " watch and wait " which resulted from survey done some years ago . They say the results of the survey showed that treating early as opposed to treating later makes no difference to outcomes. I'm sure I am not alone in finding this difficult to get your head round as the human instinct is to attack this blooming disease as soon as it rears its ugly head ! Some women don't mind as it means they have a longer spell without chemo.
In answer to your question as to why chemo doesn't completely cure it I can only give you my own understanding. As PPC mostly consists of Cancer seedlings and the pelvic area is a large area I'm sure some Cancer cells may well escape being zapped by the chemo. An end of treatment scan may not reveal them so eventually they will get active again. Debulking surgery which consists of removing the uterus , omentum , ovaries etc would mean that area at risk is lessened but there is still a large area of the peritoneum to consider.
As I said Ali all of the above is just my experience and understanding and you would need an oncologist to explain in more detail. I looked over a few more forums and medical websites before I replied to you and there are examples of women with long remissions. I am happy to have had such a long break and I don't mind looking at it as a chronic disease that will need to be treated at various intervals. I feel fairly well but get quite tired. However I am 72 this year so I keep forgetting that I should be expecting some age related symptoms !
I hope I answered your questions and if you think of anything else let me know. I hope your dad gets back to good health and I wish your mother succesful treatment. When it comes to advice on that I have been there and bought the T shirt twice so I will be happy to give you the benefit of my wisdom there. As will many others,
I coped very well thank God and continued with my task at the time of being a full time carer for my elderly mother. The standard treatment is a combination of Carboplatin and Taxol given through an IV line in the oncology day ward. It is every three weeks for 6 sessions and can take over 4 hours as far as I can recall from 6 years ago. Bloods have to be sent to the lab before they go ahead. There are side effects but I found they weren't as bad as I anticipated. The main one is Taxol causes you to lose your hair around the second chemo. For me it was a small price to pay to get rid of this disease. I got fitted for a wig soon after diagnosis and had my head shaved before my second chemo and got my wig the same day. Some women can have achy joints . Constipation is a side effect but your mother will be advised of the best remedies and told to drink lots of water . I never suffered from nausea but some women do and an anti sickness remedy will be in the prescription you get the very first day. She will also be given a number to ring in case she has a problem at home or develops a temperature at any time of the day or night . Neuropathy is also a side effect in the tips of your fingers and toes. For most people including me it is temporary and just a minor nuisance .
I hope I am not overloading you with information but I wanted you to know that it's all very doable and your mother will be monitored closely both during treatment and every 3months after that. You will probably get more hints and information from other women on this site. I wish I had known about this site 6 years ago but it has been invaluable ever since . Keep us updated as we are all so so happy to help . I wish your mother all the best for the future.
No that's really lovely of you to share your treatment with me it really does give me hope my dad is in hospital as he had an esophagectomy the operation has cleared the cancer but has had phoemonia for weeks my mum has been looking after him and now my mum has it and you know how it is putting on a brave face none of this is easy so you have really helped xx
Just make contact any time you need to know anything about this whole scene. Poor you , having to deal with two ill parents. It is difficult enough caring for one. I wish both of them a good response to treatment. Take care
Thank you Naimish for your kind comment. I am just remembering the care and compassion shown to me on this site and trying to share it with a fellow traveller. God bless
I am ppc stage 3c.Nothing showed on scans.Opened me up,too much cancer.Told I was inoperable.Started chemo and tumors started to disappear.I had debulking surgery, then more chemo.2014 Ned for 9 months.1st Reocurence and had same chemo treatments carbo and Taxol. I am almost 12 months in and scans showed possible 2nd reoccurance or scar tissue.CA 125 low.Waiting for next scan early April to see if anything changes.In the meantime enjoying life.Going on vacation and will deal with whatever I have to do when I get back..I was told this cancer is treatable not curable.So reocurence is likely.Was hoping for a longer stretch.I have done well on the chemo.It was the hair loss that was hard on me.Twice! PPC is treated the same as Ovarian Cancer.There are many more chemo options coming out all the time.Stay positive.Take care.💙💙
I'm so sorry to hear about your parents going through Cancer together. Well your a great person for taking good care of them. I'm going to send prayers and love your way💕❤️
I had a similar diagnosis 31/2 years sgo - with tiny deposits covering most of my bowel and peritoneum - surgeon said it looked like I d been sprayed with cous- cous ( ! ) and it was too extensive for any surgery . Mine was high grade aggressive high grade serous peritoneal cancer . I had carbo and taxol chemotherapy , plus avastin as it was inoperable ( worth asking if your mum eligible for that as they have to apply for funding for it first line - its no longer funded second line ) . The chemo put me into complete remission and this was still the case at my last check up 3 1/2 years later . I too looked well at diagnosis - my profile picture was taken up a mountain on holiday a few weeks before my diagnosis . Do hope things go well for your mum . Maybe worth her getting tested for a brca mutation in the future if its high grade serous type - common in primary peritoneal cancer - I tested positive for brca2 - inherited from my Dad , but wasnt aware of any family history of breast or ovarian cancer ,
Which hospital is she under ? Ppc is rare and worth getting opinion from a big cancer centre if you can
Hi Hilary thank you so much for taking the time to reply. We don't know to much about this as we only found out last week and was a complete shock mum has her biopsy this week I have researched hospitals that specialise in this and I found one at Manchester and one in Basingstoke. When we got mums results the doctor said that there might possible be another Tumor and the grain have come from that and gone on the peritoneal I asked if they new for sure if there was a Tumor and he said it didn't show, I also asked if it could be operated on and was told no so we will find out more when the biopsy is done it's such an awful time as my dad has had surgery for cancer and has not been well since November and is in hospital again my mum always so fit has this to face and looking at your picture you also looked so well so must have been a shock for you. Sorry what to you mean by funded first line and second line? Mum is under Basildon hospital which possibly isn't the best what hospital are you under How much chemotherapy did you have before you went into remission and did you cope with it ok. Thank you once again and I hope that you continue to be well xx
It will be really useful to get the biopsy done and find out what type of tumour it is as any treatment will depend on that. There are so many types of tumours , mine was like ovarian cancer which is true of all primary peritoneal cancers , but sometimes cancer in the peritneum can have spread from somewhere else like your doctors say . Once you know that then you can come up with a plan with the doctors and ask for a second opinion if you want at a bigger cancer centre if you wish . Sorry - first line is what they call your first course of chemotherapy when you are first diagnosed . Second line is the second course of chemotherapy you may need if the cancer comes back . My chemotherapy lasted 18 weeks and i was in remission at the end of that . Chemo was tough but manageable , I was just keen to have it to be honest . I was treated locally at Stoke , the only problem with travelling further away for a second opinion is that treatment is tough and travelling to appointments and for chemotgerapy can get very tiring, esoecialky if your Dad is ill as well . Try to take it one step at a time and find out exactly what you mum has wrong first . Thinking of you and your family xxx
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