Newly diagnosed PPC

[Ttucro]

Hello.  I'm still in a shock having only been diagnosed day before yesterday with primary peritoneal cancer. I'm otherwise very healthy  55 year old wife, mother grandmother who loves my life and is now so frightened!  I'm to do 6 rounds of chemo then the cytoreduction HIPEC surgery after.  My husband and daughter keep telling me not to worry, just to go on living every day happily but I seem to be stuck and unable to move forward. There isn't much encourage online or hope for a future.  How do I press on?? I need help!

[Gleedy]

I also have PPC and was incredibly healthy with no symptoms.  I am 53.  I've had 4 chemo.  Op soon then 2 more chemo.  My world crashed in Jan.   I did the worst thing looking on the Internet.   It is full of doom and gloom. I perked up when my oncologist said I was having a curative procedure.  I do know it can return but its no good stewing on that. The lovely ladies on here also helped tremendously and I felt less alone.  I've responded very well to chemo and I am trying to be as positive as I can because I have so much to live for.  I do let myself down some times and feel sad.  I am human. Be strong.  Keep positive and feel free to post when you need.  You will get lovely support.  Tracey xx

[Ttucro in reply to Gleedy]

Thank you for answering. I'm worried about the chemo. Have you tolerated it well? What hospital are you working with for your surgery?

[Millie-c]

Sorry to hear your news, and welcome to the site where no one really wants to be a member. However saying that there are some great inspirational people on here and they give so much support and advice. 

It does take a while for the diagnosis to sink in but once you have come to terms with it in your own way, it will become easier. 

It is a shock when you first find out and I found it the hardest telling my family and friends. They were just as shocked as I'm only 43. I do feel less tearful now everyone knows. The worst was telling my daughter. 

You do get to a point where there is nothing you can do about it now So bring on the fight. I think this is when you have your plan started. 

I remember on the run up to my first chemo I was so scared, what side effects would I get, how would I cope, but on the day, probably due to the steroids I thought that's it I'm coming to kill this cancer and a positive vibe overwhelmed me. The journey had started. 

Everything you are feeling is quite normal and u will av your ups and downs throughout, some days better than others, but what is amazing is you manage. 

You will feel better once your treatment starts and you see it working, your ca125 levels should start to fall and you will be well on your way to beating this. 

Regarding the statistics for this disease. Ignore them. We are all individuals. There are people on here who have beat this and continue to live a full life. I couldn't quite believe that when I first came on this site. 

I was diagnosed 3c ovarian cancer which has spread to the peritoneum at the end of January and have had 4 chemo carbo/taxol, I have had the usual side effects, fatigue, tiredness, insomnia, neuropathy, loss of hair, loss of appetite, loss of weight, anxiety.. . I am due to have surgery on Tuesday next week. It's extensive ultra radical surgery which involves removal of my ovaries womb and tubes and also lifting out my other organs such as liver bowel spleen etc... to remove any sign of cancer. I'm dreading it, but I know I have to have it done. 

Then two more chemos and the finishing line in sight. 

Someone said to me take a year out of your life to deal with this and then move on. The alternative isn't worth considering. 

Take care and any questions yo have don't hesitate to ask. You can do this!!!

[Ttucro]

Best of luck on your surgery, I'll be anxious to follow your recovery!!

[Gleedy]

We all fear chemo.  I remember getting off  the bed.  My first was on a hospital ward to keep a careful eye I think then in the unit which is much nicer.   Anyway I walked out feeling no different.   I expected to immediately feel weak.  I have tolerated it quite well.  No sickness at all.  A little fatigue.  Hair loss which I've accepted more than I ever thought I would.   I have however had mouth ulcers and terrible sore throat.   I got sores on my hands too but they responded well with cream from the unit.  The chemo units are very busy and people tend to be cheerful.  I get well fed on my days  with unlimited coffee and a nice lunch.  Biscuits at all times and if you are there past 4pm they roll out sandwiches.  This may not be the normal.   I'm having my treatment at southend university hospital but op at Royal london as some tumour near my liver.   I have had excellent care.  

I forgot to say last time ask about trials. I get 18 sessions of avastin too which is a drug that stops blood vessels feeding tumours.  It's called ICON 8.

Also my family keep banging on about keep positive.  Come on etc.  It's very hard on them.  They are in denial a bit.  I've heard my daughter cry alone   I've given her space at that time because that's how I feel.   

Also........ NHS supply lovely wigs if you contact your macmillan nurses to make an appt.   Mine was worth 300 and is lovely quality made in Germany.   I paid £25.

I'll stop now.  Feel free to ask x

[dryden1]

Hi, I am so, so sorry to hear your news and like most of us you must be very scared of the diagnosis, treatment etc. I can only empathise with you and say you must be really kind to yourself and keep hoping for the best results. Everyone's journey is individual but there are commonalities and the women on the site are sources of upto date information , inspiration and comfort. I was diagnosed with peritoneal cancer in July 2015  had 3 lots of chemotherapy , then surgery  followed by 2 lots of chemotherapy. Finished in January this year,As far as the chemotherapy was concerned I had carboplatin and taxol. I was in the chemotherapy unit for about 4 to 6hrs   depending how busy the unit was. The chemotherapy nurses were fantastic explaining everything in detail,   The drugs are usually given intravenously and the nurses are really skilful at putting the cannula in. Great to feel you are not alone and that you are not the only one going through this treatment. I had few side effects , never felt nausea , only real problem was on days 4 to 7 of the cycle when I got aching joints and didn't, t feel quite right. I did find hot baths and paracetamol help with the aches and over the period of having the chemo I did get increasingly tired. But remember that was my experience everyone is diffe rent  AS FAR as the surgery was concerned can,t say I was, t scared cause I was but it was, t as bad as I thought it would be and the pain relief was fantastic, I had an epidural which I would strongly recommend. Latest MRI scan in March showed no .disease. Still quite tired and trying to live for the moment and cease the day.SO FORWARD and ON WARDS. Can I say the Nurse specialist and Oncologist that I have are great and I trust them implicitly, do not be afraid of being forceful and assertive in asking for want you want if you are not getting it. I hope I have not give you to much information but sending you positive thoughts

[LittleSan]

Hi, 

Am sure you feel like a rabbit in headlights with the shock especially when you feel well. Four and a half years after diagnosis I still look around the hospital and wonder at all the healthy looking people who are there for treatment.

Soon the shock phase will turn in fight phase which is easier to cope with.  Once i had a start date, i began to think "bring it on to evict the lodgers!". We are all different but I actually found that chemo isn't as gruelling as I thought it would be. 

Hard as it may be, try to allow yourself a short time each day to ruminate and acknowledge your fear then shrink those thoughts to enjoy the present so as not to waste precious time on worrying.   

Try to take each step along the way one at a time and try not to anticipate problems that may not even occur for you. Chemo is scary and no walk in the park but is very doable. Ppc and Oc are harsh cancers but there are ladies on this site who have been around a long time after diagnosis.

At each stage, if problems arise, the ladies (and sometimes gents) will be here to take you by the vitual hand and guide you with sage advice and support. They're a stoic and kind bunch I've found 💜.

Trust your medical team and let them know exactly how you are - they cannot second guess and have many interventions in their toolbox to ease the way though treatment and beyond. 

Sending you a virtual hug.

Sandra x

 

[Chamber]

Hi

I am 62 , and like you a mother,wife and grandmother. Also I was very fit and active

Diagnosed with pic stage 4 last May. Have had 3 chemo,surgery and 3 more chemo. Now on avastin

Still feel this isn't really happening. I try to keep as positive as possible. I keep as active as I can. See friends and family as much as possible

Have found this site invaluable. Just to know there are other very supportive women out there

With very best wishes

Judy x

[Hidden]

Hi TTUCRO, I am sorry you have had to join this site. All the ladies here are very supportive and helpful and really have given you lots of advice etc. I think a Cancer Diagnosis is the worst possible gift we can get because we dont want to hear the word. However, you have got a treatment plan and that is a good place to start. You will find your family may be in denial of a kind. You can only do your best, nothing else. It is hard when every around you sends positives vibes but it also can be frustrating on the patient. I would suggest you find a Maggie Centre or Cancer Support Centre to speak to a trained counsellor. You are the one going through this and your emotions will be all over the place. Once you get into a routine of chemo etc, it will get better. We have all gone through this in one form or another and we have got through it better than we imagined. So take heart and sending you kind wishes

[thesilent1]

Hi, and welcome to our 'club'. I became a member following my diagnosis and surgery in June 13. It is a lot to come to terms with and it will take you a while. Be kind to yourself. Stay away from google. Remember, the statistics quoted are old, things have moved on a bit and keep telling yourself "I am not a statistic".

Try to stay positive, of course this isn't always possible as I myself know only too well once chemo side effects kick in but positivity is, as I was told by one of the surgeons I worked for, a big part of the battle and those who try to remain positive seem to do better. We all fear the unknown but believe me, get one chemo under your belt and the next time you are on the chemo ward you will be the old hand, reassuring other anxious ladies. The chemo ward is busy and there is always something going on to watch.

Make sure you drink lots, wear something comfortable, I tend to stick with jogging bottoms or leggings, no zips, buttons etc to worry about when you have to go to the loo attached to the drip. I take my tablet to play games on, a puzzle book and my crochet, which keeps me occupied and is actually an ice breaker as inevitably I am asked what I am making. I only learned how to crochet following my diagnosis.

Good luck, stay in touch and we will all support you. Ann xo

[January-2016-UK]

Everything seems so strange at first, especially the first chemo. Eventually you learn the procedures and even know down to which days you feel worse than others. I always feel very well the first few days (the steroids) and the days when I have pains in my ankles are always the same. Everyone reacts differently though, I have never felt sick but I have developed peripheral neuropathy in my hands and feet. I had four chemo, then my op, another chemo and my final one is due on Tuesday.

When do you have your first chemo?

[Dollysmum]

It is a horrible shock isn't it. I remember first posting here some months back, terrified and bewildered, just like you now. This is a fabulous place and although I'm sorry for your diagnosis, I'm pleased you found us here. Be very selective as to what you read online, because you'll give yourself nightmares! Cancer Research is useful as are Macmillan, but I found that the most help and support from women (warriors) who have been through it all, is right here.

Be kind and gentle on yourself. You can do this. xxx

[Ttucro in reply to Dollysmum]

You are so right about the online info. It really brought me to a low, low point reading statistics. Done with that now I have you gals. My daughter recorded Surgeons conversation after my biopsies, I keep replaying his statment "I feel optimistic". Thanks for your reply. Blessings to u, Tracy

[valeriel]

I am glad you have found this site as there is so much support here. I don't post very often now but keep up with how everyone is doing. When I was first diagnosed with PPC in October 2013, I just couldn't believe it. The worst time ever was saying goodnight to my little grandson and then heading to hospital for the first of two operations. I just wanted to reply to you as I think that I am one of the success stories but hey who knows what is around the corner! Ops in December 2013 and Feb 2014 - all plumbing gone!! Chemo began in April 2014. Re-acted to Taxol so only had 2 doses of that and lost my hair! Delayed every time due to low bloods and had to have two blood transfusions. Oh and I got swine flu too and was kept in isolation for a week. Only had 5 out of my 6 as they felt there was more risk from the 6th dose than there was the Cancer. It has taken two years to recover fully although I do still fall asleep very easily after a glass of wine or two!! Now I don't think about it every day and most of the time think that I am just like everyone else. My oncologist said that in the first instance we are going for a cure and if it comes back we can treat it. I hang onto those words. The treatment can be really tough but we have no option but to go through it and once you get to the other side life can get pretty much nearly back to normal. I do hope your treatment plan works and you too can once again enjoy life to the full. Val xx

[Ttucro]

Thanks so much for your reply!! I just hang on every word of success stories! My oncology surgeon says he is optimistic that tumors will be very responsive to treatment and then surgery will remove remaining disease. So I pray and pray! I know about grandsons, I have 3 and can't stand the thought of leaving them or my hubby!! Congrats on health, let's keep in touch please!!! Blessings to u, Tracy

[IrishMollyO]

Hi there

Exactly 5 years ago today I got a call from my GP to go to the nearest hospital as a recent blood test was abnormal. Turns out after various tests that the bloated tummy and other symptoms was PPC and not something as innocent as IBS. I cried for two days and as soon as they confirmed it and told me they would be treating me I cheered up and prepared to fight it. I had of course heard of Ovarian cancer but PPC was a new and strange sounding disease. I did not have an operation but was put on 6 months of Carboplatin and taxol. I responded very well to chemo and remained disease free up to this year when I was told I had swollen lymph nodes. I will now be monitored every 3 months and will go on more chemo as soon as the oncologists decide it is time. I cannot help you on the surgery end of it but I believe it is the very latest in treatments if surgery is needed. Lots of other ladies will advise you on that one. As for the chemo keep in mind that those nasty Cancer cells are bring zapped. There are some side effects but for me they were very manageable . You will find that you will recognise a pattern and one week out of three is a good week. Try not to think too far ahead . Just concentrate on each day and rest if you need to . You will have lots of support so take it when you can. I wish you all the best over the next year . You can do it. If you need to know anymore just ask any of us veterans.

XXX

[Ttucro in reply to IrishMollyO]

Thanks so much for the reply and WOW five years sounds fantastic!!! The surgery is the cytoreduction that removes all the cancer they can find then they add the heated chemo to the abdomen to kill and microscopic cells left behind. Luckily it's done just 2 hours from our home at a teaching med center. It's so great to hear from you survivors!! I can feel my confidence rising thanks to you all! Let's keep in touch! Blessing to u, Tracy

[IrishMollyO]

Hi Tracey

I am glad you have got some comfort from our stories. You will find this site great. I only joined it last year. I wish I had known about it before that. The experience of other women is invaluable. I have read quite a bit about HIPEC surgery but as I haven't had any surgery I would not be able to share any experiences . If you need to know anything at all just ask here and you will have many willing women ready to answer including myself. Take care and take one day at a time. Remember the answer to that old question " how do you eat an elephant ? " which is " bit by bit " !

XXX

[Julie40]

Firstly and most importantly stay away from researching this cancer on the Internet. BYes the stats aren't good for PPC but you will hear real life positive and uplifting stories on here.

I was 39 and diagnosed with stage 4 PPC back in March 2014. I had a very poor prognosis but faith, hope and love has got me to this point. Don't live in fear because it will take away the good times. Yes there will be tough times ahead physically and mentally but you will get into a routine on treatment and be able to map your good and bad days. Rest on the bad days and enjoy like to the full on the good days. That's how I try to live.

If you have any questions no matter how basic they are cone to this forum. There is so much knowledge and support from real women that will share their experiences and won't be just a survival statistic. My oncologist said to me at the start even if there was only one person that beat this why couldn't it be me. I cling to that. Take care and although daunting you will find a strength that you maybe didn't realise you had to get you through it xo

[ellseybellsey]

Hi

I was diagnosed back early March with PPC stage 3c, I was like you in total shock and very frightened and came onto this web page and have had tremendous encoutagement, all my family including my husband say the same to me but I understand now they are also very frightened.

I am having my second line of chemo next Thursday and know I have a long journey ahead of me but I am staying very positive especially after reading some amazing posts from very special people.

I always come to this site especially when I am feeling down, and these last few months it's been my rock.

Hugs Ellsey