Peritoneal Cancer

Hi Bunny2,

I'm sorry to hear you have a recurrence of your peritoneal cancer.  I myself have melanoma so mine's a different story really but I would be very unlikely to answer your question myself hon as the responsibility of answering I feel should be down to an oncologist.   There's many programmes and stories out there in media land that may contain falsehoods therefore you just don't know what's true or not.  Statistics are certainly available on line from reputable sources so you can learn about the "odds" for the outcome of your stage of disease.  I've read mine but still don't know which bracket I will fall into!

For sure once a cancer has entered your lymphatic system it can now travel via that system around the body and perhaps set up home elsewhere.  Treatments are designed to kill and/or reduce the cancer cells we have and you have already had chemo and Niraparib.  A pharmacist and your oncologist would be the ones to really answer questions about what treatment to try next. 

Cancer cells are sly and crafty little blighters and my feeling is that I just don't know if mine will return just because it was found in the lymph nodes. I will never know til it happens.  So it's impossible for any of us on here to say yea or nay to your question. 

Sorry not to be more helpful hon and I would be asking the same question myself in your position but I think it's a question for your oncologist.  It is their responsibility to share with you where you are in your journey.  Do you have a appointment coming up soon?  If not perhaps the oncologist's secretary can arrange a phone call or a zoom call for you?

I think you are asking a brave question, one (as I said) I would ask too and it needs an honest answer so you can beging to plan for what's next in your life.  Good luck and take care, let us know how you get on. Xx

Hello Alottment lover,

Many thanks for taking the time to reply.  I have never joined any group before, so all this is new to me. 

I agree that I should be asking the questions of my oncologist.  My problem is that I know how extremely busy they are and I have been loathe to take up their time unless something serious was happening to me.  It seems that perhaps now is the time to change that and concentrate on myself for once. 

Thinking it through after watching an extremely thought provoking documentary (which I would not recommend for everyone) I believe the main question I should be asking is what they would do if they or a member of their family were in my position.  This was the question I asked at my first consultation as I did not want to go through with chemo and surgery if I was simply going to die painfully in 2 years time.  I asked my oncologist at that time not to sugar coat things.  The answer was that I had a 50% chance of beating the disease with the treatments suggested, so I obviously took those odds.  Now four years down the line and with the recurrence, those odds have shortened significantly so, as you advise, I need to ask the questions during my phone consult on Tuesday before chemo on Wednesday 8th.  Sorting out my affairs is something I need notice for, so despite finding it hard to actually vocalise my questions, I will type up things to ask and hopefully learn what to do next.

Thank you once again and good luck to you too!  I now know what to do when I get my answers.  xxx

Bunny2 I really feel for you as it's such a difficult stage in your illness but as you say you want the truth so you can be prepared.  Some doctors are very bad at passing on what they feel is "bad news" and may hedge aroung a straight answer but if your oncologist has been truthful before the I hope he/ she will be this time. 

And yes it is time to put yourself first, this is your life and you are in charge and that will I hope keep you strong enough to cope with whatever comes next.  Like you I would want the unvarnished truth so I can plan. At 59 with a 22 yr old daughter I just keep hoping it's not my time yet but we all take life for granted so it's in my head and I want to be practical.  I've chosen a couple of songs to play but I'm not sure I even want a "service" .  Just a big party with 80's music playing mostly, lots of dancing and singing.  And of course cake!

Your questions to ask are not easy and you are courageous to ask them. Your voice will be strong because these are important things to know and it's a good idea to write/ type the questions up beforehand.  Is there anyone who can be with you for after you put the phone down? I truly hope that they can suggest other treatments for you hon but if it is not good news it might be nice to have someone nearby even if they just put the kettle on for tea or pour you a brandy/gin/vodka or both!

T️ake care Bunny2 xxx

• Bunny2 how did your appointment go on the 8th hon?  I hope you got the answers you need to get organise xx 

Oh, I am so sorry "Lottie".  Like the road to hell, I'm full of good intentions, but was wiped out with the chemo on 8th.  It was the third cycle and the nausea and mucositis were quite awful.  Coming round a bit now, but dreading the next.  You were on my list of to-do's, especially as you were so kind with your words of wisdom.

With your advice, I girded my loins and asked my oncologist if my cancer was Stage 4 - she thought it was more like Stage 3, so that was a good start.  When I asked how many lymph nodes were involved, she said the report stated "multiple".  I said I believe that meant it could now travel anywhere it liked and the reply was that my cancer actually doesn't work like that.  Apparently it's not in the soft tissue and could possibly be contained within the abdomen - yay!  Asking if the percentage difference the chemo might make I was told I would have a CT scan (Sat.18th) to determine this so my question was premature.  I then asked what she would do in my position and she replied without hesitation that this is the path she would go down.  All in all I was heartened by the conversation and now just keeping my fingers crossed the leetle beggers are shrinking!  Best info was that "chemo brain" is a thing!!  I'd been blaming the meds, etc. for being unable to even remember the name for a small furry pet that miaows - duh - but now I have an excuse.

I told my oncologist that I needed to know the "unvarnished" truth and that I was organising a Direct Cremation.  I've decided that my loved ones don't need to be present at some cold, wet, graveyard.  They can simply celebrate my life with a knees up.  Also, being a Scot living in Yorkshire, it's 60% cheaper than a conventional cremation and the company takes care of everything, so win/win.

Realise this has all been about me, and I'm really not like that.  I wonder what your story is and how you are at the moment?  Hope you don't mind me contracting your title, Lottie just seemed to suit you?

Have a super day, the sun is shining, the flowers are blooming and we should simply enjoy!

Love & hugs,

Bunny2 xxxxx

Hi Bunny2 and I apologise for my extremely late reply to you.  Time certainly does run away from us.  Brave you asking those pertinent questions, never an easy thing to do but I am so glad your disease is confined and is not a spreading one.  That's is positive news to hear.  How is the chemo going?  Hope your nausea is vanishing hon.

As for "chemo brain" -- of course it's real!  I remember caring for people back in the 80's and seeing chemo brain.  I have it too even though I'm having immunotherapy!  It's just got to be a thing 

I've been looking for the cheapest way to get cremated - just the collection of me and the burning bit is only just over £1000 so doable, yeah! Like you, a party with 70's and 80's music only with a bit of Glenn Miller thrown in, cake and people can share experiences of me aloud.

I've one more dose of my immunotherapy drug on the 22nd August them I'm cast back to the lottery of life with 3 monthly CT and MRI scans.  I'm not going to live worrying constantly about the melanoma returning, that'll be living a half life.  So after a nasty chest first fall on my alottment 2 weeks ago (no broken sternum but hurts so much, can't turn over in bed without pain and should be resting- impossible) I'm trying to get back to normal.

I've my daughter home from university right now, she's struggling but I'm constantly adjusting to her abilities and emotions so it's fine.

Yes the sun is shining but I'm contrary and want rain for my alottment too!

I'm so sorry for not responding sooner to you, some times are tough to get through!   Oooh I hear thunder down here on the south west coast...

Take lots of care and let me know how you're doing xxx

Hi Lottie, no need to apologise, we're both going through tough stuff, so no pressure.  Also, gardens and allotments take up so much of our time and energy at the moment that it can be hard to set aside time for paperwork. Thankfully we've had some blessed rain to water all the plants.

So sorry to hear about your fall and hope you're improving.  Having had a hip replacement 10 years ago, I know all about the pain of trying to turn over in bed.

You should have had your last dose of your immunotherapy drug by now and I've finished my 6 cycles of chemo.  Hope it all went well.  I like your term "the lottery of life" - think it describes how we both feel.  Like you I generally don't dwell on either what has gone or what is to come, I just take one day at a time and try to enjoy it as much as I can. 

I'm trying to get hold of my oncologist's secretary to see if I can have a CT scan before my next consult on 12th October.  The one after 3 cycles showed some shrinkage of the tumours, although she couldn't give me a percentage.  As she thought all benefits had been gained from the first 3 cycles she didn't intend doing another CT, but my cancer antigen continued to fall with the next 3 cycles so I would like to know definitively if it was worth putting myself through those last 3.  My GP told me recently that I have the right to look at my scan.  I would find this extremely helpful so would really like another to compare with the previous 2.

A beautiful sunny day here in the north and I'm about to continue my pottering.  Hope it's nice for you and that your fall hasn't curtailed your activities too much.  Take care, xxxxxxxxxxxxxx