Endometriam Cancer Grade 111C; coping with low survival rate info

1 minute read time.

Wondering how women with Papillary Serous Adencarcinoma with clear cells Grade 111C cope with the poor survival rate they read about when they look it up on the internet?  At the moment it seems there's a 33% chance of survival for us.  Is this your reading? Has it improved? Would like to know more!

I tend to not automatically believe I will be the lucky 1 in 3.  What kind  of presumtious thinking is this:

"Oh of course it's going to be me. I'm so special, so strong, I know how to do this!"  

Fundementally, I don't see why it should necessarily be me, though it could be, of course.  I have told myself that I preferred to try to be realistic and say

"this could be a very long haul and so you would be better to organize your life to be as well as you can, emotionally." 

In those dark days of chemo, post op, I spoke to my new female God, I meditated and flushed out my cancer cells, I found all sorts of internal strengths to feel good about. I worked on dealing with my cancer the best I could,;so if there was a chance of being the 1 in 3, it might just be me

But gradually, through feeling ill for so many months (now I'm on 55th Radio Therapy treatment), I've stopped meditating, stopped vizualizing, stopped delighting in my female god and I've become maudlin.

Until today.  I went to have a head massage and a facial.  I felt good, less mentally tired, prettier, alive, less DIZZY!!!    I enjoyed my lunch, which I don't usually enjoy.

I read the Budwig Protocal,which is helpful, especially the spiritual aspect of it (havent dared tried the diet since I have a nuttritionalist).

Some friends are coming round for a short visit in a few hours. I have wonderful family and friends.I don't know more than this.

The future bothers me.  I can have dreams I enjoy, (for example my youngest son is going to have a baby. I'm going to visit my mother in California and see friends in LA).  Then I experience deep secret  fears which are like bad dreams (mostly financial).  I would appreciate sharing experiences with someone, or others who are also dealing with this roller coaster ride. 

 

Anonymous
  • FormerMember
    FormerMember

    Dear Lorraine,

    Looking at an orange tree, covered in oranges, from the window of the house I'm staying at in th Hollywood canyons.  Delicious oranges.  It's

    all so healthy here in California - we start the day with a 'green drink' and have loads of salads...i'm getting used to it and can feel it's doing me a lot of good (pounds falling off again I think??)...Just a question of getting used to the approach, and of course the lovely weather helps.  I mean who wants a stew in this weather?

    While England freezes, we LA people have glorious sunshine, in fact I'm off to the beach.  Tomorrow I'm going up to be with my Mum in Paso Robles. ,(a bit chillier, but never mind)

    Friends here all say I look really great!  They can't believe I've been so ill...it is a TONIC to put last year behind me.

    It was a huge deal wasn't it, but Lorraine I hardly even think about it these days, so to get away and be here like this is the most wonderful thing.  Who'd have thought life could feel THIS good!!!!

    Just going to make an appointment with a specialist in Endometrtiosis. (through a friend of mine) I'm curious to know more about this cancer and the doctors are so willing to 'talk' in USA aren't they?  I can never get a squeak out of my lot in Rome...and maybe have another smear test while I'm here...maybe.

    I'm not obsessing about it, because I really do think the problem that showed up has more to do with the RT than ill health, but everyone here is so very very cautious...

    How are you?  Hope you are well and happy.  Really happy.

    Lots of love

    Penny xxx

  • FormerMember
    FormerMember

    Hi Penny

    Great to hear that you're having a wonderful time.  You are so lucky sitting in the sunshine and resting.  There's not much chance of getting a sun tan here as the thermometer has been as low as -20 and more snow is forecast.  Hopefully it won't delay our flight on Tuesday.  We are flying into Newark on Continental this time so that we can accompany Mia back.  We return to the UK on 4th March for good.  

    You say that you are still having smear tests - that's interesting because I have had my cervix removed so I don't need smear tests anymore.  You are right to ask as many questions as you can and I look forward to hearing what they say.  

    I wasn't too impressed with my 6 week check up.  No scan, no blood tests and just an internal examination and a few questions asked.  The doctor told me that they don't do routine scans as if the cancer recurs they will only treat it was it's symptomatic. They adopt a watch and wait attitude. I find that a little strange to be honest - what is the point in having 3 monthly check-ups.  I'm going to speak to my surgical oncologist when I have my next check-up.  I go to see him privately, so he may be a bit more forthcoming with information.

    Like you, I am not obsessing about it or even worrying anymore.   I feel really well and have been walking in the snow with my daughters - long walks down by the river and marvelling at the scenery.  It's so beautiful but very cold.

    Continue with your rehabilitation and you will go back to Rome a new woman.

    Lots of love

    Lorraine

    x

  • FormerMember
    FormerMember

    Dear Lorraine,

    I had that appointment with the specialist in LA and he was worth more than his weight in gold...this is our GREAT news.

    You know how, probably deep down inside, we are concerned that our cancer will return somewhere because the recovery rate is so low...the percentages are 25% etc.

    Well, it turns out that Yale University did research on several women who had the same cancer ( in my precise case, its Endometrium Pappillary Serous with clear cells Grade 111C).  The women underwent the exact same surgery I did, had the same chemo (carbo platinol) and the same Radio Therapy.  And they are all well and no cancer return.  At least when the book went to print 32 months afterwards!!!

    Women who either did not have the same op or treatments had a 50% recovery rate, the overall survival rate remains 25% (which includes women who weren't properly diagnozed or treated etc).

    So, my dear ffriend, we seem to be a part of that WINNERS statistic.

    More anon.  I'll be emailing with the specialist and will let you know.

    Right now I'm back in snowy Milan visiting Sam and Dasiy (Daisy is SO pregnant; the baby, who is a girl who, will be called Atia, is due around 22nd Feb), and Sam needs the lap top, so I'll love you and leave you and hope I've really cheered you up.

    bye for now

    love Penny xxx

  • FormerMember
    FormerMember

    Hi Penny

    Great to hear that you got such good news and had a lovely trip to see your mother.  I think they through the book at us (so to speak) to give us the best possible chance of survival, which is all we can really hope for.

    I still feel absolutely amazing and going from strength to strengh.  Absolutely no side effects whatsoever which is totally unbelievable.  I am still wearing my wig as my hair is not quite long enough to go without but I actually quite like wearing it.  I can get ready for work in 5 minutes flat - now that is amazing.  Previously it used to take me over half an hour to dry my hair.  A lady stopped me whilst shopping last week and told me that she really liked my hair.  I just smiled politely and thanked her.  Can you imagine what she would have said if I had taken my wig off and said, "Thanks very much, here you have it", haha.  Her face would have been a picture!!!

    We visited Jenny and Steve in Toronto last weekend and had a wonderful 5 days with them.  It will be the last time we drive up to see them as we fly back to Manchester on March 3rd.  Life is a bit of a whirlwind right now as I've returned to work until we fly back and we are trying to close up the house, give furniture away, etc. etc. Saying goodbye to all our wonderful American friends isn't easy but true friends are there forever.  

    Adios for now my friend and let's hope we both continue on this new healthy road for as long as possible.

    I will email again indepth on our return to old blighty.

    Love and hugs

    Lorraine

    x

  • FormerMember
    FormerMember

    Only me again,

    I forgot to ask if the baby had been born yet and hope everything is ok?

    I love the name Atia - very pretty.

    Love

    Lorraine

    x