My promised update, from Moli.

molimoli
molimoli Member Posts: 514

Hi everyone,  I have not forgotten you, I often read the posts but had no new news to relay. while I waited  to have my follow up scans,

Some of you may recall that I had  total hysterectomy on April 2nd,2014 ,for stage 3  Serous Endometrial Cancer, then follow up scans  on August  28th 2014 with great results, NED .I was cautiously happy and went about living ,

I had a wonderful Christmas with my  girls and grand daughter . it was very low keyed and enjoyable . for the 1st time in 42 years i did not cook christmas dinner ,This time I left that up to my daughters without a fight, I had always felt that if I didn't cook it then it can't be a ' proper' Christmas dinner. I now know that ,that was just  Big Ego  on my part as my once thought incapable daughters cooked a wonderful and different meal without my''  everything must be just so , and in it's place ' drama.  It  was a no stress  no high drama christmas to treasure. Cancer forced me to take things in stride  and quit the expectations  of perfection. my daughters calls it 'going with the flow' although they have no clue how  slow my flow has become. I now know that  Mentally I have passed the baton. and happily so.  It was simply wonderful .My grand daughter's warm hugs made my days, I missed my grandsons  terribly but  they spent the christmas with their father's family.

 

Back to reality , I had my follow up scans on Jan.9th,2015. Today I went to my oncologist for results , As she speaks I heard cancer saying  "HELLO MY FRIEND HELLO  !!

 

 Scans showed all organs unremarkable  No sign of disease.

 

IN THE PELVIS THERE ARE NEW NODULES , 1.7 cm    AND 1.4 CM  ,no ascites.

 

Impression ;  New pelvic nodules consistent with recurrent  disease.

 

My Oncologist will do another case study with a group of other oncologists to see what to do with me . They did one before and agreed on  my requested 'wait and see approach"  so here we are at another cross roads.  There arent many choices though  , as I will only concent to surgery when possible. In the mean time I will have scans  again in eight weeks.

 

I have already  notified my doctors several months ago  that  Chemo  and or Radiation will never be an acceptable option for me.

I personally dont want to commit myself to being very ,very, sick in my quest to prevent  myself from being very very sick.

 

I have decided to opt for quality of life , as I  am in a  ' HURRY UP AND LIVE YOUR BEST LIFE NOW MODE. My inner engine is revving,and there will be no stop signs enroute.

 

I do respect that we are all seeing our journey out of different eyes ,therefore our choice of treatment  must be personal ,mine doesn't mean that yours is wrong , just different as we all hope for the same outcome , NED   This year I'll be taking trips and building  more memories with my family and friends.  I am resolve to do all the things I have always wanted to do ,maybe not in the same way I  had  envisioned it  in the past but in any way I can. That is my resolve.

 

To all the families and friends of the sisters that we have lost I hope in time  like me you will find peace of mind, and vow in their memory to live your lives to the fullest now.

 

To all my sisters who are on this [ our] journey I hope  our CREATOR will intervene and soften the fear of our own Mortality  that  we are so desperately trying to avoid while we forget to live while we are alive.   Walk away from the SHOCK --it feeds sadness, the SELf-PITY - It chases others away,so there will be less people to embrace,  the ANGER-  It eats up cancer fighting energy and  nutrients.      My wish to you all, PEACE OF MIND FOr 2015 and forever,

 

THANKS FOR PICKING ME UP WHEN I FELL. you know who you are, Will update in 8 weeks. Hug yourselves from me ,we are  troopers going up a big,  tall, wide , slippery and steep hill, keep climbing . nuff nuff love.

 

 

 

 

 

 

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Comments

  • Hopeful162
    Hopeful162 Member Posts: 82
    Current chemo regimens

    Molimoli, I am glad you have peace of mind and resolve to live your life to the fullest now, but I am distressed that you are so set on avoiding chemo or radiation to prolong your life. I, too, have serous papillary cancer and had my hysterectomy and staging done this past October 23. Right now I have had two rounds of chemo thus far and what I want to say is that it may not be nearly as bad as you have envisioned. My quality of life is not that affected now and if this is what is needed to give me a longer future, I am willing. With all the drugs to stave off nausea, I have had none. I have had somewhat severe muscle pain, but only for three days each time and my treatments are every three weeks apart. My blood counts plummet, but then go up. I have no hair, but that is the way it is with the carboplatin/taxol regimen that is so effective on serous. My energy levels have not been overly affected either. So, I would encourage you to reconsider your decision, though each of us has to come to their own conclusions ultimately. Good luck with the pelvic nodules and keep keeping us posted.

  • Lisa 00
    Lisa 00 Member Posts: 134 Member
    radiation

    Moli,

    I respect your choices, but I felt I should chime in about the radiation.  I found radiation to be of minimal trouble.  Apart from a little cystitis and slight nausea, it was minimally problematic.  Yes, the chemo was terrible, terrible stuff.  But the radiation was very doable.  Best of luck.

    Lisa

  • survivingsu
    survivingsu Member Posts: 134
    I'm biased :0)

    Hi Moli,

    I appreciate your very thoughtful and candid email.

    I had a rare uterine cancer 5 years ago.  I just wanted to share that chemo, radiation, transfusions, scans, surgery, whatever, are all do-able, especially these days with better chemo, more precise radiation, new research findings, and fantasitic experts.  I am biased, however, because I would not be here these past five years if it were not for these treatment options.  :0)  I know I was truly lucky.

    My very best to you, keep enjoying life, family & friends,

    Susan

  • ConnieSW
    ConnieSW Member Posts: 1,613 Member

    I'm biased :0)

    Hi Moli,

    I appreciate your very thoughtful and candid email.

    I had a rare uterine cancer 5 years ago.  I just wanted to share that chemo, radiation, transfusions, scans, surgery, whatever, are all do-able, especially these days with better chemo, more precise radiation, new research findings, and fantasitic experts.  I am biased, however, because I would not be here these past five years if it were not for these treatment options.  :0)  I know I was truly lucky.

    My very best to you, keep enjoying life, family & friends,

    Susan

    Moli

    Jog my memory, did you have chemo or radiation after your surgery?  I'm not sure if you are basing your decision on prior experience with those therapies.

  • Double Whammy
    Double Whammy Member Posts: 2,832

    I'm biased :0)

    Hi Moli,

    I appreciate your very thoughtful and candid email.

    I had a rare uterine cancer 5 years ago.  I just wanted to share that chemo, radiation, transfusions, scans, surgery, whatever, are all do-able, especially these days with better chemo, more precise radiation, new research findings, and fantasitic experts.  I am biased, however, because I would not be here these past five years if it were not for these treatment options.  :0)  I know I was truly lucky.

    My very best to you, keep enjoying life, family & friends,

    Susan

    No guarantees

    Even with all the treatments available, there is no guarantee that cancer won't return.  But I believe the treatment options have been shown to be effective and once you get through them, your quality of life can be as good as it was before.  They are indeed doable.  And yes, the cancer may come back and it may come back somewhere else or everywhere else or not at all.   The hope, of course, is not at all.    I hope you and your oncologist continue to have a good dialogue and you make fully informed decisions.  It is ultimately your choice that matters and how you want to live your life.  Your holidays sound lovely. 

    What are your concerns about chemotherapy and radiation?  You chose surgery which is a treatment that has its own risks and long term side effects, so I'm thinking it's not that you don't want to have any treatment and there may be some other options available (hormone therapy - actually antihormone therapy - for example).  And there are indeed remissions that just happen on their own.  You hear these stories, but I don't personally know anyone that it's happened to. 

    Wishing you the best as you now face this recurrence and decide on further treatment options.  Please keep us posted.  We support you in whatever your decision may be.

    Suzanne

  • daylady
    daylady Member Posts: 122
    Stay in the game!

    Moli, You are right, everyone has to decide for themselves.  I was Stage IVB in January 2014, and went through surgery, chemo, and radiation....all with almost no side effects at all! I did lose my hair (I had great wigs!) but Chemo and radiation are not anywhere near what they were years ago.  I was NED in July 2014, but in December I was diagnosed with recurrent pelvic nodes as well.  Almost the same as you.  No organ involvement, no major tumors.  I started chemo with the drug Doxil on Jan. 2nd and so far, so good...no major side effects, and this time they tell me I won't lose my hair.  I am using an integrative approach...conventional medicine, coupled with diet changes, exercise (I walk 5 miles a day, everyday) and lots of work on staying positive, upbeat and including God.  I get up everyday and keep putting one foot in front of the other and am determined to live everyday to the fullest. 

    No matter what decision you ultimately make for yourself, make sure that you are not turning something down out of fear, because much of what we fear is in our head.   Being there for yourself and your family is worth the effort and you can do whatever you set your mind to!!  Good luck and I will be holding you in my prayers. 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,035 Member
    Molimoli,
    Thank you for your

    Molimoli,

    Thank you for your candidness.  It is bold and not for everyone.  I love your comment,  "This year I'll be taking trips and building  more memories with my family and friends."

    Too often we say "I hope to someday..." TODAY is someday so you are right to make those memories. 

  • molimoli
    molimoli Member Posts: 514
    ConnieSW said:

    Moli

    Jog my memory, did you have chemo or radiation after your surgery?  I'm not sure if you are basing your decision on prior experience with those therapies.

    Not personal experience.

    No Connie, I refused it then as well.   However,I partly based  my decision  on my many years of experiencing the journey while nursing people through their many different kinds of  cancer journey, although this UPSC  is a different kettle of fish.  I simply hate ' maybe-s  .

     

  • nempark
    nempark Member Posts: 681
    Moli You are Awesome!!!JW?

    Dear Moli, thank you for sharing!  Your writing is awesome and your choice is also awesome.  Go ahead my love, enjoy every moment of the day that our Creator has granted us.  I am a five year survivor and my daughter who was dx with  blood cancer did not survive. My son on the other hand told me outright that should he be dx with any form of cancer will not do chemo.

     To be honest as some on the board have mentioned, I really had no side effects to talk about, chemo was good for me. Obviously, it dosen't work for everyone and not everyone is prepared to go through the treatments. only you can decide which way to go.  I wish you 100% success in which ever way you chose, in the mean time have a blast. Be well, and let us know how you are doing.

  • molimoli
    molimoli Member Posts: 514
    To opinions, nudgings, encouragements, and well- wishings

    Thank you all for your responses every one is appreciated. I will try to give  a broad answer.My decision is contrary to my doctors suggestions, however,they are ok with me going rogue.

    My decision is not based on any type of fear at all.

    I have learnt that the only fear I had is the fear of sudden death, without any kind of getting things in order or goodbyes, having lost a child that way, and feeling the pain for so ,so long,without giving living a thought  for 4.5 years.. I  wished that fear away,I prayed it away.  I think that my creator with mercy  has heard my supplication, introduced me to cancer,

    Cancer rescued me from life halting  grief, causing me to realize that I AM and still alive ,cancer taught me to ache for fulfillment , cancer told me that  time is running out and dreams can still be fulfilled.

    Cancer caused me to get my act together, get my financial and personal business in order.

    Cancer taught me to hug more, embrace others and their differences more, express love more, laugh more, forgive more, make amends when warranted.,

    Cancer caused me to stop seeking perfection in everything ,and accept what is. IN other words cancer gave me back the ME that I  once was and more, before I hated life and the world .

    Therefore, I have said all of that to say this:    I may still die suddenly but it won't catch me unprepared or completely unfulfilled. .I have ' NOW " with unrealized dreams. places and countries to see. I have no time for Chemo And Radiation  with it's timelines and uncertainty. My personality craves more confirmation of expected outcome than my doctors can honestly give .I know they can't .So for that reason I have told them that I am out.except for surgical removal .

    My care team is great and at a world reknown cancer hospital.With oncologist from every nation. Because of my unusual  decision with such an agressive cancer they have decided to use me as a case study subject  and we will  all see how I fare-off doing  UPSC my way. I may not be right or happy with my outcome  but it is ok to be different , I think.

    I hope for everyone here that we will all beat cancer , no matter the method used.  You may all be very right, with great outcomes  but  I  am going to do the Sarah Palin--Rogue. .

    I wish you all the peace that passeth understanding.   OOPS!! to those of you who are wondering  I still havent said a word to any family member ,and don't intend to interupt their lives until I must. My girlfriend is also doing cancer,she chose chemo and I support her decision.I told her from day 1 and made her promise  not to tell her family about me so they won't tell mine.She is a great secret keeper,Thank God.

  • survivingsu
    survivingsu Member Posts: 134
    My treatment

    In case this is helpful to know - I had undifferentiated small cell carcinoma.  My treatment consisted of radiation and chemo simultaneously, then internal radiation, surgery, and follow-up chemo.  Treatment was hard at times, but definitely do-able.

    Best,

    Susan

  • molimoli
    molimoli Member Posts: 514
    nempark said:

    Moli You are Awesome!!!JW?

    Dear Moli, thank you for sharing!  Your writing is awesome and your choice is also awesome.  Go ahead my love, enjoy every moment of the day that our Creator has granted us.  I am a five year survivor and my daughter who was dx with  blood cancer did not survive. My son on the other hand told me outright that should he be dx with any form of cancer will not do chemo.

     To be honest as some on the board have mentioned, I really had no side effects to talk about, chemo was good for me. Obviously, it dosen't work for everyone and not everyone is prepared to go through the treatments. only you can decide which way to go.  I wish you 100% success in which ever way you chose, in the mean time have a blast. Be well, and let us know how you are doing.

    Thanks a million for kind wishes.

    Thanks for your kind words Nempark, I just thanked our creator for your splendid outcome.

    Very sorry about your daughter,I know how that kind of  paaiinn!! feels , it never dulls ,the daunting task is to keep it in control ,it's work in progress and I am winning ,I think, hope the same for you, I pray that your son will never be faced with that decision to make, ever, ever, ever..

    Awsome !! I am stealing that word--CANCER IS AN AWSOME WRETCHED BULLY ,I wish we  had missed our turn to dance with it .I am  dancing out of tune to show cancer whose life it is come what may.

    Bless you and yours. I will for sure post the unfoldings as they happen.

     

     

     

  • molimoli
    molimoli Member Posts: 514

    Molimoli,
    Thank you for your

    Molimoli,

    Thank you for your candidness.  It is bold and not for everyone.  I love your comment,  "This year I'll be taking trips and building  more memories with my family and friends."

    Too often we say "I hope to someday..." TODAY is someday so you are right to make those memories. 

    Some day =Today

    Haha, yes indeed that someday that seemed to be way-way yonder  is  TODAY AND NOW. I am so pumped and so ready. I'll tell you where the word pumped came from in this old woman's vocabulary.

    One day my 5 years old grandson would not stop jumping around ,  I was quite annoyed at his lack of listening skills, So in a voice tone not becoming of a loving grand mother I  shouted: ''Why don't you listen ?  stop the Darn jumping"  his reply word for word------ "I can't   gramma  I am PUMPED , and you better stop saying the bad word" his 4years old brother chimed in , " yes gramma no swearing " [darn is a bad word in his world]   I laughed so hard inside ,my chest was heaving  and lord knows that I got more than an ample serving of chest. , they in turn laughed at me  pointed to my chest and said  "gramma you have jiggley jiggley boobies. . we all roared with laughter.

    Not one to be outwitted,    I took those two buggers for a walk then to the park , kept them there until there knees were jiggley, ,when we got back home nobody moved.goal accomplished,I tapped myself on the shoulder and whispered " creative gramma" beaming with pride. that I outfoxed them.   later after tucking them in bed they both chimed out  'gramma you didn't say sorry  for swearing "   'sorryee guys" I shouted back, They won ,dear Lord,they won.

    The word Pumped became my new best word , I have been feeling it for months.  Yet I 've never used it prior to that without following it up with the word gas.. Thank God for my grand boys its nice to know them.  Hope  I brought a smile to your faces , hope you all  can feel the HUGG wherever you are.

     

  • Abbycat2
    Abbycat2 Member Posts: 644
    molimoli said:

    To opinions, nudgings, encouragements, and well- wishings

    Thank you all for your responses every one is appreciated. I will try to give  a broad answer.My decision is contrary to my doctors suggestions, however,they are ok with me going rogue.

    My decision is not based on any type of fear at all.

    I have learnt that the only fear I had is the fear of sudden death, without any kind of getting things in order or goodbyes, having lost a child that way, and feeling the pain for so ,so long,without giving living a thought  for 4.5 years.. I  wished that fear away,I prayed it away.  I think that my creator with mercy  has heard my supplication, introduced me to cancer,

    Cancer rescued me from life halting  grief, causing me to realize that I AM and still alive ,cancer taught me to ache for fulfillment , cancer told me that  time is running out and dreams can still be fulfilled.

    Cancer caused me to get my act together, get my financial and personal business in order.

    Cancer taught me to hug more, embrace others and their differences more, express love more, laugh more, forgive more, make amends when warranted.,

    Cancer caused me to stop seeking perfection in everything ,and accept what is. IN other words cancer gave me back the ME that I  once was and more, before I hated life and the world .

    Therefore, I have said all of that to say this:    I may still die suddenly but it won't catch me unprepared or completely unfulfilled. .I have ' NOW " with unrealized dreams. places and countries to see. I have no time for Chemo And Radiation  with it's timelines and uncertainty. My personality craves more confirmation of expected outcome than my doctors can honestly give .I know they can't .So for that reason I have told them that I am out.except for surgical removal .

    My care team is great and at a world reknown cancer hospital.With oncologist from every nation. Because of my unusual  decision with such an agressive cancer they have decided to use me as a case study subject  and we will  all see how I fare-off doing  UPSC my way. I may not be right or happy with my outcome  but it is ok to be different , I think.

    I hope for everyone here that we will all beat cancer , no matter the method used.  You may all be very right, with great outcomes  but  I  am going to do the Sarah Palin--Rogue. .

    I wish you all the peace that passeth understanding.   OOPS!! to those of you who are wondering  I still havent said a word to any family member ,and don't intend to interupt their lives until I must. My girlfriend is also doing cancer,she chose chemo and I support her decision.I told her from day 1 and made her promise  not to tell her family about me so they won't tell mine.She is a great secret keeper,Thank God.

    My feelings are all mixed up , Moli

    Moli , I think I get where you are coming from on the one hand; yet on the other hand I want you to do all that you can do to be with your 2 daughters and your grandchildren for as long as possible. They will miss you terribly, Moli, when you are gone. Perhaps surgery or cyber-knife will be acceptable treatment for you?  I don't know, but I do know that each one of us must decide how much cancer "treatment" we are willing to tolerate, not to mention to what extent we are willing to participate in this terrifying roller coaster ride before screaming " I can't do this anymore!".  I have visited this line of thought numerous times in the past 14 months of my life. I adore life and have lived it with passion, but I am no fool. All the positive thinking in the world is not going to prevent a recurrence and I have come to despise it when some ignorant, unknowingly patronizing person says to me " Oh, be positive" as though that will cure me.  Like all humble creatures, I know that I have a limit to how much suffering- both emotional and physical- I am willing to withstand. I have a  50/50 chance of not recurring which even a little boy tossing a penny in the air hoping for heads would tell you are not the best odds. I suspect that I suffer from PTSD as a result of the terror this cancer diagnosis has caused me to feel. Like you, Moli, cancer has changed me but not all for the better. I'd be lying if I said otherwise. I continue to grieve the very real possibility that I may die sooner rather than later. Have you noticed how many women who once posted here no longer do so? Where are they?

    Forgive me for being so negative tonight, but sometimes this is how I feel and I figure you wonderful women can understand my ups and downs. I am normally a happy and upbeat person. It makes me feel sad that someone as vibrant and loved as Moli has to cope with this cancer reality.

    Cathy

  • molimoli
    molimoli Member Posts: 514
    Abbycat2 said:

    My feelings are all mixed up , Moli

    Moli , I think I get where you are coming from on the one hand; yet on the other hand I want you to do all that you can do to be with your 2 daughters and your grandchildren for as long as possible. They will miss you terribly, Moli, when you are gone. Perhaps surgery or cyber-knife will be acceptable treatment for you?  I don't know, but I do know that each one of us must decide how much cancer "treatment" we are willing to tolerate, not to mention to what extent we are willing to participate in this terrifying roller coaster ride before screaming " I can't do this anymore!".  I have visited this line of thought numerous times in the past 14 months of my life. I adore life and have lived it with passion, but I am no fool. All the positive thinking in the world is not going to prevent a recurrence and I have come to despise it when some ignorant, unknowingly patronizing person says to me " Oh, be positive" as though that will cure me.  Like all humble creatures, I know that I have a limit to how much suffering- both emotional and physical- I am willing to withstand. I have a  50/50 chance of not recurring which even a little boy tossing a penny in the air hoping for heads would tell you are not the best odds. I suspect that I suffer from PTSD as a result of the terror this cancer diagnosis has caused me to feel. Like you, Moli, cancer has changed me but not all for the better. I'd be lying if I said otherwise. I continue to grieve the very real possibility that I may die sooner rather than later. Have you noticed how many women who once posted here no longer do so? Where are they?

    Forgive me for being so negative tonight, but sometimes this is how I feel and I figure you wonderful women can understand my ups and downs. I am normally a happy and upbeat person. It makes me feel sad that someone as vibrant and loved as Moli has to cope with this cancer reality.

    Cathy

    A hug for Cathy

    Hi Cathy Thanks for your responding letter,You have always been there for me with  much needed info  and  encouragemnt. true one can think positively as much as we want  it works by giving a level of peace of  mind and nothing is wrong with that but it's pcychological tonic and nothing else., it's good for the head but is woefully useless when it comes to arresting  cell growth,  Yes I too again  reacquaint  myself with and  love life , but as you said, there is this reality looking us in the eyes. and the options are  : find  coping mechanisn or  pity self , the latter sucks the joy out of the life we so love..  We have to keep lifting each other up all the time everytime.  No complete falls allowed on this team.

    Cathy you are not negative you are voicing honesty re: your present feelings and we are understanding and embracing you, no forgiveness necessary . your voiced ups  far outweighs your voiced downs ,we are not tired . you are not heavy ,we will carry you Cathy  we will carry each other, My  sisters with tears tumbling down my face I am saying I am sorry for all our unhappy,angry, tumble weed days but peek through the window the sun may come up tomorrow or the next tomorrow.

    I remember crying because you are so young for this ,now I cry because you are so sad because of this. It will pass my darling it will pass.                                                      

                                                 Moli.                                                                                          

  • molimoli
    molimoli Member Posts: 514
    daylady said:

    Stay in the game!

    Moli, You are right, everyone has to decide for themselves.  I was Stage IVB in January 2014, and went through surgery, chemo, and radiation....all with almost no side effects at all! I did lose my hair (I had great wigs!) but Chemo and radiation are not anywhere near what they were years ago.  I was NED in July 2014, but in December I was diagnosed with recurrent pelvic nodes as well.  Almost the same as you.  No organ involvement, no major tumors.  I started chemo with the drug Doxil on Jan. 2nd and so far, so good...no major side effects, and this time they tell me I won't lose my hair.  I am using an integrative approach...conventional medicine, coupled with diet changes, exercise (I walk 5 miles a day, everyday) and lots of work on staying positive, upbeat and including God.  I get up everyday and keep putting one foot in front of the other and am determined to live everyday to the fullest. 

    No matter what decision you ultimately make for yourself, make sure that you are not turning something down out of fear, because much of what we fear is in our head.   Being there for yourself and your family is worth the effort and you can do whatever you set your mind to!!  Good luck and I will be holding you in my prayers. 

    Staying in the game for sure.

    Hi Daylady,thanks for your reply, we  seem to be mirroring each other, It was jan,2014 when the C word  came for me  but April I had surgery. So we took the bus around the same time, wish we had  missed it. I too prior to cancer  got into the habit of walking !0 km [ dont know how many miles ] daily lost a lot of weight and felt so healthy , the healthiest I had ever felt  in 30 years ,and all the while Cancer was way-laying me around the bend, Funny and sad at the same time.geez! 

    I am also at the gym often and working on perfecting alkaline diet plans , nutritionally I know what is required  but implimenting it every time all the time is a daunting task  , I give it my best shot though. I am happy that you too are embracing ,'every day to the fullest life style' it works wonders for the psyche. Thanks for your concerns and advice ,No I don't fear it I just expect more from it, and less side effects, thats all. Many people have embraced it with good results .I give thanks for that.  Cancer Care is personalize care thats how I look at it. Happy to know you are tolerating it well , I'll be following your posts. and wishing all the  best for you and yours.. as I wish for all the sisters on this and every site.

    It will be good to see how both of us with similar condition and  opposing treatment plans   manage this demon as we journey.  Thanks in advance for the prayers I'll do the same.

  • molimoli
    molimoli Member Posts: 514

    No guarantees

    Even with all the treatments available, there is no guarantee that cancer won't return.  But I believe the treatment options have been shown to be effective and once you get through them, your quality of life can be as good as it was before.  They are indeed doable.  And yes, the cancer may come back and it may come back somewhere else or everywhere else or not at all.   The hope, of course, is not at all.    I hope you and your oncologist continue to have a good dialogue and you make fully informed decisions.  It is ultimately your choice that matters and how you want to live your life.  Your holidays sound lovely. 

    What are your concerns about chemotherapy and radiation?  You chose surgery which is a treatment that has its own risks and long term side effects, so I'm thinking it's not that you don't want to have any treatment and there may be some other options available (hormone therapy - actually antihormone therapy - for example).  And there are indeed remissions that just happen on their own.  You hear these stories, but I don't personally know anyone that it's happened to. 

    Wishing you the best as you now face this recurrence and decide on further treatment options.  Please keep us posted.  We support you in whatever your decision may be.

    Suzanne

    Guarantees, None Indeed

    Hi suzanne,  Thanks for your well thought out reply,  my opinion is that surgery is the lesser of the 3 evils, If it pops up there and it doesn't belong there cut it out  providing that it's reachable and clear margins can be obtained, thats a clear target  with little or no damage to adjoining organs and tissues. healing time is usually minimal . of course providing that I  wake up from surgery  Most people with or without many other medical conditions wake up from surgery with brain intact  for many, many, years ,There are so many checks and balances in operating rooms  ,.has always been that way in our life time, now enhanced  by mind blowing  high technology. A good surgeon , an experienced and recommended anaesthetist  - then no problem . In the remote  sad event that I dont wake up I won't know anything about it.then what? I wont be beating myself up about my decision, that's for sure..

    I have no problems with Some Harmone or anti Harmone Therapy

    Remission is welcome to see me any time, what a big hug I have waiting for that. it's entirely possible for one's body to turn on cancer and starve it to death.

     I am not anti treatment at all ladies I am just always vigilant about pros and cons. I need a satisfactory  reason to have anything done to me,Thats all.

    We are all just trying to out fox Uterine cancer and stay as well as we can to fight. thnx for the support

     

  • molimoli
    molimoli Member Posts: 514

    I'm biased :0)

    Hi Moli,

    I appreciate your very thoughtful and candid email.

    I had a rare uterine cancer 5 years ago.  I just wanted to share that chemo, radiation, transfusions, scans, surgery, whatever, are all do-able, especially these days with better chemo, more precise radiation, new research findings, and fantasitic experts.  I am biased, however, because I would not be here these past five years if it were not for these treatment options.  :0)  I know I was truly lucky.

    My very best to you, keep enjoying life, family & friends,

    Susan

    Biased,

    Hi Susan You have All rights to be because it worked for you. Thanks to the creator for your blessing  it gives  hope,Thanks for sharing , Thats the power of opening up a dialogue on troubling  or controversal  subjects we can inform, querry  ,agree and disagree ,all the while holding each other up  just the same.

     The best of life and times to you too,

  • Double Whammy
    Double Whammy Member Posts: 2,832

    My treatment

    In case this is helpful to know - I had undifferentiated small cell carcinoma.  My treatment consisted of radiation and chemo simultaneously, then internal radiation, surgery, and follow-up chemo.  Treatment was hard at times, but definitely do-able.

    Best,

    Susan

    I get it - where you're coming from

    and I admire your decision for no chemo.  Just last night, I was at a meeting and the topic came up about how a friend of ours was doing.  She has a recurrence of UPSC and is undergoing oral chemo and something else (doesn't matter).   This is her third recurrence.  She has had chemo infusions previously.   I sat there dumfounded as others exclaimed how fabulous she was doing, how she has such a positive attitude, etc., etc.  Well, I'm here to tell you she's tired, she has no appetite, she often feels like crap, organ function needs to be checked all the time,  and she has many down moments, but what she projects is the attitude of doing great.  Heck, she has her hair afterall!  I was sitting next to my friend who is fighting a recurrence of kidney cancer and on oral chemo.  She's tired, she's nauseated (somewhat controlled on meds), has lost 35 lbs.,  her thyroid has gone wonky, she has been in the hospital with pneumonia, she has been anemic, her organ function is checked and most of the time she's not down and out, but she feels not well all the time.  And all of this is based on how they say they feel, not what havoc the treatments might be causing that can't be immediately seen.  The medical profession considers this a good quality of life.  And the public sees it this way as wel.

    I don't know what I'd do if I had a recurrence of either my uterine cancer or my beast cancer or even if I grew a new one.  I have given it thought often.  At my age (67) there is a lot to consider. 

    Wishing you the best. 

    Suzanne

  • flyerette65
    flyerette65 Member Posts: 65

    I get it - where you're coming from

    and I admire your decision for no chemo.  Just last night, I was at a meeting and the topic came up about how a friend of ours was doing.  She has a recurrence of UPSC and is undergoing oral chemo and something else (doesn't matter).   This is her third recurrence.  She has had chemo infusions previously.   I sat there dumfounded as others exclaimed how fabulous she was doing, how she has such a positive attitude, etc., etc.  Well, I'm here to tell you she's tired, she has no appetite, she often feels like crap, organ function needs to be checked all the time,  and she has many down moments, but what she projects is the attitude of doing great.  Heck, she has her hair afterall!  I was sitting next to my friend who is fighting a recurrence of kidney cancer and on oral chemo.  She's tired, she's nauseated (somewhat controlled on meds), has lost 35 lbs.,  her thyroid has gone wonky, she has been in the hospital with pneumonia, she has been anemic, her organ function is checked and most of the time she's not down and out, but she feels not well all the time.  And all of this is based on how they say they feel, not what havoc the treatments might be causing that can't be immediately seen.  The medical profession considers this a good quality of life.  And the public sees it this way as wel.

    I don't know what I'd do if I had a recurrence of either my uterine cancer or my beast cancer or even if I grew a new one.  I have given it thought often.  At my age (67) there is a lot to consider. 

    Wishing you the best. 

    Suzanne

    So many beautiful women on this board!

    You ladies are all beautiful, both inside and out.  Such honesty, such poetry in what you all have written and also very inspirational.  Stage 3A USPC after radical hysterectomy. Positive abdominal wash. I had 6 rounds of chemo and was then referred to the radiologist.  I told my oncologist up front that I was not interested in doing radiation and after talking with the radiologist and having him tell me that the lymphocele I had was "probably cancer" and that I needed 35 external and 3 internal treatments, I pushed for a PET scan which showed no cancer so I totally opted out of radiation and I'm not sorry I did.  Chemo really laid me low.  Although I did not vomit I certainly wanted to and nothing I ate tasted good, but, as you all have said it was doable. I had to have hydration b/c I couldn't eat and drink like I needed to, I lost all my hair, treatment had to be stopped because I got pneumonia 3 times during treatment but I made it.  I was scared to death, as we all are but we do what we must to save our lives so that we can be here for our children and grandchildren.  My husband died when he was 50 and my kids were bereft (did I spell that correctly) when they found out I had cancer.  I figured I owed it to them to fight the fight and rock the attitude.  I had cute wigs and aside from the week after chemo I felt great! We never know how many "tomorrows" we are going to have, all we have is our todays so we need to LIVE and LOVE! Living  and loving are verbs.  I want to do everything on my bucket list starting tomorrow.  I've had two men tell me I'm living my second childhood because I'm trying to live life to the fullest.  Needless to say, they are no longer part of my life.  I haven't got time for naysayers. After you have faced cancer and experienced what all of us here have, only then can you criticize the way I want to live the rest of my life.  I'm going to go in a new direction in 2015.  I'm going to yoga, pilates, zumba my way through the new year so get outta my way if you are going to bring me down. If, when I go back to my oncologist, I am told that I have a recurrence I don't know what I would do this time. Sometimes the cure is worse than the disease.  I have seen several people fight with everything they have, do chemo for years, never grow their hair back and still they pass away.  I've found out that because of chemo we have a higher risk for bladder cancer.  I'm older, more exhausted and have my elderly mother who is dying from lobular carcinoma metastisis to her small intestine. to consider.   I feel USPC will "get me" in the end. With the positive abdominal wash, it's too agressive for it not to recur.  So make peace with God, peace with family and peace with yourselves.  Only you know what is best for you and what you can tolerate.  Peace, blessings and good health to all in 2015.

    Barb