My promised update, from Moli.

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 said:

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

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.

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. 

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.

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

Double Whammy said:

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

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