CSN Login
Members Online: 10

You are here

Moli at another cross roads and mentally crying out loud.

molimoli
Posts: 514
Joined: Aug 2014

No sounds . no tears  but brain is hollering loud and nuff.  What To do with the reality of  this illness.?

Hello  my sisters, my soul  sustainers  Hello.  Although I hae been on the board  I have not posted  because  my treatment suggestions , rejections,request rejection,  indicisions ,actions and inactions keeps getting in the way, oh what a dizzying whirl wind  this monsterous cancer has bestowed upon me ,dare I say us?   Yes us.   I have read all your recent journeys , happy for some and sad for others . when I mentally  run to the  creator for comfort I ask for showers of blessings for you all  too.  RO 10  Stay strong you are loved.

 

My last few months  went something like this:

January ct scan :   recurrence  2 pelvic nodules both  less than 2cm

March    ct scan:    pelvic  nodules pretty much doubled up.

Oncologist suggestion:         Chemotherapy

Family Doctors suggestion:   Chemotherapy

Nurse Clinician   "                 Chemo

The Butcher, The Baker, The Candlestick maker:  suggestion : CHEMOTHERAPY

My reaction: (  very loud without words)  OH Gaaaad NO, Not This Gift That's  Gonna Keep On Giving  To  Me.    (then with words I heard me say ) no no no  (with no pause, sounding like Amy Weinhouse.) 

My  request  : surgery

Oncologist : Absolutely not. no no no .( her time  to sound like Amy Weinhouse,  geezz !!) .

I then asked for MRI  instead of more  CT  Scans booked for May .

In  the  last year I have had 6 already,That was my arguememt for MRI,,it didn't work , "no" was the order of the month, it seemed.  I didn't show up for ct scans,I cancelled. My Doctors are all very brilliant ,experienced and  caring but I am yearning for more options, more reliable and predictable treatment.They respectfully tell me that they too are yearning for better but this is all they have at this time. It begs the question What's a doctor who really cares , to do with us and our anger provoking dis-satisfaction.Yes it makes me angry that there are no green arrows at the crossroads for us.

Out of frustration at being  in limbo land  I shut cancer down and went back to the business of living for a month. Then last monday I went  to have an EEG test  to address  electrical shocks I have  been having in my brain periodically, for years ,  after the test I got to spend  at least 2 hours just talking with my  neurologist about everything thats going on  with me ., In those 2 hours he was a neurologist  ,father, ,brother, teacher ,he consoled when needed  yet reprimanded when necessary re: my decision to  not tell my family at this time. most of all he opened my eyes to  some reality re: my worry about so many scans. and my refusal to have  more ,also the nature of my cancer, an eye opener.

 

These were his exact words.  " I respect your concern  and  I will not fool you or attempt to unschool myself , yes ct scans can and do cause other cancers but if you get a ct scan related cancer I gurrantee you that the kind of cancer that you have will kill you  way before a ct  cancer gets out of the gate. Do yourself a favor and re book the appointment for the scan " 

 He cried and gave me a hug and  for the first time in this journey I cried for me., I actually cried for me, this time.I didn't cry for my children or my grand children . I cried for me because I get it ,with no sugar coating , yet with no such spoken words from this God sent Chinese doctor that is far removed from my cancer care team at another hospital. I looked in his eyes while he begged me to tell my family and I suddenly understood his unspoken message.   I get it  that I have one foot in the grave and one on a banana peel that is on wet concrete.

 

I am booked for the CT scan for June 24th ,and no one had any trouble with me , yes I did , My oncologist/ surgeon called to say she received a letter from the neurologist ,She wouid not disclose the content but  offers to look at the scans when they are done , and will consider surgery if no further masses are seen , now it's how to keep those masses away .I am at peace with the offer. but not yet doing the no chemo happy dance , because there are sensations in my abdomen that keeps me pondering, overall I feel very well. last night I had a 3 hour walk.

Wishing all of you better health and peace of mind, nuff nuff love.

Kathy G.'s picture
Kathy G.
Posts: 210
Joined: Dec 2012

Moli,

So sorry for what you are going thru...

Your post captured the essence of what so many of us have felt since we started this journey! I always feel the need to say I was 'blessed' - not lucky...that I was so early stage I only needed surgery.

I do not know how you true warriors who deal w/the ongoing assaults of this dread disease cope. It is beyond my comprehension.

Thank God for some of the professionals who still have compassion & bedside manner like your neurologist. I truly believe God works thru them. It appears he provided you w/some level of peace given your situation.

I pray that you can find some peace as you continue down this road. I understand your fears. We have a 34 year old son diagnosed w/what appears to be late stage lung cancer & refused to see a doctor. We have to respect his decision...

 

molimoli
Posts: 514
Joined: Aug 2014

Yes after that talk I am seeing through clearer windows, and reading of the daily struggles some sisters are dealing with ,my glass is definately half  full.  which gives me  quite a bit of peace of mind.  I got my scan date moved to monday, 15th. ,Hoping for no more mets., but is braced. Will update as things unfolds.

 

Very sorry to hear of your son's diagnosis., must be hard for you  to watch,please try to  encourage him to at least have a doctor on board monitoring him.so he wont be constantly getting  new surprises with  each new  symptom, it's better to be informed , it allows for better decisions. Wish I could will this away from that young man,breaks my heart big time. stay strong dear,

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

Moli and Kathy G, please don't misinterpret the lack of comments as a lack of caring by anyone on this board. 

Moli, I read your post and thougth, "dear God, what could I possible say?"  I wish none of us had to find this site.  I know that there have been some breakthroughs in treatment but no absolute cure yet.  Many ladies have read this, I know they have because they tell us how they read but not post, which is FINE, but what can I say??  I think Kathy G said it beautfiully.  Sometimes this is the place we can come and say what we want in a safe place where people truly understand, and all we want is someone to sit and listen.

Kathy G, yes, respecting your son's wishes doesn't mean it doesn't pull on your heart.

I wish peace for all cancer warriors.  It is a battle I wouldn't wish on my worst enemy.  I may not comment on every post, but I do pray a cure can be found to this terrible disease as we lose too many good people too young.

 

molimoli
Posts: 514
Joined: Aug 2014

You have always made the time to encourage ,to inform , to  teach, to share , or simply  to console , we appreciate you and all the other also wonderful women that made this happen  and continue this literal sounding board . we newbies are learning daily what you already know,thanks to you all for sharing.

 

I personally share to learn, to vent, to inform  , to voice  anxieties and fears ,even the secret fears that cannot be voiced, ( just to read that others have them too  is both validating and calming )  to show how different ( or  sometimes  crazy) our views can be  although  we strive for the same goal , to beat this god-awful thing, Cancer.

Re;  Misinterpreting,   It never crossed my mind,but you  brought a smile  to my spirit.,will explain later.

   I have  found the ladies here are inviting and caring  , I too read the posts and most times feel happy or sad about the situations that are expressed without responding , not because I dont care , not at all ,I do care but sometimes after reading the posts  THE WORDS ARE JUST NOT THERE TO EXPRESS THE FEELINGS. AND SOMETIMES  I AM JUST MENTALLY ARRESTED BY THE LEARNED REALITIES  OF THE POSSIBLE ROAD AHEAD WITH ALL THE HICCUPS I JUST  READ ABOUT. THROUGHOUT MY LONG SILENCES PLEASE KNOW THAT I CARE,  I AM HOLDING ALL YOUR HANDS ALL THE WHILE, SOMETIMES TO STEADY ME. 

Re spirit smiling : The fact that you wrote your first sentence in such an apologetic way  speaks volume  about who you are as a person. you apologized for the whole uterine board,  It is your desire to protect and cradle us that caused you to  be concerned about  how we feel about the lack of response.  I smiled with much admiration, without a doubt I know you care.Thanks from all of us on this board and the ovarian board.

Finally , to all the non responders, I declare ,I am not throwing stones ,I live in a glass house.  lol then lol again.

                                                                                                                                                 nuff nuff love, Moli

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I am still pretty new here and don't post very often. I read everything and find it to be a sorce of comfort and education. So often I read the wonderful posts of others and know I have nothing better to add.  I am sad there has to be a site like this, but I am thankful to hear from others in the same boat.  It is hopeful to hear from those who have servived for many years with stage 4 cancer.

Prayers, hugs, and love to all, Lou Ann

Kathy G.'s picture
Kathy G.
Posts: 210
Joined: Dec 2012

No Time for Cancer,

I tried to respond to you yesterday, but the post disappeared when I went to send it...

You make such a good point about many of us on this board that I don't recall hearing before. We read posts...sometimes we lurk, but at least in my case there have been countless times where I just can't find the words to respond to someone's situation. Even something as simple as 'thinking of you' or 'praying' sounds trite...so I don't respond at all. But I sign off feeling awful!

I have had to take breaks from the board just b/c READING the struggles is so overwhelming...I cannot imagine LIVING them!

It is also a good point that we come here just to have a safe place to vent...& have ppl who will listen.

Newcomers in particular need to know when someone does not respond it is not b/c we don't care.

Thank you!

In terms of our son he was diagnosed back in March when he was admitted to the hospital via the ER. He was discharged w/instructions not to smoke, take his meds & keep his appt. scheduled w/the oncologist. He has done none of these things! He has halfway across the country so it is difficult to determine all that is going on. He is in a long-term relationship & girlfriend says she 'tells him' he needs to get to dr., but he makes excuses not to go. It has gotten to the point after several 'heart to hearts' where aside from asking him how he is doing we have decided we need to let it go. He has made some kind of decision to not deal w/it for whatever reasons, and we do not want to make his life hell by harping on it. Still, we do not understand & we fear what may lie ahead for him.

Absolutely heartbreaking!

God help us...we need a cure!

molimoli
Posts: 514
Joined: Aug 2014

He is probably processing it in fear and wonderment .Hope soon he will wake up to the reality like we all had to , so he can make informed decisions.  Too young ,Too sad. He is scared it's understandable. Rocky awful road burying a child that I know very well.  I hope for you added strength.

Yes cure for all cancers Please,Please, pop up in some scientists head, We humbly beg the creator for aid.

                                                                                                                       Nuff Love

artist49
Posts: 87
Joined: Oct 2011

Moli please contact me privately on this site. I would

like to explain some of the things I've done to stay

in remission. Maybe they will help you.

molimoli
Posts: 514
Joined: Aug 2014

I dont know how  to contact privately ,looked around on this site but can't figure out how. Please instruct me . thank you.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

moli, you are kind.  I am just a reflection of everything I have received.

To send a private message just CLICK in the BLUE BOX to the left of the post on "artist 49".  It will pop up her personal page and at the bottom in blue text you will see "Send this user a message".  That way you can chat with each other outside of public view.

molimoli
Posts: 514
Joined: Aug 2014

Bless you , Thanks. Will try.

AWK
Posts: 364
Joined: Mar 2013

I am not quite sure what to say.  I understand your feelings as I have them too from time to time.  I have now been in continuous treatment for just over two years.  It is exhausting at times, draining and overwhelming.  You are doing the healthiest thing by reaching out and participating and venting.  Taking a break from time to time is a good thing.  And being open to the unexpected Angels put in our way to help with pushing and pulling us through the times where we need it the most, like your neurologist.  

I have been lucky even though there are many who probably don't think so.  My down days pass, I rally and continue forward.  I am very focused on living with this and trying to live fully.  I explore clinical trials; have met with many different doctors and been rejected many times.  But then something amazing happens, I meet someone or have an experience that my cancer caused to happen.  And I realize that I have had many amazing things happen because of my cancer that normally wouldn't have happened.  Including meeting the ladies here.  I try to stay open and am an active participant in my cancer as well as my life.  

Be kind to yourself.  Sending you strength for the days you need it, a soft shoulder on the days you need it and prayers that you have some amazing experiences on this journey.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

I am more spiritual then some, less than others. I have not posted in a while- oh, no, it is for reasons that perhaps you may not realise. It is because I sometimes am too busy grieving for you among us with the heaviest burdens to cope with! My heart is just breaking and I am at a loss for words. My soul aches for you, Debra and you, Ro, and you Anne (AWK) and Molimoli and Kathy G. And my soul aches for me , as well, as I am well aware of how precarious my life is.  I only have a small inkling as to how I personally got here. With sooooo much CA in my ancestry it is not a surprise. But really, how did someone like myself - an athlete in great health - get dealt this card??!  I did everything right - great health, normal BMI- and yet here I am. And so I grieve. My onc gyne told me last week that my quality of life will remain "reasonable" for perhaps  2 years or so. OMG-THEN WHAT?? Oh, dear Lord, I am scared to death! Each day feels like  I've received both a blessing and also a curse. Each day brings me closer to my demise. Forgive me for my personal anguish . I am just not ready to lose any of you fine women to this horrible disease. And I am not ready to release my life either.

I pray that each of you find joy in each day and quiet moments of peace.

((((Hugs)))) to each of you,

Cathy

 

 

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

I'm here.  I hear you.  I miss the women we've lost so much and I worry about everyone else.  I, too, take a break from posting sometimes, not because I don't care but because a care too much.  I'm not gifted with words of comfort for you but they are in my heart.  I'm not sure I should even post this.  Don't give up hope.

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

This made me cry!  It breaks my heart to see you in distress for us and yourself!  That doctor had no right to tell you your life has two years to remain "reasonable"!  What nerve!  Our life cannot be predicted by human intelect......that is God's business and ours.  I personally plan to tell death to kiss my rosey red...hand!  I don't have time for that nonsence!  I  I have grandchildren I have yet to meet,old people to care for, kids to raise, and maybe, just maybe, somethings I want to do!  I have heard a quote that "Death is the great Equalizer". well, I think cancer is.  We didn't do right or wrong with this cruddy cancer.  If that were the cas I'll live to 100! I will go when and how the Good Lord sees fit, not one minute sooner.!  Don't grieve Cathy.  Remember the ones we have lost, maybe shed a tear or two, but live!   For everything there is a season and a purpose unto Heaven   Thank you for caring, we all have to step back at times!  Debra

mamamoody's picture
mamamoody
Posts: 28
Joined: Jun 2015

Hey ladies,

My name is Tina and I just joined up yesterday.  I found the site looking for info on uterine/lung cancer.  I like it how many of you can be so honest.  You can't always share those negative feelings with your loved ones or else they'll think you are "giving up".  For me, I'm far from that, but it does get to me sometimes.  Not so much the cancer itself, but the treatment sideeffects.  I just get so tired of hurting sometimes.  I don't know my future beyond the fact that I will eventually die, as all men will, but I'm firm in this conviction ...I'm not going anywhere until God says I am.  My faith in a loving God means everything to me, but I'll do my best to not be preachy.

I pray for you all, and most of all for peace in your lives.

molimoli
Posts: 514
Joined: Aug 2014

Sorry you had  to hop unto this bus  but welcome, we are newbies but if you stick around and read the postings of the older ladies (not  refering to age) you will learn more from personal experiences than doctors even know themselves. Here You will be comforted ,  you will be sad , you will smile ,you will shed secret tears , you will be frightened out of your whits,you will understand ,you will come to terms,you will change those terms ,you will be doubtful, hopefu,l you will have full conversations complete with answers for and against all by yourself. Just always remember, you have sisters riding with you and through it all  we will be with you all the while.

Don't worry about being preachy,So what if you are preachy ,This board is multiculteral,multi denominational,none denominational, athiest agnostics, We all come to take from it that which gives us comfort, hope,  and education  while we respect  and embrace our differences, Joining is not conditional upon us all being the  same , I haven't found so at all. Just be you and feel the hug.

molimoli
Posts: 514
Joined: Aug 2014

Debra I hear your rant  and understand why that statement is  not sitting well with you, as  the Lord has carried you safely , thus far , I get it and respect your views fully ,however  I have had the same "warning"  from several oncologists ,  It shocked and frightened but it helped me with my chronic  procrastination  about this cancer ,hearing it so  frankly put, prompted me to do the best living I can do each day, also to be more proactive with finding ways to fight,

For some of us initially , denial is just a river in Egypt until a doctor becomes brutally  honest  and tells  us frankly  what they have observed and  documented over a period of time ,regarding the usual behaviors  of certain cancers, This cancer with or  without constant and aggressive treatment  will start reaking havoc  on our well being and quality of life, after about  2 years for most people.Thats what I was told . They also told me that there may be a few exceptions , but I must live now as if I already know that I am  not the exception.none of them said I'll  likely die in 2 years just that the going  will get tough.Thats what they know, I took the news with gratitude and started doing, not just promising to do tomorrow . I have a lot of catching up to do as I already died  for far too long. I now take time out. Now is always  a good time for all of us.

You see we really are all different  and looking out of different windows and thats a good thing,  Showers of blessings , my wish for us.

molimoli
Posts: 514
Joined: Aug 2014

Cathy , my sister,In this post I read words you haven't even written,I see your troubled ,heavy laden  heart  in my minds's eyes. Dear God,  Cathy you were there for me and now I feel so helpless now that you are crying out loud .I am just hoping that your courage will be renewed by the break of day You've been in my thoughts all month,I told myself you were on a trip somewhere, it never crossed my mind that you were stumbling and so,so overwhelmed, just know that  it is ok to cry out, I have had my cleansing cry too, we understand all your questions to self that has no answer, we are behind you, also searching for answers as to how this came to be. I sometimes wonder how this particular kind of cancer picked me as recipient. My family is also cancer prone but not this DEMON  that no one alive knows how to deal with.

I know you will dust yourself off  with the help of the creator and get from under the cloud .

Lets also be open to the fact a scientist somewhere could change our lives at any time, therefore, we must keep hope alive.

I am hugging, nuff love, I feel your pain.

Thanks for your prayers.

AWK
Posts: 364
Joined: Mar 2013

I totally get it.  As I have been dealing with various doctors these past couple of months I haven't been posting very much - although I read the posts.  You can feel the pain and sadness of our ladies as well as some of the joys and positivity.  I remind myself that this is all part of a full, rich (not financially) life.  I think the thing that I always remind myself is that I am still living and living fully.  Which you and Ro btw really reminded me of last year.

As to your doctor, I am not sure what to say.  I haven't had that experience with mine; they really feel strongly that this is the journey of an individual.  They encourage my working and riding and we work together on my treatment plans.  This week is the first time my doctor suggested slowing down the work, I have gallstones and will have my gallbladder removed in the next week or so.  A surgical oncologist is doing the surgery and removing it intact.  And honestly, in the scheme of things for me - it isn't a big deal.

I do hope you are out and getting your swims in and traveling.  We should all be making the time to do things we love, now more than ever.  And as to your doctor - I told mine that they needed to believe in me and if they couldn't, then we would have to part ways.  They loved it.  I continue to be a lucky lady.  And you are a huge part of that.

Stay Strong and Thrive.  Sending hugs - Anne

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

Cathy, all the ladies you mentioned, including you, are such lights in all this darkness.  We all need to take a break and I think everyone understands.  I simply could not accept you can die from any of this, so when I first found this site I simply skipped those posts and jumped around.  Like many women, I read and rarely posted.  I was there, I was praying for everyone, but no one knew I was here.  All, of which, is ok.

From what I have seen you are living each and every day.  There is no guarantee of tomorrow for healthy people let alone us. We have been shown how precious life is.  Some people live their entire lives and never know that gem. 

A woman I work with sat in my office after her diagnosis and said, "I don't want to die".  Not everyone can say "I understand" and truly mean it and understand where they are at mentally.

Take a breathe and know that you are loved by many.  Getting a little help is not a bad idea.

molimoli
Posts: 514
Joined: Aug 2014

I have read some of your posts and I cringe at the thought of possible continuous treatment , I can't  fathom  how your body can stand up to the assault over and over again. You are mighty strong in body and spirit. I admire your will to keep on fighting. May the creator continue to strengthen and guide your path and decisions.

It's been an amazing  educational ride with all of you indeed, thanks for the informative posts  and the shoulder ,like Cathy my wings are worn,

 This cancer diagnosis caused me to see beauty in things I hadn't noticed before. Hope to see much more before iI get really sick.

 I am opening my life to all the enriching experiences out there for as long as I can  with as many countries and peoples as I can, that is my resolve.

        Will update on the 30th when I get my scan result, did it on monday.will see oncologist on 30th.                                                                                                                                                         nuff nuff love. 

Hopeful162's picture
Hopeful162
Posts: 82
Joined: Sep 2014

Thank you all for your comments and insight as you respond to each other. I guess I qualify as a lurker, but I so much appreciate what each of you has to offer on this journey and check in to read most every day. Life does take on a new meaning this side of cancer diagnosis, and none of us can truly know what lies ahead. We only have the day and time at hand.

molimoli
Posts: 514
Joined: Aug 2014

Well said Hopeful , I hope you gain as much as I continue to from this Board, The idea of it was brilliant ,The shared journey

 lightens our loads.We must make a resolution to live every day doing things,making plans,laughing ,singing, dancing seeing new things, making new friends,crying out loud when needs be.embracing  and feeling the love.

I was a tumble weed when i found this board ,My free fall was stopped by the wonderful ladies  here. Thanks to them I am now fully engaged in life,comes what may.

I do have my hiccups as you will, but I have gotten into the habit of walking into the children's hospital which is across the

 street from my cancer centre, and always my cup gets suddenly half full., They are infants and young children, I am  62, Thank you my creator, thank you, I like that you gave me notice its all up to me now to  savor what's left of me,(Till I tumble again briefly and run to you guys.) as I continue to hope for NED  for all cancer suffers and all life threatening disease sufferers. Re-newed courage and a surge of strength I humbly ask for us all,We are a family without bloodline,but still a wonderful family,Keeping  hope alive , nuff nuff love.

mamamoody's picture
mamamoody
Posts: 28
Joined: Jun 2015

After reading many of the posts over, I feel I'm starting to get to know you wonderful ladies.  Life is really tough sometimes and dealing with the recurring cancers and problems that come with them can really get us down.  Just when I thought I had this cancer beat, it shows up in my lungs.  Having to go back into chemo was probably one of the hardest things I've done.  I survived it...again.  I almost felt like I was a pro ... losing the hair, sewing more chemo caps .... sharing with "newbies" in the chemo room.  The chemo was worse on my body, but I had the wonderful gift of being able to rest whenever I needed too.  A blessing that I know many don't have...those with jobs and/or children to take care of.  That part is over, now I'm on letrozole/Femara and that med presents a whole other set of issues to deal with.  Overall, I'm thankful to still be around, treatments have gone well.  I have some great docs and support.  One of my pastors once told me "what ever God doesn't deliver you from, He will go through with you".  I'm so thankful this morning.  Have a great weekend.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Connie, Debra, Moli and AWK, I just want to say thank you for all of your support.  I am feeling much better now than I was feeling since I saw my Gyne Onc earlier in the month. I am usually an up-beat type of person and so being depressed is not my normal state of mind.  However, having said that, I recognize that I probably ought to be on an anti-depressant medication.  It is ridiculous to be suffering.  I hope all of you on this Board have a great day!

 

Cathy

AWK
Posts: 364
Joined: Mar 2013

Last fall I went on an anti depressent and it was the smartest thing I have done.  I was very resistant to it and am not sure why in looking back.  Hugs!  Anne

 

molimoli
Posts: 514
Joined: Aug 2014

Cathy you are our loved sister, you are not heavy ,we don't mind catching  your periodic  tumble, no one is counting tumbles , no one will let you fall, Just voice it  ( in  writing) when you feel it ,how you feel it, You don't have to dress it up ,it doesn't have to be pretty, nothing about cancer is pretty. we will all make  acquaintances with depression in one or all of its forms  as we  wrestle with this s..t  Just cry out LOUD  whenever. some one here will have been there ,done that, I guarantee understanding from this board. 

Re; anti-depressant ,if it lifts your spirit a huge part of your battle will be won, If you find it is only keeping company with misery, you can always let it go ,  that you can assess and control, only if you try, good luck..

                                                    I am hugging, nuff love.  Moli.

molimoli
Posts: 514
Joined: Aug 2014

Hello my sisters, Good morning, This is a new  pit stop on  my journey,

THORAX

Scan report : There is no nodal enlargement

                     The pleural surfaces are clear

                      The central airways are clear

                      The  right lung shows no interval change 

                      The Left lung shows no interval change

                       No  interval change is demonstrated

There is no evidence for intrathoracic metastatic disease.

PELVIS :          No liver mass, pancreas,spleen,adrenal glands and kidneys are normal, no hydronephrosis ,no lymphadenopathy.

Impression      The  two Nodules in the anterior pelvis  are larger in keeping with progression. measuring 5.7 x 4.9  (was 3.7 x3.4)

                                                                                                                                             )         3.6  x2.6   (was 3x.2. 2)

            That's the report, I did not get to see my usual oncologist she sent her fellow to talk to me  as they sometimes do . The fellow doctor started off by telling me that "You have many small tumors and 2 large one and we think you must have chemotherapy ,we have to start asap."  I asked her where the many small ones are  she couldnt tell me ,I immediately knew that her job is to frighten me into chemo, I felt Dis-appointed that a doctor would bear false news  to have their program fed . I immediately asked for the oncologist to see me as I needed to discuss surgery ,I knew she was in the unit ,the fellow offered to relay my message to her . The fellow returned to say the oncologist  was busy and that they run a chemo clinic  and since it is obvious that I am not signing up today they can't do anything for me until then,I asked her to  transfer my file to the surgical oncologist that had offered to review and possibly do surgery if there are no other masses found. I again asked where the other many masses are,again the question was side swiped. not a good sign for me, an obvious sales pitch,I asked the success rate that she has seen from the  treatment proposed, she said " 25 % will  gain average 6 months of ned,75 %  we are failing as they will progress through treatment with this kind of  cancer ,all over the world "   for that reason I am out so I told her that at this time  my answer is still no to chemo and thanks for transferring my file to the  surgeon, She was not pleased at all but neither was I.,so we are even, I fully understand that my oncologist is the head of the chemo dept,is very brilliant  with good bedside manners and experienced but  chemo is the business they run,and chemo is the brute I am running from. until such time that it catches me by default.

 

Before leaving the Hospital I  obtained a copy of the report and nothing in it stated that I had MANY ANYTHING. and I am a lot annoyed at the tatics for its smell of dishonesty.

My appt. with surgeon is on the 14th so i'll see. If she can't or won't take the 2 masses before they start compramising other structures I will go hunting for a good surgeon in another hosp., we have many good cancer surgeon and centers in this country.  I am on team Moli,  So my sisters ,how do you suppose I can keep the new masses away for now? any suggestions welcome.

I repeat ,We are all different people and my decisions on treatment doesn't mean yours is wrong ,I may be dead wrong (literally ) but I will be doing the rest of my life my way , Informed, stepping out of the box, opening my mind , living  and fighting..

 

 

 

 

Impression : There is no strong evidence for intrathoracic Metastatic disease.

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

I am so proud of you for standing up for yourself and not being steamrollered.

molimoli
Posts: 514
Joined: Aug 2014

,ConnieSW  Thanks for the support, I will be very busy finding other weapons to fight cancer with , that won't stab me in the back , I may be wrong,very wrong, but I feel right,very right.  I wont be treated like a product on a conveyor belt if I can help it.There may come a time when doctors will have all the say but thanks to the creator the time is not now.until then I will have a lot to say about my care plan..  I am forever grateful for the support that you ladies on this board has given me , even when my decisions are unpopular , Showers of blessings and a stress free weekend.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

Moli, your story sounds very much like chemo thinking they are the only way to help you, which is very offensive.

GOOD FOR YOU to standing up and not taking that.  It is your body, your life.  I think they are so used to people who will just accept it and not question their prescription.

Doctors need to tell us everything.  We are not stupid.  We will make decisions for ourselves.

I am reading, The Emporer of All Maladies, and it amazes me how cancer treatment has developed.  How the surgeons thought cutting more was the cure, and more, and that they were "superior" to the chemotherapists and the possibilities that could do.  They were so closed mind to an overall plan.  And for most of us - this is within our lifetimes.  1973!

 

molimoli
Posts: 514
Joined: Aug 2014

I have found that Doctors that specializes in Cancer care are blinded to any other possibilities of treating cancer but chemo or radiation,,they have invested so much study time and money in these two agents that they cannot make themselves accept that some kinds of cancers are very resistant to these drugs,they fear the feeling or knowledge of failure so  they continue with the samo--samo with no expected outcome, They administer and then  see and deal with what happens, sometimes with devastating side effects.

On the other hand the drug companies are so heavily financially  invested in these cancer research centres  and hospitals that the doubtful doctors would be commiting professional suicide to say  "Ok guys for (some)  cancers we are beating these two dead horses for far too long,lets research some of the other drug combinations that we have been ignoring from other companies and sources, lets pressure the FDA and the powers that be to approve the hundreds of drugs  on hold for approval " They simply can't say that, they don't dare,so they remain powerless and voiceless  against these companies  and have no choice but to give us all the samo samo ,with its poor or none performance , So sad. I have always believed this fact even before cancer found me.and have always thought it to be an awful travesty at the expense of fear filled cancer sufferers..We must take our chances for or against as individuals but full disclosure re: side effects and honest expected outcome must be discussed ,so we can decide if the reprieve is worth the side effects , I am convinced that most people have no clue of the side effects , mild or harsh before they say yes. Yesterday I read an honest  oncologist findings on  ovarian/ upsc cancer treatment and I am further resolved to do surgery and or other treatment only.

Ladies please remember ,these opinions are my own and must not be used to make your decision, we will all be sorry or glad that we have made certain decisions. I have made mine partly because of journeys I have been on with cancer sufferers , I read a lot about cancer and treatments  over the years, in an attempt to help them understand and navigate their journey.  however,I  am only  1year and 6 months fameliar with UPSC  , read a lot  and talked to several doctors about it

Talked to several sufferers of it . Read hundreds of posts on this board about it ,analized it all , thus my decision. I have nothing against chemo for anyone  but myself for the added risk   I expect more from it.    I will form no judgement on anyone who chose this treatment, we are all just trying to do thhe best we can for our own self preservation. Yes thats what warriors do and there are many ways to fight .   Keeping hope alive,nuff nuff Love my sisters . May the creator shelter us fom this storm ,    Have a wonderful 'I Love Me Despite Cancer' weekend    Moli.

 

The Doctors are trapped and we are trapped,God help us all.

Hopeful162's picture
Hopeful162
Posts: 82
Joined: Sep 2014

Moli, if you haven't read Anti-Cancer, A New Way of Life, by David Servan-Schreiber, you might find it helpful with all kinds of suggestions for inhibiting tumor progression. I found it to be very readable with lots of good information.

molimoli
Posts: 514
Joined: Aug 2014

Hopeful, yes I have heard of it, my girlfriend read and suggested it , I will pick it up tomorrow ,I am committed to finding a back door to do cancer my way ,comes what may. all suggestions are welcome. Thanks.

Kaleena's picture
Kaleena
Posts: 1975
Joined: Nov 2009

Moli, I truly understand your frustration.   Right prior to my 5 year mark, I had a new gyne/onc because my original one retired.   I saw this guy several times and still hadn't gotten the warm fuzzy feeling nor did he ever do any of the exams.  He always had his interns do it.   So when I had a scan (which previously this doctor said was fine) reread because the report said I was an 80 year old woman (at the time I was 49), when he got the report back he said I had a recurrence.  I have had a small soft tissue mass that had been there.   I wanted to meet with him to discuss this stuff.  When I got there, all he wanted me to do was sign the paperwork, get a PET Scan, schedule the biopsy and he told me that I would need chemo to shrink it and surgery and that I would end up with a permanent colostomy.    This is the same guy who didn't know where my paperwork was when I got there and never even performed an actual exam on me.   He wanted the biopsy done in two days because he was going on vacation.  Needlessto say I said no.   I still had a port and when I went to get it flushed, they said no you are to get chemo.   I said definitely not.  Just a port flush.   Because I didn't go get the biopsy, he wrote on my chart client seeking help elsewhere.   Also, he wanted me for a study too.

Then I went to another hopsital and had the biopsy which came back positive.  But this doctor used to work with the other one and wanted me back over there.   I had to leave the state altogether because I didn't trust anyone by this time.  I was also told that it was inoperable.

I went to another doctor in another state.  They retested the results which were positive but he said he thought he could do the surgery and a short one at that.  He did the surgery and the mass itself turns out it was benign.  He did find a lymph node that had microscopic cells in it though.   From that day forward, I have been on a wait and see approach.  I did not do any type of treatment. (2010)

Currently, I have another soft tissue mass.   Originally it was 2.6 x 1.6 cm with a SUV of 2.4 (on PET scans) it is now 6 x 2.1 cm with a current SUV of 3.4.   I have had 5 PET scans since last year.  It has also caused hydroureternophrosis for which I now regularly get stent changes for.  I had the mass biopsied in April of 2014 but the part they biopsied was negative.   They couldn't biopsy the part that lit up on PET scans.  They still think it is just scar tissue.

However, my urologist wants to do an implant surgery (removing my ureter and replacing it into another part of my bladder so that I don't have to have stent changes every 3 months).   My gyn/onc now wants to be part of this as he can take a biopsy of this mass while they are in there.   This way we can be sure that it is nothing to be concerned about.

 

I get frustrated because the last 3 PET scans I feel they only cut and paste the results.   I get something like "No significant interval increase"   What does that mean?   Was there SOME movement?   Was there an increase, just not intervally?   And if they say that each time what is the size of it now because they don't give the size?

Also, everytime I go to a doctor with a problem, they want to push drugs right away.   I don't use them unless I absolutely need to.  I want to know the real cause of all my problems, no masked them by taking drugs.  - Sorry for my little rant.

MOLI, I know you want to know what you should do with regard to your masses.   All I know is that the one I have for me to remove it would be a MAJOR surgery.   I have so much scarring that they really don't want to do anything unless they have to.   Have you had a PET Scan?    This can tell whether or not there is active cancer.   You don't want to take chemo if the masses aren't active.  I know they are growing but so did mine.   

Sending you thoughts and prayers that you can find a solution that you are comfortable with.

All the best,

Kathy

molimoli
Posts: 514
Joined: Aug 2014

Thanks for expressing your  journey with its ups and downs so candidly, I have had some ofyour experiences and it rubs me the wrong way.

Thanks to mention the scarring ,I now wonder if they are afraid of cutting into scar tissues,hmm food for thought. I had full and complete hysterectomy, I can just imagine the scarring in there,  maybe thats why the reluctance.,I get it.

 My masses are actively growing all -right, lol.

I have found that pet scan is never suggested  ,I will question why on Tuesday when I see the oncologist / surgeon.for her decision,to do or not to do.

Thanks for your prayers  and your wish that my confusion will take flight,I am working on it

 I have seen surgeries delayed  and the awful and sudden unrelenting pain when the mass infringes on other organs or structures,I dont want that at all.  of course they will then want to do emergency surgery ,when they have watched it grow,  

Live today,thats all nuff love

yamster34
Posts: 75
Joined: Apr 2015

I agree with doing things on your terms! We should make decisions based on being informed, not based on fear. Stick to your decision and may you be comfortable and at peace with whatever happens. 

Amy

molimoli
Posts: 514
Joined: Aug 2014

I hereby declare that I have taken responsibility for my past,do take responsibility for my now and is solely responsible for my tomorrow, I will be at peace with the outcome.

I got this Terminal Cancer but not because of any of my actions.  I will live with cancer,or cancer will leave me ,or, I will leave cancer and it will  certainly be  completely because of my actions. That's  my promise and  agreement with self. I am keeping it.

yamster34
Posts: 75
Joined: Apr 2015

In my opinion, you are showing great strength. You made a decision and stuck to it, despite the Doctor trying to convince you otherwise! Stand strong and wait to see what happens.

Kathy G.'s picture
Kathy G.
Posts: 210
Joined: Dec 2012

Moli,

Your post about them basically trying to sell you chemo was a real eye opener for me. I have shared I was blessed as I did not need any further treatment after my surgery, and therefore never faced w/this issue.

Maybe I am just stupid...I know doctors are hand in glove w/pharmaceutical reps & push pill prescriptions, but the thought never occurred to me they would do the same w/chemo. To me, that is such a travesty...I cannot even begin to express how it makes me feel! It is like the funeral homes who gouge ppl who did not prepare or pre-plan...taking advantage of those in the deepest depths of despair!

I just can't wrap my head around this, but I am so proud of you for being so assertive about your health & choices. However, it just breaks my heart to hear you or any of our other sisters be put in this position!

You did a major service to all who read your posts...we know there are many lurkers who like me may not have had this valuable information.

Thank you for sharing this & I continue to pray for you.

Kathy

Cucu me
Posts: 214
Joined: Apr 2015

Believe it in or not I started chemo on June 17.

Today I noticed my hair started to fall...

Yeah,such a journey we have.

molimoli
Posts: 514
Joined: Aug 2014

It is what we have,  I wish you much success , Try not to be distressed about the hair ,it will grow back for sure.We will be with you all the while just reach out we are huggers, the ladies here are good with breaking falls, hope your low days are few.   HaHa! I don't know about brave. I have seen cancer cause people to eat their words about treatment many times, We may have to redefine brave moving forward, but I am going on a diet I am not eating  any words,we'll see,  OOOOH I NEED JE--SUS. ( eyes rolling up to the sky) 

                                                                                             Feel the hugg. Moli

                                                                                    

Cucu me
Posts: 214
Joined: Apr 2015

I deal somehow with the hair loss.

On Friday is my second chemo, and I don't remember what you ladies said about it...

Is it getting worse or could be better than the first?

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

For me the misererable aching didnt happen but the fatigue was worse.

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

For me, the side effects increased with each treatment, but for many others the first was the worst. Nobody is really prepared for the reality of your hair falling out. I was shocked when I lost my eyebrows and eyelashes! But, with everything else that was happening, I got over it, found some pretty scarves and hats and didn't think about it anymore. Many wear a wig but I found the wig to be hot and seldom wore it.

For me, chemo was miserable BUT each time I went, my CA125 was lower and that gave me the courage to keep going. I am now one year out of treatment and still NED. I know many of us question the value of chemo, but I had, and still do have faith, in my doctor. He changed the protocol when Taxol was giving me increased neuropathy and joint pain, agreed with my decision to do only 3 treatments of internal radiation and no external. In other words, he saw Me and treated Me. We all need to decide how we are going to fight cancer and it is my belief that we need to employ all the weapons we have at hand. Surgery, chemo and radiation are what the medical community offers. That doesn't mean that faith as well as diet and other treatments doesn't work. But, for me, medical treatment works hand in hand with "alternative" treatments and faith in God will support you no matter what choice you make.

Sandy 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

cuculigata, we are all different, and with that said, you are going to surprise yourself when you see how strong you really are.  We are all cheering for you.

Cucu me
Posts: 214
Joined: Apr 2015

Thank you

mamamoody's picture
mamamoody
Posts: 28
Joined: Jun 2015

I've lost it twice in chemo .... head, eyelashes, and eyebrows.  Funny, but the only part that bothered me was losing my eyebrows.  Eyebrows really define your face and I'm not a makeup kind of gal ... so I just did without.  But everything grew back, twice.   Two advantages is that I also lost my "menopause mustache" and I didn't have to shave my legs for awhile.  I guess there's always a silver lining.  Of course, now I'm hairier than ever thanks to the estrogen inhibitor.  :)

 

I'm sorry to hear of some of ya'lls doctor/chemo experiences.  Since being out on "the economy" (outside of military medicine), I've had some great docs.

molimoli
Posts: 514
Joined: Aug 2014

I am going out on a slimber limb without a net , I'll need showers of blessings all day every day.So don't any of you renege on the prayers  , I need it in a bad way.

When I was young  and was defiant with my mother,she would roll her eyes, look at me with  a certain knowing look as if she got the answer to something ,point at me and  blurt out loud  "YOU NEED JESUS "  She was right then but I only know it now,for sure.  R.I.P  Mama G. I get it.

 

Kathy, nothing Happens in health care  without the say so and the go ahead of the multi billion dollar corperations  saying so , They won't ever be willing to let any one else in ,Small Pharmaceutical research companies with brilliant scientists from all over the world is constantly  petitioning and submitting new promising drugs for cancer and all kinds of illnesses  to the FDA  but they are not given the light of day.not even permission to run a trial with willing participants . Why?  Because money talks and talks and won't shut up. No one wants to see their kick backs eliminated because they allow a newbie with  promising  or God forbid positive alternative on the block, no one. Think about it.

UPSC has been around and recognized as different  for many years yet we are still piggy backing on ovarian cancer  so-so treatment, Why, because we are too small in numbers , too distressed about our plight , too timid to upset the applecart of the very people we rely on for treatment to cry out loud enough to be heard.  so they dont have to do thousands of clinical trials for us with new manufacturers when they can just sell us what they already have,Chemo and Radiation combination that is woefully lacking for most.

Oh what a beautiful thought I am thinking,That one day UPSC and all other uterine cancers will be as important as breast and heart or even just as important as damn acne, for crying out loud I am mad as hell.      Nuff love ladies ,I am too pumped so I better go to bed, Yes I need Jesus,

Pages

Subscribe to Comments for "Moli at another cross roads and mentally crying out loud."