I need to ask. Is it the treatments we go through to live causing more deaths then the cancer itself

I have not yet started my treatments. And, I agree it is scary. However, I think they do buy us more time. It is my understanding that there is always a few days of angst, fear and resentment with each follow-up post treatment. Because it brings up all of those doubts again. While I can't offer any personal coping experience, I can say that reading the posts from our friends on this board is very helpful. One of my sister's doctors told her.... We all have to die of something.... While we don't get to pick what, how or when we die, I think we must find a way to live with this and thrive. Otherwise, what is the point?  Life is precious.

I'm sooo sorry about your husband. I really do believe that this is as hard on our caregivers as it is for us. Is there an opportunity for both of you to go to a support group? Or get counseling? No one needs to fight this and deal with it alone.

I'll pray for you to find the strength needed to get beyond this part!

Sending lots of love and hugs,

Cindi

And wanted to give it some thought before I responded.  It is a great question and one I think we all mentally are aware of at some point.  I was diagnosed in Feb 2013 although my official Dx was April 2013.  Stage IIIC UPSC.  I have gone through the extensive surgery, six carbo / taxol treatments, 28 radiation, three brachytherapy and at my first three month checkup mets were found.  My disease was now defined as progressive due to lack of NED.  a couple of things or ground rules we decided upon at that time.  I was ready to fight but I needed my doctors to believe in me and the fight.  They did and one reminded me we are a statistic of one.  I have a certain quality of life I wanted to maintain, interest in living with cancer was my goal and still is.  They agree.  I am open to trying anything with the goal of the effects being temporary; but when the treatment starts overrunning the disease and can't be controlled then we move on to something else or nothing.  Finally, if the disease continues to progress we keep searching and use this to  Benefit others but we stop if the disease can't be stabilized.

i have been treated with Doxil, avastin separately until new progression occurred.  Stability has been the main thing for me over the last 18 months with new growth resulting in new treatment.  I am now in a clinical trial again with the first goal of stability, second goal of reducing the disease.  My doctors are very clear on my wishes and as I moved to this new dr my oncologist made him aware of our ground rules.  It is all about quality of life for me.  And yes I get sick from the treatments but I do recover and see friends, ride my horse, see family and live fully.  I just went on a leave of absence last month from work but worked from December 2013 until July 2015.  

it has been hard on my husband and took time for him to learn that I need his input, understanding and participation.  Some days he would like to just ignor all of it and others he is mad or upset.  He is grieving I think.  but he is wonderful too.  

I have never asked about statistics nor prognosis.  One of my doctors told me I am a statistsic of one and I agree. He has always treated me, the person, not the disease.  

Sending hugs and prayers.  It is your journey!  Anne

Editgrl said:

A valid concern

Like Anne, I wanted to let this percolate in my brain before I responded.  Though I am new to my own cancer journey, I have shared the journey with my mother, my ex-husband, 2 boyfriends, a friend.  Looking back, I saw some treatments that I now think were unnecessary, futile and had a negative impact on the quality of life that remained.  I also saw treatments that reaped years of new experiences and memories that wouldn't have been possible otherwise.  

I truly believe that we are on the cusp of new treatments for cancer that are less virulent than what we have now.  In 15 years, maybe sooner, I think cancer treatment will look very different than what is the current standard of care in the US.  But we are not there yet.  So what to do in the meantime?  For me, personally, I think it is a matter of weighing the bad against the good. I am not looking forward to chemo, and the prospect of pelvic radiation scares the hell out of me, but at the moment, chemo seems to be a way to at least buy some time.  At each point in the treatment, I have the option of stopping, re-directing or continuing on. We must never forget that we do have that power and control, no matter what our doctors say.

One of Anne's ground rules resonates with me:  "When the treatment starts overrunning the disease and can't be controlled, then we move on to something else or nothing." Where that point is is something everyone has to decide for themselves.

I hope you continue to fight to live a good life, with or without cancer.

Chris

Following surgery I made the decision after one dose of chemo that it was not for me. I had a very indepth discussion with my oncologist. My blood levels before dose two showed dehydrated kidneys, so the dose would be reduced, however something did not feel right, so I arrived armed with many questions. I asked was the chemo a risk in itself, she said of course because it is effectively poisoning the cells. I asked if I was tumour free could the chemo create new ones, she said yes. I asked if the chemo could kill me she said yes. I also asked how many people who refuse chemo go on to live a good life, she said not enough people refuse to warrant a study. That most prefer to follow advice and many want anything rather than nothing. So I said I would take a chance. I have had three years with a good quality of life, disease free. I now have a raised CA125 level but the scan shows no recurrence. I am awaiting a further CT scan to confirm. I would not have given up those three years even if I had the chance again, because there are no comparisons to determine whether chemo actually makes enough of a difference to risk it.

I know we are all different and if I hadn't read everything I could and evaluated the good and bad I probably would have jumped on the roller coaster.

Just my thoughts

LA

Lily_Anne said:

Following surgery I made the

Following surgery I made the decision after one dose of chemo that it was not for me. I had a very indepth discussion with my oncologist. My blood levels before dose two showed dehydrated kidneys, so the dose would be reduced, however something did not feel right, so I arrived armed with many questions. I asked was the chemo a risk in itself, she said of course because it is effectively poisoning the cells. I asked if I was tumour free could the chemo create new ones, she said yes. I asked if the chemo could kill me she said yes. I also asked how many people who refuse chemo go on to live a good life, she said not enough people refuse to warrant a study. That most prefer to follow advice and many want anything rather than nothing. So I said I would take a chance. I have had three years with a good quality of life, disease free. I now have a raised CA125 level but the scan shows no recurrence. I am awaiting a further CT scan to confirm. I would not have given up those three years even if I had the chance again, because there are no comparisons to determine whether chemo actually makes enough of a difference to risk it.

 

I know we are all different and if I hadn't read everything I could and evaluated the good and bad I probably would have jumped on the roller coaster.

 

Just my thoughts

 

LA

Lily Anne, I too  had surgery 1 year and 4 months ago, I refused radiation with absolutely no second thought about it, I also refused chemo with,very, very last resort thought in my mind.Then 9 months after surgery mets showed up in my pelvis ,I spent many months fighting to have them taken out surgically but oncologists refused with not much info re:reasons, I now have a buyable  possible reason which changed my mind about surgery some .However !st oncologist told me only about 25% of the people may get  periodic reprieve from taking Chemo and or radiation.The other 75% will progress  Not good enough result for me. I will get result from  scans done last week and will see what happens next based on more mets or not.

I have not read about anyone else that refused both line of treatment. I admire your courage,I really don't know if we should be tapping our own shoulders or if we should be fixing to cry.I have always hated  the chemo's side effects on my family and friends and vowed against it  long before my cancer reality but wow ! do we just not do anything  I am big on quality of life ,since this is not curable shouldn't I just enjoy life  and try other treatments that is less harsh on my system? this question is a constant in my head.

I remain  respectful of the fact that many ladies here are benefitting  from their treatments in many different ways. even just the peace of mind knowing that they are being proactive  and doing their best to fight with the only tools offered by the powers that be , in other words they chose not to be sitting ducks. For what it's worth, I pray that we'll all be  blessed with remission for many more years. I know it's only one brilliant scientist away. Heads up, stay strong.

                                                                                                               Nuff love -Moli

molimoli said:

Thanks for posting Cleo

I am now really curious  about others on the board that has not had the usual treatment.I hope you stay ned always.  I really dread  stripping my body of all it's defences ,then say" fight"

Every worrier needs a warrior -comforter.I wish your hubby renewed strength and peace of mind. Blessings. Moli.

There is no evidence to confirm that chemo post surgery will delay a recurrence. The board that I belong to on Health Unlocked sees many women who have had surgery followed by chemo with recurrence in a very short space of time. There is research that says chemo can delay the onset butthere is also research that sees no difference in time scale, this was on mice though! Iguess our bodies all react in different ways, but I honestly don't believe your reluctance to have treatment is reflective of your current disease.

I wish you well in your fight, are you following the rainbow diet, taking Tumeric and having mindfulness sessions?

LA 

Cucu me said:

glad,you mentioned the diet

If we could do a survey,then we can answer our questions.

Like:

Member: cuculigata

Surgery: yes

Chemo: yes,still

Radiation: no

Recurrense: not, yet

Diet: organic, no dairy, no eggs, meat only fresh chicken, fresh fish allowed, some supplements

Dx: endometrial adenocarcinoma, stage4, grade 2or3, April 2015

 

If someone can make it in a table and we just to fill in it'll be easier.

What do you think?

Excellent idea , I spent all of last night trying to figure out the best way to get a comparison . I really do need to know how each member of both groups are doing.I am not technically savvy so will ask in a new thread. Right heading for that thread I dont have yet so still thinking . Anyone?

On the other hand what will such a survey do to the psyche of someone going through treatment currently,had treatment already or even the refusers if it turns out that we have missed the 'saving grace boat' one way or the other the mental fall out may not be worth doing such a thing.I left the new thread idea alone last night because I don't know how this can be done without causing added distress.  Just wondering.opinions are required and welcomed.

Blessings, Moli

Cucu me said:

we are looking for answers...

and no one is tellling us the truth, all sides of that business are in debt of us,the cancer patients.

We live in distress anyway.

If we can get a better picture we'll know beter what to do.

I'll give you simple example with the diet.

Doctors say eat everything you want, naturalists say don't eat this and this and this...

I'm confused and starving and scared.

This is the place where we get information, understanding and support.

So, what's wrong with my idea? It's not going to be exact, I don't expect such a thing...

We will all together find a way to address this with frank and honest discussions . ATTENTION:  Ladies the idea is out, say something.

Cuculigata,  indeed this is a very confusing,frustrating and seemingly life long disease but it's navigating  treatment options  and nutritional routes that is most distressing  and.threatening to make us crazy., I  understand ,I am living it. We mustn't underestimate the economic side of cancer treatment or mis-treatment (take your pick) and the monopoly that goes on in board rooms.So then, for us Peace of mind is scarce and fleeting.I hope we will all find a way to make it stay.  Plenty hugs and nuff nuff love.

May the Creator comfort us while we wait . Moli.

Yes go ahead SAY SOMETHING please.

TeddyandBears_Mom said:

Input

Just like everything else we are dealing with... There is no right or wrong answer. Because we all process information in our own way.

I'm responding this morning while I feel generally lousy from my chemo treatment on Thursday. I don't hurt. I just don't feel good. Fatigue is an interesting animal!

While I'm sure there are those in the medical field out there for the money, I believe that  most are in it to help us. I think it is hard on us because there are no exact answers. Meaning that we all react differently to the drugs. Which makes it hard for our doctors to give us absolutes. Very frustrating. I also know there are some horrible people out there posting things that scare us and make us doubt our treatments. And, sometimes it is hard to stay focused and on point. I have gone back and forth on my decision to have chemo, but continue on; based on the trust I have in my doctors. And, I don't want to ever look back with regrets on should have, would have....

So, while I am not totally comfortable with putting the data together, I am willing to participate. Like Moli, I am a bit concerned that it may cause angst for some of us going through this.

Something else... If someone isn't comfortable with the direction of their medical team, would a second opinion be something that could help ease the doubt?

Finally, from a nutritional perspective - We all have our level of what we consider healthy eating (or not). I'm taking the approach that I was in excellent health when this cancer was discovered so I must be doing OK for my body. I am chosing to not alter my diet except to increase the good stuff like fruit and veggies.  If someone wasn't in good health, then perhaps a diet change would be beneficial.  BTW, I eat more sugar than I should. But now, I don't want it so much and the better food satisfies my hunger better. The thought of eating a cookie makes me gag. Very strange.

My Two Cents,

Cindi

in an effort to understand, I've read more about why cancer is the "Emperor of All Diseases". I understand why-unabated - it is lethal . We can't cure the common cold! Cancer is so much more complicated than that. I read somewhere that it is more than 1 disease. The question I have asked myself is how is it even possible to kill cancer without killing the person who has it. After all, cancer is not a foreign entity growing inside a person- genetically, it IS the person.

I have been wondering about yamster as she has not posted since July. She chose not to have surgery or any other treatment. I know she wanted the Lord to cure her stage IV cancer. It saddens me to think about what may have happened to her.

Warm Wishes,

Cathy

Annabella Rose asked a question that is very relevant to her.    If we do not discuss and debate....however 'horrible' we as individuals may find some postings, experiences and opinions..how are we going to learn?  We are so individual that people react in different ways.

Cucu me said:

Connie,

I like what you say. One day chemo, radiation, etc. will seem barbaric.

For now we don't have many choices and we try desperately everything that might help. I just feel we are left alone on our destinies.

Despite of our families, doctors, friends and all the help we get because no one knows cure.

The diet and the sport help just because the environment nowdays is enormously polluted and our immune systems are weak.

The rest is just good luck or bad luck.

I wish good luck to all of us.

And I better stop think too much and enjoy every single day as you ladies taught me. Easy to say...

Forgive me if I sound too pessimistic, I can not forget, that the ancient egiptians called the cancer with word, that means "uncurable".

 

 

but we will be grateful for long remissions and hope for changes in current status. That's what I/We aught to be working towards , I personally won't muddy my thought process by thinking cure for this disease, It can't be promised by any sane doctor or oncologist. My thinking of a cure,  with the medecine  we have currently is to be in denial that I have UPSC. The current treatment will keep it in check for a while for some people and some not at all  The thought provoking Question here is, despite chemo's and radiation's   risks  and  side effects, is it worth the time bought ? Would I have had the same time if I tried less toxic route and be able to enjoy life's  scenery. For me I know the answer, however,circumstances alters decisions , I have always  been cognisant of that fact so I live my life with an open miind on most things, but never anything as baffling as this ole (lots of very bad words ) -crap.

Cuculigata you did nothing to warrant apology or forgiveness. You cried out loud voicing  your feelings of fear and frustration over this situation you  perceive to be out of your control.You have opened a very needed discussion although  out of frustration (and hunger, lol, yu too funny) comes this tough subject that we must address openly less it chews away at us,alone.

I have done the very same thing,crying out loud,  except like my tumors I was aggressive ,  aggressively  ( in my mind) hating Doctors ,scientist,Medical investers ,pharmaceutical companies ,FDA ,food manufacturers,Governments,you name it, I was an equal opportunity hater.I was not in control of my body and didn't like the sitting duck feeling so I was wrestling it away from cancer and all the people associated with it. I am now fully acquainted with my cancer and have gained control,not of the cancer's behavior but my reaction to it.

Just know we are thankful for your input ,anything, anytime,   we are hugging , wishing you less worry, nuff courage and renewed strength. Eat something forbidden and live.

Moli