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are we better off not knowing?

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

Hello my csn family.i kind of need some opinions on something that i was going to do when i found out in feburary 2013 that i had 38 spots in my lungs.first let me give a little history so i can better inform you of what my plan is so i can get some feedback from you all.i had a liver resection done in sept 2011 knowing i had 3 spots in one lung ,was on irrinatecan+avastin before and after the resection.in feb 2012 a spot came up on my liver so had rfa done on that plus a ct scan before i left the hospital.scan now shows the same 3 spots on lung but also 2 spots in the other lung.apparentaly while i was off chemo and avastin for the rfa it decided to spread into other lung.in april 2012 i started xeloda a low dose(1000mg a day 7 days on 7 days of)+avastin.then i started having platelet problems.your platelets have to be at a certain level to take avastin.so i was taken off avastin and only took the xeloda.for much of 2012 i spent all my time and energy trying 3 different drugs trying to raise my platelets,in the mean time my ct scans showed just little growth on my lung spots but the report always says multiple as meaning more than 2(go figure)in feb2013 it was decided to go ahead and take my spleen out as it has a reserve off platelets for your body.my chemo onc really was pushing for me to get back on the avastin.during consult with my surgen(at my request i wanted my suregen who has been in control since 2008)i asked him before i had my spleen taken out if there was any surgery that could be done on my lungs and he is the only one that will look at the actual ct picture and tell me just how many spots that there is.when he came into the room i could tell by his face and he said i had 38 spots total.i kept my cool in front of him and calmly asked so can i have surgery on my lungs and he said no.apparently the whole time i was off avastin is when they started to spread.so now it has been 6 months since my spleenectomey in april i started out with xeloda(2000 mg a day 7 days on 7 days off)+avastin had ct scan in june and it showed shrinkage of spots.but of coarse along with shrinkage come a price of side effects for me.i have developed hand and foot syndrome the balls and heels of my feet are swolen and red ,purple color and so are my hands.onc backed the dosage off to (1600 mg 7 on 7 off) the hand and foot thing is not better i have more mouth sores and my muscles are achey and so all this is side effects from xeloda.my nurse saw my feet two weeks ago and said i could back off on the dosage but i really hate to because i have a scan coming up at the end of august.i dont want to mess anything up for my scan BECAUSE here is finally my question to all who will respond.i had a personal plan that i was going to give my self 6 months to be on this regiem and than contact my surgen to see if the spots in my lungs have spread or possibly some may have gone away as my chemo onc only looks at the report not the picture.now i am second guessing myself because when my nurse looked at my feet 2 weeks ago i told her of my plan and she asked me    and why do you want to know that? so now i ask myself why do i want to know if it is spreading?i already know that they are showing shrinkage but does that mean they are still spreading.if they are spreading(as in more than 38)what can i do about it    nothing  so my friends are we just better off not knowing about our cancer spreading and just concentrate on taking the chemo that is slowly killing us in hopes that we keep on having shrinkage.sorry for the long post but i just had to talk to my fellow warriors about this  thanks...Godbless...johnnybegood

lilacbrroller's picture
lilacbrroller
Posts: 267
Joined: Jun 2012

Hi, JBG. I know what you are going through and I think about it all the time. Stage IV is a tough place to be, and every day I wonder what I should do.

My Mom and I were talking this weekend and we were discussing that at some point, I'd need to stop the chemo and just have some fun, knowing that I will die but consciously making the decision to stop chemo and enjoy life while my body is still in good condition.  

We stage IVs with lung mets are caught between hope and death, every single day. And quality of life means a lot to me. 

I want to go to Hawaii. I want to sit on a beach, hear the waves crash and the birds sing, and smell frangipani. 

good luck making your decisions.

atb

Karin

janderson1964
Posts: 1531
Joined: Oct 2011

Tough question, but very real question that i am sure we all thought about at one time or another. Many times I wish I didn't know. It is getting harder to motivate myself to do a scan than it was years ago. I though it was supposed to get easier. Before I was diagnosed I would alway say that I would rather die of cancer rather than knowing about it and going throught the fight and fear. That wasn't reality. I went into fight mode as soon as I was diagnosed. I think we have to know as painful as it can be. That way we can formulate a new plan of attack if there is still one left or celebrate the good news on those rare but sweet occasions. Most importantly When you/we are completely out of options and it is still spreading we should have the opportunity to go off treatment and enjoy QOL before we can no longer do so.

This disease is certainly not for the weak of heart. I always said that every cancer survivor was/is a hereo of mine. Especially the ones that won't accept the odds or doctors recommendations. I like how you called us fellow warriors. I would like to add brothers and sisters to warriors.

May Godd bless you in your upcoming scans and decisions.

BTW, I think you should stay on the treatment until the scan. That sounds like a good goal/plan.

KathiM's picture
KathiM
Posts: 7874
Joined: Aug 2005

I have 'only' reached stage III, (and stage II with the breast cancer that followed), but I have made plans for when (If?) cancer shows again.

 

My treatment was aggressive on both cancers (already in the lymph system for each).  I am grateful for this extra time to live because of it, but I also suffered from the treatments.  One chemotherapy, Adrimycin, the most effective for clearing BC, I am no longer eligible for, should the BC return.  I have made my statements about my thoughts, but my family isn't too supportive.  

My feeling is that should I suffer a reoccurrence, on either, unless I am given a treatment with a better than 80% chance of survival and complete response, I will not do it.  

My 'laundry list' of physical damage is long.  I am weary from all of the treatments in the past.  I hope I am not faced with the decision to seek treatment or not again....but as it stands now, I am at peace with dying.  I just would request keeping me from pain as I am passing.

 

Warm, comforting hugs, my dearest friend.....you asked (*smile*), so I answered honestly.....Kathi

Lovekitties's picture
Lovekitties
Posts: 2899
Joined: Jan 2010

You have had a very tough road to walk with this disease and have done so much.

I guess I would ask, even if shrinking but still spreading, will it make a difference in any treatment plans or decisions?  If the answer is yes, then by all means ask the question.

For many of us, there may come a time when we have to weigh the quantity of life against the quality of life.  There is no tougher decision, particularly when considering our loved ones.

I know you are a lady of Faith.  I hope that you receive His guidence on this question, so that you and your family can have peace with the answer.

Know that all of us here hold you close to our hearts and will be with you every step of the way no matter what the answer is.

Hugs and love,

Marie who loves kitties

tanstaafl's picture
tanstaafl
Posts: 946
Joined: Oct 2010

My wife's situation is different with low amounts of residual cancer but we do a lot of auxiliary things, even when she had tumor loads.  She's been on oral 5FU chemo (UFT-LV) for 3+ years straight, almost including the day of surgery.  

To fight VEGF, we use cimetidine and yellowed IV vitamin C, 60-80 grams per infusion, instead of Avastin.  When she carried a large, silent but deadly load of para-aortic lymph nodes, she would get pumped up with IV vitamin C  3, 4 even 5 times a week for over a year because her body demanded it (she's down to 3 per 2 weeks).  The vitamin C also reduces 5FU/Xeloda sides effects.  She only takes about 8 grams orally, others would use 12 grams across the day to larger amounts, 20-50+ grams C/day orally, maybe up to bowel tolerance.

To maintain her CBC levels somewhat higher, she eats liver or liverwurst almost everyday, maybe a big heaped tablespoon or two - I can tell from her CBC when she doesn't.  The US version of PSK, a Coriolus mushroom extract once the largest selling cancer drug in Japan for immune support, raises her white blood cells and platelets.  We also add several other fruit and mushroom extract caps as well as 1000-2000 mg of Wellmune WGP.

To help her immune system resorb a few tumors, she's been taking 30,000 - 40,000 iu of vitamin D3 per day for several years, along with with sufficent magnesium and a specific vitamin K2 (See the Dr Joe Prendergast videos and then Dr Prendergast, he recommends 50,000 iu of D3 and even more for advanced cancer ! )     

We also use most of the LEF supplement recommendations to hit many targets, less curcumin, more boswellia. We only buy the PSK at LEF ($$$) because its the cheapest I found for that specific high quality material and my wife didn't have as good of results with anything else. 

She's never used irinotecan, oxilaplatin or bevacizumab, but her tumor cells probably think they are getting hit with a CAM version of FOLFOXIRI-avastin plus some others.   

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

This time around, 4th reoccurrence, I've elected not to know all the details about my mets. I don't know how many spots I have and I don't know exactly where they are.  I don't care!  I'm tired of worry about something I really can't control. I've tried and tried to rid this disease from my body, but it keeps coming back. So nuts to it!!!  I've decided to devote as little time to my cancer as possible. I'm letting my Onc worry about my cancer and he's managing my treatment. Yes, I deal with the side effects of Folfox and Certuximab, but I'm seeing great results for now. Eight weeks ago I weighed 158 pds, was completely exhausted, and thought I was on my out. Today, I weigh 180 pds, my normal weight, I'm back at work full time and I'm experiencing zero pain. For now, not knowing all the details has been helpful, lets just say I worry less.

Buster...

annalexandria's picture
annalexandria
Posts: 2184
Joined: Oct 2011

I wish I had words of wisdom to add here.  I guess I would want to know so long as it had an impact on my decision making process.  If I reach a point where knowledge won't change anything, then I guess I would rather not know all the details.

 Are you still on the avastin?  I know for some people that drug has had amazing results, and I hope the scan shows good results for you as well.

Hugs coming your way~AA

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

all so much this has given me some insight to my decision and i do trust all of your comments.that is a good point i know i am inoperable so maybe i will just go with the flow of chemo until my body says no.i have laid everything down at my Lords feet and i know He will ultimitly take care of me.i think if i found out that the cancer has shrunk but then also has spread more,then i will get more depressed and that is not a good thing(((HUGS))) to all...Godbless...johnnybegood

laylaj
Posts: 1
Joined: Jan 2012

Oh, sweetie...I know how difficult it must be for you to decide.  I know that any major decision has to be made  individually...for some of us we want to have the knowledge so we can fight to the bitter end; for others, the ability to enjoy the time we have and not worry as much weighs in as the more valid choice. I guess I've had a slightly different experience with my cancer, as it relates to myself and my family and the decisions regarding quality of life and what options there were.  First of all, my older brother (by a year and a half) was diagnosed with Stage IV Lung Cancer with mets in late 2010; he was determined to fight but did not want to know how fast the cancer was spreading, and he did not want to give anything up in the meantime.  The doctors recommended radiation to reduce the size of the spots so he could get surgery but he refused radiation; instead he chose to paint his living room or  go for a bike ride, or write in his blog..He did, however, receive Chemotherapy, which helped to an extent, but each treatment was harder and harder on his body. When he was diagnosed, he was almost 200 lbs.  In September of 2011 he was done to 148.  The disease progressed to the extent that he lost his voice, he was unable to care for himself (so he moved in with us), and eventually it took his life.  The last treatment he was scheduled to go to we all discussed the options with his oncologist, which was the only time that Jim asked the important question...Jim was always so sick afterwards...Jim decided not to take any more, and then it was just a matter of weeks.  However, he was surrounded by family, and for at least six months of the nine months he was battling the disease, he was able to at least do the things he wanted to do. Ironically, I was diagnosed in November 2011 (two months after he died) with Stage IV Colon Cancer, metasticied.  When I was diagnosed, I went into battle mode, and my last treatment was late last year.  So far, there have been no recurrances, and I am thankful.  yes, I have pain every day, and yes, I struggle with other issues, but if I had to go through it again, I would do whatever i needed to do to continue on. So, you see, my brother and I had differing viewpoints on the subject.  When you think about what is most important in your life--time with people?  Quality of life?  When you decide what is YOUR "burning torch", you will know what to do.

My thoughts and prayers are with you, no matter what you do.  Even when we are not in treatment we are still fighters! :)

 

LInda

myd
Posts: 30
Joined: Apr 2013

I'm a caregiver and can only provide an outside perspective.  My wife has CRC and it is Stage IV.  I can say that she has done very little on the subject of getting to know the enemy.  I'm the one that found this forum and has more questions when meeting with doctors.  I can say this, if it were me, I would like to know.  I think it would give me a chance to better prepare myself and the family.  Prepare myself to let go of my family and friends.  Prepare to meet my maker. And, to live as much of the moment as I can. 

It is an awful hard question to ask oneself.  I'm sorry.

myd

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

for me, I want to know if its growing, spreading, standing still or reducing.

I do not know "exactly" how many spots are on my liver, yet when it spread to my hip.... I wanted to know which bones... and each time I've had a PET scan, i want to know exactly which area the cancer is in... 

it's a strange thing, as i feel like "I have to know" or "want to know" as much as possible"... just so I can answer any and all questions and to prepare myself and my family.   But I also feel like the time when I'm further away from the "learning the bad news".... that I seem happier.

in other words, the week prior to any oncologists meetings, the day I learn any news is usually stressful too, and the week after (lately) has been depressing.  Yet, once that time is a week or two old... i begin to relax and get to the gotta keep living attitude.

so the answer tells me that the less I know, the better or more positive I will be.

so... I may change my stand on this... but for now, i still want to know... I just need to learn to process the info and get back to Living.

 

i hope this helps... but I don't feel like it will.

Joe

 

lp1964's picture
lp1964
Posts: 839
Joined: Jun 2013

I think there are two types of people in this respect. Some just want to have an over all feel for the issue and don't want to or tired of hearing the detailes and handle it more intuitively. Other would go crazy and freak out if they didn't know every detail because they don't want to lose control. One approach is not better than the other and they can morfe in to the other during a long process. With all this information easily available today, I think more and more people want to know more.

Laz

fatbob2010's picture
fatbob2010
Posts: 372
Joined: May 2012

The temptation is to push myself into a false sense of control over the disease.  At this time I have remission...next quarter the labs or pictures may show a new flare-up.  

For,ME (as for others) the goal is to charish the days that are available and not hold too tightly to what is out of my control.  

I have been blessed with an opportunity for treatment should that make sense.

My personal continence is one of peace with the prospect of an earlier than desired death.

Feeling that, perhaps, the greatest gift to my family and children is to face this monster with grace and dignity.

Stay Calm...Chive On

Art

Nana b's picture
Nana b
Posts: 2756
Joined: May 2009

I would want to know.  I know first hand about your feet and ands bi left fir Europe with them purple.  30 dayes later off Xeloda they are normal.   I may be back on 5FU soon.  

 

It is up to you, but I have to know so I can say WTF.   Sorry.  

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

i have a really hard time with the not knowing...being in the dark about what is going on.  I always have a notebook and my questions written down when I go to see my doctors.  I may even have the answer through online research...but I want to confirm it with the doctor that is treating me.  we were not sure what was going on with me just 2 weeks ago, I have signet ring of they think appendiceal origin.  This type of cancer can be very aggressive and tends to spread quickly throughout the abdominal cavity.  My scaninconclusive ok...but not clear....my CEA is higher than at diagnosis...but not too highmy and I have been in pain since February. I knew when I made my first appointment with a specialist that one of the options was cytoreductive surgery and HIPEC, another option was a diagnostic laparoscopy to confirm wether Or not there is progression, and a third option of just watch and wait.  the specialist recommended the diagnostic laparoscopy which gave us the most diffinitive picture of what is actually going on right now.  I was not comfortable with just waiting until I didn't feel good ... At that time it might have been more serious.  It turns out that we got good news...that there is no progression and that we can go on a watch and wait for the next 3-6 months.

i guess what I am trying to say is that no matter what the outcome of the surgery was...I needed to know what I was or was not facing.  maybe, just maybe, you will get good news that the chemo is working.

 

alex

db8ne1's picture
db8ne1
Posts: 84
Joined: Feb 2013

The answer to your question is as varied as the number of people on the planet or stars in the galaxy.  This is such a personal decision for every one of us. 

While I am "only" stage 3, prior to my CT scan to check for mets before radiation and chemo could be planned, I informed both my radiologist and oncologist that if I was state 4 I did not want palliative chemo as I was more interested in quality than quantity.  I HAD done tons of research, so my comment was made from a well-informed position. That, and I have great faith in my Lord and Savior and whatever plans He has for me (whether here or there...).  I believe that time was created for us - time is irrelevant in eternity.  There is a good chance that I will be stage 4 at some point, so I am prepared.  I've always been a hope for the best prepare for the worst type of person...

That said, my children are young adults and self sufficient.  If that were not the case, I am certain my perspective would be different.  My prayers every day of their young life was to be around to see them reach adulthood.  They have.  I'm good (and eternally grateful).

However, I am a "need to know" person, so I want copies of every report and spend copious amounts of time researching and getting statistics (much of which is outdated, I know...).  The information and data will not change my mind, but I do want to know what is happening to me.  It's who I am.

I will pray that you find the answers you are looking for and feel comfortable and confident in them.

You are in my thoughts and prayers.

Jenni

Annabelle41415's picture
Annabelle41415
Posts: 4207
Joined: Feb 2009

I'm not really sure what the answer is.  I'm sure that this is something that has been going through your mind a lot and everyone is different.   With my surgeon I've never really asked a lot of questions because he was someone that no matter what he said I'd be ok with and trust him entirely.  Wishing the best for the rest of your treatment and hoping that you have some good results.  Sorry you are having such terrible hand and food issues, that has to be very frustrating. 

Kim

marbleotis's picture
marbleotis
Posts: 476
Joined: Mar 2012

This is a great but tough conversation.  It is really personal.  For me I would rather always know.  I can only prepare and fight what I know.  When I had the tumor removed in Jan 2012, they provided a glossy picture.  I stared at that picture while going thru chemo to keep me focused (yes-I know it is odd).  I need to see the enemy.  I am stage 3b signet cell so I am not qualified to speak as a stage 4 person. 

I find you know yourself better than you think.  Why not finish the chemo, get the scans and then see how you feel.  You are putting alot of pressure on yourself to make this decision now.  It does not need to be made today.

You are a smart lady and a fighter.  Ease up on yourself. 

All the best to you!

here4lfe
Posts: 294
Joined: Jan 2010

Your question is heartbreaking. The real answer is it depends on your coping strategy. My wife didn't look at her scans, I did. She didn't seek out this forum, I did. But when she knew it was her time, she put her affairs of the heart in order, closed her eyes, and died peacefully.

Best

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

everyone for your comments i have about 2 weeks before my scan and a lot of thinking to do i love you all...Godbless...johnnybegood

thingy45's picture
thingy45
Posts: 569
Joined: Apr 2011

Hi JBG, Nobody can really give you an answer. This is a personal issue. Do you want to kn ow or not know.

Personally I am a person who likes to know and then I c an make my own personal decission. My kids know my decission. I choose quality over quantaty. I live day by day. Do I worry? Ofcourse, but only "One" knows what is in our future. Wait and see what the scan tells you and THEN you can make a decission were you go from there, and which path to walk.

 My love and prayers are with you and your Mom, I also have a daughter who is fighting an illness, plus my own problems. I am not always on the board but I do follow and read everyone on here.

Hugs and love and positive thinking for schrinking mets,

Marjan

 

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

I think this is a situation we have all been in.  With situations, not just ca, i have always been the type that has to know every little detail so i can deal with the situation better. But with this 3rd round of ca, sometimes i ask myself if i really need to know all. And of course with me being the way i am, yes, i want to know. It is an individual decision so there is no right or wrong. With prayer i know you will reach a decision that is right for you.

You & your family are still in my praayers

hugs

judy

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