No treatments for me.
I've already had chemo twice for bone cancer when I was much younger so when I was told that chemo would only possibly give me a little more time but most likely the SE would do more damage than the bc I declined to have any treatment at all. I'm on Hospice now and only treating the pain. I was diagnosed at stage four, but wasn't told about it for months after seeing two different oncos. I was suprised a few weeks ago when I was told by my doctor when I told her that I thought I would be around for a long time she said "I don't think you are going to live more than a few months". I guess I thought that I had more time. I'm perfectally fine with my choice and I feel like I've been living on borrowed time ever since the first cancer(not related to this bc). And now I have a progressive lung desease (UIP) that is making it very hard to breath. I won't have any scans to see if I have more mets than I had before because I figure it would make me hurt more to know for sure. I did have surgery to remove all four of the tumors in my breast and my lymphnodes in my arm and chest but that's as far as I'm willing to go. I thought i would see more women on here who are Hospice but it's looking like it's usually family members of Hospice patients here. I see a lot of women who are in stage four and doing well on meds but I simply don't want to take any. I'm not depressed at all, in fact it's a relief to me to be almost done with all of this even if I die from it. We all go sometime. I want to see if anyone else has refused all chemo and rads and decided to just let nature take it's course.
Sincerely, cin
Comments
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You are a brave woman to look at it the way you do. Doctors do not know everything and there is a good possibility you will be here longer than your onco said.....which would be a good thing, providing you are able to keep your pain under control . I think quality of life is very important. Dealing with cancer and treatments can be a real PIA, but I have been very fortunate in that the chemo I have done ( except for one that I quit) has not really interferred with my living a "normal life". How we choose to proceed after our diagnosis is a very personal decision and only you can decided what is right for you. As I said, I think you are a brave woman and I wish you the very best.
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Marybe, Thank you. I'm happy with my choice but I wish I could say that my family understood why I feel the way I do. I know it's hard for some to understand but I also know that I'm only making choices for my own life. Thank you for the positive feedback. Sometimes I need to hear someone else say that I'm doing what's right for me so that makes it the right choice for me. I hope you do well for a long time to come.
cin
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Cin, I am so very sorry you find yourself in this position. I can feel your pain. I ran out of chemo options and totally understand where you are coming from. Like Mary said, oncs don't know everything. I'm going to send you a pm....I hope you don't mind.
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gracie!; I don't mind at all. I love talking to others who understand what I'm going through. Even though I've chosen not to treat I'm getting a lot of grief from a few of my drs for it. I know they don't like to lose patients but I think I'll live longer without any.
cin
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Cindy Rose,
It is touching to know how much you are loved by your family, and that is why your decision doesn't sit well with them. In time I know they will understand your choice. You are very strong and seem clear headed about this decision. You have my support and admiration . Caryn0 -
Thank you Caryn. I am ok with my choices and my family is starting to come around but I don't think my mother will believe it until I actually do die. She's in her own little happy place. I guess it's her own way of dealing with me having cancer again so I'll let her keep on denying it while she still can. Too many people are going through this along with me, but I'm happy that I'm not alone. This place is where I get my strength and my peace. Thank God for it.
cin
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Cin - It seems you are comfortable with your decision and that is the most important thing (in my mind). I was diagnosed at IIIc and never asked/wanted the MO to give me 'chances' of survival. I'm not a statistic. I made decisions based on information and what I felt I could do, not on longevity. I laughed every time the the RO told me my cancer was the 'silent killer' but 'I think you're going to make it'! He doesn't know - no one does (except God). When my PCP asked about my 'chances for survival' I told him I never asked and there was good chance I could outlive him! It made us both chuckle.
I truly think I would make the same decision you have made - at least I think I would. I probably have the fortitude for one more round of chemo if needed (depending on the facts) but that isn't even a given. Maybe I would decline and just enjoy each day.
Take care - stay pain free - and call a friend for coffee!
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ohio4me,
It still makes me laugh to hear all the things that people, including Drs, say to try to make conversation with a cancer patient. I know people usually mean well but I just can't help but laugh at them and then warn them not to say stupid things to someone else who might not think it's as funny as I do. My first onco actually yelled at me when I asked how long I would live without treatment saying "You won't live without it! You have to have it!" Oh, no I don't. I wish everyone who wants treatment the strength and courage to get through it and those who don't want it the peace within themselves to trust their own decisions and either way to push for what you choose. Coffee is my best friend these days. I hope your doing well today.
cin
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Cin - I have a medical background so my relationship with my doctors is a bit different. I missed my mammo in 2010 - may have missed a diagnosis back then but it's in the past. My first visit with my BS she glared at me when she realized I missed a year (she knew I am a mammo tech). I just put my hand out and said 'go ahead and slap me now and let's move on - I can't change the past'. We both busted up laughing and that set the mood for my treatment plan the past year - she did slap my hand
Yes - I have risk factors I could have controlled better - but didn't. I could have had my annual mammo - but didn't. Can't change it - 'it is what it is'. I have decided to enjoy today and not plan for a gloomy future.
Yes - I know I am at high risk for recurrence. While my PET scan was negative I fully understand everything could change tomorrow.
I do have a different outlook. I try to keep my 'affairs in order' better. I am single so it's up to me to keep my bookkeeping in order and plan as best I can for future medical and financial needs. I make the best decisions I can.
I don't pass up opportunities to spend time with family - even if it's a run to WalMart (was there twice yesterday with different people
.I'm not fanatical about controlling my risk factors at this point - I could probably do better. I know nutrition and exercise would help but sometimes I choose pizza and a movie.
I'm just enjoying each day - hope you find ways to enjoy your days also.
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ohio4me,
It sounds to me like you have a good plan made out for yourself, and once that's in place all we can do is our personal best to get through it. Maybe your decisions were sluggish and you could have gotten checked sooner but it's your body. Any choice you make is the right one. I try to continue to do what I think is right for me weather or not anyone else thinks so but I do wonder if going a different direction would make anything better. I guess that's a question that I'll never get the answer to. I'm glad that you have a relationship with your team that works for you and you seem to be looking forward and not back...that's always a good thing. Sometimes we just need pizza and a movie...and a little hand slap to get us focused and moving forward. I try to do things everyday to keep myself busy but most of the time I'm just too tired so I write a lot. I sincerely hope that you continue to take every opportunity to do anything that makes you happy. I never thought I would miss going to Walmart but lately I would like to be able to go out without having to turn around and go right back home.
Take care of you, cin
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Cin - those motor carts at WalMart work very nicely. I used them all during chemo and radiation since I didn't have the energy. I'm in a mode to rebuild stamina but late yesterday I used the motor cart at WalMart. Got halfway through shopping and was too tired to walk more.
It's sort of fun to zip through the store and see everything. I used the ones at the grocery store quite often, also.
Get a handicapped sticker if you need park closer or have someone drop you the door. Don't stay home all the time unless it's the choice you want to make. I am a house mouse but do enjoy getting out.
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ohio4me, I have used those carts but because I only have one leg I tend to take my wheelchair when I go to the store just in case there aren't any electric carts not being used. I do have a handicapped plate on my car so parking is usually right in front. I try to get out when it's not too hot but we've been breaking heat records so by the time I get in the doors of any store I'm already pouring sweat so it's embarassing as well as exausting for me. Hopefully it'll cool off a bit soon...even the pool water is like bath water now. I am starting to feel a little bit more energy today so your absolutely right about making sure that I don't just stay home all the time. I keep planning on going places early in the morning but by the time I get ready I start second guessing going anywhere. i'll give it a shot today and see what happens. I am very happy that most stores have those carts for people, I know there are people who wouldn't be able to shop at all without them. I hope your feeling well today.
cin
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Dearest Cin -
I just want you to know that my Mom died of stage IV lung cancer almost a year ago. When she was diagnosed she said the same thing you have said. I did talk her into some palliative radiation and it helped her pain - but she did not have any biopsy or scans, past the diagnostic CT scan. I never questioned her choices. I really believe (and thankfully I told her this) that we don't really have nearly the control over our lives that we are led to believe (because we always have some social, financial, or other pressures that guide our decisions), the least we can do is have control over our deaths.
I hope that you enjoy all your days here on earth, and that your family finds peace and understanding in your decision.
Gentlest of hugs to you.
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BLinthedesert,
I'm so sorry that you lost your mom. That must have been very difficult to go through. My main concern is for my DH, DD, and DS. I'm worried about what will happen to them when I die. I feel a bit better these past few days so hopefully I won't be going anywhere for a long time, but it's always on my mind. I can't seem to shake the thoughts. I'm ok with not treating but it's kind of back-fired on me because when told that I'm not in treatment my family and friends took that as not having bc anymore. I guess they think that I've been miraculously healed. I hope your feeling well today...I know I do.
cin
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Cindy-Rose:
I can't say I know for certain what I would do in your position as I am not there, but my inclination is the same as yours. You deserve all the support that anyone else has. More people of your thinking do not post on BCO probably because there is a lot of pressure on this board to take treatment no matter what, so those who refuse it prefer not to speak up. I admire your courage in your convictions. Hoping the docs eventually come around. I am certainly rooting for you.
There was recently a lovely article in The Washington Post (excerpted from the journal Health Affairs) by a woman who was also diagnosed stage IV. She has decided to take palliative treatment only, so she is somewhere between you and a person who seeks full remission. Of course, each person responds so differently to chemo, rads, etc... that what is on person's palliative (eg "stable") is another person's NED. She does have scans, rads, etc... but her intent is not to see remission. Here is the link:
You will also see that she got plenty of supportive comments.
All the best to you.
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Cin - it is/was very hard, but it is a normal part of the life process and that gives one solice; many people who face un-natural life events (losing young children for example) have the added burden of dealing with completely unexpected traumas. My Mom did not suffer, and for that we are all most grateful. Also, there was time for all of us to say good-bye, and my brother and my Mom were estranged for many years, and they were able to make ammends. So, despite the sadness I still feel when I can't share daily events, I feel very much at peace with her passing.
All this said, I am hoping this is not your issue for a long, long, time. Mainly, I wanted to give you some insight to a daughters perspective, and I hope that your daughters will come around to this as well. As for you worrying about them, they will be fine ... of that I am sure.
I am feeling wonderful, ready to go for a run, and trying to enjoy even the oppresive heat. I hope you do something good for yourself today!
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Cindy, I have apparently run out of private message ability. I was not aware that feature was limited to a certain number per day.
My husband is very sick tonight. If he's better tomorrow, I'll give you a call then. If not, then we will head to urgent care or ER.
The VA has screwed me again. I have to call the doctor on Monday to see about going to a breast specialist and getting a MRI. I'll fill you in on the details hopefully tomorrow.0 -
Cindy..
Rose
I see you in a field of flowers, with a basket
Treatments come in all forms
You are full of life
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Nikki, Your killin me here!! I hope everything is ok. Call me tomorrow morning and we can talk.
Celine, How funny, I do love roses though because of my name.
BL, I'm totally fine with the idea of dieing but that's only because my hospice team is perfect for me and will do exactly what I want. They took away what I was afraid of. They have coma drugs and aren't afraid to use them.
Athena, I read that whole thing and I loved that she was getting what she needed. It sounds very familiar to me. Thanks for posting the link. I think you'ld be surprised at what decisions people can make when given some well thought out choices to pick from. I figure that it's just a matter of time for me no matter what I do, so I want to be as happy as long as I can. It's working for me so far.(with a few minor bumps in the proverbial road)
cin
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CindyRose, found your thread through a friend's profile. We are not in the same position, but I understand you and support you. I knew years ago that I would work through anything like this naturally, and in the end I would choose no treatments. I have friends / relatives in both palliative and hospice situations, several who were there and are gone now. You mentioned your hospice tea, these people touch my heart like no others, what a godsend they are. Just wanted to say I understand you. Diane Essa
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Hi Cindy-Rose, what a very beautiful person you are....stay strong as i try to do the same...i am not on anything either just the Gxvega (bone injection via stomach once a month and Armosia tablets for the receptors to be kept off). My family are very understanding of my decision not to take any Chemo treatmeants as it has play havco on my body...i did have Chemo treatments for my first dx with 6 cylces and was sick everyday...i had one Chemo treatment called "Abraxane' for my Liver cancer but i ended up screaming in pain from the side effect and it had cause nerve damage to my finger tips and toes. Then i was switch over to Xeloda tablets 3 in the morning and night went very well with much fanfare till Dr up the dosage up 3 morn 4 at night and i ended up with red burnt feet and couldn't walk and went into her office crying and said my body can't cope with it..so i went off it for 4 weeks to give it time to heal as i went away on a cruise, never felt so much better and had a fantastic time...came back and went straight onto the Xeloda again only this time 3 morn 3 night...use 84 x 2 all the way through Europe, Italy, France, London and Singapore and came back to have a Ct scan only to be told that my Liver tumor was growing and i had 4 more new lesion and that it has spread to T-8 in my spine...that is when my Onco said i have 3 options, more chemo treatments, do nothing or have Aromsia tab and bone injection and i chose the last one.
So the decision i am happy with as i want to enjoy what i have left and be with my wonderful family and friends and my gorgeous grandchildren is all that keeps me going and i wake up to a brand new day and enjoy each moment of what it brings.
I admire all of us that are going through this dreadful time and the personal decision we make is our own and no-one elses. I too had my Onco said to me i have already told you how long you have and i snap back at her saying maybe you did and just maybe i didn't hear you as i had to consume so much information that day and i was always alone when i was hearing all these bad rotten news so she said sorry and told me.
My mother said she had a book called "Doctor's words can kill" and loan it to someone and never got it back...oh how i wish i had that book now.
Enough said...Enjoy life Cindy-Rose and all that it has to offer and the same to everyone else here.
Landdownunder
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Daine, I was so afraid of the suffering before death that I actually considered doing chemo...then, I realized that I was more afraid to have the chemo. I was still very afraid when I was told that hospice was an option for me and because of some very bad uncontrollable pain I was taken to an inpatient facility where I met my medical director. She asked me what meds worked for my pain in the past and when I told her what usually worked she more than trippled the dose and gave it to me through my IV. I don't remember most of the time I spent there but I do know that when I said that I was ready to go home again they sent me home right away. Luckily I've been ok since with just taking my usual pain and anxiety pills. I'm not afraid anymore. They took away my fear by showing me what they could and would do when I couldn't stand the pain. Now I can live without the fear that consumed me before. I'm able to try to do things that make me happy while I still can and it's all because of hospice. They defiantly are a Godsend for me.
Landdownunder, You are so right! No matter where any of us are in life we should enjoy all we can, however...it seems more important to do when told you have bc. I really don't think that it matters where in the process we are because everyone needs to live like they're dieing. I think for me that having the chance to think a lot about life and choices has given me a perspective(I won't say gift because it isn't) that I probably wouldn't have otherwise had. I'm so happy for you to have been able to go on trips and be able to enjoy life for a while. I was purposely trying not to find out where my bc is hanging out because I think knowing would just give me more pain and I'm trying very hard to keep that under control. I hope your being well cared for because you deserve that..we all do.
cin
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Hi Cindy-Rose,
I'm early in my treatment, only on 2nd chemo round. I have great respect for your decision. If you have peace of mind about it, you can do anything and choose anything. I've already dwelled on the "what if" scenarios for terminal cancer and realized it's the possible medical treatments themselves I dread more than the end of life. Why go through it if it doesn't add significant quality time to your life? I'm so glad you're getting good pain and anxiety control. That must make all the difference in letting you enjoy the life you have now. I do hope you survive longer than the doctors expect.
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Ann,
I'm kind of curious about the time I have left myself...but I'm trying to live like I'm perfectly healthy. I'm managing to fool myself very well.
Every day it's getting easier to focus on the important things, and I'm doing well keeping the pain to a minimum with the help of some wonderful doctors. I never did think much of doctors before but I sure am grateful for them lately. I'm having a good day today. cin
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That is great to hear Cindy. The important thing is to feel that one is living life on one's own terms.
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Fantastic Cindy, I hope tomorrow is a good day too, and the next day, and the next day.............
Dawn
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Cin, so happy to read your enjoying life with minimal pain. I hope those good days continue for a very long time.
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Thanks ladies.
It helps so much for me to have BCO because I don't think that I could have ever gotten over feeling sorry for myself without knowing that I'm not the only one struggling with bc. We all have different stories and different issues to deal with but we also all need to be around other people who understand what it is to live with any kind of bc and at any stage in the process, because it all just sucks. I've been trying so hard to try to forget that I even have it anymore, but some days I think that I do better when I admit that I do have it and that I'm surrounded by others who know how I feel. Weather or not I like it, it is a part of my life. Not a part that I like but it's a part of me none the less. I hope that you are all feeling well today and are able to find some kind of peace in this shit-storm that we've all been tossed into. I have a very long chore list today to try to keep remembering that I'm still here. It hasn't beaten me yet.
cin
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Cindy, I completely support you in your decisions. I so often wish I had followed my heart and also refused treatments as I have not had a day without pain since September 2010 due to surgery, chemo, multiple meds to try to control adverse effects.... in the end, recurrence anyway, and am angry that I was robbed of the probably at least 6 months of feeling good before things got worse. I try every day to forgive myself for not listening to myself rather than those who love me so much, and am mostly successful, mostly successful in the not doing the "coulda, shoulda, woulda". It is what it is now, and I live with that, often unwillingly. The docs just don't get it that I am not pursuing any further bc treatment, only palliative. I do have an excellent pcp/palliative care specialist and an integrative health team that are helpful, and my MO and BS are not deserting me, but are helping with referrals to PT as needed.
Sorry for the long post. I just wanted to throw in my support for you. You must make the decisions for yourself, and if others influence you, you will tend to resent them, and I am sure they would rather just spend time with you enjoying you rather than having you p*ssed off at them.0 -
Linda,
I'm sorry that you've had to endure going through so much pain and sickness. My own family has tried to push me into treatments all along but I just couldn't do it knowing that I would spend what life I had left dealing with the aftermath of chemo and rads and more surgeries. I hope that you have lots of time to enjoy life. My family still thinks that because I refused what could have possibly helped me live longer that it's now my fault that the cancer is still growing. Too many people are brain-washed into believing that a few chemo treatments will make us all better. I know that for many people chemo and rads does give them a lot more time, but I just couldn't see poisoning myself in the hopes that it might give me a little more time. I would rather feel well enough to still be able to do the things that make me happy. I hope they(my family) come around soon. I've been staying away from negative people as much as I could so that I don't have to hear all about what they think will 'cure' me. If I could have one wish it would be for everyone to have all the facts about how chemo, rads, and surgeries (and all other treatments)actually work...and all the side effects they can cause, how much the doctors actually know about what could help each person...and more importantly...what they don't know. It would be so much easier for us to make decisions about what we should do if there were definite answers to what would cure each person, but there just isn't any way to know for sure. All we can do for now is make our own decisions based on what info we have and what our doctors think would give us the best chance of living longer (in some cases many years). Hopefully that could change in the future. I don't like seeing people being pushed to do anything that they don't want...no matter what the outcome, it's always our bodies and nobody should push their beliefs on medical treatments on someone else.
(((HUGS))), cin
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