Topic: No Treatment

Welcome JoJo.  I feel like I am here to support everyone regardless of their treatment preferences and decisions.  Often in the eight months since being diagnosed with mets I have thought about not doing treatment, but because my kids are not grown I feel that this is not an option for me.  Things have been so difficult in the last few years even with the treatment I did initially. 

 Naturally your family will want you to stay around as long as possible.  But even as empathetic as family and friends and even people here can be, noone really knows completely how hard things are for anyone else.  I believe that in the end we have the right to choose what course our lives will take.

Feel free to come here anytime to vent, moan, laugh or cry.  We are here to help.

Take care.

My fate was sealed when I heared the dx.  I don't want to fight. I don't think 1 year or 5 years will lesson the pain that my family and friends will feel.  I don't want them to have to suffer though all of this with no cure in sight.  They will be devastated by my death whether if it comes in 6 months or 6 years. I don't want my family to have the anxiety and false hope.  I don't want their lives to be centered around me having to fight the fight with me for an outcome that can only be one thing. My grandchildren will remember grandma as being sick, but will not remember me as being sick for a long time. That is what I want. I plan on no treatment what-so-ever.  Just pain meds when I need them.  I have not shed one tear since I made this decision and I feel very good about it.  My significant other will no doubt tell me that I will change my mind, but I know I will not.  I am only interested in staying comfortable.  I am curious on how long my onco will tell me I have left.  I am going to limit my appointments to only medication reviews and not have any scans, etc.  I will be looking to all of you for advice on meds and pain managment.  I do need the help.

JoJo-

I totally understand about not wanting to do conventional treatments. I don't want to do conventional treatments either. But how about trying some alternative and/or holistic methods?

I am a big believer in nutrition. You can go to the library and find numerous books on nutrition. My favorite is "The China Study". Also "Anti-Cancer" and "Crazy Sexy Cancer" and there are lots more. When I first found out I had cancer and my friend suggested a macrobiotic diet, I thought she was nuts. I told her that the doctors would know if diet worked and everyone would do it. So I didn't make any changes in my life and got cancer again. It was a wake up call the second time. I started researching nutrition and have found that there is something to it. This is the treatment that I have chosen. I have had surgery and lost both of my breasts. I don't want any more conventional treatment. I don't want scans or anything else. I just want to do everything in my power to be as healthy as possible and if that doesn't work for me then at least I know I have tried.

Good luck to you.

I doubt that anyone here would tell you that you have made a wrong decision.  I certainly wouldn't, as my mother-in-law made the same choice and I did support her choice.

However, I would like to share a couple of things you may want to think about - my MIL made this decision and did not share it with her husband of over 50 years, or with her son. Both were devastated when my FIL discovered the lump by accident one morning. He actually had to be hospitalized for heart problems - he was stunned. My husband was very angry with her - he felt excluded and unloved.

When my daughter was born (only grandchild), her doctor suggested that she try a hormonal. She tolerated tamoxifen very well, and got three good high-quality years with very few side effects. My daughter remembers her, and I am grateful. Tamox is just a daily pill, and for me, I get it through a drug store program for about $100.00 per year.

I did ask her if there was anything she would have done differently - she said that she would have had a simple mastectomy, as the wound management at the end when the cancer broke through the skin was very hard, and she hated the smell and the pain  a lot.

I wish you years of happiness with your loved ones, and am so sorry that you have to deal with this. I hope these memories help.

Jo- . Know that this journey is different for each person and this is a decision that only you can make. There are many things available to help make you comfortable when that time comes. You might consider talking with hospice and/or pallative care specialists so you have a plan in place, have things ready to help you feel as good as possible for as long as possible (might help the family with your decision as well)

If you do change your mind thats ok too! I think we all go thru many places, thoughts and plans as we deal with this. This is a good place to think things thru, talk, rant, cry, laugh or just be. 

Please keep in touch....hugs and prayers

Hey JoJO,

        I have told my husband that I will not go through chemo again. Once was too much. I have been on hormonals, had radiation and will try xeloda but that's it. The quality of my life is important to me. It just sucks that we have to make these decisions.

Hugz

Hey, how do you feel about alternative (rather inexpensive) alt supplements?There is so much pressure to take the traditional road, but I hear so much successes with alternative treatments. I did an alt along with my chemo. I am stageIV and my only issue right now is the bone mets, which I am going to handle with nutrition and getting my Ph in line. Just because you have chosen to forgoe the traditional methods, doesn't mean the end sweetie. I will be happy to tell you what I am doing...The most terrible awful thing that could haopen is that you feel pretty darn good for a while??? Please contact me by email and I will tell you the route I took.  

Im also with you JoJo..

I do not see myself going through chemo after chemo.. As a number of ladies have stated, xelodex will be the only chemo type treatment I plan on taking.. after that..no more.. The first time I took chemo in 2006, I felt terrible and ugly and sick.. I only took the A/C part and refused the last 4 taxane treatments... I believe the chemo's are what destroy the organs (liver especially) and I will not put that kind of stress on my vitale organs.. Chemo will only postpone whats gonna eventually happen anyway ...

May GOD continue to bless us all ...

Love, peace, hope and joy  to all my beautiful sisters...

Hattie  

JoJo:  May I respectfully inquire as to your tumor status?  I respect your decision and am all about QOL, I have made most of my choices based on grabbing as much QOL as I can while undergoing what I perceive to be life extending treatment.  I know I will know when enough is enough. 

I would like to offer this thought.  Seeing the recent fights/decline/deaths of your friends can certainly stir emotions and thoughts, but your disease management QOL and outcome WILL be different from everyone of them.  Breast cancer does not treat everyone the same, it is a different disease for each of us.

I spent time with a friend yesterday that came into my life when I had similar thoughts as you.  I was stage IV at dx with extensive liver mets, and did not want face ongoing chemo.  My friend was diagnosed at age 37 with extensive liver mets and did endure 9 months of chemo.  She had told her onc and family that she would endure no more treatments and went off the chemo at 9 months and our onc had to beg her to accept Herceptin (she was a lottery recipient of the drug in 1998).  When she stopped treatment he had been working behind the scenes to get her approved to receive the drug and it took him 3 months.  He told her you can chose to take it and you can chose to stop it if it impedes your QOL.  She agreed to try Herceptin and has only been on Herceptin with no real QOL issues, other than going in for infusions every three weeks since 1998 and is still NED, has worked, watched her 3 children graduate, go on to college and became a grandmother 10 months ago.  I am on Xeloda which is an oral chemo I take at home with a good QOL and have been on it since Jan.  This was not my oncologists first choice for me and he wanted to give me a more agressive cytotoxic chemo.  I know others who have been on Xeloda for several years and are stable.  Had they not tried Xeloda they would have subcumbed to the disease.  Months with a good QOL is a HUGE gift to you and your family. 

I don't know you or what information you based your decision on, I can only hope you have been given all of the CORRECT medical information about YOUR type of breast cancer. You can even chose to skip standard of care regimens and perhaps try something aimed at QOL and see if it gives you comfortable time.  Even if you forgo chemo or target therapies,  there are palliative treatments that will improve your QOL during your remaining time.  Please don't close your mind to these options. 

Your thoughts, feelings and need for support are always welcomed here.  There are many women here for you.  I sense you do not want the pity and attention this disease brings.  You don't have to tell anyone but who you chose to tell.  I did not want the pity part and I can say what I perceived as pity has shown to be true care and compassion and friendships at a depth I have never known and would have never known otherwise.  Another gift in this mess.

I wish you peace and comfort physically and spiritually as you move forward.

With loving respect,

Darlene

Jo Jo,

I am glad you have a bf and an onc that supports your decision.  I hope you exceed all expections no matter what you do.  Also, I say, go ahead and have a drink.

Take care,

Linda

JoJo, when my Dad was diagnosed with lung cancer we all wanted him to fight it. It took 2 1/2 years for him to die. At the end we talked pretty openly. He said if he knew the agony of surgery, nausea of chemo and discomfort of rads was going to be so bad he never would have done it. Lung cancer is pretty terminal.... I don't consider him having LIVED for 2 1/2 more years, but that it took him that long to die. And we stood by helplessly watching the whole process.

I pray you God's guidance in your decision and peace in your soul that you have taken control.