I would NEVER have done Chemo, if I knew back then what I know now

tasha_111

I truly believe that Chemo did me more harm than good,  with all the Chemo-brain, balance, confusion, neuropathy, lymphodema  and all the other side effect problems.  Plus IT CAME BACK! Stage 4 exactly 5 years and 4 months after initial dx.  I honestly feel that my quality of life would have been so much better without Chemo,,,,It has really screwed me up and I as now stage 4!  What is the point?   What WAS the point?    Honestly, arm yourselves with the info about your treatment before you succumb to the wishes of your (often outdated) oncologists.  Chemo kills more people than it saves, it is poison.  Just make sure you research this and are informed please.   Jxxxxx

duck1255

No Chemo

Thank you for your post. It makes me feel better about my decision to get a second opinion at a major cancer center. They recommended hormone therapy which made me feel better, I really didn't want do go thru chemo I saw what my dad went thru 10 years ago and it didnt help him. I think our local small town oncologist is so over loaded with cases he just orders chemo for everyone.

button2

So sorry

First of all, I am so sorry for all your troubles and your stage 4 diagnosis. Cancer is such a beast and it is SO unfair yours came back. I feel my life was saved by chemo however. Being HER2 positive and having two very large tumors, I was completely inoperable without a very difficult course of chemo before my mastectomy. Of course, mine has a large percentage chance of returning like yours did. Still, I have accomplished much in 2.5 years and I will never regret my decision. Perhaps, it did save you too? Are you sure you'd still be here? I wish you all the best going forward and obtaining the best quality of life you can. Everybody deserves to make the choices they feel best for them with this very complicated disease, so different for each sufferer. Hugs, Anna

New Flower

duck1255 said:

No Chemo

Thank you for your post. It makes me feel better about my decision to get a second opinion at a major cancer center. They recommended hormone therapy which made me feel better, I really didn't want do go thru chemo I saw what my dad went thru 10 years ago and it didnt help him. I think our local small town oncologist is so over loaded with cases he just orders chemo for everyone.

for newly diagnosed making decisions

I have had Chemo twice in 2008 IV due to primary diagnosis and oral in 2012 due to mets. I am facing another recurrence and have to make decision about my next steps

70 % breast cancer survivors never faced this disease again. Gormone therapy is not very effective for everyone with ER positive cancer, so Chemo can be a better choice for them.Ongoing research -genotyping of actual primary tumors will provide recommendations on genetic mutations in tumors and recommendations for treatment choice. You can try to use this technology to determine the best treatment for you. second opinion is always a plus.

good luck

Lilly9

button2 said:

So sorry

First of all, I am so sorry for all your troubles and your stage 4 diagnosis. Cancer is such a beast and it is SO unfair yours came back. I feel my life was saved by chemo however. Being HER2 positive and having two very large tumors, I was completely inoperable without a very difficult course of chemo before my mastectomy. Of course, mine has a large percentage chance of returning like yours did. Still, I have accomplished much in 2.5 years and I will never regret my decision. Perhaps, it did save you too? Are you sure you'd still be here? I wish you all the best going forward and obtaining the best quality of life you can. Everybody deserves to make the choices they feel best for them with this very complicated disease, so different for each sufferer. Hugs, Anna

I completely agree with Anna.

I completely agree with Anna.   I had the same situation - chemo before surgery because of the size of the tumor.   I am so grateful and thankful that chemo was available along with my surgery and radiation.   My grandson was less than 3 months old when I was diagnosed.  He's now 27 months and is the joy of my life and well worth every single thing I've been through and continue to deal with.

button2

Lilly9 said:

I completely agree with Anna.

I completely agree with Anna.   I had the same situation - chemo before surgery because of the size of the tumor.   I am so grateful and thankful that chemo was available along with my surgery and radiation.   My grandson was less than 3 months old when I was diagnosed.  He's now 27 months and is the joy of my life and well worth every single thing I've been through and continue to deal with.

Thanks Lilly

I would go thru chemo again to get even an extra month or two. I never understand people without cancer who say "He did chemo, but only got 6 months more" etc. My surgeon and onco get so annoyed with people dismissing the idea of chemo out of hand. So great about your grandson, I can't wait to have some of my own!!!!

Marcia527

So sorry!

Tasha, I hope things go better than you think.

Hugs, 

marcia

GlowMore

Marcia527 said:

So sorry!

Tasha, I hope things go better than you think.

Hugs, 

marcia

Oh Gee

Oh gee what sad news...just hope and pray you will find a treatment to help you in some way.   And just so sorry that you believe chemo kills more than it saves because so many of us have been given extra years because of the chemo.    Prayers for strength and courage.

  

disneyfan2008

hugs

hugs

carkris

disneyfan2008 said:

hugs

hugs

it is so frustrating to go

it is so frustrating to go through all that have side effects and for it to not pay off. Unfortunately it is still a crap shoot, and it takes its physical and mental toll on us. They simply havent been able to make the determination of who it would benefit . In the 20 years since my first diagnosis, there has been progress but we need more and we need it quickly. I am on my second primary, and I took chemo, I had to feel i did everything i could. I have neuropathy and I struggle with menopause and chemo brain. I dont know if it worked either. I think someday they will look back at the barbaric way we treated cancer when they have better treatments. Like using leaches in the olden days. hugs

camul

I had hemo also

But only 3 tx instead of 4 of ac. Had a full on allergic reaction so they determined best not to do #4. I got cancer back, mets 8 1/2 yrs later. I am so thankful for the chemo I did get. Would I have had the 8yrs without it? Dont know. I was one who was told from the beginning it is most likely "when it comes back" not "if" because it was most likely HRT induced. I then had a toxic reaction to Tamoxifen so that was only 8 months. I am just so blessed to still be here, espcially the last 4 years as there was no guar, I was told 3-6 mo. w/chemo which i did weekly for 2 1/2 years. No more tumor in liver, yet it is now thru my bones. The Aromason has been effective in slowing the progression this last year. When that stops working I am out of options, so I remain hopeful and continue to be hopeful that I am here when they approve immune therapy for bc, or that they come up with other options. My rads onco said there is a reasdn why they call it practicing medicine. With each of u having our own unique DNA, no 2 people will have the same exact outcome even when they receive the same treatment One thing I have heard from my last two onco's is, chemo is not very effective. on bone tumors. Both were very surprised at the amount of chemo I received and that hospice was recommended when there were hormone therapies that were available . I understand Tasha's thinking as I too have wondered why all the chemo when hormone therapy is more effective on the bones and less toxic, yet, I am still thankful that chemo allowed the liver to clear, but why not go to the hormone therapy rather than so long on chemo with so few good days. Now it may be too much to give it to me again.
I wish that some oncos were more up to date on new options.

natly15

carkris said:

it is so frustrating to go

it is so frustrating to go through all that have side effects and for it to not pay off. Unfortunately it is still a crap shoot, and it takes its physical and mental toll on us. They simply havent been able to make the determination of who it would benefit . In the 20 years since my first diagnosis, there has been progress but we need more and we need it quickly. I am on my second primary, and I took chemo, I had to feel i did everything i could. I have neuropathy and I struggle with menopause and chemo brain. I dont know if it worked either. I think someday they will look back at the barbaric way we treated cancer when they have better treatments. Like using leaches in the olden days. hugs

Carkris I started chemo Oct

Carkris I started chemo Oct 6, 2009 and finished March 30 2010. Chemo takes it's toll and it is barbaric, but it is better than the alternative. I agree cancer treatment is a crap shoot. We need to gather info and make wise decisions regarding our individual treatment. I'm 5 years out and doing well. I've had dips and turns since 2010 but I'm still here to talk about it.

 

nfu

Tasha,Sorry to hear that,

Tasha,

Sorry to hear that, but I agree.

I was railroaded into the OR the first time around. Also, completely wiped out. My life was without a safety net most of the time and this finished me off.

Now, it's back. I'm not doing treatment because I can not tolerate it, and am without help, a support system, and money. In a way it's a blessing. I can't do three more decades like the past one. I'm merely existing. Docs been doing things to me from birth. 54 years. Enough. I'm done.

It's not how long you are here, but what you do with your time that counts. There are two, significant things from my career that I am proud of. Had to do with global healthcare (AIDS crisis in '80's) and (greatly expanding access to eye care).

I am not afraid and am at peace with my decision. My onc was heaping on the guilt. They are so focused and can not step back and look at you a a whole person. Like lawyers that must win all the time, no matter how many get their life destroyed.

I deal with enough pain, don't need to heap any more on. Nobody is going to help me. To keep me going for years would be flat-out cruel. Why would I want 4-6 more years of tx? I may not make it through. If I did, I'd be more debilitated than I am now. My prognosis is 6 months to two years. A bird in the hand is worth.....  I'd rather enjoy my time left--now. And it isn't going well with the usual battle for access to healthcare. And they want to know why cancer patients check out sooner? I just want my pain controlled. 5 years of it getting worse and worse. I do not intend to spend my last days like this. I'm going to an NIH Cancer Center next week. Either they get on the ball and I get the Palli. Care I need going back years, or I'm outta here.

There was an editorial in the NY Times a few days ago about how doctor's are adding to the suffering of their patients. This fits well.