It's Back :-( Hugs & Help Please!

I read these posts and just couldn't say nothing. When I was diagnosed all I could think about was I don't want to lose my breast. I love them both!! I thought I will do a lumpectomy and rads and move on with life. Then my BS did an MRI...4 more spots the biggest being 2.5mm the smallest 1mm too small to biopsy..all cancer. A lumpectomy was no longer an option. I talked at length with my BS making the decision of surgery. After surgery I was at peace with my decision ...no rads  yeah!! my cancer was 95% FUELED by estrogen..Tamoxifen was recommended. I thought I do not want to take a pill for the next 5 years and the side effects are not worth it..I talked to my Oncologist...I told him all my fears on taking T and which side effects scared me the most..He spent over an hour going through and explaining the studies to me and gave me some information to take home and read. He said try it, if you feel bad on it or se's are too bad we'll stop. THEN my oncotype dx score came in ....Freakin' 17...the highest end of low...my final pathology from surgery came back stage II and that little 1mm tumor showed the cancer was becoming more aggressive as it hopped all over my breast. Thank god it was gone. Next decision Chemo or no chemo?? All I could think about was two of my friends who battled cancer and lost in the last 20years. One had a very aggressive cancer that once she stopped chemo took over her body (this was 20 yrs ago, she was 22) she refused further treatment as it was not going to improve her qol. My other friend was treated at JH and had a very rare SE of chemo, his body could not process it and a month after treatment he was in complete organ failure he died two months later. I was scared to death confronting the choice of chemo or no chemo. I am 43 single and no children but lots of nieces and nephews and other people in my life that mean everything to me. I talked to my BS for 3 hours then Onc for another 2 in making this decision. I looked back and thought I've come so far in my battle to turn back now. I have made lots of decisions I never thought I would ever have to make in my life. I did chemo no regrets. I have also changed to a completely organic diet, lots of supplements and daily exercises  that have all been under the recommendation of my doctors. Most cancer facilities these days have alternative/complementary medicines in addition to conventional treatment. I think there is a happy medium in this debate. A very good friend of mine was diagnosed HIV when she was 25. For two years she did a purely holistic approach. When her T cells were so low she was near death she finally gave into conventional medicine. 20 years later the disease is undetected in her system. She still balances holistic and conventional meds and lives a very healthy happy life.

My onc said to me that he can not change people's perception of chemo once they've had their own personal experience but he would try to explain why their situation was different from mine...and he did. I don't know if I will stay cancer free..I can only hope. BUT I do know I am doing everything possible to stay cancer free and live a healthy life.

MIMI good luck to you in making your treatment decision. I hope that some of the words on this thread help you in some small way.

Diane

Mollyann, Love your signature!

Julia, you have always been a big advocate of keeping your body in balance. In fact, I was one of the ones that helped you off the ledge when you first joined this board and didn't want to see conventional treatment! I was so happy to see some of the decisions you made and are hoping to hear of a baby soon, God willing. I even watched the video of you doing your photography and hope that's going well!

We all ASSumed mimi has been confirmed with a recurrance because she said so. Duh on us!

Julia, you looked beautiful as you crawled along the floor to catch the toddler in her best light! We are our own worst critics. So sad, really...

Julia -sorry to hear that you lost a baby. I'm speechless.

I'm also curious to see how mimi is doing, following the to do on this thread. That is, if she dares to show her face after the beating -well intentioned though it was- that she got. I hope you are still here, mimi. It's your thread.

No one knows what a person needs. BCO should teach us all humility. It has me. There is a thread on the friends and family forum by someone whose aunt claims to be seeing dead relatives. I swooped in, chest pounding, offering opinions about psychosis, etc.... Then all these other sisters chimed in, saying, in effect, that the aunt (who is ill with three separate advanced cancers, including one to the brain) is reuniting with family, that it happened to them or their relatives, and that if she is happy, let her be.

I don't believe in ghosts, I am an atheist - in short, I am the least supernatural being you will find, so it was far outside of my box to consider seeing or hearing things that weren't there anything other than a medical concern. But IF those other sisters are right about the aunt feeling good (and we don't know for sure) then maybe, in the dusk of her life, an anti-psychotic isn't going to do much.

Same for mimi. I don't claim to understand her choices, but the fact that she comes here means that she is familiar with the conventional options out there. And maybe she would prefer death to chemo. Before we get so worked up about mimi's life or death, we have to ask her what she wants.

I suppose one has to remind oneself that we are not all here on BCO for identical reasons. Some are here with the express intention of prolonging their lives regardless of anything else. Others are here for love and friendship. Many are something in between.

I do think it is incorrect to offer medical advice such as "you need chemo" when chemo is not a cure and, as Julia points out, we don't even know for sure that mimi has malignancies. If you have penile, testicular cancer, some other rare cancers and some childhood leukemias, yes, you DO need chemo. Chemo actually CURES those cancers. Not bc.

I don't know if we can clearly demarcate which cancers are cured by chemo and which aren't.  It seems to me to be an individual thing and for all the cancers you listed, there are people for whom chemo doesn't work.  My niece was cured -- you can use that word at this point -- of brain cancer because of chemo and radiation.  She would absolutely 100% be dead right now without chemo.  It was inoperable and had metastasized throughout her central nervous system.   But, the response rate of such a highly aggressive and advanced cancer to chemo is about 50%.  So what you are saying is that chemo doesn't work for that cancer, but for those 50%, including my niece, it works completely.  I know several people with cancers you don't mention for whom they say the chemo cured them.   I think if you have chemo for breast cancer and eventually die of something else years later, you can assume you were cured.  Most women will fall into this category.

The problem is that for most people with most cancers we have only stats to go on.  Some cancers respond better to chemo than others -- testicular cancer being the most responsive.  But it isn't a zero sum game.  It isn't chemo works or chemo fails for each category.  For some cancers chemo helps more people than others, but it doesn't mean folks in the latter category aren't cured. 

Shirley - hello, my healthcare buddy!

I didn't read Armstrong's book but his experience was truly remarkable. He had chemo and it -along with surgery-- apparently worked for his testicular cancer, which had metastasized to several parts, including the brain. I believe the brain tumor was necrotic by the time they found it.

MOTC - point taken regarding cure rates - you are right on there.

But perhaps some people who do chemo are cured despiteand not because of the chemo? An association is different from a cause-effect. Epidemiological studies and meta-analyses have found zero survival benefit from chemo for large organ cancers like breast. I know it's not a nice thing to hear, and I know some people who take chemo live to a ripe old age, but you cannot use individual experiences to refute overall trends.

In any case, IMO we have no business telling mimi to do chemo, especially when we are not clinicians and especially, when, taking Julia's advice, we don't even know for sure what the pathology of the tumours is. Honestly, until we have found a cure for BC, humility is the best approach.

From where this thread began to where it is now is amazing to me. I think mimi can definitely take some great advice from here. I hope she's reading. 

hoist123, I definitely agree with you, it is ok to do both. I believe it's a matter of choice.  I wasn't told I had choices. I had to find this out for myself so I feel very strongly about informing women that there are other options and the science to back it up.  My docs and some of those here try to force us into things by instilling fear.

Of all the passions, fear weakens judgment most. Cardinal Jean Francois de Retz.

I say, knowledge is strength.  We must make our decisions based on knowledge not fear.

People in both camps are just looking for whatever it takes to get rid of this. When chemo doesn't work, we look for alternatives...When alternatives dont work, we sign up for chemo.

We are all trying to tip the odds of this crap shoot we have been thrown into.....

Amen to that!

Mimi, there are different chemo regimes that you could research.  CMF for example is a first generatio chemo and not as toxic....this would be better for you than no chemo. 

Also, have you been on the Crazy, Sexy Lifestyle website with Kris Carr?  Very inspirationsl  There are integrative cancer centers that utilize both conventional and alternative together....maybe you could look into it.