this discussion only concerns my situation and perhaps may apply to some of you stage 4 cancer babes too.
there was an article in the ny times yesterday and in other papers stating that many people are overtreated for breast and prostate cancer.sometimes they suffer med side effects when not necessary and have poor quality of life.
i have 2 oncologists, one in ny, one in san diego who coordinate my treatment, with the ny doc in charge.
i am now on xeloda and go for monitoring every 2 weeks.
yesterday saw the san diego onc. he called us {my husband too} into his office, opened his computer and discussed my case for an hour.
i was shocked that he expressed disagreement with my treatment , echoing the article.
feels that i should get my scan when i get back to ny{scheduled for oct 28} and then think about this .of course if there is a great progression the point will be moot and i will stay on this chemo or the next in line.
he feels that so far my cancer has been slow growing, even though the lung mets always progress and no meds have succeeded in stabilizing them.had a bone scan and that was clean.
he thinks that the chemo is too radical at this point and we are using our big bullets too soon and they won't be effective at a later more virulent stage.
feels that chemo is spoiling my life quality {altho xeloda is not bad}.
believes taking a med vacation and watching and waiting would be good if this time there is shrinkage or stability.
naturally, i got confused.
today i saw my internist for a minor procedure and asked him about this.he concurred, having read all about this in the medical journal too.
i said i would discuss with my onc in ny. he replied that they would never go for it,being a cancer hospital. "that is their business"
i thought of going for a 3rd opinion to md anderson or ucla and he said "they are also in the same business"
of course i am praying that my scan is good and trying not to get crazy with this new wrinkle.
of course i have had fatigue,pains, loss of sleep and many of the symptoms you do.
but....what do you gals think? i believed that at stage 4 we went from one med to the next managing our cancer like a chronic disease.
on the xeloda, i have put on 20 lbs. never was this chunky in my life. the internist thinks i will drop dead fom a heart attack before the cancer gets me.{hi colleen, i know this happened to you and now i get it.}
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what would you do?my head is spinning.
- By curlee
- Posted October 23, 2009 at 5:17 am · 11 replies
- In Taking charge: Being a proactive patient
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11 replies
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- By Beachbabe
- Posted October 23, 2009 at 5:22 am
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I read the NY Times article and felt a bit victorious actually...FINALLY the big guns like ACS are publicly saying what many of us knew all along...the cry for early detection is pretty much a bunch of b.s.
It sounds like you most assuredly are caught in a sort of time warp between East Coast and West Coast. I am so sorry to hear your pain and confusion...of course you want to bid a fond adieu to Xeloda, but at what cost? Maybe you should go for another consult in the midWest and find an onc who is somewhere in between (kidding, I am kidding). All I can suggest is for you to do your homework and go with your (ever increasing) gut. You're a smart cookie, you'll make the right decision.
((hugs))
- By curlee
- Posted October 23, 2009 at 5:36 am
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dear beachbabe,
i fear stopping treatment for a while . that is what my gut says and that is the confusion.
how tempting is the apple of no chemo!!!! but....would it be poisoned, snow white?
or is the chemo more poisoning?
who to trust?
today we have to do all our own research.
recently i had 2 opposite opinions on back surgery from 2 eminent doctors.one said, if you don't get the operation, there is a 25% chance of paralysis. the other said "let's monitor this". i listened to him of course. back surgery is no party.
turned out one of the cysts squeezing my cerebal spine dissolved and the threat was gone.also the pain ,numbness and tingling.
it was a crap shoot ,but i trusted that doctor more and i was lucky.
wish my daughter was a doctor but alas, no relatives in the profession.
- By crazygracie
- Posted October 23, 2009 at 8:57 am
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all i can tell you is that i was torn between two opinions at one time, and our dearest beach babe simply said to me 'go with your gut' and she was right. sometimes i read sooo much that it just gets too confusing. luckily, i really do trust my hometown onc. and he never gets upset when i want a second opinion. to me, that is the key . . . total trust and respect for your main onc.
best of luck to you
- By margaret27217
- Posted October 23, 2009 at 11:07 am
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Curlee,
I agree with Colleen: "You're a smart cookie, you'll make the right decision." I would like to add that despite your ever increasing gut, you should also EAT a cookie while you make your decision . . . just seems to make decision making so much more fun!
You are correct that we are having to do our own research and that's the beauty of living in 2009. Back in 1997 when this thing first bit me in the a**, there was no research for the patient. We just saluted the almighty doc and did what they told us. I am much more hopeful now because there are so many more options. Back in 'the day', not so many.
I love you!
- By maxnan
- Posted October 23, 2009 at 12:05 pm
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I think it's a crap shoot for the Oncologists, too. I was bothered by the fact that this Onc didn't think that other Onc's would do what is best for YOU, based upon their experience and current technology/studies, because "they're in the business"?? What, exactly, did he mean by that? He's not in the business? If it were me, I think that I'd call him and ask him exactly what he means by that and what is he insinuating - that these Onc's will make money on your staying on chemo????? I'd want that to be much more clear.
As I said, it's a crap-shoot for the Onc's, too as everyone's cancer is different and so they only have their own experience, combined with current studies, to go by.
The other thing I was surprised at is that he seems to be "poo-hoo'ing" lung mets that is continuing to grow????? I'd be leery about that, and would also ask him why he feels that even with it growing, he thinks you should just ignore it?? That's not a little thing to be ignored in my book... BUT, I am by no means a doctor and as everyone said, you need to follow your gut and do what you think is best for you. Call this doctor back and ask a LOTTTT of questions, then call your other Onc and again, ask a LOTTTT of questions, and your gut will then speak louder to you.
Good luck and please keep us posted.
- By hillbillygirl
- Posted October 23, 2009 at 1:45 pm
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I recently changed to markey Cancer for this very reason. my local onc. kept wanting to go all out on chem. and i had not been on any hormones at all and i am only E+ so i changed to a cancer center and they are like i dont understand your treatment and put me on hormones. Just keep asking questions and follow your gut. you go girl
- By Shanti
- Posted October 23, 2009 at 2:11 pm
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You are definitely in a difficult situation and one that I can relate to as I also see two oncologists, one locally and one at MD Anderson in Houston.
I agree with the previous posters who said that you need to trust your "gut" instincts as this is your life and your treatment. I am not sure that the over treatment in the article is about people who are already metastatic. Wouldn't that type of problem be about treating early stage cancers too aggressively? How can you be too aggressive with mets?
I do have something to say about the doctor who seemed to disparage the cancer center as not being trustworthy because "they are in the business". I also ran into this from some local doctors. I have been told by a local doctor that at MD Anderson, "you are just a number". I didn't bother arguing with him because I realize that they don't know what they are talking about. The last time I saw my oncologist at MD Anderson he started the conversation by saying, "I've been thinking about you a lot." I want to tell you that made me feel very safe to have one of the top oncologists at one of the top cancer centers in the country thinking about me a lot. And then he went on to suggest a maybe controversial less toxic treatment option that my local oncologist would never have risked in a million years.
I spent a year on Xeloda and while there were some side effects it was the most like normal life that I have experienced since my dx. When the oncologist at MD Anderson suggested I go on Xeloda my local oncologist at the time argued that he could give me 5FU in an IV form and that if I continued to go to MD Anderson then he wouldn't continue to treat me. Needless to say I changed local doctors and when I think back on why he did what he did I think it was because if I was on Xeloda which is a pill, then he wouldn't have any income from giving me IV drugs.
So from my experience when a doctor that is not involved with a cancer center puts down the more highly regarded cancer center then he is the one that has a negative attitude that might be suspect. I would imagine that he has never spent any time as a student or an employee at a major cancer center and he doesn't know how they operate. I would wonder if he has formed his opinion from personal experience.
Keep us posted. We are behind you all the way.
Terry
- By beebie
- Posted October 24, 2009 at 11:30 am
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Keep getting opinions. I sought out 5 different docs when I was first dx'd since there was initially very different opinions on treatment from the two docs I first saw.
Each time you meet with someone you learn something else. Sometimes the info will go against your gut, other times confirm what you believe. Sometimes the docs will be begin to line up on one side or the other. If you have the time and patience keep asking the questions until you have an answer and direction you are committeed to. I finally had two against two and let me local onc break the tie! I am glad I saw and spoke all the docs, I continue to check in with them in order to be available if a new trial comes up or any new treatments look promising.
Sometimes the docs make you feel like you have to rush into a new treatment or surgery like...next week. Why not take the a little extra time to come to your own conclusion and comfort level. Especially if it is slow growing, you dont have to act tomorrow.
When I was told that the hormonals were no longer working and that I had to start chemo, I took about a month to investigate my options, asked for different opinions and then went on a vacation before I committeed. I am so happy I didnt let anyone pressure me, what ever little control we have over this disease we have to hold on to it. Making your own decisions is one of those things for me. your sister in C, b
- By ious1Tjed6247
- Posted October 24, 2009 at 11:55 am
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Maxnann is on the same page as I am. Get Answers.
I could go off in a thousand different directions right now as I feel your state of spinning/confusion...but I just want to say/share one thing or a word of 'caution' I've learned.
I've often posted here more specifically in Pleural Effusions as my daughter, who has since passed, was given advice/info by local Onc. & Pulmonary hospital Docs - that her continuing on needing additional tx. (chemo....) would give her limited time after she'd had a procedure done a VAT - video assisted thorasic pleuradesis). That maybe six months max at best. They told me .....however, that the Oncs. @ UCLA in CA won't give you that sentence because they are in the "Life" extension business.
Their suggestion was to put my daughter in Pallative care.....after the Talc Pleuradesis Procedure! (It failed). Also they lamented, that it is costly for a patient w/this diagnosis to society when eventual demise is at ones doorstep. They assured us that comfort was their main concern.
My daughter and I said ....no thank you and went w/our gut....and told Oncs. that at UCLA.
We had an additional four months for which I will ever be grateful and have NO regrets of not listening to
"those "professionals who see and value life differently than I. It was "our" call......not theirs.
Sometimes listening to "their" call......doesn't resonate with our gut.
I wish you the best of the best in making your decisions after all this is YOUR life and no one elses.
I am between CO, NM and CA constantly advocating now for MBC awareness to anyone who will listen & hope to put on a different FACE for all of our loved ones who are in a better place and also for those currently engaged in the fight in the Metastatic Community....as a mom to an Alligator who was taken from life much too soon but who taught me what "courage" really means.
((Hugs)) Tara
Tara
- By curlee
- Posted October 24, 2009 at 12:07 pm
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hi dear alley cats,
i thank you for your wisdom.
it was an internist who called the cancer centers "in business" and not one onc against another.
i will investigate as you say and follow my ever bigger gut.
thank you
love you all. you are my most wonderful support. you get it!!! no one else knows what the alligator wrestle is about.
so grateful to know you all and many blessings on the journey.
hopefully there will be help for all of us.
love
- By stef67
- Posted October 25, 2009 at 12:49 pm
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I am a new member and I had read your article and wanted to respond I have had stage 4 breast that mets to my bone for about three years now. I to was told by my onc that for now, we dont have to use any bullets that being chemo, because I guess am somewhat "stable." My treatment is femara and every two months zometa. He told me that there are so many different kind of chemo to use when we need to. Not sure when we will know that. I have did and had the second and third opinions and what I have learned from it..... I think it becomes the "business" the one cancer center in phili had me on so much medication that when I went back to my original onc he said I was on so much meds there was no way we could no what was working and what was not, which made sense.
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