WHY would I put myself through this?
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First post from a new person - welcome NoWayJose (???)
True, there are no guarantees. However, it is VERY DIFFICULT as a newly diagnosed person with NO training or background to educate one's self and make informed decisions when thrown into this new world. No one needs to 'put' fear into the hearts of anyone - fear comes along with a cancer diagnosis. I believe it is VERY difficult to separate our fears from our 'gut feeling.' This is not about buying the red car or the blue car, or getting your hair cut short or leaving it long. This is potentially life/death decisions and it is SO important to push past our preconcieved notions, our own fears, alarmist stuff we read online and come to a place where we use WISDOM.
For me, I chose to trust the professionals who have spent their entire working lives studying and treating this disease. I wouldn't say I was 'happy' with that decision, but I have confidence in it.
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After I was diagnosed but before I started everything I went to see my primary care doctor specifically because he is wise! It really helped me to talk with him. He wasn't involved in my treatment but had perspective and a calming influence. I am grateful to him for his kind words of advice.
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Great words AmyIsStrong...I totally agree.
And Omaz~
I kinda did the same thing with my oncologist. He is very wise and was able to give me great advice and listen to my concerns. He and I have had many heart to heart conversations that are hard to come by with some doctors.
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How ya doing Gray lady?
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Lady grey,
I think we all have to struggle with treatment options. We have to choose between a lump or mx. Do we remove 1 breast or 2.? It would be nice if there was just one treatment plan that needed to be followed and that's what you did. For me, I had to then decide on which chemo treatment to follow. Do I go more aggressive or less? I never had to decide if I was going to have treatment or not, as I knew that I only wanted to do this once and not have regrets. I've now just finished tx 2 out of 8.
We all have choices to make and it's not easy. I wish you clear insight into your decision and that peace of mind comes with it. -
Impositive,
I'm sorry if you feel that anyone who doesn't agree with you is automatically hostile. I don't even know you, so I'm not sure how you make that leap, aside from my postings in response to your statements that you continually put forth as "truth." Here are just a few from this thread alone (never mind the fungal theory thread which at one point had you blaming a woman's fatal car accident on too much fungus in her brain...not the vodka and pot strewn around her car). But I digress, here are just a few statements you have made recently:
1. LadyGrey, THERE ARE ALTERNATIVES TO CHEMO! It isn't a matter of doing chemo or nothing at all. Many here will tell you that and they have good intentions but its just simply not true. We have choices, especially at our stage in the game. Once our bodies have been damaged by these "treatments", our choices become much more limited. (huh?)
2. Your cancer has been growing in you for years. Any doctor will tell you that. (and how does that apply to all cancers? Sure, some may be slow growing, but other, more aggressive ones are quite fast)
3. I have read that each mammogram increases our bc risk by 2%. (that makes no sense if you put the numbers together)
4. I have read that chemo's overall success rate is about 3%. I would venture to guess that if stats were kept on alternatives, we would probably find at least that. (again, totally misstatement)
Now, I know that I'm not going to convince you of the falsehood, or misleading qualities, of these statements. You believe in what you want to believe and then find something on the Internet to back it up, although I do have to say it's a bit ironical to speak about others not being able to "think outside the box" while you have such a tightly controlled box around your own thoughts!
What I'm asking is that perhaps you can put forth these "beliefs" not as statements, but as "in my opinion." Like it or not, however smart some people are, however much they understand that they shouldn't take medical advice over the Internet for such a serious disease as cancer, some people do. And I saw it again, sadly, today, where a member continues to refer to her recent diagnosis with another cancer as an "infection" once more. You may believe what you want to believe, any number of doctors or others can point out the absolute fallacies in some of the logic, and it's certainly your right to believe so strongly in what you believe in. But all I ask is that you try to insert some "I believes," or "my theory is that..." We are not supposed to be giving out medical advice here on BCO. And I'm not persuading a person to do one treatment or another. I will however, continue to post when I see such glaring errors and statements, from you or any other posters.
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I do want to add that the statistical drop in recurrence for various treatments in the statistics are not just numbers plucked out of thin air. They are there because of brave sisters who went before us (with Herceptin, no too long before us) who put their own health and lives on the line by enrolling in clinical trials to see what dosage, what time frame, what intervals etc. etc. would give other women (ie YOU and ME) the best chance of making out of our BC treatments both alive and well!
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I've been watching this thread with interest and irritation. Am happy to see it hasn't devolved into the brawls that happened earlier this year.
I won't name names, but I have to make some observations.
I think it is highly egotistical --the worst kind of attention seeking behavior-- to make outrageous claims about "conventional" medicine and then expect a Greek chorus of approval from women who have worked hard to save their lives. I admire the honest, earnest, women who spend lots of time debunking conspiracy theories, and other disengenous thought/mythmaking/navel gazing - but also want to say: don't waste your time. This is what some women want! They want you to engage in this so called dialogue so they can, perversely, cling to their decision and philosophy. (it's called the "help rejecting complainer" in clinical professions).
Lastly: no one should EVER make any medical decision based on this board. "Conventional", "alternative", whatever end of the spectrum: for God's sake, do your homework and talk to the doctors. Find a 2nd, 3rd, 4th opinion if you can't wrap your mind around the protocols. Better that than hours on this board spent trying to convince yourself --oops, I mean others--- that you are doing the right and safe thing.
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ElmCity - I've noticed the same thing - well said!!!
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At the risk of sounding like a bully, I agree !
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Wowee! Lots of strong feelings out there! I've found that if I approach all interactions with the conviction that the other person is doing the very best they can, disagreement may persist but conflict is lessened.
So, as promised, here's my summary of what my oncologist said:
1. HER2+ is dispositive. You have it, you get adjuvant therapy. She didn't out and out say that (see below) but that was my takeaway. I raised the 1-5, 5-10 mm treatment issue, throwing around numbers on the distinction, secretly hoping to trick her later by pointing out the 6mm couldn't possibly be 6mm of HER+, and, therefore, I was on the lower end such that chemo is unwarrented. "Yes," she said, "that was our study." Well shit -- that was my the centerpiece of my argument. Unlikely that I can use it to successfully undermine her recommendation.
2. My tumor is scattershot -- the ER/PR+/HER2- bits are laid back, pot smoking, sunset loving, Bruce fans who might get around to checking out the surrounding territory someday, while the ER-PR-HER2+ bits are weaponizing to take over hostile contiguous countries. We didn't talk about the DCIS.
3. Breast cancers are like that -- a bit of this, a bit of that. The pathology reports reflect the distinct characteristics that amount to action items. My pathologist communicated that he didn't like the weaponizing bits AT ALL by phrasing things a certain way -- I'm a student of words and I had to agree as the word choice and level of detail struck me as odd (seeing as how I have SO MUCH experience with pathology reports.) "Why are there so many 'negative, unfavorable, suboptimal, FISH Panel prognosis: unfavorable" comments? She knows the pathologist and said he was making it clear he doesn't like the look of it.
4. My invasive component is 6 mm, some of which is the laid back bit and some of which is that weaponizing kind. Both kinds were added together to reach the 6 mm number, although I don't think it is nearly that simple. There is no way to break that down to what percentage is what, and if there was she wouldn't trust it and would recommend adjuvant therapy because of the HER2+. (You will start to see a theme here.)
5. With my profile, my risk of recurrence is 15-20%. In general, the risk of recurrence is 10-15%. I'm not sure why mine was pegged higher.
6. Adjuvant treatment reduces my risk of recurrence to zero (seriuosly, she said that). The chemo dials down the reactivity such that the Herceptin can kill the cells.
7. She recommends TC (Carboplatin), 4 infusions every three weeks, and Herceptin 1x/week for six weeks then monthly to complete one year. Because Herceptin is an antibody protein, she likes to get the blood level up quickly hence the 1x/week for 6 weeks regimen -- don't you just love the way I said that like I know what it means? I hadn't seen the 1x/week for six weeks protocol before.
8. Neulasta is given the day after each TCH infusion. Bone pain is generally felt only after the first one and can be handled with Advil. No mention of Claritin and I forgot to ask. Overweight women are more likely to experience bone pain.
9. Side effects:
a. Nausea is licked. If drug A doesn't work, drug B will. Drugs are taken on a preventative basis.
b. The short treatment period puts my risk of neuropathy, eye problems, and finger/toe problems at zero.
c. Fatigue: week one, 75%, week two 85%, week three 90%/normal, then back down with the next treatment. The best antidote is to exercise -- I think exercise cures pretty much everything so no need to sell me.
d. Cold caps work. Like for real. They have a cold cap "Angel" who spreads the word and and helps women use them properly.
10. I need not be concerned about cardiac issues. The statistics are international so the level of care is uneven, and overweight women are more likely to experience a decrease in function which rights itself when treatment is over.
11. The ER+ bits, she placed at 3-4 mm (do the math -- I'm down to 2-3 mm of HER+, added to together), but size didn't really matter as her recommendations would be the same: Tamoxifin for two years then the one that starts with an A for three, reducing my 5% risk of recurrence to zero. That treatment will also reduce the risk of a new cancer on my right breast.
12. I asked whether the TCH would wipe out any cancer that is my right breast. She did answer me, but I have no idea what she said.
That's all I have for the moment.
I have to admit she was remarkable. I went in with about the worst attitude you could have -- not only was I not going to do it, everyone who suggested I should was my avowed enemy, and by damn I had every single article printed out and indexed to back up my position.
Not only am I going to do it -- I hugged her at the end of the meeting. I don't hug strangers.
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Elmcity, I wish we could recommend posts here, because I would recommend yours. What a bummer to hear defeatist, negative s*^# in the midst of battle for our lives.
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LadyGrey - I'm so glad you liked the onc - she sounds really really good.
I actually had an undiagnosed cancer in my other breast while I had TCH - it didn't kill it - it was a lower grade and lower grades do not respond to chemo generally. BUT, it was a type that is often found in lots of nodes - my node status = 0. It was HER2-ve but hormone receptive. I asked my onc if the chemo could have kept it under control and could it lower the grade and he said it could. So, in a way I was lucky it hadn't gone crazy.
We are all here for you, if and when you get any SE's. We don't get Neulasta over here and I made it through without it. I got bone pain even without neulasta - just the taxotere caused that. The daily claratin and pain meds really helped.
((((((((((((((((HUGS))))))))))))))))))
Sue
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TLG - Awesome Onc - So happy you found someone that listens and communicates well!! Best wishes to you!
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TheLadyGrey,
Wow! So glad to hear your meeting with your oncologist went so well for you! Sounds like she was great at explaining everything, her reasoning, taking as much time as you needed, and your head is in such a great place! What a beautiful post to read and I am so happy for you!
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Lady G, how graceful of you to return to this thread to let us know how well you are being treated - that your concerns were met head-on and even alleviated. All the best to you, sweetie!
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TheLadyGrey Thank you so much for letting us know how your appointment went-I think there is a collective sigh of relief here that you got some definitive answers and a plan. Fewer chemo cycles will mean less likelihood of any long term SEs. The short term SEs can be managed as/when they occur and we have lots of tips for that (head over to the Taxotere, Carboplatin and Herceptin thread when you are ready). Your MO sounds like a wonderful ally.
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TheLadyGrey~
I am so pleased to see your oncologist mention the Cold Caps and that they work!
I used them about 2 years ago with TCH and I kept most of my hair.
I know some do not agree with them but my oncologist researched the heck out of them before she would allow them in her clinic.
Good thoughts coming your way...
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TLG - so thrilled to read your post. I mean that truly. I can't even express the emotion I felt reading your post. That onc sounds like a perfect fit for you. It sounds like she gave you a lot of time, truly listened, addressed your concerns and spoke in a way that worked for you. Again, I am so glad.
That being said - I would like to invite you over to our TCH thread (if you haven't been there already). There are many pages of historical info from many women going through the same regimen. It is extremely helpful. WHATEVER side effects or experiences you have, someone there will be able to help you. Second, there is a new thread that starts monthly for women starting chemo that month. They will not be all on the same protocol, BUT they all go through it together. My April 2009 group is still active daily as we support one another through the various elements of life after treatment. I encourage you to join the thread that starts the month you start.
Any questions, please feel free to PM me. I did 6 TCH and a year of Herceptin, so I have been through it.
Proud of you -
Amy
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I'm sitting here still smiling since before my lunch hour!!! My onc is one of those special ones who tells it like it is and really cares about his patients. So glad you have one like him.
Sue
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TLG - So glad you have arrived at a decision with an oncologist you feel is trustworthy and has communicated so well with you. It is easier to take the bull by the horns when you have a definitive plan in place. As I read your most recent post, I just want to say I would still ice my fingers and toes even with only 4 tx. It is easy to do with frozen peas, and why take any chances. Some folks have nail issues fairly quickly but it is quite rare. Also, ask your oncologist about taking L-Glutamine, Acetyl L-Carnitine and B-6 to ward off neuropathy. Many of us had tingling of fingers and/or toes after the first tx, which resolved by the next. I felt that this combination of supplements (approved by my oncologist) helped me avoid any permanent neuropathy issues even with 6 tx of TCH. I echo the other ladies - come on over to the TCH thread - lots of great info and encouragement.
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Sounds like you have a great oncologist. I was so relieved to read your post. Like someone else said, making the decisions is the hardest part.....then you just get it done. All my best! Ruth
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LadyGrey, so glad you found peace in the midst of your storm. I agre with Ruth, deciding is the hard part. Good Luck to you!
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So glad you have a plan that you are good with!!!
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Lady Gray-Bravo for doing your work and for making a decision. That is not an easy step no matter which way or combo of things you select. You are sounding much better and empowered, and I am just a bit less worried about you after reading your last post. Still gonna keep your candle lit and continue to send light for the next portion of your journey. The ladies on these boards will hold your hand through it all, no matter which things you do or do not do. You are strong, and you will come out the other end with a changed perspective of the world with out a doubt, You will also find out who really loves you.
Best wished dear
Merilee
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Lady..I'm so smiling
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TheLadyGrey, I'm so glad that you finally found the doctor that you've been looking for! I know that you haven't been too pleased with some of your other docs through this experience but it sounds as though you've got a winner with your oncologist. I'm glad that you went in armed with a bunch of questions and all your objections - this board is great at helping prepare that way - and it's wonderful that your oncologist answered all your questions and addressed all your objections. That's what I was hoping would happen - and I had my fingers crossed that you wouldn't run into some grumpy or arrogant oncologist who'd be pissed at having an intelligent patient who wants answers and explanations before deciding on her treatment plan.
So glad that it worked out. Now, on to the next step in this delightful
journey! -
LadyGrey - Excellent post how you outlined your possible treatment plan with a WONDERFUL oncologist. It makes the world of difference when you can openly communicate with a medical team and feel they are on your side sharing information. So many of us are in a tail spin and over whelmed without taking the time to collect more information/facts and interview several Drs until we feel comfortable to go ahead with a treatment plan. Wishing you the best for a speedy uneventful recovery!
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TheLadyGrey -
I have been lurking in your threads since the beginning of your time here, and always been impressed by your intelligence and fighting attitude. While I've been a little worried a few times that you might be throwing in the towel, you've always pulled it together and taken charge and made the right decision for you.
I'm so glad you found a doctor you like and respect, and glad you pushed on with your questions and research until you felt that you understood and believed in your treatment plan.
Good luck
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I'm very appreciative of all of your good thoughts and support and for the information this site provides. It would have taken me months to locate and digest what I have learned in a matter of weeks.
I consider this oncologist like a force of nature -- go with her or get out of the way. Very high energy and extremely observant.
Here are some additional things I recall:
1. Oncotype scores are for ER+ borderline cases where chemo is a question mark, but HER2+ calls for adjuvant therapy (remember that theme?) so scoring isn't relevant.
2. Cytoxan is not FDA approved for TCH and there isn't much SE difference between it and carboplatin. I'm skeptical about that, but I think that adherence to protocol in the absence of a compelling reason to deviate is one of the prices paid for being treated by a national name.
3. It is acceptable to wait 84 days after surgery to begin treatment. I have no idea why they came up with that totally random number.
4. Lymphovascular invasion didn't matter to her as the tumor is HER2+ so adjuvant therapy is appropriate in any event (that theme again....)
5. The weaponizing HER+ part of the cancer is ER/PR- so hormonal therapy is not helpful.
6. There have not been any trials for Herceptin only. She said that after Herceptin was approved, the researchers at MD Anderson went back to study the outcome in small HER2+ tumors that did not receive adjuvant therapy and were shocked at the high rate of recurrence. It had already been established that treating women with HER2+ tumors greater than 1 cm with chemo plus Herceptin resulted in markedly lower rates of recurrence, so that protocol was adopted for smaller tumors where adjuvant therapy is recommended.
WIth chemo + Herceptin, the risk of recurrence with small HER2+ tumors dropped from 10-15% to near zero. Doing a trial with Herceptin only would be ethically difficult given what the medical community knows about the efficacy of chemo plus Herceptin. It is unethical to continue with a trial when it becomes clear that a class of participants is experiencing materially better results, the idea being that all trial participants should be offered the superior treatment.
The long and the short of it is that we aren't going to see a Herceptin only trial for invasive disease, at least not any time soon. I think she said Dana Farber is putting one together for DCIS.
I'm forgoing a second opinion because what I want is for someone to tell me that the risk/benefit analysis weighs against adjuvant therapy except I know how to read. This oncologist is offering the most palatable regimen (except for the Cytoxan) which guarantees no recurrence (her words, not mine). A different oncologist might have either (1) a less absolute prediction, or (b) a worse regime in which case I am back to square one. The whole point of this exercise is to buy peace. Of course I could change my mind about all of that in the next five minutes!
I can't believe I have ER-PR-HER2+++ AND ER+PR+HER2- cancer. Seems statistically unlikely -- so far, statistics haven't been very friendly to me and I do wonder about buying into a system which is 0/3 in terms of predictive value. I worry that because I happen to like this particular statistic (15% to 0%) I'm being too quick to use it as a basis for my decision.
On the other hand, my kids will probably try to have me declared incompetent and take over my affairs if I decline. They are young enough to still have absolute faith.
Again, thank you all for lending me your support, insight, and education.
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