Team ILC Warriors
Comments
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Hi Dianne! I definitely agree about the surgery. I did have surgery this past January 16th...double masectomy with immediate DIEP. I had all of my lymph nodes taken out on the cancerous side, 7 were positive. I am controlling my estrogen naturally thru DIM, iodine protocol, diet exercise and refraining from estrogen foods like dairy, conventionally farmed meats etc...but, like was said here previously...our bodies will always continue to make estrogen regardless. I think it's all a crapshoot...which is exactly what my oncologist said at UPENN where I had my surgery. I didn't go to NOLA. My breasts are a little assymetrical, so hopefully they can fix that in stage 2.
I really, really feel things work differently for everyone. Like I said before, I know women who have done chemo and survived 20 years, I know women who have done chemo and passed soon after, I know women who have survived holistically for 20 years. I am thinking of applying to Dr. Nicholas Gonzalez's treatment center in NYC. He is a conventional and holistic doctor with an awesome track record of keeping cancer patients in remission for long periods of time...Nice to have you here!!!
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The 2nd stage makes all the difference in the world! I was happy with how my stage 1 breasts looked, but they are wonderful now. I've been very pleased with my results, even though I had a very rough year surgically to get here. All worth it in the end for me.
We are very fortune to all have many treatment choices available. If one choice were perfect, there would be no more cancer!0 -
I totally agree with you about treatment choices...this is why I feel sharing info is so important...I know I do get carried away sometimes in my beliefs.
So happy you have awesome results!!!! I am hoping for the same...wish I could afford Nola.
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Claire, I just want to send you a hug for your reasonableness and ability to articulate. :-) Proud that you are a fellow Zonie!
Momof3, I have one or two more fills and feel like I am ready to burst! Not sure where to space is going to come from. It has been 3-1/2 weeks since I got my itty bitty expanders and I am still taking a percocet at night. Just very uncomfortable and I am pretty good at pain. After my last fill, I actually woke up crying in the night. :-( Knowing I have 4 more months seems a bit overwhelming.
However, the new girls look very good and I am optimistic about the final results.0 -
Dianne- Welcome, we are glad you are here. I am sorry to hear you lost your sister, also happy to hear your other is here 20 years later. And I hope the other one never has to deal with any of this.
You all have been busy..
We are all so spirited in how we feel. I wish I could trust the holistic approach but I have read alot and I do beleive it is for some but not for me. I may choose not to take the tamoxifen but I have time to think learn more before that choice. It sounds to me that many of you are doing a mix of natural and conventional. I think I fit in somewhere in between also. I do have a problem with all the Pink crap I see, it makes me mad. All that money and although there have been steps in the right direction too many women are still dying and younger and younger.So here is my update, I called MO today for BRCA results, nurse called me to say He is on vacation!! My results are in a sealed envelope on his desk, I asked the RO to go and open it and he wouldnt do it. I have to wait till Monday. I know I cant blame the doc for taking a long weekend but really?? Here I am waiting endlessly and he is the only one with the magic hands to open it? Ive been really feeling depressed tonight. I still made my appt with RO to get sized up on Monday afternoon. If BRCA is positive I will cancel and call the PS, I am sure I will wait forever for that appt also. My life is on hold right now waiting TX. I know I am blessed and have to be grateful but feeling pretty let down. I am eager to get the show on the road.
Have a wonderful night all of you. Your in my prayers.
Joellelee- your one of the sisters here I am glad you stayed.
xo
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Lemon68, we are here for you. I can't believe you know the results are in but you have to wait. I dislike the pink crap too--so many of us call it "pinkwashing", making light out of our condition and thinking that if you slap a pink ribbon on a box of Special K or a pink magnet on the back of your car, you've done your duty to find a cure...
Kestrelgurl, thank you, hug back from the North Country, and the falcon and hawk are my totems
! I'm grateful for all of you. I still remember my surgeon telling me that my cancer was "rare", like I was 1 in a million or something. I freaked out. I'm glad to know that I'm not the only one out there, and that we consider ourselves special or simply "less common".
Namaste, everyone. Good night from Arizona...
Claire
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Lemon, so sorry you have to wait. That is agonizing! Maybe some fun weekend distractions are in order? I am thinking of seeing a funny movie. :-)
I am glad to have this group. It is nice to have differing opinions along a common thread. Thank you for starting it and welcoming all. :-)0 -
Thanks, Lemon! So sorry your wonderful thread got out of hand!
Believe it or not...I am NOT completely holistic myself...I am very much intrigued and try to research everything. I did do the conventional surgery. I am still on the fence about Tamoxifen..(and...as my siggy states...I am anti-chemo/rads...or maybe just scared to death of it??? haha)
In the meantime, I do take DIM and iodine protocol to control hormones, if that's even possible?...until I can get my head on straight and figure out what's best for me...this DIEP was not easy and still on painkillers at night.
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Diane - sorry about your sister - sadly BC is moré aggressive when you are younger
Can i ask about your GAP as this is the only recon i want or am really suitable for - what was recovery time like? Results? Did you have expanders pre op?
For me this debate is about how nearly imposible it is for us to decide as so much good research contradicts another study.!!
I hated the idea of mutilating surgery but knew it was right, sadly and that is the most important treatment0 -
Joelle, when you say that chemo is not effective in ILC, what exactly do you mean?
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Lily, I do think it is extremely difficult for most of us to evaluate medical studies. It seriously sucks, IMO, that we are suddenly thrown into this, feet first, and need to make life or death decisions, often with little knowledge.
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It is extremely difficult when it comes to the research and there is alot of bad research out there. As you said sometime good research contradicts itself.. but when that happens there is usually a difference in sample or methods or confounders ?
The best research is nearly always a systematic review but even then.. it depends, what were the inclusion exclusion criteria and many other things. When it comes to ILC there actually isnt a hell of alot research there in comparision to IDC. Although as the rates of ILC increase and more younger women getting it there has been an increase and calls for more research.
ILC does respond to chemo. There there are many factors that effect responsiveness not just type or grade.
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I do think surgery is the most important treatment! @ momine...4 different oncologists, radiologists and breast surgeons from 2 reputable hospitals told me about the ineffectiveness of chemo for ILC. ILC is s slow growing cancer in comparison to others. Slow growing cancer cells open up too slow to gobble up enough chemo to benefit. They highly recommended hormonal therapy. MD Anderson just did a prominent study on this very topic and concluded the same.
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Lily, the gap surgery was actually not bad at all! I had surgery on a Wednesday, out of the hospital Sunday and walking all over New Orleans exploring Monday. Very little pain with this surgery, and beautiful soft results. No expanders needed and both sides were done in the same surgery. There are very few doctors who do this surgery, and even fewer who do both sides at once. Finding a surgeon you are comfortable with and have confidence in tough, so do as much homework as you can!
Lemon, so sorry you are stuck waiting. Without a doubt, the waiting for next steps has been the most difficult part of this cancer journey for me. Hate it for you!!!!0 -
Not all ILC are grade 1s in fact my ILC has the mitotic count of a grade 3 but overall is a grade 2. I think many here are evidence to this being inaccurate based on chemo they had before surgery. Doctors can make general statements all they want and like you I can say I had two surgeons and 3 oncs from 2 different reputable hospitals say that ILC does respond.... but cancer is an individual thing and all these stats etc etc do not account for host factors which greatly effect things. I dont know about you but Im not a stat. do you know right now I can list close to 100 studies that are looking at various component and factors within the immune system that play a role ....
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Again....we all make the best decisions for ourselves...Check out MD anderson's studies on ILC, ...forgot, you're not a study girl. I try to look at all of the info. I feel many of us trust our docs/studies etc...Can I ask what you are basing your decision for chemo on if you don't listen to your docs or studies? Did you have an Oncotype test done to see if you would respond to chemo?
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ILC is different in each ofus and can vary from one sample to another - i had ki67 scores of 95 percent and 25 percent, path done at 2 different hospitals - i think it was just two different samples.......same with er and pr scores.......
Even us ILCers are all individual in our cancers and body environments0 -
I do agree, Lily! Which is why Oncotype/dr's recommendation, research and following our gut is important. What works for one may not work for another...But, this is why I treasure this forum..sharing info and ideas, so we can make the best decisions for ourselves in the end!
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I did have an Oncotype test done and with a score or 18, and the prospect of treatment for the CLL/SLL down the road, was advised that the benefits of chemo did not outweigh the potential risks.
I had bmx, radiation and am determined to stay the course of tamoxifen & AI and I feel confident that I am doing what I can.0 -
Good for you! We must totally feel comfy with our decisions, otherwise, the decided treatment will have little benefit!
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Joellel.. you have it completely wrong when it comes to me. I am a study girl totally, but given my education and work background I know how to intrepret and identify good verus bad studies, that is what I have been trying to say. While you appear to be well read, no offense I dont think you understand fully how research is done and what defines a good research study. I actually based all my decisions on the solid good research not one or two studies and my individual situation and what was important to me.
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Dear all,
I am searching for a recent article (2-3 months ago?) I remember reading that another ILC member posted about two months ago on another thread that ILC isn't really any slower growing than IDC...it kind of bummed me out, but I wonder if some of you remember it. I can't find it and would like to re-post it in this thread.
Claire
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Joelle, I searched MD Anderson's site and I am not finding the study you reference. Would you please post it, so we can all follow your argument?
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Attack away!!! LOL
“We always have thought that a poor response to chemotherapy always indicated a worse prognosis, but that is not true for every woman with breast cancer because this disease is quite heterogeneous,” Cristofanilli says. “In fact, this study suggests women with invasive lobular carcinoma have a different kind of disease, and that they may benefit from a treatment that is more adequately tailored to the biology of their cancer.
“Before this study, I don’t think anyone realized the disease should be treated differently,” Cristofanilli continues. “Now we need to think about revising our clinical approach and, more importantly, the way we communicate prognosis to women with lobular cancer that have shown poor response to chemotherapy.”
“This is a striking finding, the first to find that in a type of breast cancer,
response to chemotherapy seems to have little to do with long-term treatment
success,” says the study’s lead author, Massimo
Cristofanilli, M.D., associate professor in the Department
of Breast Medical Oncology at M. D. Anderson.0 -
Joelle, no attack, but I don't think the study says what you think it says. The study established the now well-known fact that complete pathological response to neo-adjuvant chemo is rare in ILC.
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I know what the study says. They say ILC does not respond to chemo as well as IDC...and, they suggest hormone therapy may be more effective. If ILC does not show response to chemo before surgery, why would it afterwards? Does it not raise an eyebrow for you? Seriously, I really don't mind who does chemo or not...was only trying to share info. Some things to consider on our journey! My Onc, actually, was the one who quoted the study and did not want me to do chemo.
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Interesting article on another breast cancer site..
ILC Facts
- Accounts for one of 10 invasive breast cancers.
- More difficult to find than IDC.
- Tumors are more likely to be larger than IDC.
- Almost always HER-2 negative.
- Chemotherapy not as effective as other, faster-growing breast cancers.
ILC is often multricentric or found in more than one part of the breast. In about 30 percent of cases, ILC is found in the opposite breast as well. Although ILC was treated aggressively with mastectomy in past years, research data shows that most cases are successfully treated with lumpectomy and radiation, with a rate of recurrence and survival rate that is similar to IDC.
http://www.amoena.com/tbcs/newlydiagnosed/typesofbreastcancer/lobular%20carcinoma.htm
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Has anyone looked into IPT chemo instead?
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Joelle, no, it does not say that. Again, it says that a complete pathological response is rare. The study was done almost 10 years ago, and in the interim it has not been established that chemo should be skipped in lobular. Since I had neo-adjuvant chemo, I do have some experience in this area. I had a complete clinical response, but not a complete pathological one, as expected.
Probably your onc meant that if you had to skip something, better the chemo than the hormone therapy.
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momine, have you been on other threads on this forum for ILC? Many of them are talking about skipping chemo due to recent research....and, why not try IPT?
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