Team ILC Warriors
Comments
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Awww, Lemon, I'm so sorry to hear you have to wait until Monday for your results! Please try to do something fun and distracting this weekend. I know this might sound all silly and voodoo-like ... but something in my gut is telling me that it's going to be negative. And my opinion ... and $2 ... will buy you a cup of coffee
Seriously, crossing every finger and toe for you!
I think this is my first post here at this ILC thread, though Lemon was kind enough to PM me about it when she started it. Here's another piece of anecdotal data ... get another $2 out and I'll buy you another cup of free coffee! Anyway, I was having a conversation w/ my RO the other day about how I've gotten the impression that ILC is scarier than DC. Her opinion is that she feels ILC responds particularly well to rads given the single-file nature of it (my description, not hers ... this is basically how I understand it).
My Onco was 16 (or was it 14? -- can't remember, but know it was the highest number in the "low risk" group), so no chemo for me, just lumpectomy + rads, and will definitely go on Tamoxifen.
Hugs to all, and have a great weekend!
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This is the last Im saying on this.. first the study sample was 1034 and second it was retropspective.. do you understand first the very real pitfalls of a retrospective study and second 1, 034 women.. really you want to base your care on a retropspective study on 1,034 women ?
Do you understand what I said about mitotic count. A high mitotic count is just that irregardless of being idc or ilc. Youve mention about other discussing on here.. that does not mean they are sharing accurate information, and that is the biggest issue I have with this site in general, in accurate information be posted by lay people that may change someones treatment decisions or cause severe anxiety about a decision. As someone said re your view and alternative medicine, yes you should keep those to that particular forum, we are all aware it exists and if someone wants to go check things out they can go there and prevents these arguments on forum that are meant for other things.
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Because ILC tumors are often larger by the time they are detected AND the increased change of bilateral disease, mastectomy is often the surgery of choice.
My BS actually told me that he could call my surgery a lumpectomy if it made me feel better, but it would essentially be a mastectomy due to the 3" tumor residing in all four quadrants of my size B- breast.
I guess the point is that we all have to make our own decisions and be comfortable with them based on the information of our individual pathology. My choice may not be your choice and as long as I feel good about it, I won't feel the need to convince anyone else.
My sister is very much into alternative medicine and though I love her dearly I almost blew a gasket when she suggested that if I hadn't gone to the doctor, I might never have had to deal with breast cancer.......it may have just gone away on it's own. Jeeze!
Luckily, for her and our relationship, I am mature enough to choose my battles and knew that there was no good end to that one.
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I will declare my hand here - I am an integrative approach person using both traditional approaches and alternative but I refused chemo for numerous reasons - only time will tell if I was wise and did the right thing but I still feel sure my decision was correct for me and given all the info available to me at that time I would make the same choice again, that is all I can say.
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Actually, many breast cancers DO go away on their own. All of us have cancer cells in our body circulating endlessly. If we are healthy and NOT nutrient deficient and/or iodine deficient etc we usually can kill the cells on our own! When our body is unbalanced, the cancer grows...common sense and many studies to prove, although ridiculous to post anymore studies.
Ok...I am no longer going to post studies on here, because we are just arguing endlessly. Please, do the chemo! But, check into IPT chemo (low dose) first....I will end with this. This is what I believe...Take it for what it is and then I will be moving myself along to the alternative forum...This is what I have found from my years of research.
Why does chemo seem to work for some?
The answer lies in the fact that in many cases of chemo following breast surgery, the cancer itself was a low malignancy...meaning it has a low rate of metastasis. It is the spread of cancer that kills. Many of these women would have survived and done well even without chemo and post-op radiation. There is huge controversy among cancer specialists concerning overdiagnosing breast and prostate cancers. The idea is that most breast cancers are in situ (1 out of 2 of my tumors was) and would never develop into full blown invasive cancers. Also, even in the case of some invasive cancers...the ability to invade and kill varies greatly. Some are highly invasive and fast growing and will kill over a very short period of time, while others are very slow growing (ILC), very slow to metastasize, and can recur decades after they are declared cured. It used to be thought that if patients survived 5 years, they were cured forever. Now, it is evident that there are far too many recurrances at the 10 plus year mark. Studies have also shown that cancer cells are found circulating in the blood of 50% of breast cancer survivors five years after they are supposedly in remission.....sooo, many of these so-called remission cases of women doing well with chemo are still very much at risk. As for the appearance of 'doing well after chemo' recent studies have shown chemo to produce brain damage in a substantial number of people. This can be shown as depression, memory loss commonly known as chemo brain, etc. Chemo greatly damages DNA in all cells of the bodty, especially in the cells that divide the fastest....such as bone marrow cells, gut cells, and liver cells. What most oncs don't want to talk about is that people taking chemo/and or radiation are at a great increased risk for second malignancy (seen many times on this forum after chemo) not related to the first diagnosis. Women who have post-op chemo are at high risk of developing leukemia/lymphoma or even thyroid cancer....and alzheimers. Chemo can make a great number of cancers shrink initially...but, then the cancer becomes resistant to not only that particular chemo but also to all forms of chemo....this is called multi-drug resistance. This makes one die faster because the chemo damages the immune system as well as body resistance to cellular/organ stress! When one suppresses immunity, we speed the growth of cancer...again, common sense...take it or leave it. Chemo causes tumors to shrink immediately and temporarily by killing low grade malignant cells and has no effect on the cells generating the cancer....thecancer stem cells. This is why when cancers regrow, they grow with a vengeance and kill ya! A great number of studies in prestigious journals show that flavonoids, as well as special supplements/herbals can powerfully suppress cancer growth. There is great evidence that a nutritional approach to breast cancer after surgery far exceeds the safety/effectiveness of any chemo/rad regimen.
SOOOO, those are my last words...my belief since everyone keeps hounding me. No more studies to post, sorry if I scared anybody...please do your own open-minded research. I will be moving along to the alternative forum from now on. I will not be answering anymore posts here...I really wish everyone the best of luck, I truly mean that!!!! XXXOOO
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Thank you for sharing your BELIEFS. As I said on a previous thread, you aren't confused at all. You have your treatment plan thought out and determined based on those beliefs.
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Joelle, yes, all kinds of people are trying to find some good reason not to do chemo. Doing chemo is not attractive. However, a small, old study is not a reasonable foundation for skipping chemo and there is no general trend in oncology to skip the chemo for ILC.
What doctors are increasingly doing is using things like the oncotype test, for example, to personalize cancer care better and save some people the ordeal of chemo.
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Rdrunner,
What is your take on the alcohol studies and ILC? What is the relative risk to someone like us? One real size glass of wine per week ok? My onc said yes and I trust her, but I would like to hear from a fellow ILCer.
I'm sure someone here already pointed it out, but that mdanderson study is from 2004. It doesn't say it doesn't work, it just says that it may not work completely. My onc and I discussed this and given the size of my tumor bed, even the slightest shrinkage was a good thing for surgical margins. FYI, there is a bogus email floating around that seems to be from Johns Hopkins. It describes the properties of cancer cells and how to "prevent" it. It is a hoax. I have not seen it here or on the stage III board yet, but it really looks genuine and it's all over Facebook. Here is the link to JH explaining it's not from them. http://www.hopkinsmedicine.org/kimmel_cancer_center/news_events/featured/cancer_update_email_it_is_a_hoax.html
From what I understand on the higher 10 year recurrence rate in ILC has more to do with AI's/Tamoxifen being stopped after 5 years. I think the thought is we take the antihormonals for 5 years and then we have protection for about 5 years after stopping now they are saying for ER/PR positive cancers, that 10 years on the pills MAY be more effective. From the 2012 San Antonio Breast Cancer Symposium and put in layman's terms in the NCI cancer bulletin http://www.cancer.gov/ncicancerbulletin/121112/page2.
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My understanding is that all strongly ER/PR positive cancer is more likely to recur after 10 years as cancer finds a way of growing without the hormones in those 10 years IF it is going to - it was a shock to me that cancer could change its hormone status but its well docuemtned apparently and according to my Onc...this is why creating a hostile growth environment in as many ways as possible matters.....(diet, exercise etc)
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Unfortunately, it's a smart bugger but it seems we are getting closer to better outcomes. My ob/gyn had breast cancer and we were discussing how treatment has changed so much in the past few years that even if you got treated 6 months ago there is new protocol that will be different for patients treated today. If we had to get it, I guess we are in a good time period.
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ILC or IDC the lower the grade the less response to chemo. My onc said the faster the cancer grows ie the higher the grade, the better the response to chemo. So a grade 3 cancer will respond to chemo better than a grade 2 one - this does not say it will not respond at all.
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For those of you that have completed active treatment: what is your doctor doing now? I went for my one year check up, and basically he just felt around my lymph nodes and said see you in three months. No scans, no blood tests, just physical exams every three months for now, and then the visits will be every six months. I don't know how I feel about this when I see so many others being actively tested.
My docs say the tests produce too many false positives and creates anxiety in waiting for results. Well, I'm kind of having my own anxiety over here knowing that no one is checking for anything.0 -
Dianne - I was being monitored evey 6 months but have graduated to annual breast screening. Other than that, they usually do nothing. No blood tests, no bone scans, nothing. He did get me to have a bone density test after 2 years. The reason they don't scan the bones etc is because of the radiation. A node positive patient might warrant different scans, I don't know. I did have a blood test last year because I asked for it - I wanted to know my D3 level, so he ordered a full work up - no problems.
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I was stage 3, nnode positive, I have 6 monthly check ups - blood test, echogram of liver and next time an X-ray of thorax area - hopefully every year it will be an MRI of breast area.......oh and an annual ultra sound for ovaries
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DianneNC,
I just graduated from 3 month checks to 6 month checks. Basic physical exam and blood pressure. I get regular blood tests at the visit for D3 and other stuff (that's the scientific term
). My blood test does not include tumor markers as far as I know. Otherwise, my onc subscribes to the no symptoms, no scans school of thought. I also get a little nervous about not getting scans, but trying not to worry as much. Since I had a BMX and my cancer didn't show up on any scans, I don't get regular mammos or ultrasounds, but my PS is going to follow the implant status via MRI.0 -
I am getting 3-month bloodwork and yearly PET scans, as well as chest x-ray. But much of this is due to the lymphoma, which I want to point out was found at the same time as the BC, so was not an issue of BC treatment. My MO did run tumor markers last time and said all was well. I am scanned a lot, but at least I know the scans are not going to cause lymphoma or luekemia.....too late for that.
Also, I agree 100% with the over-treatment of DCIS and/or LCIS, but in my case, the cancer WAS invasive, needed to be treated and I'm pretty sure it wasn't going anywhere good on it's on. If you're talking about apples, then the conversation is probably not applicable to an orange.
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Kestrel, yes, agree that the over-treatment issue is not quite relevant to stage II-III cancer.
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Hi ladies. Bad planning on my part yesterday. I had to get my non radiated side te filled yesterday and he asked me did I want a double fill and I said sure... Then had an appt with gen surgeon yesterday afternoon to talk about getting my port removed only it was my mistake the appt was to get port removed which is also on my non radiated side. Needless to say my left side hurt all night and today and tomorrow is my return to work day. lol. Guess I will start paying better attention to all my appts. Positive side is that is 1 more thing behind me and really all I have left to do is exchange surgery in 3 months and anastrozole since Im post meno at 43 now. Im excited to go back to work but Im also scared that I wont remember what to do. I still have memory issues. Im also glad to finally have and ILC thread. Its important especially when you are out of treatment and dont fit into any chemo or rad threads anymore. Dumb question.... how does everyone add stuff to your signature line? I see how to put dx and surgeries and such but I dont see how people add sayings. Yes I was blond before chemo lol and now I have a beautiful grey-brown-blondish hair. I have to laugh at myself to keep me going. Hugs to all and thanks for being here. It makes my day to get on here and read.
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Mel, I had memory issues too for what seemed like ages. It got better ever so slowly, and by a year past the last chemo, I finally woke up one day and realized that my brain was back.
I suspect that getting lots of exercise helps, and that it probably can't hurt to force some brain activity as well, soduko, languages, reading.
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Momine does chasing a 3 yr old grandbaby everyday and answering her 50 million "but why?" count as mental stimulation. lol.
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It sure counts as something! :-):
I can't imagine a double fill! I am hurting after 50cc's. But it is one more step along the way. I can't wait to get an exchange date.0 -
Dianne- I had my 3 month check up today. My MO said fir the first two to three years, I will go over 3 months, after that, every six months- forever.
She does a thorough exam around my TE's (they're still in, oy!) And she checks the lymph nodes in my armpits, down my torso, up the back of my neck, and front clavicle area. Today, she also checked groin lymph nodes. She has a chart (outline of a woman's body) that indicates where I have moles. She checks them (I'm fair skinned). She measures my ankles and feels my legs for any swelling. Listens to my heart, lungs, and then we talk and go over my blood work. (blood is taken as soon as I walk in). She does a complete panel and tumor markers, and Vit D. Her nurse does weight, blood pressure and temp before my MO comes into the room.
She's liberal with scans, if needed. I was scanned extensively over the past year for odd reasons, but, thankfully, they've all been good.
She mentioned that she had a big glass of red wine last night. I told her I gave it up for Lent, and she said "don't give up wine! It's good for you!" So, I'm not worried about a glass or two. I gained 5 lbs since my last appt :-(. I'm not overweight at all, but she was firm that I was not to gain weight and she expected it to be back down at my next appt in 3 months. She said "with everything you've done, so aggressively, the best thing you can do now is to stay slim, and exercise every day" I did tell her that they weighed me right after lunch...0 -
I cant wait either I hate these things. Yeah I was pretty stupid he put in 60 cc and asked how I felt and I said great. He knows I hate traveling to Jacksonville so thats why he offered to put 50 more in. Also as a side note my left side was filled before and they removed some for radiation so Im sure I had that much in there before but it still hurts like hell and I will be making more trips instead of double filling again. lol Lesson lerned. Hugs
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Just want to set the record straight on the benefit of hormone treatment and chemo for node positive lobular bc. LifeMath says for a node positive patient (3cm 7nodes) without hormone treatment or chemo you would have a 48% chance of surviving 15 years. With treatment that is improved to 84%. So the benefit far outweighs the risk IMHO.
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I feel your pain! I'm nearing the end of my fills and my pain is going right down into my arm. My MO said today that sometimes it gets so bad, she prescribes percocet. I've been taking Aleve, and my PS has me taking Valium at night because it's a muscle relaxer.
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Suzie- I did everything very aggressively, but, my Drs all said "Tamoxifin is your home run"
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In my case chemo was a no brainer because of the HER2 factor - unfortunately LifeMath doesn't take herceptin in to account in it's calculations. Just wanted to show that node positive bc, no matter what type, really needs to be treated agressively.
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I've been mostly lurking on this site. I do like having a place to see what ILC women are doing. Still, I think that it's important to remember that there are several subcategories of ILC and that they don't all behave the same or respond the same to chemo.
This site is great for sharing information but I hope that ladies currently in the decision phase take the information that they read here back to their physicians to talk about the studies, since their physicians are still the most qualified to interpret the studies!Ultimately, all each of us can do is make the best decision for ourselves that we can with the information that we have at the time. I completed my treatment 2 years ago and I am amazed at how much more is known about BC and BC stem cells now than when I started my treatment. There is so much more to learn but I think that the controlling the microenvironment is likely to play a big role in cancer treatment in the future. That's where eating a diet heavy in fruits and vegetables, exercising, maintaining a healthy BMI all come in to play and will, hopefully, decrease our recurrance risk.
I wish all of you peace with your decisions.
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Did she say anything about about white wine? Wish I liked red, but I'm a real weenie when it comes to alcohol. I like zinfandel. All my friends laugh at me and tell me I need to switch to a grown up wine. I am a very, very occasional drinker, so I guess I never aquired a grown up taste.
Lily, you don't need to be hesitant to say you didn't do chemo. We all make our own choices for our own reasons. The problem I was having with one particular poster (obviously not you) was for those of us that chose chemo, being told that you are crazy to go down that road was insulting.
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