Team ILC Warriors

jojo68

I think the symptoms were bloating, pain, constipation...Where did you see the 75% rate of non-recurrence?  I am just curious because it is SO hard to find anything about ILC in general..sooo frustrating!

Anonymous

The patient presented with vomiting, pain and nausea.  Eventually she succumbed to her disease. Pretty grim altogether.  I suppose we'll need to be proactive if we have any chronic (more than two weeks) digestive concerns like the ones here and the ones that Joellee mentioned.

Lily55

Yes but these are such common symptoms - the statistics are on this website www.breastcancer.org - take a look here, you may need to go to the various links

http://www.breastcancer.org/symptoms/understand_bc/fears

lemon68

Today I asked my RO who is a complete dud my chance of a reoccurence, he said without the rads 30%, with rads 5%. Of course he said this is only a stat on the tumor I had returning, it has nothing to do with me getting a new primary in my fried breast. Now I dont get that. I asked how they knew there was no other ILC in there and they said it would be too small to see and the rads would kill it if it were there, SO wouldnt there only be a 5% chance since the entire boob is being done of it showing up there again? I feel like they just dont know. I think we are all just statistics to these doctors and the ILC they just dont know enough about.

Now I need to go see what Joelle posted, I am sure Im going to have something to say!

kestrelgurl

Just checking in as well. What a crazy busy weekend!!

Good news is I survived, am a week closer to my exchange and I had both a bike ride AND a nap today.

Talked to PS office today as my TE is really hurting on the right (rads) side. I was starting to think they had cracked a rib or something. Was reassured that it is muscle spasms and have to admit that a valium has really helped. My problem is that I work at a running store and spend lots of time reaching to pull shoeboxes off of tall shelves......probably not helpful. Nor the pushups I tried to do last week. Sigh....

Will be seeing my favorite RO next week to pick her brain about the possibility of having all the rest of my "lady parts" yanked out. I trust her implicitly and will do as she suggests......even though another surgery is about as appealling as poking myself in the eye with a sharp stick.

On the FUN side......one of my clients will be racing in Hawaii in June and has asked me to go with and support her. Hmmm, free trip to the Big Island right before my exchange? Sign me up! And, client is a PS, so I can pick her brain the whole time. Hehe.

Hope everyone is doing well......I am a bit out of the loop, but will try to catch up.

jojo68

@Lemon...What did you mean by that comment?

lemon68

Local failure in ILC has been reportedly decreased after total mastectomy as compared to breast conservation therapy [22], while others report that breast conservation does not impact local recurrence rates [23]. It is clear that ILC confers a greater risk of late local recurrence [24]. The rate of metastatic involvement of axillary lymph nodes in ILC appears to be similar to IDC [25-27]. This data suggests that primary operative management of ILC can be approached similarly to IDC [28].

This alone scares me, is this saying its better to have the MX for ILC or that operative management is the same as IDC? Seems to say both things here. I do go and read the Stage 4 posts, i know I shouldnt but sometimes something catchs my eye or I want to know I want to learn. I do not recall those women with mets in gastro or peritoneal. I know my MO said ILC likes soft organs more than bones.

Melmcbee- Why do you feel like its going to happen? Looks like you have done everything possible to make sure it doesnt. I only ask because I am not sure if its just fear but I feel something but cant put my finger on it. I like to think its just fear. Anyone else feel it?

Skigirl- Your attitude is great. I agree I too am going to be a pain in the ass and insist on MRIs. I already insisted before RADS they give me a MRI with contrast, they didnt feel it was necessary but to me it was, I won. Its our lives our health, it shouldnt be about money.

lemon68

Gail- I was just looking to see where you were.. Glad you stopped in. Hawaii, what a great treat!!

Joellelee- No ... I only meant I have something to say about everything, nothing negative to you.

jojo68

@Lemon....Phew!!!!!  LOL

Momine

Lemon, the study on GI mets in ILC that was posted only says that these mets are more common in ILC than they are in IDC. As far as most common spots for mets, they are still bone/liver/lung, just as in IDC, as far as I know.

You are right that the part about MX is confusing. What they are saying, as far as I can make out, is that although one study found greater protection with MX, they conclude that on balance, there is no need to treat ILC differently, surgically, than IDC.

I did a BMX, at my insistence. The mastectomy on the right was necessary, because of tumor size and location. The other was my choice. Most doctors consider this surgical overkill, and it is not the recommended approach. Hopefully, there will be more research done on all this, because it seems to be needed.

Lily55

I read it that GI is moré common for us lobular girls.......I had significant inflamación and bleeding before and had colonoscopy which showed descending Colón and rectal inflamación ......since being on my stronger naturopathic regime that has all gone........inflamación pre disposes us to cancer so watch for little changes like that

melmcbee

I dont know Lemon, I guess sometimes I just feel that it will come back. Not sure what I mean sometimes. lol

Anonymous

ILC'ers,

I know we are on another topic right now (mets to the GI tract), but I am scheduled for my second breast MRI day after tomorrow. I pray that they don't see anything.  I'm a little unnerved by the upcoming test, although I was the one that pushed for this from my oncologist...1 year after tx follow up.

I am reading through the recent posts..but they are kind of bumming me out...I think I hear undertones of fatalism in some ("I feel it will come back", "b.c. is what is going to get me in the end", etc.)  Sometimes I think by saying that, a crack in the door opens  

Claire

lemon68

Thanks Momine, I always enjoy reading your knowledge. Sounds like you made the right decision for you, your the only one who should make that decision. My docs were insistant on conservation, I guess I will find out if I should have been stronger on the decision making process. Come Oct. I want a MRI, if they wont do it then I want them gone. Dont want to spend the next 40 yrs begging for a MRI each time. Fear is it will come back and be undetectable until its a high stage with node involvement. Ok, I dont even want to go where I am going in my head!

melmcbee- I understand, pretty sure we all do. ((hugs))

I have 3 more rads!! Stopped to get some itch cream today, its helping alittle. What a mess like a big red raw blob! I forge forward knowing its almost over. Tamoxifen will be given to me on Monday...tick tick tick... not sure yet.

melmcbee

Claire you are exactly right. My mom always hassles me about speaking negative thoughts. My mom believes in the power of "speaking something into existence". I need to go take my anti depressant. lol. Better yet maybe I need to get a new one. Healing hugs to all and thanks for being here.

jojo68

Wanted to post a VERY interesting TED video talking about food healing cancer...They show a graph at the end that is amazing...some foods were more angiogenic than Tamoxifen!  Worth a peek!

http://www.ted.com/talks/william_li.html

kestrelgurl

3 more rads?!?! That is awesome! On to the tamox, which hasn't been that bad....at least for me.



Claire, last week was a rough one, I'll admit. I generally don't think about it....life is much better that way. :-)

Anonymous

Kestrlgurl, no problems for me on tamox. I hope you'll have the same experience.  Glad to see you are optimistic in general.  I struggle iwth it at times but lots of excercise outside helps tremendously. 

For me, on to my yearly MRI tomorrow, hoping that nothing is seen other than my dinky little boobs

antonia1

Joellelee, the TED video was interesting, but I wonder if you have any information about how to combine foods to achieve greater synergy and which foods are specifically beneficial for ILC. Some foods or supplements beneficial for other cancers are really not good for us ER/PR + gals.

Does anybody know a good naturopathic doctor in NYC or vicinity?

Rdrunner

Hope your mri goes well claire!

jojo68

I don't have any other info on the foods...but, on Yahoo groups there are awesome groups that talk about this stuff...cancercured/breastcancerthinktank etc..Also, LOTS of new info on the MTHFR mutations that many of us ER+ ladies carry!  There is also a MTHFR group to learn more!  If you have this mutation, there are certain supplements to help keep recurrances away.

http://mthfr.net/about/

Anonymous

I've seen that TED video too...I make sure that whenever I read anything about certain foods to eat, I check to see if it's something recommended to reduce BC RISK, or if it is a recommendation for those of us who already have been dx. It does make a difference. I still think the Anti-cancer book's recommendations seem to be the most reasonable, but there was good advice in this TED talk too. 

BTW, my naturopath told me to avoid soy generally--even after I asked him about "good" soy vs. "processed". He said we can't get pure organic soy any more because GMO have basically compromised all of it.  He said if I ate a piece of tofu occasionally it wouldn't hurt me, but to avoid it generally--use almond milk instead of soy, etc etc  which I've already been doing. It's fine with me--I wasn't a big soy girl to begin with.

jojo68

Yep, I avoid all soy as well!  So hard to constantly stick to an anti-cancer diet for me, though...Occasionally, I just HAVE to have some Chinese food from my fave eatery!  Life is just way toooo short!

Anonymous

Joellelee, you are right. We sometimes need to have some simple pleasures in our life. !

jojo68

I am just SO excited to find this interesting article/study etc about herbs/supplements and foods that act as COX inhibitors for us and prevent mets... a must see.

Although, I was a little upset to see them say estrogen + cancers have poorer prognosis?

http://www.compassionateacupuncture.com/Cancer%20Preventive%20Properties%20of%20Botanicals%20with%20Emphasis%20on%20Breast%20Cancer.html

FLwarrior

Claire, I drink Almond milk too. I do make sure it is Organic as conventional almond trees are sprayed with insecticides multiple times while the nuts are on the trees.  I like Oat Milk too.

choochoobella

Claireinaz, I'm praying you have a clear MRI on Friday.

Gramwe, How did your surgery go?  Did pathology report back that you now have clean margins?  You have been in my thoughts and prayers.

Melmcbee, I think it is so tough to not have moments of fearing the worst.  I also think it's okay to have those moments.  I feel so much pressure is put on people who have cancer to always think positively.  Sometimes we're told that negative emotions might fuel the spread of cancer.  Personally, I think suppressing those fears could be just as harmful, if not moreso.  I allow myself to have the fears, but try to remind myself that I'm doing everything I can to get well and stay well.  That's the best I can do. 

I also take an anti-depressant, though I needed it long before I was diagnosed with cancer.  I'm cool with that too.  It's part of what gets me through.  My doctor recently added another medication to the anti-depressant I take.  I was having episodes of break-through depression before the breast cancer diagnosis.  The breast cancer just helped make the depression a bit worse.  My biggest issue has actually been developing atrial fibrillation after my mastectomy surgery.  That bothers me more than the breast cancer, probably because it's so unnerving to have my resting heart rate so high and to have episodes of feeling like my heart is pounding through my chest.  Next step:  cardio electrophysiologist, a doctor who works with heart arrhythmias.  It's always something, isn't it? 

I also find some calmness in reassuring myself that "this too shall pass."  I try to spend some time outside each day because I find that restorative.  I'm big into gardening, and as long as there isn't snow on the ground, I'm doing something outside.  For the past 26 years, I've been the volunteer caretaker of an abandoned 8 acre cemetery, and I try to go over there three or four days a week.  As I do chores there, I listen to the flickers, cardinals, and chickadees and the beauty of that natural cemetery gives me peace.  As silly as it might sound, I also stop as I'm doing chores at various graves to read the headstones.  I spend a moment saying a prayer for that person and tell him or her, "I'm thinking of you, and you are not forgotten."  Melmcbee, try to find time every day to do something that brings you peace.  It might be watching a show, reading, listening to a stand-up comedy bit, taking a walk, or a million other things.  It helps put everything in perspective.

Love and peace to all of you,

Julie

 

Momine

Joelle, thanks for the link. It does not say that ER+ has a poor prognosis. It says that in cancers with a COX-2 expression, ER+ fares worse than ER-. 

Other than that, every single reference is to one and the same author, this Donald Yance. I edit academic writing. I assure you that this is not a good sign. 

Momine

Julie, that is not silly at all, and I agree that being outside is good for body and mind. 

AmyfromMI

Julie,



Your story has touched my heart. My Mom (who is just four years out from colon cancer diagnosis with liver mets and is NED) is also a volunteer caretaker for an abandoned cemetery. It is truly amazing the peace and comfort and downright joy it brings to her. My favorite cemetery memory is when I was 16 and my Mom took me to our local cemetery to teach me how to drive a stick shift! 😊



Thinking of you Gramwe and hoping all went well. Please check in!



Claire, I'm praying for a clean MRI!



Kim (Lemon), I'm praying for you as well. Thinking of you daily and hoping you get some relief and heal quickly. I'm so sorry you're in such pain.



I'm going in for #15/30 rads later this morning. I'm on a roll sistas! Hanging in there and taking no prisoners during my daily game of laser tag!



Hugs to all!



Amy