Team ILC Warriors
Comments
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Kar- she didn't say anything about white v red.... Just that she had a big glass of red wine, and not to give it up, because it's good for you. I would think a glass of white wine her and there isn't going to do any harm.
When I was first diagnosed, I remember talking to her and she told me not to believe everything I hear about what causes breast cancer. She said that a couple of years ago, tomatoes were being blamed and how ridiculous that was....0 -
Welcome Gemini! I am so glad to see you here, hope you are well.
My ILC was so small it didnt qualify for oncotest. MO also said risks outweigh the benefits. I understand size of occurance must play a role also.
Two things happened today, its been a hell of a week. After nurse called me with no mets in MRI scan DR called today. This is what he said- Patchy enhancement within the descending nerve root sleeves at S1 and S2 could represent either a benign inflammatory or mailgnant process. So, he now wants to do a lumbar puncture to see what is happening in there. Do I think its mets? No I dont I am Stage 1a, clean nodes and 2 mm tumor. Am I still scared? heck yes I am. I think its more than just frustrated that I am so tired of the poking and prodding. And more than anything being scared and waiting.
My good news is I called the MO RO office back and told them I was having high anxiety about the brca results. I even cried, real tears. Within 10 minutes RO called and said-" You are not specail or high risk, your a normal woman with BC. Relax and have a cocktail tonight!!!!" All genetic testing is NEGATIVE!!
So I take the good with the bad and somehow just cope the best I can. I hadnt bawled in awhile and today I did 3 times, it felt GOOD to get it out. I am going to take the advice of Kestrelgurl and watch a funny movie and keep busy this weekend. Rads sizing on Monday. Not sure when I will do lumbar puncture but I will do it. Did anyone ever hear of such a thing or do you think my back DR is covering his own ass?
I am so happy our ICL thread is so strong, so many beautiful women. I feel like you all are holding me up!
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My BS, MO, and NP all said it's okay to have a glass of wine with dinner! Of course, I forgot to ask red or white. 😊 I'm partial to white. I've just had no desire to drink wine since diagnosis though. Wish I could get over that! I've been kind of in beer mode. They said everything in moderation is okay and as long as you're not having two or more drinks a night. 😃 Cheers!
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Lemon, congrats on the negative BRCA result! Fantastic news! You should have a cocktail and relax. That was sound advice!
I'll be with you on Monday. I'm going for my consult, sim and tattoos, too! Finally, getting this show on the road. I'm tired of waiting.
I wish I knew something about lumbar punctures. We will all be thinking of you. Please let us know how it goes. I'm sure it will all be fine! Positive thoughts and good vibes coming your way!
I hope you are able to relax and have a fun weekend! Sending hugs! 😊0 -
Lemon, I did have a lumbar puncture (myelogram) prior to my spinal fusion surgery and it was a bit nerve wracking. Once they gave me the pre-procedure IV valium though everything was peachy!
I made the mistake of not resting enough after and paid the price with a 3-day spinal tap headache. You don't want one, so do what they tell you!Enjoy that movie!
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Great news on the braca....you must be relieved. Im waiting for my results still. Good luck with the lumber puncture and try not to worry which is hard I know... you will be fine and get through it.
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Great news on the genetic results. Rest easy this weekend!
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Hi all,
Thanks Lemon for starting this thread. I am a little over 18 months since my Bmx. I've been on Tamoxifen since Nov. 2011. It has not been fun but my onc insists I have to take it since there were some stray cells in my nodes & tumor was almost 3cm.
I go up & down in emotions. I'm thankful to be alive but always have that nagging feeling my time here on earth is short. Some days I want to quit my job, leave my husband & just take off & see the world. I've spent most of my life working & taking care of others. I don't regret that but feel like I'd like what time I have left to be more meaningful. If I was much smarter, I would volunteer to try & find a cure for this horrible disease.
I digress, sorry. Anyway, when I was first diagnosed with ILC, the Docs were not very optimistic...thought sure my nodes would be positive as well as distant metastasis. That wasn't the case thank God.
I'm going to continue taking Tamoxifen & switch to AI if I'm ever officially in menopause. I should be at 56 but am not. The SE's are not fun, especially the joint & bone pain which I hear is worse on AI's.
I'm due for my 6-month checkup so am getting a bit nervous but know what will be, will be. My worrying won't change it. I've gained over 10 lbs. which is frustrating but am working on new ways to lose it which hopefully will happen.
I pray the ongoing research will result in ILC being detected sooner & of course that a cure comes along soon so our daughters & granddaughters don't have to go through what we are.
Hugs to all the ILC ladies! Sorry for the long post.0 -
Welcome newfmama- I assume the ups and downs are from the tamoxifen? Do they give you anything to take for the joint and bone pain? Looks like you have done all you can to keep this nasty disease away. I think we all will always be looking over out shoulders for whatever else may be lurking. I am sorry you have to feel this way.
I too hope one day no one has to go through this, Hugs back to you.
Thanks all for the congrats on my brca test! I feel a bit safer and also that my kids may be safer too. whew!
The lumbar test, I am reading up on it. Kestrelgurl did someone have drive you? And I guess my mind is on pain tonight did they give you something for pain or headache?
What a scary roller coaster ride we are all on, at least we have each other to scream on the big hills!
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I did need a driver since they gave me valium.....would not want to do it without, so ask if that is part of the protocol.
I did not get anything for the headache and probably wouldn't have gotten it if i had spent time lying flat on my back like they told me to. In retrospect, a BIG mistake!0 -
Yay and congrats lemon on the negative BRCA! Good thoughts and vibes coming your way as you prepare for the lumbar puncture.
Happy Weekend all!
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Thank you thank you for all the info Gail. Thank you all for so much support.
Amy- felt a huge smile come across my face that we are going togethor yet apart for our rads set up!! Imagine I am right there holding your hand and I will do the same. I am going to have the rest of all the sisters in my pocket by my heart with me.
much love xoxxoxo
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Lemon and Amy,
You'll both be in my prayers through the weekend and as you each go for your radiation prep on Monday. I'll be there with you in spirit and send good karma to both of you.
Julie
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For those of you getting ready for rads...I don't know how you feel about the tattoos. Maybe it doesn't bother you, but, you can refuse them. I did. I only had push back from one tech at the very beginning (she said "they're really no big deal, they're very small, you'll get used to them and eventually stop seeing them" so I said "oh, ok, show me yours, please" and she said "well, I don't have them... I've never had BC" me: "ok, I don't want them, let's move on, I've already discussed this with Dr. b and he said it's not a problem at all". And it wasn't. They put really sticky round stickers on me, and changed them out every Friday. It was not a big deal at all, and all of the techs were great about it. It took about two extra minutes of positioning every Friday, to remark the sticky discs.
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I know that they did tattoo me, but I have never really noticed any marks amongst the freckles and (sigh) age marks on my chest.
The stickies sound great, but the tattoos,at least for me, were a non-issue.0 -
Oh.....and Happy Saturday! I'm planning a bike ride, a bit of menu planning and grocery shopping, then a marathon pizza crust making adventure. Will be making backstock for the freezer.
What fun things are on your agenda? :-)0 -
I was told that a glass of wine with food is fine but on its own its not good especially for ILC which is more sensitive to alcohol in same way as eating sweets, fruit or chocolate on its own is bad as it creates high blood sugars. With a meal its fine and even beneficial if red wine....
I hate dark chocolate and love milk chocolate so finding that hard too but managing better to not buy as I want to be here in 25 years
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Smiling my husband and I had a rule no tattoos or piercing. So we made an exception for this after getting them my biggest fear they will mistake one of my freckles as a tat. They are close to each other and look the same. They assure me they will not make that mistake but since my treatment is at 7:00 am I ask them about their caffeine intake. Glad you have each other to think about. Lemon68 I have shared this with Amy take 2 Tylenol about an hour before it will relax you arms and shoulders while they are over your head for an extended time during the measurements. I had my measurements about 10 days ago and now 4 treatments done
. Hugs to you0 -
Thanks for the input on alcohol guys! I will try to enjoy my glass again without feeling guilty that I am doing harm.
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Good morning gals,
My onc. told me red wine was a b.c. recurrence preventative, so I have an organic glass now and then. I am grateful for the info on eating something with wine, or sugar for that matter. I sat in a colleague's office this past Thursday and ate 3 reese peanut butter mini eggs and 3 mini-twizzlers. Now I feel guilty--I won't do that again!
There's a good discussion thread in the clinical trials and news thread about alcohol, fairly recent. Our ILC seems to be more affected by drinking than IDC, so I'm more careful about intake than I might be had I been dx with IDC, but at the same time, I am a social person and do like to have a glass now and then. I decided that if I make sure it's organic and I don't have more than 2 at a time with food, then I'm not going to beat myself up about it.
Great news Lemon on your negative testing. You must be so relieved!
As for rad prep, it was kind of a bore for me...took a while but not scary or anything; I did get tattooed and didn't mind. They look like freckles and I tell everyone that finally at age 53 I got a tattoo...the first five planets as they look to God...(I got five pinprick tattoos).
Everytime I went in for my zaps I had my attitude on: I would repeat in my head "go GET EM"! for each zap,and worked at turning what could be a negative into a positive. It made it easier.
Hugs,
Claire
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My RO has a rads tattoo on her hand as a sample to show her patients what to expect! Another reason I adore her.
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Lily, I have discovered nut butters. Dark chocolate with a bit of hazelnut or almond butter is really good. I also eat the nut butter on pieces of apple for a snack. The nut butter provides fat and protein to slow down the sugar spike.
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Momine, I eat Almond butter on apple slices too! Yum it's good!
I used to enjoy drinking a glass of wine while I was preparing dinner. Since chemo my body doesn't tolerate wine. Has that happened to anyone else?
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ILC warriors
thought I would check in--what a nice group. I am 4.5 years out from dx-- had a lumpectomy, chemo (intermediate oncotype) and radiation. Was on lupron and femara for 3 .5 years-- now just femara for another 15 months.
It really does fade--I go every 6 months for a mammogram or an MRI and a meeting with onc.... we talk about research,etc. She has always considered me a low risk case... still does. Clearly, no guarantees-but I honestly some days forget that I ever had bc--- it is kind of like childbirth--I know I did it because these kids live here with me, but I don't remember most of it( that could be chemo brain as well!!!)
I think we can and should be vigilant, but I know I feel that I also have to be present in my life-- whether it lasts another year or another 50 (which is what I am hoping for!). As time goes by, it will fade-- life has a tendency to take over again-which is a good thing....
all the best to the warriors!!!
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momand2kids- congrats on 4.5 years! Thats what I Like to hear. Welcome to the board!
Today I went to get sized up and tatted for my rads. Test run this Friday and showtime on Monday. I am ready. Special thanks to AmyinMI, we are walking the walk togethor and talking the talk!
I hope everyone is having a peaceful Monday.
Lily- ((HUGS)) to you.
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I'm curious. Has any one researched what the rate for ILC is about recurrence or new occurence compared to IDC?
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Very good question! I am constantly told I am high risk of recurrence and that truly terrifies me as so often they will not do further surgery for mets or new cancer elsewhere and i am unable to have chemo due to other health conditions (which if I had chemo would kill me faster than the cancer)
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Galsal, as far as I remember, the research is not clear. The latest stuff I saw said that the risk is about the same, but that recurrence patterns and schedules differ.
The more I read studies, the more confused I get, as well as more and more convinced that the studies are not keeping pace with the advances in treatment. They simpley do not have enough years of data for women treated with 3rd gen chemo and AIs, for example, to say with any confidence exactly how well they work 15 and 20 years down the line. It also used to be that 15-year survival was a bit of a pipedream, so there is a lot of data focused on 5-year survival and recurrence rates. As survival improves, that 5-year mark is rapidly becoming less useful.
My conclusion is that there is a huge crapshoot aspect to all this, so I try to take good care of myself in the hope that I can either ward off recurrence until they find some better treatment, or else if I do get more cancer I will at least be in decent enough shape to put up with the treatment.
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Thanks, I agree with being in shape enough to withstand treatment if it's ever needed.
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It is totally a crapshoot. And I agree that the best thing I can do is make good lifestyle choices most of the time and keep myself fit and healthy so I can tackle whatever comes next. But also live well and enjoy each day as it comes.
It's kind of a delicate balance and can be very hard to know where the "line" between vigilance and obsession lies.
On a totally different note, I got another 50cc fill yesterday and I swear it hurts more every time! Thank goodness I only have 25cc's to go as I am not at all certain I could do another 50. Percocet is not touching this pain.
I have to admit that I am feeling rather Dolly-esque. LOL!
Will celebrate my 55th birthday with the final fill next week. :-) WooHoo!0
