Life sentence
I was diagnosed with ILC in12/11. Stage 2A. Three small tumors in left breast. No node involvemen 0/7, with clear margins. Mastectomy. Post operativeTAC chemo. However no radiation was recommended (five dr. Opinions). Prophylactic right sided mastectomy. Will be scheduling prophylactic ovary removal within next 6 months. On lexapro. Doing everything I can to help myself....vegan diet, no added sugars, lots of green tea,curcumin... Many other supplements plus walking almost every day. Absolutely no alcohol. Still terrified of recurrence. I see articles on women with ILC who years down the road develop abdominal cancers. I'm terrified. I cry almost everyday..sometimes all day. On Xanax to get through. Talking to counselor..not helping. Seems like no matter what I do...it's eventually going to come back. As I said..a life sentence. So devestated.
Comments
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Theresanne - if your counsellor is not helping then I think you need a new one and it sounds like you need one who specialises in breast cancer or PTSD......
I had 50% chance of recurrence and I was stage 3A ILC - this means that 50% of people like me will NOT get a recurrence......but my odds of 50% have been further reduced by hormone treatment, naturopathic regimes, radiotherapy, I dont know what they are now but it does not really matter as I don´t know which group of statistics I will be in, so am just doing my best to stay focused on health. But if you look at the numbers it means HALF of people with my diagnosis will NOT relapse and your odds are better!
I take your fears really seriously though as you are right in one respect, if you carry on with your current level of stress you are stressing your immune system so working against yourself and your regime, and you have yourself on a regime based on fear I imagine, rather than chilling. I admire your dedication but if cancer is your focus every day then you will drive yourself in to a frenzy of anxiety! It would happen to anyone......... have you had a heart to heart discussion with your Oncologist about all this?
It is a life sentence in that you need to live with the shadow of cancer but it is NOT an inevitable recurrence or eventual death sentence....
I was totally freaked by this and still get bad days and odd panic attacks but after getting some decent therapy and refusing anti depressants or valium I feel differently..........it is a crap shoot but it is NOT a guaranteed life sentence, there is no evidence you will inevitably die from ILC or abdominal cancer resulting from it...........
I do feel for you but I am talking tough as you are winding yourself up into a mega state based on imagined fears not reality........please find a different therapist........and maybe a support group?
Take care....

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Theresanne, I'm sorry you're struggling. Lily55 has given you great advice.
May I ask: you don't mention an anti-hormonal. Are you taking one? They can affect our moods strongly.
Also, you had post-surgical (adjuvant) TAC chemo for a Stage 2, no nodes cancer. TAC is the most aggressive chemo regimen out there and I wonder why you were subjected to it.
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Thank youlill55!! I need to hear people like you. Yes, I do take letrozole. My oncologist is pretty aggressive. She initially thought TC chemo x4 , but then said...let's do TAC. I want you do deal with this aggressively and be done! Hmmm...anyway, I did speak to someone at Sloan..that agreed. Drs felt radiation would be overkill. The only reason I went along with this was my cancer was on the left..and since the adriamycin I wanted to protect my heart. Now..I wonder.
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Letrozole can make you feel REALLY depressed.....I stopped taking it as it made me feel horrible physically and emotionally and I could not sleep on it. I am now trying Exemestane instead as it works differently in the body but I was very low in mood after six months or so on letrozole........it is ok to take a holiday from letrozole for a month or two so you could try that and see if your mood lifts, it will take a few weeks before you notice any changes. But do try the other suggestions too......
Good luck
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Theresanne: you are "stuck" on a negative thinking pattern (as I was). I started taking citalopram, an anti depressant and found that negative thoughts come and burst like a bubble. Someday you will realize that LIFE is a life sentence....no one is guaranteed tomorrow. Since my diagnosis, several friends have died of other things, suddenly.......you have to make peace with your own mortality in any way your can, whether that is NOW or LATER. No one is immune to death. Don't let cancer steal any more days from you. After all, if you live to 97 years old and spent all that time worrying rather than living, wouldn't that have been a waste???? It's a waste no matter how long you live. We are all terminal; what happens after is a big question; what happens before should be answering all your passions!!
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Great phrase "Don't let cancer steal any more days from you"
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You are all so kind to respond....and so correct. Intellectually I know this. But I still can't wrap my head around the fact......I...had...a...cancer..in me. Do I still have it? Lurking. Some days are just too much. Trying. Just started working again two days a week. Ok when I'm there...but as soon as I step in my door..reality.
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Yes like every other human alive you will have cancer cells circulating in your body, and as someone who has had cancer once you will have more than someone who never had cancer BUT you know this now so can do things to help your immune system kill the cancer cells (you can see how effective we are at doing this if you go to You Tube and write killing cervical cancer cells.......we have such powerful systems but we have to support them. So your fear has a grain of truth in it but you need to find a way to visualize your power instead of making yourself a victim - the video will really help, please look at it.
H u g to you -
You need to give yourself time as well. Being told you have cancer is earth-altering. Truly, we all took care of ourselves and did all the "right" things and lived as if we would not be the 1 in 100 that would be touched. Here we are. If you read posts of people when they first come here, they pretty much sound like you (even Lily55 did and now she is strong!!).
I had some great gals come and post here when I first arrived in shock and fear. Time makes it easier.
I am surprised you had chemo with no node involvement. Did they do an oncotype DX to see how beneficial chemo may or may not be? Did they give you a grade for your tumor?? At some point, I simply put away my pathology report because no matter how often I read it or tried to comfort myself, it consumed me.
I began meditation and it has truly helped. I've always done yoga and that really helped me heal quickly.
Things I changed were taking less supplements, exercising less and eating less carbs. I guess a lot depends on what you did precancer to make someone want to do something different, thinking that is what caused it. As one of my oncologists pointed out, if you walk into a store and count how many women there are, one of them is going to walk out with a diagnosis. Not all women with breast cancer will die from the disease but EVERYONE will die. When I look at it like that, I try to enjoy the life I have, however long it is.
If Julia Child had been consumed by it, she would have had a long life of no pleasure and waited to die at 94 of something else.
We cannot predict how we will do; we cannot know what cures or scientific developments will come tomorrow or a year from now and we certainly can NOT assume and wait for the beast to come back. Thinking that way gives it power. Don't let it.
Michael J. Fox (he has Parkinson's disease ---very young and aggressive onset) and one of his quotes is something to the effect of : If we worry about something we are forced to live it twice---waiting for it and then dealing with it if it happens. Why not just wait and see.
May you have many, many more years ahead of you. Happy years and no more cancer!
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I think my oncologist wanted aggressive TAC chemo because I had three small tumors...one1cm, the others .5mm,.7mm. They were grade2....enough to warrant chemo. I actually got through it ok. First round was bad but the rest were doable. I was a vegetarian before the cancer however I didn't excercise alot, and did eat sweets from time to time. Had things like sweetened tea...didn't watch sugar. I also had a drink once in a while. Also ate dairy. All of those habits...gone. I've lost 40 lbs because of my strict vegan diet, no dairy, rarely sugar. Plant based diet. Walking almost every day. But the stress is what I think got me. Constant worrier. Have three beautiful children, now young adults...but worried over the dumbest things. I think that destroyed my immune system..couldn't battle those stupid cancer cells anymore. I've worked so hard on these lifestyle changes..but yet here I am...waking up totally terrified every day. I know I should stop reading things....that bring me down. I just don't want to leave my family..my wonderful angel of a husband.
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Thereseanne i dont think we can get through it alone, please find a counsellor or support group, i was in bits when i started posting here regularly.....and i still get panicky but i made the decision to focus on health and living life......and i still need to lose another 22lbs.........it was stress that weakened me before too.
Have you made a list if all you are doing differently now?
Have you watched the video? -
Just diagnosed today with ILC. Very Scared. Any positive stories about survival will be helpful for my psychology. I don't know yet about the hormone receptivity. I am scheduled for body scans this week and a dual mastectomy next week. I don't know how my life is going to change and how I am going to live with this. Any advice will be appreciated.
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smlvr
this is scary, no doubt. But you can get through it.... I am almost 5 years out and consider breast cancer to be in the past... but the beginning is hard-so go easy on yourself. sounds like you have a plan--- and things really do get easier. come back here and we can help you as you go through .......
I had a lumpectomy, chemo and radiation--- none of this is easy, but you can indeed do it if you need to. If you feel like you are really anxious, ask your doc for some ativan to reduce the anxiousness.. it can work wonders at this early stage in the process!
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Welcome Smlvr,
I was in your place 2 1/2 years ago and remember the fear and uncertainty about the future. It is a whirl of doctors appointments and tests but you will emerge from this a different person who is stronger than you think.
Today I feel happier and healthier than I had for many years. I appreciate each and every day and feel confident that breast cancer is behind me. My diagnosis was a complete shock but it does not define me.
Take care of yourself and look ahead to the time that you can say I am finished with treatments and enjoy a new beginning disease free. There will come a time eventually when you don't think if it every minute if the day... In time! I feel as though I was taken apart and put back together. You will heal!
Hugs Robyn
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