Team ILC Warriors
Comments
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They should have given you an "implant" card with the serial number and information about your expanders. Ask for it Friday. I will grab mine and send you the "model" number! Then you can look online and see what they look like.
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I also called a breast cancer specialist for second opinion. I had isolated cells in my sentinal node. I paniced but she said "oh honey that is not bad." My family dr. said they actually consider this node neg. BC specialist also said :"I know you will worry for years but this type of cancer does not come back. I had 3 chemos prior to surgery some was dead. My turmor was multifocal and about 7.8 cm. They also said would never had gotten it all with lumpectomy. My other breast was negative.
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My good one was negative too, but pre cancer IMO. Unfortunately this can and does come back.
My TEs are NATRELLE style 133SX. 500cc. If you go to a thread called
BREAST IMPLANT SIZING 101. They have a bunch of links and a ton of information. You might consider sending Whippetmom a message and she might be able to give you some info before your appt Friday.0 -
If anything they will be taking fluid out. He will not fill till after rads. Is that your plan also? Ya I know it can come back but we can hope and pray. And now we know to get checked further and not let it go as nothing.
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Nope it's not allowed back! Surgeons got it all out of there.
I have had complete fills to side for rads because it is easier to stretch skin and muscle that has not been cooked. Pardon the expression, but it is what it is.
You need to start with finding out what kind of TE you have. You might want to consider a second opinion. You still have time before rads to worry about all that.
Kick chemo's butt first!0 -
I have read that many times and will question him Fri. Also my oncologist can get on rads dr. and find out for sure. But some do not fill first. would like too fill and get that part over.
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Claireinaz,
You have been such an encourager and supporter to so many women on this thread. I can't tell you not to be scared because I know just how you feel. I will be praying for you and that your appointment goes well and that you are able to find your joy again quickly. (((Hugs)))
Julie0 -
claireinaz - I'm sorry, I can't remember if you post on any of the Arimidex threads. If so, the total wiping out of estrogen can definitely cause mood issues. I have a sucky day every now and then, but have had no extended periods of depression. In any event, please consider asking for an antidepressant even if you only need it for a short period.
I've been doing really well, but every once in a while something just hits me the wrong way. Today I got a letter from the breast imaging center reminding me to schedule my mammogram (I had bilateral MX in 2011). I've had ultrasounds and MRIs since BMX for lumps so they know my history. I kind of laughed it off at first, but then everything sort of sunk in once again and the tears started to flow. I think we plow through, but it's always just under the surface. We deal with surgeries, reconstruction, oncology, radiation, chemo, etc. and then try to find our new normal. I had friends say after my last reconstruction surgery, "Oh good, you're all finished", but I'm still dealing with side effects of drug therapy and I'm not "finished". We are forever changed and it's difficult to just slip back into our old lives. You are not alone!
I've been really good about daily exercise, even if it's just a 30-minute walk. If I'm having a particularly antsy day I usually realize that I haven't take my walk. For me, it really helps with the drug side effects such as pain and it also evens out my mood.
Please keep in touch here and ask your MO or PCP for help if you need it.
Take care
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Claire, I wonder if part of what is contributing to how uneasy you're feeling is perhaps a sense of letdown after having completed all treatments? Knowing that a prophy BMX was on the horizon might have given you something to focus on earlier this year ... Now that it is over, do you have a sense that things are no longer in your control?
I ask because I have experienced feelings of being untethered and on my own ever since I finished rads six months ago. I'm actually looking forward to my first mammogram since Dx (it's scheduled for 11/1) -- crazy as that sounds. Of course I only want good news.
I wish you all the best with your upcoming appointment (tomorrow?).0 -
Dear ladies, your posts made me tear up. Talk about mood swings and emotional...
I do feel like the further away I get from tx the more unprotected I am. I tend to blow through physical recovery because I'm in such good shape and get my fair share of activity (running, hiking, bikram yoga, weights, walking, etc) something every day. But I'm wondering if I've not processed the emotional aspects of recovery yet, or if prepping for the bmx for such a long while kept me busy and now it's truly over..but it's never truly over iwth the little c, right?
I think the two year anniversary coming up (dx day) also has something to do with this. I knew that last year at this time the rads and chemo were probably still systemically working in me...and I felt good about that. Now it's just the tamoxifen, my diet, exercise and luck of the draw...if that makes sense. And the light, the leaves changing, the smells, etc all remind me how scared I was two years ago before i found out for sure it was ILC.
I freaking HATE little c....ARRGGHHHHHH!!!!!!
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Claire, all of this sucks. I have had about a zillion scans. Since diagnosis and no mets so far. However I have now had a ton of radiation because of this pain or that pain. Dont feel unprotected because you arent. The best fight against our type of hormkne positive cancer is tamoxifan or the AI's. The chemo did its job which was to take care of any nasties that had travelled. Radiation did its job to take care of any nasties at the specific area that surgery didnt get. Im in the same boat. I have finished all active treatment and surgeries anx I now take arimidex. Its the time that we slow down and realize what we have been through. We didnt get a chance to be angry or mourn because we had to concentrate on treatment and what the next important thinv we had to do. Take the time to mourn or get angry but know that you hve done everything right. You are a winner. Healing hugs.
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Claire, I really like your signature quote, from michael j fox. It has inspired me and he is right, you know. It either will come back or it wont, logically we all know that worrying doesnt help...Once youre doing everything you can on your end (and it sounds like you are) I believe you can let go. it's hard not to get crazed on anniversaries or at scans but faith in whatever higher being you believ in, or in fate, really helps. I liken it to flying in a plane (which is terrifying to me, though I do fly.) You choose a good airline, buckle up and then leave the rest up to the pilots. Plane will either crash or it wont, most likely, it wont. Carrying the philosophy to BC helps me, but it's very hard at the beginning. Each clear scan, with each passing year is no guarantee, I know, but it helps one learn how to live without thinking of BC as much. Can't explain really, (and I am a lunatic before scans, think it is PTSD just being near an MRI or a mammogram...) but knowing that results are not in your control is somewhat calming. Results can just as easily be good, too
Will be thinking of you,
Shari0 -
Ha! Love you ladies sgreenarch and mcelbee. I might add that I'm waiting on a followup from an abnormal pap I had last month, too, and my bro. in law was just dx with late stage cancer. I feel metaphorically like I'm swimming in abberant cells.
My hair person told me that when he's anxious and all caught up in his head about something that might never happen but he's worried about it anyway, he tells himself that he's not going to tell that story today. He tells himself another story.
I"m off to mass then to my visit. Love you ladies. Thank you.
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There is a thread called, "Why was I stronger DURING treatment than I am now?" I have found it helpful and you may, too. I have been struggling, too. I am still going through reconstruction. I want to be done already! I'm getting close to two years since DX. Of course, I have LE in both arms so I will have that constant reminder forever........
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Dear warriors,
Okay...my oncologist gave me the green light for another 3 months. She said I look great! and although my white count was a tiny bit low (no surprise, I've been stressed out, switched back to vegan which can cause white count to be a bit lower, and my white count seems to be at this lower place normally anyway), everythiing else was really good. I had been worried about hip pain and she confirmed that if it is persistent and gets worse, it's to be looked at...mine, since it's intermittent, hardly noticeable most times and seems to come when I walk on it depending on what shoes I wear, she said not to worry at all.
My husband got teary-eyed when she gave me a hug and sent us on our way. I went in the bathroom and sobbed for about 1". Then we went for a run with the dog in the red rocks of Sedona and came home.
She's putting me on arimidex and taking me off tamoxifen since I'm officially in menopause and she says that arimidex is more effective. She said 40% of women have aches and pains and stiffness from it, but that 60% of women have no problems. Heat, stretching and glucosamine all work well, she said. I asked her if bikram yoga was her rx and she said yes, because she knows I'm a fanatic about it anyway and haave been for 6 years. I'm not excited to swap meds, but if it keeps me alive I'll do anything.
She also said that losing weight is harder b/c of meno and not to blame it on tamoxifen. Darn.
Thank you all. I can't express how relieved I am right now. I'm exhausted post-visit.
XXOO
Claire
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Awesome news Claire! Take the dog and go howl at the moon :0)
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Happy for you, Claire!
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Good to hear that, Claire.
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ILC ninjas,
Now...how many of you are on arimidex and can you tell me your experiences? I'm trying to be hopeful, but darn it I don't want to gain weight on this drug, or feel like i'm 85 because of stiffness and joint pain....and wonder how you are faring on it.
My onc. said it's a cruelty of life that we have to eat less and exercise more just to maintain weight. She's right, I think. But what do you think about arimidex? She quoted me a study that used placebos for some women post meno and others took arimidex and the weight gain was the same...or no weight gain.
Just need a bit of advice. Two years anniversary of "so far so good" tomorrow, so I'm going out and doing something profound for myself physically that I've never done before. It's beautiful here in the Northland and I'm looking forward to it.
Ladies: you rock. I read a quote from FB friend that said "God supposedly gives us only what we can handle. God must think I'm a badass."
C
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I had scans last week which were all clean so I am scheduled for double mastecomy this Tues. I am very frightened as I do not yet know all the details of my ILC, ie if it is hormone receptive and the like. Will the doctor give me this information post op? Also, I am scared about lymph node involvement and its effect on my prognosis. It seems there are so many unknowns at this stage, and as a person who needs to know what I am dealing with I have a great deal of anxiety. It is heartening to know from this forum that you ladies are survivors and I know that part of getting well is being positive, but I am so scared right now that I need xanax to sleep through the night. I am afraid of how I am going to feel without breasts; especially as it pertains to my husband who is more attached to them than me. It is going to be really hard on him and I don't know how I am going to deal with that. I have so much ahead of me and I know I should take one step at a time but this is so overwhelming. I need to hear some positive stories.
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smrlvr, I'm so sorry you are so worried. I remember feeling the same way exactly two years ago. First of all xanax is a wonder drug and I still take it occasionally since bc changes our lives in ways we can't control. Use it as you need, just don't over-use.
Secondly, I think that your surgery's pathology should give info about hormone status. ILC seems to be highly ER positive, which means it can be treated oftentimes successfully with anti-hormonals like tamoxifen and arimidex. That's a good thing. I hope yours is hormone positive.
Are you getting reconstruction with your mastecomy? I just had mine done in July and I"m quite happy with the results. Their sensitivity is mostly gone, but I don't have to go without breasts, and my plastic surgeon says that he will inject some fat in places to even things out and that oftentimes brings back sensitivity.
I had 6 out of 11 nodes positive. I don't think about them much since my bc was slow growing, my scans were and are clear, and I'm taking my anti-hormonals after doing chemo and rads and surgery. My two year anniversary is tomorrow of dx. You'll soon be where I am. I promise. My advice? Be fierce. Do everything you're offered to kick cancer's *ss, as it can make you feel more empowered than helpless (but I know that's where you are right now and that's okay. Once you get more info you'll start to feel a lot more hopeful. I am hopeful for you!)
XXOO
Claire
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Claire:
Thank you so much for your reply. I will keep reading it over and over in the next weeks to help me keep the faith that I will get past this.0 -
claire - I have been on Arimidex for 2.5 years and have actually lost weight so I don't think weight gain is a given. I attribute it to being more vigilant about daily exercise. I have dealt with bone and joint pain on Arimidex and that seems worse if I don't get out and exercise every day. I also experienced headaches and some real mood swings starting at about 3-4 months, but that leveled off fairly quickly.
For me, bone issues have been the most difficult to deal with. I was instructed to take Ibuprofen, which was really helping until my blood pressure readings shot up and I had to switch to Tylenol (which doesn't work nearly as well for me). I was on blood pressure med for a few months until that normalized. I just started Fosamax as I went from osteopenia to osteoporosis. Hips look fine on DEXA, but spine does not. I'm taking calcium and Vit D in addition to the Fosamax. The bone pain seems to ease up at times, but obviously is something I'll be dealing with until I finish Arimidex.
It hasn't been fun, but it has been doable. There are several Arimidex threads here, but please remember that there are many women who do just fine so don't assume the worst.
Happy "so far so good" anniversary!
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smrlvr - It's perfectly normal to be frightened and overwhelmed right now. You are likely to read over and over on these threads that things get easier once you have all the details of your cancer and you come to some decisions with your docs about your treatment plan. That absolutely was true for me. Everything feels so out of your control, you feel like your body has betrayed you, and you have to crash-course into a world you may know very little about. I think anyone reading your post can remember feeling exactly as you do now.
You likely will get more information right after your surgery, but the final and official pathology report usually takes at least a few days and your breast surgeon likely will call you as soon as that's available. Your breast surgeon might give a prediction of what treatment plan might be suggested, but you have to wait until you see the oncologist to decide on the details. There can be a wait after surgery before you have your first appointment with the oncologist. They typically want to give you a chance to heal up and some oncologists use additional tumor testing like Oncotype DX or Adjuvent to help make decisions about chemotherapy and those tests can take a few weeks to complete. And as Claire wrote, many tumors are responsive to hormone therapy. It might be recommended for you to do both chemo and hormone therapy or just chemo or just hormone therapy. The good news is that the oncology part of cancer treatment has become quite sophisticated so treatments can really be tailored to each individual.
Claire asked about reconstruction. I'm also curious if you are a candidate for nipple-sparing surgery. Everyone is different, some are perfectly fine without reconstruction and others wouldn't consider not having it. I had nipple-sparing bilateral surgery with tissue expanders placed immediately following (and implants placed six months later). My plastic surgeon put a fair amount of saline in the expanders so when I saw myself for the first time I actually was quite amazed to see a slightly beaten up version of myself, not at all what I had prepared myself for. The numbness took some getting used to, but it didn't take long. It hasn't been all smooth sailing, but I've done really well and my reconstruction turned out wonderfully. My husband has been great and is fine with it all.
Reading your post made me think back to when I was at where you are now. Every day I would say to my husband, "I don't want to do this" and he would respond, "But you have to". It became our little daily ritual. Know that it will be a roller coaster ride, that there will be ups and downs, good days and bad days. The best you can do is take it one day, one step, one bite at a time. You will find that you are much stronger than you think. Ask for help when you need it. Give yourself, your husband, and your loved ones permission to be sad and angry and upset then try to keep plowing through. You'll get there!
Smooth sailing on Tuesday!!!
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Smrlvr, good luck Tuesday. You will have to wait for a few days for the final pathology to come back. You can click on our names and read our stories. All of our stories are positive because we are still alive. Yay. This is a process that cant be rushed. Try to rest when you can. We will be here cheering you on.
Claire, I have been on Arimidex since March. I hav headaches all the time but I did before cancer as well. I havent gained any weight or had joint problems. I do not diet or exercise.
I am so glad your oncologist took away your fear. I am so happy you are doing great.0 -
Smlvr, hang in. We are here with you. Will get easier as you have more info and a plan. Lean on us as you need to.
Claire, your onc may have had a reason to start you on arimidex. At my last onc appt my onc suggested Femara as the AI I was to switch to as its been shown to work well against ILC specifically. not second guessing, but of course I googled the article and here it is if you want.
http://www.medpagetoday.com/MeetingCoverage/SABCS/36305
I'm slugging it out, determined to stay on this drug. I don't complain about SEs as anything beats BC. Mostly stiffness, joint aches, higher cholesterol and fatigue. I exercise and try to eat well. Try to make work a bit less crazy as I am just unable to manage as much, but slowing down makes me surprisingly happier anyway.
With love, shari0 -
Claire! Wonderful!
enjoy your physical challenge! Celebrate!
I wish I could help answer everyone else's questions too, but like all of you I look to our fellow sister experts who know first hand.
Hugs to all of you who have found this thred and to all of you who continue to come to this thread to help us!0 -
Ladies, how nice to have a morning cup of coffee with you while I read your posts.
Shari, yes...thanks. I know why she switched me--in fact I asked her about it and if it was time to make the switch since I had officially been in meno now for a year--and she seemed to need the reminder
I'm just a little weary of my body being the ongoing experiment. Some of the other posts are encouraging about arimidex and I feel better--less worried although I was always committed to taking it when it was time-- so off I go down the anastrole road. She told me that glucosamine works really well for joint pain and she recommends it.
Smlvr, TinaT gave you some really good info. We are all here and enjoying life (even if we whine a bit about things). You will be too. Let us know what your plan is when you find out the status of your pathology.
Claire
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Hi Ladies,
I'm so frustrated today. I need some words of encouragement. It seems that the pathologist made a full mess with my report. I gave my parafinn blocks to be checked again. In the other lab the results are absolutely different: The tumor cells are IDC instead of ILC and more - Maybe I'm HER +++!!!!!!!! In the other lab they say I'm still 80%-100% ER+ and PR+ but I don't know if this is good or bad. I'm so tired, angry and discouraged. I just finished the chemo. I'm starting radiotherapy this month. Now I'm waiting for the final results and will see what's next. I think it will be Herceptin...but. I want to scream!
My TM are still high - 50 and this make me feel more terrified.I think I'm not supposed to post on this board anymore but the only people that I know here are you. Thanks for reading me.
Christina
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Of course you can post here kiss77......what a stressful mess, ER and PR + gives more treatment options like anti hormonals so its positive in a way. It may be you have both ILC and IDC ....
50 is not that high for TM, honestly.........and these tests are not that reliable....mine were normal with stage three cancer
Good luck0
