2013 Sister Warriors
Comments
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Kimberly- (by the way that is my real name too)
This young man that you loved as a son needs to have more respect for you and your family. I wonder if he is just scared and doesnt know how to express this to you and is acting like an ass. Is he your daughters boyfriend? I know my sons girlfriend lives part time with us, we love her as our own. I know you shouldnt need to give him some time but maybe if you find yourself alone with him try to talk to him, let him know how you are feeling even if you break down and I am betting he will give you a strong shoulder. He may be a little immature or selfish but I bet as you treat him as a son in his heart he loves you dearly. I am sorry, I know this is making you angry but it also hurts. Let us know how it goes with him.
As for your hair, I still love it.. a few streaks would look great! I am going to JCpenneys of all places for a dye job, they are offering 4 free foils with the dye job. I am going to do something wild. It will enpower us and make us hold our heads high!
xo
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Lemon~Where are you in Ohio? I'm in Reynoldsburg Ohio, a suburb east of Columbus.
I'm getting treated at the Stephanie Spielman Comprehensive Breast Center. Awesome place!
Blessings
Paula0 -
Thanks Lemon68! I needed to hear that about the staging and grade. I talked to my family Doctor and she is going to look into finding me another Doctor that she thinks I will feel more comfortable with. I am going to go ahead and get the tests done that she ordered but not meet with the RD tomorrow. Treatment was not going to start for a few more weeks anyway.
On a sad note, My mom who had BC 30 years ago found another lump and is going in for a biopsy this week. So let's keep her in our prayers too.
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Soteria- I am up here on the lake east of Cleveland. I will be going to the Siedman Cancer Center in Mentor. I remember Stephanie Spielman so sad, that poor family. I am happy to hear what a great facility it is.
Momtotenkids- Your going to be okay, you will find the right match that works for you..hope I do too. I am so sorry to hear of your mom, I will be praying for her. She shouldnt have to do this again, its not fair. Please keep us informed.
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Hello everyone - I am brand new here on the forums. I was diagnosed on January 17. Will never forget that date. We all are brave women. I don't know how the heck I am going to get through this but I know I can't do it alone. I will be reading more posts and following along with all of you as we go through what is in our future. I don't even know if this is coherent. i hope so.
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Welcome Addie. This is a great group for support. I have learned alot from this group. I have a hard time looking up info because I am afraid to know the answers. Some of the women on here have reasearched so much and are a great source of information. I was able to write down a lot of my questions for my OD just from reading the posts. Take advantage of the information and ask questions. We are all here to help each other.
My Family Doctor called back this AM. She is sending me to another oncologist that specializes in BC. I am going to call my surgeon today and let her know too. I am still going to finish up the testing with the first Doctor so when I see the second one I will have results and be ready for treatment.
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Hi Addie - welcome! This is a great site with lots of good information, and support when you need it! I was diagnosed on 1/18. Scheduled for a BMX w/TE on 2/13.
Well ladies, I just got a call from my endocrinologist (scheduled for two biopsies 2/11). He said my calcium level is high and was going to request the lab run one more test on my blood. From what I understand the two things he is concerned with is an issue with my parathyroid or cancer. More than likely it is the former. He wanted to know when my BMX was so that he could get this all wrapped upand talk to my BS (compare notes, I guess) before my surgery. At least HE seems concerned. Nice man, I like him. Ironically, one of the symptoms having too much calcium is nausea....I have been sick to my stomach since around Thanksgiving (before my MRI and my cancer trip) and no one could figure out why, until now. So, if it my parathyroid, I guess I will tackle that surgery when this other one is all done. Has anyone else had this problem?
Also, I know a lot of people are strong ER+, anyone else here weak ER+? From my path, I am only 5% for the ER+, yet 95% for PR+. I was reading in a medical journal that they are actually questioning the validity of even testing for the PR since is does not seem to make a difference in hormone therapy. Has anyone else heard that? The breast navigator person (sounds like a GPS for my boobs LOL) said the oncologist MAY do hormone therapy since I am little positive, but is not sure.
Last question, they think, according to the MRI, that my tumor is about 1cm, however, I have two areas of dimpling and creasing. The one area you can see even with my arms down. The dimpling was there pre-biopsy. Would something that small really cause that much damage? Or, could it be larger than what they think? There is so much crap in there (cysts, fibroadenomas, dense tissue, etc) it is amazing they could find anything. Anyone else have dimpling?
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Hi All -
Surgery went well and I'm resting comfortably at home. New2BC, I should clarify. I wnet in for my annual mammo and found the lump. My surgeon had me do a bilateral MRI with contrast to ensure there wasnt anything else in my chest other than the tumor/lymph node they saw on the ultrasound. It came back clear. Meaning no other tumors. My Med Oncologist will have me do a precautionary pet scan before I start the chemo.
I have to say I told my friends and co-workers via email. If interested, I can post what I wrote. It was much less stressful than going to people individually. The outpouring of love and support has been amazing and I feel very blessed. I' m quickly learning you take this one day at a time...
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momoffive I had dimpling but didn't notice it until after I was diagnosed. Mine was 1.6 cm. They thought it was 0.9cm before surgery. That was the other shocker for me yesterday, the size.
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Hi Momtotenkids - My fantastic Ob/Gyn recommended the breast surgeon to me and I then read up the surgeon. Dr. Brooks gave me a list of who their office recommends for Med Oncologists, radiation, and breast reconstruction. When I was checking in to do the pre-op tests the receptionist said "you've joined my club!" She said I could ask her anything while I was going through this "bump in the road". I showed her the list of names and she said I have to go see this one particular Med Oncologist as she went to several and then found Dr. Ashouri. He was as compassionate as she said, and his office staff also took stress away. I showed the names to a couple of co-workers (one is also a 10 yr breast cancer survivor) and all chose the same two doctors! So it made my choice easier for med oncologist and radiologist.
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Hi PositiveThinking - Glad to hear that you are home and resting!! Smart telling friends and co-workers via email...telling folks is a bummer. Some don't know what to say, or ask stupid things, like "what side" smh.
Momtotenkids - It "feels" larger than a cm in the area of concern...so I will be very curious as to the size.
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Addie--welcome! And if you haven't checked out the resources on this website, I would encourage you to do so. They are very well written and presented, and accurate. I know it's a lot to absorb. You learn a little more each day. I view it as my education/class time, and I've got to put in so many hours to understand what the heck is going on. And it's a process. You learn about what you're immediately facing; once you do that, you move on to the next step. So, not knowing what you know, I'd suggest starting with the understanding your diagnosis and pathology pieces. As you hang around this site, and read discussions, you'll be able to put comments into better context.
OK--I need to vent. I have one staff person who heard from another staff person (incorrectly) of my surgery date (she thought it's Feb. 18; it's Feb. 25), and sent me an email about what all this meant for her (work wise). She's actually terrific, but can be a little too anal about schedules. We have a regular staff meeting tomorrow--couldn't she at least waited until then to see if I would talk about this then? And, given the circumstances, who cares about those details. I mean really, in the bigger picture, it's just not that important. Geez.
And, I have another staff person insistent on coming to visit me. Very sweet gesture, but I'm not interested in having visitors from work. Or visitors of any kind! I just want time to heal after surgery. I've tried to discourage this notion, but she's not getting it. Guess I'm going to have to be blunt. Which then I'll hurt her feelings. Geez, again.
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PositiveThinking--I'm glad the surgery went well!
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@Positivethinking~I would love to see the email that you wrote. I was up early this morning drafting an email to send to my friends that I haven't spoken to yet, but I'm terrible at putting my thoughts down on paper. Thanks!
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Speedy4, here's what I sent out (a bit more personal to friends; this one was also to parents of my kids' friends), maybe you'll find something in there that is helpful. I believe in lots of people knowing so they are sending healing thoughts my way:
I have some news I wanted to share with friends, and the parents of children that are friends with my kids: I've got breast cancer. Luckily (?) I have the most common form (IDC), it is highly treatable, and it is thought to have been caught early.
I am doing great. I welcome surgery, set for Feb. 25, and whatever treatment is deemed necessary (TBD post-surgery) to get the cancer out of my body and reduce my chances as much as possible for a recurrence. I know I am facing some pain and my life has changed (short term with whatever I got to do treatment-wise; long term with monitoring), but it's not the end of the world. Well, I don't intend it to be, for me. I have too much living to do, and if that means dealing with this, so be it.
Right now, Bailey, Donovan and Aidan are doing fine. Their world hasn't really changed much (other than I have been spending an inordinate amount of time online reading about this disease), but things will change with surgery, treatment--so if you see some behavioral issues, please let us know. And, if you can offer them a distraction, help keep their lives as normal as possible, that would be very welcome.
I ask for everyone's prayers and positive thoughts. We've received an outpouring of offers to help from those that have heard the news; we are fortunate and grateful. I have some friends taking the lead to organize offers, so if you'd like to make a meal, help with getting kids to their activities, and help Spencer with some of the chores I won't be able to do during recuperation, and who knows what else we'll need (we've never been through something like this!), join this online site that has been set up:
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Hello my warrior sisters- I saw my MO today to review my oncotype test results. I came back with a risk score of 28. That's still in the intermediate range, but high intermediate since the high risk category starts at a score of 31. I have an approximate chance of 19% of recurrence in 10 years even with hormone therapy. She strongly recommends that I do chemo and I agree. My decision is based on the facts (other than the stats) that I am still young (53) and healthy (other than BC). I want to do everything I can to tackle this now rather that have a possible recurrence in the next 10 years and kick myself because I didn't do the chemo to lower the risk 10 years earlier.
My chemo will be 4 cycles of TC, 3 weeks apart. Then Rad tx, then hormone therapy. The biggest bummer for me is losing my hair- but I will pick out a suitable warrior sister wig (I won't look good in a turban
). Here's a funny fact that made me LOL. The wig will be ordered as a "cranial prosthesis" as some insurances won't cover wigs. What a scream! I loved your haircut Kimberly1965 and I may bob mine too before I lose my hair. My first treatment will be this Friday. No messing around for me- I'm ready to kill some cancer cells!I feel at peace with my decision, and feel much better that I know now what the plan is. I agree with all my sisters here that the waiting and the unknown is the really hard part. I've got my pink boxing gloves on and am ready to "fight like a girl"!
I wish all my other sisters either recovering from surgery or waiting for results a calm and peaceful night. It's truly a beautiful thing to see how all of you are supporting each other in this forum despite our own personal challenges. Rock on, Warrior Sisters!
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Positivethinking- I am glad to hear things went well and you are home resting, good news!
Sounds like alot of decisions are being made in our group, always feels better to have a plan in place. Congrats to those of you that have made your choices, I know how hard it is.
I saw my BS 2 days early today! I had to have a seroma (balloon of fluid) under my arm from SNB drained, ahhh it feels so much better. If you have a SNB keep a watch out for this, no one told me so I didnt know if it was swelling or what. Pain was horrible and with the draining I got great relief. Almost 2 weeks and still have barely any feeling in armpit, upper arm so I didnt really feel the needle.
My nodes are negative but I do have Isolated Tumor Cells in or near one of them. BS says still negative and this is not something to cause concern. My final stage is STAGE 1A so I got what I had hoped for. I again today asked about a MX and he promptly again told me there was no medical reason to do it. I am ILC which is sneaky, bad news but he feels strongly in breast conservation. I just wonder if I am making the right choice.. I do trust him but so many including in this group are choosing MX. He explained even with MX, BC still happens, asked for survival rates and he said they are the same either way. Keep looking for that magic bullet to tell me the way.. I know for now I am blessed with low stage and I just need to take one day at a time. I should see the med onco and rads onco soon. BS wants radiation to start ASAP, whole breast and most likely axillary also on right. So far no mention of chemo, he thinks my tumor of 2 mm was too small to do the oncotest which I really wanted. He told me to discuss MX concerns with the other 2 docs I will see to get their opinions also, will do so. I am fighting just not sure of the size of the gloves yet.
Wish you all peace, love and a calm enjoyable night. xo
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Hi Addie- welcome. Amazing group of sister warriors.
Excited tomorrow I meet with MO and finally get the confirmed path report with my staging and tx plan. I hope that the oncotype score is complete. I want to jump on this...so up for whatever it takes. My BS assured me today that my path report confirms lump was right choice & rads will address anything lurking behind. We had a heated discussion & consult on bmx so no more looking back just marching forward in attack & conquer mode.
Once the adhesive strips come off I'm goopin up my skin for rads.
ReneeinOH- glad you have your plan in place & support system in place yeah!
Positive thinking- home recovering crossed over
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TMM-gotta get me some pink boxing gloves but going to fight dirty!
Lemon68- my BS say 2 wks til fight time. Each cancer is different. I wanted bmx, but 3 diff consults said lump. I'm here in CA at top notch cancer center I trust their expertise that's why I'm here...they all said BC recurrence can happen even with mx & outcomes are the same. And have talked with women in their offices that have different procedures all based on path.
Breathe- ring ring time to take a 2 minute break renew refresh before the next round. I'm going to be a great prize fighter! Pow pow be very afraid c going get you so out oh here!
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lemon68,
I did my double mastectomy with SNB (left) 3 weeks ago. They removed my drains after 10 days post surgery. This week I feel more sensations around my chest and it feels like there are 2 tight ropes pulling my chest and my underarm. I only took pain medications once after the surgery. The first week my chest was numb. Now I am wondering if there needs to be some draining done by the plastic surgeon to make me feel more comfortable. When I look at the cuts, they do not look puffy. Was yours puffy in one area or all over? I just want to see if I need to see my doctor again for draining . Do you take pain medication now?
My oncologist also told me that I was not a good candidate for oncotype testing. My biggest tumor was 8 mm. But the sisters in this forum are saying that I should ask for one. I do not know if oncotype testing has anything to do with the size of tumor. If anyone knows, please let me know.
Lemon68,
After posting, I realized that you only did lumpectomy. If anyone else has done double mastectomy, and has any insights as far as draining, please let me know.
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new2bc and lemon68, in my discussion with my MO yesterday she did mention that tumor size is part of the criteria for determining if you are a candidate for the oncotype testing. I haven't seen that in my readings about the Oncotype testing, but if I come across it, I will share it.
new2bc- I'm so sorry that you are uncomfortable right now- that stinks. I'd give your surgeon's office a call and let them know what you are feeling. The surgeon who did the surgery is in the best position to determine if what you are feeling it an expected part of the healing or something that might need a look.
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Well my BMX with tissue extenders is in the morning and I'm more nervous and scared than I thought. Hoping you all are having a good day.
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Kimberly1965- totally normal to be nervous and scared! Know that all your warrior sister friends are sending love and positive thoughts your way. Be gentle with yourself today!
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Kimberly196,
I wish you have a great surgery and good news to share with us. It is good to have surgery in the morning. Mine was at 2 pm which made me more nervous. I also had BMX but no tissue expanders. Be strong!
TMM60,
Thank you for sharing the oncotype info with me. I will ask my oncologist again to see what he says.
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I'm still reeling from the phone call I received last Friday. The radiologist that performed my biopsy called to confirm that I have IDC.
I don't know much yet; maybe it is too early to have more information than that? I see so many sister profiles with comprehensive diagnosis information and I wonder if I shouldn't have that information already.
My MRI is this Friday and I have an appointment to see an oncologist on 2/13. I guess I'll know more following that appointment.
I told my sister yesterday that I feel like I was told I have cancer and then locked in a closet as the diagnosis wasn't explained to me, nor was there an explanation of how to expect things to unfold and in what order. I suppose my old mantra of, "Time has a way or working out all the details." needs to be taken off the shelf and dusted off as I wait for time to pass and more information to come in.
@Kimberly1965: My guess is that you're also braver than you thought, too! I know I've surprised myself more than once when facing something I thought insurmountable at how courageous and strong I could be. So, take a deep breath, look at yourself in the mirror and remind yourself just how strong and truly wonderful you are!! (And I may be asking you to remind me of these same words or something similar when its my turn. )
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Momtotenkids: Positive, healing thoughts for your mom. Sorry to hear about her situation.
Kimberly1965: hoping surgery went well! Looking forward to hearing from you, brave warrior sister!
Koru, sorry you've had to join this club that no one wants to be part of. Check out this site's resources on understanding your diagnosis and pathology report explanations. They do a good job. What you will be able to learn at this point: your biopsy will tell you your estrogen receptors (ER +or -; PR +or-); the grade of your tumor biopsied; if you are HER2 +or-; what kind of cancer (you learned it's IDC). You can ask your oncologist for a copy of the report. Your dr. will decide next courses--may suggest other tests. Can talk to you about what he/she thinks this is, but may decide more information is needed. You will not get a cancer staging at this point; that comes at surgery. There's a difference between staging and grade--grade tells you how fast the tumor is growing (so grade 1 is the slowest, etc.). It really is a waiting game where pieces of information comes in slowly. It's frustrating, and scary, but it also gives you time to read up on all of this. When are you going to see a breast surgeon? That is who I saw first; I won't meet with an oncologist until after my surgery.
Sisters, I found another good information site, especially if you prefer watching videos: http://www.breastcanceranswers.com/
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Hi Koru! I'm sorry about your diagnosis but you are most welcome here and are glad you found us. You are early in the process and will have much more information after your upcoming appointments. The waiting and not knowing is hard but in time you will have the information you need. When I first got my diagnosis, in addition to all of the information I got from all of the docs and nurses involved in my care, I came to this site and started with the forum the moderators created for newbies just like all of us. http://community.breastcancer.org/forum/131/topic/775382?page=1#idx_1
I found the link called 'Your Diagnosis" especially good. It gives a really nice overview of the steps and people that may be involved in the diagnosis process.
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Hi Koru,
I am sorry that you had to join this forum. Some of the details will be revealed later after you meet the oncologist or the breast surgeon such as the hormone receptor status which is telling what your cancer is most respoding to. In my case, the stage or the grade or the actual size of the tumor were revealed after the surgery. Because sometimes, they are not exactly sure until the surgery is done and then they have to send the tissues to the lab which will take longer. This is a long journey from the time you receive the call from the radiologist informing you about the bad news. I received my bad news in mid December. I had to wait after the holidays to do some of the procedures because they were closed. It looks like that you have some of the most important appointments already scheduled in near future which is a good thing. I am sure you will have enough strength to ride this roller coaster. I wish you the best of luck.
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New2bc- When in doubt call your surgeon. A seronoma an occur anytime tissue is removed, very common in SNB and MX. I didnt know so I didnt know anything was wrong. I have great relief today now that it was drained. There has to be a big enough, or enough left of the tumor to do the oncotest, size matters for it. I hope you are recovering well today.
Kimberly- Wishing you strength and courage for tomorrow, you will be okay and we will be here waiting for you.
TMM60- thanks for the info on onco.
Koru-like the others I am sorry you are here. I think all the waiting is torture, I had and still am having a hard time with it. Educate yourself as best you can, make your list of questions. All of this will enpower you.
Addie- I am also sorry you are joining the group. Hang in there, the more info you get the better you will feel. Many of us are new to all of this. Its all overwhelming and scary. The boards here will help you get though it.
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Hi Koru....I also rec'd my call last week (on Thursday)...dx with IDC grade 2 & DCIS....I still don't have rest of my path report either....I go for MRI & mtg with radiation oncologist on Monday to discuss concerns as I also have OI ( brittle bone disease) & don't know if it will affect game plan or options. I completely understand what you mean about waiting...I felt like I was holding my breath till I got the call and more holding my breath again....we will both have all the info we need soon enough and then be armed with confidence & a plan of attack to forge ahead!! I'm here for you...sounds like we will be on similar time lines for decisions and treatment. All my best to you & the rest of the ladies here
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Kimberly -- I hope everything went well with the surgery!
Fellow Sister Warriors -- I just need to vent (yet again). I've had a few rough days. It seems that with every doctor, I have to wait at least a week to get on their calendar and so forth. I've decided on a BMX with immediate DIEP reconstruction (don't even get me started on getting an out-of-network approval for the PS, still battling through that). This of course has both the BS and the PS telling me that the earliest is early March for the surgery. My BS says that I'm "early stage" with the low Ki-67 score and Grade 2 with less than a 2cm tumor, so he's comfortable with me having my surgery in March. However, that'll bring me to 2 months after diagnosis. I just want it OUT of me! I've also had many many dark thoughts the past week. My back has been hurting for a couple days (feels like a bruise, but no bruise, and I've been sulking too much to have done anything to injure it). Both my oncologist and BS don't seem concerned at all, but ordered a bone scan to make me feel better. I'm also scheduled for a CT scan because the PS surgery does it standard. Needless to say, I don't mind having these scans as baselines, but also terrified that they'll reveal something else. UGH. Okay, I just needed to get it out of me. Thanks.
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