2013 Sister Warriors
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Kimberly1965 - My tumor is about 1.7cm and a week after a biopsy my onc. said it measured about 4cm but said she was sure it was from the biopsy. Today (2 wks past biopsy) she said it was back to under 2 cm. Hope that makes you feel better.....
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I too am expereiencing great stress tonight. I had my post surgical appointment last week but the pathology reports weren't in. They set my up with an appointment for tomorrow with an oncologist. Today the surgeon's office called and he wants me to come in before I meet with the oncologist to go over my path reports. I do come from a great distance, 90 miles, but if it were good news wouldn't they just go over it via phone. Is it normal to have a face to face with good results, or do they only save those for more bad news. Stressing big time.
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Well saw the PS and BS I will have surgery on the 7th bmx w/ tissue expanders. Can't find the dang sports bra I have to have. So that sucks. Just hoping all goes smooth. They said I could be in surgery 8 or so hours but might not be that long. Funny thing is he said your other breast droops more. I said well it was always the bigger one till I got invaded by the alien and you all started disecting it and now it's huge. Not my fault. I'm hoping to get better replacements. Something good has to come from all this we all are going through. Scared to death and nervous. I just want to wake up a survivor. Ill handle the chemo just don't want to wake from this and hear well you still got some still in you.
Hope you all are well as well as you can be. Since my birthday is the 1st I think ill celebrate it on the 7th after I wake from this nightmare.0 -
Honestly kk it could go either way. I work in the hospital where all my treatments are done and even though they know me they still don't like to tell over the phone either way. I begged them to go a head and tell me. They did and no mine was not good and every path report I have gotten has gotten worse. The final path report is the one that counts the most so if that's what your going for it just procedure to not do over the phone. Hippa regulations they shouldn't they honestly don't know if its you. Hang in there sweetie. You got this. We all do. One day at a time. You can always personal message me ill talk to you if it will help.
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Hey everyone, guess I will be joining the 2013 Sister Warriors! Was going through the emotions of getting my diagnosis and actually coming to terms with it when my PS told me I had to stop smoking. No nicotine 14 days prior to surgery, which means no patches, gum, etc. Cold Turkey! I am 56 and have smoked for 35 years. Also, stopped my HRT on Tuesday. Needless to say, I have not been a very nice person since last Friday. Have SNB on Friday, then BMX on 2/13. Glad to be on this site with so many positive and upbeat ladies! Prayers to you all and especially my poor husband! Will I ever be "normal" again?!?!?!
Goodnight all!0 -
I understand totally!!!! Doing the same thing myself. Mine is scheduled for 2/7! Hang in there we will do this together!
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I am so sorry to see all these new faces...sorry that any one of us needs to be here. But, it seems to be a great site with a wealth of information and lots of supportive people.
I have a question, not sure if anyone here can provide insight. When I called my BS office for the stain results the nurse said that I was ER+/PR+/HERS2-. When I got the lab report in the mail, it says that there was very weak ER staining (5%) and high PR staining (greater than 95%). So, technically I am ER+, but not very. I read somewhere that under a certain % they treat you as negative to that receptor? I am curious, for any addtional treatments, how I will be treated.
Any insight?
Thank you!
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momof5inva- I searched the site and found this reference. It seems to be a really good explanation of the ER/PR thing and what it means. Hope it helps! http://www.breastcancer.org/symptoms/diagnosis/hormone_status/read_results
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Hi TMM60 - I did read that, it was good information, for sure. But from what I have read elsewhere, it seems that most of the hormone therapies are directed at estrogen, not progesterone, for which I have the most receptors for.
OT, I went to the endocrinologist. The lump I felt is actually a projection of the cyst I had years ago, and there is a solid component inside. He also told me that I have a 1.8cm nodule on the OTHER side. Both solids nodules need to be biopsied, just to be safe. That will done 2/11. Not too worried about that.
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Venting alert: So after two weeks of submitting my genetic test samples, I finally get a call from the company regarding authorizing the test (what the heck were these guys doing in the past 2 weeks?!). Turns out there's two parts to this test, and my lovely insurance company considers the second part, the BART as "experimental". In order to get a "full" picture, I need to pay $700 because my insurance won't cover that part. Yes, I have $700, but considering all else, do I really WANT to pay $700? I've decided to do a bilateral MX already just to give me a peace of mind. Dealing with insurance companies stink. I'm also still waiting to get my surgery date to get the dreaded tumor out of me. I need sleep. Cancer stinks.
*end rant*
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Hi Cuetang,
Vent away! It is annoying when you are waiting and waiting, only to find out your paperwork was sitting on someone's desk. I had the BRAC 1/2 testing done last June, but not the BART.
Of course on one can answer the question as to whether or not to spend $700 on additional testing, but according the the MYRIAD Pro website "on average, a less than 1% chance that BART will identify a mutation in a patient who has already had a negative result from Comprehensive BRACAnalysis." My BRAC 1/2 was negative, so I would have paid an extra $700 when I knew the chance of finding anything else was less thant 1%. Of course, they never offered me the option, LOL, but, I think the odds are pretty good you will get the answer you need with the BRACAnalysis.
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Hi Cuetang,
Vent away! It is annoying when you are waiting and waiting, only to find out your paperwork was sitting on someone's desk. I had the BRAC 1/2 testing done last June, but not the BART.
Of course on one can answer the question as to whether or not to spend $700 on additional testing, but according the the MYRIAD Pro website "on average, a less than 1% chance that BART will identify a mutation in a patient who has already had a negative result from Comprehensive BRACAnalysis." My BRAC 1/2 was negative, so I would have paid an extra $700 when I knew the chance of finding anything else was less than 1%. Of course, they never offered me the option, LOL, but, I think the odds are pretty good you will get the answer you need with the BRACAnalysis.
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Thanks momof5inva. It's like there's not enough already we have to deal with after diagnosis, but to figure out all the other details. I appreciate your feedback on the BART and the BRCA (I was too annoyed to even think about looking that one up an hour ago). Additionally, I hope your nodule biopsy goes well. I recently had a thyroidectomy after years of dealing with nodules and goiters (got fed up and took it out last Fall). They are so common, it's just annoying having to go through another biopsy.
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Ya, the thyroid thing is annoying...especially now. I have been going back and forth for biopsies for 10 years. But now I can SEE it through the skin....ewwwwwww LOL. Very annoying. My endo said my thyroid had multiple "goiters". I must say, I am not sure why, but I don't like that word
So you still have no idea when your surgery is?? The only reason I have a clue was that the nurse at the BS office said she thought she saw me on the schedule for the 13th of Feb. I am still waiting to hear from the PS to confirm this. Plus, there will be pre-op appts, I assume. I know some folks say there is no rush, and I KNOW in my mind there is no rush, but honestly, I just want it out, and I want to have a definitive answer as to what is going on (staging, nodes, my other breast, etc).
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Nope, not yet on the surgery date. I have one more appointment with the BS. I'm having a slight "disagreement" with the PS on the type of reconstruction. The PS is also out of network, so I'm trying to work with his oh-so-slow office in trying to get his services approved. Needless to say, it's a mess. Hopefully by next Wednesday, I'll be able to have a date ready. That's why the whole genetic testing thing just set me off.
I agree with you -- I want it out of me so I feel better about where I stand and how to move forward in life! The only thing in the near future seems to be doctors doctors doctors. More "hurry up and wait"....
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Cuetang, my insurance also said they wouldn't pay for the BART. But given what momof5inva outlined, I just said forget it.
My surgery date is Feb. 25. My dr. is out the following week, so it will be more than 2 weeks before I have my follow up meeting. Uggh. I can wait a week, but two weeks to know what kind of treatment course I'm facing?!
Welcome to our newest club members!
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My biggest problem is that I feel like I am just a number...I have to ask for information, had to call for pathology results, had to just call to follow up on surgery date ("oh, no one contacted you to confirm" she said - u, no, if they did, would I be calling just for FUN??), no one cares if my rib hurts, no one cares that I have lumps on my thyroid except me....no one tells me what the next step in this process is...I am so annoyed, that I have to fumble through this. SIGH... on the bright side, today is my Friday
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Ok, so what exactly is a "Breast Care Navigator"? The reason I asked, is that when I went to web site of the breast care group that my BS/PS and the hospital are affiliated with, it says they have these navigators, that are supposed to help you? Ummmm, no one told me about them. I don't get it. I was given some numbers for PS and I was on my own after that.
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Momof5inva, the BC navigator is supposed to be coordinating between different offices and your pointperson for any questions, concerns you have. Should be wealth of information and support. Ask your BS office for the name.
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ReneeinOH - I just had them cancel the BART test aspect as well. They'll hold my sample for 60 days, but if I want to do it down the line, I guess that's always the option. As long as I can get the BRCA test I'm good. I feel ya in terms of the surgery date and so forth. At least now you know so you can plan forward in prepping for it and healing after surgery!
momof5inva - as if we don't have enough to deal with right, along with having to see if the offices are "on top of things"! *grr*. As for the BC navigator, ReneeinOH's description is exactly what I understand it to be. My BS has his own breast care navigator, and she has been AWESOME in handling things for me and very quickly. I would definitely touch base with one and see if they are helpful to you.
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I just called...she seemed perplexed as to why I was calling?? She had all my records. Asked some questions, and said, "well you already scheduled your PS appt so you are on top of it"??? Apparently they have my surgery time, I have already been scheduled for a post-op appt...Only, no one told ME. Last I spoke to the BS office they said they "thought" I was scheduled for the 13th, but someone would call to confirm. No confirmation...until now. Anyway, I guess I have to be my own general contractor in all this.
Thanks for listening.
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PS...I am crabby to today
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Wow momof5inva, that is an unfortunate response from your dr.'s office. They should be falling over apologetic that they aren't providing better support for you IMO.
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Cynthia- I hope things are going well for you on the NO Smoking issue. Not an easy thing to do. Hope you are getting through it and that each day it gets a bit easier for you. I am not sure if we will ever feel normal again. I think our new normal is going to be a normal filled with fear and what ifs, for the rest of our lives. For me I am hoping for another 44 yrs so fear and what ifs on my shoulder are going to need to SHUT UP because I am going to get though this and LIVE that alone will make things normal. WE will find a place deep inside where we can move on with the knowledge there is always a chance but also with the knowledge our odds are good we will overcome this forever. I went and read the ILC Survivor Thread, many many women in worse shape looking back 10, 20, 25 yrs and are healthy as could be. I search for a reason and I know I wont find it, I right now feel or it makes me feel better to think WE are the strong chosen ones because a higher being knew we could do this and in turn help others.. or find meaning. I feel I have gained by the women here so although this is the worst nightmare I do find peace with others living it with me like you. xo
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Cynthia- Good luck tomorrow on your SNB, mine was 1 week ago.. Ill be thinking of you. REST REST REST and get the drugs!! Be strong and know although we arent next to you tomorrow in spirit we are all around you holding your hand.
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Yeah ReneeinOH you have your date! Discuss with BS how & when you will get your results. Should be sensitive to the anxiety of waiting. There must be a way to get info in 1 wk.
Reading BS treating as number ugh. Is there a Cancer Center in your area with a BC support group- they were a life line for me. I ran there the day I was dx.
Cynthia pray you are home & healing quickly & no desire to smoke. Oh those nodes all clear!
We made it Jan Warriors now go Feb Warriors!
Glad we can support each other but sad the Warrior list is growing
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THANK YOU, THANK YOU, THANK YOU for the words of encouragement. The not smoking continues to be difficult, but is Day 6 and I can say I am smoke free. I will be holding your hands tomorrow too! Praying for all clear on the nodes!
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I am so sorry that some of you are having to quarterback your own care without the help of a Care Navigator. They can be a very valuable resource, as I am learning. But, the fact that you are here in this discussion board shows just how powerful and engaged we warrior sisters are! This whole journey that we are on together is full of twists and turns and unknowns.
But we are ultimately in control of our own bodies. Seek the information you need to make informed decisions for yourself. Speak up when you have questions or concerns at your appointments or just don't understand what is being said. Always nice to have a friend or significant other at the appointment with you as they are a good second set of ears to pick up what you miss- but not always possible, I know. If you forgot to ask, didn't know what to ask or got overwhelmed with the information that you got at the time, call back or write them down for your next appointment. You can ask for copies of your test results. Keep them in a notebook or diary if that helps you and bring that along with you to your appointments. Particularly if your healthcare system doesn't have an electronic medical record so the other specialist has to rely on paper that may or not have made it to their office.
I know, we shouldn't have to. There is so much new medical knowledge that no one person or specialist can be an expert in all things. But there is no better keeper of our medical story than ourselves.
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So, I got a "confirmation" email from the PS regarding the surgery. Says I am scheduled for 12:30 pm at the ambulatory surgical center for an OUT PATIENT procedure???
I mean really??? My BS said it would be at least one night...a lumpectomy is out patient; I am having a BMX with TE. Of course I hate when I receive correspondance such as this after hours.Are drive-by MX common? I mean, I was told 4 hours plus for surgery....so they will be sending me and my poor DH home at midnight? WTF. I do hope this is a mistake.
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Geez momof5inva, it just keep getting worse. That does not sound right at all. That's a major trauma to the body. I'd question that. Personally, I don't want to stay in the hospital that long (don't need to catch anything while I'm there, plus never can get sleep...), but need some time for the anesthesia to wear off, get coached on what to do with the drains, etc.
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