Calling all TNs
Comments
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Lory - it's not that the cancer changed. It's more likely that as more information was obtained, the full extent of your cancer became more clear. There would be much more tissue with much more information available after the lumpectomy and node dissection compared to the initial biopsy. My initial biopsy pathology is much different than the pathology from my mastectomy and axillary node dissection.
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Hi ladies,
I'd like to get my mom going on your private Facebook page
I'm still working on getting her some modern day internet service, slowly but surely it will happen lol. She came over a couple of weeks ago and I got her set up on Facebook. She really enjoys talking to other women who she can relate to. 0 -
Luv have you not brought up some things to think about. I have been waiting for a couple of days for my results from my CT & Bone. I had to have that moment of everything looks good on my mammo anyway because that is where they found my first.
EnglishRose I too have asked some questons only to find out later they said I heard it the wrong way
And EVERYTHING is so confusing when they explain it rather alone read it to you from one test to another. I sometimes get scared to death, for a LOT BETTER choice of words there. Luv very good way to put it full extent of the cancer because you do get it in pieces and then I know I try to put it together and rationalize it from one to the other. PRAY your clinicals are working great and they show the same on your CAT scan Friday.
Lory I hope you ask them and share and let us all know, sure helps when we all can compare our reports and worries and put some pieces together.
I am not embarrassed to share in here and I am totally LOST!!
I keep jumping when my phone rings thinking it will be my call. Guess it looks like they will inform me tomorrow at my appointment.
For EVERYONE in here Prayers and THANK YOU for sharing.
Karen
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Dr. Called, I am now stage 4 it's in my liver and chest nodes. I so don't want to tell my husband.
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OBXK: Very upsetting to learn of your news. Your husband will be right there to support you. How did this recurrence become known to you? Were you at a routine 90 day check up and the labs alerted your doctor that something was going on? Regarding your husband, he might be bracing himself for the news and being strong for you. He will be amazingly strong for you and together you will both tackle this. Sending you much prayers and hugs!
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English Rose:
Hello!
Different tests will have different cut offs to be considered ER + or PR +. I know firsthand, as my Oncologist ran every single test available to ascertain if I could benefit from Tamoxifen, as I'm TNBC. And with those tests, he painstakingly (probably more to him than me) explained everything to me about each test. While at times the information is extremely scientific and hard to understand, this is a general summary of what he has taught me:
The GenOptix Aqua Test (newest test for identifying receptor status) had a cutoff of 1% to be considered ER+. Some Doctors will also interpret the % to include in their assessment of the treatment, especially on a borderline result.
My Oncologist, who is Triple Board Certifed and a PhD explained the various tests will test things at various molecular levels. For instance, you have the protein level, the DNA level and the MNRA level. This framework is analyzed to understand the sequence of information in the molecular biology of things. (I'm sure I got that last sentence wrong .... he goes very deep, draws me pictures of these levels, etc).
Some tests use qualitative analysis methodology to reach results, while other tests use a quantitative analysis to reach results.
Example: The Oncotype DX test is Quantitative, vs GenOptix which is Qualitative. The Oncotype DX test can be just as useful on a biopsy, because there can be more tissue present.
Back to your records - My suggestion is for you to request a complete identical copy of your file for your records. That way you are not blindsided with any information later in time. Even something in your file, that they feel is not of importance to bring to your attention, could actually be something you may want to know in the overall management of your treatment and care.
In your file, for each test result for your receptor status, there is usually an accompanying page for that test, which lists the score and % to be considered + or -. My results also had correlating graphs and charts to further explain the score in relation to the percent cutoff.
I emphatically urge every one on this board to have copies of all your files (complete files) from each office that manages your care. Also, request your file from the hospital. Then once you have your files, at the end of each office visit, or after they call to tell you of lab results, request they send a copy in the mail to you.
Some Oncologists and other offices now have all labs, pathology and radiology tests available online for the patient to view at any time. It is rapidly becoming the norm that patients want immediate access to their information. It is your information and you have a right to it.
I hope this helps you a little bit!
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Karen oh my god I so didn't want to hear this. I cannot believe it and crying is not the word here. I feel devastated for you. No wonder you don't want to tell your old fellar. But he will support you as always and you will get through this. Many live for years and years with stage 4 mets and you will too. Be strong girl you can get through this I know. Sending as many hugs that I can fit around you all with my love. I just cannot believe it. Annie
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Thank you Annie. I had my PCP order a PET/CT, because I have been very fatigued - that is always my big symptom, as I am hypomanic, and usually have too much energy.
I'll know more after talking to my Dr. Tomorrow. I'm just numb right now. House filled with middle schoolers, keeping me busy.0 -
Damn OBXK...I am so saddened by your news. keep us posted love and we are here for you! LOVE AND KISSES
Maggie
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OBKX.. hugs and love coming your way. No words... so sorry. Agree with everything Annie has said.
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OBKX .....so sorry I really don't know what to say ...Lots of prayers.
Karen
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OBXK~ love, hugs and the strength to fight this and win!
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OBKX - extending arms to hug you across the miles. I am so very sorry you got the news none of us ever want to hear. Please know that we will all be with you - every step of the way. Praying for this beast to be kicked to the curb for you.
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OBXK - Crappity crap, I hate this freakin' disease. It all seems so random and unfair. Good you got the PET so you know what's up and can get a treatment plan in place. Hugs, hugs, hugs, my dear.
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My God cancer really does suck today.
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not sure if I should jump in here or not.
Got my results today from my pet too. Doc says the lung nodule is almost definitely scar tissue and NOT lung mets. She said it is very common on the rads side as where it is located is a protruding part of the left lung. Happy for me (selfish brat) but my heart is broken.
OBXK -- I am praying for you that you get the meds that will kick this s**t to the curb. You have always been there for me too whenever I come on here with an issue and you are such a supportive sister in this journey. Be strong and fight
Maggie
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Mags we can always do with excellent news. Way to go girl. Not a selfish brat at all just wonderful news. Annie
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Inmate, Hope, OBXK and every one of us needing big hugs of love and support...
All the BC warrior sisters are clasping hands and encircling you tonight, and every day and night.
Stay strong ~ Shar
After I typed this, I remembered that scene (I guess I actually stole it!) in the movie Practical Magic, where Sandra Bullock's character recruits the town's women to clasp hands in a circle around Nicole Kidman's character, in order to exorcise the demon inhabiting her. Once done, they sweep the demon-dust away with brooms. Black magic aside, what a dramatic way to represent kicking this beast to the curb and beyond, and to show the strength and devotion of the BCO sisterhood. We're all in this, together.
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OBXK - Here's another warm hug and hope you feel the support we sisters are sending you. Your husband will be your comfort and support while you tackle this latest beast. I can't begin to express how saddened I feel. Please keep us close. Jan
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Mags!!!! Enjoy your good news!
Thanks for the love.0 -
Karen so sorry to hear your news. ((hugs))
Hope they get a plan in place for you soon so you can kick cancers a$s
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Crap Karen....crap crap crap...
I dunno...triple negative is so freaking scary...try to believe that it's maybe not so bad but it keeps coming up and slapping us in the face...
Ya know...I was going to come on here and tell you guys that PinkOctober is already driving me nuts..my FB is pink, the TV is pink..along with all the political commercials..it is driving me crazy.....reality is HERE..not the pink stuff
Conversation with husband tonight....Husband: "you know it is PinkOctober"...Me: yes dear...it's everywhere I go, see, and do..it's everywhere and I can't escape it....Husband: But you know that this people really care...they do! ME: I know that..but they don't get it....HUSBAND: But they are trying to help ME: Tell them to go on BCO and read how
BC isn't pink, it sucks, it kills,....then have them come talk to me. HUSBAND: no response to that.Sorry for the rant....just wanted to put in my 2 cents cause pink didn't help our lovely ladies at all....
On another note..my dh and I are going to the beach in exactly 4 days...we are going for almost a week...I really think I need to see the ocean and the sand and the sandpipers...I need to relax..I have so much anger built up inside of me sometimes.... I just wish that I could go and have fun and let go but I don't know if I can...something just hurts deep inside me about this ff'ing breast cancer...
Dx 3/18/2009, IDC, 1cm, Stage I, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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(((((OBXK)))) sorry to hear your news.
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Titan - I know how you feel. I don't think I can take much more of this crap cancer when it is affecting all of our beloved friends. All they want to do is live healthily and happy, no riches, just healthy and happy. Is that too much to ask. I'm not even sure prayers are helping anymore or if they ever did in the first place. Why can't it just go away and leave us in peace now. We have had the treatment and now have had enough of it. Cancer sux big time today.
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OBXK~ sending you another (((hug))) you are surrounded with the most caring and wonderful support here!
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(((OBXK))) Karen - I am so, so sorry. I do know exactly how you feel, and I must encourage you to let your husband in, let him support you. You need to be able to release your feelings and you can't easily do that if you've not told him. There are lots of treatment options - I encourage you to check out the stage IV forums and introduce yourself. You'll find lots of women who have been down this road before you and they will be able to offer plenty of wisdom based on experience. Sending you courage, hope and love.
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OBXK- So so sorry... I hate cancer so much! Big hugs to you. xx
Mags- Very happy you got good news today. Celebrate it!
(((Hope and Inmate)))- thinking of you guys. xx
A BIG group hug is in order again tonight. (((((All together)))))
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Hey Gang,
Well darn...........I am so sorry for the losses I have read about. All of them, but I did have the pleasure of talking with Suze35 and she helped me out so much in the beginning. I had to leave the forum because I was trying to stay so positive and even with the good post at the beginning you all know it is the bad stuff that sticks out. I had several weeks of therapy due to lymphedema and back issues. I went for 6 weeks got released it was no time I was back there again for another 6 weeks. I have had so MANY emotions and just learning how to deal with them and all the remarks that people make, losing people I thought were friends both in real life and online after my diagnoses and treatment.....hurts but what do you do. I guess some people were just not suppose to be in my life after all. So, I decided that maybe I could come back and darn I get on here only to learn we lost several. I have never put my head in the sand about things, probably the opposite but I think I found peace and then with BC awareness month being here new things are coming around and I read an article on survival being 75% for us versus other BC and now I am fighting to not go back to square one. I know I could die from something else but the cancer just sticks out. The doctors have ask me if I am ready to have my port out and honestly I am not. For comfort yes, security in knowing I won't have to have it put back in yes.....might be silly but you know they say if you are prepared for something it won't happen.......:). I know that is not the truth but I have mixed emotions because as much as I am trying to stay positive (I am not real good at it) I just have an eerry feeling that I am not done with this yet. I hope it is my anxiety talking but I have some issues popping up here and there and it is really scaring me. When did you all have your ports removed? How long did you keep it before removing it? How do you all deal with the deaths of others without letting it take over your thoughts?I really wish I could come here more often but my emotions just won't allow me to do so.
God Bless!!!
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OBXK - I just want to swear and hit someone so hard, crap. I am so sorry, my dear. I honestly have no words of wisdom, nothing. All I know is that God will give you the strength, he is the one who knows your path and why you are on this path, and he will take you out of it, as well. There is a saying which I have heard "not one leaf on a tree moves without the will of God". Imagine that? If he knows about a leaf's movement, how can he not know us, one at a time? If this is God's will so be it, whatever may, nothing is in our hands except to do the best we can with the information we have.
Englishrose - I wanted to respond to your post. I know that PR+ people were very few, however, am happy to learn from your post that it is only 3%. I am slightly PR+, and was probably the only one my Onco. had. I was 0% ER, but 5% PR positive. My Onco. gave me aridimex and I took it so well for 2 months, but after that, I almost became disabled. I could not type, my hands were numb and stiff and I suffered immensely. I stopped. He said he would twist my arm if he has to, to make me take it, but I told him the benefits are not good enough compared to the side effects. He did agree with me that they didn't know much about PR+. The surgery path report indicated that I was 3% PR+ at first. I finished my entire 4 months of chemo, and then it occured to me when they brought up the issue of hormonal therapy, that I should re-test the cancer. I requested my Onc. to re-test it. They sent the tons of slices (sorry, forgot the exact medical term, but it sounded like slices) to University of Calif. San Francisco for the second test. They did a very thorough analysis. I used to call these labs directly. It seemed to me that no patient had ever contacted the lab directly. They were very polite to me. I spoke directly to the Rads guy who reads the stuff, and I asked him a million questions. When the final report came from UCSF, it said a lot of different things. My total score was really very low, however, it was the basal type, which scares the shit out of me. They say that it was a very difficult tumor to diagnose. At first they thought it was lobular, but only at the end, they finalized that it was ductal. I will tell you more once I dig my path report out.
I would like to believe and continue to believe that since Progesterone is a more friendly hormone that PR+ cancers are a little calmer, less aggressive (knocking on wood really really hard!!!!!). Also, it was Grade 2, triple negative. I have always believed that in my case, it came from HRT (over the counter progesterone which I was using on my skin for several years) caused my PR+ BC. I had read Dr. Lee's book "what doctors don't tell you about menopause" and in that book he talks abuot how progesterone is such a good hormone to have and that herbal progesterone from health food store, which is natural is great. I was having superficial problems such as hair thinning and decided to use the cream, not knowing of its dangers. I think it was safe to use before menopause but highly unsafe when menopause started, and that's when I continued to use it. Today, I wouldn't touch such things, in fact, i hardly enter a health food store, except to buy various healthy flours and grains, not any vitamins or progesterone cream, which has not been proven in large large studies. Englishrose, I don't remember what grade you said yours was, but please don't think it is the worst cancer, as I am still here, doing well, still alive.
I will try to dig my path report his weekend and give you more info. I know you needed the info. before you saw your Onc. I am sorry I wasn't able to respond before today.
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Hi all
Just to catch up with a few gals from 2009 withTN, I am still here after 3 years post treatment. Been a wild ride and I am still scared. Hugs to all.0
