Member of the "6 Month Watchful Waiting Club", Unite!
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Tinker, I had 3 sentinel nodes taken. I haven't had lymphedema so far. I take effexor and works well. It took me about 2 or 3 weeks to get used to it, but it has helped tremendously and is one of the few meds that doesn't interfere with tamoxifen. I felt like a zombie at first, but was nice change from wanting to have and fighting anxiety attacks all day!
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My daughter in her 20's went for her follow up 6 mos Mamo screening, it was benign. It was followed by an MRI because she is being watched very closely. MRI showed: Heterogeneous circumscribed Lobulated Mass of 1.5 cm. Biopsy being done this week. Also behind it a non mass enhancement of 1.2 cm. BIRADS 4. Which of these words are not so bad. Radiologist said it's a very high probability of it being benign.
Anyone know this exact wording, please? Biopsy is being done with MRI probably using vacuum. Could they take out a 1.5cm lesion? Or they will just biopsy it? We'd like to be prepared.
Tinkerbell I think BS are in a quandary if they don't deal with the nodes and leave something then thye could be sued and actually miss a diagnosis. I don't think there is a right answer. I am so sorry you have to deal with that. I know they have special sleeves that could help with lymphedema, even some people that go to a trained masseuse. And it does help.
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Tinkerbell - I've been thinking about you - it's good to hear from you. I am so sorry to hear about everything you have been going through. I am not adapting very well to this process either. My next 6 month appt is March 20th. My Xanax is no longer working. I Can't get myself to the doctor to get something else that might work because my anxiety is too high to go. I feel so pathetic......
Momallthetime - hello - I read your post but I don't have an answers to your questions. Please let us know how your daughter makes out.
Frankie
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MomAlltheTIme - I think that you were answered on the MRI thread you started with the same questions. What happens at each biopsy depends on a) what your doc orders; and b) what the radiologist is comfortable with after he sees the site. Good luck. Hoping for B-9
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MinusTwo - well reread the report, there was another 1.2cm nonmass right behind it, today was Biopsy day, Radiologist said she started at the Center and thinks she took most of it. I will wait for the pathology, really hoping it's just fibroglandular stuff, and then we'll see on the biopsy report she did what exactly was taken out. thanks
Frankie -Thank you all very much.
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Hi Ladies - I started this thread 3 years ago. Every mammo has a call back, some confusion because of my dense breasts, focal asymmetry, calcifications and cysts, and then I'm sent away with the Birads 2 or 3 catch all ratings.
I recently left the military health care system and its antiquated radiology and will have my first ever 3D scan next week.
I'm literally scared to death this amazing technology is going to find something - I am happy at now having better screening but... Everything is going so well now that we're retired, I've been able to lose 10 pounds and get into better shape (still have 20 to go), daughter situated in college. We have fun trips planned for the summer. And I just have that sinking feeling the rug is going get pulled out from under me.
Has anyone had this experience? Thanks for being here, ladies. I can't believe there are over 1,000 comments on my thread, so glad we can all come here for understanding and comfort.
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good morning ladies ! I try to remember each day that life is a gift . I have good moods and not so good moods but if I concentrate on what could happen , it will be for sure something else I had not thought of that will be the issue. My point is : try not to worry until you have to . All of our bodies could use a break from stress . Don't sit there and "wait for the other shoe to drop" . Just my two cents . Love to all . I am almost all recovered from my surgery and doing well.
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desertstorm 2014 - thank you sooo much for starting this thread. It has been/is a lifeline for me. My appreciation to you for starting this group knows no bounds. Yes, I have had/have the same experience that you are having. I am being followed every 6 months for 2 years with diagnostic mammograms and ultrasound for bilateral calcifications and a cyst. My last 6 month mammogram was suppose to be 3-D and I had the same feeling that the rug would be pulled out from under me with a 3D mammogram. I too was grateful for the technology but also afraid of it. When I got there they didn't do the 3-D. My next appt is March 20th and I am scared to death too. I don't know about you but I find my anxiety increases every time. I have tried many things to calm down (including counseling) and I just can't. It is embarrassing. Xanax the week before an appt used to help a great deal. Xanax no longer works. I've seen so many doctors and had so many tests since this started, I don't even want to go to my doctor to get a different anti-anxiety medication. (I was worked up for endometrial cancer at the same time they thought I had breast cancer. It was 90 days of testing. I avoid doctors at all costs!) My friends and family do not want to hear me talk about my fears anymore so I don't. I keep it to myself. Please let us know how your appointment goes and check in with us as the day approaches. In your pocket.
Frankie
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I can so relate to this-- the mounting anxiety before appts, the feeling of waiting for the other shoe to drop. I have an MRI coming up next month and while I realize I'm fortunate to be watched so closely through sensitive technology, I also get scared that something will be found. I've been doing this 6 month thing for 6 years now and have difficulty imagining a lifetime of this. It doesn't help that the risk increases each year either.
Last visit my BS mentioned the possibility of going back to yearly screening, and while I would be thrilled to cut these screenings in half to avoid the craziness that for me accompanies them, at the same time I would be frightened that something might be missed.
After 6 years of this, having tried medications, cognitive behavioral therapy, and meditation (to little avail), I'm just convinced that it is what it is and that who wouldn't, in our situation, feel anxious? I just try to power through, but it's hard. I now dread all doctors' appts. Ugh. And yes, most people in my life are tired of hearing about it, have forgotten my 6 year old BC scare (originally dx'ed with dcis but later downgraded) and see me as perfectly fine
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Thank you sooo much, dj and mom! I am so glad the thread helps. People just don't understand this, and like dj said, no one in my family cares to hear about it anymore. I had my first scare in 2005, then a ductal excision in 2007 and off and off cyst aspiration, etc and all of these appointments. Ugh! So glad you ladies are here.
mom - I went back to annual screen 2 years ago, it totally freaked me out. That was much worse for my psyche.
I agree with you, of course we're going to feel anxious - can you imagine if a man had to get his prostate checked for cancer every 6 months?!
Wish I had more coping tools, talking you you lovely ladies sure helps!!
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desertstorm, if you don't mind me asking what was the result of your ductal excision ? I have also just had one . Hoping it never turns into anything down the road because I have ductal hyperplasia.
Thanks .
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Hi everyone
Yes I understsnd the anxiety, stress, depression, and sadness. I too go through all these emotions. Which is what got me into this new mess im in. I had 3 lymph nodes removed because they swelled and my anxiety got the best of me if not for the prior adh diagnosis i would have waited for surgery instead now I have to worry about lymphedema for the rest of my life too. My breast surgeon made it sound like a walk in the park. My breast swelled like a cantalope wirh my period so im going to see a lymphedema therapist for diagnosis. March 16 I have my mammogram and now im not sure i even want to do this because im afraid of my breast may swell even more. I'm excisting but not living im really trying to cop, but it gets harder everyday. I'm thankful I dont have cancer. zanax is not working for me either and they prescribed lexapril and made my anxiety worse. so not taking it. My family tells me im going to be all right and of course they don't want to here it either to them im paranoid. They are probably right. Women have lived with adh for years and not even known it and never got cancer. some ladies have had 20 or more lymph nodes out and never got lymphedema. I just wish I could think this way instead of the worst case scenario. Which of course its what scares me to death. so ladies all we can do is convince ourselfs that God will protect us and it is what it is. Only he knows our future so im trying to LIVE LIFE one day at a time and praying alot. Good luck to everyone on upcoming tests and I'll be praying for all of us.
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Hi Ginger! I had a lot of discharge from my left breast so they decided on the excision- had two papillomas (we could only feel on on the examination) and everything tested benign. The scar was under my nipple (like a smiley face mouth) and mostly went away in about 6 months.
I know the waiting is hard, I'm here for you!!!
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Tinkerbell, thank you for your words, and I think a common theme is no one "gets" what we're going through and they try to downplay it to make us feel better, but it makes us feel worse!! Like we're hypochondriacs, chicken littles, etc!
So glad to have all of you here with me!!
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Yes, specifically, I think what others don't get is the nature of this grey area we fall into. We have a biopsy and everyone proclaims, "hurray, it's benign!" While it certainly could have been much much worse, the benign findings do not put us totally in the clear, and so the initial relief is followed by the often excruciating "watching and waiting." These 6 month checks continue to make me totally insane for about a month before, when it's very easy for me to convince myself that this will be the test that finally finds IT
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momo you are so right. I too was so happy to hear the word benign and then the adh part came and i felt like a scoop of ice cream melting on a hot day. This can't be good for the mind it steals the life right out of me . I have good days and bad days like you it starts a couple of weeks before my next follow up. Now im worried they might squeeze my bresst to hard and cause full blown lymphedema. I dont know if i should wait another month to give my body a little more time to heal. I am calling my mo tommorrow for her advise. I hope good days start coming because I haven't had one for a while. I feel so pathetic.
Deserstorm thanks for starting this thread it has been really helpful and connecting with everyone here has been a blessing. Try to think positive i know better said than done. I will try to do the same.
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Pseudoangioumatous stromal Hyperplasia and fibromatoid changes - these is what came back in path report. It seems she is scheduled only in 1 yr to come back, I thought maybe they should do 6 mos. but they seem comfortable with that. I hope so. Did anyone here ever hear of these findings? It's also the History of having a sister diagnosed with BC so it freaks me out, but they know she is high risk so...for now we are happy. Always worried!
This business of family and friends not getting it, is one of the many reasons I tend not to tell anyone when my daughters need to be checked, it's too much work to explain it all to everyone, if I think someone could help I would ask, otherwise it's only a burden. And the way things are now, it's always in our minds, 24/7 it's something we live with.
Desertstorm it's a wonderful thread, good for you.
Tinkerbell so sorry you have to go through the lymphedema, it's not normal not to be scared, i think.
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Thank you desertstorm
I had bleeding from my nipple no papillomas, just ductal hyperplasia and focal dilatation . time will tell . Enjoy the week edn !0 -
Every mammo has a call back, some confusion because of my dense breasts,
Desertstorm
The last 2 mammos I had were 3 D. I think it is abetter for no callbacks and instant results and less mistakes. You may read that I had a problem with LE afer my last mammo, but the 3d had NOTHING to do with that. The procedure is IDENTICAL. It's only the imaging that is different so pls dont let that scare you.Less false 'uh-ohs'.
I am very happy with the 3 D.
First at MGH Boston, then Cooley Dickinson and now at Mercy here in Spfld MA.
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Tinkerbell
I'm so sorry that I scared you. I feel certain mine was a rare case. Pls. take Binney's advice on this.
She is always right!
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Tinkerbell - just wondering how you are doing. Did you decide to keep your appt this week or postpone?
Frankie
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Hi Frankie
I called my mo and she said i should keep the appt. Im really worried but im going to let the tech know not to squeeze to hard. Im so not trusting of drs latley so im really having second thoughts. The swelling has gone down a lot finally. Im praying for the best funny but I'm more worried about lymphedema than cancer right now. That's crazy when the thought of cancer comes up then i have a full blown anxiety attach. Thanks Frankie for thinking of me it really made me feel good. I go on Thursday for my mammogram fingers crossed.
Purple its ok i didn't need much to get scared i was already in a panic. I didn't even post because i was embarrassed of how pathetic i was acting. I'm a little more calm now. Thanks at least I'll take precausions and pray for the best. My mo doesnt think i should postpone. i will post on the other thread.
Ginger great news....yay!!!!
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Hello ladies,
I haven't really thought about "IT" much for the last year or two. I go in, get my mammo, wait about 10 minutes, get called back for 3-D and go home, come back 6 months later for an ultra sound, come back 6 months later and start all over again. I have gotten pretty good and rolling with it but my next ultra sound is coming up this month on my birthday and that has me feeling a bit off for some reason.
I am trying not to worry, just needed to vent and get it out.
Hope everyone is feeling healthy and beautiful!
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Hi kelly
I understand how you feel. Sometimes our mind will go wild on us. Just think its your birthday so everything will be ok. Good luck..
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momoschki - thanks very much for your replies. You put my feelings and experiences about talking to others into words. I can never quite find the words to explain things and you do it beautifully. It makes me feel less pathetic to know someone else feels the same and can articulate it. My next appt is Monday. "Totally insane" and intentionally isolated describes me at the moment! Isolating is comforting. Marathon Netflix watching going on.
Tinkerbell - let us know how you make out today
Kelly - best wishes for getting through your month of waiting and wondering
Welcome to other new friends who have joined this thread. How are you all doing?
Frankie
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Frankie, thanks for your kind words. After 6 years of this, I've pretty much come to the conclusion that this high risk classification is something we struggle with largely alone. I try to tell myself that it is what it is-- some of us are better at compartmentalizing the worry than others. Sadly, I am not one of those for whom this skill was is a strong point. I also try to remind myself that everyone is high risk for something (especially now that I see the 60 year mark close to the horizon). We have the dubious pleasure of being reminded of this risk twice a year. Our dx makes us feel especially (and understandably) vulnerable, whichis tough to carry around.
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Thank you, Purple, for the great info!!
I'm leaving for my 3D imaging appt, I've been so busy up until today that I haven't had time to really think about it much, which has been a blessing, I think. I have a bad history with the military misreading things, losing samples from biopsies, etc so this is my first time in a modern healthcare system, so excited/slightly terrified. More soon ladies, hugs to all of you today!!
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Crossing fingers and all
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Thank you
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Good luck dessertstorm. I will be getting my mammogram soon to. waiting to be called. Fingers crossed.
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