Member of the "6 Month Watchful Waiting Club", Unite!

melissadallas

Will do.:)



Glad things are looking o.k. but what a pain about the duct thing.

april485

Aw Sheesh Carpe. It is like the car thing with your boobs. You know, when it is making a noise and you tell your husband or the car mechanic and they take it out and the thing won't make the noise no matter what. The moment YOU get behind the wheel, there is the noise again! So sorry you got poked, prodded and otherwise man handled and they still don't know what the discharge is. Praying you get some answers sweetie.

Gonna go ice down the boobie. Sore from that lumpectomy despite the pain meds! Hugs!!

sarahsmom

Thanks, Melissa :-) April, I know, right?! Bet I wake up tomorrow to find the spontaneous thing happened over night. Sigh. Well all we can do is keep moving forward and stay on top of this stuff. I hope you feel better with each passing day!

awb

carpe--sorry you had to go thru all that. But happy to hear that it is most likely just benign cysts and fiboradenomas. Hope everything turns out well.  Have you ever tried evening primrose oil? It is supposed to be good for fibrocystic breast disease.

anne

sarahsmom

Hi Anne! I did try it a while back and it worked well for my cysts (plus no caffeine and vitamin e) but you know what, I'll give it a try again and see. Nothing to lose! Thanks for the reminder :-)

JMMS

Hi, this is my first time ever posting on a board - about anything. I was glad to see "6 month club" because I have been in that club for many, many years. I am 48 and started getting mammograms at 25 and have had several biopsies. The first one surgical 14 years ago when I was pregnant with my daughter. I was awake during that surgery and they had "16 weeks pregnant" written on the white board in the OR. I have very dense lumpy breasts, have a mother who was diagnosed at 40 and died at 53, a grandmother who was diagnosed at 80, and a cousin diagnosed at 42. I have had 6 month MRI's, and twice have been brought in for MRI guided surgical biopsy, which in both cases surgery was aborted because they could not find the "problem area" on MRI again for biopsy. One year ago, I had a wire loc surgical biopsy on some calcifications on the right side. I went back for a mammogram check up last week and was told it looked like the surgeon missed the calcifications last year and now the calcification are "lining up" and there is a second area of calcifications 2-3cm from the other area. Now I am scheduled again for surgery this Tuesday to put in two more wire locs and to surgically remove the areas. I am not sure what to think have been on this roller coaster for so long. I know I also have to put everything in perspective, but am right now working hard on trying to find a new job, (newly hired boss, not what I originally signed up for) and feel like this is getting in the way. (I don't even want to tell current boss I will be out sick day of biopsy because I know it will be a mark against me.) So, am guessing you all have been through the wire loc biopsies before and there is some comfort in knowing I am not alone. Thanks for listening! If there is anything I should ask the surgeon or I need to know, I appreciate any advice....

sarahsmom

Welcome JMMS! Wow, you've really been through the wringer. I am 47 and started this madness 7 years ago. Have you considered a preemptive strike in the form if mastectomy? I feel like my breasts were an asset and now they are this huge liability. Although I have ADH, I feel like I am waiting for a cancer diagnosis to take that plunge but then it will be too late? I just think this breast issues impact our mental health and impact out quality of life. More so than other chronic conditions I think, since cancer could pop up at any time? Anyhow, glad you are here with us, helps to know people who understand this madness!!

melissadallas

Hi JMMS and welcome. I'm just starting on my six-month monitoring, but I can tell you the wire localization wasn't bad. Really mostly like a long drawn out mammogram more than anything. I think I was more uncomfortable from holding my head out of the way at an odd angle than from the wire placement. They numb you up well & I was not really even aware when they put it in. Mine was even done at a different location than the surgical center. They taped it down & sent me on my way. I think the doctors will be more likely to get the correct place on you with one.

JMMS

Hi, thanks for the notes, I have for years thought about pre-emptive mastectomies, but have felt like the recovery, time, etc. would be a burden, so I guess I am waiting for that diagnosis to take that plunge.... I had the wire loc last year (when they missed the spot), its a very tough area to get to on outer right edge and the other behind the breast on the chest wall. So, they will put in two wires this time to try to get to it. (Last year trying to get to it, no exaggeration, there were over 25 mammogram photos taken.). Talk about the "prevention causing the disease"- So will see how this goes with the surgery on Tuesday. Glad that you all understand the roller coaster, most of my friends just don't get it.. Good to know you all are out there.

april485

Wow! My wire loc was not that bad at all. Very little discomfort and the films showed it to be right on the spot where they put the marker in during the core biopsy. I had two wires inserted. I had my lumpectomy yesterday. Now waiting (isn't that our middle name around here - the waiting bunch?) for the path report before beginning tx. I am praying hard for those all important "clean margins" and for no IDC found hiding in that DCIS. Ugh...waiting, waiting, WAITING! Since July and the original Birads 3, I have been doing nothing but WAITING it seems.

This thread is so important for that aspect of this stuff. I am grateful for all of my "waiting" friends since we wait together a lot.

Praying hard for those of you waiting for diagnostics that you get your answers soon and that you hear that lovely word - Benign!

I was not so lucky, but still, they caught it early I hope! Then after path report is in, I wait again..for my tx's to begin. Likely will be rads and AI's which is the standard tx protocol for DCIS.

I may seek a 2nd opinion from Dr. Lagios regarding tx options since I don't want to be over treated or under treated either. This stuff is so complex and scary!

Hugs to all who are "waiting!"

JMMS

Will be thinking about you and hoping for the best outcome, while you wait....

LLH

JMMS, I am new here but I here your pain with the wire locks - I think that was more painful than the surgical biopsy. Not looking forward to going thru all of this again. I am trying to stay positive but I am really having a hard time

Here's a little of where I am. My mom had bilateral mastectomies 25 years apart, both were insitu but I don't know ductital or lobial. The time of her 2nd diagnosis came about 2 weeks before my abnormal mammogram. Dec 2008. So I spent new years recovering from the surgical biopsy that came back as atypical hyperplasia with clear borders. After that I was on a 6month schedule for mam's. I was doing well and was back to the yearly routine, until this last month. I was called back for a 2nd round of films. The tech had to sets of screens and I could see the new pics. I am no radiologist but I do remember the 1st time and the spot that cause the concern. This time there are 2 one near the original site and the 2nd at it's polar opposite side of the breast. Both look about the same size but I can't be sure of their size compared to what was taken out last time =o(

All I heard was come back in 6 months and have them retaken. I wasn't good with that and my family history and made an apt with my family practioner. I go this Tuesday. If this was you, what question would ask now?  what do I need to know to make an informed decision moving forward?

I would like to have brac testing done but my doc refused in the past. I am asking again and I also would like to have a MRI.

Even though I haven't been writing I have been reading and trying to absorb as much as possible.

thanks

Irishwfl

I just discovered this site about a week ago and this 'club' a few minutes ago. I started yearly mammograms when I was 35 and I have been doing the six month check for two years.  The first time was very stressful.  I lost my Mom to breast cancer when she was 53, so I have always been very concerned about it.  Up until the last visit visit I was told the calcifications and cysts were probably benign (the first time they said that I burst into tears, I wanted definitely benign).  My last visit, almost a month ago was different.  They recommended a biopsy, I had a bit of a melt down.  The biopsy was last week, the results - ADH and ALH.  They are doing the breast needle localization/open excision biopsy/lumpectomy next week. 

I always thought I was high risk due to family history and dense breast.  Guess I was right.

sarahsmom

Hi Irish, so sorry you are here with us and having issues. Glad they finally diagnosed your issues though so you can take charge! I'd rather be on the offensive with this stuff, as much as I'd like to stick my head in the ground and hide.  I am so sorry that you lost your mom and now are facing this, you have a special angel guiding you every step of the way :-)  keep listening to your "inner voice" - sending you a hug! Keep us posted on your surgery, I hope it goes well. 

peanutsgal

Irishwfl,



Welcome and sorry you had to join us. You will find that these boards and the wonderful ladies on them are a wonderful source of not just knowledge but encouragement. It can be very nerve racking to have to endure the 6 month roller coaster, but lean on these ladies and ask away when you have questions. It's not the club any of us wanted to be in, yet here we are and we have each other! I will be thinking of and praying for you next week.

JMMS

Hi all, I last posted on 2/23, and dont think i am in the 6 month waiting club anymore, unfortunately. I had the surgical biopsy (actually a lumpendectomy) on 2/26. Results came several days later and it is DCIS (2 grade) 6 mm with clear margins, estrogen positive. I always knew I was a time bomb, with mother dying of BC at 53 after being diagnosed at 40 and other relatives too.



So now treatment decisions need to be made. I always knew I would have a DM - it was just a matter of when. Now, DCIS diagnosis is my call to action, but I am in the process of starting a new job. Timing for this is not good. I need to decide on treatment plan, and want to hold off on DM until I can get settled in my new job, likely at the end of the year. I am also afraid of tamoxifen and all the side effects - have strokes in my family. Dr says I can wait on the DM, and that I should not have radiation as that messes up the reconstruction. I am really at a loss on what to do next, given all that is going on.



Any thoughts or recommendations you all have are welcome, as I figure out what to do next.

bean

JMMS ~ I'm sorry to hear you are no longer in our club . . .      The good news is that you have found it early and things are still on the good side for you.

I recommend you go on the DCIS forum. There are many many ladies that can answer the many questions that I'm sure you have. I, myself, am still a member of the 6 month waiting club, but my sister was dx 9 years ago with stage IV and has recently discovered more mets. Her treatment will be ongoing for the rest of her life. I have learned sooooooooo much from the women that are in the same situation as she. I know they will be able to help you. Check out the forum: http://community.breastcancer.org/forum/68

Good luck to you, and hugs!

sarahsmom

JMMS, nothing to add other than a hug, I am so sorry about your diagnosis. I echo Bean's thoughts here- at least this is early and you have some control over which decisions and when to execute. Sending you strength for the path ahead!

apriltears

Hi!  I'd like to post as I am now a 6 month watch and wait"er".  Four months ago, I would never have imagined I'd be searching breast cancer forums, little lone, possibly be part of one.  

I feel like a fraud posting here, as I believe my report was possibly good news.  When I read the stories above, I feel like I really don't belong.  At the same time, I'm terrified that I'm headed down a path that in a year or better the doctors are going to be kicking themselves for not doing something more "back then".  I appreciate hindsight is 20-20, but that doesn't make me feel better in the present.

I found a lump in my left breast at 3 o'clock in December.  After just a screening mammo and a (questionable) us, the radiologist's report indicated I have a swollen lymph node.  He also said it looked benign, but recommeded a follow up in 6 months. 

I neither know what is causing the swelling, nor if it is normal for a lymph node to be swollen for this long.  I feel a little brushed off.  I'd really like to know what's causing the swelling. 

Before finding the lump, I started having severe itching and pain in that breast, that's not to mention the night sweats.  I'm only 30, but if this is anything like menopause, I am not looking forward to it!  My doctor fully believes the radiologist's report, and not my symptoms. I had no other infections or illness before finding the lump.

These last 2 months seem unreal! I feel like my immune system has taken a sabbatical from my body.  Since I found the lump, I've had 2 colds, a sinus infection that antibiolics didn't help, a boil that ended up in cellulitis and needed antibiotics, and now a uti of which I just got antibiolics last night (which all these antibiotics have of course led to multiple yeast infections).  I haven't had antibiotics since 2009 and 2004 before that.  I'm not usually a sick person; I hardly ever get sick.  I keep wondering, if my body is fighting something else; therefore, these infections are able take hold.

So, 6 months, I wait.

april485

(((((JMMS))))) So sorry about your diagnosis. With the size of your lesion being 6mm, you can also consider lumpectomy/rads instead of MX if that would make a difference with your new job. Of course, it is all in what your comfort level is for treatment. I hope that you can relax a bit now that you know what you are dealing with. Whatever comes from now on, you can take your time to decide on your trmt as DCIS is not going anywhere quickly.

Apriltears, have you considered getting a second opinion on your swollen node? I am thinking that is what I would do. Hugs as I know how maddening it is when no one listens to your concerns. It is likely some type of systemic infection causing it rather than BC, but for your peace of mind, maybe consult a breast surgeon for another opinion. HUGS!

sarahsmom

hi Apriltears, you totally belong here! We all understand!  i wonder if your immune system is out of whack because of the extra stress brought on from you finding the lump and the waiting/watching thing? Remember to eat well, sleep, exercise, etc so you can keep that stress under control.  It will def cause blood pressure increases, adrenaline rushes, increased heart rate, etc and usually when we're under stress we're neglected ourselves, at a time when we need to take better care. Sending you an understanding hug, I totally get where you're coming from with this breast issue!!

melissadallas

Carpe, how did the thyroid thing go?

sarahsmom

Hi Melissa, thanks for asking!! I went in for my CT, etc yesterday. They had a bad time getting the IV connected, multiple sticks in both arms by multiple people. they finally figured it out. One nurse told me I was dehydrated (duh - can't eat or dinrk 4 hours before the event which was at 10 - did they think I would drink water all night) so I said - how do you start IVs on severely dehyrated people then? Hah. Don't blame the patient because you're all having problems getting it to work. I had some great veins. Anyhow, did the CT then the thyroid ultrasound, which was painful only because of them shoving that wand into my adam's apple, throat, etc. I tried to peek at the screen - she was measuring something, I can tell after years of breast issues. I'll know next Wed for sure, so until then, living like there is no tomorrow, because who really knows, right?!

I hope it's just a harmless nodule but wonder if there is a "fix" if it is bothering me so much with swallowing, clearing my throat, etc? Can they take it out or I wonder if it will it be another mystery (potential timebomb) that I need to live with.

melissadallas

I'm glad it went o.k., even if not comfortable. I would have fainted on them if they stuck me that many times.



Benign thyroid growths are incredibly common. One of the girls I work with had a big one out a couple of months ago. The little scar is already almost invisible, and she is African American and their skin tends to scarring more easily. She had little discomfort from the surgery. She is still a little hoarse, but she answers our phone and didn't rest her voice as much as she was supposed to.

apriltears

Thank you for hugs and understanding.  People say they understand what I'm feeling, but until you're on this side it's impossible.

sarahsmom

Thanks, Melissa! I wonder why some nodules bother people and others don't and they dont even knos they have one! In addition to hurting, my throat feels dry all of the time, even when I'm chewing gum or whatever. And I choke on pills, noodles, etc. i did notice that if i talk a lot during the day, it hurts worse at night. I will be interested to see how big this is, or maybe it's just in a weird place. "It is what it is" applies to my life once again!! Just hope I don't have 6 month breast check ups and 6 month thyroid check ups to juggle .



April, you are soooo right. I actually don't talk about my breast issues with family and friends anymore. After so many years of "stuff" I feel like the boy who cried wolf sometimes! Hubby tries to minimize everything and my mom goes off the deep end and adds me to prayer chains, calls all of her friends, etc. the ladies out here are the best because they understand and support. Stay with us :-)

apriltears

Carpediem, you're not alone.  I feel like I'm crying wolf too!  Even when it comes to the 3 infections in 2 months.  I just keep trying to tell myself, they did tests.  The tests don't lie.  For that very reason, I haven't told any of my husband's family. 

I've been trying to tell my parent's for over a month, but fate keeps stepping in and stopping me.  I'm going to attempt this weekend again,  because I don't want to back pedal and explain why I never told them.  I'm so sure everyone in my mom's life will know in less than 24 hours, that I have avoided saying anything until I actually had something to tell her.  Although I still really don't have much to say, she'll be REALLY mad that it's been 3 months since I found the lump.  My dad won't be mad, he'll just worry.  That's exactly what I don't want.  She'll say she won't tell anyone, but her whole work will know Monday, and then my husband's family will find out and be mad that I didn't tell them.  Sounds silly, but I feel guilty already.  But why should I?  It's my life; it's my health; it's my choice.

Regardless of my fears, I believe I should still tell my parents at least.  Does anyone have any advice about how to tell loved ones?  Especially when it feels like there's nothing to tell?

sarahsmom

OMG - do we have the same mom?!  :-) :-)  When I had my hysterectomy, mom told everyone and I started receiving "get well" cards from her friends, I mean geez, it's kind of private. Ugh!  I try to remember that she means well, but sometimes can be a bit of a drama queen. Once I started having migraines and eye pain and she told my brother it didn't sound good and I likely had a brain tumor. Did I mention mom is a nurse?! :-)

With some of my friends, it ends up being all about them - they start comparing their own stories (of course what they went through was much worse) and I end up consoling them when I am the one facing down something bad!

So it's hard telling family because you can control the information, but not how it's handled. So perhaps you could couch the discussion by saying it is really private and you'd prefer that no one outside of the immediate family knows you are having this medical issue. You don't need any support right now, but just wanted them to know out of courtesy and you'll let them know if it ever gets worse or you need surgery or care. End of discussion. That might work!

apriltears

DITTO!  My mom's a nurse too!!!  You'd think our moms would understand medical matters are private.

Thank you for your advice.  You've hit the mark.  If I let my mom's anger determine what and when I tell her things, I'm allowing her to take control of the situation.  This time is about what I need, not what she wants.  I'll make sure she knows how disappointed I'll be if she refuses to accept my request for privacy. 

I'm hopeful you'll get good news this week!  You're in my thoughts!  BIG HUGS!

peanutsgal

Apriltears and Carpe,



I guess I don't really belong in this club anymore since I had my BMX, but I don't really belong on the cancer forums either. I can so relate to what y'all are saying about wanting to keep things private. When I finally decided to have my surgery, I told only a select few people ie: son and dil, parents, in laws, sister, best friend and one other person. Threatened all of them within an inch of their lives. Christmas Eve my DIL is helping me in the kitchen and she proceeds to tell me that someone in the church was asking her about who my surgeon was, why was I having such drastic surgery, etc, etc. nosey, nosey! I just about lost it!!!!!!! Of course it's Christmas and I can't investigate who leaked the news. I just really did not want the entire church to know my life story and that my boobs are FAKE! (I do sign language in front of the church) finally found out who leaked, asked her to go to everyone she told and to tell them that I wanted to keep things private and to please not share with anyone else. Leak claimed that I never told her not to say anything! ARE YOU KIDDING ME??????? Anyway, I said all that to say this. Be direct in what you say and be firm. Have them repeat it back to you and look you in the eye and promise to honor your wishes. I used this approach with my MIL because she's the one that'll have you on every prayer list in a 50 mile radius! Worked with her, just wish I had been more direct with the leaker!

Hope you don't mind me dropping in occasionally!