Member of the "6 Month Watchful Waiting Club", Unite!
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Benign is always great news!!!! I hope I get to the point where I don't worry about mammos ahead of time. Good luck to you on Thursday.
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awb,
Remarkable (and encouraging) that you actually forgot about your upcoming mammo. I've got one coming up the beginning of November and I am already anxious. Very hard not to envision all types of "what if"scenarios.
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Hi Ladies ... just joined the group -I had my first core biopsy 25 years ago (benign) - and have been "on again/off again" on the 6 month watch complete with mammos since then. I have very dense breast tissue and both micro and macro calcifications. Last spring there was a change in the microcalcifications that put me back on the 6 month mammo routine. I changed drs and hospitals and received an immediate needle biopsy. I'm now told I have atypical ductal and atypical lobal hyperplasia and am scheduled to have a core biopsy in 2 weeks. My surgeon is telling me that if the biopsy is benign, they will likely want to put me on tamoxifen given the liklihood I'll develop cancer - and then put me back on the mammo routine. Not sure what to think at this point. I've had so many mammos over the last 25 years, I'm concerned I'm just adding to the problem. Anyone have a similar experience??
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I was given the option of tamoxifen but I have chosen not to take it at this point in time.
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jcat,
I was diagnosed with LCIS 9 years ago at age 46 (a step further along the bc spectrum and double the risk of ADH /ALH); my risk is further elevated by family history of bc (mom had ILC). I started mammos at 34 due to my mom's history, so I was already being watched closely. I chose high risk surviellance and preventative meds (tok tamoxifen for 5 years, now take evista); not a choice for everyone, but works for me. Just got another clear mammo on Thursday! It gives me comfort to know I am watched so closely.
anne
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Hi ladies! I remember several of you from the last round of check ups, here we go again. Anne, what is evista, I've never heard of it. Is is a substitute for tamoxifen or a follow up booster kind of drug? Thanks!
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carp----Evista is actually an osteoporosis medication, that is now used also to prevent invasive bc. It is a SERM, like tamoxifen, but is for use only post menopausally. It could be an option for someone who could not tolerate tamoxifen, or for someone like myself, who took tamox for the full 5 years and wants additional prevention for long term. It is not quite as effective as tamox, but it also has less SEs.
anne
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Hi everyone!
I just found this post and am a member of the 6 month club after being in the yearly screening club for many years. I had a needle biopsy 3 x in my 20's and early 30's for fibroids on the same breast that is of conern right now and all was benign.
Then this July, I got a call that they wanted to do a diagnostic after seeing my last films due to clustered micro-calcs. I had a bad feeing but they said, come back in 6 months, looks like nothing. It was classified a Birads 3.
Since I have a lot of risk factors such as getting my period at age 10, cervical cancer (in my 20's I had carcinoma insitu) family history of ovarian cancer (grandmother died at 58 of this) and a whole host of other types of cancer on my dad's side, obesity (I lost over 150 lbs and still am overweight by 20 lbs or so) smoking, night sweats even though I am through menopause and have not had any hot flashes in several years, itching on the same breast that is of concern and feeling very tired lately, I took it upon MYSELF to call a BS and I see her tomorrow. She is at Smilow Cancer Center at Yale and it took almost two months to get in but worth the wait as she is an expert in DCIS.
Some of my family members and a friend think I should just wait for the 6 month mammo and not worry so much. I can't help it! I am a very laid back person normally but this time I am worried. If it turns out to be nothing, no harm, no foul. But, if it IS something, I hope they catch it early!
I am glad I found this thread. I pray that all of you go back to yearly mammos schedules and that all is well. But, I am not sure if I could be happy with that even now that they found this "area of concern" especially since a dear friend died of this horrible disease at the age of 36. I will never forget what she went through. It was horrible. She was diagnosed with Stage 2 initially but it ended up coming back in her brain and bones. That was a long time ago though (1987) and I know they have made a lot of strides since then.
I am worried about tomorrow but happy that a BS will finally take a look at everything!
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I am also a member of the '6 Month Watchful Waiting Club'. I was diagnosed the LCIS & ADH in May of this year, after an excisional biopsy (which I requested) as opposed to the less invasive biopsies. My yearly mammo sono picked up the clustered calcifications, apparently so typical of this diagnosis. In the middle of all this mess, I had to move to FL from NYC, leaving my family behind, (kids and grandkids). Seven months before this I was diagnosed with COPD (from years of prior smoking and 25 years of chronic sinusitis and bronchitis). I was supposed to go for a mammo/sono at the end of October which would have been 5 months out from the surgery, but postponed it until December which will be 7 months out from the surgery. I did this at the urging of my daughter. I was hit pretty hard with two serious medical issues and my mental state is to say the least extremely fragile.
I found an oncologist here in Florida (who accepts my insurance). This is a big problem when you are not on medicare, finding doctors who will accept you insurance. He will not put me on tamoxifen, evista, or any of the other prevention drugs because of the COPD. Even though I am very concerned, I was not going to take any of these drugs. So I'm just waiting like everyone else. I remember my BS asking me if I still had my uterus! And two oncs in NY were very willing to put me on these drugs, even with my COPD, and risk me getting pulmonary fibrosis, along with the other pulmonary issues these drugs can cause.
Just goes to show you how many different opinions there are about how to treat this. I guess there are thing we just have no control over. One oncologist said breast cancer, and two said not breast cancer. I don't think they really know enough about LCIS and it usually appears in younger women, not someone my age, but then who knows how long I've really had this. It just happened to show up this year on the mammo with the microcalc clusters.
Thanks for listening everyone.
Rosy
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Anne, thanks so much for letting me know about Evista! Good to know. I am 47 and not sure if menopause is starting yet since I has an emergency hyster a few years ago, and rolled the dice by keeping my ovaries. We'll see...
Hi Rosy, and welcome to our "world of ambiguity!" Most of us are BIRADS 3, probably benign, and sent away for another 6 months. Lots of shoulder shrugging, "we think", "probably", "probably not" - those kinds of words. Density, ADH, lumps, bumps, occasional biopsies, discharge - the kind of stuff that indicates we have breast disease, but not cancer, and hopefully it won't go there, but no one can tell us for sure. So we go to our appointments, hold our breath, and get the "go away and come back soon" letter. Could be much, much worse, so not complaining, it's just the world we live in that others don't understand, I guess!
I am sorry that you find yourself out here, but what a great group of ladies. Check out the LCIS thread, as well!
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Hi Rosy, good to have you but sorry you need to join this group.
Anne, great news on your all clear! I too had an all clear mammogram in July and got put on a yearly check-up. My BS found the lump I was scared about and aspirated fluid from it, and it was just a cyst. Whew! She did say she wanted me to alternate her visit with my gyno visit every 6 months, that was someone was checking me every 6, which is peace of mind I guess.
I too was offered Tamoxifen but chose not to take it at the time because I was having knee surgery, and I have endometriosis which I control with birth control pills and if I took the Tamox I would have to go off those.
Good luck to April with your appointment tomorrow and everyone else on here who had tests upcoming.
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April, how did your appointment go? I hope all is well. I am sorry that your joining our 6 month club - maybe someday we can all go back to the year plan. Although that makes me a little nervous , I sort of like the close look, the thorough exam, etc. well I was just passing through to check in everyone , now off to sleep!
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Thanks for thinking of me Carpe Diem!
After a thorough look at all of my films and a manual breast exam by the BS and a resident, she feels that the 6 month wait and see was the way to go and the radiologist was correct. She felt that although I have numerous risk factors and she did feel thickening in the "area of concern" in comparison to my other breast, that waiting until January and having another diagnostic mammo (in 3-D as they have the latest technology at the BC Center) was the way to go.
Since I did not have a lump, but had clustered micro-calcs, there is not truly an alarming enough number to biopsy (there were 4 of them and they worry when more than 5 are present) but that they DO want to watch them very closely and if a lump develops, they want me to call immediately since there is some tenderness and thickening that was evident when she did the manual (and very thorough!) exam.
So, the 6 month mark is January from my initital mammo and I will see her that day right after the radiologists do my diagnostic mammogram. They will give me the results of that the same day, unlike my last radiologist who waited almost a month and then called me in for a second look! The first I heard about needing a diagnostic mammo was almost 4 weeks after my initial one...way too long if you ask me.
I feel much better after having met with this top notch breast surgeon who spent over an hour with me, going over my history and asking me a lot of questions. She answered every single question I had and even listened to me when I told her that many of the women here on BCO DID have pain in the affected breast prior to diagnosis because when she said "BC generally is not painful" I told her that I would be happy to send her a thread where many many women reported having some pain prior to diagnosis. She seemed GENUINELY interested in hearing that information and said that most of her patients did not complain of pain prior to diagnosis. The fact that this interested her told me that she was genuinely concerned about my specific case because I am having some pain in the area that showed the micro-calcs although it is sporadic.
So, in short, I am glad that I went, even though she feels that waiting the 6 months before doing anything more is the right course of action. Just being at a Nationally ranked BC center is enough to make me feel better than just going to a small local radiologists office that does everything, including knees and everything in between. This place just does BOOBS...LOL.
So I am still in the 6 month club and if she does not like what she sees in January, she said she will likely order an MRI. I am happy she is on my team.
Thanks again for caring!
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Hello all! Can't say I'm ecstatic to join you guys but I'm happy to have your support. I posted this on another link the other day desperately seeking some guidance and carpediem1965 guided me here. My brief story:
Hello everyone - I'm new to this forum, and this website. I got my test results today and I must say I'm no calmer than I was monday when I went to the doc. I don't have my follow up appointment until the 17th and frankly half of what the results say are chineese to me.
So the results say that my left breast presents with 2 lesions ( cysts ) of about 2cm clasified BI-RADS 3 but I also have ample armpit adenomegalies and fribroadenomas on both breasts. I'm only 34 years old and kind of concerned about the whole picture. This is radiologist's report. The doctor hasn't read it or seen the scans. How worried should I really be? Has anyone had a similar experience? This whole "probably benign" thing has me on edge. I'd rather know or not know.
My big question to all of you out there - ( and pardon my BC ignorance ) but aren't I too young yet for a BI-RADS 3 or to even be concerned with all of this?
Thanks!
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pispirita, I had my first lump at 16. I don't think they had BIRADs ratings in those days but if they did, I'd have had a BIRADs 3 or BIRADs 4. So no, you are not too young for a BIRADs 3.
The thing to understand is that BIRADs ratings don't necessarily go up over time. If you have a BIRADs 3 now and everything remains stable for the next 6 months or a year, then you might be back to a BIRADs 2. I'm never better than a BIRADs 2, which is "normal with a comment". I always have cysts or something so there's always a comment... that's why I'm never BIRADs 1. But I've beem BIRADs 4, then a benign biopsy and that puts me back to BIRADs 2. And I've had several BIRADs 3 where I've been put on the watch and wait program, and after the radiologist is satisfied that everything is stable, I'm back to BIRADs 2.
Is your appointment on the 17th with a breast specialist, i.e. a breast surgeon? If not, given that you have "busy" breasts, just like me (I've had fibroadenomas, more cysts than I can remember, a fatty deposit that had to be biospied, benign calcifications), I'd recommend that you see a breast specialist. With so much going on in your breasts, it doesn't mean that you will develop breast cancer, but it means that it may be more difficult to distinguish between all the benign stuff and something serious, if something serious were to develop. So it would be a good idea to line yourself up with a breast specialist who you can see whenever there is an issue. I saw a breast specialist for many years before I finally really needed him - when I was diagnosed with BC. Fortunately because I was being monitored so closely, my BC was caught at a very early stage.
By the way, don't worry about the words "probably benign". With BIRADs 3, it means that there's a 98% chance that it's benign. Since there is something there in your breast and on the films, and since it hasn't been biopsied or monitored for stability, even if they are virtually certain that it's benign, at this point they have to use a word like "probably" because without a biopsy or confirmed stability, they can't know for sure that it's benign with 100% certainty. Still, it would be a good idea to have a breast specialist look at the films and confirm that he/she too agrees that it's a BIRADs 3 and "probably benign".
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@Beesie - Where do I find a Breast Specialist? Is a Breast surgeon the same thing as a plastic surgeon? My appt on the 17th is with my OB-Gyn. I went to see her for a routine checkup and a pap smear and because my husband found lumps on my right breast. These 2 cysts are on my left. I had no idea they were there. She sent me in for the sonogram I think out of general concern but not because she was overly worried.
I'm mainly worried about a misdiagnosis. If it is a 4 lesion I'll be wasting time. If it is 2 then I'm loosing sleep when I shoudldn't!!!
I suppose It's more due to the fact this is my first experience with all of this ( I don't know anyone who has gone through this ) and I don't trust anyone just yet? I've been pouring through this site trying to make sense of things. Thanks so much for sharing!!!
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Hello All,
I am new to this board and needing support. I am part of the "watchful waiting" club. I was dx'd with LCIS/ADH/ALH about 3 years ago and had a lumpectomy. I have had only one clear mammo since (the first one after surgery), which means that I have had a suspicious area that had to be bx'd (FN)every six months--all B9 thankfully. My last mammo/ultrasound/MRI showed new areas of ADH (I had a biopsy with one of those vacuum needles during an ultrasound). My dr and I decided not to have another lumpectomy to see if ADH masked anything else, but my 6 month appt is coming up (in 10 days), and I am a basket case. I desperately need to have some support, some reassurance that I won't be getting my mammo and learning that I have cancer. I realize that you can't guarantee that, but I need some of you to tell me your experiences, and tell me it's going to be ok.
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pispirita, a plastic surgeon is not the same as a breast surgeon or breast specialist. A breast surgeon is a general surgeon who specializes in breast conditions. They may call themselves a breast surgeon or a breast specialist although some just use the term general surgeon. What's important is to find a surgeon whose speciality is breast surgery (and not plastic surgery on breasts). I think it's great that your Ob-Gyn has sent you for the tests to look into this, and your Ob-Gyn might be quite experienced in this area, but as a general rule an Ob-Gyn's expertise is a little lower down in the body, not the breasts. So my suggestion is that you explain to the Ob-Gyn your concern about misdiagnosis - it's a very legitimate concern when you are being told to 'watch and wait'. With a BIRADs 3, it's always a good idea to get a second opinion from a breast specialist, just to make sure that another expert (other than the original pathologist) looking at the report and the films doesn't assess it differently and rate it a BIRADs 4 instead. The BIRADs ratings are subjective, after all. I'm not suggesting that your rating will change - usually the 2nd opinion does confirm the original finding - but you will be reassured if the breast specialist agrees that this is a BIRADs 3 (or even a 2) and not a 4. Hopefully your Ob-Gyn can recommend someone or set up an appointment for you.
Charlotte-Jane, as I'm sure you know, most cases of LCIS/ADH/ALH don't develop into breast cancer. You have 3 years of history of your's not changing into anything more serious, so hopefully this 6-month check shows no more changes and nothing more than what it showed last time. I'm sure that there will be others who come by who can share their experiences of years of successful monitoring with no finding of breast cancer. Good luck with your mammo. Here's hoping for an "all clear" with no changes and no need for another biopsy.
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Charlotte-Jane, spend these next 10 days productively and don't let fear take over!! Stress is so bad for our bodies - I like to think that if something is wrong, I may be "feeding the beast"! The adrenaline rushes, blood pressure spikes, increased pulse, probably not eating or sleeping well - fight all of that and keep things as normal as possible. This is your "new normal" - unless you decide to take a pre-emptive strike and have prophylactic mastectomy, you will be going through this for a long time to come, so pace yourself for the marathon, don't run the constant sprint!!
So deep breaths. It is what it is, nothing you can do about it right now. So get a list of projects together and dig in - cleaning closets, yard sale, planting fall flowers, calling and seeing people you've been meaning to, a quick trip, complete a big project at work, make and freeze some dinners for later, whatever it takes to productively wait out these 10 days. In addition to making time go by quickly and staying in charge of my life and emotions, I also do this kind of "clean up" before my appointment in case the rug is pulled out from under me, then my stuff is in order!
I hope this helps, I've gone through this for so long that it is just part of my life now and no longer an "event" to fear or anticipate. I also want to keep control of my life and drive the train instead of it chasing me down while I run ahead on the tracks. Sending you a very understanding hug!!!
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Beesie, thank you! I have read some of your posts, and you are an amazingly helpful person. Thank you for taking the time to respond to my post. Here's hoping that the mammo gives me another all-clear!
carpediem, thank you! You are right about keeping busy, and I try to do that. I am so good at not thinking about my breasts for months, and then mammo time comes along, and bam! But, I am working out, and that helps with the stress, and I do try to keep my mind from going to scary places. The worst times for me are when I go to bed, and I am not busy! I guess things will get better once the mammo is over.
Thank you for taking the time to calm me down. I sending you cyber hugs.
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Beesie - thanks for the great advice! I'm going to keep my appointment on the 17th but am looking into other docs and researching and trying to get appointments. This was my first test ever and it was a sonogram - I understand BI-RADS ratings are the same for sonograms and mammograms right? So i'll just take my films to the other doc and see what he / she says. And thanks for everything!
Charlotte-Jane - sending you cyber hugs too! Keep us posted!
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I use a natural product called Midnight, can buy it at CVS or amazon. It has melatonin, lavender and chamomile- the tablet dissolves in your mouth and tastes good. I only take a half of a tablet and I'm sleepy in about 20 minutes, dream, don't wake up groggy at all. It helps when I am stressed and over thinking things!! Hubby is a military pilot who has been deployed lots, once we didnt see him for 10 months, and I am recently retired myself, so lots of stress to go around even without health issues and teenagers!
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Pispirita, I totally understand your concern. I made sure to follow up with my Birads 3 reading with a breast surgeon for piece of mind and she concurred with the radiologist. It bears watching and I will have a follow up at 6 months, but right now, all looks benign to her eyes and all she does is breasts as she is a specialist/surgeon at a BC center. Good luck to you as you sort this out. I know how scary it was/is for me. Praying all is well for you.
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Mammo & U/S are 8 days away, and I wish I could get rid of the big knot of stress in my stomach. It would be so amazing if I were to go in next week, and after my mammo, my dr would say, "all good. See you in 6 months." I am hanging on to that thought and feeling as much as I can. I am keeping busy working out, spending time with friends and family, and taking a xanax before I go to bed! I am looking forward to the next 8 days passing as quickly as possible.
Thanks for listening everyone. I know you understand.
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Gee, we have a club? I'm actually in the three-month waiting club; I turn 50 this Friday, birads 3, 8mm solid mass with indeterminate margins via ultrasound. Sometimes I have swollen axillary lymph nodes, sometimes theyr'e not swollen. The breast surgeon looked at my slides and asked me what I would like to do; if the slides don't look compelling, would I like to wait three months, re-evaluate, or go ahead and biopsy. I said "wait," so here I am. Husband is pushing to go ahead and biopsy, but I'm going to wait and see if things change in the next few weeks.
I"m actually really calm about waiting; maybe it's denial or compartmentalization, but I am fine waiting three months for the next ultrasound; this next one will be a doppler ultrasound with a breast radiologist. I"m excited about that...wait a minute, why am I getting excited about more tests? I guess that's the new normal, so I"m gonna take it in stride. Right now, I'm really enjoying not having cancer...
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I have been a reluctant member of this club for the past year and a half or so, with a dx of ADH. Maybe someone here can answer a question I know I must have asked by BS at some point, but gave managed to forget the answer. After a certain amount of time has passed, and assuming all my scans are clean, is the protocol to go back to being seen once a year? And if this is so, why would that be, since my understanding is that the risk actually goes up every subsequent year, not down? Is this correct?
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Howdy everyone, I had my 6 month MRI last month...it was my first. Unfortunately I had an allergic reaction to the contrast...my face, neck and top of chest area went bright red! It looked really strange. The MRI tech first told me that it was because the machine had overheated my body and gave me icepacks to put on the back of my neck. I sat there for 40 minutes...(while my 25 year old daugher who is also recieving screening due to my BRCA2 status was in the machine) and the red did not go away. The tech decided that she could not let me leave looking like that and called a doctor down to have a look. He immediately said, "that is an allergic reaction". So...jumping to the end of the story, no more breast MRI's for me. Sucks as I believe that this is the best test for diagnosing early cancer in BRCA1 and 2 women. I already had invasive tubular carcinoma 1.5 years ago in my left breast and have been concerned about the other breast since. So now I will be having a diagnostic ultrasound alternating with Mammograms every 6 months due to my BRCA2 status.
My recent MRI report says that I have "reactive appearing lymph nodes within both axillae and both infraclavicular regions. There is no evidence of internal mammary lymphadenopathy. There is moderate background enhancement." I also had a biopsy on a spot on the right breast last April...and it was determined to be a reactive lymph node. My question, why in the heck would I have so many reactive lymph nodes for such a long period of time. I also have had a large swollen lymph node just under my jaw on the left side for the last 4 years or so...a cyst in my thyroid gland, right side (that they don't seem concerned about). I also had a hysterectomy with everything removed last May...and am now packing on the pounds. Sucks to be me at the moment lol...but it's great to be alive! I guess if I was losing weight I would have even more reason to be worried....
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isee, could you have a breast thermogram if you can't have the MRI? I'm thinking about asking my ONC about the thermogram, I read that they were also good for detection.
I found the MRI very difficult because I have COPD and it's hard for me to breath, especially lying on my stomach. I almost squeezed that little button they give you if you want them to stop. What did they give you for the allergic reaction you had?
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Hi Rosy, they didn't give me anything for the reaction. They just kept asking if I was having any trouble breathing...but I was not. I felt totally fine...other then being bright red. They told me that if I had the Gadolinium/Gadovist contrast again it could be fatal. I have never heard of a breast thermogram...but, here in Canada we don't really get a choice...they tell us what they are going to do, and for me now, they said they will do the diagnostic ultrasound and mammogram alternating every 6 months.
I bet the MRI was difficult for you with COPD...it's such a long test!
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I'm not quite sure either. My oncologist also mentioned the increasing risk over time, yet at the 5 year mark decreased seeing me to once a year instead of every 6 months. I think it's becuase they generally feel the highest risk of developing invasive bc occurs within the first 5 years, and especially during the first 2 years after diagnosis. (which is ironic with my diagnosis of LCIS, as they say invasive bc is usually seen after 10-15 years or more after initial diagnosis.) I still continue my high risk surveillance of alternating mammos and MRIs and breast exams, 9 years out.
anne
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