Member of the "6 Month Watchful Waiting Club", Unite!
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Well I am back. I got a call from the specialist that I was supposed to see on friday. She had a scheduling conflict but wanted to set up a time to see me ( I am going tomorrow). I had made this appt because this was my second biopsy on the same spot and the first biopsy showed PASH. I decided to go into Boston to see someone who deals with benign breast issues. She told me that she and the pathologist had reviewed my films and believe it is best if I have "tissue removed". Please keep in mind that my local BS still has NOT contacted me with the result of my bipsy that was done 5/31. I happen to work for my primary care dr and the results were forwarded to our office. Obviously if I did not work where I do I would have made a phone call but at this point to be quite honest I do not feel confortable seeing him. My path report showed "dense stromal fibrosis and fibrocystic change.no tumor seen". The Dr. in Boston said that after reviewing the films and reports they feel that because of the ammount of density that is seen now compared to a year agoI should have some tissue removed. I will know a lot more when I see her tomorrow. I also made the appt partly because I did not want to become part of the 6 month wait and see group again. I find the wait just horrible and extremely stressful ( along with the fact that I have obsessive compulsive disorder does not help!). thanks for a place to vent!
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Michelle, part of my path report says the same. I have ADH and entered the club June16. I just met with an oncologist who is with MassGeneral but in Danvers. She was excellent and recommended a baseline MRI and mentioned Tamoxifen to me. She wants me to think about the risk vs. my cancer risk but didn't push either way. That said, I have an appointment with her in September so time to make my decision. Not sure if that is normal procedure for an Oncologist but it doesn't worry me either. The MRI has me slightly freaked out, but I think after the two biopsies that is probably normal.
My jaw dropped when you said you haven't heard from your BS. I am assuming she did the biopsy. I had to wait 10 days but was told with my BS that she likes to give results in person that was the reason for the wait. It was my post op appointment. My stereotactic results I had in 2 days with a call from the hospital. I am floored by your BS and would be so angry at this stage. Good luck with your appointment tomorrow.
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AMP614,
My local BS didnt do the biopsy himself the radiologist did it. But to be quite honest I did not like the way the first biopsy was handeled by him. I got a quick phone call after a week and that was that, and was told to make an appt for 6 months to do a f/up mammo. I am upset but I don't want to rock the boat to much because we use him on a regular basis, he really is good and we have never had any problems sending other pts to him. The dr. that I work for I could see was a little upset when I mentioned that I had not received a call but I am kind of looking at it like I am being taken care of and I was going to make an appt in Boston for a 2nd opinion anyway. But it is scary to think of all the others who have fallen through the "cracks" I am fortunate enough to have a little medical knowledge so I knew what to do. And my job is to book specialist appts and do insurance referrals so I knew who to go to.lol. I am looking forward to the appt tomorrow , I don't know if that sounds bad but at least I will get some sort of answers you know? I have no family history, I was adopted at birth so I am going to request the BRAC assessment. I do have a daughter that is 21 so I feel that it is important for her to have that info as well. I am not familiar with ADH so I am going to go read up on it ( i dont know all these abbreviations yet). keep me posted ! best of luck
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You'll be in our thoughts tomorrow! Let us hear how it goes.
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Hi - I hope your appointment gets you some answers!!! Let us know how it turns out.
My Jul 27th follow up to my Jul 1st 6 month check up appt is approaching. Although I am excited to get a whole new set of diagnostics from this great breast clinic, I am starting to get scared about what they may find. I know that sounds crazy, but my films from last Dec were from a less than spectacular clinic and read by a radioligist who was too busy to spend any time with me. I pointed out calcs to her and she told me there was one area of concern - when I read the report, it was actually 2 and I was BIRADs 3, which is not what she told me.
So....finally getting the expert attention now but feeling uncomfortable. Sigh. Well, on vacation until the 22nd, so trying to relax a but but wanted to check in with my sisters. hubby doesn't want to talk about this at all, sigh. Hugs to all.
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had my appt today, the plan is a lumpectomy. she does not feel that it is anything bad but because it is painful and has gotten bigger that if I want it out out it will come. i loved her, i was very comfortable with her. i also mentioned how stressful the 6 month watch and wait was to me and she said provided that everything comes back ok i will be able to go back to yearlys after this. so all in all a good visit. we are going to Portugal in a month so we decided it was best to wait until we got back.
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Glad to hear your appointment went so well! Now focus on making that a trip of a lifetime!
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So glad to have found this thread! Having read through it has helped tremendously. I have been in the the 6 month club since 2008. I am 37 and have had 2 biopsies, both of which were benign. My last round mammo and ultrasound were last week and I am now going back to my BS. I have had consistently BI-RAD scores of 3 or 4 since I was 34. It is incredibly stressful but I know that I need to be proactive about my health. How reassuring to know that I am not alone. Good luck to all of you and continued success in your journeys!
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You're right Iznc, you are not alone! Sorry you need to join us, but the women (and men) on these boards are amazingly supportive--we welcome you! I noticed that you posted another thread but deleted the message--did you get the information you needed the other day? This site is so filled with information--you can also type key words into the search engine (button at the top right of this screen) and other posts with related information will pop up. Let us hear how your meeting with the BS goes.
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Need some advice. Even though I just got checked out about a month ago, I am having a problem right now. It is in my left breast, the one I have never had any problems in. I am getting this pain, that is so severe it woke me up many times in the night. It is when my left breast gets compressed or the outside of the breast gets pushed on. The pain is like a burning searing pain that almost takes my breath away and last for 5-10 seconds each time. Then it feels achy after it happens for about an hour or so. Has anyone had anything like this? Should I try to get into my BS or just wait it out and see if it continues.
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mvs - you need to go in. I've seen so many posts out here about problems popping up right after the exam, so who knows - there is no rhyhm or reason to this stuff!! Maybe it is something simple like a pulled muscle, but you won't know til you get it checked out!!
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mvs, on one of my first visits to my BS I was feeling insecure and feeling like I must be overreacting to what was going on--he looked me straight in the eyes and said, "I am your doctor now. Any breast issues that pop up in between exams and appointments, you call me first, and we'll figure it out." My advice is to call the BS, explain the situation, and go from there. BTW, the secretary for my BS always tries to discourage me from coming in, and I use to apologize for taking up his time whenever I'd see him--he would always shake his head and assure me that he wants to know when there are changes--after all he is there to watch for changes...
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Thanks for the responses. I just wish I had some idea what could be causing this. It is not getting any better though. I realized this morning that I have my GYN appt. this Thursday so I guess I will have her check it out and see what she thinks and if I don't get any answers I will try to get into my BS. Just so frustrating when I thought I was in the clear for the next 11 months.
Melissa
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Well, here we go again, ladies. I had my 6 month check up in June, now headed back for follow up diagnostics tomorrow. This will be my first set of films from the best breast clinic in the area, so I am happy about getting a good look from the pros (instead of the too-busy-to-care amateurs I was dealing with last year). The good news is my doc said to block off some time. If the diagnostic mammo shows anything, they will send me straight to ultrasound, I like that one stop shopping idea, used to having to schedule, reschedule, et al. He is retiring next month, so this is my last time with him, he and the radiologist have been together for over 20 years, such great experience between them. I am nervous, have been blocking it out and enjoyed the summer so far, didn't let it consume me. Feeling lots of pulling, "twitches" and burning sensations, so we'll see what's happening. Could be the thickening areas getting thicker, not sure. I am anxious to see what is happening with my increasing calcs, so far they are scattered. Also they will mammo my good side, which is always great for comparison since I have asymmetry. The right side is crystal clear, or I hope it still is! I'll let you know tomorrow eve how it all turned out. Hugs to all of you and thanks for listening and being here!
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I will be thinking about you, good luck tomorrow. I like one stop shopping unfortunately it doesn't happen to often when it comes to this.
Janet
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Hi all...haven't been posting lately, but have been reading/lurking. I had my six month followup diagnostic mammo last week--I got the all clear. Why am I not elated about that? I seem to have this fear they are missing something, or that it's just a matter of time before it starts up again. Anybody else feel this way? Is this normal? Oh, I'm on tamoxifen as a preventative and I hate it...
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I'm a little surprised about the comments from doctors regarding MRIs. Even if your MRI "lights up like a Christmas tree", it might be worthwhile to start having them (say, annually). First, subsequent MRIs will have a baseline MRI so that any changes can be flagged as suspicious. The idea would be for everyone to more or less to agree not to over-react to the first MRI, but to pay a lot of attention to changes that show up in subsequent ones. Second, studies that have specifically addressed this question have found that MRIs find more breast cancer in high risk women than mammograms and that it is found at earlier, more treatable stages. For example, a study entitled "Prospective Study of Breast Cancer Incidence in Women With a BRCA1 or BRCA2 Mutation Under Surveillance With and Without Magnetic Resonance Imaging," published this year, concluded that annual surveillance with MRI is associated with a significant reduction in the incidence of advanced-stage breast cancer in BRCA1 and BRCA2 carriers. While you may not have a BRCA mutation, you are in a similar high risk group. Obviously, your doctors may have other reasons for not recommending MRIs based on your individual circumstances.
Best wishes,
Sarah
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carpidiem---make sure you bring all your old films (mammos, US, and any MRI) since you are switching to a new facility. I had to do that a few years back since 2 hospitals murged and the facility I had been going to lost their MRI contract. You need to have your old films for comparison purposes. Praying you get good benign results soon.
Anne
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Linda M - I know how you feel. I was diagnoised with ALH and felt the same - thinking I was a ticking time bomb, just waiting to get cancer. After years of biopsies etc. I chose to have PBMX - not for everyone but I don't have that dreaded fear anymore!!
Hang in there - Valerie
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Good luck tomorrow Carpe. I will be thinking of you and praying for a nice boring check-up. I still have this pain going on in my left breast. Which really bums me out because the left has always been my good breast. I just jumped into the pool earlier and about screamed from the pain shooting thru it. Will talk to my GYN doctor on Thursday about it.
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Thanks, ladies, I really appreciate the support and guidance. Melissa, I am sorry about the pain. I hope your gyn can figure out what is going on, and it's your good breast, ughhh.
Off to get some rest, I hope. Trying not to let the mind wander, I know that "it is what it is", time to take some of the advice I always dish out!! Hugs to all.
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Frustration abounds. I won't go into my whole story but I am military and have moved 3 times in 5 years, during which I've had all sorts of breast issues and a ductal excision. Records have been lost in the moving by the bases, as have been lab results from my biopsy which are no longer in the computer system or my medical records. In Feb, I was referred from Base X that I lost faith in to a large regional breast care center (military). I handcarried what little records I have left, including a full set of films from Dec on both breasts from Base X, along with a stack of things I photocopied from my records and paperwork I managed to pull together on my own from the bases. They made me a file at the new place and put it all inside, I watched them do it! My new doc reviewed everything, put it in order and made notes.
So I showed up today for my diagnostic mammos on my bad side and guess what??? For some unknown reason, the lab tech mailed all of my stuff back to Base X. I was gracious and mannerly, I have to "represent", but my inside voice was screaming at the top of her lungs! Ugh!! Whyand why me, again??!!!
Well I did have diagnostics done today (6 compression shots on the two dense areas, ugh) and nothing unusual popped up, so that is a blessing. The bad news is that the doc had nothing to compare them to, so unable to see if the densities have grown, increasing calcs, etc. Can't give me a BIRADS, it is inconclusive. And - Base X is using digital films but mine were not in the system for some reason. So now I have to drive all the way to Base X to see if they have my stuff (fingers crossed) and then drive 35 miles through DC traffic to take it to my new primary doc and wait for her to do the comparison. I really just wanted to cry because it seems like this lost records thing is compounding my stress. Having a baseline when you have focal asymmetry is really important.
Off to sleep, I am wiped out on all levels. Thanks for listening!!
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So sorry you had to go through all that with your records. That is a lot of extra stress that is unnecessary. Sounds like your diag. today went well though, so think positive about that. Good luck with getting everything straightened out.
Melissa
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Thanks for the note. I just called Base X and my records never arrived. Just so unbelievably frustrating. :-( :-(
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Thanks for the note. I just called Base X and my records never arrived. Just so unbelievably frustrating. :-( :-(
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Can I join the club too? I'm not running around like Donkey from the Shrek movies going "Pick me, pick me!" but since I am doing the 6 month thing it's nice to have a place where I can talk to other people going through it!
I have a quick question- I've been on the mammo, ultrasound every 6 months routine for awhile. Most recently I had an MRI (which came back BIRADS 3), and now I have to go back in 6 months for another MRI. Why the MRI? Did they see something only on the MRI this time? Is it typical to have an MRI to follow up the other MRI?
Carpediem- I can't believe the bad luck you have had! How incredibly frustrating!
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Need advice from veterans of the 6 month club: my first 6 month check will be in November (ADH dx.) I just made hotel reservations for my son's college graduation and realized that this will be in May, when I will be due for the 2nd 6 month check. Although that is many months away, I immediately started to worry about it-- what if they find something before? Or should I hold off the appt. until after the graduation (but then be worried and preoccupied during what should be a joyous event)? How do those of you more experienced live your life in these 6 month increments? I am already stressed out.
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momoschki--------I know exactly how you feel. When I was first diagnosed with LCIS (almost 8 years ago), I had a really hard time making any long term plans, worrying about the "what -ifs". Over time, that has subsided. After a lot of reflection, I realized that the worry was really immobilizing me, worrying about something that may never happen was keeping me from enjoying today. I decided to try (the operative word is "try") to limit my worrying to the actual day of my appt (I do high risk surveillance of alternating mammos and MRIs every 6 months); and then if something is found, deal with it then. Taking preventaive meds (tamox for 5 years, now evista) helps give me peace of mind because I know that it is helping decrease my risk significantly.
Make your plans for the graduation--put your appt out of your mind; worry will not change anything-----go and have a wonderful time celebrating your son's accomplishments---and then come back ready to focus on your appt.
Anne
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Anne,
Here is the dilemma: schedule the appt. before the graduation and worry (i know I will), or take my chances and schedule before the graduation, taking the chance that everything will be fine and then I can go see my son graduate without feeling crazed? Even before the big Dx, I have always been that unfortunate type of person who is always thinking, "what if?"
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do whatever you think will cause you less stress. No one can tell you not to worry----it's human nature. Just don't let yourself be consumed by it; you'll miss out on too much if you do. Worrying about it won't change anything, it is what it is, so go and enjoy the graduation!
Anne
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