Member of the "6 Month Watchful Waiting Club", Unite!
Comments
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Thanks for the reply Carpe. I don't feel a cyst or anything other than sore to the touch. And you are right , my Dr says the same thing so I will call in the morning. Back on that roller coaster early....
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I completely agree. 6 months? Ouch, that's a long, long time. And I thought my 2 + months was long! But seriously, I had the mammogram in September, a few days later they called me back in for a diagnostic mammogram and ultrasound, about a week after that, 2 stereotactic biopsies (one on each side), had to wait about a week for those results, then they decided to do one more stereotactic, so I had to wait on that appointment and wait for those results, then finally had the excisional biopsy and waited for THOSE results -- LCIS, ADH and ALH plus a cyst that needs to be watched 'cause it has some "material" in it. They sent me to an onc to discuss tamoxifen but she used an indicator survey on line that you're not supposed to use if you have LCIS. I was a basket case by the time I met with the onc and I'll never get those 9 weeks of my life back...I feel like I was"barely there" at work during that time, not only did I have to take tons of time off, but I couldn't concentrate when I was there. And my job is one that requires full concentration.
So, I haven't really decided on the tamox. I've been told I only have to go back at the six-month mark (March) for an ultrasound on the cyst, and I just need to have a yearly mammogram and breast exam. I would think with all these indicators, I would at least be on the 6-month watching and waiting. I am going to get a second opinion in Boston, see what they say, see what turns up on the March ultrasound and go from there. If anything else suspicious comes up, though, I'm strongly leaning toward a masectomy and getting rid of these two time bombs in the middle of my chest. As others have said, my bikini and baby-nursing days are over, and I never want to go through another 9 weeks like the ones I went through this fall! Plus, I am scared to death that next time it will be DCIS or IDC, and I DO NOT want to do chemo or radiation if I can avoid it.
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Mary, they want you to wait an entire YEAR between screenings, even with LCIS, ADH and ALH, all strong risk factors for invasive cancer down the line???? Are you f'ing kidding me? I am glad you are going to Boston for a second opinion on this.
I am at a BC center (Yale) because I went to a small radiology center when I got my mammo in July and they just wanted to wait and see. I did not feel comfortable with that and made an appt with a BS at Yale and saw her in October as I have plenty of risk factors and was scared they might have missed something.
She agreed with my 6 month follow up frome the other radiologists but wanted me to come to Yale for the next diagnostic mammo as they have 3-D mammography and plus that is all they do there since it is a BC center. So, that is where I will go from now on!
My microcalcs tripled since July from 4 that they could see in a cluster to 13! That is what prompted the biopsy and the Birads-4 score from a Birads-3 in July. So, I had the stereotactic core needle biopsy on Friday and now I wait. The radiologist did say that to her, all looked benign, but she said there is NO way to tell from a film or even a biopsied piece of tissue without pathology so I should know something soon (hoping Tues which is the earliest she said I might hear and the latest would be Thurs) cause this waiting shit is for the birds. I feel like I have been "waiting" ever since July when they found the "area of concern" (don't you just love the euphemisms for possible cancer?) and I just need to KNOW already!
Hoping that you find whatever you need to know in Boston.
Carpe, I saw Lincoln already! It was marvelous and worth the length. I could always find something to clean here in this house, but DH has been so worried about me, he has been a cleaning machine and did it all! (I know, I am blessed beyond measure) so hard to find something. I think I will watch some mindless television. I love HGTV.
Sndlu, hoping all goes well with you!
Enjoy the rest of your day ladies!
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I don't think there is woman on this site that has not had the same thoughts at one time or another. Don't be too hard on your self april.
Breath...0 -
April, when do you get your results? I am thinking of you and praying for good news!
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Hi ladies I wish I had found this group six years ago! I had been going through multiple tests every six months. Of the worst I would say was the needle guided mammogram biopsy. Every six months however I would go in for a mammogram leading to either an ultrasound or an MRI with contrast or sometimes both. Every single time without fail I would get a call back to come in for a biopsy. There were new findings all the time. I had two lumpectomies both in my right breast and about 3 years ago my left breast started acting up as well.
Each time we would wait for results I felt like I was just waiting for the other shoe to fall so to speak. I kept getting lucky so i felt like the inevitable was due.
The last scare was the last scare when I made my appointment to have the MRI biopsy I made an appointment same day to visit my breast surgeon and discuss having my "girls" removed and upgraded for less problematic ones
I have wonderful doctors in Boston and am currently scheduled for a double mastectomy with immediate recon. It was the right choice for me after contemplating for many years. Whatever you ladies choose to do I wish you all peace in the world of waiting and wondering . Mastectomy is a big commitment and can feel a little scary waiting It's definitely not for everyone I've almost backed out a few times myself but this site is a huge support system no matter which way you go.
Good luck all!0 -
Hey all,
Guess I'm officially here...I just had a lumpectomy/excisional biopsy on Friday...waiting (impatiently) on pathology.
I have had two lumpectomies now. Both on my poor shrinking left breast...I should probably go ahead and name it Scar. Prior to this last surgery I was told I have "dense heterogenous breast tissue* per my MRI which will require follow up MRIs every 6 months. Never had a mammogram, only MRI and Ultrasound (I'm 26). MRI take so much dang time...not to mention the amount of crud from the test itself...kinda wishing I could just go mammogram every 6 months. I was hoping after this lumpectomy I could avoid the repeat MRIs but I don't know if that's advisable.
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Hey BrandieMcAdams I can sympathize with you I was about 26 years old roughly when everything started for me as well. Although everyone has a different situation gaining knowledge is power and Im glad you found this resource so early! I required MRI's every six months for the same reason as you after a while i became quite friendly with staff
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Still no results although it is still early in the week. Waiting is for the birds! I am about ready to jump out of my skin and making mistakes at work (supervisor is being cool about it but I pride myself on my accuracy (and my work is detailed as hell!) One of my clients almost couldn't start a training program due to an error I made!
I just figured a BC center as big as Yale would have a fast turnaround time. I know I only had my biopsy on Friday and I am being unrealistic, but sheesh, I just need some answers before I lose my freaking mind!
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Maryc2130, run, do not walk for a second opinion. You absolutely must be monitored every 6 months. With all those markers there is no question that more frequent monitoring is necessary! My 6 months was alternating MRI's and mammo's. Clinical breast exam every 6 months. Please do not stop until you find someone that will agree to high risk surveillance for you. Best of luck!
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Hi April!! When I'm impatiently waiting I just think how important it is for them to be thorough...wouldn't want someone to cut a corner and give me incorrect info either direction! Let the universe unfold as it will...
Friday will be here soon :-) :-)0 -
True Carpe...just so hard to wait to hear! But, I have no choice I guess. If I don't hear by the end of today, will call the radiologist just to see if she has heard anything. Thanks for your support. Just need to know already!!!!!!!!!!
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I know how the waiting feels, it stinks!! I was overseas once and my pathology tests had to be done in the States...talk about waiting!! I was already healed from the ductal excision/lumpectomy surgery when the news came back (clear, thank God!) Hope your day goes by quickly!
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DCIS - Grade 2. That is all I have right now. I knew it would be this. Just hoping that the complete path report comes soon and gives me more info to go on. Guess I threw the dice and it came up craps! sigh...
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April - I'm sorry you didn't get the results you were hoping for. At least it's the best of the worst - early stage and very treatable. I know that's probably not much of a consolation, though. {{{HUGS}}}
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Oh no.. I am sorry, sweetie!! Hugs to you!! Wish we could have a glass of wine and hang out this eve. Well I am here for you!!
Let me know what the whole path says and your options for the way ahead, guessing there might be a few?
{{{{April}}}}0 -
So sorry to hear your news april. From reading some of your posts on various threads, I do believe you have some fighting spirit though! Hoping you get a good plan of attack and wish you much luck.
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Hi, all can I join you in the 6 month watchful waiting club? I haven't been on BCO for a few months, as I have put this lump out of my mind completely. Now it is time to get tested again, so all my emotions and fears are flooding back.
A quick recap about my situation: I found a lump about a year ago, had an ultrasound and mammogram and nothing was seen in either. Saw a breast surgeon who said that if the lump remained the same or got larger he would do an excisional biopsy at the next appointment. The next appointment came, the lump was still the same and he refused to do a biopsy. In October I was finally able to get a second opinion at a large hospital with a great doctor in Toronto. He did an FNA, which came back negative, but he said they can't put much stock into FNA's as they aren't as accurate as an ultrasound guided ultrasound, which they can't do because my lump can't be seen lol. So he has me going for ultrasounds every 6 months, which I don't really understand since it can't be seen, but maybe this time I will get lucky? Who knows....Oh yes, and since last year the lump has grown, it feels like it is over 3 cm and doubled in width, and it feels like somebody is pricking the inside of my nipple with a needle. Sorry that wasn't as quick of a recap as I had hoped.
Anyways I am having my next ultrasound on Wednesday of this week. Hopefully they will see something this time and it will be nothing at all. I do have one question though. The receptionist said that it will be a targeted ultrasound, does this just mean that it is an ultrasound specific to that spot or is it a different type of ultrasound altogether?
Thanks ladies.
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Welcome, Organa! I am headed to bed but will be back tomorrow to post more. Is there an option to have it taken out? My doc did a lumpectomy for me because it was wreaking havoc on my psyche and interfering with my quality of life (wearing a sports bra hurt, pain, etc) Felt good having everything pulled out.
Anyhow, understanding hugs to you, I'll be back tomorrow to check in!!0 -
The original breast surgeon said that he was going to remove it, if the lump was still there but then chose not to. He said I would have a scar, but he also said I have lumpy breasts and if he removed one lump he would have to remove them all. I do have some lumpiness, but who doesn't. This one particular lump is very different to any of the natural lumpiness in my breasts if that makes any sense. The second breast surgeon, while I think he is a great doctor, seemed to be very busy, so I didn't really have a chance to talk to him about removing the lump. If he feels comfortable with the every 6 month ultrasound thing, I guess I should too, after all he is the expert. I really wish I could get an MRI on it since mammogram and ultrasound seem to be useless to me right now, but they don't do them as frequently up here in Canada as far as I can tell. Anyways it is almost 5 am. My runny nose has kept me up for half the night (I better better go catch it hahaha). Take care!
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Ugh. I think the key is to be comfortable with your care team, then you won't second guess their assessment and can have peace of mind during the time between visits. I've "fired" a team in the past because I felt like they were blowing me off, and I had to point out calcifications on my films that the radiologist failed to note in my records. I move around a lot so it's important to have complete records so we can look for trends, etc. The docs are the experts, but they are also human, ya know?! Despite having one really dense breast (my "worse" one) I've asked for and never received an MRI, my docs are stingy as well. Do you have copies of the radiology reports?
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I don't have any copies of the reports, but I have copies of the actual mammogram and ultrasounds on dvds. I am only 32, so I think that is why I'm not taken seriously. My auntie died in her 30s from breast cancer though. But it was at least 20 years ago, and she lived in a small village in Europe, so I don't know what kind of care she would have received. I know she had a mastectomy. I understand why the doctor does not want to remove this lump because scar tissue will make it harder to read a mammogram in the future, but at the same time I hate hate hate this uncertainty. Oh well it is just a few more days until I have my ultrasound.
This whole ordeal with the lump has been a disaster right from the start in regards to trying to get appointments and what not. When they were trying to book me for my appointment at the hospital the hospital was saying no they wouldn't take me because I didn't follow up with the original surgeon who works at that hospital. lol. That surgeon told me himself if I am not satisfied with what he has to say then I should get a second opinion. So I did get a second opinion, and now it is like the hospital is trying to blackball me. The receptionist at my family doctor had to fill out paperwork for a new patient and then they took me in. Sorry for ranting, nobody in my life seems to understand how frustrating this all is.
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Welcome, Organa! This stuff is just so difficult. It seems like so many answers are wishy-washy at best. I know I kept waiting for the results from biopsies "so at least I'd know", but still don't have a definitive answer. It's so hard to know when to push for more and when to let it lie. I hope things go well for you on Wednesday, and you get some answers that set your mind at ease. I'll be thinking of you. {{{HUGS}}}
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Thanks for your kind words Mary. I read your previous post about how they wanted you to wait a year even though you are in a high risk category. That is nuts. And I agree about not knowing when to push more. One side of me always says well chances are it is nothing, but then the other side says if it happens to be cancer I am just letting it grow. So your appointment in Boston will be after your next ultrasound? I hope it will come soon just so you have some options made available to you. Take care and thanks again (((hugs))).
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Tomorrow is my appt with BS about spontaneous discharge from formerly "good" breast, we'll see what happens. Had this in my left, fluid tested and had a ductal excision a few weeks later with tro pesky papillomas and a deteriorating duct with atypical cells. Can't believe I now have this issue on the right?! Ugh. It is also time for my 6 month diagnostics but have to get through this appt first. Sigh. Last time I had the night fluid leak I took a picture of the stain onthee sheet to show the doc, lesson learned from last time - how big, what color, etc.
I'll let you know how it goes! Tried talking to hubby but his eyes literally glazed over, floating on "da-nial" as usual!!!0 -
Ugh is right...as if the "normal" stuff isn't enough of a PITA...
I'll be thinking of you tomorrow.0 -
Carpe,
Good luck with your appointment with the BS tomorrow. I too will be thinking of you. Gotta remember that floating on da-nial thing.0 -
Thanks Melissa and Peanuts! Time to start the day and see how it unfolds....
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Will be thinking of you today Carpe!
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Thanks, April! Just pulled into the parking lot, deep breaths...
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