Member of the "6 Month Watchful Waiting Club", Unite!
Comments
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Thermograms are ineffective.
In the future elastograms may be of some benefit but still require correlation to mammogram.
Considering LCIS and ILC don't show up well or at all on mammo I feel grateful that I will be receiving MRIs. My risk is very high & I have already had ovarian cancer.
None of this is perfect but I am glad I will be followed closely.0 -
Emmalee, what is your diagnosis? You have never shared one that I find, but are posting on multiple threads, including on the Stage Four Only board, and all you ever do is attempt to dissuade women from their conventional medical tratment in favor of, quite frankly, quackery.
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thanks for the well wishes! I am wondering, do you think that my chances of LCIS is increased because of ALH in both breasts? I am starting to think that just the odds alone I will be very lucky to leave my lumpectomies on Wednesday with nothing more than ALH in both breasts.
Also, what do you think the recovery time will be for two lumpectomies, one on each breast? My BS said a week? Do you really think I will be down that long?
When I had my biopsies (a sterotactic and 3 core at the same time) I was sore for a few days and very very bruised but otherwise ok.
Starting to get nervous
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cinvee----you have about a 15-30% chance of being upgraded to something more serious (LCIS, DCIS or invasive bc), regardless of it being in 1 breast or both breasts. but that means a 70-85% chance that nothing new will be found!
I was up and about the next day after my lumpectomy, just took it easy for a few days; I'm sure you'll be fine in less than a week. Praying you get good results soon.
anne
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Thanks Anne. I am getting nervous.
It's funny, one of the things that I am most concerned about is not being able to eat! I am a "grazer" and eat small meals all day. My wire localizations are at 11:30 with the lumpectomies scheduled for 2:00. I figure the best case scenario I will get my cookie and juice around 4 or 5pm. I never go that long without eating. I am very healthy otherwise, but not eating for that amount of time is driving me crazy
I wish the lumpectomies were the end of this stressful journey, but I know they are not. Being in the 6 month club sucks. My mam that started this aweful journey was on Oct 17th. I can't imagine doing this twice a year. At all.
If this is anything more than ALH, I am seriously considering a PBMX. I can't do this over and over.
Cin
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I had to be at the hospital at 7:30 am and my surgery didn't take place until after 1PM. The last thing on my mind was eating, although I had a really dry mouth and was really thirsty. Wishing you the best.
My next trip to the operating room, whenever that may, will be for a PBM, and hopefully there will be no cancer hiding.
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RosyFL,
You were right. I was so nervouse I counldn't have eaten if I wanted to. All went well and they were able to get clear margins on both breasts. I am hoping for pathology to be back on the 26th.
Thanks for your response.
cin
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cinvee,
Hope you are feeling better. Thinking of you.
Rosy
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Thanks Rosy. Because of the holidays it may be Friday before I hear anything. I have been a wreck over the holidays. Not feeling very festive at all this year.
Cinvee
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I just had to have an emergency appendectomy,
on of all days, Christmas Day. My 6 month mammo/sono and check up, which was scheduled for Dec. 28th and Jan. 7th, had to be cancelled until I recover from the surgery. I called the oncologist office and asked them to send me a new prescription for the tests, since mine was over 5 months old. They reminded me how important the follow up is, which I know, but I really wasn't planning on the Christmas surprise I got. I'm 63, so it was a little shocking to hear, it's your appendix. I just can't imagine a mammo with all the pulling and stretching they have to do and with my left breast, still sore from my lumpectomy 7 months ago and now the sore belly.
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rosy---sorry to hear about your suprise surgery (was it laproscopic, I hope?). don't worry about keeping exactly on your follow-up schedule; your job right now is just to heal up and recover! The mammo can wait. I had to have a TAH/BSO due to large reuptured ovarian cysts and it threw all my tests off schedule. (but with LCIS, nothing is going to change quickly, so there is so comfort in that)
Feel better
Anne
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Thanks Anne.
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Hope you are feeling better Rosy.
My surgeons office called today. She wasnt available, and I meet with her on the 7th, but the path from my lumpectomies came back as no malignancies
However, they did find ADH in both breasts along with the ALH. So, it's a bit of great news, bad news. I will dicsuss next steps with the surgeon on the 7th. The gal did say today that I am for sure on the 6 month list. I am a little more worried about the ADH than I was about the ALH though. Trying to stay positive and remember that no cancer was found. MRI in January and my 6 month adventure begins. Not looking forward to it. Oh, and Tamoxifen to start in January.
Cin
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Oh rosy, I am so sorry, ughhh!! Hope you are recovering quickly!
Cin, good news/bad news, for sure. Please let me know how the tamoxifen goes for you, I am thinking about it, still...
I went on a family reunion cruise which was fabulous. Unfortunately, I am having the same problem now with m right breast as I had with left before ductal excision - woke up one morning and the sheets were stained. Ugh. I really hate that. Guess I have papillomas on the right side now. Same color fluid as I had on the left 5 years ago. Hubby was upset.
More soon, Happy New Year to all of you wonderful ladies, and here's to a healthy 2013 for all of us!!!
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Hoping 2013 will be better for all of us. I'm venturing out today one week post appendectomy. I'm losing my mind in the house, and I need a hair cut! Can't drive yet, so hubby is driving me today.
Cinvee and all those who are taking tamoxifen, you are so brave. I won't take it, and onc said no because of COPD. Too risky for me with bad lungs. I'm OK with that.
Anne, what is a TAH/BSO?
Rosy
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Total abdominal hysterectomy & bilateral salpingo oophorectomy is what it stands for. Uterus, tubes & ovaries removed.
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Hi all,
Hope you all enjoyed your holidays! I have a really stupid question to ask for those of you who don't have ADH or any other atypical findings yet (or maybe if you know someone or does/did). I'm currently doing 6 month follow ups for 2 years for a BIRADS 3 mass, only finding so far is PASH and because of my high risk % my BS wants to start including MRI screenings as part of my follow ups. Well I recently had an appt with my obgyn to adjust my bc and she was very surprised/concerned that I still have this inside my breast. Since she receives all of my follow up reports she is wondering how big are they going to let this mass get before they want it removed anyway...at which point it will just be even more tissue that needs to be removed?
Does anyone have any experience with this? Are there any guidelines where it is recommended to take it out just because it will cause problems due to size/age/etc? The mass is 4.6 cm x 4.7 cm and I am 37. I'm sorry since this is non-critical in comparison to what so many other people on here are going through, but I'm not sure who else to ask? You all are always in my thoughts. Take care.
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Maiyen, what reason did your breast surgeon give for not excising it? Also, did he discuss birth control with you? It appears a certain number of cases responded to Tamoxifen, so do they want to give you estrogen based birth control? From what I can gather reading online they are generally excised because they can grow so big.
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Rosy----uterus, tubes, ovaries, and cervix (they took it all!) Hope your recovery is going well.
Cinvee----sorry to hear they found ADH as well as the ALH; but the excellent news is that no DCIS, LCIS, or invasive bc ! So just keep vigilant with your screenings and take the tamox preventatively. I've been doing that for over 9 years and I can say it definitely gets much easier with time. It is a good idea to take a baby aspirin (81 mg) daily if OK with your physician to reduce the risk of blood clots.
anne
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Cinvee my situation is very similar to yours. I had my follow up appointment with my surgeon today for my lumpectomy. She said pathology report showed no residual ADH or cancer! My needle biopsy found ADH & borderline DCIS. So I guess they got everything out during first biopsy. Might get 2nd opinion on first biopsy to make sure not all DCIS. I'm grateful they didn't find more cancer but I still don't feel very relieved. I know it could be much worse but I'm still very high risk. Like you, I have ADH in both breasts. I'm still waiting for results from brac test. But by surgeon said if my lifetime risk is above 40% I should consider getting bilateral MX! Well I was at 43% risk after first boob & family history etc. so now it's probably higher! My surgeon agreed my risk would increase with ADH in both breasts. So now I'm trying to wrap my head around probability of dbl mastectomy! Not sure if I'm ready to choose this! Almost wish I didn't have to choose! & dr would tell me what to do. While I got mostly good news today, my journey is far from over! My husband doesn't get why I'm still freaked out! He's ready to celebrate!
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MelissaDallas, the surgeon that performed my original biopsy said that she wanted it removed no matter what the path report said due to its size. However there was a complete lack of communication following the biopsy and I ended up going elsewhere because of that. I've since had two follow ups at MD Anderson and my BS said that they would not remove the mass because the surgeons there are very conservative so right now, my only choice there is to do the 2 year program. I've been taking birth control for about 5 years now and it is a combination pill.
Thank you for responding.
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Let, our stories are very much alike. I meet with my BS on Monday to go over the path from the lumpectomies. She didn't seem like pbmx was at all an option when it was just ALH. I am wondering if she will change her mind now with ADH as well in both. I just want it to be an option. In 2 months I have had 5 biopsies and 2 lumpectomies, countless appointments and endless worrying. I just cant imagine at all facing this every year. With extremely dense breast I will always worry that they are missing something. I have an MRI this month which my BS already warned me will look like I have nothing but problems and will most likely show false positives. Great.
Thank you to each and every one of you for your answers, sharing and support. I can't imagine going thru this without the knowledge and support of this board!
Cin
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Hi all!
I may be your newest member yet . . . Then again, I may become a member to a different club. I suposse I will know in the next few weeks or so.
I had my annual mamo on Christmas Eve day and got a call back the day after Christmas due to a "possible abnormality" which later I found out meant a very dense area of my left breast. I'm pretty dense already, so they tell me (just recently). Went for diag mamo and nothing of concern showed. Had an US which revealed two (what she is "almost positive" are) fibroadenoma; 5 and 10mm. I was told these are not what the first mamo showed, but are in the same general area. I was told to join your club and see what happens. I instead told them I want a biopsy. I go in for my bio on the 17th.
This is what concerns me the most . . . My sister was dx with Invasive Lobular Carcinoma. This cancer does not show on mamos or US most often because it does not always grow as a lump. This cancer usually grows like a spider web and is often confused with dense breast tissue on the scans. Is this what my first mamo showed? If so, and the other two growths are fibros, the bio is going to come back neg anyway.
This breast center uses some sort of "formula" to determin whether or not a woman is high-risk. I was told that I'm not in the high risk catagory. My paternal grandmother and my materal aunt also had breast cancer. My sister was dx at age 41. I'm 43. I have a sinking feeling that this dense area is the same cancer she had. So, I called today to voice this concern. I spoke with one of the nurse specialists and she agrees that I should be a high risk case. She is going to see if she can get an MRI approved for me even if my bio comes back neg. I really really hope she's able to persuade the doctor to agree.
So, after my bio and (hopefully) my MRI, I may just be your newest member. If not, I'll be rapping the secret knock on the door of that other club.
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I have been in this club since Aug 2012. My breast US showed 2 lumps- Birards 3: Fibroadenomas. However one grew bigger and was painful. Got it removed in Sep 12 and biopsied. Pathology report said it was fibroadenoma.The Doc said the other lump is negligible in size com back "in 6 months"
Fast Forward Nov 12. The second lump which couldnt be felt on physical examination has grown and I can feel it. But since its movable i feel it is another Fibroadenoma.
From December I have been experiencing severe pain and burning in my left breast. The burning is so severe I have to stop whatever Iam doing and once was awakened from my sleep. I am not sure why this pain and burning, may be side effect of surgery I had??
I not sure whether to see a doc now or "wait"??
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First of all to Bean, I think you are high risk, what are they talking about, I wonder?? Between your grandmother, sister and density? Here is a calculator to use as a guide, althoug not perfect, it's all we have - go down in the middle and select "Gail" model:
http://www.halls.md/breast/risk.htm
My doctor said if you are over 30% on Gail then you are high risk, in her eyes. She also "counts" grandmothers, maternal and paternal. Which is good in my case since I have no sisters, and my mom has had many biopsies and problems, thankfully benign.
As for dense areas - I have two. I worry that there is something cooking in there, and they are increasing in density each year. An MRI is the best way for them to peek inside, I hope you get it. I've begged for one but they are stingy, they think that as long as everything "flattens out" on diagnostic mammo all is well. Who knows?! I am having a "3D" mammo done at one of those traveling units sponsored and read by someone different at the end of this month, in lieu of my regular doctor appt, the insurance will pay for one or the other, but not both. I look forward to having a separate set of eyes on my breast issues. I feel like it is too easy for them to say BIRADS 3, probably benign, and send us away. It's like the are covering their a$$!
Keep us posted on your biopsy! I am glad you're moving forward with it for your peace of mind.
To DAFSQ, go to the doc. The burning could be related to the surgery (I had a "white hot" or icy burning sensation after my ductal excision, maybe due to nerve damage or something) or it could be that you have a duct that is blocked with a fibroid (also known as papilloma if they are small). I was always told - see you at the next appointment, unless something changes. This sounds like a change so I would go in to be sure!!
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Hello there Group no one wants to join! Happy New Year! Well, I am coming up for my 6 month checkup in 3-D this time they tell me. On January 11th, they will once again put me in a silly gown and poke and prod me and squish my boobs until there is nothing left to squish and HOPEFULLY, they will tell me to come back in 6 MORE months instead of sitting me down to tell me bad news. I had a Birads 3 last time and since it was clustered microcalcs and no lump, nothing to biopsy (at least not then) and now I get to worry for a few days until I get those results on Friday. There was some "thickening" in the "area of concern" the last time that they want to watch and I am still having some pain in that area.
And, I am having soaking night sweats! I have been having those again for about a year now after NONE for several years after going through menopause and the ones I had then were NO where near as bad as these. I read somewhere on here that this was prevalant in some people prior to diagnosis...sigh.
Not going to buy trouble where there is none YET. Just wanted to check in and wish everyone a Happy and most of all HEALTHY New Year in the 6 month club.Will check back when I know what I am up against this time. Be well ladies.
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Hi April! I am having the 3D boob smashing event later this month, let me know how it goes!
Something of interest - I also had the "night sweats" - do you have any nipple discharge? The reason I ask - I had a total ductal excision on the left side a few years back because of papillomas - I would have one of those night sweats and wake up to stained sheets, every time! Well a few weeks ago, I was on vacation, on a fabulous cruise...at night, I woke up with one of those night sweat events. Thought nothing of it until I got out of bed in the morning and there it was, a stain from the right breast. UGH. I guess I am having the same issue. I never heard anyone else have this night sweat thing with their discharge, but thought I would mention it. I wonder if it is estrogen or something. Maybe wear a white tee shirt and see if this is happening to you.
Anyhow, we're here for you! I hope your 3D imaging goes well. For me, I look forward to seeing what a new doc will say when looking at new, better pics. Hmm.
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Thanks carpediem. According to the link you gave, right now, I'm at 33%. After my bio (assuming it's benign) I'll be at 41%. So, ya, I'm surely high-risk.
I'll keep you posted on my bio and whether or not I get the MRI.
Good luck with your 3D mamo. If there's something there, I hope they find it. But my wishes are that they can tell you, instead that they know that everything's clear.
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Hi Carpediem and all of the "club"
I had to postpone my appointment to the 16th because the surgeon has the flu! She likes to meet with me to go over results and to do a thorough breast exam. I guess that is the difference between going to a major cancer center and my old screening place. But, of course now I have to sweat it for a few more days...sigh.
Also, as to the question about the "discharge" I don't have any at all. So, the night sweats are just happening out of the blue. Truly annoying and since I read that a few of the people had this before diagnosis, it kind of made me nervous. My doctor does not think it is anything to worry about, but you know how that goes. Still seems odd to me that they would start again after so many years of not having them. Oh well, will check in next week after I know. For those of you who had something this week, you are in my prayers for a good outcome.
Take care!
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Well, I am bloody well back here again...
Hi Carpe and ladies.
Damn tits are not all they're cracked up to be, are they? I have had six months of bliss and back for another ultra sound on reactive nodes and another cluster of lumps.
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